CAH article [Archive] - Intersex Community Forums

Fee

02-14-05, 04:48 PM

Thanks Jolinn and Betsy for posting those CAH links. Melissa Cull is someone I have spoken to by telephone re my possible CAH status and Dr Conway is one of the endos I see.

Problems with diagnosing have arisen as a result of all the complications after the C Section birth of my daughter in 1998. Unfortunately, this also took place at UCLH (The Middlesex is part of this group of hospitals) and the obstetrician concerned works closely with IS patients, but has to date not been willing to meet me to discuss what happened. With deteriorating health, it has been left to me to work things out for myself and to fight for my right for answers. I am now getting clinical help from the team at the Middlesex, but it has taken a very long time (almost 2 years now since I first saw Dr Conway) having seen numerous other endocrine and diabetic doctors in London, to find out exactly what is going on for me 'naturally'. I joke that I have been to every hospital in London in fact, and I can count at least 5 professors in the field of gynae/endo who have been my consultants...lol. I know I desperately need HRT again (they took me off Yasmin some time ago and I've been on phytoestrogens which haven't really had much effect). My body feels like it's around the age of 70....and as one of the things mentioned to me was that I might have had an early adrenal development....this is probably not far from the truth. Whilst I have a great deal of respect for Dr Conway and his team, I do still feel a bit abandonned, on a clinical level. I suppose no-one wants to own up to the fact that my previous diagnoses could be wrong, or that I have indeed had important information about my body withheld for SO long. While Melissa Cull has offered me information, and whilst the CLIMB CAH Support Group have helped a bit too, as has the Pituitary Foundation

http://www.pituitary.org.uk

I have been left in limbo-land for a very long time, and it is this gap which I feel needs to be filled. Apart from BLO (and as I understand it you are mainly focussed on IS conditions) there is NO support for people with endocrine conditions until they have a diagnosis...it is only then that condition-specific groups can be accessed. I feel a group is needed to help those in the throes of getting a diagnosis, because believe me this can take years, which can then refer on to the relevant 'helping' organisations such as those already mentioned, which can provide uptodate information to patients about different conditions, as well as help them find the right doctor. Listening/counselling support too would be beneficial as this has been the only way I have got through these past 7 years and I have had to seek this help privately, with the counsellors often having no knowledge/understanding whatsoever of the medical stuff. I would like to begin a 'Support Network for Endocrine Conditions' here in the UK....as so many conditions seem to overlap...eg., CAH is both a metabolic condition and an IS condition and it can also lead to pituitary problems such as an associated 'Cushings' Syndrome/Disease. Then again, with the internet BLO is global now, isn't it....I just want to do something REALLY worthwhile with my experiences in order to put some closure on what happened, and to get on and live the rest of my life with my 2 miraculous, beautiful children, who also incidentally are having investigations for endo stuff too, and will need help and support approaching adolescence in the not too distant future.

See ya,

Fee :wave1: