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

Katie S’s Story September 11, 2007

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10 Responses to “Katie S’s Story”

  1. katie s Says:

    Hi, it’s me. I don’t know how to post propperly yet, so I’m going to try this.
    VULVAR VESTIBULITIS SUCKS! Ha!
    Like Sarah said, I’ve got VVS, but VVS doesn’t have me.
    I want to take over the world and I want to go to sleep.
    My boyfriend comes back from New York tonight, so I have to stay up till 11 at least. Heck.
    Umm.
    I just got a colposcopy and biopsy for hpv, which i have just been diagnosed with. I hope to never get a cervical biopsy again!
    SUCK! Ouch. That was at like 4 pm, it’s 9 pm, and my vagina still hurts. And I’m having that cervical irritation cramping thing too.
    HECK!
    Ok, off I go to walgreens to get my liquid lidocaine.
    Wheeeee.
    Love Katie S.

  2. katie s Says:

    Me again!!!!!!!
    What’s up me! Yeah! Hi.
    I have to find a job or something.
    Oh boy! Money Money Money.
    My vagina is ok today.
    And I even had sex yesterday and I am drinking coffee in the evening. Both of these things can make the vagina sad. But I am ok, which is magical. Notice how I said ok. Which is not “pain free”, but not severe or even warranting of ice pack or lidocaine application. Just the dull annoying ache. Which is muscular and also skin stingy feeling.
    I feel so tired!
    Ok. I am going to go read about the vaginas of my friends.
    Love, Katie

  3. Oh! Can I post now? I made an account. It’s me, Katie.
    Ummmmm. Does it work?

  4. katie s Says:

    I LOVE MY VAGINA!!!!!!!!
    AND I LOVE YOURS TOO!
    HOORAY!!!!!!!!!!

  5. katie s Says:

    So, still having the pain. It’s been 10 years. What a trip!
    I cannot believe my last post on here was a year ago.
    Whoops!
    But it’s all going to be ok someday. In the crotch.
    And I am so glad I have the support of my friends and family!
    Also, really, this support community is one of the best things I have ever had happen to me.
    We (a few of us) just met up today, and it made me feel better. It always does. It’s just so much fun to hang out with friends, and friends who actually know what this feels like are really helpful.
    So, friends, thank you for being so wonderful.
    Love, Katie

  6. vvsnkaties Says:

    Well, yes.
    It’s still has been 10 years, and I still don’t really know how to post.
    But I will find out! It will work!
    And by the way I will try to import the stories off the old website we once had, when we had money and time to do that.
    That’s be a great resource.
    But for now I am going to take a nap.
    Love,
    Katie

  7. Rebecca Says:

    Hi Katie-
    I have been going through this crazy broken vagina stuff for about a year now. A year ago, I noticed blood on my underwear after having been manually stimulated by a guy. I ignored it thinking it was a cut or something. Then it happened again, I went to the gyno, they said I just needed lube. Then I went to Israel to study for my first year of grad school, and the issue continued spotting or bleeding after any kind of sexual activity involving my vagina, itchiness constantly, a bright red vulvar area, and a kind of burning sensationt too sometimes. Went to a women’s health specialist physician in Israel, she initially thought it was my birth control pills, she took me off of bc and prescribed estrogen cream which seemd to irritate me worse, and actually create internal inflammation symptoms. She also tested me for yeast, gonorrhea, chlamydia, trichamona, all negative. After the estrogen didn’t work, I saw a gyno colleague of hers who thought I had Desquamative Inflammatory Vaginitis, she prescribed Clindamyacin, that seemed to help somewhat, but not with the vulvar symptoms. Then the doc prescribed hydrocortisone cream which again made it feel slightly better but didn’t help with the color of the vulva, tearing, etc. I went home to Chicago for a break in school and saw a dermatologist, and 2 gynecologists. I ended up having a punch biopsy of the vulvar area, in which they found hpv, the low risk kind(meaning the virus that causes genital warts, which I don’t yet have, at least not visible ones), and they also did all the other STD tests imaginable which thankfully were all negative. The gyno in Chicago wanted me to try clobetasol, which I have been using for a couple weeks but doesn’t seem to really be helping. The HPV from what I’ve learned doesnt cause symptoms like this, it would just be causing warts. Also, unlike everyone else on this blog, I haven’t been experiencing pain but the tearing, itching, stinging stuff. Any ideas, support, etc. would be greatly appreciated, as this has really made me depressed and made me think that I will never have a normal relationship or sex life ever again. 😦

