New Member - My Battle with Vulvar Vestibulitis

[Guest guest]

Hi Vulvar Vain Ladies!My name is ; I live in Portland Oregon. Wanted to share my story. I apologize for it being so long....thank you in advance for reading it!:-)**************Feb 2005: Met a man I thought was The One. Great sex! Both of us have high sex drives.March 2005: Get the flu, take antiobiotics which leads to a yeast infection.March-Nov 2005: See my nurse practitioner at least once every month; am tested for yeast repeatedly and also for every STD imaginable. All results turn up negative. Meanwhile, my vulva – vestibule – 6'oclock spot and a little up the sides - is tearing, like paper-cuts, and ultimately what eventually called a fissure or ulcer is forming at the vestibule. I tear and bleed, and itch profusely. I learn I am now allergic to parabens (i.e. polyparaben, methylparaben – main ingredients in most lotions, creams, hair/skin products, even vaginal products!) I begin buying only organic, natural, non-paraben/chemically treated hair/skin products, menstrual pads, laundry soap, stop wearing tampons; I am gentle when washing my vulva and do not directly put soap anywhere down there but just rinse often throughout the day with warm water and an squirt bottle….I start using estrogen cream, lidocaine, clobetasol (steroid cream), and boric acid vaginal supplements (all this is stretched out during the period from March thru Nov). And, sex is restricted to about once every 3-4 weeks, trying to allow my vulva to heal….and when I think it has, I have sex, and it rips, tears and bleeds, and the cycle starts again of seeing the Dr and taking whatever treatment she gives me from the above-mentioned list.Nov 2005: The gynecologist sees me. He diagnoses me with Lichen Simplex Chronicus (LSC),and lightly mentions the word Vulvodynia. To determine this, he performs a Colposcopy(a medical diagnostic procedure to examine an illuminated, magnified view of the cervix and the tissues of the vagina and vulva). The extremely long needle that he inserts into my vulva in about 3 different places brings me to tears, along with the vinegar he puts all over my vulva to illuminate the damaged areas; it stings like I'm standing over a fire pit in Hell. I was crying. Then he takes a biopsy – clips off 5 sections in my vulva, of the inflamed, itchy, torn, painful, areas. The results are that I do not have cancer.But then I am told for LSC I need to use clobetasol and estrogen cream, and this may eventually go away. Guess what? IT DID!Dec 05-Jan 06: PAIN-FREE SEX!Feb 2006: Pain is back. Tearing, bleeding, but no itching. Something is different this time. I search online for someone in Portland Oregon who can help me: I find OHSU (Oregon Health & Sciences University) and Dr LeClair. I make an appointment but am not able to get in until April!Feb-April 2006: I suffer. Pointless to see the other doctors. I have sex once every two-three weeks. With pain, and lots of it. After the first 10 seconds of penetration, the screaming fire pain subsides (probably cuz my vulva goes into shock) and I can keep going with intercourse. I suffer after sex cuz I"m on fire and torn and bleeding). At this point, my boyfriend is concerned and worried and afraid of hurting me, and being very loving and supportive. Of course, some days I can't even have sex at all.April 2006: My boyfriend and I get a place together, a house for rent. I am diagnosed with Vulvar Vestibulitis. I am to come back in one month, after trying a therapy of estrogen cream-soaked cotton balls applied on my vulva every night.May 2006: I come to see the doctor the morning after having sex. She sees EXACTLY where I am damaged, and says WHOA! That I need surgery. I'd read online that there is something called Laser surgery. I'm way worse than that – I need actually surgery.July 5, 2006: I have a vestibulectomy. (Note: It is amazing how many more google searches can be found for this term, compared to back in 2005!!!). The damaged u-shaped section of my vulva, at the vestibule, 6'oclock spot, is removed and then skin from the sides are pulled over and stitched up to form new & replacement skin.July-Aug 2006: I have minimal bleeding, minimal recovery/healing pain. I miss a week of work, and then work another week part-time. Sitting isn't fun! Nor am I supposed to do much of it, in the beginning. The first 3 days after surgery, I was to lay in bed and only get up to pee. My boyfriend was still being lovey and support, at this point….Aug 2006: Dr has me start using a dilator (aka vibrator) to gently get the skin used to touch and penetration and pressure again. I'm supposed to do that every night for about 10-15 min. Ugh! I end up doing it about 4 times a week for about 5-10 min.Sept 2006: Have sex! Was very scared, but it didn't hurt! I cried! However, after a few more times of sex - about once every 4 days - I realize my "insides" hurt. Come to find out, it's my vaginal muscle band. So now it hurts upon penetration inside!Nov 2006: See Dr LeClair again, and she determines yes, the muscle band. She refers me for Biofeedback. I was like: what?!? This is an ongoing, never-ending ordeal.Dec 2006: I start up Biofeedback, with a really nice woman named Joanne at a clinic in SE Portland. For 10 weeks, twice a week, I learn how to relax and tighten my vaginal muscles and pelvic floor. For over a year, those muscles were automatically tensing up from the anticipated pain of penetration, so of course they were still doing it even though I no longer had that pain. Biofeedback consisted of massage, stretches, and - what I thought was cool - using a sensor, a little 3´´ or so nub thing that I put inside me - hooked up to a computer, which graphed