Dear Andrea,
I started with this pain approximately 12 years ago. (I had it for 10 years! ) but 2 years almost of being Pain Free today! (Dec 2000) It started out with pain and burning after sex, but thru the years continuously got worse, and believe me when I say 'I Loved Sex', I thoroughly enjoyed it to it's fullest degree. It was one of my major motivations to find and cure what was wrong with me!! At first I felt dirty and ashamed as though I had some horrible disgusting contagious disease and didn't tell anyone. I was even very reluctant to mention it to my physician, 'I', who was quite bold about sex, knew all there was to know about it, could talk about it openly and freely, but could not talk about this as though I had leprosy!!
I even gave up a very nice relationship, because I felt sorry for him! I knew that if 'I' couldn't have sex, life wouldn't be worth living as far as quality for me. I know it's not important in everyones life but it was 'extremely' to me, it was a part of who I was, my whole being, my self esteem, my part of being a woman and fortunate enough to have always enjoyed it.
After years of trauma, (most likely caused by various treatments by physicians I might add,) to my vaginal area, I was in horrible condition, most of the skin had almost fallen off, I went from the extreme painful burning inflammation of bright red, to a dull gray ugly color, I had blisters, (biopsy showed only blister water), and I would daily have to prick the skin to let the water out as it had stretched it and would fill up again and had unbearable pain.
I had labial and clitoral fusing, (as I watched this take place in a matter of approximately 6 weeks) *sigh*.. weeping, seeping, oozing, pain all the way back to my tail bone even. I literally looked like a corpse! I was given steroids such as Clobetasol/Temovate, Pramasone and others...from several doctors that in my mind only added to the problem with over use, (of 9 mos) with them telling me to slather it on. YIKES!! (today, I'm sure this probably caused the blisters and fusing) I now know that the maximum time frame for use is only 2-4 weeks...and just a minimal pea size dab... I've even read this from the manufacturers.
The side effects of these topical steroids are identical to what we're trying to cure *ouch*... as well as causing atrophy and skin thinning. Clobetasol was one of the many I used and it is good for initial pain but one that's 'acute' and not 'chronic', and it's one of the most potent steroids out there! Talk about a nightmare! I won't go near a steroid now, but because of what 'I' experienced with overusage, as well as how it affected my whole body including 'buldging' eyes *sigh* and bloat.
THINGS I'VE USED... in my 10 year search for my vulvodynia or Lichen Sclerosis with severe vaginal pain! (a Rose by any other name) and even tho I had biopsies nothing ever conclusive showed up to give me a specific name... but if it's considered topical and in the skin or at the opening of the vestiuble, and there's no infection, nor any psychological issues or muscular, these are things I tried. I Just want to reiterate that, as I'm sure other's may have pain for other reasons.
In those ten years time frame, I've done the low oxylate diets, the antiyeast diets, no sugar diets, no gluten diets, checked my thyroid, blood tests, biopsies (3), used antibiotics, used antifungal creams, herbs, acupunture, acupressure, biofeedback, exercises, took minerals, inserted boric acid and yogurt, acidophilus, washed and wiped the correct way, dried myself with a hair dryer, wiped the correct way, rinsed after urinating, cooked my panties in the microwave to destroy what?, changed soaps, eliminated soaps, wore no panties or slacks, AND.......
I used most healing creams, Bag balm, Udder cream, Johnsons baby diaper rash cream, Yes.... there's more..*sigh* and once even sat in a basin of almost pure 'bleach' water trying to kill this thing. I have been tested for everything imaginable such as yeast/bacterial/parasite/virus's/etc.. but nothing ever showed up! NOTHING WORKED for me.. perhaps some gave short term relief, but never 'fixed' anything, it always returned with a rage. It seemed these were nothing more than 'band-aid' fixes or temporary at best. If anything, once again I felt like a Victim with all the Self denial involved including forgoing sex. That is until I started using the Estrace and natural Testosterone creams!!!!!!!
I also saw at least 10 to 12 Doctors during this time from gynecologists, GP's,and dermatologist to internists... Had 3 biopsies that only showed severe inflammation! They kept giving me steroids which absolutely exacerbated the condition something horribly. Clobetasol was the absolute worst thing I could have used, but I will say it was the 'continuous' use of it as it's side effects are thinning of the tissue. *sigh*, short term (a few weeks) may be fine, but I ended up with severe blisters, a weeping, seeping oozing mess, my labial lips fused and so did my clitoral shaft. I could barely walk let alone sit or god forbid think of having sex and the pain was unbearable! Most of my tissue literally fell off, or atrophied and disappeared is perhaps a better word!
