More About Pain with Arousal

So, why does this happen?

You know that all I have are theories.  That’s all we have for most of pelvic pain anyways.  It’s all theory until proven.  And what makes something proven?  Research.

Here are my theories:

Theory A:

Tightening Pelvic Floor Muscles

Ever notice how a man’s scrotum rises and gets tighter with erections?  Arousal is the slow movement towards orgasm.  Orgasm is a spasmodic tensioning of the pelvic floor muscles – among other physiological processes.  I wonder if this tightening creates discomfort of muscles or of the nerves running in and around them.  This could be the pudendal nerve, or it could be the more superficial nerve that is the posterior femoral cutaneous nerve…or other nerves that turn on sensation in different parts of the genitals.

What’s weird to me about this theory is that women’s pelvic floor muscles relax with arousal, so this theory about muscle tension – maybe it’s only applicable at a certain point deeper into the period of arousal?  I don’t know.  Do you?

Theory B:

Irritated little nerves

With arousal, there is more blood flow.  Maybe the pelvic floor muscles on some individuals tighten around pelvic nerves.  But, what I feel more comfortable saying is that increased blood flow definitely increases pressure on the genitals.  This increased volume of blood at that time can certainly press on pelvic nerves creating irritation and discomfort.

Theory C:

Inability to relax after tensing

Then maybe some people have pelvic pain with arousal only after they have orgasmed – that spasmodic tensioning of the pelvic floor muscles.  Maybe they cannot find a way to relax their muscles afterwards and this causes pelvic pain.  I know this is true for so many of my patients and I don’t actually put this in the category of “pain with arousal” in my head – but if you put it in this category…then know that learning to relax your pelvic floor muscles after orgasm or getting treated for this is imperative.  I consider this more post-orgasmic pain.

I think these theories, for the most part, make sense.  And, even if they didn’t make sense – who cares.  I see my patients with pain with arousal get better.  I have them map the pain.  Does it follow a nerve?  Does it follow a muscle?  Is there muscle work I need to do?  I find the source and I go after it.  Then, my patient does their homework.   Maybe it means intentional arousal for “testing” purposes.  Maybe it means doing some relaxation techniques before or after arousal.

Though there is magic in the world, there is no magic in your body.  Your body is full of things that are connected and make sense.  Your body is not made of “weird”.  Our opinions are weird.  Your body talks in different places and, I guess, in certain languages.  You just need to be working with someone that agrees to speak more than just English – and doesn’t get upset when someone else wants to speak Spanish.

This explosion of strep throat – which, by the way, always sounded so benign to me – this grenade of strep throat that wreaked havoc on my body…this shock to all my senses…it wasn’t out of the blue.  Four days prior, I was tired.  I thought “Huh.  Well, I have been sleeping with my son in bed with me.  Perhaps I didn’t sleep well.”  But, I was more than tired.  I actually had to lie down and take a morning nap.  Who takes morning naps if you don’t have a newborn??? Then, eventually I had a little soreness in my throat.  I thought it was allergies.  I always  ignore the sore feelings.  The answer is always allergies.  Then, there was that sign where I took the first fifteen minutes of a workout class and began to pass out.  Eh, probably shouldn’t have eaten a family sized bag of Doritos just before.  Excuses.  Constant excuses.  Ignoring the looming signs of one issue.  One bacterial issue.

So when my mouth and nose were bleeding, I had diarrhea that would not end, the sinus pressure took my patience away and a full-sized sedan drove right through my backyard like it was Kool-Aid Man – I didn’t get completely and entirely lost in the thought that the world was out to get me.  There were signs…signs so subtle that I kind of forgot them.  Signs written in a language that didn’t spell S-T-R-E-P.  They spelled A-M I P-R-E-G-N-A-N-T ?  and they spelled C-E-D-A-R.    I had to remind myself that my mouth and nose are connected via sinuses.  And this pressure and swelling created my ear and head pain.  And probably the excess amount of dairy I had in the form of ice cream and milk shakes solidified (like that word choice?) my changes of getting diarrhea over and over and over again.  My throat actually is connected to my gut.  The sight of EMS, cops and a fire truck is going to affect my nervous system and hours later I am going to be a completely useless, sweaty mess in my bed.  We all make sense – some right away, others later.

In the beginning, had I gone to a doctor and said “Hey, I’ve been tired”  he would have checked my thyroid.  If I said “Hey, my throat is sore” he would have given me an anti-histamine.  If I said “Hey, I passed out the other day” he would have my blood sugar checked.  (No, I don’t think my doctor would have gone to some of these extremes, but I’m illustrating a point.)  But, if I go to him with a sore throat and pus-covered tonsils, he would say “Let’s check for strep”.  And then if I followed with, you know I’ve been tired, my throat has been sore and I passed out while working out…he would have said “Yeah, of course.  You were sick.”

So when you have pain with arousal – it might actually be connected to your foot pain.  It might actually be connected to the pain with urination.  It might actually be connected to the hip pain.  It might actually be connected to the back pain.  It might actually be connected to the whole entire rest of your body.

Pain with Arousal

Sometimes everything goes wrong.

A few days ago I started having pain in my throat.  I looked at my tonsils and one of them was covered in white film.  Stupidly, I took a Q-tip and started scraping the film off.  Can you guess what happened next?  I bled.  I started bleeding from my mouth and then it started to come out of my nose.  Disgusting, right?  There is nothing grosser than the sinus cavities.  I think Ear, Nose and Throat docs are sick, twisted people.  And that’s saying a lot coming from someone that feels most comfortable talking about vaginas and anuses.  (Did you know that the plural form of anus is anuses or ani?  I just looked it up.  In doing so, I got to read the examples of anus being used in a sentence.  That must have been a difficult task for the dictionary writers.  Another eye roller for them…”Aargh, another one of these words!”)

So, I’m bleeding.  This doesn’t worry me, it just tells me that maybe I should stop scraping my tonsil.  No big deal.  I go to work the next day and I slowly start to feel worse.  I keep gauging “Hmm, should I call in for the next day?  Hard to say…” Then evening hits and I’m rapidly declining.  My tonsil is growing larger enough to make swallowing difficult.  The pus in my tonsil is spreading.  I feel hot and cold and the diarrhea begins.  (Yes, I, Sara K. Sauder, get diarrhea – but so does Oprah, Cindy Crawford, Barack Obama and Ryan Gosling!)  I call in to work sick for the next day.

The next morning I get myself out of bed and make my way to urgent care.  I take 20 minutes to fill out the paperwork only to be asked the same damn questions in person by two different providers within the hour that I’m in the appointment.  My provider face time is 10 minutes.  My non-provider, uncomfortable, impatient  patient time is 50 minutes.    I get diagnosed with strep throat.  The PA looks at my tonsils and clearly hates the oral orifice as much as I do because she makes a face and says “Have you seen this yourself?”.  She is clearly as disgusted with her job as I am.

I drive home irritated that I will be home for an hour and then have to get back in my car to drive my sick self to the pharmacy to finally pick up my prescription.  I’m thinking about how inefficient this system is.  The sick leave their bed to go to the doctor.  The sick have to wait for their prescription and only then can they go home to rest.  Three hours will have passed between leaving my house and getting my prescription medication.  I thought that was bad.

But then.

Oh, but then.

I pulled up to the front of my house.  And there is a cop.

Naturally, I assume this has nothing to do with my home.  My alarm company never called.  No one is at my house.  So, I creep forward a bit more and see the side of my house has another cop.  I still don’t think this has anything to do with anything, I’m just being nosy at this point seeing what trouble has fallen on someone else.  I creep, creep, creep, then I see it.  It’s me.  I’m the one trouble has fallen upon.  A car has driven straight into my backyard.

I get out of the car and say “What the fuck happened?!?”

The cop walks to me and says that a 16 year old without a driver’s license drove through my backyard.  I ask the cop to step back from me because I have strep and I don’t know how to conceal it.  He says that it’s ok because he is sick too.  What he fails to understand is that one sickness doesn’t cancel out another sickness – but that’s a talk I need to have with him another day.  He tells me the kid hit the gas instead of the brake while nearing an intersection.  I tell him that he is believing a child’s bold-faced lie.  There is no way that would cause a car to demolish a light post and then have enough power to run through the fence.  Another cop tells me he thinks the kid Tokyo drifted through the intersection trying to imitate The Fast and the Furious.  I like this cop better.

At this point I’m tired.  I’m tired of my face bleeding.  I’m tired of feeling hot and cold.  I’m tired of my throat hurting.  I’m tired of calling the insurance company (though I hadn’t even started).  I’m tired of feeling tired.  It feels like I’m falling apart.

But, I wasn’t falling apart.  It was just stress.  Stress on my body and in my mind.  When those hit a head, it doesn’t feel good.  But, I’m on day three of antibiotics and I’m getting my energy back.  I’m excited for the new fence and the new foliage that will come with it.  Things are starting to get rosier.

All this to start talking about pelvic pain with sexual arousal.

(How will I connect the two???  Even I don’t know yet.)

When you have pelvic pain, without an obvious trauma, it starts off small and maybe even seemingly unrelated.  Maybe it’s a little heel pain.  Maybe it’s a bit of burning with urination or hip pain.  Then it starts to spread.  I’ve talked about this spread before.  Parts of your whole body will feel affected and you will wonder if you are falling apart.  Just as I wondered why my face was bleeding.  You will not likely put the symptoms together, because, no one is asking you to.  You go to the doctor for your heel and they say it’s your foot or your calf that is the problem.  You see someone for burning with urination and they say it’s because you’ve got an infection.   You see someone for your hip and they say you have a tight IT band.  But, no one takes two literal steps back and sees that you are one person connected from head to toe.  No one thinks “Hmm, these symptoms are all coming on together.  Perhaps the spinal segment that turns on sensation to the heel which is also the same spinal area that creates sensation at the bladder and close to what activates the hip could be an issue?  They did say that they initially had back pain.”  But, alas, as I’ve also said before…no one does this.  We assume the foot is only connected to the foot.  The bladder operates completely independently – suspended by the wings of fairies and the hip’s sensation will only be changed by stretching, stretching and more stretching of tissue that truly doesn’t respond well to…stretching.

What I’m starting to pick up on more and more is that pain with arousal can become a symptom of pelvic floor issues.  For some, it’s their only symptom.  Imagine the psychological impact that can have.  (Imagine the assumptions a physicians or counselor might make about that.)

Genital pain upon the start of arousal is one thing.

Genital pain that feels like arousal is another.  That other thing is more like Persistent Genital Arousal Disorder (PGAD).

I’m arguing that “genital pain upon the start of arousal” is not PGAD, but instead, something different.  It’s not persistent.  It’s only with appropriate arousal.  Appropriate meaning that the arousal is happening because the person owning the body wanted to engage in sexual acts.  But, when the person started to think about or engage in sexual acts and blood starting to flow into the genitals, this increased the pressure on the muscles and nerves in the genitals and this pressure became unpleasant.

This engorgement of blood into the genitals from sexual arousal has caused my patients genital pain of different locations.  Penis.  Clitoris.  Labia.  Entire vulva.  Etc.

So, why does this happen?

 

The answer to that, my readers, is in the next post.  This is over 1300 words long already!  The blog rules Gods will get me!

Video on Correcting Pelvic Alignment is Now Available

That’s right.

Correcting your own alignment is huge in helping to reduce pelvic, low back or hip pain.  This video goes over pelvic alignment corrections…but none of this is medical advice. None of it. It’s just a video.

