Alexandra's Story - A Ray of Light After 10 Years of Pain
I can say it - I have vulvodynia. For me that means I experience sex as an intense burning, like scraping a knife over a raw patch of skin or squeezing a watermelon into your nostril. Not fun, to say the least. And it's not just pain with sex. Tampons, jeans, riding a bicycle, and excruciating pap smears leave both me and my doctor in tears.
I was finally diagnosed after 10 years of pain, misdiagnosis, and emotional anguish. I saw six different doctors during this time who were baffled as to why I was in pain and how to help me. Finally my naturopathic doctor discovered that my estrogen level is lower than that of a post-menopausal woman, and I'm 31. I'm starting on an estrogen cream therapy to see if it helps. I'm hopeful, because the only time in my life that I didn't have extreme pain with sex was during both of my pregnancies, which suggests my vulvodynia may be hormonally linked. As I understand it there is more than one kind of vulvodynia, but it is still poorly understood by scientists.
I learned from the recent Vulvodynia Awareness Campaign launched by the NIH that up to 10% of women will experience some level of vulvodynia at some point in their lives. That's an incredible statistic for something most people have never heard of. We suffer in silence, and the personal stories we could share to learn and support each other are few and far between. It's just not the kind of thing you bring up at the weekly office lunch party. I decided to tell my story and put it out here, for what it's worth, hoping to help someone who may be lonely and afraid or inspire someone else to share their experience too.
Thinking back to when I first felt the grating, stinging pain, at the time I really didn't know what to think. I couldn't get past the feeling of being broken, the thought that this is not what sex is supposed to feel like. I didn't know where to turn. I remember asking my mom and my doctor if sex was supposed to hurt, and when they reassured me that it didn't, I felt myself crumbling inside. I got up the courage to go to a gynecologist, who very painfully probed me and told me to just relax and use lubrication. Another one put me through a battery of tests and told me all my levels were "within normal limits". A third doctor told me she was going to try to "open up a tight area" by burning my vaginal tissue with silver nitrate. Thinking it would help me, I let her do it on two occasions. It was all I could do to stop images of rape from filling my imagination. Needless to say, my symptoms did not improve. I read everything I could about vulvar pain, and tried simple home remedies like using very gentle detergents, modifying my diet, and wearing loose cotton clothing. No difference. I tried homeopathic remedies, reiki, and acupuncture. Still the same pain. I began to give up hope, and resigned myself to believing that this was just something I would have to live with for the rest of my life.
During this time, my motherly instinct grew so strong that it temporarily overcame the pain by sheer determination, and to my great relief it worked and we got pregnant quickly. We now have two beautiful daughters and are so grateful for them every day.
I remember learning that vulvodynia can sometimes improve after childbirth, but I actually had the opposite experience. In the past two years since my second daughter was born, the pain has increased. It also changed so that I now not only feel pain during contact, but also with normal activities like walking or taking a bath. The pain will flare up without warning and for an unpredictable amount of time. While not severe enough to impede my daily life, this new kind of pain did led me to seek naturopathic care, and I was so fortunate to find a wonderful, compassionate doctor who is working with me to reduce my pain. I also practice tai chi to help balance my body, mind and spirit.
I still have a glimmer of hope that I can live pain-free, but I must admit that the thought of pleasurable sex is just too far for me to even think about. Even if the physical pain went away, which I'm not convinced it will until we understand more about vulvodynia, I have so much psychological and emotional trauma to work through.
I am so grateful for my amazing husband who is supporting me through this. Vulvodynia really does affect both partners. We have been through the trenches together in so many ways, which has brought us as close as two people can be. We love working together, as scientists and entrepreneurs, and want to do whatever we can to help solve this puzzle and reduce suffering for me and millions of others in pain. Sharing my story is the first step. Founding CureTogether.com is the second step, bringing patients together to work towards making discoveries and curing vulvodynia and other chronic conditions for good.
Thanks for reading, and see you at http://www.curetogether.com!
Alexandra
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that sounds more like your sciatic nerve.
I have had an MRI and CT Scan and both showed negative. So it isn't my sciatic nerve. Plus I am seeing a pain doctor and a physical therapist.
I have similar symptoms, but with bachache, so I think it is coming from my back. I had bad groin pain and pains down my legs years ago (before I was diagnosed with vulvodynia) and MRI scan revealed nothing. So the only thing I can think of is that because all the nerves in the gential area, and in the abdomen, enter the spine close together, this might be type of referred pain.
My experience is similar to yours: started having problems at age 33 and went thru a gamut of doctors until a friends saw a description of my problem in a magazine at the beauty salon and called me with the number of the Vulvar Pain Foundation back in 1994. I started the low oxalate diet which helped a bit, added ox absorb which helped a bit more and then finally added estrogen cream and bio feedback and by 1997 I was feeling pretty good - no pain with sex. But with menopause the pain came back, so I added effexor xr and got more relief. I recently swapped out some effexor for cymbalta, which works with fewer side effects. So good luck with the estrogen cream. Most of the commercial preparations out there like estradiol contain propylene glycol which many women in our situation are sensitive to. If the cream burns, try having it specially compounded for you w/o propylene glycol and other additives. You should start feeling some relief in 1-3 weeks. I would also highly recommend biofeedback. This made a huge improvement in my ability to have sex w/o pain. Find a physical therapist who specializes in treating women with incontinence problems from childbirth, if you can't find anyone who specializes in vulvar pain. After two children and 10 years of pain you probably do have weak pelvic floor muscles and would benefit from biofeedback. With this condition it usually takes a combination of treatments to get the optimum amount of relief. After menopause I took HRT for 9 years and was recently diagnosed with breast cancer, so wondering if anyone out there has any experience of using tamoxifen with vulvodynia. Please share any info you have.
For the woman who is suffering from itching - it's a common symptom with vulvodynia. I had itching for years along with painful sex, burning, occasionally stabbing pain. It should go away with the low oxalate diet and calcium citrate. If it doesn't go away within a few days of faithfully following the low oxalate diet, then start considering other culprits like the estrogen cream you're using. It may contain something that you could find irritating.