I want to say once again, that I also KNEW that my condition was NOT caused by any psychological issues nor any muscular or pelvic pain. Mine was on the skin itself especially at the vestibule opening and between the labial lips and clitoral area. It was visible under a high powered microscope where the skin itself felt like it was ripping or tearing as though it had no 'give', or stretchability, no resiliencey, no collegen or elastin, and would just rip.
Under the microscope (imagine that position of me trying to look *chuckle*,) but I could see a gazillion of tiny razor like splits, just like the skin looks with a razor cut if pulled part, deep pink in the crevices. At the time I prayed the doctor didn't think I was into self mutilation, *sigh* as many physicians tend to make us feel it's psychological when I knew better. By the way, I now know that fusing is natures way of healing, to try to close that wound.
The Clobetasol is the latest 'therapy' for the use of relief of Pain and Itch (which I never had) and as I said, it 'may' be good for short term use, but I'd NEVER use it myself for more than a few weeks or flare ups..because the side effects are what devasted me with OVERUSE.. the side effects are EXACTLY what we're trying to cure.. so I'm just saying LISTEN TO YOUR BODY... IT KNOWS.....so be cautious. Please?
I've run the gamut with this damn Vulvar Pain, believe me, and have tried most of the protocols out there in the past 10 years, (as you can tell, *chuckle*) but in my years of research I ran across several medical articles mentioning the use of Estrace (Estradiol 17 beta)cream, (not Premarin) to be used to rebuild the tissue. (no matter the age) and one does not need to be menopausal for this as it's absorbed very minimally used ONLY on the top of the skin and at the rim of the opening or where ever the pain is, in my case even back to the anus.
One (but others too) inparticular was Dr. Willems article and his use of it pre-surgery and he found out that some women even cancelled the surgery with this protocol. Though he suggests using it twice a day, (NO WAY) but he has no idea of the pain we're in and that's why so often many won't use it..or start then give up!! But using it the way I do has worked! (You'll see below.) By the way in case you haven't seen that article (it's only ONE of many I have) here it is:
http://www.vulvarpainfoundation.org/topical_estrogen_treatment.htm
HOW I USED THE HORMONE CREAMS:
Anyway after 10 wasted years of trying all of these various modalities and all my research, I started using the Estrace, (Estradiol 17 beta) cream topically which is all natural, identical to what we produce our selves and made with soy/yams...only a pea size dab perhaps every 3-4 days in the beginning as it was very painful and extremely sore.
Others who are not that bad or irritated can use it once a night, but if irritation happens just let it 'simmer down' then continue with it. But I KNEW at least I wasn't damaging my tissue but feeding, nourishing, strengthening and rebuilding it. By the 2nd month I could use it perhaps every 3rd day to eventually almost every day as the tissue started to get healthier and less tender near the end of my six months.
Remember....This is NOT for pain relief (eventually yes) and if you're hurting just let up on it for a few days..or even a week if necessary.
I know now (didn't back then) that you can also get Estrace in it's generic form from a compounding pharmacy where they may eliminate the irritating ingredients... but the main hormone (Estradiol 17b) is there as that's what we produce all our natural lives and yes yes yes.. can restore that tissue. The number of an excellent one is College Pharmacy at 1-800-888-9358 *in case* it's also where I get my natural Testosterone cream from. (more below) They're considered one of the three best in the country for consistency and reliability.
LISTEN TO THE BODY, but don't give up on it, then go back to it, (LET UP BUT DON'T GIVE UP!!) eventually the pain gets less and less as the skin rebuilds and toughens. For relief meanwhile, one could use something like Johnsons baby diaper rash cream, A&D ointment, Desitin, Aveeno soaks or even a steroid (tho I hate them) such as Triamcinolone ,but for a few days only, to help with the pain is ok.
You still will have flare-ups but you would anyway, (keep that in mind!)and they'll get less and less as time goes on! As I said this is NOT for pain relief, but eventually as the tissue rebuilds there is NO MORE pain!! I just kept in mind that 'I'm feeding and nourishing and rebuilding this tissue', (even if it's only once a week) as I said it's not to relieve pain but eventually get eliminate all that pain...
Anyway, by the 3rd month I noticed the lips were unfusing, it was like a miracle!! I couldn't believe it!! Is it really coming back?? I was getting a healthy pink color again. And on the 4th thru the 6th month I also added a topical Testosterone crea(natural made with soy) NOT METHYL!! that I get from College Pharmacy (I used one on top of the other) gently massaged in and a Q-tip to 'twirl' in the clitoral area,(very important if you have pain or fusing there). I used a ratio of approx. 3 or 4 nights of the Estrace to 1 of the Testosterone.