If you’d like to purchase the video, the link is here: Video About Pelvic Pain and How to Correct Pelvic Alignment (none of this is medical advice).

We are working on getting a physical DVD available, but for now, the video can be streamed through video on most devices.

Pelvic Pain and Foot Pain

Ya’ll.

All ya’ll.

I want to introduce you to my friend, Kelli Wilson PT, DPT, FAAOMPT, OCS.

We met in grad school back in 2005.  We worked three physical therapy jobs together after that. We learned to do pelvic floor physical therapy together. We started Alcove Education together.

And now…we can’t stand each other.

(Just kidding.  No I’m not.  Yes, I am.  Not.  Kidding.  But, I am kidding.)

I want to share a post from her blog.  It’s called Pain and Simple. (click on the name to read it)  I thought she did a fantastic job of explaining one reason for foot and pelvic pain.  Cuz you know, if you let pelvic pain go long enough, eventually you will have foot pain.

Enjoy!

 

This is Kelli resting on a couch.

Every body part is connected to another body part, even if they are not anatomically in proximity to each other.

If you have pain in one area of your body, it will span to another area with time.

We all know that our feet are attached to our lower legs, then our knees, then our thighs, then our hips to finally end at the pelvis.

Would you be surprised if I said that foot pain could be correlated with pelvic pain and/or incontinence?

I know this seems far reaching, so let’s step back and simplify it.  You would be surprised with how many patients question why they started having hip pain after a long spell of knee pain.  Well….it originates from the same bone, the femur, so pain can easily be interchanged between the joint above and below this bone.

Let’s span out and expand this a little more……

Pelvic pain can affect your feet and vice versa.  It has been an amazing “feat” how far we have come in medical research with pain management and all medical specialties, for real.  But as we gain more knowledge in a certain specialty, sometimes the big picture gets lost.  We stop looking at a patient holistically and focus on their specific symptoms with their particular body part.  And when that happens, we are chasing symptoms instead of finding the driver for the pain. 

Our body is made up of a complex framework of nerves.

But did you know (great Saturday night factoids to impress your friends)…..

Our body is made up of 46 miles of nerves.

Our nerves transmit signals from our brain at a pace of 170 miles per hour!

Nerves are our electric factory keeping us energized. They are always on.  They never sleep.

Nerves come out of our spinal cord and feed our muscles, joints, and even themselves.  They are oxygen eating fiends, too!  Which is why physical activity is so important in helping to reduce pain.

Nerves branch off from our spinal cord and they pass down like rivers to become tributaries then streams to end in their final placement in the muscles.

The sacrum is our upside-down triangle that is sandwiched between our lumbar spine and tailbone.  The sacrum gives off five spinal nerve segments and out of those five: S2, S3, and S4 are our generators for pelvic floor muscles.  While similarly, S2 and S3 supply the small muscles in our feet. lumbarsacrumnerves

So, if you have pelvic pain or even urinary incontinence try to spread your toes…. you might find it difficult to do because they share a similar originating home.

There has been a study published on this exact topic.  The link is here.

Many people believe that urinary incontinence is due to getting old and their bladder not working properly.  Or it is their diet.  Or it is because they had too many kids.

Although it is true that all of the above can be factors to incontinence, the main culprit is due to some muscular component, whether it be the muscles in the pelvic floor being too weak or too overactive.  Our pelvic floor is muscles shaped like a bowl inside our pelvis that provides support to our organs to ensure a proficient way to expel our undesired excrement and keeps everything inside, among many other duties.

But like all muscles in the body, they are supplied by nerves.  And nerves run from our pelvis to our feet.

If a nerve is restricted, compressed, or compromised in any way, then the muscle will become under or overactive, as well.

Let’s go on a tangent.  I love to go on tangents…. just ask my co-teacher, Sara Sauder, who sees me do it all the time in our educational courses.

Let’s start with the sacrum, particularly the nerves from S1-S3.  They give rise to the posterior femoral cutaneous nerve which supplies our sensation to the female labia majora (the skin fold that surrounds our vaginal opening), parts of the scrotum and penis, and the back of the upper thigh and leg.

Nerves can be very gossipy and interact with other nerves.  Like plant roots, they can grow and connect to other nerves.  And the posterior femoral cutaneous nerve has been commonly known to connect to the pudendal nerve (S2-S4) and the sural nerve (L5-S1) through what is called, communicating branches.

The pudendal nerve supplies the majority of the muscles in the pelvic floor.  They assist with us being able to hold our urine in when we sneeze or cough among other things.

pudendalnerve2.jpg

The sural nerve starts below the knee and reaches all the way to the outside of the foot.  This nerve is commonly used for neural stimulation (similar to electrical stimulation) to assist with many bladder dysfunctions.

suralnerve

The take home message is this…..nerves need a stable environment to work properly.  If there is any hitch, catch, injury…. this can cause a snag that affects the whole nerve. 

An ankle sprain.

A back injury.

High arches in your feet and not wearing supportive shoes.

Pain at your sit bones increased with sitting.

Knee injury.

Burning with urination.

Painful ejaculation.

This huge array of traumatic injuries and repetitive microtrauma can result in a compromised nerve making it very pissy.  Meaning you can start having pain anywhere above or below where this nerve irritation is located.  And before you know it, you have plantar fasciitis on your left foot.  And you also notice your urinary leakage with coughing has slowly increased from monthly to daily.  It is a domino effect.

Don’t discount these parallelisms, this isn’t just chance.    

So, if you suffer from plantar fasciitis, Achilles tendon pain, or heel pain…. find a practitioner that will assess you all the way from the foot to the back.  Because if they aren’t doing this, they could be missing a big piece of the puzzle in managing your care.


Now, an attempt to share a moment from my personal life:

I am a true blood Houstonian. I was born and raised in Houston.  Nothing has been more devastating than watching the destruction my state has suffered this past week.  My mother, who still lives in Houston, was fortunate to not flood. But she had refused to leave her home.  One of her greatest or smallest (for that matter) attributes is not cooking or having food in her house.  I talked to her the day before Hurricane Harvey hit and asked her what she had done to prepare herself.  She said, “I will be fine. I bought 10 sausage burritos for $4.00 from McDonald’s.” Who has ever heard of anyone preparing for a Category 4 Hurricane this way you ask?  Well, my mother, of course!  About 3 days into Houston being flooded and not being able to leave her house, she admitted she was getting tired of those sausage burritos.  Luckily, she had neighbors that were gracious enough to share their food with her. 

Blessings and prayers to all my fellow Texans! 

And Floridians…..please be careful and evacuate if required with impending Irma on her way.

How to Talk to Your Therapist

Most of my patients like me.  I take pride in that.

I’ve had some patients that haven’t liked me.  Very few.

Let me tell you why I think some patients haven’t liked me.

  1.  I know for a fact a woman didn’t want to see me because on her first (and last) visit with me, I put my hair in a ponytail, rubbed hand sanitizer on my hands and put on my gloves.  She thought that was dirty.  I was young.  So young (and still am).  I had just taken a course that said “Put your hair in a ponytail, rub hand sanitizer on your hands and then put on your gloves.”
  2. One woman saw me and on her first (and last) visit with me she complained that she couldn’t tolerate the smell of the disinfectant I had used to clean my room.  She also didn’t like the way our air filters smelled.
  3. Very early on in my practice I wasn’t helping a patient get better.  She felt worse after each treatment.  I wasn’t listening to her and I wasn’t willing to modify my treatment plan.  In my eyes, she was the problem because she wasn’t being patient and she was complaining too much.

Listing only three patients sounds conceited, right?  Yeah, it does.  But I have to tell you that these three patients made an impression on me.  These were patients early in my career and I took the feedback hard.  I am not a people pleaser in any way.  I am not.  I am probably, actually, an extremely selfish person.  But, it’s that selfishness that drives me.  I want to be good.  I want to know everything possible.  I want to give excellent care. That makes me feel good. It is this need to feel that I’ve done everything I can to help my patients that drives me – this selfish need, not any form of selflessness.    I’m sure there are other patients that haven’t cared for my services, but they didn’t make this clear to me.

Now, let me tell you why I think most patients like me.

  •  I listen:  Listening is active.  Yeah, yeah, that’s good Ted talk material, right?  “Listening is active.”  Now take a moment to let that sink in.   That is so cheesy that it makes me a little nauseous.  When I say this, what I mean is more than just “be present” when listening.  What I mean is that when I listen to my patient, whether it’s the first time I’m hearing their story or I’m listening to a concern, I want them to know I heard them.  I will often say, “I just want to make sure I’m picking up what you’re putting down.  So you are saying that ABCDEFG made HIJKLMNOP?  And then QRS made TUV turn around and WXYZ?”  And the patient will say “Yes!” or they will say “No, no.  ABCDEFG turned INTO HIJKLMNOP which caused an infection three months later in the QRS which was treated for TUV.  And that’s why my doctors say I have WXYZ.”  And I’ll say “Got it.” Or, if I don’t understand, I’ll say “Ok, I apologize that it seems like I’m not understanding this, I just want to make sure I really get the picture.  So…we’re just talking about the alphabet???”

 

  •  I work with them.  If a patient needs a patient advocate in their medical team – I’m there.  It’s a win win win.  The doctors get to know me and what I know and I get to know them and what they know.  The patient feels supported and knows that they don’t have to know all the medical jargony critical thinking stuff and they feel that they now have a representative that can speak on the same playing field as the doctor.  Because Lord knows, sometimes doctors just don’t think patients know what they are talking about.

 

  •  I brainstorm.  If a patient isn’t improving in the amount of time I think they should be improving, I take a step back, very literally, I stare at the patient and I just think.  I brainstorm.  I get diarrhea of the mouth – which isn’t necessarily a good thing.  I’ll pull out a piece of paper and say, “Ok, these are the things that could be going on.   If it’s “Thing One”, then these are the three things that can be done about it.  I’m capable of doing one of those three things, your doctor is capable of doing the other two.  If it’s “Thing Two”, we won’t actually know if that’s causing your issue unless this procedure is done first.  Here are the risks and benefits of doing that procedure.  If it’s “Thing Three” then you have these five options.  Now, which “Thing” would you like to explore first?  What questions do you have?  What worries do you have?  You look really worried, I can see it on your face.  What’s your concern?

 

  •  I change.  If I know exactly what’s going on with a patient and I know exactly how to treat it, but the patient doesn’t like the treatment approach.  I tell them I can change what I’m doing.  I tell them the pros and cons of changing my treatment approach and I let them decide how they move forward.

Here is my advice on how to talk to your therapist:

Start by telling them what you appreciate about their care.  If you don’t appreciate anything, like, not anything at all…just move on to another therapist.  If you do appreciate some things, let them know.  They are people too.

Tell them your concerns.  Be honest.  You are in a professional relationship with your therapist just like you are in a professional relationship with your attorney, your accountant and your hair stylist.  You would tell your attorney, your accountant and your hair stylist your concerns, right?

If you think your therapist gives you waaaay too much time to remove clothing before treatment, let them know.  Tell them that you change really quickly so you can have a bit more time in actual treatment.

If you don’t think your therapist truly hears what you are saying, tell them that you might not be communicating as effectively as you thought you were.  Tell them you want to try to tell them about your symptoms in another way.

If you worry that your therapist is just going through motions with you, ask them what other treatment options are available.  If they say “this is it”, then give them a big smile, quietly pick up your things and leave.  Make sure your make a fist with one hand, allow the index and middle finger to stand straight up, cock your head to the side and say “Peace!” with a little bounce in your whole body.  But, lower your voice when you say it and put some umph in it.  Then find yourself another therapist.

