“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]

What to Do After a Hernia Repair Makes You Nervous

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I’m going to go out on a limb and say that probably one quarter to one third of my male patients have pelvic pain because of a hernia repair gone imperfect.  (Don’t confuse that to my guess that 80-90% of my male patients have pelvic pain because of something related to a hernia.) When this happens, there are options out there.  I have to honestly say that those patients who have pelvic pain because of a hernia repair only go so far with physical therapy treatment alone.  They may improve a lot, a little or not at all until they get the right kind of medical management.  I’m considering medical management to be care that I cannot provide as a physical therapist – something a physician might do.

According to the article that I reference often called :  Current trends in the diagnosis of and management of post-herniorraphy chronic groin pain which can be found in the World Journal of Gastrointestinal Surgery (try googling it – the full length article is available)…there are a number of treatment options for those with pelvic pain after hernia repair.

There are surgical and non-surgical options.  Let’s start with the non-surgical:

  1.  Lifestyle modifications:  This means that you just change things.  Sit less.  Avoid pain.  Use heat or ice to calm the pain down.  In general, I think this is a dumb idea (and so do the authors of the article, but they say this much more professionally).  So, forget this option.

2.  Use analgesics:  Numb the pain with creams and gels.  This is a Band-Aid and it isn’t a Band-Aid.  It’s a Band-Aid because you are masking the pain to an extent, but you are not resolving the core issue of scarring, fibrosis, a lumpy mesh or nerve irritation.  However, what you are doing is chilling out the constant painful signal to your brain.  This might allow your fascia and muscles to calm down for a bit and for your brain to get a break.  Constant pain signals to the brain actually change the brain and essentially make you more sensitive to less pain.  It’s exhausting for your nervous system and it’s a downward spiral for your quality of life.  So, in this respect, it isn’t a Band-Aid.  Get it?

3.  Physical therapy:  Ya’ll, this article lumps physical therapy in with massage and acupuncture.  Nothing against those that practice massage and acupuncture, but when you lump us all together, it tells me that the authors of this article have no clue what pelvic floor physical therapists do.  It says that physical therapy can reduce the pain, but cannot prevent pain recurrence.  I agree and disagree.  It just depends on the reason one has pain after their hernia repair in the first place.  We cannot treat all the symptoms with the same interventions.  Cookie-cutter, cookie-cutter, cookie-cutter!

4.  Nerve blocks:  The article says that this can reduce the pain signal to the brain and there needs to be more research on nerve blocks for post-hernia repair pain.  After what I’ve seen in my own practice, I think that it really depends on why one has post-hernia repair pain in the first place, who is doing your nerve block, which nerve the physician decides to block, how they block it and what combinations of nerve blocks (if they are doing more than one) they decide to do and what they are injecting into the nerve.  Nothing is simple, everything is complex, but if the nerve is a big issue and there isn’t a neuroma growth and the nerve is purely just irritated and a patient gets the right kind of physical therapy from a therapist that doesn’t provide cookie-cutter treatment, then I believe that nerve blocks are a viable option to resolve some patients’ pain.  It’s about why the patient has their post-hernia pain.

Surgical options:

  1.  Mesh removal: This article says that just removing the mesh alone won’t resolve the pain because an inflammatory process has taken place and nerves have become irritated.  Because of this, many physicians will remove the mesh and then remove parts of the irritated nerve as well.  Partial removal of the nerve is called a neurectomy.  This can result in numbness.

2.  Ablation:  So they discuss radio-frequency ablation which is the use of heat to burn the nerve.  This article looked at doing ablations for inguinal nerves at the spinal level and found that 4 out of 5 patients found that this completely resolved their pain months later.  Now, don’t go thinking this is the golden ticket.  Remember that patient selection is really important here, so after careful assessment of a patient the ablation was performed.  When you do the right treatment for the right cause of symptoms, that’s when you get good results.  In my next post, I will discuss cryoablation which is the use of cold to treat a nerve.  Heat vs. cold.  Cool, huh?  <— Wait, I swear I didn’t write that intentionally, but will you look at that…”Cool” – I just kill myself!  Ah…me.

So, that’s that.  These are the options listed in ONE article about post-hernia repair pelvic pain.  Again, I want to stress that for anything in medicine, you will only get better if you get treated for the root cause of your pain.  Too many providers out there are throwing only apples at pelvic pain.  Instead, they need to look at the pelvic pain and determine if that patient needs to be treated with an apple, banana, orange, kiwi or a cantaloupe.  We cannot only have apples in our pockets because apples don’t really fit in a pocket to begin with.

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

When a Hernia Repair Makes You Nervous

In the last post I discussed the importance of getting hernias checked.  This is really serious as the effect of the hernia on nerves can cause a lot of what might seem to be unrelated pain.  Meaning, you can have pelvic pain as a result of hernias at your abdominal or inguinal areas.  Like I said before, I only truly opened my eyes to this a few years ago thanks to my detective patients.

