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

Julie’s Story September 11, 2007

Hello my VVS friends!

Thought I’d give a brief rundown of my situation….

 

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 Catherine 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:  www.hands-onhealthcare.com. 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!!!!!!

NOTE: Read more about me and my vagina on my PERSONAL blog: (appropriately named) julieandhervagina.wordpress.com! I just started it; keep checking back cuz that is where I will post my personal dealings with VVS and all things related to it. Hopefully it won’t offend or shock or disturb anyone – namely, family or friends or coworkers??!! Eesh! Thanks!!!! 🙂

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20 Responses to “Julie’s Story”

  1. Lyndsay Says:

    Hey Julie, I was wondering about the surgery. I’ve been dealing with VVS for for so long I feel like it’s my only option now. Did it work? What was your healing time? How long were you in the hospital and what does it cost? I’ve read about it on some websites but I’m reading a lot of mixed information. I’d really appreciate some info. Thanks so much!!!! Lyndsay

  2. julieannpdx Says:

    Lyndsay!
    Thanks SO MUCH for contacting me!! I would love to know more about you. You should join our Yahoo group, NVVO.
    The cost for my surgery was between five and six thousand dollars!! My insurance paid for all but $800 for the first one, and all but $900 for the second one. I’m making payments, on both!
    First of all, you need to make sure you have – or find – a doctor that KNOWS about VVS. That is the #1 concern – and issue – and problem!!!! You need a doctor that knows about VVS, and has performed the surgery or can refer you to someone who does.
    It IS a medical condition that should be covered by insurance. I had a vestibulectomy the first time, and perineoplasty the second. Well, I use those terms loosely; I guess I didn’t have the specific definition of either of those surgeries; vulvar surgery is usually what I call it.
    One MAJOR hint: when you go to a vulvovaginal specialist, have sex (or try) the night before! It will help immensely in diagnosing your condition and determining your treatment. DO NOT settle for a doctor that doesn’t know, or isn’t sure, or gives you the same stupid diagnoses of yeast or bacterial infections and gives you yet another antibiotic.

    Back to the surgery: the first time, to replace the torn skin around the vestibule – papercut type tears along the sides up from the vestibule and then a fissure at the six o’clock spot, Dr LeClair pulled (for a lack of better word) skin from the sides and stitched it together to form new skin in those damaged areas. It was the shape of an upside-down goal post, as she described it (and drew for me). This surgery kept me off work for a week, and then back to work part-time for another week. I didn’t bleed at all after the surgery! The pain wasn’t even bad enough for me to take any hard drugs like my Vicodin prescription!
    I had to wait a month (meanwhile, saw the Dr two more times) before using my fingers and eventually a ‘dilator’ (aka vibrator) 15 min a day to make the new skin more pliable and used to touch again and stretch a little bit. I was to wait 3 months before having sex; however, I woefully admit I did not wait but 2 months!! I had a wonderful, supportive (at the time) boyfriend whom I’d just started renting a house with and we were happily in love, and we held off as long as we could. I had PAIN-FREE sex!!! I cried, I was so happy. Unfortunately, after about 2 months, the pain was back but only in the six o’clock spot. The sides had healed at least; yay! And, slight bleeding was happening again at that spot. So, after a couple more appointments, I had surgery again for that spot (July of 07). I had a fissure, an ulcer….the Dr had never seen such a severe case. Probably cuz I wasn’t giving up sex; I was still trying to have it two times a week but with lots of lidocaine to numb it somewhat and then just deal with the pain afterwards with more lidocaine and warm washcloths!!!
    So, this time the surgery caused a LOT of pain, due to the perineum skin being involved; I missed 2 weeks of work and then did 2 weeks of part-time. I had to use 2 prescriptions of Vicodin. However, the reason is because this time the skin from my perineum was pulled up, and the lower “lip” of my vagina was pulled down…these were stitched together to form new skin where the fissure had been. That was indeed a very painful episode.
    The first week of October, I tried sex again! (meanwhile my boyfriend and I broke up…that’s a whole other story but is definitely related to me having VVS) I now have sex probably 2-3 times a week and I have just slight pain – I think it’s just the skin getting accustomed to all that friction and pressure. I don’t think I will ever be pain-free; I really don’t remember what that was like.
    I see the Dr on Nov 15 and I will have sex the night before, so she can fully examine my vulva and see if there is any damage still. It’s hard for me to see myself with a small mirror and poor lighting!! But in the stirrups, the Dr gives me a mirror and I can see what she is seeing, and pointing to, and talking about. It’s great!
    Ok………that is my story in a nutshell…there is a LOT more I could say, and I will!! Definitely!!! Please keep in touch! I will email you directly, from my Yahoo email, so you can contact me that way if you’d like. Whichever is more comfortable for you.
    🙂
    Best of luck to you, my VVS friend!