Update on the video on how to correct your pelvic alignment.  We completed shooting last week.  The video is now in editing.

No, that is not me.

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]  If you’d like to be added to Alcove Education’s list serve, let me know!

How to Look and How to Talk Part 1

The three main topics readers email me about is 1) pelvic alignment corrections 2) finding a therapist and 3) how to communicate with their therapist.

Well, guess what?  I’m going to write about two of these.

Finding a therapist is hard.  Finding the right therapist for you is even harder.  Physical therapists are a dime a dozen.  We are everywhere.  We are in big cities, small towns, on boats, in running groups, on planes and under rocks.  Our schooling is different, our mentors are different, our philosophies are different and our drive is different.  This makes for great therapists and shitty therapists.

But then, you dive deeper and need to find a physical therapist that is super niche.  The elusive pelvic floor physical therapist.  You think you have found one, but alas! he or she only treats a pelvic floor patient once every three months.  Are they appropriate for you when you are struggling with pain?  Then you search harder and find a true pelvic floor physical therapist about a 45 minute drive away.  You figure out how you are going to drive out there or you get someone to drive you there while you lie in the back seat and then you get a call that this therapist, this one therapist that knows how to treat your specific issue – has moved.  Out of state.

What do you do in this situation?

You ask around.

Call legit pelvic floor physical therapists that work in specialty pelvic floor physical therapy clinics across the country.  Ask them if they know of anyone appropriate for you in your area.  The pelvic floor physical therapy world is small.  So small.  Too small.  Not only that, it’s tight.  I’ve revealed intimate parts of my life to some pelvic floor physical therapists whom I’ve established an online relationship with and have only met once so far!  Ok, that does sound creepy.  We aren’t dating.  We are just friends.  And, it’s more than one person.  Pelvic floor physical therapists get along because as I’ve mentioned in previous posts, we are weird.  We love going to work doing what we do.  Our family doesn’t understand why we love it.  Our friends don’t understand why we love it.  Only we get it.  That’s a bond that can’t be broken easily.  So, I’m saying we know each other.  I know good therapists on both coasts and most of the states in between.  And, if we don’t know someone in your area, because you live somewhere super remote, undesirable, not identified on a map, off the grid, in the ocean or in a country we are at war with…we have resources to help you find someone.  Don’t despair.

If I don’t know someone in your area, after I email my sources, I end up looking through these resources:

  • The International Pelvic Pain Society’s member directory.  Go to www.pelvicpain.org, click on PATIENTS tab and click on Find a Provider.   You’ll find people by state (and country).  I love this organization,  So why do I love the International Pelvic Pain Society?  I love it because the conferences cover material for male and female pain.  I love it because the focus is on pelvic pain.  I love it because a variety of disciplines give their take on why pain occurs and how to treat it.

 

  • The International Society for the Study of Women’s Sexual Health.  Go to www.isswsh.org and click on Find a Provider.  This is a good resource even if you are a man in pain because if a provider understand’s female sexual pain, then they likely understand the pelvic floor quite well.  I love this organization because they get into the nitty gritty details and they are super specific.  I like variety and I like specificity.  I like it all.

 

  • The American Physical Therapy Association’s Section of Women’s Health:  Go to www.womenshealthapta.org and click on PT Locator at the top right side of the page.  You will find physical therapists who are members of the Section of Women’s Health and you will find their self-proclaimed specialties.

My two cents: Finding a therapist that actually goes to conferences with physicians and nurses is incredibly important.  This means that they are seasoned enough to want to move beyond educating themselves via only pelvic floor physical therapy classes alone.  It means that they are in a place to be able to analyze a wider breadth of information that isn’t necessarily in their scope of care.  It means they can talk to other providers and have a solid foundation on which to have an effective conversation.

When I go to their conferences (or any conference, really), I wear camo because I am on the attack.  Anyone who has ever been attacked by me knows exactly what I’m talking about.  Dr. Irwin Goldstein was attacked at IPPS years ago.  I lingered awkwardly as a swarm of physicians came to shake his hand.  When they left, I leapt toward him.  Dr. Andrew Goldstein was accosted by me on the phone just prior to that.  Dr. Lee Dellon was stormed while he waited outside of the bathroom for Dr. Jerome Weiss.  Dr. Jen Gunter was charged at the end of a day while she took last minute notes on her lab top.  I dawdled, then pounced!  It didn’t leave much of an impression on her, I’m sure, because she is a bit of a tigress herself.  I take my tough patient cases and find someone that can give me some ideas.  I get their email and then I attack! attack! attack! them with more questions.  I pick their brain.  I do this with tons of people.  I need to hear all ideas before I decide how to proceed.  Through this military technique I’ve really been able to dig deeper in figuring out the why’s of patient issues and the how’s of addressing them.  And on the plus side, I’ve developed wonderful professional mentors through this type of warfare.

You need to vet anyone you consider going to, regardless of what organization they are a member of.  Let me tell you why.  Being a member of an organization means you write a check and nothing more.  Being active in an organization is different.  Attending conferences is different.  But writing a check is merely writing a check.  It is a resume booster and it looks like you are way more knowledgeable than you might actually be.  Learn how to talk to your therapist in part two.

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]  If you’d like to be added to Alcove Education’s list serve, let me know!

Pelvic Floor Podcast – PT Below the Waist

No, it’s not mine.

But it is about the pelvic floor, it is a podcast it is by two colleagues that I have a lot of respect for.  You may not have heard of Jamille Niewiara and Jessica Chastka yet, but you will soon.  They are two of my co-workers at Sullivan Physical Therapy here in Austin, Texas.  They have created a podcast called PT Below the Waist and they will also be teaching a new course for Alcove Education.  (A basics course for beginners addressing incontinence AND pain, vaginal AND rectal work – in case you are interested in knowing more….)

PT Below the Waist will cover everything related to the pelvic floor and it will cover information for all genders, all diagnoses and it will use all the words, not just the appropriate ones.  I’m so proud of them and wanted to support them by spreading the love on this post.

PT Below the Waist can be found wherever you find your podcasts.

If you have any questions or comments, please leave them anonymously in the comment section or email me at [email protected]  If you would like to be adding to Alcove Education’s list serve, please let me know.

How to Correct Your Pelvic Alignment VIDEO

The post I wrote years ago titled How to Correct Your Pelvic Alignment is the most popular post I have written.  While it is heavily doubted among many healthcare providers that you can have a problem with pelvic alignment or that it can be corrected at all – I cannot begin to tell you how many patients pelvic alignment correction has helped.

Because there has been so much interest in how to correct pelvic alignment, Alcove Education, my continuing education company, is in the process of creating a video on how to do this.  This will be a professional video for purchase.  We are finding a production company that can do this and will begin filming as soon as we are able.

I have no clue when this will be available, but if I have things my way, I’d like it to be ready before the end of 2017.

Please email me at [email protected] if you have any questions or comments or leave them anonymously in the comment section below.

You Don’t Need to See a Gynecologist Anymore

Except…you do.

Many women who have had a hysterectomy are told that they don’t need to return to their gynecologist because they won’t need PAP smears anymore.  This makes me s/mad because gynecologists do more than provide PAP smears.  Except…some gynecologists don’t know that.  Gynecologists are vulvovaginal experts.  They are who you go to if you are a woman with a sexually transmitted disease, they are who you go to if you have a vulvovaginal infection and they are who you go to to get your vulva screened.  ‘Cuz, believe it or not, you can develop vulvovaginal issues without a uterus or cervix.  It’s true!

Lately I’m seeing an increasing number of women who aren’t getting proper vulvar screening after a hysterectomy.  Looking at the vulva – actually, having someone else look at the vulva is vital.  Lots of issues can result overtime, unnoticed and ominous in nature.

Please, allow me to list my two main grievances:

Grievance One:  The vulva must be checked after hysterectomy because women go through menopause.  When a woman goes through menopause, her sex hormones drop.  When sex hormones drop, the genitals can shrink.  Some of this shrinkage doesn’t create any symptoms.  Other times, the shrinkage causes pain or becomes dysfunctional.  The clitoris can get really small and painful.  The labias can start to resorb into the rest of the vulvar area.  The opening of the vagina can get really sensitive.  The genital tissue can get dry and thin and can crack easily creating pain, bleeding and more avenues for true infections.  And then there are the mock infections.  When the external genital area on a woman (the vulva) and the inside (the vagina) shrink and wither, this is called atrophy.  This can create pain with pressure or friction in the vaginal canal.  This can feel like painful sex or painful gyno exams (that you aren’t having because you have been told not to go to the gyno anymore) and painful sitting even!  But, you won’t know why you have these weird feelings because no one is inspecting your genitals anymore.

Grievance Two:  Your vulva has some skin.  Between your legs there is skin!  And skin can have skin disease!  So, the biggest ones you will hear about are Lichen Sclerosus and Lichen Planus.  These can cause shrinkage, resorption and/or disappearance of parts of the genitals.  These disease processes, if left undiscovered and untreated can create pelvic pain.  They can also do crazy things like, in the worst cases, close the opening of the vagina.  In some cases these skin diseases can even cause cancer.  But, again, if you stop going to the gynecologist to have a thorough vulvar screen, you may never know what’s going on.

How do I know this happens?  Well, because I see it.  I see it in my clinic.  I’ve had women who haven’t had anyone, not just a gyno, but any experienced eye look at their vulva in seasons, nay – years, nay…decades even.

So while it’s encouraged, awesome and neat that women are looking at their own vulvas more, what is additionally necessary is that a discerning healthcare provider look at the vulva too.  In the most extreme cases – it could save your life.  In some of the less extreme, but still extreme cases, it could save your quality of life.

And that is that.

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]  I will respond to them, I promise, I’ll get my rear in gear and do it.

If you would like to be added to Alcove Education’s listserve, please email [email protected] with this request.

Causes of Persistent Genital Arousal Disorder (PGAD)

There are several causes for Persistent Genital Arousal Disorder (PGAD), none of which include watching porn all day.

When you think about discerning PGAD from other pelvic pain diagnoses or symptoms, the causes truly don’t differ tremendously. So, why is there a splash of pleasure or arousal involved? Because the symptoms are coming from the genitals. The genitals are where you experience arousal.

Some say that, however, is not true, or not entirely true. Some say that there is a misfiring or even crosstalk in the brain’s pleasure and pain centers. I don’t doubt this. I think this, as in all cases, is likely true for some people.

The causes of PGAD differ for everyone. What I summarize are likely just some of the possible contributions.

The Why?

  1. Pelvic floor muscle overactivity
  2. Connective tissue restriction
  3. Trigger points
  4. Pressure from pelvic congestion or cysts
  5. Skeletal system

Does any of this sound familiar? If you’ve read every single post I’ve ever written about the why’s of diagnoses, they are pretty much all the same. That’s because the same culprits can cause different symptoms in different people. However, the same symptoms in different people can stem from a variety of combinations of these culprits and these culprits can be found at different aspects of the body.

For example, the pubrectalis muscle can be overactive in one person creating symptoms of PGAD, however the ischiocavernosus can be overactive in the next person, yet both people can feel the most intense PGAD symptoms in their clitoris.  Isn’t this horribly complicated? That’s why it’s so important for you to understand your symptoms, where they can be coming from and to have good communication with your providers. Sometimes, us providers, we are awesome and we can figure it out, but sometimes we are one-trick ponies. Make sure you aren’t being treated by a pony. Cuz that’s…weird.

