oranges that must be so frustrating! What’s happening for things to have stalled? Can you ask to see another GP / get referred to a different consultant if they’re not willing or able to help you? Keeping fx they pull their bloody finger out!
oranges & gin thank you so so much: The support from you ladies is immense. I’m sorry to be hogging the group with my decrepit ovaries! It means so much to have somewhere to be able to talk about this stuff.
Re: the bloods and what the fuck we do now. I'm crapping myself, basically.
Consultant said it was possible there may have been a lingering effect of the pill, and wanted to re-do them. Because I was on a double dose (because of the interaction with my epilepsy meds) any effect would be magnified. Although as the pill suppresses FSH I would expect it to be lower coming off the pill, so terrified it may have gone up!! Although there’s some evidence AMH is suppressed by the pill even in the months after coming off, so maybe that might rise a little from ‘terrible’ to ‘slightly-less terrible’.
The FSH is so high and the AMH so low because my ovarian reserves have shrunk so much. In 2010 the scan showed 42 follicles (i.e. very much polycystic). My last scan showed 5!! Unfortunately I can’t produce more eggs to replace the ones I’ve ‘burned through’. The glimmer of hope I have is that a clinic in NYC which specialises in treating ‘burning out PCOS’ patients with premature ovarian ageing, say they’ve seen ‘menopausal FSH levels’ reversed when patients have started androgen supplementation.
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My testosterone was almost undetectable in my most recent bloods, so I’m clinging on to the hope that the DHEA I’ve already started taking may help reverse my menopausal levels of FSH. Will discuss with him whether testosterone patches or gel are a reasonable option to try, to see if they’ll make a difference. Which I’m desperately hoping they might!!
At the moment, our only option is to self-fund - so the new bathroom and the honeymoon are both off, and all our cash is going to project baby. Any cycles we pay for count towards our allocation of NHS-funded cycles, though I’m not sure if it’s possible to ‘hide’ cycles with clinics abroad. Because I’ve got quite a complicated medical situation already, my GP is the key link in the chain between the neurologist, pain doc and now the gynae (even seeing him privately everything still goes to the GP so it’s all on my records). If things were different, I would definitely go abroad as treatment is SO much cheaper and there are some brilliant clinics - like Reprofit, where Rosebud has been looking at, and Serum in Athens. But as DH rightly points out - and he’s the one who has had to call the ambulance when I was collapsed unconscious and turning blue while having an epileptic seizure (I of course have no memory, so fits are much more traumatic for him than they are for me) - if we leave the UK, then joined-up care becomes very tricky.
It ain’t the end of the road yet, it’s just that the journey is a fuck of a lot more expensive.
IF the DHEA can get my FSH down, that might bring me within the threshold of NHS funding criteria. We’d have to wait 3 years though, and my reserves are so depleted that the way things are looking, it’s now or never basically.
I’m def gonna push to at least try androgen supplementation: no reason at this stage to think he’ll refuse, just have to see what he says on the 3rd…