The following was written by a good friend of mine about her experiences with vulvodynia, otherwise known as really bad, unexplained pain in your vagina. She wanted to write this anonymously, for obvious reasons ... like the fact that her treatment involved something called the "Ballsy Supercock." OK, seriously, this is an important women's health issue, and I urge you all to read her words. --Ann
I was always prone to yeast infections, so when the vaginal pain started, about a year and a half ago, I assumed that was what it was. The opening of my vagina was too raw for sex, and riding my bike was painful, too; any pressure made it feel like there was a sharp blade under my skin. I bought Monistat and treated it and thought nothing of it - until it didn't stop. About a month later, I finally went to my gynecologist, who told me I didn't have a yeast infection, and in fact she didn't know what I had, but I should just keep wearing cotton underpants and washing after I swam or had sex. Time passed, while I spent an inordinate amount of money on CVS yeast infection medication, but the pain never went fully away. After another six months or so, I went back to the doctor, who poked at my vulva with a Q-Tip and, when I almost jumped out of the stirrups with pain, told me I might have vulvar vestibulitis.
Vulvar vestibulitis is a form of vulvodynia, the umbrella term for "unexplained but really bad vaginal pain." It's characterized by burning pain and inflammation in the vaginal region due to a hugely increased development of nerve endings, sometimes - but not always -- traceable to an initial irritant (like, for example, over-the-counter yeast infection medication). It is very poorly understood and commonly misdiagnosed. Of the 13 million American women (that's one out of six!) who experience vulvodynia every year, it's estimated that half don't even know what they have. These numbers are particularly maddening given how debilitating the condition can be: Women with really bad vulvodynia can become unable to walk, wear pants, or sit without pain, and it can last for years or even for a lifetime. Imagine, by contrast, how the medical community would approach a disorder that made any friction unbearably painful for one in six penises.
A 2003 study at Brigham and Women's Hospital in Boston was the first to comprehensively study disease rates, as well as rates of diagnosis and treatment; the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians decided to finally educate their members about vulvodynia shortly thereafter because the numbers of misdiagnosed patients were so alarming. Recently, a few mainstream articles, including one by Jane Brody in The New York Times, have come out discussing the disorder, and Charlotte even got vulvodynia on an episode of "Sex and the City." (Her experience was hugely unrealistic, not surprisingly - and it was gone and forgotten by the next week). Regardless, it took me over six months and multiple trips to the gynecologist before anyone even said the word.
Once I was diagnosed, treatment began. Because the good specialist in my area wasn't covered by my health insurance, I went to a gynecologist at a nearby university hospital who called my vagina my "bum" until I finally barked at her: "You mean my vagina!?" She also left a speculum inside my vagina for what seemed like at least 10 minutes, which is pure agony for a vulvar vestibulitis sufferer ("You keep tensing up," she said. "See, that's your problem right there, you need to relax your bum"), and then prescribed me two things, first the 3-month-long vaginal insertion of a slow-leaking estrogen ring about the size of a thick bracelet, and secondly a topical numbing cream, which I was supposed to use before sex to ease the pain (not surprisingly, numbing cream did little to improve my sex life). The next gynecologist I saw, when I finally buckled and paid the $300 out of pocket to go to the specialist, told me that both treatments were useless if not counterproductive, since numbing cream wears off quickly and storing foreign objects in one's vagina for months doesn't help much with vaginal inflammation.