Before jumping into surgery to repair a hernia, it’s important to understand what can happen as a result of hernia repair.  Let me preface this with one statement.  I have not had any patients start with pelvic pain and then get a hernia repair to end up with more pelvic pain.  I say this because of the next statement.

Hernia repairs can cause pelvic pain.

Let me repeat much of what I just said, but in a different way.

Hernias can cause pelvic pain. I’ve had patients get a hernia repair in order to reduce/eliminate their pelvic pain.  I have never had a patient get a hernia repair in order to reduce/eliminate their pelvic pain and end up in more pelvic pain.

Hernia repairs can cause pelvic pain.  Depending on where the hernia is located, it is very possible to develop pelvic pain as a result of the repair.  

Here is why:

  1.  During the incisions, it is possible to nick, damage or irritate a nerve that extends down to the pelvis.  This can happen with any incision at any part of the body.  It also happens with Cesarean scars when women deliver.  A small (or large) nerve gets a little more action than it was meant to have and that nerve gets pissed.  It can develop a reactionary neuroma which is like a little flower bud along the nerve now that is constantly and unnecessarily sending signals to all the remaining highways of that nerve – potentially the clitoris, penis, scrotum, testicles, close to the sit bones and anus.  It just depends on which nerve gets mad.  It could be the ilioinguinal, iliohypogastric or genitofemoral nerve.
  2. When mesh is placed, scar tissue can develop over the mesh and the surrounding nerves that can extend down to the pelvis.  Scarring of the nerves reduces their oxygen intake, blood flow and their mobility.  Without enough oxygen and blood the nerve has essentially become ischemic.  This means the blood supply (and oxygen carried in the blood) is cut off from the nerve.  This is really bad for the health of the nerve.  Nerves are a small percentage of the human body, but they require an oxygen supply that is proportionately quite hefty.  Without this and without proper mobility, you are going to feel pain in the pelvis.
  3. When mesh is placed, it can roll up a bit and irritate nerves that extend down to the pelvis.  This causes all the same symptoms as reasons 1 and 2 because of the same reasons as reasons 1 and 2.

Essentially, you could have a variety of different pelvic pain symptoms resulting from a hernia repair.  Person A and Person B could have drastically different symptoms depending on which nerve is mad and what part of that nerve is mad, but it’s possible that their symptoms are all a result of an imperfect hernia repair.

There are options for those dealing with pelvic pain from hernia repair and those will be discussed in the next post.

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

When a Hernia Makes You Nervous

Please appreciate my attempted pun.

Hernias can make your nerves hurt.  It’s true.  Read about it here.  <— click there

I only started opening my eyes to this about two years ago.  It was two patients that really turned my focus onto hernias.  I have lots of patients with diagnosed small hernias.  I’m very suspicious of the role of hernias in pelvic pain.  It can mimic pelvic pain that one might think comes from the pudendal nerve.  The issue I face as a therapist is getting these hernias repaired.  Many physicians acknowledge a small hernia, but feel that if a hernia doesn’t create bulging then it doesn’t need to be repaired.  But if you read Dr. Shirin Towfigh’s post that I linked to above, you’ll understand that this isn’t always the case.  (On a side note – if you aren’t going to clink on that link, please know that she highly recommends checking for hernias while standing.)

If I hit a plateau with a patient and the doctor’s have tried everything they’ve thought of or everything I’ve suggested and we know that a patient has a small hernia, at that point I’m pushing for that hernia repair.  Very few local physicians agree with me.  It’s a sad, sad thing.  It makes me a highly unlikeable advocate for my patients.  I’m unlikeable to the physician, not the patient.

Outside of the immense pressure that a small hernia creates through the abdomen and then pelvic cavity, it is my hypothesis that ignored hernias can create nerve pain.  Specifically, I’m thinking that the ilioinguinal, iliohypogastric and genitofemoral nerves can be affected with hernias – whether they be big or small.

Hear me out.  I’m guessing the following.

There are some common sites for hernias.  One is at the belly button.  This is called an umbilical hernia.  These types of hernias occur often in babies, perhaps because of the placental attachment.  I’m assuming that often this hernia closes on its own, but when it doesn’t and the belly button appears normal then perhaps these babies become adults with small umbilical hernias.

Another common hernia site is the inguinal area.  This is that crease where your abdomen meets your leg.  It folds in when you sit and straightens out when you stand.  There is something called a pubic tubercle that rests in this inguinal space.  This space carries blood vessels and nerves.  Many men get inguinal hernias after lifting heavy objects, though women can get inguinal hernias too.

Some hernias bulge out and can be pushed back in.  Some don’t bulge at all.  Some hernias hurt, others are completely pain-free.  Sometimes a person has one badass hernia that looks like an animal is trying to free itself from the human’s abdominal cavity.  Other times a person has several teeny tiny hernias that they are unaware of.