  8. katie s Says:

    hi Rebecca,
    I’d check out Julie’s section… she had some more of the tearing and stinging a while back. but she actually got the surgery and it worked!
    i wish i had some good advise about this.
    mostly all that has helped me is community and knowing that i am in a loving and caring situation with all aspects of my life.
    friends are the best thing for this. i also have a wonderfully supportive boyfriend who is awesome.
    where do you live? there may be a clinic that other women who have this condition – there may be a way to start or join a support group in your area.
    i have had this condition for so long, and i really have not had any relief from anything. no treatment has helped me. i have tried pretty much all of them. but not for a while. between 5 and 8 years ago i was on all sorts of medications, had 3 laser surgeries, tried alternatives to western medicine, all sorts of stuff. but i kind of gave up.
    i eat a modified low oxalate diet, drink plenty of water, and stretch regularly. that seems to help keep the big flareups at a minimum. but i still hurt every day.
    so i am not the best person to ask in this regard. at all.
    honestly just being able to be relaxed and safe and knowing that i am in the midst of a supportive and understanding community is the best thing that i’ve found to alleviate this condition.
    i wish you the best of luck finding healing and the most love and community ever!
    best,
    katie

  9. Rebecca Says:

    Hi Katie-
    Thanks so much for the response. I’m so sorry it has taken me so very long to respond to your response. I actually didn’t know you had responded. Anyway, was having a bad night, and checked this website again. I really appreciate your words of support. I guess I’m having a lot of trouble with acceptance of this condition. I have been to about a billion specialists. They have all diagnosed me with a minor case of DIV-desquamative inflammatory vaginits, as well as vulvar vestibulitis. No one knows the cause. I have been tested and re tested for stds, nothing thank G-d has come up, I have also been biopsied twice, both times benign, also thank G-d. However, the treatment approaches I have gotten from all the docs is essentially, estrogen cream and hydrocortisone cream. I am very reluctant to consider surgery as I have heard although it works for some it can make other people’s symptoms much worse. I feel like less of a woman, and I am always questioning myself, like is this something I caused, I brought on myself. I guess I could just really use a mental adjustment. I really want to be able to be in a “normal” sexual relationship with a guy, and I”m 26 so I’m not really just looking for casual anymore, I would like to be able to establish a serious relationship at some point, and I just feel like it is next to impossible to explain this to a potential mate? Any words of wisdom on this front? Oy. I have read Julie’s story, I’m not exactly sure if the tearing I am experiencing with sex or digital stimulation is exactly the same as Julie’s or not. Have you ever heard from other women experiencing tearing with VVS? Many thanks for any ideas and or words of wisdom. I live in New York City now, I moved from Chicago in August for grad school. I would love to start a VVS group here, I think that would really help myself and others who are dealing with similar issues. If there are other women you know of in my area let me know I’d love to help facilitate. Thanks again, wishing you a 2010 filled with vulvovaginal health!
    Rebecca.

  10. JJ Says:

    I too have vulvar vestibulitis. I have never known anyone else who has it. I am 42 and have suffered with this since I was 17. I have had surgeries, numerous medications, and different diets. Nothing has permanently helped. Frustrating but I have a wonderful, supportive fiance. I am blessed. Looking for a doctor in the ST Louis area. Any recommendations?


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