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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Tamoxifen and vulvar pain: I was recently diagnosed with early breast cancer after taking HRT for 10 years after menopause, mainly to manage vulvodynia symptoms. As a preventative, my oncologist wants me to use tamoxifen for 5 years. Tamoxifen blocks estrogen in the body, so reduces the risk of cancer returning. Does anyone have any experience of managing vulvodynia while taking tamoxifen. i'd be grateful to learn if it's making you worse and how you're coping.
I was diagnosed with vulvodynia (I'd been suffering for more than a year) just one day after I was diagnosed with breast cancer and put on tamoxifen. Gynae gave me Trimovate cream for vulvodynia, which really does help (it's a combination of steroid, antibiotic and anti-fugal). She also told me that vulvodynia normally gets BETTER after menopause.
I don't think the Tamoxifen has made any difference to the vulvodynia. Only thing it has done is increase vaginal discharge and give me some pain in the vagina. I used to get heavy vaginal discharge in the second half of the month when I was seeing my periods and was told this was due to the fact I made too much progesterone. I therefore assume that the discharge I am experiencing now is hormonal and something to do with the Tamoxifen.
my vulvodynia began on july 3rd, 2007. Mine has actually been diagonosed as clitorodynia. After seeing three different doctors, two of which were gyno's and one doctor of internal medicine, i was acurately diagnosed by a specialist i found thru the National Vulvodynia Assoc (NVA) who found that I have a tear in my clitoris. For three months I have been using a estrogen/lidocaine cream made by a compounding pharmacist. It was a little irritating for about 48 hours then has brought some relief. Still not having sex as we are hoping the tear will heal. I am doubtful since it has been 19 months since the injury occurred, but will try anything to get my life back. Psychologically just having someone confirm what I had been trying to describe to the other doctors and my husband was wonderful. I am still in the middle of my treatment. I am also on 50mg of amitriptyline to block the pain receptors, but if i wear the wrong thing or sit wrong, wipe too hard, etc. I feel irritation. My husband too has been very suportive, thank goodness, but as someone in an earlier post mentioned you do begin to feel broken or defective and just plain tired of living with this condition.