the tenseness of my muscles! I practiced Kegel exercises and relaxation etc and watched the graph of my tenseness drop. That was the goal. And so finally I had pain-free sex again, after learning the techniques to relax and control my pelvic floor and vaginal muscles. !!!!!Late Winter 06/early Spring 07: Pain is back. Vestibule pain. Only in one spot, the vestibule. The sides healed completely from the surgery back in July; apparently the 6 o'clock skin was not strong enough. And my partner's penis is very, very big - which never helped from the get-go. I'm just devastated! But I see Dr LeClair, and I'm all for surgery again, this time for that specific spot. It will involve using the skin from above and below, this time. Perineum skin will be pulled up, and the bottom lip of my vagina will be pulled down…to form the new skin to cover this damn "ulcer" or "fissure" as the doctor referred to it as and make it go away. This is scheduled for July 5, 2007. And I'm ready and feeling encouraged. THIS will take care of it!!April 2007: My boyfriend, out of the blue, shattering what seemed to me (and everyone else who knew us) the most perfect relationship of two people in the world (us), says he's confused about "us" because his ex-girlfriend from when they were both 20 yrs old (and whom he dated for a whoppin 3 months) has tracked him down and they met after work and talked and he always considered her "The one who got away" (!!!!!) and she is now divorced and he doesn't know what to do, because he does have strong feelings for her, and he's now questioning his feelings for me, blah blah blah. After about 2 weeks of this, I say it's over. I'm moving out. I won't get into too much of the details, but we both did a lot of crying and debating over what to do….and I get him to admit what he is unhappy about in our relationship which OF COURSE includes our poor sex life. He said he'd been trying so hard to be supportive and accept having sex once a week and having oral sex but he couldn't do it anymore. I was devastated on all points.May 07: I move out and in with my cousin.July 2007: Have surgery. I have sex with my new "friend with benefits" the night before, so Dr LeClair can really see the damage. Surgery goes wonderfully well, says the doctor. Another doctor performed the surgery, with Dr LeClair looking on. She had not performed this specific type of vulvar surgery - with such little skin to work with - before. I'm in MASSIVE PAIN for the next 2-3 weeks. Mainly pain of the perineum area. I actually have to take Vicodin.July-Aug 07: I missed I think a total of 2 weeks of work, and work another 2 weeks part time. I stand the whole time, instead of sit like normal. (desk job - we raised my work station so I could stand!) I don't start driving again for almost 3 weeks after surgery. I don't have bleeding. One stitch comes out too soon, which set me back about 2-3 weeks worth of healing. :-( But Dr says it's normal and can be expected and everything looks great. Not to have sex (recommended!!) for an extra month - putting me towards mid-Nov.Sept 07: Dr's instructions, I start using my "dilator" (vibrator) to soften & loosen the new skin and help prevent scar tissue and get it accustomed to touch and pressure. By this point, the pain I feel is just the new nerve connections, not actual VVS pain. Dr says the skin looks great and there is nothing at this point I could do to damage myself so it's now ok to start exercising too.Oct 07: I move into my own apartment - yay! And start having SEX!!! (with my "friend with benefits") It does not hurt!!!! He is smaller than my ex-boyfriend, and I use lots of lube(I highly recommend Firefly http://www.organiclubricant.com/firefly_personal_lubricant_reviews.htm , formerly known as the brand name Nude) and it goes fantastically well. It turns into sex twice per weekend, and maybe once during the week. !!!!Nov 2007: Pain is back. Just a little; enough to let me know that I am not "cured". I have sex twice in 24 hrs and am stinging. But, no blood, and I don't see any skin tears.Nov 15: See Dr LeClair. She says my "vulva looks beautiful" !!! heehee. I see her again in Feb 2008. In the meantime, she recommends applying a cotton ball soaked in lidocaine ointment (how do you "soak" a cotton ball in lidocaine ointment exactly? ha ha) to my vestibule every nite at bedtime for 8 weeks. Some studies have shown that this helps (even cures) some women…of course, those were cases where the VVS symptoms were milder than mine, and they were also non-surgery cases too. Anyway, I haven't started this yet, but I will. She feels confident that my ulcer will not come back. That my skin will not be that bad again. I think I agree. But I am not 100% well; I'm not back to normal…back to what I was prior to March 2005. But I can't complain, really. I'm thankful to be where I'm at, vulvovaginally speaking. So……..this is me; I am this. This is my story.———–PS - I also have Interstitial Cystitis (IC). It really sucks. I've suffered from it since I was a child, and was never given a diagnosis. Doctors were stumped and figured either I was imagining it, or had some fluky thing wrong that I was causing. I was diagnosed finally in April of 2007. I saw a urologist after my own doctor didn't know what was going on. Oh please! I don't take doctor's answers of "I don't know" anymore. I seek out specialists!!! And then come to find out (on my own, doing online research) that IC and VVS often times go hand in hand. Oh joy. But I'm relieved to finally have a name for something I've been unhappily trying to live with for over 25 years!!!!!!PSS - more can be found at nvvo.wordpress.com, nvvo.net, and my personal blog: julieandhervagina@...