Want another example? Okay.  Sometimes the PGAD symptoms are coming from the spine. Starting as high as where the thoracic spine meets the lumbar spine are nerves that can generate symptoms at the genitals. If you don’t know where the thoracic spine meets the lumbar spine, that’s just around where the back of the bra strap sits. Oh, you don’t wear a bra strap? Then use Google image. Don’t make this hard for me.   I’m writing this blog for free, dammit. Did I digress? I digressed. So spinal levels anywhere from up by the bra strap downward can cause problems with the nervous system that can create PGAD symptoms. But, if you only think to assess one or two spinal levels, then you might miss the root of the problem. The call could be coming from anywhere.

What to know why the possible causes are the possible causes? Okay again.

Pelvic Floor Muscle Overactivity:  Whenever you are in pain, your muscles will tense up to protect you.  Whenever you are stressed, your pelvic floor muscles, specifically, will tighten.  This tension can create a lot of unexpected symptoms.  Many people have made a habit out of holding their pelvic floor muscles tense for years and years.  This is what we call a “holding pattern”.  It’s your body’s own muscle memory to tense up the pelvic floor muscles.  But, really, it’s not just the pelvic floor muscles that we’re concerned with in this situation.  A “holding pattern” of holding your abdominals, buttocks or inner thighs is going to consequently tighten your pelvic floor as well.  It’s just how we’re all wired.  These overactive muscles can cause seemingly unexplained bladder, bowel and pelvic pain symptoms.  When the pelvic floor muscles tense up, this amps up the part of your nervous system that tells your brain that you have an urge to urinate.  This is a false urge.  When the pelvic floor muscles tense up, it can keep you from emptying your bladder completely or it can weaken your urine stream.  When the pelvic floor muscles tense up, bowel movements can become more painful and/or more difficult and/or less frequent.  And finally, when the pelvic floor muscles tense up, this can basically choke abdominal and pelvic nerves.  It’s like a nerve impingement in your neck that can cause a zinging down your arm.  It’s the same thing, but it’s in your pelvis and the zinging sensation can go through your labia, your clitoris, vagina…wherever.  Many people also say they feel pain down their leg or in a foot as well.

Connective Tissue Restriction (the cable knit, full body leotard):  Connective tissue* is a layer under the skin and over the muscle and it is the only part of our body that is literally connected from head to toe.  That bit of information is extremely important.  So think of your connective tissue like a cable knit, full body leotard.  Yes, that sounds really hot – temperature-wise, not sexy.  Actually…can we sit on that image for a second – a sexy cable knit leotard…picture it…did you get a little satisfaction from that? Really, the cable knit part is important in my analogy.  Imagine a loose string in cable knit.  If you pull that string, you are going to get puckering at a place not necessarily close to the string.  The puckering could be far away from the pull of the string.  This is exactly what can happen with connective tissue issues.  You may have some tension, scar tissue, tightness, poor blood flow to the surface in one specific area and you end up having pain somewhere else because of it.  What I see most often is that there are issues with the connective tissue in the abdomen or inner thighs that ends up effecting pelvic pain.  Does that make sense?  I love the cable knit and the leotard explanations.  Neither of them are originally mine – I combined two really great examples…into one fabulous fashion statement.

*I can’t think up a better definition than Pelvic Health and Rehabilitation Center’s definition of connective tissue.  I send some of my patients to read this post because it’s so thorough and well written.

Trigger Points:  Trigger points can be the cause of some pelvic pain symptoms, especially if they are on the abdomen, thighs, buttocks, low back, external pelvic floor muscles or internal pelvic floor muscles. When a trigger point is pressed on, the pain may be at that specific site under the finger or it may also go to another part of the pelvis.   Trigger points can be worked on by yourself or by your therapist.  Trigger points that are really stubborn might do well with trigger point injections.

Pressure: Anything placing pressure on a nerve can create pain along the course of that nerve. If the course of that nerve goes to the genitals, then you are going to have a problem. But, what causes pressure? I’m going to say for the case of PGAD, it’s going to be mainly a cyst or a hyperdilated blood vessel. A cyst can form and grow and eventually place pressure on a nerve anywhere in the body, anywhere along the course of the spine and sacrum. A hyperdilated blood vessel can be a sign of pelvic congestion. This means that pelvic blood vessels have created varicosities, like you often see in the legs. These varicosities are widened blood vessels and they can place pressure on pelvic nerves.

Skeletal System: The body needs a thorough skeletal exam from the thoracic to the sacral spine and from hip to shining hip. But, don’t stop there, if something wonky is happening at the neck, then that can affect the thoracic and lumbar spine and the hips. Hence my suggestion of a thorough skeletal exam. Don’t let someone suggest that your neck and shoulder issue are completely and absolutely unrelated to your spine. So, if one domino is not moving correctly, this can affect what happens to the nerves coming out of the spine that talk to the pelvis or the pull of the muscles coming from the hips and thereby affecting nerves in the pelvis.

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]

If you’d like to be added to Alcove Education emails, please notify my at [email protected]

Persistent Genital Arousal Disorder (PGAD): Pleasure Spiked with Pain (and music is my aeroplane except I’m not going to be sitting long enough to go on a trip for some time so let’s use another word for this simile…mmmkay?)

If I’m honest, I first heard of this diagnosis in early 2013.  If I’m not honest, I’ll say that I’ve known about this for years and years, daaaahling (hair flip).

When I talk about PGAD to professionals, providers, my friends, they always open their eyes wide and giggle.  They are thinking that persistent genital arousal sounds awesome.  They joke that they want persistent genital arousal.  But then I get into the details and the impacts it has on your family life, your social life and your capacity to wear pants and then they don’t want this “disorder” any more.

So, it’s 2013 and I’m fascinated by the description I’m hearing.  It reminds me of the story of a woman who was constantly having orgasms.  She made it into the “weird news” sections of magazines and radio shows.  She had a real health issue, but her story was turned into a spectacle.  She would have orgasms brushing her teeth – or that’s the story they told.

But she probably never orgasmed.

PGAD has a super hazy definition.  It’s comprised of different symptoms:

  1.  Unsolicited arousal in the genitals or maybe just one part, like the clitoris
  2.  A mix of pleasure and pain with the arousal, mostly pain though
  3.  It would seem as though having an orgasm would make this annoyance go away, but it probably just intensifies the discomfort
  4.  There may or may not be a bladder or bowel component to it

Can I break this down now?

Unsolicited arousal in the genitals or maybe just one part, like the clitoris.  If you’re home alone and feeling some random, short-term unsolicited arousal, you might think “Alright, let’s do this!”, but no.  That’s not how this works.  This is a constant feeling of genital arousal.  That means your genitals feel aroused when you are talking to your parents on the phone.  Your genitals feel aroused when you are in traffic.  Your genitals feel aroused when you are holding your child.  Your genitals feel aroused when you are at a funeral.  No one wants this.  It fucks with your head.  It makes you anxious.  It makes you wonder what kind of human you are.  It’s really out of your control.  It’s unsolicited.  So this cycle of worry and fear and insecurity evolves into a bigger state of panic for your nervous system…which only feed the PGAD.  It’s like a monster that eats its own shit.  What it does to your nervous system as a result of its presence is precisely what feeds it and makes it stronger.  So how do you break out of this?

You break out by getting good help.  Not just “help”.  But good help from providers that understand PGAD.  When you understand the different causes of PGAD, then you can get the right help.  Like anything else, several different factors can cause this.  I will go into the causes in the next post.

A mix of pleasure and pain with the arousal, mostly pain though.  Pleasure spiked with pain.  Or, pleasure stabbed with a thousand knives and music is not my aeroplane because I cannot sit long enough to withstand an aeroplane ride and I don’t live in the UK so if I could tolerate a long trip I’d say I’m going on an “airplane”.  For some people, it starts with a mild feeling of pleasure, then it morphs into pleasure and pain, then it turns into just pain.  It evolves.  Persistent Genital Arousal Disorder is kind of a misnomer in a way.  It should just be called Persistent Genital Pain Disorder, but PGPD doesn’t roll off the tongue.  The pain can amplify with pressure on the genitals, but, it also might feel better with the right kind of pressure on the right part of the genitals.  Does that make sense?  So, wearing pants can hurt or sitting can hurt, but putting mindful, direct pressure on a very specific location of the genitals might actually feel relieving.

It would seem as though having an orgasm would make this annoyance go away, but it probably just intensifies the discomfort.  It makes sense.  If you feel slightly aroused, or like you have “blue balls”, then masturbating or having sex to orgasm would probably make your arousal sensation go away.  But, with PGAD, because your pelvic floor muscles may be chronically tight, so after an orgasm – which is a bunch of pelvic floor muscle spasms – the genital discomfort probably gets worse.  So that lady in the “weird news” brushing her teeth, she probably just had pain and arousal, but knew at that point not to try to orgasm.  She wasn’t going around orgasming one hundred times a day.  She was going around in a constant state of pain, embarrassment, confusion and despair.  There was no pleasure.

There may or may not be a bladder or bowel component to it.  Based on the cause of each individual’s PGAD, a full or empty bladder or bowel can change the pain.  Some people feel better when the bowels are full.  Some people feel better when the bladder is empty.  I think this is mechanical.  It has to do with pressure on a nerve or stretch of a muscle.  If a tight muscle is a problem, then stretching it via full bowels might create some relief.  If a nerve is a problem, then placing pressure on that nerve might increase discomfort.  Of course I’m simplifying this, but it doesn’t make any of what I’m saying less true.  And this right here, this idea of pressure or stretch – all of this mechanical talk (as if we are cars) – is why I believe everyone can get rid of their pelvic pain.  You don’t have to agree with me.  The person next to you doesn’t have to agree with me.  Your doctor and your physical therapist don’t have to agree with me.  But, I agree with me.  The body is not magic.  Your pain is not magic.  There is a cause and there is an effect.  We must find the cause to fix the effect.  Period.

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]

Email me if you’d like to be added to Alcove Education’s mailing list.

“I really want to create a community.”: Interview with Shelby Hadden Part 3

tightly-wound9.  Has your pelvic floor issue ever made you want to do something harmful to yourself?

Shelby:  Ugh….yeah. [silence] Uh, yeah, there was a moment where I did try to hurt myself.  Uh.  I don’t want to go into specifics of what I did. [silence] But I just…I felt so hopeless and so mad at my body that it couldn’t do what I wanted it to do and I was working so hard and I didn’t feel that I was ever going to get better or ever find someone who would be patient with me and work with me on it. And it makes me really sad to think about that moment. And it makes me sad to think other people feel that helplessness with conditions like this. Because it’s a lot! It’s your physical body. Your ability.  Your limitations on your body.  Intimacy.  Love.  Rejection.  Connection.  It’s all of these really – vulnerability.  It’s all these big emotional things tied to one body part and it can be really, it can be really, really hard and hopeless sometimes.

10. Did you ever meet anyone else that had a similar issue with their pelvic floor?

Shelby:  Yeah, I’ve actually had a couple friends with vaginismus.  They didn’t seem to have it as badly as I did. Both of those people could use tampons. It didnt take them very long with some dilator work. They used dilators for a couple months and they were able to have sex. It was frustrating to see someone with my same issue, but not as severe.

