LADIES: if you are suffering from the stuff mentioned by everyone (as I am)...STOP TAKING THE PILL. adotfriz is right about the SHBG and testosterone levels being out of whack. I'm in california, so (after months of docs and failed treatments) I saw Dr. IRWIN Goldstein in san diego. he is the co-author of the book on CVVD website. i'd love to go into details about my history...but here's the gist: been on the pill on and off since i was 16. I am 23. then the vaginitis/candida, pain, everything. compound creams with lidocaine, homeopathy, accupuncture, low oxalate diet (which is bullshit in my opinion and depletes you of every vitamin you need). but one thing that has maybe helped is this yeast cleanse diet prescribed by my homeopath Dr.DeOrio in Santa Monica, CA. It benefits anyone with chronic yeast problems...you are what you eat! oh and ive lost weight :)
ok back to business. a couple days a go I drove 3 hours to see Dr. Irwin Goldstein in San Diego. he explained my anatomy (i thought i knew my vagina...turns out i had no idea!), and explained hormone levels. i got my hormone levels taken with a blood test a couple days before. unsurprisingly, LOW TESTOSTERONE. we need testosterone to keep the vestibular glands healthy...(low testosterone -> painful sex, in a nutshell). we looked at sample pictures of womens vulva. pre-pubescent, post (like me) pubescent, and menopausal. menopausal women lose their labia from hormone changes (which is a reason they do hormone replacement therapy). here's the kicker: I, a 23 year old, have lost one-third of my labia. let me repeat: I AM MISSING A THIRD OF MY LABIA BECAUSE OF THE PILL. the pill does this to EVERY WOMAN (varying degrees...but no one notices bc doctors arent looking for it). THIS IS SCARY, PEOPLE! THE PILL LITERALLY TURNS YOUR VULVA INTO THAT OF A MENOPAUSAL WOMAN.
i immediately stopped the pill. testosterone levels came up a bit. unfortunately, there is permanent damage in terms of the SHBG levels (still wrapping my head around this chemistry stuff). but with the hormones ive been prescribed, i will get much better.
******************************************************************************************************
*MY TREATMENT* :
1) NO MORE PILL. EVER. ever. or nuva ring or patch. fake estrogen is toxic. (according to doc, i should look into Mirena, bc it doesnt affect hormones down there...but the reason the commercials say you have to had been pregnant is because until pregnancy, uterus is still small, and it is difficult for a doc to insert the IUD bc they cant see well. oh, and it hurts for the patient).
2) Estrace cream directly to the labia and vaginal opening every night. this will regrow the labia. and also supposed to help the painful urination part (everything is so close down there...no wonder guys have a hard time identifying parts!)
3) testosterone cream ("Testim") to the back of my calves every night. it sounds weird. not FDA approved for women (insurance doesnt cover it but doc gave me a lot of samples), but woman dosage is one-tenth of man. and apparently it shouldnt give me chest hair or anything...eek! the testosterone will help the hormone imbalance issue affecting my hypersensitive vestibule. (by the way, i got to see this all on camera while my legs were in the stirrups..exact places where it is inflamed, etc. can we say awkward? ...but worth it!)
4) physical therapy/pelvic floor strengthening and relaxing etc.
5) relationship communication....we can all agree that vestibulodynia wreaks havok on a relationship (sexually of course, but emotionally WOW. i still dont think a man will ever truly understand the extent to which vulvodynia can drive a woman CRAZY). so talking things out, finding new ways to get off...mutual oral, etc... is anyone else having a feeling of guilt and/or subconcious resentment of their boyfriends/husbands? haha i guess thats for my shrink and i to discuss.
i am so lucky, and so grateful to have seen Dr. Goldstein. i'm sure you can all relate to the frustration of failed diagnoses, treatments,... but there ARE people with answers!
not gonna lie, i was still a bit disappointed after leaving the office (i feel better now, it was prob aftermath of being a crying trainwreck for months). i was naively hoping for an overnight cure. not gonna happen. with getting my hormones regulated, it will take a few months minimum. but they are confident that this will help. the receptionist had my exact problem and now she is "virtually pain free."
two weeks after stopping the pill, i feel significantly better by the way. but note to all, with the right doctors (and some $$$ unfortunately), IT WILL GET BETTER!!!!
**I HAVE GREAT ARTICLES ON THE RESEARCH AND STUFF, SO EMAIL ME IF YOU WANT TO LEARN. and...THANKS SO MUCH FOR EVERYONE ON THIS WEBSITE...ITS A BREATH OF FRESH AIR AND TRULY CALMING TO KNOW THAT I AM NOT THE ONLY ONE.
