S.C. Age 21 – Melbourne

I am a 21 year old girl who was recentlymdiagnosed with endometriosis. To top it all off, at 19, I was, diagnosed with Vulvodynia.
It all began when I was 13, I had just gotten my period and for the first time tried to use tampons. At first it was quite daunting and it hurt, A LOT! However I thought nothing of it and just decided never to use tampons again. It wasn’t until I started university that my friends convinced me to try using them again, it still hurt and I got to the point where, in order for me to insert it, I would have to lay down on the ground and try to relax myself as much as I possibly could. It still hurt.

A few months later, my boyfriend and I first attempted to have sex. This was one of the most excruciating experiences of my life. However, again I thought nothing of it and told myself it’s just “first-time jitters”, it hurts for every girl. So we tried again…and again and again to no avail. My boyfriend was the one who told me to go and see my doctor because something just was not right. So I did just that. I am so grateful that I decided to go and see her because she was the one who first diagnosed me with the condition. However, as I wanted to go and see a female gynaecologist, I was put on to the “second-best” option. I was told to try three different types of anti-depressants, in which I was quite confused about because I thought to myself I’m not depressed and I don’t think my vagina is depressed! But still I tried them. It was not a fun experience; I gained weight and felt lethargic everyday. I also was feeling very down (funny that as they were meant to be ANTI-depressants!). I also went to see a dermatologist, who did nothing, a psycho-sexual councillor, who was very good but I just was not progressing, and finally I went to see a physio who specialised in pelvic floor exercises, however it was not working.

Finally I got referred onto Dr Ross Pagano, who is the “guru” in vulvodynia. He told me it is not a neurological condition, as the other specialists had told me and that it was not all in my head, but it is a physical chronic pain condition. He then referred me onto Marek Jantos to try bio-feedback.

At first the progress was slow; however I then started to see an improvement and was beginning to gain confidence. It wasn’t until I went to Adelaide for some intense treatment with Marek, that the treatment really took effect. After the first session I already noticed a huge difference and by the end of the week I felt 90% better. One week later I was successfully having sex with my boy friend.

All throughout this experience I noticed I had a very low sex drive which almost non-existent, Marek mentioned that it is all related. Furthermore I also was experiencing irritable bowel syndrome, which again is all related to the vulvodynia.
I hope that for whoever is reading this that you don’t think twice about seeking help and having bio-feedback treatment because after all the experimentation this treatment was the only one that fixed me. I am much happier now and my relationship is much stronger with my boyfriend, as this condition was starting to come between us. Furthermore had I have not told my mum about what I was going through I would not have been able to do it all on my own. My family, my friends and my boyfriend have been fantastic support which has helped me get to where I am now.

My Mother’s comments

My 20 year old daughter was diagnosed with Vulvodynia approx 18mths ago. We were “lucky” that her GP diagnosed her immediately and then referred her to a gynaecologist at our request. Then commenced the run around of various specialists whilst eventually trying three different drugs (Endep, Allegron and Epilim) with no improvement. As a mother (and also midwife) it was upsetting to see my daughter struggle with this condition, not improving and then trying to cope with the side-effects of these drugs. At the same time she was being treated for Endometriosis and all that entails. All I could do was offer as much support and encouragement as possible whilst trying to remain positive.

She is extremely lucky to have a very supportive partner (and parents!).
I also found it difficult not being able to share with anyone her condition as it so misunderstood.
Eventually Dr Ross Pagano referred her to Marek to try Bio-feedback before considering surgery as a last option.

At first I was sceptical that the treatment with Marek would work as I knew so little about it. She made slow progress and it wasn’t until we travelled to Adelaide together for intensive treatment that significant progress was made. Once again I was hesitant as the cost of the trip and treatment had to be considered. However S has had the most wonderful results after her Adelaide treatment and we will always be so grateful to Marek. At all times he was extremely professional and caring.

I actually sat in on a couple of her treatments and was most impressed at how dedicated he is to helping these girls. His treatment makes so much sense, I cannot believe it is not more widely practiced. Best of all though IT worked!

- Mother (Midwife)

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