So – let’s talk about this.

If a person has a hernia, then any and all the nerves around that hernia site could be aggravated by the hernia alone or by movement such as bending, lifting, stretching, pressure from pooping, eating a lot of food and stretching out the abdomen, etc.  Think of something that moves the abdominal tissue around that hernia and that could irritate nerves in that area.

This is why if I plateau out with a patient, I really push searching for a hernia.  Sometimes I can say, I think your hernia is at the left inguinal area or at the belly button.  I’ll tell the patient to tell their doctor that I’m super suspicious of this undiagnosed hernia.  However, like I said before, there is so much push back from my local physicians.  I don’t know if this is a regional problem or a blanket problem across the board.

Something is causing your pain.  I believe all people can heal.  So if you have reached a plateau, getting checked for a hernia isn’t a bad idea.  You just have to know what to expect in a good screen.  You also need to know the downsides of hernia repair which will be in my next post.

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

Predicting the Future – My Free Crystal Ball Session (Rocks not included)

This is what I cannot understand:  Providers can be really short-sited.  But, why?

Think of the wrist surgeon who says you have carpal tunnel, but they ignore your complaints of elbow, shoulder and neck pain.  Your wrist pain is coming from the neck!  So you need your posture corrected, your spine and shoulder mobilized, your shoulder blades re-educated and your nerves flossed.  The wrist is attached to the rest of the body, we cannot be wrist-centric in this case.

Think of the colorectal surgeon who will surgically remove your hemorrhoids, but won’t look in your vagina to see if you have a prolapse ultimately causing you to strain when you poop.  You need a prolapse assessment, treatment for the prolapse and the factors causing the prolapse so that you stop straining and don’t create further hemorrhoids.  The anus is centimeters from the vagina, we cannot be anal-focused in this case.

So then there is the person with pelvic pain.  Many people with pelvic pain end up complaining of foot pain.  They’ll go to a podiatrist and are told that they have plantar fasciitis.  This just kills me!  Patients start to think that they are falling apart, one part of their body at a time.  But, they’re not falling apart.  It all makes sense.  Hear me out:

I’m going to predict the course of events of someone in pelvic pain.  If I take a simple case, it would look like this:

  1.  You go through a period of high stress for work.  You sit a lot for this job.  You think about this job when you are at home.  You continue this high stress situation for weeks, months, years.
  2. You start to notice a dull ache in your rectum.  You’re like “I feel that, that’s weird, huh.”  You shake it off.  No big deal.  You decide not to do anything about it because it’s too weird a thing to bring up to anyone.
  3. The dull ache in your rectum becomes an actual pain in your ass.  You start to freak out because it’s starting to flare up sometimes when you sit for a while.

This person thinks that this pain is one thing.  But, then this happens:

4.  You start to notice that you have trouble getting all the pee out and when you are done, sometimes you dribble a little bit.  You kind of feel like an annoying nagging sensation to pee, even though you just went.  You realize that you need to pee a little more at night than you used to.

So now you think that you have rectal pain and now a bladder problem.  You must be just getting old, right?  But, there’s more:

5.  For some reason you start to feel a little sore after you orgasm.  You get a lingering discomfort in your genitals.

Eh, not a huge deal, just a little weird.  Until…

6.  Now you really dread pooping because you notice that you really hurt after pooping.  You notice that pooping makes your bladder hurt and your rectum flare up.  You don’t understand why this is happening since you’ve always pooped without issue before.

You’re starting to get freaked out at this point.  You decide to go to the doctor and they give you antibiotics for an infection that they cannot find.  You feel better for a while, but then…

7.  Your rectum hurts again, your bladder is still messed up, sex doesn’t feel the same and you still hurt more after pooping.  And now your feet hurt.  What the fuck?  Your feet?

This is when panic sets in.  You.  Are.  Falling.  Apart.  You go to the podiatrist and they tell you you have plantar fasciitis.  Can you catch a break already?  You do some foot stretches and massage your feet, the pain gets a little better, but it’s still there and it’s still bugging you.

8.  Now you can’t stand and you can’t sit.  You prefer to lie down.  What has become of you?  How will you work?  How will you play?  How did this happen all of a sudden?  You used to run marathons and you have two kids and you need to keep your job.  Now you’re anxious, really, really anxious, but the doctor tells you that nothing is wrong since you’ve been on several antibiotics already.  They’re now telling you to relax and seeing a psychiatrist.  So you go to the psychiatrist and they say you need to relax and get on anxiety meds.  So you get on anxiety meds and they help a little, but you are still in Hell!!!

That’s my guess.  That’s my prediction about the beginnings and the ends of my imaginary person’s pelvic pain.  Does it sound familiar at all?

What I’d like to see is a little more thought go into this situation.  You are paying your providers for their unique thoughts which are supposed to be better versed in the body than yours – that is why they are medical providers and you are not, right?  I’d like this thought to go in the direction of the whole body and not just the body part.

