I'm writing this in response to Daliah's post Let's talk about vaginas since I realised that I had more that a comment's worth of things I want to say. Daliah, thanks for starting this conversation. I too looked here for resources when I was learning about this condition. I really wish more people knew about vulvodynia because I spent years telling people that bike seats were uncomfortable and tampons were painful without anyone suggesting something might be wrong. So I've told lots of my friends that I have this condition and almost all those exchanges have been positive. It really helps to talk to someone and have a support group. And now I'm going to try and very frankly tell you what my experiences with vulvodynia have been.
My History
I have probably had vulvodynia for 4 or 5 years, although I didn't realise it until I started to be sexually active 2 years ago. Once I realised something was wrong (by confirming with a friend that it was not supposed to hurt when a guy went down on you!), I talked to my parents, who are doctors, and did a bunch of research and figured that I probably had vulvodynia. I was referred to a gynecologist who confirmed the diagnosis. I started making progress with him, but then got worse right before I moved cities. Then last February I was lucky enough to take part in this Multidisciplinary Vulvodynia Program (MVP), which exposed me a bunch of different treatment options. That program has now ended and I'm working with a physio and my family doctor. I haven't recovered and my pain goes up and down although I am definitely further ahead than where I started two years ago.
Vulvodynia
I'm not a doctor but I have been trying to learn a lot of vulvodynia (also known as vestibulodynia). The MVP had several educational seminars for the 12 of us in the program at that time and most of this information comes from there. Basically, we're not really sure why some women get this condition. For some reason, after an initial insult, some women will end up with some of the touch-sensing nerves around the opening of the vagina changing into pain-sensing nerves. These pain-sensing nerves propagate and through biopsies they have seen that women with vulvodynia can have as many as 100 times more pain-sensing nerves than is normal. That initial insult I mentioned above can be something like a yeast infection, hormonal birth control, vaginismus, food allergies, or sensitivity to things like laundry soap. The problem is that removing the initial insult will not fix the problem. Instead, your whole body becomes hard-wired to sense vulvar pain. You end up with a vicious cycle where your body's reaction to the pain actually causes more pain thanks to things like cortisone and vagnismus, which is when your pelvic floor muscles tense up in an attempt to stop the painful activity.
What Has Helped Me?
Through the MVP I met 11 other women suffering from vulvodynia. The first thing that helped is learning that we're not freaks. All the other women were interesting and attractive and normal! And they were friendly and so helpful to talk to. It's so nice to feel like someone else understands.
I used topical estrogen cream for a while which helped a bit but then I sort of plateaued.
The best thing I discovered through the MVP was physiotherapy. I have continued to see the physio since the program ended. She specialises in pelvic floor physio and the goal is to regain control over the pelvic floor muscles. At my worst, even if I didn't have any pain there was no way I could have even considered having intercourse because my pelvic floor muscle was so tight it was like a wall. She uses biofeedback which is sensors (little sticky things placed near the anus) that tell you how tight the muscle is and displays it on a screen. We focus on learning how to relax the muscle. She taught me how to really learn where exactly the pain is located and what factors affect my pain (eg, menstrual cycle, stress, travel). We also use wax inserts which are like candles of increasing diameter.
We also learned about mindfulness as a form of treatment. This is helpful for learning to relax and not panic. Some of the women in my program thought this was really helpful and it's a non-invasive approach to try.
You need to learn how to have sex. First, I've decided not to limit my definition of sex to sexual intercourse. I don't really think of myself as a virgin since I've had a two-year relationship where we would have had intercourse if we could have and instead enjoyed an active sex life involving everything short of intercourse. Here are my tips: Focus on different erogenous zones, like the breast and anus. Figure out exactly where your pain is; my clitoris is 'safe' so focus on that. When we were ready to finish usually my partner would place his penis between my thighs (with or without lube). Experiment!
What are my worries?
Sometimes I feel like I'm never going to get better. Sometimes this makes me panic. I try to deconstruct this thought and think of evidence against it, like all the progress I've made.
I feel guilty that I recently broke up with my boyfriend who stuck with me despite all this but never got to have intercourse.
I worry about meeting new men. I feel like not being able to have intercourse is a pretty major failing in a sexual partner and don't know if anyone else would want me.
I worry about the next step in my treatment. My goal is to get as far as possible with the physio before resorting to medication to treat neuropathic pain. Meds that are used are tri-cyclic anti-depressants and anti-convulsants. I'm scared of the weight gain that a lot of women experience and feel like I would rather stay as I am now than feel unattractive and overweight.
I worry about my flare-ups. Sometimes when I'm travelling or right after my period I get really itchy and in pain. Ice and running warm water over the area helps but it means I can't sleep, focus or sit still sometimes. This is bad when you're at work or camping.
Conclusion
So that's my (rather long) story. Please share yours and get the word out about this condition. There are lots of treatment options and lots more to learn about vulvodynia. If you have any questions that you think I can help you with, please ask them in the comments. Thank you for reading!
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Also check out this guest post written by a friend of mine about vulvodynia.
Oh, thanks for linking to your friend's story. That's a really good post. I had forgotten about it.
Good post. Thanks.
Yeah, I'm with you on the physio- it was great. However, I was lazy and stopped doing my exercises and now I am right back where I started two years out of physio- please don't be me.
I am also with you on the panic, I am going through a particularly bad phase of it right now...
Yea, I haven't been perfect with doing my exercises either. It's easy to fall off the band-wagon, especially if you get worse for some reason and don't want to face it, so you start avoiding everything that will remind you. Not a good habit!
One thing that I found helped with the panic is an exercise from cognitive behavioral therapy called a thought record. Basically you look at some situation that makes you think irrationally and try to replace all those irrational thoughts with reasonable ones. ie "I'll never get better" can be replaced with "It may take time, but there are lots of techniques I haven't tried that might work for me." The idea is next time you think your irrational thought you already have a way of refuting it and will hopefully spend less time getting worked up about it. Here's a simple template I found by googling: http://www.cbt.ca/thought_record.htm
bike seats contribute to yeast infection, a vaginal yeast infection is usually caused by a fungus called candida albicans which is normally found in small amount in the vagina. www.1wallmart.com/products-seller.php
While this is an interesting and useful piece of information I believe Carol references bike seats because it shows the amount of vaginal pain that is involved in such a sexual pain disorder and how debilitating and limiting it can be.
Yea, I've had a bunch of swabs done and yeast is not usually a problem.
I live in a city where everyone bikes and it's hard to explain why I don't. Plus it's just inconvenient that I can't. I have to miss a bunch of activities with my friends cause they all like biking. I haven't tried one of those bike seats with the hole in the middle yet; I wonder if it would help.