Thus began the second, far more pleasant, phase of treatment. The new specialist was a talkative, funny nurse who had had vulvar vestibulitis herself and told me very confidently that she would get me better within the year. She put me on an aggressive and comprehensive plan in which I was blasted with basically every known form of vulvar vestibulitis care, barring surgery: nightly sitz baths, after which I blow-dried my vaginal area and applied Vaseline and other topical creams; antidepressants to help with the pain; and weekly physical therapy appointments, where a kindly therapist massaged the tense muscles inside my vagina and pressed on the painful parts of my vulva to desensitize them. To stretch out my tightened vaginal muscles to the point where I might be able to tolerate vaginal sex again (at this point, I hadn't had intercourse without pain for about 9 months, which is actually nothing relative to most vulvodynia sufferers), I was also given an increasingly large series of "dilators," these smooth plastic zeppelin-like cylinders that I was meant to practice with nightly. I would recline on my bed and dilate myself while reading novels. It was a weird combination of the sexual and the totally unsexy. Around this time, I had a dream that I was making out with Brad Pitt, of all people, until he pulled out his cock and it was the size of a man's arm; I told him, "I'm not quite at that level of dilator yet, sorry."
The treatment began taking up large amounts of time, money, and energy. One brand of antidepressants made me so speedy and anxious that I hid in my office all day so my coworkers wouldn't guess I was on drugs. I had to lie to my boss about my weekly physical therapy appointments, because there was no way I was letting it get out in my competitive, largely male office that I was suffering from Dysfunctional Female Bodypart Syndrome. Even with my friends, it was sometimes difficult to talk about. People were very supportive when I did tell them, even my male friends - a gay friend overcame his innate discomfort with all things vaginal to ask every couple of weeks, very gallantly, how I was doing "down there"; another friend with health problems of his own spent ages on Google to get a sense of what I was going through - but it was always a little awkward to explain. My boyfriend was absolutely kind and supportive, even coming to physical therapy to learn how to give me vaginal massages himself, and it was sexually freeing to take the focus off of intercourse for a while. But I still felt unsexy and impotent sometimes while sex was impossible, like I was failing at something that used to come naturally. I had irrational fears that he might run off with some girl gifted with a functional vulva. Meanwhile, I was obsessing about dilators and getting my bath every single night without fail; it began to feel like this really huge part of my life that I still didn't quite know how to share with many people.
Luckily, my physical therapist and my gynecologist were both wonderful, and I was able to improve fairly quickly. It was encouraging to feel less pain every week - to get a sense of how my body was healing every time the physical therapist poked around my vulva and I had less of an urge to kick through the wall. As the weeks passed, I ascended through several levels of dilators, and finally graduated the highest level (I could not have been prouder of myself) and had to buy a dildo at the next-highest size to keep going, a giant veiny rubber thing called "Ballsy Supercock." After about five months of treatment, during which I religiously dilated and bathed and blow-dried and Vaselined and ointmented my vagina (I often felt like I was nursing some very picky, sharp-toothed animal), I was finally cleared for intercourse - after which I immediately, of course, got a yeast infection. It was a small price to pay.
Most people with vulvodynia and vulvar vestibulitis don't have it as easy as I did, with relatively good health insurance, good care, and a partner willing to invent endless jokes about "vestibules" to make me feel better. My physical therapist told me about a very conservative religious patient who'd begun to experience vulvodynia after losing her virginity to her husband on their wedding night; the husband had just left her after 7 months of sexless marriage. Another couple she knew split up after about 7 years of painful sex. Fifty years ago, we all would have been called frigid and psychoanalyzed to death; 500 years ago, we might have just avoided sex our whole lives. Even now, with more public discussion of vaginal disorders in the health care community and in the media, there's clearly a long way to go in terms of awareness and understanding before vulvodynia will come out of the closet like male impotence did (and, of course, since there's no drugs for vulvodynia yet, we don't have Big Pharma on our side making normalizing ads).
For all of these reasons, I originally wanted to put my own name on this story: to communicate that pain is pain no matter where you feel it, and there's no reason that vaginal pain should be any more shameful or embarrassing than knee pain or back pain. But I can't quite countenance making this my first hit on Google. Even so, I'm hoping that, as the medical science develops and more and more people open up about vaginal disorders, sharing will become easier. It's too bad that one of the hardest parts about my vulvar vestibulitis was figuring out how to cover it up.