    Julie

  3. Lyndsay Says:

    Hey Julie, First of all.. thanks so much for all the info! I’ve never actually talked to anyone else who has VVS, only doctors who all have a different opinion. As to answer your questions in the email… I’m 25, I live live in Miami, and no I don’t have any kids. I was diagnosed with VVS when I was 20 . I have the typical story of years of pain and one misdiagnoses after another. I must have seen 7 different gynos and was tested and tested for infections and STDs and I even had an ultrasound once. I finally went into my Dr and basically broke down and freaked out on her. I was like, you’re not listening to me! I’m in pain. I’ve already been tested for STDs 20 times and I don’t have them. I finally got a referral for a Dr. in Philadelphia (where I lived at the time) named Susan Kellog who specializes in painful sex. She took one look at me and was like your glands are all inflamed and you definitely have VVS. She gave me 3 options… Steroid shots, surgery, or applying capsaicin cream. I picked the cream because the others scared me too much. I don’t know if you ever tried it. It basically feels like you’re putting lime juice on a open cut except it’s on your vagina instead. Although it sucked, it did really help me. At the time I was not allowed to have sex but I was single so it didn’t matter. The pain was supposed to stay away forever after using the cream for a year. It was gone for a long time, but lately it has flared back up really bad. I live with a very understanding boyfriend of 2 1/2 years. We have sex about once a week but it always hurts. I’m just so tired of dealing with it. I haven’t seen a specialist since moving to Miami a year and 1/2 ago. It seems that in the past couple of years there has been a lot more info available about the condition but it’s still really frustrating when I read the success rates of different treatments. I’ve tried estrogen cream, lidocaine, and some of the others, but I really want a permanent fix. Nothing seems to really work. I’ve heard that the surgery doesn’t have the greatest success rate and it’s hard for me to take off work for more than a week. I am in the process of getting new health insurance but I’m not sure the surgery will be covered bc it is a preexisting condition, but I think I want to give it a shot either way. What did your doctor tell you was the success rate of the surgery? How old are you and what else did you try before opting for surgery? Thanks again for the surgery info.. It’s good to finally talk to someone else who has it. When I try to tell my girlfriends about it they’re like, I’ve never even heard of that.

  4. julieannpdx Says:

