Long post/ Re: A flurry of questions from a newbie

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Sorry for the length of this - but thought his might give you a framework in which to work...... From my own experience I believe that this disorder is not caused by a single defining problem. I believe that this area is by nature tough and resilient - after all look at what it contends with, stretching for intercourse, for birth, tolerating constant discharge and menstrual blood among some of these. So in order for us to get into this shape - it seems to me that first and foremost this disorder must be a culmination of several or many problems over the years finally coming together and causing the problem - sort of like the straw that finally broke the camels back. As you will read below - there were a number of issues contributing to my problem and it took listening to my own body and READING READING READING whatever I could find about my symptoms. You kinda have to start somewhere to find the source of the

irritation. Make a plan and follow it til you rule out (or in) every thing that we collectively on the the list, and you personally - can think of as a source of irritation. I made a hand written list of things to check out and kept it updated as each potential source of trouble was investigated.I also kept a daily journal in which I wrote my daily pain levels (very important) and EVERYTHING else about the day - what I ate, drank, took as meds, did for excercise, vitamins, and so on. I wrote down EVERYTHING. The overall pain level part was at the top of each page - in very large numbers and the TYPE of pain was described right below that, i.e. tugging sensation 6 on 1-10, burning 4 on 1-10, left labial and inner thigh pain (I have pain from the left outer labie and beneath it to the muscles and tendons there down the left inner thigh). ANyway you get the picture. If on Sat. and Wed. I had severe pain - I would

look for commonalities in those days in any area and evetually began discovering patterns. So If on a given day, I had severe left inner thigh pain and left labial I began to discover that it was consistently when I had done my shopping, pushed the grocery cart and been moving about quite a bit. Turns out this pain (left labial and left inner thigh is almost completely attributable to the pelvic floor, and body mechanics issues, due to chronic low back, severe knock knees and an injury to left foot and calf that left damanged muscles and nerves which were never properly addressed in physical therapy. My unconscious adjustment of the way I walked eventually affected nerves and tendons in the groin. 8 mths of PT adjusted these probs.If I ate oatmeal, I could be guaranteed that 2 days later, I'd have severe burning pain of the vulvar skin. But if I hadn't been writing it down - I wouldn't have known this. YOu get the

picture? I could track certain pain and increased pain levls to certain activities - as recorded in my journal. It really helped me a lot.Then, I slowly (after joining this list) rule out (or in) each possible trigger that I couldI was tested for:1.) hormonal deficienies (Was found to be estrogen and tesosterone def. - am now medicated) 2,( thyroid malfunction (was found to be hypothyroid-am now medicated3.) Chemical allergies (Tested positive to quite a number of things and have since eliminated from my life)4.) A vulvar biopsy to rule out the Lichens and or serious issues such as cancer. (No Lichens, no cancer) reviewed by a dermopatholgist and a reg. pathologist.5.) Blood tested for HPV, Herpes, and other sexually transmitted diseases. (All ruled out)6.) A thorough gyn exam which included growing cultures for yeasts and testing for BV chlamydia and trich. (All ruled out except for once in a

while yeast, which is now corrected by the daily usage of Danactive probiotic drink.7.) Evaluation by a physical therapy for pelvic floor issues, which was a problem for me and for which I received 8 months of therapy.8.) Eliminated daily use of light days pads for urinary incontinence.9.) Stopped all soaps on my girl parts and also began washing my hair outside the tub once bath/shower was over as the runoff from shower down body would get shampoos etc. onto pelvic area.10) Used topical antihistamine on vulva and took Claritin every night.This all took about two years, but I am (on a scale of 1-10 with 10 being the worst pain) down to a daily level of 0-1 for pain. I have dysesthetic vulvodynia which is 24/7 pain of unknown origin or cause, and mild vesitulitis but I am a happy camper now compared to summer of 2002. I have reentered the marital bed and able to participate and enjoy and

have in fact been told by my gyn that though women shrink at the suggestion when in such pain - it is highly recommended that sexual activity be pursued to climax as often as possible to bring blood flow to the area which helps to heal and nourish. As in any 'extremity' - it cannot be healthy if blood supply is short. Given that we (with this disorder) are in an almost constant state of clenching that area to tolerate the pain - we are pushing the blood elsewhere and not allowingproper 'healing' to occur. My husband and I became creative to try and accomplish this as frequently as possible, even though actual intercourse was not possible for nearly a year. It is advisable to google the 'symptoms' of hypothyroid, pelvic floor dysfunction, HPV, herpes, trich etc, ... and see if you fit any of these profiles.It is important to note that I am now 59 and menopausal. That doesn't mean however that the differences in

our ages means you couldn't have any of the conditons noted above. I was hormonally deficient in my late 20's due to premature ovarian failure - so DO NOT let a doc talk you out of being tested. Check our archives for the best time in your cycle to be tested for hormones.Hope something in here helps. Don't give up - just make a plan and follow it through to weed out potential irritants .Two more important tip - get copies of EVERY SINGLE test result so that you don't accidentally get given the wrong results and think everything is fine. That is your right and you should be keeping a file of your own. Try to always take someone with you to docs office and be prepared when you go with a list of questions and requests. Don't be talked out of what you believe. The patient advocate you take with you can stand up for you if you become emotional (which is not uncommon in people with chronic

pain).Good luckDustyEva wrote: First off, thank you once again to everyone who has responded! I havea lot more replying to do, but I wanted to get this one done while Ihad a break in class/work/club management.The doctor I had recommended in my area was Dr T. Fleming Mattox,Director of Urogynecology at the Center for Women's Medical. Anyonehave any opinions, experience, or other recommendations for theUpstate SC area? I'd be willing to go as far north as Asheville, NC,and as far south as Columbia, SC, if I had a REALLY goodrecommendation. I could possibly go to ton, but not until Ihave a break, and I'd rather not wait that long.As to my pain during sex (or attempted sex), it's primarily a burning,stinging pain at the entrance during

penetration and with any movementafterwards. Sometimes there's also a dull pain deeper inside thevagina, but that's not as regular and doesn't bother me nearly as muchas the former.Much gratitude,Eva> > >> > > Hi Eva, and welcome to the group, though sorry you have to be here.> > Since being on the group for six years now, I've read stories too> > where 'some' women cannot have sex at all, it's not everyone, but most> > of us have had/or do have issues with painful sex. There are so many> > variables when

it comes to this... You asked if you should still hope> > for this to go away... I say, YES...but it might take trying different> > things until you find the 'right' combination for you. Several of us> > do use the Lidocaine before sex, I use it myself...and it does seem to> > help, but only after I began using topical estrogen to 'rebuild' my> > vulvar tissue. Estrogen doesn't work for everyone, but for some it's> > been a big help. Some have successfully used diet, anti-depressants> > and Physical Therapy, etc. I'll try to dig up some info for you. Our> > group owner, Dee, is having trouble with her computer right now. But> > she has been a 'wealth' of info for us.> > >> > > Do you like the doctor you are seeing? Does he/she seem> > knowledgeable? You can always ask others if they know anyone who> > treats v. pain in your area. You will

learn a lot from this> > group....just keep in mind that sometimes the group is really active> > and at times a little slower. Just keep posting, though... best> > wishes, ~Chelle> > >> >> > > >>**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, Thanks for your cooperation! *****