For more info and resources, check out the National Vulvodynia Association.
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Thanks for writing this - whoever you are -- it was a great read, funny and touching. I'm so glad you had a supportive boyfriend in all this.
Any chance you could send the doc who kept calling your vagina your "bum" this story? Seriousy, she needs to read it!
Thanks so much for posting this! I was diagnosed with VV in February and will finally be seeing the only specialist in my area on Monday! I'll bet I wouldn't have had to wait so long for an erectile dysfunction specialist... I'm one of the lucky ones--after a few months and a prescription for Paxil, I'm able to have intercourse, wear jeans and more or less go about my life. VV is a truly terrifying, lonely syndrome, so please keep posting on the subject.
For any fellow sufferers, here's a great, really comprehensive site: http://www.vulvodynia.org
Thanks for sharing this. I had never heard of VV before and am so sorry for what you had to go through (the pain and the difficulty in finding adequate treatment.) I'm really glad you found competent and supportive health professionals and that you had such a great partner by your side.
Thanks for sharing your story and i wish you all the best :) (especially some pain-free & pleasurable lovin') :)
I think Susana Kaysen (author of "Girl, Interrupted") wrote a book about this, called "The Camera My Mother Gave Me." I never even knew this condition existed until I read this book.
secondly a topical numbing cream
This is a pretty common treatment for vulvodynia, esp. the type of vulvodynia which the symptoms of are pain during sex but not at other times, and it pisses me off. If it works for some vulvodynia suffers, more power to you. My perspective is that the numbing cream is a treatment for the male partner, not for the sufferer herself. Sure, it allows her to have PIV sex, but she can't feel it!
wow- never heard of this before. Thank you for sharing this.
My girlfriend of 5 years back in college had a similar condition. It was awful. We found out when we had penis-vagina sex for the first time (both of our first times) and it was bad. She went to doctors for months or years. We tried having sex several times, but she was in tears the whole time. A couple times through sheer will I think she made it into a state of pain-exhaustion and we could have intercourse and she could almost enjoy it. It was traumatizing for me to see her in that way, and to want and try to "get off" for her and for me while she was in such pain.
I did pretty good at supporting her, but in retrospect I could've done better. I never pressured her for penis-vagina sex. But I definitely wanted it (I was like 21 at the time, and had never really done it). And I think by not renouncing penis-vagina sex I put some small amount of psychological pressure on her.
If I could go back I would've said "I don't care if we ever have penis-vagina sex. Our sex life is amazing." Which was sort of true. Seriously, between oral and manual sex and rubbing up on each other, we had some amazing, totally comfortable, mind-blowing sex.
But neither of us really could fully accept that at the time. She was terrified she was never going to have "normal" sex again, and was willing to force her way through all kinds of pain to make that happen. I wanted "normal" sex too.
We broke up for unrelated reasons eventually and I don't know what happened to her. We still talk, but we didn't talk for several years and I don't feel comfortable just saying "how's your vadge?"
Anyway, my advice for men who are dating someone in this position:
Get over the penis-vagina sex, at least for the time being. It's not that serious, really. Be vocal with your partner about how much you love your sex life. Learn about "enthusiastic consent" and embrace it. It's totally possible to have an AMAZING sex life without penetrative penis-vagina sex. Seriously, just rub uglies together in creative ways. And just learn how to enjoy naked freaky time, regarless of the specific acts or outcomes.
And do EVERYTHING in your power to make sure she knows how much you get off, and how much you enjoy getting her off.
I'm not saying this shouldn't be treated. It should. But know that it could take a while, and if you do it right, the treatment period will be just as fulfilling and sexy and awesome as everyone else's sex lives.
In fact, this is good advice whether or not your partner has vaginal pain. The sex is just better if you think this way.