What I’m saying is, I want the podiatrist to know a lot about the back.  I want them to know when to send a patient with foot pain to a spinal specialist.  The sensations from the foot stem from the low back.  If the podiatrist could be less foot-centric and more whole-body centric, I think that the world would be a less pained place.  Really, I mean it.

Now, there are, of course, times when foot pain is stemming from the foot.  But, sometimes it’s stemming from the ankle, knee, hip, pelvis, back or all of the above.  Expert judgment should determine this.  Expert judgment is really necessary and should be expected, but most of the time I don’t see this happening.

So…what I’m saying to you is this:  If your feet start to hurt, please consider that your foot and pelvic pain could be coming from your back.  Don’t let anyone tell you otherwise.  Get treated for the core of why you are hurting, not just the symptoms alone.

And then there is the homunculus.  This is your brain’s map of your body.  Except, your body is Picasso’d in this map.  The parts of your body with more sensation are drawn larger and the parts of your body that are more “connected” are drawn together.  It looks like this:

homunculus

As you can see with a magnifying glass, on the left side of the picture, in the middle part of the brain (because that is one half of a brain), the feet and toes and genitals are next to each other.  Hence the theory why people with pelvic pain also develop foot pain.

What’s the answer?  I think the answer is that you should get your back screened very well before doing anything to your feet.  I think that’s the only thing you can take action on.  This homunculus thing is cool – but what do I do with that information?  How can I help you with that other than just getting you to understand the potential link?  It does make a cool picture and there is truth to it, so maybe you can frame it.  I would.

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

All Your Psychosocial Issues

Ya’ll.

All ya’ll.

Listen up.

I just had a manic OCD episode and washed my hands way too many times so this soap box is empty!  What should I do with it?  Any suggestions?

I don’t quite feel like recycling it yet so I think I might…just…stand on it.

Is that cool?

You’ve got psychosocial issues.

Have you heard that before?  Of course you have because you have pelvic pain.  The first few medical thoughts you pay for are that you need counseling or maybe even sex therapy.  You might have been told that you need counseling before you were told that you needed pelvic floor physical therapy.

The truth is that there is truth in this.  You do have psychosocial issues if you have pelvic pain.  How could you not?  But, the other truth is that we all have psychosocial issues.  How could we all not?  I’m compelled to stand on this now empty box that was once filled with unscented, white Dove soap because I’m hearing this phrase far too much in my professional life.

Allow me to explain.

What is real, what is necessary, what is evolving is this construct of explaining pain to patients.  There is really good research to back up the idea that if you explain what happens to the nervous system once someone has been in pain, anxiety, fear, etc long enough, then real physiological changes happen to the body.   These changes can create an exaggerated interpretation of stimulus.  That means a light stroke on the back of the hand can be truly interpreted by the brain as a razor splitting the skin on the back of the hand.  The observer’s reality of that act is different from the reciever’s reality of that act.  The brain connected to that hand, in the case of a person with chronic pain, truly believes that someone tried to shave their hand open.  And that’s scary.  Like, really, really scary in so many ways.  Can we count them?

  1.  Why the fuck would someone shave your hand open?
  2.  Truth is that there was no razor, but it’s hard to constantly remind your brain of that.  One part of your brain says “calm down” while the other part says “calm down, whaaaat?!?”
  3. If there is this much difference between the brain’s truth and the rest of the world’s truth, then is this person in chronic pain crazy?  Is all of this pain truly in their head?

It gets so sticky.  It gets hairy.  It gets confusing and lonely to be in this much pain for so long.  The only good part of this all is that there is true science to demonstrate that this is happening to the brain and the body.  The nervous system is re-wired.  The collective “we” of healthcare providers doesn’t know a whole lot about how to change this, but “we” are really interested in changing this and “we” are implementing new practices to do our best to change the chronic pain nervous system.

The names that pop up are Lorimer Moseley and David Butler.  They do tons of work on chronic pain – also known as central sensitization.  One example of this that many people are familiar with is the concept of phantom limb pain.  This is when someone has had a body part amputated, but their brain still interprets sensations of pain in that body part that is no longer there.  These amputees are not crazy people, they are sane, frustrated people living with significant alterations to their nervous system.  The same thing happens with pelvic pain.  You can get to a place where there is no intrusive injustice taking place in or on your body, but your brain perceives that there is still a body threat and therefore your body feels pain.  Remember – pain has a purpose.  Pain is to protect you from harm.  It’s just that with central sensitization aka chronic pain aka an altered nervous system, the nervous system gets stuck in a loop.  It just plays the same “pain” message”.

Ideally, patients are given tools via reading material, actual body movement homework programs and body calming techniques to retrain the nervous system.  Counseling can also be very helpful in reprogramming the negative through process that can take place when you are in chronic pain.  So, how much am I using all this in my practice?  Not enough.

