I want to preface this post with a warning. What’s about to follow may make some people uncomfortable, but it’s an issue I feel strongly about and want to educate others so that they don’t have to go through what I’ve gone through these past six (nearly seven) years (so far). If you think you can’t handle a post on woman’s health, then I advise you to stop reading now.
A bit of medical history, all leading up to where I am today. When I was 13 I was diagnosed with a Patello-Femoral Syndrome in my right knee, I did physical therapy and sort of grew out of it (I still have minor pain once in a while). When I was 21, I had surgery to repair torn cartilage in my right wrist. When I was 23, I had surgery to repair a torn ligament in my right shoulder.(I’ll let you librarians research what that is – since that’s not what this post is about). I had a hymenectomy and was A-OK. When I was 14, I was diagnosed with
Well, that’s not too bad – why the warning? That was just some background that could have something to do with the condition I’m being treated for now.
As many of you know I’ve been complaining about back pain and physical therapy for several months now (since February), what I wasn’t complaining about was the pain and drugged months before that. But why all the drugs and pain and therapy? It turns out that I suffer from a condition that many women live with their entire lives without realizing it’s not normal! Which is why I want to write this post to educate as many people as I can so that they don’t have to go through a life of pain.
During that timeline I went for my first visit to a woman’s doctor. I left that office without having a successful exam done. Why? Pain! The doctor was unable to use any of her instruments without making me scream. For those of you who don’t know – this is not normal! But how would I know? I’d never been there before. A year later I went to a new doctor for my annual visit and given her experience, she didn’t let a little pain stop her from doing her job. She ended my visit by telling me that the pain was all in my head, probably from the trauma of my first surgery.
During the years that I saw that doctor, I went back to her several time complaining of extreme pain – this from a woman who waiting over a year to have surgery on her wrist because she was going to England to study. I have pushed through a lot of pain in my life – and for me to go to the doctor because of pain is saying something (ask my hubby – who always tells me to go to the doctor when I don’t want to). Anyway, my doctor spent years telling me it was all in my head. Telling me that I had control of my muscles and could stop the pain whenever I wanted. Can you imagine what that did to my morale?
One day I was in the bookstore waiting for my husband to finish reading his role-playing games when I saw a headline that made me stop. The article was about a woman who was unable to have sex with her husband due to extreme pain. I read the article from start to finish and found a medical term I could bring back to my doctor – vulvodynia. Armed with the name of a possible condition I felt a bit more confident – a confidence that floundered as my doctor once again told me that it was improbable that anything was wrong with my physically – and that it was all in my head. I asked to see a specialist anyway, just in case and thank goodness I did!!
I didn’t even have to spend more than 2 minutes in the specialist’s office before she diagnosed me with vulvodynia and vestibulitis. It turns out that for years doctors have been telling women with my symptoms that they’re crazy – maybe not in those words – but basically they’ve been saying that those muscles are built to open and that the fact that they can’t/won’t is all in their heads!
My new specialist started a program of treatment that lasted more than a year. We started with shots of muscle relaxers into my pelvic floor muscle. In addition to that I had to take oral muscle relaxers – me – someone who gets tired from a normal dose of Motrin. After that I had to go to physical therapy – yes they have therapy for this! Therapy consisted of muscle massage and strengthening of my legs and core. By the end of my treatment my pain had come down from a 10 to a 3 and I finally felt better about myself – knowing that it wasn’t all in my head.
The problem is that vulvodynia is something that you have to live with your whole life. And so after a couple of years the pain came back. I went back to the specialist to try a new treatment. This time the drug dosage was upped and I turned into a zombie. I had to start drinking coffee (something I don’t normally do) to get through the day – I almost fell asleep at the wheel more times than I can count and I was cranky all of the time. When I complained to the doctor we went back to shots! Then back to physical therapy. This brings us to this February.
This time around I have found a physical therapist who takes a different approach to treating pelvic floor pain. The fact is that our entire body is linked – we know this, but yet we never seem to treat it that way. As my new therapist went about her treatment, she found that by fixing my pelvic floor pain she was breaking other parts of me. At first it was my lower back. I couldn’t walk or sit or move without pain. I went through PLA like this! Next it was my hips. Every step I took, I would feel my leg slide out of the hip joint and hit my groin – causing me to gasp and nearly fall over. I went through CIL like this. Next it was my upper back and shoulder – and I got to walk up the hill to my hotel at SLA like this. Today it’s my knee (and still my back).
But even with all of that my original pain has gone from a 10 to a zero for the first time in my adult life!! This holistic form of treatment is not only fixing one problem, but it’s fixing problems that my previous physical therapists didn’t fix quite right.
Why am I telling you this? Not for sympathy – but to educate you! If I had had an educated doctor for that first visit, I may have been diagnosed much earlier on. If I had known about the condition before going to the doctor, maybe I could have asked if it was a possibility. I don’t want other women to go through everything I’ve gone through – I want them to know that it’s not all in their heads! I want them to know that they’re not crazy – and that it’s a real and treatable condition.
Some people ask me what causes this – the fact is that they’re not sure. Since the condition wasn’t even recognized for so long there is little data out there. One theory for me is that I have scar tissue from my first surgery or that the trauma that led up to having that surgery caused damage. The other possibility is my posture – which was been altered due to my knee and shoulder problems. The National Vulvodynia Association has a list of possible causes as well.
Well, I think I’ve droned on long enough – I hope you learned something – and I hope you share it with all the women in your life that you care about. It’s important that we’re all more educated so that there are fewer of us out there living with pain.
As for me, I’m doing great!! I still can’t walk long distances without pain – I can’t sit still or upright for long – but I know I’m getting better!! I know I’m going to get my strength back and hopefully this time it will stick!!
If you’ve made it this far – I’m glad I didn’t make you too uncomfortable and I’m glad I was able to teach you something new today!