I have a close friend who has vulvodynia and that’s really – vulvodynia is really tough too. She and I are really sad that we have each other, but so grateful that we have each other. I say “sad” because we are sad that we both have this, but we feel really grateful because people don’t get it. They just don’t get it! They don’t know what to say and they want to fix you.  So, she and I have had lots of long conversations.  She has a committed partner so her situation is different from mine.  But, we both say to each other “Hey, my situation is not worse than yours and yours is not worse than mine.”  We just try to “check” each other and validate each others’ feelings.  Sometimes, you know, I don’t know, feel better about myself,  I would say “Well, at least I don’t have the pressure of having a partner in my life” and she would say “Well, you know, I’m so glad I have someone who loves me and I don’t have to be dating and having these encounters.”  I’m really grateful to have that support system with her.

11. What are you looking to accomplish in making Tightly Wound?  

Shelby:  I really want to create a community – I want to start a conversation – I want women, or people who have vaginas – to feel less alone when they have these experiences. Ever since the essay’s been out, ever since the Kickstarter’s been out – people have been coming out of the woodwork. People that I barely know or people that I used to know – they really connect with it.  People have a similar condition or a physical conditions have had similar experiences like I’ve had.

You know a lot of people just feel really inadequate when it comes to sex and dating.  So, I think a lot of people are really happy that I’ve started this dialogue.

I think a lot of people have had long journeys in finding treatment for their conditions and have been frustrated with doctors. We are all kind of trained growing up to “trust” doctors and go to doctors. They [doctors] have the solutions.  But, they don’t have the solutions.  They’re just people.  When they can’t deliver, we get very disappointed and very frustrated.

I want, let’s see, what else do I want to accomplish?  I want people to know about conditions like mine so when people say “Hey, I have this thing…” the partner can say  “I’ve heard about it.  I have a little insight.  I heard someone’s personal story and that gives me insight into how you might be feeling right now and I can be empathetic to that.”

What else do I want to do? Maybe help people find that there is treatment out there.

12. What do you want doctors to know?

Shelby:  I want doctors who are unaware of pelvic floor dysfunction to know that there is treatment out there and that they need to help people – point people in the direction of treatment.  They don’t have to give the answers.  Some doctors I saw tried to give me answers when I wish they just said “You know what, I don’t know.  Why don’t we try to find someone who does.”  I want doctors to know how traumatic some of their reactions and some of their practices can be.  I want doctors to be empathetic and to slow down sometimes.  There’s a lot of problems with the healthcare industry.  I know they need to go fast and meet their quotas. But, we are people and some people are really suffereing with things and we need some time.  What I love about my doctor now is that she really, she doesn’t tell me to “relax”.  You don’t tell someone if they are scared or if they are anxious to “relax”.  She will coach me through my breathing.  She will just wait.  She will talk about something else. When she does that, it makes things so much more bearable.

13.  What do you want others with pelvic floor issues to know?

Shelby:  I want them to know that they are not alone.  I mean, the more I put this story out there, and I feel that it’s still at the beginning, the more I realize how true that is.  That is really empowering to me.  I wish I could really communicate that.  I wish I could [sigh] give that piece of mind to people who feel really alone. I want them to know that there is treatment out there and everybody needs to find the treatment that works for them.  Usually it takes a team of professionals and it takes time, but I believe that everyone can eventually find what they need.

14. Where are you now as far as your pelvic floor issues are concerned?

Shelby:  I am, I kind of mentioned this earlier, I’m kind of coming out of physical therapy and counseling.  I don’t have to go as often now, I’m kind of at a maintentance point instead of trying to progress – which is really cool.

I think my anxiety has gone down quite a bit.  I think telling this story and talking about it has been so healing.  My counselor has been really supportive of it, just for what she does in helping me do this part of it.  Things are going really well for me and I think by putting myself out there and putting my story out there I’m being my most authentic self. I think that when you are your most authentic self you set yourself up for your best possible self. The universe kind of provides a little when you are giving your best.

15. What else do you want to share?

 Shelby:  What else do I want to share?  I guess a lot of people call me “brave”, which, I “get”.  I would say that to someone who was doing the same thing.  It does take a lot of courage, a lot of strength.  But, really, it comes down to – I don’t really feel like I’m being brave.  I feel like it’s just something I have to do.  I’m kind of like, “called” to it.  It feels right, it feels like the right time to do it.

I’m proud of myself for sure.  I wish I could go back in time and hug the fourteen-year old version of myself and tell her “It’s going to get better.  It’s going to be crazy. And you’re going to tell people about this.”  For a long time it was my deepest, darkest secret.

I guess, just, I really, really care about getting this story out there and making this film.  It’s going to be a great film.  I really appreciate anyone’s help in getting this out there.  Sara, I really appreciate you writing this blog.  I appreciate you coming on as an associate producer. I’m really excited to see where this goes.

My continuing education company, Alcove Education, is acting as associate producer because we could not not attach ourselves to this project.  Shelby is currently raising money to complete this film which is a fifteen-minute visual essay.  If this film project touches you and you have the means, please consider a donation of any kind to her Kickstarter project here. (<— click this word) If you don’t have the means, but it still touches you, please share the trailer here. (<— click this word) If you want to read the essay she wrote for BUST magazine, you can find it here.  (<— click this word) If you feel that she speaks to your situation, please show the trailer to your healthcare providers.  It will give them a glimpse into your experience.  That’s all we can really ask for, right?  In life.  Some sort of empathy.  Some sort of shared experience.  Some sort of validation.

If you have any questions, please leave them anonymously in the comment section below or email me at [email protected]

“She forced the speculum in while I was screaming and crying”: Interview with Shelby Hadden Part 2

tightly-wound3.  Sara:  What are some of the diagnoses or responses you heard from doctors when you went for examinations? 

Shelby:  I saw a lot of doctors. I’m trying to think where to start…umm…I had some who told me to just “relax”, which, is hard to do when you don’t know how to do it and you are bracing for a lot of pain. I had some dismiss me, or dismiss it as being purely psychological. They insisted that it was caused by repressed sexual trauma and that I simply needed to see a therapist.

I had one refuse to examine me since she didn’t see the point because I wasn’t sexually active even though I was having problems with other activities.

I had some tell me to drink alcohol which makes me so angry because that’s not medical advice. If someone came in with back pain, no one would tell that person “Why don’t you drink some wine?” No. That doesn’t make you feel better. Alcohol doesn’t lead to looser muscles, it leads to poor decision making.  I think telling people to drink, especially when they don’t have a partner, it’s like, oh, if you’re at a party or want to be intimate with someone – that’s just like date-rape culture. I have a big problem with that.

I had one gynecologist tell me to buy the skinniest candles I could find and start practicing with those. Then the next gynecologist told me to use the candle when I’m on my period because you’re naturally lubricated because you are menstruating.* One…phew…one was sick of my knees snapping shut every time the speculum approached me. She had a nurse hold my knees down and apart while she forced the speculum in while I was screaming and crying.** I don’t know why anyone would think that would be okay, but that definitely happened.

4.  Sara:  How did it feel to not be in a relationship?  Did it make you question your own sexuality – not the potential to be with someone, but if you were not meant to be with a partner, in any way?  

Shelby:  Umm…it’s really – I’m a pretty independent person and identify as a strong feminist. But, we all seek love and connection and I want to experience that and I feel that everyone can do it except me. I want to be able to have someone to be a “plus one” to a party.  I want someone to call to just hang out with me. I don’t think there’s anything wrong with wanting that.

Yeah, sometimes I felt extremely asexual. And, even, I mean, there was a lot of fear thinking about sex.  A lot of fear.  A lot of anxiety.  Because, for one, for example, if your elbow caused you the most excruciating pain every time you touched it , then, you wouldn’t want anyone else to touch it.  But, if everyone is telling you “Oh, but you’re elbow, it’s going to give you the greatest experience you’ve ever had in your life.” And you’re like “No! I hate when that part is touched!  I can’t imagine anything touching it!”  It’s just a – it’s a very confusing thing in your mind. You are expected to only have pleasure from that body part, but you’ve only known pain.

Then there is the expectation of having been rejected so much that telling someone, or being intimate with someone is really, really scary. So I felt a lot that maybe I’m not a sexual person. I thought, maybe I am asexual. But, I think I am a sexual person that hasn’t had the chance to be sexual. That’s been tough, because when you are in your mid-twenties and you haven’t had sex and you want to, but you can’t, or you feel like you can’t, it’s very frustrating. And really hopeless.

5.  How many doctors did you see before you were directed towards your pelvic floor physical therapist?

Shelby:  I saw about a dozen doctors over the course of seven years. Which, when I talk to Kim Carter***, she said the average numbers are fifteen doctors for seven years. Mine are pretty in line with that. I saw them in a lot of different places. I moved a lot during those years. It was actually, really funny. I had gone to a gynecologist.  A new one one summer for my first pap smear. They were recommended to me by a friend who really liked her and she said “Hey, I know you have problems with exams, I really like this doctor.”  So I went to her and told her about my vaginismus and she said “Well, this woman came into the clinic yesterday and dropped off her card.   She is a physical therapist that works on the pelvic floor. She is new in town. I can’t say much about her, but maybe you should talk to her.”  And I did.  I called her and she became my first physical therapist.  I was one of her first patients. That’s when it all started and that’s when I was 21 years old.

6.  Had you seen any other pelvic floor physical therapists?

Shelby:  That physical therapist, when I was 21, it was the summer before I moved to Austin. I had two months with her. We had this deadline. It was like “Okay, try to use a tampon”.  By the end of the summer I was able to use a tampon. Like I said earlier, I took about two years off, I moved to Austin, had these experiences, found Sullivan [Physical Therapy] and worked with Christina. I’ve been with Christina since July 2015.  I’ve worked with Jessica while Christina was having her baby on her maternity leave. And then on winter break I went back to Tennessee and saw someone else in that physical therapy clinic. So I’ve seen four physical therapists and I’ve liked them all.

7. Have you ever been to counseling?

Shelby:  I am in counseling. When I started at Sullivan [Physical Therapy], Christina recommended I see a counselor.  I saw her [the counselor] once a week – up until now.  I’m going to counseling and physical therapy less now because I’m reaching some of my goals.

8. Did you share your experience with any of your family and how did they respond?

Shelby:  Well, for a long time I only talked about it with my mother. She was, well, she still is, she’s a nurse.  So, you know, I got my period.   My mom is the “expert” on being a woman, she is a medical professional – that’s what she was to me, both those things.

When I told her I couldn’t use a tampon, she said “It’s all about finding the right angle”.  She gave me a mirror.  She tried to coach me through it on the other side of the bathroom door.  She gave me a jar of Vaseline and she kept telling me to put more and more Vaseline on it.  I was like “I don’t think this Vaseline is going to help.  I don’t think it’s going in.”

It wasn’t until she went to a gynecologist appointment with me when I was 19 or 20 – oh! it was the one where they were holding my knees down and my mom was holding my hand and I was just crying. [Big sigh] I’m getting emotional just thinking about it because I saw it in her eyes that it was the first time that she recognized “this isn’t right, this is not normal, something is wrong here”.

She has been a big advocate for me. She has provided so much support. She has supported me using my dilators, or, at the time, the candles and, you know, she’s been such a big part of this journey…. I can’t really remember how I told my dad about this. My dad was paying for physical therapy and my mom told him that this was a thing that I need. I think at a low point I just told him “I can’t have sex.”

I’ve been so lucky my parents have been so caring and wonderful and supportive, you know, they’ve been really, really great about it. But, I do think it did freak my father out when I started being public about Tightly Wound. There was a time where he was a little bit mad about telling my story. And it is weird. As a father, you don’t want your daughter broadcasting that there is something wrong with her vagina and she wants to have sex and stating those things very openly. But, he’s really come around and has become supportive to the point of embarrassing.  He’ll comment on all my FaceBook posts like “So proud of you, honey!” And I’m like “Oh God, Dad, I’m talking about my vagina – please.  Don’t.” [chuckles] So, uh, they’re great. They’re great.