[Guest guest]

Wow what a story!

You know, physical therapists (good ones) can do more than just

biofeedback...my PT has eliminated my vestibular pain (without surgery)

and she works wonders with IC too. Just something to think about...may

or may not work for you but it's good to know the options!

Melinda

[Guest guest]

Wow what a story!

You know, physical therapists (good ones) can do more than just

biofeedback...my PT has eliminated my vestibular pain (without surgery)

and she works wonders with IC too. Just something to think about...may

or may not work for you but it's good to know the options!

Melinda

[Guest guest]

Thanks Melinda! That is awesome for you!The PT woman that I went to in early 07 is who I will start seeing again in Feb of this year.....and she was really good....I learned how to relax my pelvic floor muscles, thus relaxing the vaginal muscle band....but my problem is when my skin tears. It has only done it twice I think since I started back having sex (from July's surgery).....it's like my skin refuses to grow into healthy, tear-resistant tissue. Darn it! Pspanishmiss430 wrote: Wow what a

story! You know, physical therapists (good ones) can do more than just biofeedback...my PT has eliminated my vestibular pain (without surgery) and she works wonders with IC too. Just something to think about...may or may not work for you but it's good to know the options! Melinda

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks Melinda! That is awesome for you!The PT woman that I went to in early 07 is who I will start seeing again in Feb of this year.....and she was really good....I learned how to relax my pelvic floor muscles, thus relaxing the vaginal muscle band....but my problem is when my skin tears. It has only done it twice I think since I started back having sex (from July's surgery).....it's like my skin refuses to grow into healthy, tear-resistant tissue. Darn it! Pspanishmiss430 wrote: Wow what a

story! You know, physical therapists (good ones) can do more than just biofeedback...my PT has eliminated my vestibular pain (without surgery) and she works wonders with IC too. Just something to think about...may or may not work for you but it's good to know the options! Melinda

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks Melinda! That is awesome for you!The PT woman that I went to in early 07 is who I will start seeing again in Feb of this year.....and she was really good....I learned how to relax my pelvic floor muscles, thus relaxing the vaginal muscle band....but my problem is when my skin tears. It has only done it twice I think since I started back having sex (from July's surgery).....it's like my skin refuses to grow into healthy, tear-resistant tissue. Darn it! Pspanishmiss430 wrote: Wow what a

story! You know, physical therapists (good ones) can do more than just biofeedback...my PT has eliminated my vestibular pain (without surgery) and she works wonders with IC too. Just something to think about...may or may not work for you but it's good to know the options! Melinda

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Hi , welcome to the group. When my skin began tearing I started using Estrace topically. It healed up and hasn't torn since...hope you find relief soon. Hugs, Chelle

[Guest guest]

Hi , welcome to the group. When my skin began tearing I started using Estrace topically. It healed up and hasn't torn since...hope you find relief soon. Hugs, Chelle