What worked for me - slow and gradual

julie.barrett1 said 5 days ago
I was diagnosed with vulvodynia in June 2013. Being a researcher, I did much research, tried various self-help measures saw a gynochology consultant who put me on traditional medicine, i.e. 20mg Amytriptyline and topical steroid cream, daktacort - this helped for a while and I went from severe pain to mild discomfort over a few months, then I had a Pap smear (that I had already put off for 6 months) and Pow! I was back to excruciating pain and it was stubborn. Any creams suggested by the gyno just stung like hell - only coconut oil soothed. Then I saw a dermatology consultant who specialised in vulva health and she suggested things that she had found worked for her patients: western acupuncture, McTimony chiropractic, pelvic floor exercises, manual desensitisation and, more traditional, upping the amitriptyline to at least 50mg (I could only do this very gradually by 5mg a week). My GP also suggested a topical Gel especially developed for vulvodynia in Italy called Saginil - not available in the uk, but you can buy it online from the manufacturer, Epitech, paying by PayPal, which I have done so several times and it comes very quickly - very expensive but worth it - the first night I tried it I woke up feeling an appreciable difference in pain level. The gel worked, but it was gradual, so I started my own pelvic floor exercises, manual desensitisation and tried the acupuncture - what a difference having a few needles with an electric pulse passed through them made to my life. I believe the manual desensitisation helped a lot too - I had to rub the painful area every day (with coconut oil or a very plain ointment such as Diprobase), starting very gently and only a couple of strokes, slowly building up the duration and pressure day by day, to get the nerves used to accepting touch as touch and not pain. From then on it was a steady progress to being pain free within a few months. I was determined and I took everything gradually, building things up slowly, for example exercise aggravated the condition, so I started by just walking a very short distance and gradually increasing the distance a little bit at a time - as with the desensitisation - slow and gradual. Sitting aggravated it too (I work on a computer most of the time), so I knelt on my chair then got a post birth cushion (a cushion in a ring shape with a hole in the middle) to sit on. It requires a lot of patience and self restraint (I had to give up my beloved belly dancing), it takes a long time - you will not just wake up one day completely pain free; the pain will very gradually subside and there will be blips which can get you down. My consultant dermatologist told me she was very impressed by my restraint - many of her patients will just suddenly go for a 10 mile walk or have intercourse which can send them right back to where they started with the pain. I am happy to report that I can finally enjoy penetrative intercourse with my husband again!

One thing I have learnt from my research is that every woman, every case of vulvodynia is different - the causes differ and can be due to multiple factors and what works for one person will not work for another. One thing my dermatologist said was it is worth going all out and trying all to can to find what works for you. Some things will make it worce - I tried many topical creams until the saginil (lignocaine, hyalofemme, steroids) and they just stung like crazy. I was very very reticent about trying the saginil and it sat in my drawer for weeks until I dared try a tiny bit on a very small area. However I was more than happy to try everything that could not do any harm even if it didn't work - low oxalate diet, various vitamins and other supplements, acupuncture, pelvic floor exercise, manual desensitisation. To sum up - try saginil gel if you can afford it (my GP has found it cures some women within a few weeks), try acupuncture (many people doubt this form of medicine, but it has been shown to work well for neuropathic pain, which is what vulvodynia is). The McTimony chiropractic method works well if the vulvodynia is due to a trapped pelvic nerve, but this was not the case with me(neuropathic pain caused by hyper reactive nerves triggered by recurrent and persistent thrush infections, stress, and chemical trauma from the thrush treatment). The pelvic floor exercises together with relaxation, manual desensitisation and vaginal dilators (those hard plastic things just scared me so I used one finger, then the two smaller singers, two larger fingers, tip of hubby's penis then penis gradually further and further in and LOTS of lube - "Yes" oil based or water based, with all natural ingredients and no nasties being the only lubes my sensitive skin could tolerate) - all these things get the nerves used to touch again and the vagina used to penetration again. The acupuncture and amitriptyline work together to dampen down those over active nerves.

Sorry this has been so long, but I wanted to share what I have learnt over these past one and a half years.