Did someone steal my journal?? Seriously though, this is exactly what I went through, minus the dilators. I stopped at antidepressants, b/c those worked very well for me, until I kept having to increase the dosage to keep up with the progression of my VV. It took two years with an amazing doctor, but I think I'm better now. It's amazing how many women are treated for yeast when it's actually vulvodynia!! I had a not so great doctor put me on round after round of diflucan coupled with over the counter creams, and holy shit, when I finally did get a YI, it was hell to get rid of. I also got lucky that Mr. KMP was patient and compassionate and so understanding. I felt like a complete failure and like my body was broken, and I convinced myself that he would leave for someone else, despite all evidence to the contrary. We had (seriously painful) sex probably 5 times in 2 years. I'm so glad to see more and more people talking about this!!!
Hey, this is the author of the piece. It's nice to know that other VV sufferers are reading it, I had really hoped to reach some. Frumious, yeah, that topical numbing cream was bunk -- it didn't actually numb me at all (in fact, the first gyno told me to apply it 10 minutes before sex; the second gyno told me it wears off after about 10 minutes). Part of my current regime, actually, is to apply the same stuff to a cotton ball and leave it on overnight; apparently that's been shown to have some long-term effect on quieting the pain. Honestly, who knows. In any case, I'm reading the comments closely today, so anyone with questions about this stuff should feel free to ask!
What a lovely post. Thank you so much for sharing, anonymous!
I've been dealing with some vaginal issues for a couple of years now (including a 10-month-long yeast infection that went untreated because I didn't have health insurance until March), and last year my boyfriend and I had a period of about 6 months where every time we had sex it was painful. But he was wonderful and worked with me on it, and finally, one night in November, there wasn't any pain. It was a miracle.
Now, my gynecologist thinks I might have VV, which doesn't surprise me at all.
I'm unclear how taking anti-depressants helps. Seems rather 'it's all in your head.' And yet it seems to be working for some people. What actually causes it? If massage and dilators help, is it like a strained muscle? Which is both funny to think about: 'Damn, I think I pulled a muscle in my vagina' and much less funny to actually have!
I first heard about this condition a few years ago on a television interview. A woman experienced estremely painful sex with her husband, and her doctors could never figure out what was wrong with her. She and her husband were married for 11 years, and of course, this problem took a toll on their marriage. At one point, she told her husband to divorce her so that he could find happiness with someone else who didn't have this problem. Her husband said that he loved her, and he wanted to stick by her to see if they could find out what was wrong with her medically. Well, her doctor finally diagnosed her with a severe form of VV, and he recommended surgery. The surgery was successful, and the woman and her husband were able to resume a normal marriage. I thought it was great that this woman was able to overcome her VV, and I also thought that she had a wonderful husband who really supported her. I don't know if every VV case can be treated successfully, but I felt happy for this woman.
This is an amazing story, and wonderfully written. I occasionally experience mysterious pain, as most of us probably do, and sense that there is no explanation.
It's both frightening and infuriating to read about your ordeal. Thank you for this.
I am really moved to think how many people may recognize themselves in your story, and be able to get help.
Thank you to feministing for these vaginal health discussions. The whole thing seems like such a fucking mystery to so many health care professionals, and it's nice to know feministing is a resource on this.
Any other good recommendations for womens' health info sites?
JPlum: the anti-depressants are actually used off-label because they seem to reduce vulvar pain for some people -- i.e., it's not that you're depressed, it's that you've got, as Charlotte memorably put it on SATC, a "depressed vagina." I don't totally understand how this works (something to do with quieting nerve endings) and would love to hear more about it if someone else does. For me, I was doing so much at once that it's hard to say what really helped the most. But clearly they've been good for people like kissmypineapple. Erik -- it's great to hear a partner's perspective on this. I really wish I'd had something like that to share with my boyfriend when I was first diagnosed, instead of all these awful horror stories about broken marriages!