    Hi Lyndsay –

    Well after 2 surgeries I must say I am way better than what I was, but I am not 100%. ‘sigh’
    Being 36, I’m so far the oldest VVS sufferer I know…and the one who has been suffering for the least amount of time!!!! March 05 I first starting seeking help and in Nov that year was diagnosed with Lichen Simplex Chronicus which went away after diagnosis which is really weird…and the Dr did mention Vulvodynia…but altho the itching was gone, the pain and tearing came back so when I saw a specialist in April? 06 it was definitely now VVS and no trace of LSC !!! Crazy.
    Yes NO ONE has ever heard of this, and none seem to really understand what the hell I’m telling them. Jeez. I usually tell them to Google it, or now check out our NVVO sites. Lidocaine ointment still works well for me before and after sex….altho technically I haven’t had to use it since my last surgery in July this year….
    That is WONDERFUL that you have a supportive and loving boyfriend!! Not to be a Downer Debbie, but my boyfriend who had to deal with my VVS since it first started, finally told me he can’t be supportive of me anymore altho he did fool me for 2 years. We broke up 6 weeks before my last surgery. And he was wanting to get back with an ex from 15 yrs ago that he’d dated for only 3 months….but come to find out my VVS DEFINITELY was a BIG factor on our relationship. And here I thought he was The One. ‘sigh’
    How are you feeling during different times of the month? Are you able to reach orgasm without vaginal intercourse? Thank God I can! My pain isn’t constant, every day, every hour, which is another thing I’m thankful for. I’m trying to cut back on my recent-increase of sugar and caffeine because I would imagine any crappy stuff I put in my body can’t be helping me heal!!!!
    Hope to hear from you soon.
    xoxo
    Julie

  5. Lyndsay Says:

    Hey Julie,
    I’ve been feelin pretty crappy lately. I went 3 weeks without having sex with my boyfriend (the longest we’ve ever gone) and it’s really stressin me out. It’s like every time he goes to touch me I think it’s going to hurt and I worry about it so much that I can’t allow myself to get turned on and in return, it does hurt. Does that make any sense? If I could just chill out and not worry so much, I know it wouldn’t be such a problem. Did this ever happen to you?
    When you asked how I am feeling during different times of the month; I didn’t know I was supposed to feel different, I think it’s always the same. I definitely have to stop stressing out about everything though. It’s really affecting my relationship now. I’m supposed to be in my sexual prime and I’m never turned on now (ever). I still want to see a specialist but I’m still in the process of getting health insurance. I signed up for one and they basically said they weren’t covering anything associated with the vagina. Obviously that’s not good so I had to drop it.
    I’ve read that calcium citrate tablets, 3 times a day help. Have you ever tried them? I don’t know if I can take anything 3 times a day religiously. How have you been? Any change since the last time you wrote? That’s so great that you don’t have to use lidocaine anymore, I feel like it’s such a mood killer. I hope you’re doing well. You inspire me not to loose faith that I will be normal again. 🙂

  6. Jody Says:

    Julie,
    Thanks you for your honesty! I read your article and thought I was reading my own story! My details are a bit different in that I can’t talk my doctor into surgery (I found your story while searching for a vestibulitis specialist who I could talk to about it) and she keeps recommending applying creams. I am 41 and have been dealing with this since I was about 30…luckily (I say this toungue in cheek) my husband is on antidepressants which kill his libido so we aren’t struggling so much with the problem of no sex. I say that very lightly knowing that all it could take is him running into an old flame and it could all be over. Anyway, I just want to let you know how nice it is to hear someone else’s story, I have felt VERY alone in my journey with this.

  7. julieannpdx Says:

    Hi Jody!

    Thank you so much for reading and writing!!! And just so you know, I am emailing you back at your personal email. That might be easier.
    🙂

    Julie

  8. marisa Says:

    Hi
    I have been having trouble with itching around my vulva off and on for months but lately it has gotten worse and I am currently in agony from scatching. I don’t have crabs and I am trying a yeast infection medication, but I’ve never had an itch like this with a yeast infection. Does this sound like your symptoms?

