3. 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]