For those of you who are interested, I can update you on the latest in the hormone saga!
If you don't know the story so far, click here to read about where I'd got to last year and then come back.
So it now turns out that it might not be straight forward perimenopause afterall! After months of very little improvement and on a waiting list for gynaecology, I recently had an appointment and this is how the conversation went...
Gynaecologist: "So you've had symptoms for 10 years? Early thirties is very young to be perimenopausal".
Me: " Yes I know, but they started very soon after I had my second child and have become progressively worse over the years".
Gynaecologist: "Oh that's interesting, did you bleed a lot when you had your child?"
Me: " Yes. Retained placenta, post-partum haemorrhage, general anaesthetic, lost 1.5 litres of blood".
Gynaecologist: "Has no one ever mentioned 'Sheehan's Syndrome' to you before then?"
Me: "Errrr No".
Just like that, he may have diagnosed the problem! So Sheehan's Syndrome is when the blood supply is reduced so significantly and suddenly after childbirth that part of the pituitary gland dies. This is turn affects all of the hormones that it controls, which puts the body totally out of whack and unable to produce what I need to function! The main hormones that are affected are also those during perimenopause and menopause, hence my symptoms and my blood test results showing no oestrogen or testosterone.
The treatment is hormone replacement therapy so I am continuing along this road and because I am now seeing a specialist, I am able to access more of what I need. With this sort of treatment, it can frustratingly take time to take effect, but I am starting to see some real positive difference in my symptoms...finally!
There may still be work to do, so I'm on the waiting list for endocrinology who will hopefully be able to provide a definitive diagnosis with an MRI scan, to see the extent of the damage to the pituitary gland. As well as investigate any other hormones that may need replacing. If indeed, that is what is causing the issue.
It's important to me that if it is Sheehan's Syndrome, I get a diagnosis because treatment is for life. Therefore, I need to understand the long term effects and risks, and I also don't want to have to fight for the rest of my life to get the hormones I need. We all know the struggle I have had over 10 years just to get to this point, as well as other women having to fight for the hormones that they need to function in their every day lives.
By sharing my story, I hope that it has in the very least raised awareness of the effects that hormone defficiency can have, as well as bringing awareness to a rare condition that I certainly had never heard of. For those interested I will keep you posted, althought the current wait for Endocrinology is 12 months!
Thanks for reading.
R x