Hi everyone! I just responded to adotfriz's story, but there are so many comments that go in different directions, so i am starting my own! it's an open book. feedback appreciated!
I'm 23. I had been on the Pill (Ortho-lo, Yaz, Yasmin, & Mircette) since age 16, on and off. It was great for my irregular cycle, heavy flow, and insane cramps. and it helped me predict my migraines. Back in August, I started noticing rawness after sex...specifically around the edge of my vagina toward the perineum. I suspected bacterial vaginitis (which i had a couple years back), so i called my gyno, she prescribed me metrogel (the kind you insert, not topical). It got worse. the sequence of events gets blurry, but i remember things getting drastically worse.
i couldnt get an appointment with my holier-than-thou gyno on rodeo drive (literally), so i saw my general physician. at this point i had incorrectly self-diagnosed myself with trichomoniasis (word to the wise- webMD'ing your symptoms and coming to your own conclusions can be a terrible idea!). I was sobbing in her office, thinking the world was going to end. she looked down there and assured me it was just a nasty yeast infection. it was extremely red, chapped, cracked, etc. i got diflucan, and rx-strength clomitrazole cream with hydrocortisone in it. apparently i didnt quite understand this, and used this cream AND an otc hydrocortisone...later to find out that i essentially overdosed on the cortisone (a steroid), which thinned out my my vulvar/vestibular skin...i was insanely sensitive at this point. sex was excrutiating. my boyfriend says he felt my spasms. i think the pain was worse immediately AFTER the sex. i felt like i was peeing fire.
i went back to my gyno, had another pelvic exam, cultures taken, everything came back negative, and apparently there was nothing remotely abnormal that she could see. so i was diagnosed with vulvodynia (just a blanket term for vulvar pain, and quite frustrating). she sent me to a compounding pharmacy to get estriol (estrogen) .2% + lidocaine (numbing) 5% in an aquaphor base. the estrogen definitely helped thicken my skin. the lidocaine...didnt really help. and now i am told lidocaine is not a good idea for various reasons. i still couldnt have sex. i couldnt urinate without pain, i actually felt like always had to pee...but a distinctly different feeling than a UTI (ive had a handful of those). i couldnt sit comfortably...which screwed me over in preparing for the LSAT exam to get into law school. the panic attacks were so bad...i either fainted before/during class, or ran to the bathroom as if i had IBS. needless to say, the anxiety took over every aspect of my life. and in many ways it still does. all day i research vulvodynia, vestibulitis, yeast... it's become an addiction.
anyway, i later saw a homeopath who had apparently helped women with vulvodynia...he didnt seem concerned with any details of my condition. now this sounds crazy: he prescribed "medorhhinum" (sp?)...a teeny tiny amount of gonorrhea (what?!? are you kidding me? granted i have never had an STD, and was scared that now i would test positive. he assured me the amount was too tiny to actually give me anything, but somehow would cure my condition). the philosophy of homeopathy i don't fully comprehend. he also gave me "thuja" ...an herb for my emotions. he explained that anger is manifested into vaginal pain. I dont know if the two remedies helped. i also got accupuntrure at his office (focusing on the liver). the most important thing i got from him was was an understanding of how yeast is detrimental to anyone's body, vaginas in particular, and the dangers of sugar.
***YEAST!!!!**** i didn't realize it played such a role in my pelvic pain...i didnt seem to have any other yeast infection. no discharge, nothing. even though my paps came clear that i got rid of the infection, it is possible that the yeast is so deep in the tissue that it's undetected.
the homeopathic doctor put me on a yeast-detox diet. my diet changed DRASTICALLY. the diet is extremely limiting, but i'm used to it (minus a few sugary indiscretions). it is NOT low-oxalate. in a nutshell: no sugar, no fruit (except grapefruit, lemon, lime), no dairy, no wheat or gluten or any "carb," no vinegar, no mushrooms, no tuna, no fatty meats, no processed foods, no caffeine, no alcohol (especially beer and wine), no soy, no peanuts, barely any beans, certain vegetables...the list goes on. basically i eat lots of leafy green salad with lean proteins.
I've been on this diet for about 5 weeks (6 week minimum according to his plan, before slowly incorporating foods to see what reactions will happen). i feel MUCH better. and healthier. and (without intention) lost at least 5 pounds :).
*side note: my boyfriend went oversees for a month, so i hadn't attempted intercourse.
my next step: after more research, i found a doctor. a vulvodynia specialist. he actually wrote books on his research. Dr. Irwin Goldstein in San Diego (a colleague of Dr. Andrew Goldstein in NY/DC/MD). i called his office, crying of course (crying has become an everyday norm). the receptionist was wonderful. she had vvs/vestibulodynia at some point, and understood my frustration. the first thing she said was, "are you on the pill?" ..."yes." ..."STOP TAKING IT." so i did. i immediately noticed results.
two weeks later, i drove 3 hours to san diego. my hormone levels were tested (ew needles!). my testosterone was extremely low. and my sex hormone binding globulin (SHBG) was really high. Dr. Goldstein explained that the Pill (or patch or ring) gives you fake estrogen, like 600 times the amount you need. i dont get the science quite yet... but testosterone is necessary for the vestibular glands to be healthy, lubricated, etc.
another thing...quite frightening, and a warning to all Pill users, the Pill makes your labia disappear...mimicking menopausal women who dont do hormone replacement therapy. turns out, I AM MISSING 1/3 OF MY LABIA. it just folded back into the outer vulva (where the pink meets your regular skin color). THIS HAPPENS TO ANYONE ON THE PILL. severity differs. the younger you were when you started, and the amount of time on the pill make it much much more severe. but still.