BallsySupercock -- You are so awesome to share this with us. It looks like a lot of people connect with the story, myself included. Although I've never had VV, a terrible inclination toward bladder and yeast infections has made me call my vagina "The Frumious Bander-Snatch"; your calling the problem "frumious" made me giggle.
BallsySuperCock,
Thank you so much for sharing this with us and I know it will be enormously helpful to women experiencing this problem.
And to everyone else,
Am I the only one completely annoyed, disgusted even, that this condition is causing rifts or break ups in relationships? I'm thinking what the hell, I thought sex was supposed to be about mutual enjoyment. If one partner is in excruciating pain, then how on earth is this mutual enjoyment? This to me seems to be speaking more to a felt obligation to please men at a woman's own expense, which in my eyes is bordering on levels of date rape or other kinds of male-centered social pressure. What does everyone else think about this issue?
I had not heard of antidepressants being prescribed for that type of pain. Very interesting.
Excellent post, Ballsy, thank you. It's always good to talk about these things as openly as possible. I'm betting some woman somewhere just read this post and said "Hey, that might be what's wrong with me. I'm going to ask my doctor about it."
How do you massage a vagina, anyway?
"JPlum: the anti-depressants are actually used off-label because they seem to reduce vulvar pain for some people -- i.e., it's not that you're depressed, it's that you've got, as Charlotte memorably put it on SATC, a 'depressed vagina.'"
Or a vagina that's not even depressed but reacting to a side effect? I've heard of an anti-hypertension med being prescribed off-label to treat migraines, BCPs being prescribed off-label to treat acne, etc...
"I don't totally understand how this works (something to do with quieting nerve endings) and would love to hear more about it if someone else does."
I'm surprised that anti-depressants work for it. I have heard that some anti-anxiety meds have a muscle relaxing effect which can help with pelvic exams, vaginal sonograms, etc.
BallsySupercock,
Thanks so very much for your sharing. I didn't realize it at the time, but VV afflicted a girlfriend that I once had. We "made do" with oral and anal, but I think that not being capable of having "normal" sex really took it's toll on her. Hell I even thought our love life got better, but she stayed angry & frustrated. I was wondering if you ever did find a cream or know of one that would have assisted with vaginal intercourse and dilation treatments?
It's a specific class of anti-depressants, tricyclics, which my ex-pharm-tech boyfriend told me aren't prescribed for depression too often any more, but are prescribed a lot for neural pain. My doctor thinks that the chronic inflamation causes a scrambling of the message my nerves send to my brain - I should register pressure or pleasure, but it signals pain. The elavil I was taking fixed that somehow, although I was monitored pretty closely by my doc, since I don't have depression, antidepressants can cause some wacky side effects if I miss a dose (which I did a few times, and turned into a hypersensitive, crying, paranoid mess, convinced my entire family and boyfriend hated me). I'm off elavil now, and we took me off of HBC, and my pain is virtually gone. It seems that in my case (which is not the case for everyone), I don't process synthetic estrogen correctly, and I end up with VV. I got an IUD, and our sex life is back on track.
Thanks, KMP, that's helpful. I hadn't heard the thing about scrambled messages, but I do know that tricyclics are prescribed off-label for different varieties of nerve pain. JPlum, you massage a vagina pretty much the way you'd massage any sore muscle -- you just do it from a slightly different vantage point! My physical therapist had hilarious stories from her days training to do women's health PT: all of the trainees had to practice on each other, on conference tables in a chilly room. It's a rather bizarre thing to have a stranger do; you have to sort of convince yourself that it's just another muscle.
JPlum: KMP and Ballsy Supercock are right on. I actually went on anti-anxiety meds to help reduce the psychological strain of VV, but did find that they reduced the pain. Some meds basically reroute the path pain takes to the brain, which can be really beneficial with something like VV. It's less "all in your head" and more "all in your vaginal tissue." When you've got that kind of pain, your body can sort of hold onto it as a subconscious reaction in order to force you to give that area a rest. In my case, I was being treated for yeast, even though that wasn't the issue, and still occasionally attempting vaginal intercourse up until my official diagnosis, so my vulva and vestibule remained constantly inflamed and tense. This led to other problems (anxiety and IBS), so as far as I can tell, the relief from the stress of my illness allowed my vag to chill out , so to speak.