  9. rachael Says:

    Thank you so much for sharing. I am glad to know I am not alone, your story sounds so much like mine! I took antibiotics too and then I first started experiencing VV! I was diagnosed with IC and VV this year, although the VV came first. Doctors here in Oahu do not believe in treating VV, and think it will ‘go away on its own.’
    Thank god I am seeing a specialist in San Francisco soon!
    I am doing biofeedback, but it is not helping too much 😦

    xxrach

  10. rebecca Says:

    Hi Julie-
    I’m so sorry for all the pain you have suffered, but I am glad you have a handle on your vag problems, it gives me some hope that maybe I will get a handle on mine too. My issues started in March of 2008, when I had been hooking up with a friend with benefits of mine, and immediately afterwards I noticed blood on my underwear. As this was not my period, I was a little concerned and made an appointment with my gyno. She ran STD tests, as well as a yeast culture, and checked for infection, and nothing came up. Her response was that I should try some lube. As I wasn’t really satisifed with this answer, and even the slightest trauma of being examined by a speculum caused light bleeding or spotting, I went to a women’s internist who at first thought my vulva swelling, and frail vaginal tissue(atrophic vaginal tissue) was due to my being on the birth control pill for 5 years. She had me stop the pill and see if it went away. Well, it didn’t go away, and the estrogen cream she prescribed for me to help beef up the vaginal cells so to speak irritated my vagina further. Then, the internist sent me to a vulvar specialist who examined my vagina and took a sample of the secretions and looked at it under a microscope. She diagnosed me with: Desquamative Inflammatory Vaginitis based on the presence of a lot of white blood cells, and many immature vaginal cells, with a lack of normal bacteria that one would typically find in the vagina. She had me use clindamyacin an anti-inflammant antibiotic for two weeks, inserted vaginally. However, when I went back to have it checked, while somewhat improved, it was not completely improved. The white blood cells were now gone, but still some immature vaginal cells. My doctor then prescribed a suppository estrogen to use 2xs per week as well as more clindamyacin 2xs per week for two weeks, after which I am to go back and have it all checked out again. I have been so stressed out about this, the spotting after sex, the inflamed vagina, the fear that I will never have a normal sex life again has really been paralyzing. I am 25, and just started graduate school. I am actually abroad in Israel for the year, so this only complicates an already stressful situation. I would love to hear any advice or thoughts you have. The tearing you experienced seemed similar to my initial symptoms. I know DIV is not the exact same thing as VV, but I can’t help but wonder if they are all part of a similar category of issues. Many thanks for any advice or reassurance you can give me!
    Rebecca.

  11. Emma Says:

    Just thought I’d drop you a line and tell you how much I think y’all rock. Reading your stories was the first time I’ve actually heard from real people with experiences with VVS–with candor, rage, irony and humor to boot. Cool-sounding people who use words like “friends with benefits”–not to be found in any scientific article! Your writings made me feel like a person again. Thank you so much and keep up the awesome work!

    I have a question for you, Julie: how have things been going for you in the past few months? Are you still pretty happy with the results of your surgery?

    I’m 23 years old, and I’ve been dealing with VVS for about three years. Right now I’m considering surgery after seeing a specialist (finally!) who actually treated me respectfully and who I’m coming to trust. I’ve run the gamut of treatments (yeast meds and home remedies, PT, biofeedback, steroid cream, low oxalate diet, acupuncture, etc). This has been a loooong painful journey. (But I don’t have to tell you guys that.)

    Keep on advocating for yourselves and loving yourselves!

    Let’s also fight for the social change necessary for us all to have access to the healing we need–affordable health care for all, more and better research on women’s health, respectful providers who aren’t sexist or racist or homophobic or transphobic!

    vulva love from the windy city!

  12. katie s Says:

    yay!
    thanks for your wonderful comments.
    you totally rock!
    best,
    katie s.

  13. julieannpdx Says:

    Hi ladies!

    Sorry I take so damn long to reply!
    I have depression (over 20 yrs!) and even tho I’m on meds, am having problems lately. Got a new therapist and I think things will start looking up.

