Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Sarah’s Story September 11, 2007

My story begins during my six month of pregnancy with my son (who is now 5 1/2). But I now I think I can recall earlier symptoms. Anyway after the birth and at my six week check I noticed something wasn’t right. And sure enough, we tried and it hurts so bad I cried. Lube, wine, medical pot, lydocane- nothing worked. I was tested (like everyone) for stds, yeast, hpv, testicular cancer (just kidding just wanted to see if you are still awake). And like everyone of course all the test came back negative. For a long time there was no visible cause for anything to be wrong. So three years, a host of “treatments”, unsupportive doctors, and a slowly crumbling marriage later I finally get a diagnosis. Woo Hoo I have Vulvodynia! So I start researching and there is not anything that I can find. I stumbled upon an on-line support group but I need in-person support. i needed resources in my communnity for my family to turn to. But nothing was avaliable at the time.
We moved to start fresh in a bigger home. My symptoms seem to go into remission. Sex was never pain-free but at least we could have sex. So we had another baby (she’s 21 months old) and during her pregnancy my symptoms flared back up again. So I had a “Vestibulectomy” which is where they take a laser and remove the inflamed tissue and in theory scar tissue would grow back and then there would be no more pain. After six weeks of waiting, I go back in to see how everything looks. Well… My doc was unable to check the area because now it had been so traumatized by everything my pelvic floor had now spasmed. Which would explain why I would sit on the toilet and nothing would come out-even when I had to go. (And I have had UTI’s and this was nothing like that) This also occurred when I had to go poo as well. So I was sent to biofeed back therapy. My marriage at this point was over, in large part due to the VVS. But one of the last things he said to me was “even if your vagina worked I would still want to be with other people”. Burn. The other large part was his infidelity. Double burn.
So now I live at home with my parents and my two kids. The bio-feedback therapy really helped alot. I think I need to keep going back there in fact. The surgery was a total faliure. I did not have a single tiny bit of relief. On a total lark my friend Emily was over and I was trying to tell her about the divorce without talking about my vagina issues. Suddenly I thought ‘aw fuck it’ and I told her everything. Then she said I know another friend of mine who has that. I laughed out loud. ‘No no that’s not possible’ I thought. Well that person turned out to be Katie S. And from the first moment that we met each other it felt like everythling in my life had been leading me here. Because as soon as we did meet we all clicked and the NVVO was born. Katie E’s husband named us the “Vagina Girls” and we have been thus ever since.
It is so important for all of our recovery is to connect with each other. We are not alone. Here are some statistics: the National Institute of Health says that one in six women have VVS- thats thirteen million women. October 24th is National Vulvodynia Awareness Day.
Be pro-active in your health care, no one else will. Be compassionate to yourself. Hang out here, take your shoes off and tell us about your Vagina.
Peace out,

Sarah

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9 Responses to “Sarah’s Story”

  1. julieannpdx Says:

    Sarah! Beautifully, heartbreakingly, well-said!!!!!!!!!! 🙂

  2. Bobbi Says:

    I have been dealing with this for 2 years now and I just want to give up. I’m tired of crying. I’m tired of hurting. I’m tired of feeling broken. I miss sex with my husband and I miss my favorite jeans. If I didn’t have a five year old, I would just off myself.

    My husband says I read too much on the internet and all the people who get better aren’t blogging about it, they’re out living their lives, but I just want to know if I’ll ever get better. I feel so sad all the time. I just want some joy in my life again. I really need some help and I don’t know where to go.

    • Kelleigh Says:

      I don’t know when you posted Bobbi, but I found two things which greatly help. One is taking a 10 mg. pregnenolone supplement every day. Cheap from swansonvitamins.com. As well, when I get an attack from stress or too much wine or chocolate, I use Swansonvitamin’s progesterone cream made with wild yams. Use it morning and before bed, just a small amount on the inside of the vaginal lips. After a few days the attack subsides. It might help you

  3. Kel Nelson Says:

    Does anyone reply? Are there any good surgeons who know what they’re doing? Or do we spend the rest of our lives like this? What a horrible curse…I love my husband and I love lovemaking and now it’s over…is there nothing?

  4. Ashton Conwell Says:

    Is there anyone on this website who lives in Arizona???? If so, I would love to start a support group. I need help so badly…

  5. Mommusic Says:

    Hi Everyone,
    I’m here and trying to get my story out when website at a time. I am 28 and suffered from severe VVS for 10 years (since the day I became sexually active). Sex was the worst experience of my life- the burning, tearing, intense fire upon entry! Holy crap! I thought I would die! It almost broke up my boyfriend (now husband) and I many times. I had been through every single treatment you can imagine with VVS specialists in Philadelphia. You name it, I’ve done it. I was scheduled for the surgery in 2008 but found out I was pregnant and postponed (the one time I endured sex in a year got us pregnant). When my son was 9 months, I decided to switch our lifestyle to all-natural products. And I mean EVERYTHING. We changed soaps, shampoos, conditioners, food, toothpaste, laundry, etc. My husband changed all of his products, too. We switched entirely for the purpose of living healthier for our son- VVS never crossed my mind. One day, we had sex and it didn’t hurt. It’s been over a year now and I have been 100% pain free ever since. Sex is now a positive thing in my life. I never thought it would have turned out to be a chemical “allergy” of some sort. I had changed to the standard “Dove Sensitive Body Wash” and the like, blah blah blah, years earlier but I’ve learned now that those names mean absolutely NOTHING. They are still commercial products full of chemicals- same with laundry detergents. So, I am a success story out there on the internet and I’m trying to spread the word! Don’t give up! Good luck!

    • tiffany Says:

      Thank you for posting this. It’s the first thing I’ve read in a long time that gives me some hope. I hear you about the Dove soap, I’ve had the exact same experience…all that “hypoallergenic” stuff is a load of BS. About a year ago I switched to taking sponge bathes in distilled water, and that helps some, but I want it gone; I refuse to live the rest of my life this way. Another thing I’ve found that kind of helps is meditation. I’ve noticed when I’m really stressed, the pain really ramps up. Anyway…I’m going to try switching to natural products as you suggest. If it works, I swear to God I will post on every website I can find. If anybody finds something, anything that works, it needs to go viral.

  6. marta Says:

    Hi, sorry but my inglish is very bad…

    Por lo tanto escribiré en castellano, soy de barcelona y aquí no tienen ni idea de nada de esto, llevo casi 4 años para un posible diagnóstico, me sucedió todo tras el parto!

    Besos…kissss

  7. Marie Venable Says:

    Hi Everyone:

    Well I guess I am not alone. After reading all the information, I am not sure where to turn. I have IC and VV, it is very frustrating. I wish there was a path to take for some kind of relief.


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