To be continued…

*Sara’s note:  Doctor fail. During menstruation you are not more “lubricated” just because of the presence of blood.  In fact, you are likely going to be less comfortable having sex because your body doesn’t lubricate as well with blood and it is not able to produce the same amount of natural mucusy lubricant that your vulvar glands produce for the purpose of sex.  Not everything that is wet makes for a good lubricant.

**Sara’s note:  There is actually a word for this, but for the life of me I cannot remember it.  I think it begins with an “I”.  If you know this word, please share it with me.  But, the word means that you are essentially abused during your medical care.  You are being forced into an examination or procedure that you are not comfortable with and your response to the examination or procedure is not being respected.  This “I” word is often used in the context of children receiving “care” (man I say that so loosely that the word completely unravels) that is traumatizing and to which they do not have the means to speak up against.

***Sara’s note:  Dr. Kimberly Carter is a physician in Austin, Texas that treats women with vulvar pain.

My continuing education company, Alcove Education, is acting as associate producer because we could not not attach ourselves to this project.  Shelby is currently raising money to complete this film which is a fifteen-minute visual essay.  If this film project touches you and you have the means, please consider a donation of any kind to her Kickstarter project here. (<— click this word) If you don’t have the means, but it still touches you, please share the trailer here. (<— click this word) If you want to read the essay she wrote for BUST magazine, you can find it here.  (<— click this word) If you feel that she speaks to your situation, please show the trailer to your healthcare providers.  It will give them a glimpse into your experience.  That’s all we can really ask for, right?  In life.  Some sort of empathy.  Some sort of shared experience.  Some sort of validation.

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]

“I WISH I had an STD!”: Interview with Shelby Hadden Part 1

tightly-woundShelby Hadden is the writer, director and producer of the amazing, touching, informative, provocative, unforgiving short, animated film about living with pelvic pain.  The film is called Tightly Wound.    I interviewed Shelby to learn more about the who’s, what’s and why’s of this film.

1.  Sara:  You’re vulnerable and honest in this film.  What got you to the point where you felt like you needed to tell your story?  Were there any reservations in telling your story?  Describe the process in your mind, where that first seed of telling your story, in any format was born.

Shelby:  So, for a long time, I’ve had this idea in my head that I wanted to make a film about vaginismus and I didn’t know what that would look like. I thought that going to a physical therapy session and doctor’s appointments sounded really boring to make a documentary into. Those things are not very cinematic. That’s such internal work. Even if it wasn’t taboo to look into someone’s pelvic floor, you wouldn’t be able to see it. I had been bouncing around some ideas in my head and all of them were bad ideas. I didn’t have too much of a fire to go after it yet. I definitely didn’t imagine that I’d be making a personal film. That was not on my radar.

But, a couple years ago, the guy that I mention in my film (that laughed in my face), that was a really big moment for me and that’s when I started going back to physical therapy. So, I had gone to physical therapy before I moved to Austin and it had been a couple of years.   I moved to Austin for grad school and you are so busy in grad school, I wasn’t thinking about my body. But this guy laughed in my face and it was really traumatic. It was really…it messed me up for a while. So I went to physical therapy and I was feeling so frustrated. It really came from a point of frustration that I decided to write it. I was frustrated with PT and I love my physical therapist to death, but physical therapy is a lot of work and it’s really hard and it was discouraging.   I was mad about that and I was mad about this guy that laughed at me and I was mad that I felt that I couldn’t date like a normal person. I felt like online dating or using Tendr, or the ways my friends can date or just explore their sexuality or whatever it is, I couldn’t participate in the same way.

I’m a filmmaker and the way I deal with things is by creating and telling stories. I started writing an essay and then in writing the essay I had the idea to make a 2D animated film. It has been a slow “coming out” process in a sense for the last year.

Last Fall, I was taking a women and gender studies class. It was called Feminism and Creative Non-Fiction and we had to write an essay for our final project that was creative non-fiction. I asked my professor if I could develop this idea and write it for this class and she was on board. She was great because she really let me work by myself and kinda work on my own terms since it was so personal. I did present it at the end of the semester to the whole class. I remember how scary that was. I’ve never been so scared in my life. I really thought I was going to throw up beforehand. I had everyone’s attention in the room and they were a really kind, compassionate, receptive audience. Then I submitted it to a women and gender studies conference at UT. I did that. And that was a little less scary. You know at that point, I had already brought on Sebastian who is my animator and we were talking about making this film. That was always a goal for about the last year or so. And then I got the BUST piece, kind of locked it in the summer. They told me they would be publishing it in the Fall. I had Bedpost [Confessions] and both of these steps are bigger and bigger audiences of putting myself out there in bigger and bigger ways.

It is definitely tough being this vulnerable and telling such an intimate, personal story. It’s hard. But, like I said before. I was mad. I was really mad. I was so alone. I felt that I had so much to say. Even my best friends with the best intentions don’t know what to say. They don’t…they’ve never had pelvic pain or sexual dysfunction or these attitudes towards sex and dating that I had and it was just painfully lonely. I wanted to put something out into the world without any interruptions – without somebody telling me it would be okay or that one day I would fine some guy who was going to make it all better. I wanted control. I wanted to have power in the situation and that was telling my story.  That was a very long answer.

2.  Sara:  Why do you think that your pelvic floor issues kept you from having a boyfriend?

Shelby:  I’ve never had luck dating. I never had a middle school boyfriend. I was always the last one asked to prom, if I was asked at all. So for a long time, the pelvic floor issue didn’t have any bearings on that. But then, as I got older and I didn’t have these experiences, I think it kept me from being confident. Which I think probably pushed people away. And then the guys I was dating…what I would tell them, as angry as I am at them, I don’t blame them because they’ve never heard of these things, so they don’t know how to react. So maybe the guy that laughed in my face felt just super uncomfortable. You know, I’m not trying to make excuses for them, but maybe if we talked about it, if we were all aware of it, people wouldn’t have these kind of questions, or they wouldn’t be afraid to ask, or maybe they wouldn’t be so afraid that they would just recoil and say “Nevermind! Talk to you never!” and leave. One of my friends recently found out that she has an STD. She called me and said “I think you are the only one that knows how scared I am for my future partners to tell them that I have this.” In my mind I was thinking “I’m so jealous! I WISH I had an STD! That’s something people know about it. They’ve heard of it so there is a framework for it.” I think all of that has kept me from having a boyfriend so far. Hmm.

To be continued…

My continuing education company, Alcove Education, is acting as associate producer because we could not not attach ourselves to this project.  Shelby is currently raising money to complete this film which is a fifteen-minute visual essay.  If this film project touches you and you have the means, please consider a donation of any kind to her Kickstarter project here. (<— click this word) If you don’t have the means, but it still touches you, please share the trailer here. (<— click this word) If you want to read the essay she wrote for BUST magazine, you can find it here.  (<— click this word) If you feel that she speaks to your situation, please show the trailer to your healthcare providers.  It will give them a glimpse into your experience.  That’s all we can really ask for, right?  In life.  Some sort of empathy.  Some sort of shared experience.  Some sort of validation.

If you have any questions, please leave them anonymously in the comment section below or email me at [email protected]

Tightly Wound: A Film About Pelvic Pain

tightly-woundYa’ll.

I’m doing a series about a new animated short film about pelvic pain.  It’s called Tightly Wound.  The film is based off of an essay written in this month’s BUST magazine (a magazine for young women – a magazine that I contacted about pelvic floor issues in women – a magazine that ignored my requests, but that’s neither here, nor there, right?).  Read the essay here.  <— click on this word

I learned about the film from the director, producer and writer:  Shelby Hadden.  The film is about her life with pelvic pain.  It’s an honest and vulnerable account of what it means to not be able to insert anything into your vagina.

Shelby has a Kickstarter campaign to raise funds to complete the film.  This started, oh, an hour ago….  The way it works is if you donate anything to the film, you only actually complete the donation if the entire campaign goal is reached.  Meaning, the film is raising $20,000, but if this amount is not raised by the end of November, then no one who has donated any funds actually ends up donating anything.  It’s all or nothing.  Check out the Kickstarter campaign here.  <— click on this word

If you do nothing though, at least be a voyeur and watch the film trailer here.  <— click on this word

Seriously.  I mean, you’re already reading this blog….

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]

I Heart Overactive Bladder

I recently went to a talk about overactive bladder.  It left me the opposite of speechless.  It left me speechfull.  (This, I write, on the tail end of a conversation in which I told someone that my boss likes “persistency”.  30 seconds later, I am informed that that is not a word, however, the point went across and now you can call me Saraspeare.)

Full of speech I am.  For in this talk of the bladder that is fulleth, I have resigned mine own self to the awareness that the measures I employ to empty thy bladder are most assuredly unbeknownst to much of the bleeders of this land.*

*(I have a lot to say because apparently many doctors don’t understand how physical therapy can treat overactive bladder.)

Overactive bladder can be part of someone’s pain experience, or it can stand alone.  Either way, it’s unbecoming and annoying.  It can threaten your sleep and your love life and your ability to watch The Bachelor.  That is why I love to treat this: it changes your quality of life.

From this talk, albeit only a snapshot – or even just a few physicians’ thoughts, really – it appears that we don’t actually define “overactive bladder”.  It’s just the need to pee a lot.  So, in this hazy description, we’ve created a world of options that I view as overtreatment.  You can get your bladder Botox’d.  You can get on a variety of antibiotics for infections you do or do not have.  You can get instillations or bladder distentions – all uncomfortable and invasive.  But, what this talk didn’t want to talk about was physical therapy.

I love to treat overactive bladder because not only does it return my patients’ quality of life, it also saves them money.  In a few treatments, a patient has the potential to get off of prescription medication.  I initially wrote “In a few treatments I can get patients off prescription medication”, but then I thought that might sound conceited.  However, it’s not actually conceited because when I say “I can do this”, I mean that “I, as a physical therapist, can do this” and so can other physical therapists.

There are many things I consider, and here are two:

  •  Calming the urge.  Tell it to “sit down!”.  The most superficial layer of fascia, the pannicular layer, can be a culprit for a lot of weird things, including inappropriate urinary urge.  The urinary urge is inappropriate when it’s signaling you to pee when your bladder isn’t full.  The appropriate time for your bladder to signal that you need to pee is when it is full.  Otherwise, it is just being a nuisance…so we need to shut it up.  We can do this by chilling out the superficial fascial layer of any areas of binding/tightness/restriction/tenderness/parts that don’t want to move, etc.  These bladder talky talky parts are typically going to be located between the ribs and the knees – like the abdomen, bony pelvis, inner thighs, among others.  After just one treatment I truly expect a change.  I don’t tell my patient that – I don’t want them lying to me because they think I’ll be disappointed otherwise.  In fact, I usually start most assessments with “No humoring me – are you better or worse or the same?  Don’t lie to me.”  I kid you not.  Ask any of my patients.
  • Retraining the bladder.  So, there are these things called “mechanoreceptors” in the lining of the bladder.  They are like scales measuring weight.  Imagine that if urine is filling the bladder, then at a certain point, there will be enough urine in the bladder to place pressure on the sides of the bladder, essentially pressing on these scales.  Once a certain amount of pressure is placed on these scales, then they alert the brain that it’s time to pee.  However, if you give in to each and every silly willy bladder urge, then these scales re-calibrate.  They receive less pressure and think it’s time to tell the brain that the body needs to pee.  That is annoying.  That is disturbing.  No one wants to deal with that.  That’s why we re-train the bladder.  We give small, achievable goals in trying to get the bladder scales to re-calibrate.  And they do.  They have to.  That’s how the body works.  And then you get off your medications, save some extra money and go on a cruise and buy three shot glasses and give one to your neighbors, one to your niece and keep one for yourself.  Done.