Antidepressants of all kinds, both tricyclics and the more common Prozac, Lexapro, etc., are commonly prescribed off-label these days for chronic pain. There's one called Cymbalta that is approved for the pain of fibromyalgia, it's not an off-label use. I have a chronic pain condition of my own--chronic pancreatitis--and I've been on antidepressants to help with the pain. None worked for me and the side effects sucked so I'm not taking them anymore (besides, I'm pregnant at the moment so I wouldn't be taking them anyway.)
BallsySupercock, this was a great post, very brave of you. Women with chronic pain are often ignored, patronized, or marginalized by the medical establishment. We're sent to psychiatrists and therapists, not given medical tests. And we have to be proactive about our own medical care if we don't want to spend our lives suffering. It's often difficult to find and enroll in a pain management program, when adequate pain control should be the right of every patient. I'm lucky in that I have a great pain management provider. I can't imagine how much more difficult it would be to get decent medical care when your pain is in your vulva/vagina. I hope you continue to improve!
BallsySupercock, (LOVE IT!)
I'm a young woman who works for Scarleteen.com and wrote about my own experience with VVS/vulvodynia. Your story sounds so similar to mine, it touched me deeply! Women are suffering everywhere; we gotta get the word out. I've had this crap since I was 13 freaking years old, if not younger (I'm 20 now). Please take a look at my story as well. I'd love to compare notes and trade info. Beautifully written!
http://www.scarleteen.com/article/pink/too_young_for_sexual_pain
Lauren: Oh dear, that sounds like a nightmare. I'm so sorry about what you went through, and at such a young age! You were very brave to stand up for yourself and demand treatment. It's crazy how unequipped doctors can be about diagnosing this. I really hope you're doing better now.
One of my best friends is a women's health Physical Therapist, it is great to hear about such great results with the type of intervention that PT's can provide...spread the word so that we can keep our vadge's healthy
Was your gyno by any chance Canadian? My midwife was Canadian, and she called it a "bum" more than once. As in, "let's just take a quick look at your bum." I thought it was a little wierd, but in every other way she was awesome, so I let it slide. Sounds like yours was less than awesome by a long ways.
thank you so much for posting this important piece on the blog. i think that vulvodynia should become as important an issue in feminism as is reproductive rights, etc. i was finally diagnosed with vulvar vestibulitis in december 2006 after suffering since december 2005. my symptoms first started to appear about 6 months after i had vaginal intercourse for the first time. my gynecologist (not a specialist) told me to get a dildo slightly bigger than my boyfriend's penis and insert it in my vagina for 45 minutes per night. this was excruciatingly painful, so i never did it. by the fall of 2007 i was still suffering and i was miserable. my boyfriend was always super supportive, but i couldn't help but feel inadequate. i developed severe insecurities that were crippling in my daily life as a result.
in december 2007 i found out about physical therapists who specialize in the pelvic floor muscles. she helped me trace my history with vulvar pain, and we found a couple of factors that might have caused it: recurrent yeast infections and uti's beginning in dec 06 and the PILL. studies have shown that the artificial hormone in the pill can throw off the hormonal balance of your vagina and cause pain. i had been on the pill since may 2005, so i never really had sex without artificial hormones in my body. still, i wasn't sure if i wanted to go off it, especially bc my boyfriend didn't want to use condoms and was generally unsupportive of that decision even though he stuck by me for 3 years with vv.
anyway, my pt treated me with dilators, stretches, massage, and lidocaine, but nothing worked. by january 08 I WENT OFF THE PILL, AND EVER SINCE, I'VE BEEN FREE FROM VULVAR PAIN!
the pill is great, but for some women, like me, it can cause vulvodynia, which can lead to a whole host of other emotional problems. ANYONE WHO HAS VESTIBULTIS AND IS ON THE PILL, PLEASE CONSIDER GOING OFF OF IT. it doesn't help everyone, but it might help you!
thanks again for putting this issue out here!