IF YOU ARE ON THE PILL, WATCH OUT. GET YOUR HORMONES TESTED. TRY TO FIND OUT IF YOU'RE LOSING YOUR LABIA.
Dr. Goldstein explained more stuff, stuff i am still wrapping my head around (he also gave a book). the rest of the exam went with me in the stirrups, he with magnifying glasses looking around, and his assistant taking photos which appeared on the large screen in front of me. biofeedback. he would q-tip several parts, i would rate pain from 1-10. the parts that hurt were red (wow did i get an up-close picture of my genitalia...). and then he inserted a penis-shaped thing to test my reaction, pelvic muscle strength, kegel, relaxation...which wasnt pleasant.
***but kudos to him, he was extremely gentle, compassionate, and understanding, and not pervy and didnt make me feel as uncomfortable as one would imagine. and having my mom hold my hand was really helpful (and quite a bonding experience haha). he treated me as if i were family.
...anyway, i was finally diagnosed with "vestibulodynia," formerly known as "vulvar vestibulitis syndrome."
the disappointing news is i wont be getting the "quick cure" i was naively hoping hoping for. the hormonal damage takes a long time to get better (shbg levels will never be the same though). 3 months at the very least to notice significant changes.
***MY TREATMENT PLAN:***
1) estrace cream .1 mg applied daily as a thin film to the irritated areas of the vestibule, and around the rim of the entry to the vagina.
2) testim 1%. a testosterone gel. a pea-sized amount for the back of my calves. nightly. yeah, sounds weird. apparently cats can smell it.
3) physical therapy. pelvic floor strength, relaxation, etc.
***OTHER THINGS I'M TRYING ON MY OWN:***
1) i carry around a little spray bottle filled with filtered water. every time i urinate, i spray a couple spritzes around the urethra and the general region. it soothes. then i carefully pat dry (with a new piece of toilet paper). it helps soothe the burning sensation.
2) i take supplemets-
-calcium with magnesium. one in the morning, one at night. your body can only absorb so much at a time, so spread it out.
-refrigerated probiotics twice a day. expensive though.
-multivitamin made for women. food-based.
-a b-complex
-currently doing a "colon cleanse" (vitamins twice or 3 times a day). the idea is to get the yeast out of my system.
3) on some days, i wear ugly all-white 100% cotton underwear. but i wear a thong at the gym because i dont want sweaty underwear. after workout, i immediately change out of clothes and shower.
4) avoid alcohol. especially WINE AND BEER. wine makes the pee sting more, and beer is yeast. my nutritionist says if you "must" drink, stick to vodka or tequila.
5) i'm looking for emu oil, my local whole foods doesn't have it.
i am a believer in a more "whole-istic" approach to healthcare. so while i am optimistic about the hormone therapy, i will continue my yeast-eliminating diet, taking vitamins, maybe start using grapefruit seed extract, argentyn 23 colloidal silver, and uva ursi, among other natural anitfungals, and the live culture probiotics. i am getting back into light cardio (no bike), pilates, and yoga, and will start physical therapy with a woman who has lots of training in vulvodynia. Dr. Goldstein did some research for me and gave me her contact info. and by the way he is great with email. in two days he has answered about 20 specific questions.
i do have a confession to make...my boyfriend came back to town...and we had sex! it was done extremely carefully. every time i got anxious and tensed up, i told him to tell me to relax, and that he is here with me and that everything will be ok and that there was no pressure. it made a huge difference; my muscles relaxed. i would say overall the sex was approx. 90% pain free. timing was important, too. when i was ready to finish, i made sure he did so as well. because right after finishing, my muscles contract, so he needs to be out of there. the after-sex part (usually the worst for me, when i go to pee and rinse off) wasnt bad at all compared to earlier. an ice pack really helped. i DONT regret it! and we will find other ways to accomodate me, and positions, timing, etc.
i am optmistic. the more i learn, the more secure i feel in understanding what is going on with me, knowing that so many other women have been gracious enough to share their stories, and their treatment pros and cons. i've learned a lot.
*another side note: vulvodynia.com has helped me learn lots...guestbook 24 helped learn natural stuff that i will try. the website is tedious but worth it.
i have accepted the fact that no matter how much better i get, i will always have the vestibulodynia concern. it can flare up again. but i can also learn what triggers the flare ups. optimism is very difficult...but it's growing on me.
*last note: i recognize that i am very lucky. i sense that my pain and anguish is much less than many of yours. i can only imagine years and years, no diagnoses, extreme pain, etc. my prayers are with you.
thank you for reading, and i welcome and look forward to learning and sharing with all of you. please shed some insight! for me, for all of us. if you cant message me through this site, email me at [email protected]. i dont check it regularly, but i will start.
as for now, it's late, and i will take my klonopin. haha. hopefully i wont need the anti-anxiety meds forever!
hoping every one of us improvement and sense of peace.
with much love,
daniela
*IN CONCLUSION, THE PILL + YEAST = VESTIBULODYNIA* WATCH OUT FOR BOTH.
ps- anal fissures anyone? ouch!!!! ideas? remedies?