There are tons of options for overactive bladder, so you don’t have to resign yourself to taking a pill or putting a catheter up your own urethra.  Likely, your doctor isn’t going to offer you the option of physical therapy because they likely don’t know that we treat this.  Hell, even some physical therapists don’t know we treat this.  But we do.  Damn it.  We do.

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]  Please email me if you would like to be added to the Alcove Education email list.

To the Lady with Vaginal Adhesions…

Sometimes I’m wrong.  I’m cool with that.

But, sometimes I’m wrong on the Internet.  Guess what.  I’m also cool with that.  But, I do think I need to correct my wrong…on the Internet.

A while back, a blog reader commented with a question about vaginal adhesions.   She was diagnosed with adhesions and was told that this is why she has painful sex.  The reader wanted to know what I thought of adhesions.  This is how I responded:

“So, honestly, what is a vaginal adhesion? Did you ask your therapist or bodyworker that? I just think that might be a semantics thing. I never tell my patients they have a vaginal adhesion. I tell them they have scar tissue if they have scar tissue, I say they have trigger points if they have trigger points and I say they have a contracture (really shortened, tight muscle that needs to be manually lengthened) if I think they have a contracture. Those are my honest thoughts. I don’t think a vaginal adhesion is mythological like a unicorn, but I do think it’s just a semantics issue. Of the things above that I listed, I think that internal vaginal pelvic floor physical therapy with a therapist’s finger doing the work is probably the best option – knowing what little I know about your specific case.”

Well, guess what?  I was right and I was wrong.

I was correct in saying that vaginal adhesions are not mythological.  But, I probably wasn’t completely correct in saying that a diagnosis of vaginal adhesions is just a “semantics” issue.

What I have since learned is that vaginal adhesions are as real as the pimples on your shoulder and as real as that $300 utility bill.  They don’t always appear and a therapist can go years without seeing one, some, I dare say can go a career without ever seeing a vaginal adhesion, but they are out there.  Mark my words.  They are out there.

I have had three patients with vaginal adhesions now – all of whom I met after this anonymous blog commenter wrote to me.  All the while I thought of her…the anonymous poster.

You:  a woman reading my blog who was told you have vaginal adhesions

Me:  the blog writer who jokes about it all

If you are out there, give me a sign that you read this.  A comment.  An email.  A disparaging word.  Anything.  Just let me know you found me again.

Okay, so vaginal adhesions might be a semantics issue to some people who have never worked with adhesions, but for those of you who actually do have adhesions, you must know that they should be destroyed.

I learned this the scary/fun way.  I had a patient whose vaginal canal was full of adhesions.  It was frustrating because my finger was blocked every which way I decided to go.  It was like a cobweb of road blocks.  And, by the way, cobweb truly is the best way to describe adhesions.  It is a webbing of very thin vascularized tissue.  I could only insert my finger just past the bed of my fingernail.  What’s worse was, the woman wasn’t getting any better.  My futile efforts to force the finger into the furthest unknown were fruitless.  I don’t do well with fruitless treatments.  I don’t know if I was frustrated and treated with more force or if the hand of God just guided my own, but there came a treatment where when I removed my finger from the patient’s vaginal canal, there…was…blood.

No one ever told me there will be blood.

And there it was.  Blood.

What did my neurotic ass do?

Freak the fuck out.  That’s what I did.

There were apologies, questions, swearing that I’d let the doctor know right away, heart palpitations, IBS’ing all over the place, fear, tears and sweat.  You don’t make a patient bleed.  That’s an unspoken pelvic floor therapy rule.

I told the patient that there was blood on my glove.  I told her that that had never happened before.  I told her that perhaps she wasn’t getting enough estrogen into her vaginal canal (and truly, she wasn’t).  She was fine though.  She was cool as a cucumber, just chillin’ there watching me lose it.  This did make me feel better somehow.

So I call the doctor and the doctor is pleased with the bleed.  She says that the patient has tons of vaginal adhesions and I broke some and I needed to keep doing that until they were all gone.

You have no clue how relieved I was.  And then I just got excited.  Like, too excited.

This, for me, shifted things.  I learned that vaginal adhesions don’t hurt when you break them, they just bleed because they have vasculature.  They can reform again.  I learned that depending on where the vaginal adhesions are attaching, they can cause pelvic pain.  I also learned that 10% of women develop vaginal adhesions after mesh placement.  Others develop vaginal adhesions because of vulvovaginal atrophy over time or because of medical treatments.

I learned that adhesions are out there and you can stop them.

This is now one of my favorite topics to discuss with patients, doctors, students, my husband, neighbors, the mail man, my son, my friends, the food, my pillow, my mirror, my fingers.  I just love it.

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected] If you are a therapist and you’d like to subscribe to Alcove Education’s emails, just email me.

Cancer Treatment-Induced Pelvic Pain

I use the phrase “game changer” a little too often. I apologize to everyone that knows me that gets irritated with it. It’s like when I read the The Bachelorette tell-all’s and couldn’t understand why “shit show” was the only word they could use to describe their experience. I say “game changer” so much that surely now the game is back to its original form – it cannot possibly change any further.

The latest game changer is Dr. Deborah Coady’s article titled “Sexual Health in Women Affected by Cancer”.  This piece came out just this month.  I want to frame this article because I both love Dr. Coady and her work.  Now, she co-wrote it, but I can hear her voice in the writing.  Some of it reads with a bit more sass than I’m used to seeing in medical literature – but I like that.  Here are the highlights:

The new, correct term to describe a woman that has had cancer is no longer “cancer survivor”, but instead “woman affected by cancer”. Women live after cancer comes into the picture. Cancer affects women. Women can be given the tools to take hold of how cancer affects them. These tools can come in the form of societal support, medical support and spiritual support. This is a type of “people first” language that describes individuals living in their experience instead of defining individuals by their diagnosis alone. Because I love to teach, I need to be mindful of this. It’s literally easier for me to say “cancer survivor” or “cancer patient” than to use a few extra small words. But, that is my responsibility now. My facial muscles can handle the extra movement.   My mouth will not fall off from exhaustion. I’m sure of it.

The article states that women should be treated prophylactically. What does this mean? This means that if a woman is given a medication that is known to cause a symptom, then that symptom should be treated before it starts.

It’s like how when my local Austin urologists are going to perform a prostatectomy on a guy, they send the man into see me first to prepare him to have minimal urinary incontinence and erectile dysfunction symptoms.  Then the surgery is performed.  Then the guy comes back to me for more treatment.  Because we know the cancer treatment for prostate cancer can induce incontinence we therefore assume the patient will have incontinence so we treat the incontinence before it even starts.  We best prepare this patient for optimal outcomes.

It’s like how some women who get a real urinary tract infection are given both an antibiotic and a prescription to treat a yeast infection should it follow the original infection. Antibiotics are known to cause a change in vulvovaginal flora which can cause a yeast infection.

But…treating women affected by cancer is also not like these examples because sometimes a woman doesn’t get a yeast infection after her antibiotics and she doesn’t need to take the yeast infection treatment. In women affected by cancer, many, many, many treatments will with 100% certainty cause pelvic pain symptoms. And now here are some of the details:

Radiation and surgery treatment can cause neuropathy and/or neuromas. When radiation is directed at organs that are close to pelvic nerves (or any other nerve), guess what, those nerves can get radiated too. This can cause neuropathy to the pelvic nerves sending pain along the course of that nerve. Anywhere that nerve goes, pain can go. According to Coady’s article, this can even cause nerve compression. <— I did not know this.

Drugs such as Tamoxifen and aromatase inhibitors reduce the body’s estrogen production. This is estrogen suppression. This is truly, the great suppression.  When this happens…read my muscular lips: no new estrogen. And just like Reagan wanted to keep people affected by AIDS from entering the United States, Tamoxifen and aromatase inhibitors keep estrogen from flowing freely through your united states. (Did that analogy work? Eh. It stays.)

This means that parts of your body that are highly dependent on sex hormones such as the vulvovaginal tissue and most especially the opening of the vagina (which is the vestibule (which is also technically vulvar tissue (which is what I teach in my course (which Dr. Coady so kindly does a Q&A in)))) are not getting adequate supply and therefore will atrophy. This means that the clitoris will get small. The hood of the clitoris will start to attach to the clitoris. The labia minora (the little hairless lips) will shrink and start to get absorbed by the labia majora. The opening of the vagina will get smaller. The tissue that makes up the opening of the vagina – the vestibule – will become painful and irritated. The opening of the vagina might start to tear. The vagina itself will become dry and frail.  Just for kicks now, it might start to burn with urination or it might feel like a constant need to pee or a constant sense of having a urinary tract infection.

Now close your eyes (while you continue to read). Imagine a resort. Not just any resort, but a fruitful resort allowing wet, wild fun and life funded by sex hormones.   Lots of sex hormones. Sex hormones coming out the wazoo. Sex hormones constantly flocking to this resort because it is the hottest place since that New York City club advertising three-breasted women and hot dogs.

But then everything changes. Now the economy is in a really bad way and what little sex hormones are left are being used for survival, pure survival. Sex hormones can’t be wasted on fun. Sex hormones can’t be wasted on getting wet. We are rationing here. Desperate times call for desperate measures.   That once rich, lavish, scandalous resort is now bankrupt. It’s doors closed. And when someone drives by to check on it two years later…well…well…just imagine a wasteland. The resort is unidentifiable. The frame of the buildings are gone. Whatever framing is left is covered in cobwebs. The architecture is completely destroyed and the sun has melted all of the lawn chairs. Tumbleweeds roll by. This place is abandoned and honestly, scary.

That’s what the great suppression is capable of.

We leave the resort abandoned and alone.

But.

It’s. Gonna. Be. Okay.

This place has a happy ending.

According to Dr. Coady’s article “Sexual Health in Women Affected by Cancer”, the symptoms of Tamoxifen (and for now aromatase inhibitors) can be treated before they even begin. Once a patient is placed on these drugs, they can try to maintain their vulvovaginal health by using topical estrogen. I have never, ever heard this before. Have you? Surely not. Surely you had to re-read that again.

This here is the game changer. The game is changed. It’s not the same game anymore. Now it’s a different game. Game. Changer. (shit show) Game. Changer.

Remember that topical estrogen is applied to the vulva and vagina – depending on where you want it to go. The article states that there is little to no absorption of estrogen in the blood stream when small dosages of estrogen are applied at the vulva (the external genitalia including the clitoris and the labia majora and minora) and the vestibule (technically this is vulva but it can feel like it’s internal).

This is where things get good. This is how that abandoned resort gets all its sex hormones back. Slowly the grass starts growing again. The framing goes back up. The foundation is redone. The cobwebs are blown away. Somehow the lawn chairs sit up.  The doors open again and slowly but surely fun times are had by all. It takes time, but this resort is back.

