would like to know more about this condition. i do not understand why anti-depressants are a form of treatment for this condition.
I was diagnosed in the early '90s and there was not as much known and it was hard to think this would never get better. I have been in remission for a number of years but wonder if it could return as quickly as it appeared. Other sufferrs
Hi Vulvar Pain Ladies!
My name is Julie; 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 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 supportive, 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.organicl ubricant. 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.
â€â€Ã¢â‚¬â€Ã¢â‚¬â€Ã¢â‚¬â€œ
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@ wordpress. com
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Julie,
My name is Star Mejia and i want to tell you that you are not alone. I to have suffered many many years of misdiagnoses. I was told i have chronic uti’s for years when in fact i have IC. In February 2005 (strangely close to your dates) i had another UTI and from there on my life changed forever. To make a very long story short, i couldn’t get out of bed most days, gave up my job due to having to take so much time off work and sitting was the worst.
I had to DMSO treatments under anesthesia and hydrodestion. I was also diagnosed with Vulvodynia as well. I was diagnosed with Vulvodynia in June 2005 and IC in Feb 2006. I to did many of the treatments you have done. I had a cyst abscess on the right side of my bartholin gland and had surgery in 2001 due to that and found out later that the scare tissue causes a lot of problems as well. During my course of the last 3 years i have finally some how and not sure why pin pointed most of my causes. Believe it or not it was birth-control. My husband and i split up in April 2007 and i couldn’t afford to stay on the birth control so i stopped taking it. Slowly but surely i got better and my new obgyn said i found my trigger.
Of course the stress of our marriage was gone as well and i do believe our stress plays into our pain to. But after all these years of uti’s and chronic pain it ended up being birthcontrol (hormones basically). I am not 100% cured but i tell you, i am living life again and it is wonderful. I still have small pain everyday in my vulva but i use vitamin e oil each time after i use the bathroom and cleanse with warm water in a perennial bottle.
I also wanted to give you a tip on washing your body. I use Basis or Cetphal (spelled wrong sorry). When i am really irritated i just use warm water on a wash rag and i don’t scrub i just softly apply it. But these two products are fantastic and affordable. You can get Basis and the other one really cheap at Wal-Mart in the face cleansing aisle. I found that using to many products such as you had named, i was on many many more at one time and i really feel they were adding to my problems. I was chemically OD’d…lol…
Another fantastic affordable item i have switched to is Kroger brand laundry soap, it’s $1.99 for a bottle that washes about 30-40 loads. I am not sure what state you live in but if you let me know i can tell you if we have a store in that state. I also work for Kroger in the corporate office out of Indiana. I also use free and clear fabric sheets where ever i can find them cheap. There are so many different things i could come up with to give others ideas and i sure you would agree to the same but we would be here for a week.
I truly hope you are “cured” for a better lack of a word. I have decided i am not 100% cured but can most definitely go on with everyday life now and that makes me very happy. If you have any questions please feel free to email me back and if you have some tips please let me know. Indiana doesn’t have to many specialist if you catch my drift.
Best of luck with everything. FYI - I am sorry about your boyfriend and i completely understand how it affected your relationship, i have been there. Keep your head up high and remind yourself this is just another obstacle and tomorrow is another day. Mister right is out there.
Best Wishes
Star Mejia
Indianapolis, Indiana
Hi Star & Julie,
Thank you for your stories. I feel that there is some hope for me and you gave quite a bit of information for things to do and try.
I have just stopped taking birth control as well as paxil. I am also now in massage therapy for tension headaches. (Massage and therapy should never be in the same sentence)
Star you mentioned a laundry detergent, is Fred Meyer a Kroger store? I have one in my neighborhood and what does the laundry detergent say on the bottle. Also, is there a safer bleach to use?
My husband has been supportive however is frustrated. I have no sex drive and I am so afraid of pain because it is intence during intercourse.
Do you suffer from a chronic itch and not matter what you can’t seem to get comfortable?
Any other information from anyone else who suffers would be great…
I have to use Dreft for laundry detergent. Target also carries a brand that is for sensitive skin- babies to be exact. And I hand wash my underwear with johnson’s baby soap and use this to wash my vaginal area as well. To be honest with you, the thing that works the best for me is the low oxilate diet. It’s a pain to give up all those foods, but I swear by it. Getting off Birth control helped me a lot and I noticed my symptoms get worse right before my period. I believe the raise in estrogen or other hormones produces an increased production of oxilates- and the research supports this. I can definitely notice a difference when I am strict to the diet and when I cheat a bit- I feel pain. I do sometimes get yeast infections, which I usually think are just the symptoms of the VVS, but when Iam not eating anything I’m not supposed to and I still have the symptoms I know it’s time to head to the doctor. Also I take Citrical 2x per day and drink a lot of water. This helps.