I don’t use this enough.  I don’t educate on chronic pain nervous system changes enough.  I don’t harp enough because I have so much difficulty with my patient “buy in”.  I struggle to be consistent with my body movement retraining programs because if a patient gets stuck, I get stuck.  I don’t know how to proceed or alter my advice well enough to help the patient.  I need more education to help me be a better educator.

So…can we say that is kind of the “psych” part of “psychosocial”?

What about the “social” part.  What does that mean?

I think it means that, regardless of whether someone with pelvic pain is aware of it, being in pain changes their social roles.  It might mean that they do less housework, it might mean they switch some of their responsibilities at work, it might mean they are having less sex with their partner, it might mean they need to ask for some help from a friend.  Things are just a little or a lot different.  This difference can impact a person’s identity, their relationships, etc.  It can be a drastic thing where a person has taken on “pelvic pain” as their new identity, or it can be smaller like “Oh, I just don’t go to the movies anymore.”

I think that’s the “social” part of “psychosocial”.  I could be wrong and if I am…it doesn’t really matter because my angst isn’t about the definition of the word, but the use of the word.

The medical community uses the term “psychosocial” as a scape goat when they do not know what to do with a patient.  The pain doctor says “Oh, they say they had more pain after my nerve block, they have a lot of psychosocial issues to take care of.”  The physical therapist says “The patient complains when I have them do clamshells.  They say it makes their anus hurt.  That doesn’t make any sense.  I don’t think they want to get better.”  The psychologist says “I think that the pain is serving a role in their lives.  They are not ready to get better.”

My truth is that sometimes it’s true.  Sometimes, and it’s rare, sometimes I do think a person has psychosocial issues and the pain might be serving a role.  But…most of the time, MOST of the time, it’s just bullshit to blame a patient’s lack of progress on psychosocial issues.  In most of those cases, it’s the provider that doesn’t know how to best treat that patient.  Why do I say this?  I say this because I’m usually the second, third or fourth physical therapist that a patient has seen and I often hear from their former providers that the patient has “psychosocial” issues.  I even once asked an orthopedic surgeon to do a diagnostic procedure and he responded “Well…has the patient seen a psychiatrist?”  Kudos to you, sir, for thinking about the patient’s emotional well-being, but I take that Kudos bar back because you have forgotten to do your actual job.

The psychosocial scape goat.  We blame the patient – behind their backs.  Should we be blaming ourselves?  Eh.  No.  I don’t think it has to be binary.  I think that it’s okay to tell a patient that we’ve taken them as far as we know how to take them at this time.  I can’t tell you how many patients I want to find and pull back into my treatment room because on this day I know how to best treat them, but three months ago, one year ago, five years ago…I did not.  I truly believe that all of my patients can get better with the right care.  Sometimes I’m not the one that can give that right care.  In that case, I believe that I need to refer to another provider.  I think that’s the right thing to do and the honest thing to do.  I hate to hear discharge stories of patients who were essentially “laid off” by their therapists.  They didn’t do anything “wrong”, they just didn’t get better fast enough or at all.

There is the argument that as providers we can’t fix everyone.  It’s true.  I cannot heal all my patients.  But, I do firmly believe that if I cannot help someone, then someone else can.  I want to have options A, B and C available to them.

psychosocial issues

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

Extra! Extra! New courses for your pelvic floor physical therapist! Spread the news! Spread the love! (Don’t spread disease.)

Learn from the author of Blog About Pelvic Pain.

Vestibulodynia:  A Pelvic Floor and Orthopedic Approach.

Course Dates: 

Austin, Texas August 19-20, 2016

San Diego, California September 17-18, 2016

Course is approved for 16 contact hours through the TPTA and CPTA.

Click here for registration form.

Click here for course schedule.

More information at www.alcoveeducation.com

Book Review! Pelvic Pain Explained

Pelvic Pain ExplainedThis book has no rainbows.

But I still love it!

Pelvic Pain Explained, ironically, does what it’s title tells us it’s going to do.  It explains pelvic pain.  For some reason, I was expecting something different.  I’ve taken Stephanie and Liz’s class before and I remember really enjoying it, but I can’t remember commenting on how good they are at actually breaking down the “why’s” of pelvic pain.  Am I only now paying attention?

Ya’ll, this is better than Headache in the Pelvis.  It explains things more simply and more efficiently.  My favorite example of how pelvic pain can develop is this one:  A guy works as a cashier.  His conveyor belt is on the left side of his body, he constantly stands with planted feet facing forward and rotates to the left.  Day in and day out, left rotations.  So now he has a left lumbar rotation (Ok, they didn’t say that, but I’m saying it) and the muscles on the left side of his back/pelvis, etc. become tighter and the muscles on the right become looser.  Then the patient goes skiing and does a bunch of jumping and falling and uses a lot of his back, hip and pelvic floor muscles doing so.  The left side muscles were already chronically tight and now they were asked to do a bit more work and BAM! now this guy has pain.  He thinks “Why do I have pain after skiing?”  Well – because I just explained the build up, you all now know.  I love this example because it’s super common.  Think about the woman who is driving with her toddler in the backseat.  She constantly reaches to the right behind her to give her daughter something or take something away (because she is driving in America and her driver’s seat is on the left).  Think about the guy that works as a dishwasher.  The dishwasher is on one side of his body and he makes constant, repetitive motions in the same direction.