By the end of 6 months I was 110 % better. (after 10 years)WHEW...totally back to the 'old' me.... (just too bad 10 years older tho, haha) and 99% of the labia returned as well as the clitoral shaft and that buried 'pearl' could be exposed once more. It was a miracle!!!!!!!! and no pain at all !!
There is one other thing I did in the 4th-6th month that I swear helped too, and that was using an aloe vera Capsule vaginally... I'd tried other brands but had no luck, but one I did and that was from http://www.alotek.com I swear by that one.. anyway, I'd open a capsule, add about 1 teaspoon of hot water, dissolve it and insert it nightly maybe 4-5 days a week.. I originally used it for a bad pap, (which is now fine) but found out accidentally about it's 'healing' and soothing virtues... It's called their Immune Supplement and I also took two a day orally.. It just kinda made sense to help the immune system too. It certainly fixed my paps!!
Well, finally after 6 months, I put it to the test and had sex, (Yes, I was scared to death tho) and all was fine, YIPPEE and has been ever since and it's been 19 months now!! YES.. I do count the days after 10 years of HELL. *chuckle*
As you can tell I've certainly focused on the Agony of all of this, but for the Ectasy *chuckle* it was worth it. To talk about that part is another whole story, haha.. and for another time.
I still do a maintenance dosage of twice a week of both the Estrace and Testosterone cream (I don't forget this) and also the Aloe trick twice a week (when I think of it) as it's great if there's any tenderness at all, but haven't had a flare-up in all that time. And absolutely no side effects from any of these hormones including the Testosterone, NONE. Keep in mind that both the T and E that I use are made with soy/yams , very natural, (prescription tho). (I use College Pharmacy to compound my T) and reg. Estrace from the drug store.
I'm convinced it's the answer and other things like low oxylate diets, guai, boric acid, soaps, anti yeast meds, biofeedback, and diets are all secondary, (and I tried them all) but for 'me', it's the rebuilding of the tissue that is the issue. ha ha.. The issue is the tissue, ha ha I'm poet and don't know it... 'I can only laugh now' *chuckle* we all know when we're that raw even water can burn, that's why we often associate it with foods or whatever, of course anything would burn, but the underlying cause is the tissue, not what we're eating... in my experience anyway.
My pain was all external, started as POC, (pain on contact) to eventually 24/7 of pain. I could see the tiny razor like splits, fissures, or paper cut like cuts. And just knew if I could heal that skin I'd be ok.
For those with internal pain, or issues with the muscles, I don't know if this would work or not.
I hope this helps someone out there, but it definitely was the answer for me. By the way this can even work somewhat for surgery scars to rebuild the skin, as the Estrace is known to soften scar tissue. Surgery was one of the few things (nor the antidepressants) that I didn't do! but I sure was close to it with the pain I was having.
I'm also on support group lists, and I've had some good reports of same with them, some are into their 4-5th month of usage and swear their pain is down to a 2-3 compared to a 10 a while ago. Also just to mention I've got letters from women who's labial lips are unfusing and their clits are 'peeking' out once again.. I'm just so thrilled for them!! It just takes time and patience, much as it takes hair to grow out or a black fingernail to grow out, and nothing will rush it and it's the same with using the Estrace and Testosterone, skin just grows at it's own rate, and some gals quite too soon like 6 weeks or so and feel it didn't help but I know they just haven't given it the full time. *sigh* to see the full results, in my opinion anyway.
Well, I've sure rambled a lot here and hope you don't mind and that maybe it will help, it definitely was the answer for me, and just 'maybe' it might be your answer as well, I hope so!
Take care and good luck!
I know how alone and lost I felt initially and thank goodness found the people I did and it's why I stay on the lists even though I'm fully healed. If I can help one person not go thru this hell it's worth it. If I can ever help in any way, just give a 'toot'. Takecare,
Warmest Regards,
Dee Troll . DTroll@cboss.com :)
P.S. by the way, both Estradiol 17beta (Estrace) and nat. Testosterone (I will NOT use the Methyl form) are both known to rebuild tissue, and this is from major medical sites, not layman's or 'for profit' sites, they even think that Testosterone may be more beneficial than Estrogen for those bones and Osteoporosis.
see, I just can't quit talking, ha ha.. Bye~~~ Dee~
