Jennifer’s story
It is now 19 years since I have been able to have sexual intercourse due to “my condition”, this is my case history to date.I am now 60 years of age and up until 1994 I was able to have normal intercourse, my sex life was excellent. We had no children, we had retired early and about to fulfill our dreams of travelling the world.
1994 after normal sexual intercourse with orgasm I encountered unbelievable heat in the genital area like a “blow torch”.The heat persisted for 2 years, 24 hour a day, some days pain like a “red hot poker”. Cold baths and ice packs were the only relief. Sleep became a big problem.
Since then sexual intercourse has been too painful as the skin is too painful to touch even with cotton bud, toilet paper, skin contact, cream. I could not wear underwear, etc. Examination and skin contact of any kind was painful.Creams, vaginal pellets, urine etc. caused stinging and burning.
We have been told by many, many doctors and specialists that it was “all in the head”, “an excuse not to have sex,” “to get over it and put up with the pain”, “to forget it”, “think of England” ” and “it’s a lost cause,” or “try anal,” and my husband was told to “get another woman.” There was no end to the insulting, tactless remarks.
We have been to so many doctors and specialists and Chinese and alternative practitioners seeking help – tablets, creams, anti-depressants, herbs, potions, acupuncture, hypnotherapy, you name it.
We have been told it was dermatitis, psoriasis, immune, hormone and mental disorders and vaginal atrophy/dysfunction.
It has been 19 years trying to find a cure for my so called “burning vulva” condition with no cure. I became a prisoner in my own home with no sex life, daily activities, holidays a thing of the past.
The only time I have been free of any pain, burning and stinging has been when on morphine, nothing else can give relief.
In 1994 I was persuaded by doctors and gynaecologists to have hysterectomy with the promise “it would fix all”, unfortunately it did not.
1995 a colposcopy was finally done and showed HPV but no warts (I have never been sexually promiscuous and have had with only one partner), no treatment given.
1995 suffered nervous breakdown due to condition.
1996-7 treatment by Chinese Professor with acupuncture, herbs, massage, diet, etc. Condition improved 50% only after 2 years of treatment. Professor always said “trapped nerve causing burning”.
1998 treatment by another Chinese Professor in Brisbane. I endured painful acupuncture in the vagina and drank the most vile potions and took lots of different herbs, but all to no avail – “just keep using the ice water treatment”.
Since 1994 I have had three bad relapses lasting 6 months each time.
1998-2011 had given up on any cure after being told “nothing they could do for me just keep sitting in ice cold water every 2 hours”.
2011-12 started searching again (with Bettina Arndt’s brilliant help). I saw new Gynaecologist who thought I had vulvodynia and prescribed Endep, unfortunately had bad side effects, then was prescribed Gabapentin. Both drugs used to suppress “nerve endings”. Physiotherapy was also suggested to relax “pelvic floor” muscles, unfortunately the exercises caused more burning and stinging – “tightening not relaxing”. Unfortunately medical professional’s view was it could be fixed overnight, however, after 3 months on Gabapentin said “are you able to have intercourse yet?” – after 18 years! When told not possible yet was advised “oh well just have outercourse then”!!
2013 New Gynaecologist advised increasing Gabapentin dosage, the burning and stinging and painful skin contact still persisting. Seeing new physiotherapists for specialised pelvic floor problems. Both advised “chronic problem it will take time, maybe be trapped nerve”. Both agreeing quality of life first, get rid of the burning and stinging and then look at intercourse if possible.
We cannot believe there is no diagnosis yet alone cure for my so called “condition” after all this time, surely I am not the only one. We are still young and hopeful that we can resume a sexual relationship. We have not given up.
Note from Bettina – Jennifer is soon to travel to Sydney so that Professor Thierry Vancaillie can investigate whether pudendal nerve problems could be causing her continuing pain.