Hi cherry
I am sorry for you (and anyone) that goes through this shit. It is indeed an emotional bloody nightmare and some of the worst experiences of my life.
Bear in mind this was 20 years ago now, so things may have moved on
I was on the pill for years (ha! the irony!) and came off it at 23. No periods at all, no cycles
Got referred to an gynae who did initial bloods that showed flatlined LH (am assuming you know the abbrevs) and a high FSH, indicating premature menopause. Progesterone also flatlined, no ovulation.
This was a devastating shock at 27 and pre children, of course. Told to go away and investigate adoption or surrogacy.
However, I pushed to see an endocrinologist as I had a previously diagnosed underactive thyroid (treated, and within normal range). I have some medical knowledge so wanted to leave no stone unturned.
Saw the endo, who repeated bloods over 4 weeks instead of a one off snap shot. They revealed my FSH was not staying high and flatlined but fluctuating (indicating my ovaries were capable of responding to stimulation). The LH and progesterone was rightly dismissed as simply indicating no ovulation.
Had a few cycles of Clomid. Had a couple of miscarriages, so although that was very sad (and frustrating) told at least I could conceive. Had some more tests to check for reasons for recurrent mc (they usually wait until you have 3, but I pulled strings). All ok from that POV so told to carry on trying.
Next cycle of clomid...I had my healthy daughter. Waited 5 years until brave enough to consider trying again. In that time, there was something trying to happen...had a few light and half hearted periods so told to use contraception (more irony..)
When brave enough, took one cycle of clomid...had my healthy son in 2000.
Since then, those bastard periods have been ovulatory and getting worse as I approach my natural menopause < sigh > God knows why.
Have never had a proper explanation. My endo was very honest with me and said that slim women can tip over into knocking out the hypothalamus without being actually anorexic and some people have more sensitive hormonal feedback loops that can get buggered up more easily. That caused me some guilt and recriminations, for sure, as I have had periods of being controlled around food in my life. At that time I was 5ft 10 and 9.5 stone, so not very low BMI but borderline. I was advised to put half a stone on, which I am pretty sure helped and I have kept it on, so think of that what you will.
I also had some very small cysts on my ovaries that could have indicated PCOS, but because I didn't fulfil any other criteria they wouldn't diagnose me with the syndrome.
Anyway, this turned out rather long so sorry for that. Once I started typing, it just grew. I could type forever, actually....my sympathies massively go out to anyone trying to negotiate tests and treatments and still get on with day to day life and the insensitive questions from people who didn't realise how hurtful they were being. I wasn't always very successful at that.
Good luck everybody, I hope you get the families we all have hoped for x