I like how user-friendly the book is.  It helps patients navigate the medical community and offers questions to ask providers.  I think going to a provider with a list of questions is important.  It’s even more helpful when the list comes from pelvic floor physical therapists that know how to treat pelvic pain.

The first thing I noticed when flipping through Pelvic Pain Explained was that they mention that patient’s can get a lot of good information from blogs.  Blogs like…mine!  I got the book as a birthday present from my sister.  The best birthday present was seeing Blog About Pelvic Pain referenced in the appendix.  That’s me! In print!  (Every birthday and Christmas she asks me what I want and every birthday and Christmas I ask for a book about pelvic pain.  She hates it.  She’s bought me The Better Bladder Book, Screaming to Be Heard, Mind Over Medicine and Pelvic Pain Explained.  I recommend all of them.  Embarrassing shout out to my sister Aryana Khanzadeh.  She will truly hate that I have said this much about her and that is why I just keep going….Hopefully now anytime someone googles her they will find my blog muwahahaha!)

Then there are the kegels.  They talk about kegels.  Not everyone should do kegels and just because you shouldn’t do kegels now doesn’t mean you can’t do kegels later.  Just because you once did kegels, doesn’t mean you should still be doing them.  I was actually a kegeler for some time before I really let this concept settle in.  I came from an orthopedic background so it made sense to me that if you did kegels it could only improve your pelvic floor dysfunction.  I was starting to hear buzzings that doing kegels wasn’t for everyone so I just shoo’d those mosquitoes out of my ear.  I continued to make my patients kegel left and right until I started to really pick up that my patients were coming back feeling worse.  They would have more pain or they would have more of an urge to pee than before.  I had to come to terms with the fact that I might be wrong.  It was turning out that somewhere around 50% of my patients who had short pelvic floor muscles who were instructed in doing kegels (by me) were feeling worse because of it.  That was my fault.  Kudos to the therapist’s out there that started practicing in pelvic floor after this kegel situation was being addressed – I had to learn the hard way.  It’s kind of embarrassing to make your patients worse because you are stubborn.

My only regret about this book is that they didn’t go into a whole chapter of detail about how powerful a role connective tissue plays in pelvic pain.  I wanted the explanation of the reasons for connective tissue manipulation to be more expansive.  I do want everyone to skin roll appropriately.  I want everyone to understand the purpose and the benefits of skin rolling.  I also want to eat Toblerone for every meal without gaining weight.

 

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

Trusting Estrogen Part 4

I said the blog would be back.  So now the blog has returned.

Why the abrupt, unexplained halt?  Well…I was trying to get knocked up and it wasn’t happening.  There was a lot on my plate.  Something had to give and this gave.  I think I’ve got my ducks in a row now and on we go.

Do you remember months and months ago how we were talking about estrogen?  No?  Well…go back and read the past few posts and you’ll be caught up.

So…

But what about the fear?  Let’s talk about the fear.

Does estrogen cause cancer?

I’m going to keep what I know simple.

Estrogen applied to vulvovaginal tissue is not supposed to be absorbed throughout the body.  The simple truth that I do know is that it can be absorbed systemically – just a bit.  But, it’s not the same as using systemic estrogen via a patch or a pill or a gel.  Estrogen that is only absorbed at the vulvovaginal tissue should not cause cancer because it should not have large body wide effects.

Some women are super sensitive and their nervous systems absorb, absorb, absorb.  I have patients who use vaginal estrogen and they’ll notice mood changes and breast changes.  This is because of the systemic absorption that they are receiving because their systems are bit more spongy – they take in everything quite intensely.  I’ve asked these patients to try to just place a dot of estrogen on their urethral openings or just at the vestibule.  This way they are getting benefit without putting the hormones in the pelvis pocket – otherwise known as the vagina.

Estrogen in itself, regardless of where it is applied, does have the ability to increase cell growth.  This is what cancer is – it’s crazy, uncontrolled cell growth.  Estrogen in itself, regardless of where it is applied, increases the body’s metabolism.  For example, when a man takes estrogen therapy to perhaps transition to become a woman or at least to make their physical appearance align more with what a classical woman looks like, their fat redeposits on their face making their cheek bones more noticeable and their waist thins because of the increased metabolism in these areas.  Because of this increased metabolism, many physicians say that estrogen bodywide is considered breast protectant.  It’s increased metabolism counteracts it’s own increased cell growth.

The other important piece of information to add is that the study that emphasized the connection between estrogen and cancer was a study that used Premarin and only Premarin.  That is worth consideration.