The atrophic changes that take place at the vulvovaginal tissue are reversible in 90% of individuals. That is what this article says. This article isn’t really about medicine, it’s a story of how a once beautiful resort suffered in the great suppression, but then it got its groove back.  That’s really what this article is saying.  It’s saying that all vulvas can fight the great suppression.  All vulvas can make it to the other side.  Make vulvas great again!  Yes vulvas can!   Vulvas are stronger together!  Vulvas have a dream!  Ask not what your vulva can do for you, but what you can do for your vulva!  How is that for some magic rub?

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]  If you are a therapist and you’d like to subscribe to Alcove Education’s emails, please email me.

The Silver Lining in My Anxiety

It was a long car ride with a sleeping toddler that gave me a moment of reflection.  These moments are few and far between because my mind doesn’t stop.  It has never stopped.  My high school theater teacher told me that I wear all my emotions on my face and looking at me is like watching a roller coaster ride.  I was proud of it then, but I’m ambivalent to that now.

That car ride let me pause to think about my madness.  It is something that is on the forefront of my mind about once every week.  It sits there like a paper cut.  I can ignore it until I move my finger just the wrong way, then it sends a twinge of pain to my brain – reminding me that I’m not healed yet.

I’ve taken two paragraphs to introduce the concept of my post-partum anxiety.  My child is three.  He uses the word “actually” and encourages me to give him his way by asking me to “think about saying yes” to his requests.  This boy is doing simple math and I’m still dealing with post-partum anxiety.  I want more children, but I haven’t gotten pregnant yet.  And then I don’t want more children because my brain never recovered from having the first.  It’s this back and forth and it’s constant.

But that drive.  It was so quiet.

In that car I decided to own my situation.  I am medicated and I can go off my medication, but my anxiety will run rampant.  It just annoys my husband and it doesn’t let me enjoy the small pleasures of life.  Instead of sitting on the couch watching Bachelor in Paradise, I’m thinking of all the better ways I could be spending my time, or even worse, the thousands of dreadful things that could happen to my peacefully sleeping child…while he is sleeping.

I made the decision to own this.

I am someone living with post-partum anxiety.

In that car I thought of the opportunities my anxiety actually gave me.  In attempts to distract myself from all that I could not control, my anxiety let me focus on my work.  I received a new energy in figuring out this puzzle of pelvic pain.  I dove into the “why” of this and the “why” of that.  I reconsidered all the things that were “no’s” and the “impossible’s”.  I started asking new questions.  I grew some balls and started questioning doctors.  I started researching and reading more.  It was exhausting for my husband to witness.  I wanted to be in control of something and my knowledge and my skills were something I could definitely control.  Instead of becoming anorexic, I became aggressive.

In that car I realized that I truly am a born again therapist.  To understand what that means, you have to understand that being a provider for patients in pain can be draining.  We want our patients to get better, but we also understand that there is so little known about pelvic pain.  It’s frustrating for everyone involved.  We give so much of ourselves to our patients in listening and treating and thinking that we do burn out easily.  It’s not something providers want patients to know, but Lord it is the truth.  I was there.  Before my maternity leave, I honestly thought I couldn’t do this work any more.  I felt that way because I felt stuck in my treatments.  I wasn’t asking enough questions.  I wasn’t contacting enough people.  I wasn’t reading enough material.  When you don’t do that, you burn out more easily.  My anxiety pushed me to fuel my fire.  With the birth of my son came the birth of a new professional.  Cheesy?  Yes.  Do I care?  No.  (Well, maybe a little.)

In that car I understood that from my anxiety came Blog About Pelvic Pain.  And from Blog About Pelvic Pain came Alcove Education.  And from Alcove Education I am able to reach more people with pelvic pain.  And I get to teach!  I’ve always loved to teach.  My post-partum anxiety (note that I say “My”) opened a lot of doors.

I keep it under control and I laugh about it.  My anxiety is a secret to no one.  I really do own this – and lots of Sertraline.  When my family asks me about something that they know is a little trigger for me, I tell them “I’m on 150mg, it’s cool.”  This probably makes everyone around me a little uncomfortable.  But, I could care less.  That is one thing I refuse to get anxious about.

Pelvic pain isn’t like post-partum anxiety in a lot of ways.  But, it is something that no one wants.  It is something that many people don’t understand.  It is isolating.  And it is something that can go away.

I’m not saying that pelvic pain should be “owned” or “accepted” or “ignored”.  I’m not saying that there is no hope.  There is hope.  There is a lot of hope.  And I believe all pelvic pain can be resolved, with the right care.

But, what I want to know is this:

In a moment of reflection, what would you learn about your pain?

 

If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]

Meet Dr. David Prologo

Have you heard of him?  I had not until just a few weeks ago.  I heard a rumor that he is doing some great stuff with pudendal neuralgia.  He is an interventional radiologist located at Emory in Atlanta, Georgia.  He is doing cryoablation to the pudendal nerve with use of CT-guidance.

See, interventional radiologists are the guys that are doing pudendal blocks with CT-guidance in the first place.  They are also the vein guys.  They treat pelvic congestion.  So, how perfect that Dr. Prologo treats both.  Makes sense, right?  Especially if  pelvic congestion created your pudendal neuralgia.  (The varicose veins can distend so much that it puts pressure on your pudendal nerve – or other nerves.)  If you don’t know much about pelvic congestion, then check out my post on it.  Click here.

So I hear about Dr. Prologo, I google him and the first image that pops up is the face of a very cheerful man.  I think, “Oh. He is happy.  Good.  I will email this happy doctor.”  And I do.  And he writes back.  Right away.  He allows me to basically interrogate him.  Here is a bit of our conversation:

  1. Sara: Is your technique for treating pudendal neuralgia called cryoablation or is it different from cryoablation?

Prologo_DavidDr. Prologo: This technique is indeed cryoablation. The unique thing about what we are doing, though – is the implementation of image guidance. We are using our interventional radiology training and evolving image guidance techniques to access nerves that are deep in the body and otherwise inaccessible for injections or ablations, in this case the pudendal canal.

2. Sara: How is your technique different from pulsed radiofrequency ablation?

Dr. Prologo: Radiofrequency ablation is heat mediated tissue destruction. Cryoablation creates shifts in osmotic gradients and intracellular ice crystals that ultimately results in the shutting off of nerve signals, more like turning down the volume of the stereo vs. blowing it up with a bomb.

3.  Sara: Why do you prefer freezing versus burning?

Dr. Prologo: 1) Cryoablation is great for pain procedures because it is not painful 2) Cryoablation creates an “ice ball” that we can see on CT. Therefore there is no guesswork involved with where we ablated 3) Cryoablation initiates a unique immune response that a) results in longer lasting results and b) stops neuroma formation (vs. radiofrequency ablation or surgery)

4.  Sara: What are the results you are getting?

Dr. Prologo: Our results have been largely durable and positive. That is, the great majority of our patients experience complete relief from their symptoms. That said, pain can be complicated and outcome depends heavily on patient selection.

5.  Sara: Have you followed your patients from four years ago?

Dr. Prologo: I am in touch with most of the patients that were done and they are still doing well.

6.  Sara: What are the side effects?

Dr. Prologo: We have not seen any side effects to date.

7.  Sara: Any long term issues?

Dr. Prologo: Not that we are aware of at this point.

8.  Sara: Is it possible that you are inadvertently treating the posterior femoral cutaneous nerve as well?

Dr. Prologo: No. The ablation zone and CT scanning are both exquisitely precise. This is actually the epicenter of the new therapies and innovation. That is, it isn’t really the cryo that is new, it’s the advanced imaging guidance to treat pain. The techniques are so precise that we can literally treat 2mm nerves in the skull base.

9.  Sara: Who is an appropriate referral?

Dr. Prologo: This is key. Patients who have been diagnosed with pudendal neuralgia are most likely to benefit. That said, many patients come with a wide variety of backgrounds and symptom descriptions. As a result, we can get everyone to the same starting point by performing a diagnostic “test injection.” Again, because we have CT, we can see with 100% certainty where our injection ends up. As a result, there is not guess work. If the patients symptoms improve with the test injection, then they will do well with the cryo. If not, then they don’t have pudendal neuralgia and some other therapy is warranted. That said, interventional radiologists also treat pelvic congestion syndrome, which can be misdiagnosed as pudendal neuralgia.

10.  Sara: Explain the process.  Do patients fly in for an evaluation and receive treatment or do they have to fly back for treatment?

Dr. Prologo: No. We have developed a system in which patients who have stories reflecting underlying pudendal neuralgia – or some close variant – come in for a consultation and injection on the same day. Usually, we also schedule the cryo for the following day so everything can be done in one trip. If the patient fails the injection, we just cancel the cryo.

11.  Sara: What does treatment consist of?

Dr. Prologo: We place a needle in CT in the pudendal canal. The needle is configured to create a 3cm x 2cm ablation zone about its center. We freeze for 8 minutes, thaw for 4 minutes, freeze for 8 minutes, and thaw for a final 4 minutes – after which we pull the needle/probe.

12.  Sara:  How long do patients stay in town after the treatment for pudendal neuralgia?

Dr. Prologo: I encourage patients to at least stay the night of the procedure. That way, if there happens to be a complication (bleed, for example) we can take care of them here.

13.  Sara:  Do you freeze the whole nerve or different branches of the nerve?

Dr. Prologo:  We freeze the portion that runs in Alcocks’s canal (the pudendal canal).

14.  Sara:  Are you doing a pelvic exam to confirm your diagnosis of pudendal neuralgia or are you going by verbal report of symptoms alone?

Dr. Prologo:  No. It is all about the injection. We have the luxury of being able to make the diagnosis based on the injection because of precision imaging. We shut down the nerve with 100% certainty in order to make or exclude the diagnosis of pudendal neuralgia.

15.  Sara:  Are you familiar with Interstitial Cystitis?

Dr. Prologo:  Yes.

16.  Sara: Are you seeing your patients’ Interstitial Cystitis symptoms resolve?

Dr. Prologo:  We usually don’t treat this condition with this procedure. I think it may be helpful for folks to understand the larger picture. We have been lucky enough to be able to treat many conditions by accessing nerves with image guidance (phantom limb pain, occipital neuralgia, cancer pain, and more). Pudendal neuralgia is one of these subsets.

17.  Sara:  Does insurance cover treatment?

Dr. Prologo:  So far >90% of cases have been covered without incident. Sometimes we need to call or write a letter if the patient is out of network.

18.  Sara:  Will you be presenting your treatment at any pelvic pain conferences?

Dr. Prologo:  I have thought about this, but have not pursued it. I presented a few years back at our conference (Society of Interventional Radiology) but I think more interested parties may be at the pelvic pain conferences.  

I would like to add that 1) I didn’t invent this. I was trying to help patients with cancer pain using cryoablation and God put these patients with nerve pain in my path (pudendal, greater occipital, phantom limb, etc) so I feel like it is my responsibility to do the best I can to help them. I have been so fortunate and blessed to have met so many beautiful people because of the way this thing has worked out. In the end, my only motivation for continuing to do this is to help folks.  2) as I mentioned earlier, the therapy is one application in a much larger picture – the use of image guidance for the treatment of pain. As data emerges regarding the safety and efficacy of these procedures, we will continue to grow and hopefully help even more patients. We appreciate the privilege to participate in each and everyone of these patients’ lives, hopefully toward the better. 

Thank you Dr. Prologo for metaphorically sitting down with me, letting me shine a super bright light in your eyes and continuing to answer my questions despite my Cheetoh breath and complete lack of etiquette.  You are patient.  I am a salivating, rabid dog hungry for some answers.

If you have any questions or comments please leave them anonymously in the comment section below or email me at [email protected]