Rose’s story – mystery pain

I live in Far Nth Queensland and my sister has sent me your recent column in the Sun-Herald. It took me over 5 days to collect myself to write to you. I think you would call it PTSD.

This is a letter of thanks for bringing into the open these medical conditions so often suffered in silence. I suffered “something” down there for over 13 years from age 21 to 34. I am now a 50 year old married female. Those lost 13 years should have been the best years of my life but instead were years of physical torture, mental breakdown and financial chaos. Usually I was treated for constant candida due to the raging red, swollen vulva but there was no definite pathology finding and the symptoms never resolved. I never responded to medication of any kind but endured the symptoms with various intensity.

The symptoms commenced some 2 years after starting the birth control pill. But even two pill-free years later nothing changed. I have a good husband and we have been married 27 years. Upon marrying we knew that we had infertility problems but after some hormone treatment we were jubilant to be expecting a baby. I have one beautiful daughter now aged 24 yrs. That is our little family of which I am ever grateful for.

During my “medical condition” I had supportive sisters, mother etc all reasons to live and push on. But what I didn’t have was the ability to let anyone know that I was in excruciating pain – yes, like broken-glass sensation. Overwhelming, burning pain almost unable to walk but I never took to full-time bed as I willed my brain to numb the pain. I could not entertain the idea of defeat as I was the bread winner of the family. I persisted with work in administration and some of my lunch hours were spent soothing the vulva with various methods. So often, I wished I could reveal to people why I looked, or felt, or acted like I did, or made decisions as I did! All a waste of mental agonising because it just isn’t an issue like having a bad back or frequent headaches where there is sympathy, empathy or recommendations discussed. My self esteem was already zero and I was not even able to lie about my “imperfection”.

I sought help by telephone, mail, travelled on rare rostered days and annual holidays. I found insensitive doctors, nasty male doctors, pain-inducing blase doctors, wonderful caring doctors, “at their wits end” doctors, “never seen anything like this” responses, “all in the head” responses. I succumbed to depression, mental breakdown, medication (good and bad) and finally “real thoughts” of suicide.

I sought out naturopaths, pharmacists, medical people, dermatologists, and gynos from all over Queensland leading to more desperation, lots of expense and no outcome. I wrote and sought out “the girl who lived in a bubble” CBT successful consultant. After my two day visit I had a 10 reprieve. When the condition returned it battered my mental health severely. Was I making up this condition? Was I to blame?

For the nine months of my normal healthy pregnancy, my female region had a continuous sensitivity and needed a light pad for the discharge. My caring gyno advised that maybe when I had birth maybe this medical condition would cease and my body return to normal.

This was 5 years into my pain saga. Sadly the condition didn’t change after having a healthy birth and a healthy baby. In the next 8 weeks after the birth I was diagnosed with postnatal depression and put in hospital. This period was the most sorrowful of all. I felt the most misunderstood human on earth. My daughter was the light of our lives and the reason to stay alive – it was my hope that had just died. I returned to work 10 months later.

Seven years later we chose to buy a small business and move about 30 minutes away and build a new house beside the business. We had had a sudden death in the immediate family, loss of business venture, builder go bankrupt, etc. Despite these dramas, the pain symptoms started to have some time off. Over the 6 months there were weeks of health and then a normal response to any supposed candida bouts using cream and pessaries. The physical symptoms ceased but the mental vigilance for the slightest twitch, sensation or negative mental thought took longer.

Infrequently I sometimes indulge in grief for all those “lost” years. There have been soothing positives, I have a husband who upheld his “in sickness and in health” promise, and a daughter I have seen grow up. I have a very deep understanding of mental health issues, relationship issues etc and have done enormous amounts of personal growth education.

Whilst I found your article upsetting, it was so relevant and significant to me. I thought I was the only person in this world who lost a part of her life in this silent, painful way. My medical condition does have an explanation and it wasn’t my fault or anything I did but a real complicated condition suffered by females. I have read your contributors letters and I now belong to a group of courageous women who need each other. It is important to educate the community but most importantly past and present sufferers you are not alone. I hope that in each of our stories there may be some positive connection for the reader. Thank you, Bettina, for being the conduit to a new beginning for past and present sufferers.