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LADIES: if you are suffering from the stuff mentioned by everyone (as I am)...STOP TAKING THE PILL. adotfriz is right about the SHBG and testosterone levels being out of whack. I'm in california, so (after months of docs and failed treatments) I saw Dr. IRWIN Goldstein in san diego. he is the co-author of the book on CVVD website. i'd love to go into details about my history...but here's the gist: been on the pill on and off since i was 16. I am 23. then the vaginitis/candida, pain, everything. compound creams with lidocaine, homeopathy, accupuncture, low oxalate diet (which is bullshit in my opinion and depletes you of every vitamin you need). but one thing that has maybe helped is this yeast cleanse diet prescribed by my homeopath Dr.DeOrio in Santa Monica, CA. It benefits anyone with chronic yeast problems...you are what you eat! oh and ive lost weight :)
ok back to business. a couple days a go I drove 3 hours to see Dr. Irwin Goldstein in San Diego. he explained my anatomy (i thought i knew my vagina...turns out i had no idea!), and explained hormone levels. i got my hormone levels taken with a blood test a couple days before. unsurprisingly, LOW TESTOSTERONE. we need testosterone to keep the vestibular glands healthy...(low testosterone -> painful sex, in a nutshell). we looked at sample pictures of womens vulva. pre-pubescent, post (like me) pubescent, and menopausal. menopausal women lose their labia from hormone changes (which is a reason they do hormone replacement therapy). here's the kicker: I, a 23 year old, have lost one-third of my labia. let me repeat: I AM MISSING A THIRD OF MY LABIA BECAUSE OF THE PILL. the pill does this to EVERY WOMAN (varying degrees...but no one notices bc doctors arent looking for it). THIS IS SCARY, PEOPLE! THE PILL LITERALLY TURNS YOUR VULVA INTO THAT OF A MENOPAUSAL WOMAN.
i immediately stopped the pill. testosterone levels came up a bit. unfortunately, there is permanent damage in terms of the SHBG levels (still wrapping my head around this chemistry stuff). but with the hormones ive been prescribed, i will get much better.
******************************************************************************************************
*MY TREATMENT* :
1) NO MORE PILL. EVER. ever. or nuva ring or patch. fake estrogen is toxic. (according to doc, i should look into Mirena, bc it doesnt affect hormones down there...but the reason the commercials say you have to had been pregnant is because until pregnancy, uterus is still small, and it is difficult for a doc to insert the IUD bc they cant see well. oh, and it hurts for the patient).
2) Estrace cream directly to the labia and vaginal opening every night. this will regrow the labia. and also supposed to help the painful urination part (everything is so close down there...no wonder guys have a hard time identifying parts!)
3) testosterone cream ("Testim") to the back of my calves every night. it sounds weird. not FDA approved for women (insurance doesnt cover it but doc gave me a lot of samples), but woman dosage is one-tenth of man. and apparently it shouldnt give me chest hair or anything...eek! the testosterone will help the hormone imbalance issue affecting my hypersensitive vestibule. (by the way, i got to see this all on camera while my legs were in the stirrups..exact places where it is inflamed, etc. can we say awkward? ...but worth it!)
4) physical therapy/pelvic floor strengthening and relaxing etc.
5) relationship communication....we can all agree that vestibulodynia wreaks havok on a relationship (sexually of course, but emotionally WOW. i still dont think a man will ever truly understand the extent to which vulvodynia can drive a woman CRAZY). so talking things out, finding new ways to get off...mutual oral, etc... is anyone else having a feeling of guilt and/or subconcious resentment of their boyfriends/husbands? haha i guess thats for my shrink and i to discuss.
i am so lucky, and so grateful to have seen Dr. Goldstein. i'm sure you can all relate to the frustration of failed diagnoses, treatments,... but there ARE people with answers!
not gonna lie, i was still a bit disappointed after leaving the office (i feel better now, it was prob aftermath of being a crying trainwreck for months). i was naively hoping for an overnight cure. not gonna happen. with getting my hormones regulated, it will take a few months minimum. but they are confident that this will help. the receptionist had my exact problem and now she is "virtually pain free."
two weeks after stopping the pill, i feel significantly better by the way. but note to all, with the right doctors (and some $$$ unfortunately), IT WILL GET BETTER!!!!
**I HAVE GREAT ARTICLES ON THE RESEARCH AND STUFF, SO EMAIL ME IF YOU WANT TO LEARN. and...THANKS SO MUCH FOR EVERYONE ON THIS WEBSITE...ITS A BREATH OF FRESH AIR AND TRULY CALMING TO KNOW THAT I AM NOT THE ONLY ONE.
i wish you all the best health!!!!
January 14, 2010 - 11:01pm-daniela
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