can you help me help my friend, and also to understand about egg follicles and low estrogen?

(3 Posts)
brdgrl Wed 28-Nov-12 01:38:43

My dear friend was told today that she will never have children. The doctor told her that she has "no egg follicles" (based on an ultrasound) and her estrogen reading was 5. She still has periods, but the doctor told her that they were not 'real' and that there was absolutely no chance of her conceiving. They are doing some more tests to check for the cause, but were vague with her about the specifics, only indicated that it could be a sign of some immune disorder.

She's gutted, as was planning to start 'trying' this summer. She is perhaps in denial about the diagnosis, and insists that they must be wrong. It sounds like they were pretty awful - they just told her this news and gave her a leaflet for a fertility clinic and didn't counsel her at all or talk about other health issues - I thought for sure they'd have talked about hormone therapy? (She wasn't there for fertility concerns, just for a general checkup, and she's really in shock about it all.)

I'm worried as a quick google search brings up ovarian cancer amongst other things...I'm also confused as the Mayo Clinic site says that "as long as you're having periods, pregnancy remains a possibility" but the dr she saw ruled it out altogether. I suppose I am also angry because they seem to have treated her like a womb, rather than a person...No discussion at all of the impact on her own health, only on the infertility aspect, IYSWIM.

I'm not really sure what I am asking...but I am confused about the "absence" of follicles, I thought that it was more that one could have 'empty' follicles rather than no follicles? ALso about the 'false periods' point...Maybe I am just looking for something hopeful to say to my friend.

Thanks.

sausagerolemodel Wed 28-Nov-12 02:09:12

Disclaimer : not a doctor, only ex academic. Please don't take this as fact but it's my best surmise from reading.

quick search suggests this is POF (premature ovarian failure) which is not a disease but a syndrome I.e. it can have many causes. It does not only apply to premature menopause but that is one cause. An autoimmune reaction is another. Where no follicles are seen it is thought that this could be due genetic mutations which mean the follicles do not develop, but otherwise have no bearing on her health. But there are many genes involved in this pathway to follicular development and nobody knows where all the possible mutations might be, hence, possibly the hand waving and lack of clarity. I have looked at one paper though which seems to imply that you can't say 100% if follicles are def absent by ultrasound. It ought to be verified by biopsy.

humrep.oxfordjournals.org/content/19/11/2555.full#ref-list-1

That said, with the combination of low oestrogen and ultrasound and docs opinion suggests that she probably should not get her hopes up.

Can't see on reading why she shouldn't be able to do donor egg ivf though. She can still be a mum, if what I have understood is correct. I am sure it isn't cancer. They wouldn't not say anything.

brdgrl Wed 28-Nov-12 17:55:24

Thank you - that is very helpful.
She is really not in a good place at the moment and I am afraid is pinning too many hopes on them having made a misdiagnosis or it somehow being reversible; I think she needs more information so she can understand what they are telling her, but also so she won't see it as the end of her life. sad

Thanks too for the reassurance about not being cancer.

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