This is one reason I am glad I’m not a doctor.  I don’t have to make these decisions for patients.  What I do do, though, is ask my patients to have these conversations with their doctors or I have these conversations with their doctors.  It is the doctor’s decision to determine whether or not estrogen body wide vs. locally is appropriate for a patient.  Each individual must consider their own  unique medical history.

Can you see it now?  The hurricane is coming.  I’m the hitchhiker from way back.  You are in a car with gas and you have pelvic pain.   You’ve got pain…but you’ve got gas.  Will you pick me up?  I’m a pelvic floor physical therapist and I can help your pelvic pain – but you don’t even know it because you are programmed to be scared of all hitchhikers.  You are programmed to be scared of estrogen.  But, what if this is what you need to make a huge difference in your pain?  In your life?  Something so simple?  It could make all the difference in the world.  So, arm yourself to identify someone or something that can help and ask the right questions to determine with your physician if you should pick up this hitchhiker or if you should drive on by.  Do your own homework and present it to your doctor.  Have these conversations.  Have intelligent conversations and ask more questions.  Don’t take a blanket statement as truth.  The truth isn’t black or white, it isn’t even gray.  It’s all colors, so figure out the truth for you.

 

Oh, am I pregnant now?  Like, right now?  I don’t know.

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

Alliance for Pelvic Pain Retreat

No.

(I’m not back.)

Alliance for Pelvic Pain Retreat: Interview with Amy Stein

Have ya’ll heard of this?  It’s an annual retreat for those with pelvic pain.  This is not my interview, but I did want to spread the message.  Please note:  There is a minimum attendance required to put on this retreat, so without that, the retreat cannot be held.  (Just a heads up!)

The Alliance for Pelvic Pain on May 20-22, 2016 at Honors Haven, Ellenville, NY. www.allianceforpelvicpain.com

Read more about a previous retreat, which was a huge success!  Please enjoy the following interview with Amy Stein regarding the retreat…

  1. What was the goal in creating the Alliance?

The goal was to create a safe learning environment where participants feel comfortable expressing their thoughts and feelings.  In addition, we wanted to help women meet other women suffering from chronic pelvic pain (CPP) and to teach them self- healing and self-care techniques that they could practice at home.  Furthermore, we wanted to help participants learn about the medical physical therapy approach and mental health approach to treating CPP and  to learn about how bowel, bladder, and sexual function can be compromised due to CPP.

  1. What were the highlights of the weekend in your opinion?

The highlights were the ability for these women to realize that they were not alone and they were able to bond with each other.  We were also pleased with the teamwork of the interdisciplinary health care providers. CPP is a complex condition that affects multiple aspects of life and which requires the participation of several disciplines to account for all areas affected.  The Alliance team all worked very well together and we felt huge reward and accomplishment by offering this to these women.

  1. What was some of the feedback you received from participants?

Some of the comments that we heard were, “This was a life changing experience!” “This was the best weekend of my life!” “This was a monumental event and I’m glad that I was a part of it.” “I felt so relieved to meet so many women with my same condition and to know that I am not alone.” ”I learned a lot this weekend from a medical approach, a self-care approach, and about the mind-body connection.”

  1. How did the Yoga sessions complement the lectures and workshops?

It helped with more mind-body awareness as well as educating the participants on relaxation breathing and relaxation poses.  It complemented the mental health care providers in educating patients on how to calm the nervous system and de-activate the fight or flight (sympathetic nervous system) response.  It also gave patients more options for various stretching positions.

  1. Would you do this again? What do you look forward to incorporating into future Alliance retreats?

YES!  I would love to do this again, assuming we have as good of an organizer as Alex. From a physical therapy perspective, I would like to incorporate more self-care techniques.  We look forward to providing more support groups related specifically to their condition.  We would also like to have male patients in the future.

 

www.allianceforpelvicpain.com

Break

For almost two years, Blog About Pelvic Pain has provided weekly posts.  (Well, there were a few weeks there where I failed you…but for the most part…weekly posts. )

The blog is now on an immediate and unexpected break.

 

But, the blog will return because it has to return.

Trusting Estrogen Part 3

So let’s back up.  Way up.

Estrogen.

People are scared of estrogen.  People don’t understand estrogen.  People hate estrogen.  People love estrogen.

We have a lot of emotions towards estrogen.

Estrogen can help with vulvovaginal issues.  So how do you know what kind of estrogen to use?  That is a really big question.  Estrogens can be given orally, via a gel, with a patch or topically.

Oral, gel and patch estrogens are meant to be absorbed throughout your whole body.  That is considered “systemic” absorption.  That is body system wide.  Topical estrogens are to be applied to the vulvovaginal tissue.  They are typically only absorbed “locally”.  This means that the estrogen isn’t going to affect your body outside of the vulvovaginal tissue.  The tricky thing is that there are some women who have sensitive nervous systems.  These women do notice more systemic absorption of topical estrogens.  They might notice mood irritability, breast tenderness among other body changes.