"Women with chronic pain are often ignored, patronized, or marginalized by the medical establishment. We're sent to psychiatrists and therapists, not given medical tests."
Which sucks!
I mean, I've heard of doctors ordering physical tests for physical symptoms and even of non-doctor mental health carers ordering physical tests (like "lately my depression is worse and I feel tired all the time" "maybe your fatigue has a physical cause, take this list of tests down the hall to the blood lab"). Every doctor (and NP, and psychologist, and health care social worker, and so on) should take patients this seriously!
I had heard of this, but didn't really know anything about it...thanks!
chingona: Was your gyno by any chance Canadian? My midwife was Canadian, and she called it a "bum" more than once. As in, "let's just take a quick look at your bum."
Speaking as a Canadian, I've never heard anyone up here use "bum" as a synonym for vagina. Bum = buttocks or anus.
Bluepencils: "Women with chronic pain are often ignored, patronized, or marginalized by the medical establishment. We're sent to psychiatrists and therapists, not given medical tests."
Oh seriously. I have a rocking bad case of Restless Leg Syndrome and Periodic Limb Movement Disorder. Of course it took over a decade to get that diagnosis. Before that I was just told that I had depression and was given anti-depressants - I was sleeping all the time because I was depressed, and my muscle pain was just tension caused by stress. It's just too bad for me that anti-depressants make RLS symptoms worse, and that I was put on ever increasing dosages over the course of eight years. I'm SO glad I finally refused to take my medication and asked for a referral to a sleep lab.
Is it weird that I read this in the voice of Lois from Family Guy? In my head, I mean.
I couldn't imagine the kind of pain and humiliation I would feel going through something like this... you had a lot of courage and I'm so glad your treatment paid off. I'm glad I know about this now, too, and how to talk about it.
Thanks so much for sharing this. Since I was diagnosed with vuvlodynia in October, I've been trying to get the word out as much as possible too. I've been amazed at how many people I've told have experienced something similar. I just feel like if this kind of pain was talked about more often I wouldn't have gone for years assuming that the pain I experienced during biking was because every bicycle I'd ever been on was poorly designed for women. So thank you for sharing your story.
My treatment plan has been really different from yours. I'm curious if you know anything about links between the Pill and vulvodynia. I had been on the Pill for three years (but not sexually active) before I was diagnosed. I found several studies relating vulvodynia to prolonged and early pill use. My doctor has me applying estrogen cream nightly and I went off the Pill. He wasn't entirely convinced that the Pill was causing it but I've gotten a lot better in the past 8 months. I still have trouble with vaginismus, which I developed as a response to the pain, but my external pain is nearly all gone.
I have never cried so much in my life as I did in the first couple months of figuring out what was wrong with me. I also have a really supportive boyfriend, which is wonderful. As far as our sex life goes, we haven't actually had intercourse but I almost feel like being forced to be creative has its advantages. Also, to any one else suffering from this, I found that it is worthwhile to figure out exactly where your pain is. While I couldn't tolerate anything touching near the vaginal opening, (precise) clitoral stimulation was possible. Discovering this made sex a lot more fun :)
So thank you again for sharing your story.
Thank you SO MUCH for writing this and thank you feministing for publishing it.
I was diagnosed with VV at age 19, during my freshman year of college. My experience is TREMENDOUSLY similar to the author's.
You have done a tremendous service to everyone afflicted with this unfortunate condition!!
Thank you for an insightful and beautiful post, Ballsysupercock (hmm, never thought I'd get the chance to write that).
I'd like to see more posts on this.
It's ironic that everyone tried to trivialize the pain, because when I couldn't have sex for about a year b/c of pain everyone (doctors and my then-boyfriend) tried to give me medical advice but I later realized it was psychological (with my now-boyfriend). I guess the medical community just doesn't know enough about the vag :)
Best of luck, Ballsy
I have another chronic pain condition called interstitial cystitis (a mouthful, I know). It causes an enflamed bladder and painful sex. I also have what had been described, other pains around the vulva and vaginal opening. From burning and ripping to acute muscle aches.
A doctor I just went to behaved as though I was making it up. She said, "Look, the speculum is barely bigger than my index finger." Yeah, that's really going to reassure me when ANY touching hurts.
Mind you, when my symptoms first appeared, I was in an abusive relationship and was only beginning to process the trauma of prolonged childhood sexual abuse. My boyfriend started cheating (yet again) when I denied him sex (because it hurt so damn much!) and eventually left me for someone without these problems. So, I'm pretty insecure about my 'abnormal' state. I feel like a failure in this culture that's all about 'pleasing your man'. Should I just grit my teeth through shitty sex? No. I shouldn't be made to feel like a pariah because of this. I'm just a normal woman who has to deal with this. whenever I attempt to talk to friends about it, they behave as though I'm sub-human.
thank you for breaking the silence. I hate not being able to talk about it. It also makes me sad that I wasn't with someone a little bit more understanding... someone who gave a damn about me and not just about his sexual 'needs'. I wish you the best of luck.
Oh, and you know what I love? I've read advice columns in women's magazines about what to do if your partner goes soft. How to arouse him again! How to not take it personally! How to put your needs second to his!
But have I ever read anything for men about what to do when their partners are in pain? How to not take it personally? How to be supportive? NO! If you have something like that (like previous comments by compassionate men here), please post it! I need something to show my partner!
Hello everyone,
I'm fellow sufferer of VV. I must have been "lucky" in that the first doctor I saw diagnosed my correctly--and that was 1989! Yes, I've had this problem for that long. the pill *definitely* caused it for me. Back then, no doctor believed that, and it's kind of a relief to find that it's confirmed now.
Hormones play a huge role in my case. I've had two kids, and while I was breastfeeding kid #1 the pain was entirely gone. I mean perfectly, completely gone. So as much as surgery tempts me because I've dealt with this for so long, I have evidence that a particular hormonal state could put my pain into complete remission. (I thought initially that childbirth had cured me--perhaps a good bit of nerve damage--but the pain came back when the baby weaned.)
I am now seeing a PT, but I don't think much of what we're doing is helping. She is super supportive though, so I do appreciate her help. I am using an estrogen cream--and the PT feels that my vaginal tissue looks de-estrogenized, as if I had gone through menopause. She just found more information about vaginal massage and vibrators, and I just started the massage last night. Yikes! It hurts!
I've got questions for you, ballsy, and anyone else who has had a successful treatment.
1. should I try anti-depressants for pain? I tried amitryptaline (sp?) once, but it didn't make any difference. I take Zoloft now (for panic attacks), and it doesn't affect it either.
2. For those of you who have used massage, how long did it take before it hurt less? I'm afraid that the massage could actually make it worse!
3. Ballsy mentioned vaseline. My PT suggested using a really high-quality lubricant as a moisturizer and then maybe trying one of the more "sealing" lubricants (like the silicone ones) over the top to protect the skin.
The baths are another treatment option I haven't tried, but I have a 2-year-old and a 6-year-old, so I have very little time!
Any other treatment options y'all have tried!
It's such a terrible problem--and it really takes courage to stand up for yourself and say that you deserve to have pain-free sex! I think there's somewhat of a cultural acceptance of sex hurting for women. I feel sort of sheepish going from doctor to doctor saying "I want good sex again!"
Courage (and good sex) to all!!