The following is actually an email that was sent by one woman in our group to a new member. It gives you some insight into the writer’s story and also gives you an idea of what you might expect when making contact with the group…
Hi Tracey (the recipient’s name has been changed)…
I am 44 years of age and live in the South Island… I also have POF. I relate to everything you said in your letter of introduction. I started developing erratic periods at about 19/20 years of age and was told officially of the diagnosis when I was about 23. (I had in fact had bloods taken two years earlier, which of course were abnormal but were not seen and so never told to me, until I went for the same old problem two years later. I think the GP probably just did not quite know what to do). Any way I then got referred to an endocrinologist and a gynecologist. In those days one had to have an ovarian biopsy for diagnosis and I managed to endure that. I too was put on the various medications to boost my oestrogen levels and in retrospect they did make me feel better.
The hardest thing however is the emotional thing. I am a little of an internalist and had only told my mother, my sister and one good friend of my diagnosis for 20 years. It would have been fantastic if I had had someone else to talk to at those times of diagnosis etc . I must admit to having felt very very alone. In the last few years I have told a few more friends.
By this time all my friends were having babies, and whilst I was not in a relationship at that time, I was extremely envious of them all and probably a bit depressed. I threw myself into many other things and took myself off on holiday overseas for six months which really helped me a great deal.
I then got a computer and found the USA POF web site and it was through the organisers of that site that I contacted Dr Shelling and offered blood for his research. I spoke to one woman with POF from Auckland a few times and that was helpful. About two years later they contacted me and told me of a woman living in the South Island with newly diagnosed POF and we met. We were so in need of talking to someone that we talked for six hours. She was 20 years of age and by this time I was 39.
Then a year or two later Dr Shelling informed me of a few other people getting together to form a group and so it began. The first meeting was in Taupo a few years ago and then 2005 on the Kapiti Coast. It has certainly been very helpful meeting up with other women, after so many years in “diagnostic isolation”, and I think/ hope I have been able to help some of the others. Of course everyone is at different stages eg some have had children and then had an early menopause etc and so their concerns can be different. There are a few of us, like you and me who were diagnosed at a young age and have no children. Our needs of course are very different still.
I have endeavoured to keep my health good and followed recommended advice for those of us with POF and took HRT . I stopped it when I was 41 as I was having a few other health issues at that time.
I do hope I haven’t rabbited on for too long but do hope you find some comfort in knowing you are not alone.
Maybe we will see you at our next get together.
I look forward to hearing from you.