One thing you must know:  Just because you are using systemic estrogen does NOT mean you are getting an adequate amount at your vulvovaginal tissue.  Many, many women need topical hormones on their vulvovaginal tissue IN ADDITION TO the systemic estrogen they are using.  Most doctors don’t understand this.

To review…

Orals, gels and patch estrogen = systemic estrogen = changes body wide

Topical creams applied to the vulvovaginal tissue = localized estrogen = changes in vulvovaginal tissue (but can be body wide for some)

So, there’s that.

Now if we look just at localized estrogen we can answer some more questions.  There are lots of different companies making localized estrogen.  You may have heard of names like:  Estrace, Premarin, Vagifem and now there is an oral pill called Osphena that is supposed to target only vulvovaginal tissue.   And there are more names that I’ve not listed.  There are three different types of estrogen found in the human body.  The type of estrogen used in these creams can differ.  Each estrogen, regardless of type, needs to be transmitted to vulvovaginal tissue through a base.  So, all estrogens are mixed with a base.  What we’ve got here now is different types of estrogens and different bases.  We’ve got a confusing situation.  We’ve almost got too many options.

Too many options.  It’s true.  But, when you go to your doctor, it might not seem that way.  It might seem as if there is only one or two options and those are called Estrace and Premarin.  Doctors get lots of free samples of Estrace and Premarin.  I’m going to talk about only three topical options because if I talked about any more I might type forever and have to rename this entire blog Blog About Pelvic Pain and Also A Lot About Topical Hormones – But, Men, I Have Stuff For You Too, I Promise and oddly enough – that url was taken….  Who knew?

Let’s talk about Estrace.

Estrace is estradiol + propylene glycol.

Estradiol is the estrogen and propylene glycol is the base.

Estradiol is is bio-synthetic.  It is very much like what our own body produces.  It is a very helpful estrogen.  It is a very powerful estrogen.  It is my favorite type of estrogen for women to apply topically to the vulvovaginal tissue.

Propylene glycol is an alcohol base.  So…if you already have issues at the vulvovaginal tissue – say you already have pain and are seeing your doctor to resolve this pain, then applying alcohol (albeit with a good estrogen) to your vulvovaginal tissue might actually burn.

When it burns…ah, let’s talk about when you’ve been prescribed Estrace and it burns.  Oy.  A lot of times a doctor will tell you to keep using the Estrace if it burns, but a lot of times patients just give up.  Because it burns.  Because they went to the doctor to get relief from the burning in their vulvovaginal tissue and were prescribed a topical hormone that created more burning in their vulvovaginal tissue.  Doctors will often say, well, if you’re really deprived of estrogen at the vulvovaginal tissue, then the estrogen alone will burn.  And, they are right – if your vulvovaginal tissue is super duper incredibly out of this world unbelievably deprived of estrogen.  Just touching it to apply anything at all can hurt.  But, for the most part, if your vulvovaginal tissue is super deprived of estrogen and you give it estrogen (without also introducing alcohol), then it will feel pretty decent to good to really nice a lot of the time.  I think that doctors think that the estrogen is burning because they are largely unaware that they are issuing estrogen with an alcohol base.  I think that, honestly, is the main problem.

The way you get around that is by compounding the estradiol in a very gentle base.  There are tons of bases out there with really exciting names.  But, I like to keep it simple.  I like plain old coconut oil as a base.  It’s good for your, it’s anti-microbial and I haven’t met anyone that it irritates.  (Actually, one person was irritated by it and they ended up using Slippery Stuff as their base.)  The point is, there is a base option out there for the very sensitive vulvovaginal tissue.  The downside of this option is that insurance doesn’t pay for compounded topical hormones.  Insurance doesn’t get it.  The other thing is – you have to advocate for yourself and ask your doctor for this.  They aren’t going to jump right to it most of the time, but they have probably heard of the idea of a compounded topical hormone.

Let’s talk about Premarin.

Premarin is made from pregnant horse’s urine.

Pre(gnant) + Mar(e) + (Ur)in(e) = Premarin

This is not bio-synthetic…because it’s from a horse.  It’s considered a conjugated equine estrogen (CEE).  This means that it is a horse estrogen that has been converted to a form that can be used by the human body.  The implications of this are that the estrogen sticks to your body’s estrogen receptors very aggressively and it’s affects last for a really long time.  The other part of this is that our body doesn’t metabolize these estrogens in the same way that it would metabolize something that is more bio-synthetic.  For some women, this has been really problematic.  You can google it and find lots of crazy stories.

Nevertheless, Premarin is heavily marketed to physicians and it is heavily used by physicians.  It’s not my first choice, by any means, but it’s one choice and for some people it’s better than nothing at all – if they can tolerate it.

That’s the basics.  The basics of the basics.

 

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