And I totally feel for you with the no sex and being scared to have sex because it hurts. And this affects your sex drive as well. I have found other ways for my partner and myself to both get pleasrure without having sex. Also working out- exercise helps a lot. It will help with your symptoms of anxiety and depression, self-esteem and everything else that goes along with this. It will also increase your sex drive and I feel it helps my body flow and run a lot better. My body seems to be less sensitive when I work out regularly. But for me it all ties into what I stated above. Also pay attention to what your eating when your feeling bad, because it may be a lot of the foods you should stay away from: i.e. chocolate, alcohol, pasta’s I know it sucks!! Good luck!
-Elizabeth Lozano
Wow,
I read your story. I hate to say it, but I’m glad I’m not alone. And struggling with this is so hard at times. YOu really went through a lot and had horrible episodes. I never actually went through with the surgery, but I was all set up for it. 4 doctors in a room poking and prodding at my inflammed and irrated vagina from 3 o’clock to 9 o’clock. It’s crazy how it can be so bad sometimes and totally okay at other times. And going to doctors for years of what I thought were UTI’s and yeast infections, and doctors stumped. I had one say “I hate to say it’s all in your head, but…:” I often explain the pain from sex as “imagine your on a skateboard and going really fast down a hill, you fall and get a horrible scrape, and open wound. When having sex it fells like yor rubbing hard back and forth on that open wound.” It’s so bad, that even trying to continue is impossible, and the tears just fall because the pain is so intense! I have felt so bad for my partner too, which he’s been more than supportive, but it definitely puts a strain on your self-esteem and how adequate you feel as a partner.
By the way, have you ever tried the low oxilate diet, it’s the only thing I have found to really help. I know your’s sounds to be more sever than mine, but I’m sure anything that can relieve pain is worth trying. It’s hell to have to live through this, but it’s good to know that there are other’s out there that we can depend on for support.
Thank you for sharing your story,
Elizabeth Lozano
Irvine, CA
Marley,
It’s nice to hear from you. I read over your letter and had a few comments for you.
Fred Meyer is a part of Kroger, you could see if their off brand offers the free and clear liquid laundry soap. I usually run my washer twice to be sure everything is out.
As far as the bleach is concerned. Wooooh…l wouldn’t dream of using bleach. I don’t know if it would hurt me at this point and i really don’t want to know. You might try the tide pin if you get spots on your shirts or pants. If you need help with the personal clothing try peroxide and then wash them in the free and clear liquid laundry soap (two times).
I don’t have the itch that some other have. My problem consists of continuely burning so bad that i can’t get out of bed or put clothes on at times. Becareful with the over the counter stuff because it says it will help with itch but can irritate you more. I use vitamen e oil that i buy in the vitamen aisle at Wal-mart. The price is $3.38 here in Indiana and i also rinse each time i use the bathroom with a perrinal both (the bottle they usually give to you after you have a baby). I dab try with a wash cloth. I use angel soft tissue if needed but usually use the wash rag because it has been ran through wash and i no that no perfumes are on it. I only use the toilet paper for #2. FYI - don’t use wipes of any sort…OOOOUcCCCHHHHH…lol.
Believe it or not i have found foods that hurt me as well. I am positive that salad dressing such as Ranch sends me crazy and so does certain sour cream. I can eat tomato products in small moderation but have to be very careful not to eat them to close together. Barbaque sauce is another trigger as well. FYI if you have IC - don’t use cranberry juice. If you drink cranberry juice that acid attacks your bladder…i found out the hard way.
Marley, another fantastic thing to try is prelief, it is over the counter and you can buy it at drugstore.com as well. It is suppose to take the acid from your urine which is some of the problem. I used it for awhile and loved it. It didn’t take all the pain away but helped a little. Baking soda a few times a day helps as well. Try looking on IC-Network.org or IC-Network.com i can’t remember which and it offer alot of information for Vulvodynia and IC.
I hope that some of this will help you. You are going in the right direction with getting off the birthcontrol. I went with a non-hormonal IUD called Paragard. It is good for 10 years and doesn’t have any hormones or anything. It is pricey it cost me $505 here for the procedure and the IUD it’s self but if you think about the cost of birthcontrol over 10 years it adds upto about what you pay for this one IUD. You can google the Paragard and get into their website and they do offer assistance to certain qualifying people as well. The send the product to your doctor (usually a OBGYN) and it is suppose to be cheaper doing it that way. Now if you don’t want to us the IUD then i go with Latex free condoms with my spouse and astroglide for lubrication. Alot of people don’t realize that they are allergic to latex gloves or condoms in that private area, they can make your life really bad. Also, be careful with KY Jelly, i couldn’t use it at all. I go with the vitamen e oil or
astroglide. Try to go with a lubricant that is as mild as possible and free of as many products as possible.
Talk to you soon.
star
Marley vestibulitis-cpt2349@lists.careplace.com wrote:
Hello, I have primary vvs, was diagnosed four years ago. in july i think i am going to do the surgery.