    After my 2nd surgery, I waited 2 months before trying sex, and the guy I was seeing was very careful with penetration. I did have one or two times of bleeding and it scared the heck out of me, but I’d wait a week or so then try sex again. Then I after I ended my “thing” with him, I had sex probably once a month for about a year!! I was single and had a good friend who also was an occasional “partner”. I think I had bleeding once from him. I think that was really important to have that long of a time without sex and being single without the pressure of a boyfriend, ya know?
    So then once I got with my boyfriend that I have now, I have NEVER had bleeding! It got to where I don’t even need lube every time!!! He is so gentle and slow – even before I told him about my condition! (I told him on the 3rd time). I enjoy eduating people about this because so many women have these problems or this condition without talking about it or understanding or just accepting their doctors’ misdiagnoses!
    I use only organic or natural products that have NO parabens (methylparaben, polyparaben, etc) which means soap, shampoo, conditioner, lotion, feminine pads, laundry detergent and dryer sheets…and really read ingredients of all food and drinks I consume. I think it has really made a big difference. I take natural (vegetarian-based) multi-vitamins. I learned breathing techniquest from biofeedback therapy to help me relax my pelvic floor. I exercise regularly (but struggle with eating too much!!!).
    Make sure the estrogen cream is natural! Not premarin – made from pregnant horses!! Seriously! I got mine from a compounding pharmacy. Boric acid capsules every few days inserted vaginally are supposed to help with balancing the vaginal pH.
    Does any of this help???
    I hope so.

    And get a differnt doctor! It took the third doctor really enlighten me. Oregon Health Sciences Univ here in Portland Oregon has one of the best Vulvovaginal clinics in the world. Thank God it’s in my city!

    We highly recommend joining some groups (online) and ask for assistance from them. You’ll find hundreds of women all over the world who have this condition!!!

    Let me know how you are doing!!

    Julie

  14. miriam Says:

    Hi Julie,

    Thanks for publishing your story! I’m sooo sorry for all of you here going through this, but I’m happy that we’re not alone in our struggles. Anyway I was wondering about your surgery. I am contemplating getting a vestibulectomy with vaginal advancement from Dr. Goldstein in DC. Did you have the vaginal advancement on the whole vestibule or only at the six o’clock position. Also, I have pain not only with penetration but with any kind of provocation- sitting, wearing jeans, riding a bike etc. I am diagnosed with VV by Goldstein and am a candidate for surgery. I’m just concerned since my pain is not only with sex. I almost don’t care about that part. I just want to be able live a normal life otherwise. Sick of wearing skirts and dresses all the time!

    Well, thanks for any info you may have!!

    Miriam miriamcdb at yahoo dot com… I’d welcome any emails as I am getting quite nervous about the surgery. 😦

  15. K3B Says:

    Julie!
    I am so thankful for your honest and helpful responses! I Too am in Portland, Or. I would love to talk with you directly and hear more about your experience. I am similar to Lindsey in that I do not talk about it to many people. I am a 40 year old woman who has now had Vulvar pain for the last three years. I have just had my first appointment with Joanne (the PT you recommended) and would love to talk with you about more referrals you have.
    Please e-mail me if you feel comfortable.
    K3B

    • jul Says:

      I’m so sorry for not getting back to you sooner! I just emailed you about a local (Portland, Oregon) meet-up we are having for several of us on Jan 29. One or two new girls will be there, too! If anyone else is local, please post or email me/us about meeting with us if you’d like! I’m sorry I’ve been so bad with replying to each comment and story. My heart goes out to each one of you. This is soooo tough, I know. We’re all so happy to share our stories and connect with all of you!! Having these connections help deal a little bit better, and it’s empowering on some levels.

      Love & best health wishes —
      Julie

  16. AW Says:

    This is a great site. I have been having these problems since Jan 2008. Tried PT and amitrptyline cream. The pain ebs and flows but I am not able to really get turned on. Right now I am experiencing the worst itchy and pain in the front at the top – not my actual vagina! I am really grateful to have good insurance. Never considered surgery before. Looking for a specialist in Chicago.

    • Emma Says:

      Hi AW,

      I also experienced pain/itchiness farther “in front” of my vulva, in my labia near the clitoris, in addition to the sharp pain at the vaginal opening (vestibular pain). It sucks!

