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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Thank you for sharing such detail about your story so openly. Your descriptions of pain made me cringe remembering just how bad it was. I am relieved to see things are getting so much better for you.
There are so many of us out there, I hope more people will have the courage to open up and share to gain more knowledge about these secret conditions.
Thankfully, I also had an incredibly supportive boyfriend through my time with vulvodynia. I completely agree-- it affects both partners dramatically. But I will also say that I didn't appreciate people saying "your poor boyfriend" when I would dislose my inability to have sex because of my pain. What about us-- the direct sufferers? I felt like some people were too disconnected to understand.
What a great post--thank you for sharing such a personal story!
I have a question about your hormone levels, as I don't understand why a lab/doctor could not figure this out. Specifically, it sounded like you did get your hormone levels checked with one doctor, who (based on pre-deteremined laboratory measurement criteria) said that your "levels fall within normal range", but all other indicators of experience was saying otherwise (feeling less pain during pregnancy, for example). Your naturopath was able to figure out/assume that your hormone levels were low, without the lab results. Can you explain this more? Do the pre-determined levels need to be reconfigured, to help more women be properly diagnosed? What tools did your naturopath use to determine your low hormone levels (besides common sense?)
thanks!
Hi Alison,
Thanks for the question! My naturopath actually did retest my hormone levels, but took my whole picture of health into account when determining that they were too low, rather than just look at the absolute number (although even that was lower than when I had the first test done).
But the "normal range" is so vast, a range of hundreds of points, that it almost doesn't make sense to even have a range. It's hard to know where you fit and what is normal for your body when there is such an expanse of possible hormone levels.
It makes me wonder how much we really know about women's health and how much is still guesswork. Lots more research needs to be done!
Wishing you health,
Alexandra
I agree completelely Alexandra. I also watched a video on EmpowHer just yesterday addressing this exact concern about hormone range accuracy: http://www.empowher.com/share/hormones-and-endocrine-system/thyroid/vide...
Very interesting.
and everyone else who has shared their story.
I had never heard of Vulvodynia until it was first talked about on this website.
How strange that something that affects up to 10% of women in their lifetime remains so unknown by so many.
I hope this condition can be 'fixed' and better understood, for all the women who suffer from it. More and more, I realize how crucial hormones are and how they can affect us when they skid off the rails.
I'm glad you got to learn about vulvodynia here, and thank you so much for your positive comment! It's definitely something we all need to be aware of, especially as our hormone levels change as we age. I think vulvodynia is more common in menopausal women (rarer to find it in someone as young as me - 32). But there are ways to treat it, and with further research we can probably eliminate it completely. That would be wonderful for so many people in daily pain.
Thanks to EmpowHer too for spreading awareness about vulvodynia, and to everyone who reads this story!
Alexandra
Thank you for sharing your story. I suffer from vestibulitis and have been for the past 31 years. My biggest problem is with the itching. I am now on a low oxalate diet with calcium supplementation, probiotics for the gut etc. etc. I've tried so many things, I hope this is the last one I have to try. For the past month, I've been using as estrogen cream at night. Does anyone out there have a similar problem with itching. It's especially worse at night between 12 a.m. and 3 a.m. I would really appreciate any comments. Sleeping through the night, scratch-free is the biggest gift my body can have!
Thanks for listening.
In reply to the last comment by the woman who suffered with Vst for 31 years:
When you refer to the itching-- is that an effect of the estrogen cream or just in general? When I used estrogen cream-- YES -- it definitely felt itchy. I have heard of this side-effect/symptom before from estrogen cream. Otherwise my vulvodynia/vestibulitus(vst) never had any itchy symptoms.
I have recorded this "itchy" phenomenon under treatment reviews for vulvodynia here: http://www.curetogether.com/Vulvodynia/
You can see what other people say for various treatments as well. AND compare your symptoms, such as "itchy" versus all others to see what percentage of women experience the same thing.
Good luck,
Faf
Thank you for sharing your story. I have been suffering excruciating pain since about a year after my second child was born, but when I think back I really beleive that I have experienced this pain as far back as I can remember. I have never been able to wear a tampon and even though my friends in their young 20s were bragging about their sexual escapades, I did not find mine enjoying and could not be touched more than once a week... let alone multiple times a day as they were experiencing! I am 32 now, and finally have a name for my vulvodynia. I have tried all OTC and prescription yeast medications, terazol cream, testosterone cream, estrogen cream, both hormones at the same time, calendula, vitamins, among other treatments. I experienced about 6 weeks of relief when a doctor I was seeing took me off of the birth control pill, but the pain is back and somedays it is without any sexual contact or irritation. I am hoping that someday someone finds a treatment for the pain because it has become debilitating, both physically and emotionally. I ended a relationship because I thought I wasn't being fair to him, and I have now been single for 5 years and find myself very lonely and depressed. It is a miserable condition... I would pay top dollar for a treatment that worked!
Thanks for sharing your story. Does anyone have any other symptoms along with the vulvodynia? I have a strange itchy sensation under the skin that is mainly on my left side that goes from my abdomin down my leg. Makes me wonder if my nerves are going crazy.
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.
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.