J.M. Age 65 – Perth

Having suffered with vulvodynia for more than thirty years I fully understand the overwhelming despair and anguish it causes. How well I remember the misery of burning, stinging and gripping when passing a trickle of urine followed by strong contractions similar to the second stage of labour. That burning could last several hours and as for that dry vagina…. well, words fail me. One problem was that it sent false messages suggesting I needed to empty either the bladder or bowel when it was unnecessary. How many times I sat on the toilet in frustration and said to myself with great feeling “I hate you, crotch!” The severity ranged from mild discomfort to a stage where I felt reluctant to move at all and the desire to curl up in a little ball in the corner of the couch was commanding. The one positive was that I knew it would ease in a few hours and so I was able to keep telling myself “it will pass, it will pass”.

My symptoms often seemed to hit with a vengeance just as I lay down to sleep making sleep elusive and often disturbed. How many days I went to work on just 2-3 hours’ sleep then came home to the household chores. The problem was first diagnosed when I was 35 years old. At that time my children were 11, 8½ and 5 years old, my husband worked away from home much of the time, I had just gone back to full time employment in a demanding occupation that also involved bringing work home each night and, oh did I mention the delinquent dog that no-one else would have kept but we loved dearly for 16 years! I just did not have time for the demands of vulvodynia! I just had to put it out of my mind and soldier on.

Maybe, like me you have trekked around a variety of medical practitioners seeking understanding and relief from the symptoms but without finding any great improvement. My experience has been that gynaecologists are happy to have patients who are pregnant or trying to conceive but dump vulvodynia in the “too hard basket” and have no treatment to offer. As the years passed and I got older every doctor wanted to write a prescription for Hormone Replacement Therapy and see me on my way but I did not want to take HRT and they had nothing else to offer. In desperation I tried numerous treatments from chemists and health shops and even invented a few home remedies of my own.

One GP had suggested that the PH factor of the vaginal lining was to blame and I used some Acijel jelly which did relieve the symptoms somewhat. Unfortunately the symptoms were the same if I was too acidic or too alkaline so again I started trying to find out how to test and again no-one I saw could help me. Still looking for a test for PH, I ended up at a clinic in the local hospital where the doctor suggested the problem was vulvodynia and referred me to a physiotherapist who treats the problem. He also told me that the PH would not be a factor after menopause.

I made quite good progress with the physiotherapist working with dilators to stretch out the vagina but hit a brick wall when I reached dilator number 5. It took 10-12 very painful minutes to insert but I persevered for 18 months improving slowly but steadily with occasional “flare ups”. After one of the “flare ups” she suggested another treatment but required a doctor’s prescription for the medication. My GP was reluctant to prescribe and referred me back to the clinic at the hospital. This is when my tale of woe became a fairy tale with a happy ending because the hospital doctor sent me to Marek Jantos and I see him each month when he comes here.
Even when I spoke to him by phone to make the appointment he offered some advice that would make me feel more comfortable. At the first consultation he gently started to desensitise the muscles. This was uncomfortable but no worse than the symptoms and I then enjoyed two pain free weeks. I saw him two consecutive days in the second month and the desensitising was much easier. I enjoyed 2½ pain free weeks and was able to insert the size 5 dilator in 10 seconds and feel comfortable. How I wish I could have seen the surprise on my face as it slid into position. The improvement continued over the next two months and I have one last visit to come.

After just five treatments I am comfortable 90% of the time and if the symptoms start I can quickly say “oh, no you don’t” and use the techniques I have learned to fight back. What a delicious feeling the first time I was able to turn over on my side to go to sleep instead of having to stay on my back because of the burning sensation. I now sleep for several hours each night. Now the discomfort has eased I can improve my posture again instead of being partly hunched forward in an effort to gain relief. The moisture has returned to the vagina and I have been able to resume intercourse with my husband. Best of all, the treatment requires no drugs. When I look in the mirror I can see the tension has released from my face and can feel that other muscles in my body that were taut and painful have also eased off so my whole body is more comfortable. This is a remarkable achievement considering the problem had been firmly entrenched for over 30 years.