      In my observation, I get the itchiness/pain in front when my pelvic floor muscles get tense (often in response to the vestibular pain). I’ve found that three things help me with that kind of pain:

      1) physical therapy. My physical therapist worked with me to teach me how to consciously relax my pelvic floor using kegel excercises and other stretches, and to release tension using my finger or a dilator. I went to a lot of physical therapy over the years, and I still go occasionally, but I can now pretty much do on my own what my physical therapist does.

      2) taking nortriptilene orally (basically the same as amiltriptilene). This had the most dramatic effect on the front itchiness/pain, and I still take it everyday.

      3) using a topical lidocaine gel on the itchy area in front. This helps break the cycle of pain and tension once I have a flare up.

      The single most helpful thing for my vestibular pain was surgery–a vulvar vestibulectomy. I still get that pain/itchiness up front occasionally, but I’m able to control it using the methods above.

      Though our experiences may be different, I hope the above at least gives you some ideas to try. Feel free to contact me if you want to talk more.

      Emma

  17. Diane Says:

    I have been dealing with this ‘mystery’ pain off and on for at least 20 yrs. It only hurt certain times, so wasn’t a huge crimp on my life. About 2 yrs ago, it got worse and didn’t go away. It basically hurts all the time, no matter what I am doing. Sex is out of the question. I am married and thank God my hubby has been fantastic thru all of this. My gyno & GP had no answers. Went to a specialist. He diagnosed me with the catch-all, vulvodynia. He did a biopsy and found out I had Lichen Sclerosis. Got lots of different creams to try and nothing really worked. Had a horrible reaction to Clobetasol. After a year of working with him, he said he didn’t feel confident treating me anymore as he wasn’t quite sure excatly what else was going on. He referred me to the ‘best of the best’ in our area. This new specialist found something to treat the Lichen Sclerosis, but also discovered Lichen Planus. Lichen Sclerosis is under control, but the Lichen Planus has taken over. I had two shots of estrogen about 6 mo apart. I was also put on Estrace intravaginally and Evamist (topical). He referred me to a physical therapist who specializes in pelvic floor therapy. That helped a little, but after 9 mo I haven’t gotten the results we had hoped. I have lots of problems with yeast infections, both in my intestines and vagina. Did a full detox in Jan 11, but it didn’t eradicate all of it. Now doing another detox and taking Nyastatin for intestinal yeast and Boric Acid for vaginal yeast. Still having pain at the 6 o’clock position on the vulva and pelvic floor muscle spasms. Dr. wants to do surgery, a vulvar vestibulectomy and do botox at the same time. Surgery is scheduled for 10/11/11. I am very nervous about this. I see a mixed bag of results on-line. Some show 90% success rate (also my dr’s success rate), while some show as low as 60%. Recovery time is all over the board too. A few days to a few months. I just want to know what to expect. I don’t want to go thru all of this and have it not work and/or be in horrendous pain for months. I have 3 kids, am extremely active and don’t want to be a couch potato! Any info or help you can give me would be most appreciated! Thank you!

  18. Miha Says:

    Hi ladies,

    I am a vvs sufferer for 9 years now. Misdiagnosed correctly many times. I found some revelation and improvement on my condition changing the toillet paper I was using. Now I use an unbleached paper towel since I couldn’t find a unbleached toilet paper in Canada where I live. I feel better now since my skin at 6 oclock spot doesn’t crack any more when I go to the doctor for a medical check or even when I have a pelvic ultrasound, like I had a few months ago. Still, I am not 100% healed because after having intercourse, I still have that bad cracking. I will try to change my laundry detergent, to use some more coconut oil and to try using my dilators. I hope I will get rid of this nightmare soon. Everything I used in the past, hormons, cortizone, creams for candida…etc… didin’t help. I think that we should focuse more to what caused our health condition on the first place and start from there. Best of luck to you all and I will keep you posted.


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