i need help/advice - something!

i have pcos, weird bleeding (weeks at a stretch), miscarriage number 6 about 6 weeks ago. it's taken so long to get someone to actually believe me that something isn't right and get a referral to a gyne but finally got one

3 weeks ago i went for appointment with gyne - he did a biopsy on the day, sent me for blood tests

BT's mostly ok - one of the androgen levels way too high though - repeating test in case there is something wrong with my adrenal gland as well - if it's elevated next time, we will have to do more tests on that - NFI - but i'm guessing scans for hormone releasing tumor on my adrenal gland. great

biopsy results not BAD, but not GOOD either. significantly thickened endometrium with simple hyperplasia - could be nothing, could be precursor to further abnormalities (pre-cancer) - was a very small sample so now i have to have a full hydroscopy (i think that's the word - camera in uterus) to make sure there is no cancerous or pre cancerous regions, and a full d&c. bit anxious, especially considering he's marked it as semi-urgent

the bit i need help with - we want more kids. we can't afford AC, so we're not trying but not preventing (ok, so we're kinda trying, but not focussing on it like we did before E). the gyne is concerned about the degree of thickening and hyperplasia so he wants me to take provera (progesterone) 3 weeks on, one off, and hopefully have it reduce the thickness and give me a more regular AF (current about 6 weeks, would reduce to 4 weeks)

but, if i'm taking provera at the same level for three weeks out of four, with no estrogen support, how the hell am i supposed to have an ovulatory cycle?? i don't get it. i don't want to be hormonally "controlled" to the point that i can't have more kids - yeah, we're not trying, but we're not PREVENTING - and this is what it feels like

HELP! i'm a frikken wreck!

Androgen levels being high doesn't mean tumour - could be the brain is over-stimulating and it can be managed with drugs. Or could be a temporary thing and taking hormones will just remind your body what it is supposed to do. Or it could have been to do with where you are on your cycle - I know my hormones are a bit screwy and peaks can be too high.

Provera. I was on the mini-pill and was shockingly lapse about it: I took no pills for 1-2 weeks and no period. Took months after I came off it to get periods again. So don't know if that's the best option. And there's nowt wrong with 6 week cycles! I conceived Liebs on 6 weeks cycles.

Maybe the minipill is just to get your uterine lining down, so a short-term measure? I know it isn't ideal, but if it's for just a few months it isn't as bad as it being a permanant feature of your life.

BG, did they say how thick your endometrium is? I have hyperplasia too but provera treatment has never been mentioned. Could baby aspirin be used as an alternative?
Increased androgens can be a sign of diabetes or insulin resistance...

I hope you get answers and still get to ttc (not that you're trying ;) )

n2l - i had a gtt again and he reckons nothing amiss there - but the insulin tests were not done so i don't know that it was an accurate representation of the situation - not sure how thick the endometrium is - i don't think it's a reflection of an actual measurement (though i know it was thicker than normal) - from the way he was talking it was more about the density of the cells in the layer.

i have done uni studies in all this stuff, but it's so many years ago and i don't want to go reading up with Dr Google because i CAN interpret the info that is in med-speak (lol) and i don't want to freak myself out any more than i am already

TFB - it's not a mini pill - it's just progesterone - i don't get how it will work though - he said the aim is to reduce the density of the endometrium to reduce the risk of it becoming cancerous. he didn't say anything about it stopping us having a child (and i said again today about not preventing) but given i know how hard it was for E, i can't see how adding ONLY progesterone will help

arrrrrrrrrrrrrgh!

Sorry if this is abit out there for you but any chance you can see a TCM/acupuncturist or fertility naturopath?

I've been doing lots of reading lately about heavy metals, nutrition and hormonal balance, so I tend to skew down that path.

i'd LOVE to be able to do that tash - but at the moment, i'm having to rely on the public system - thankfully the gyne i'm seeing is one of the best in the area (rep wise) and the one that has chosen to bulk bill.

DH isn't working due to his eyes failing, and i'm only working part time (cos i need time off for all the crap going on in my life - it's easier to be flexible with days and swap them and still get paid, rather than taking lwop and making life difficult for us later due to poor work performance) - our budget is so tight i'd have to sell a kidney to do anything (and no one would buy it cos my body is so screwed up!)

When I was on provera recently, the GP explained that it would force a withdrawal bleed. So I had to take it for 14 days, every day. Then 3 days after I stopped taking it, the incredible bleeding started. You know that I ten to bleed for weeks on end as well, and that's actually why I went on the provera. So for 14 days I didn't bleed, and then I bled for about a week after the pills finished - big clots, palm sized :o It's like a chemical d&c, sometimes it's enough to clear EVERYTHING out so you don't need an actual d&c, y'know?

this is a permanent thing by the way he's talking Keike - and he said "regular light bleed" - i don't get why every six weeks is a bad thing - it's the prolonged bleeding that is a problem - not how often it's happening

and how the beep is it going to "help" us to have a natural pregnancy?

I thought the minipill was just progesterone? You can ask for alternative treatment, or say you're going to do this for 3 months and see if it helps but no longer.

i'm thinking i'll do it til we have post d&c consultation and then lay it on the line more about WANTING more kids and not wanting to be on anything that could impact that. i'm happy to do it every few months (initial suggestion) to bring on a decent bleed if necessary - but i'm not sure i want to be on it full time.

i'm petrified of the moodiness too - i remember being slightly psycho when i was on it before - i will go cold turkey if it makes me crazy - E deserves better than that

argh!! this is exactly what the mini pill is - i'm not going on ANY frikken contraceptive - argh! why would he say there was a chance of pg if there isn't - faaaaaaaaaark!

Oestrogen is what builds your lining before ovulation, progesterone maintains it after you ovulate, secreted by the CL until an embie takes over or until the CL dies then you get your period. Oestrogen and FSH also helps with growing that egg... So technically the increased progesterone supplements shouldn't affect ovulation... Is my understanding..

Best to ask your doctor for some more info - laymans info AND scientific info that other medicos might read or ask him to explain how your fertility and hormone levels are affected by taking more progesterone.

GL :hug:


Sent from my iPhone using Tapatalk so please forgive my spelling mistakes!!

i have had nasty reactions to the OCP in the past, so i went hunting through my journal to see what one it was that caused me to get really ill (doctors thought i was having a stroke) - didn't have to go far to find provera mentioned (knew i'd had it in the past) - i reacted really badly to it - not an allergic reaction as such, just triggered really bad anxiety attacks, mood swings - and the best bit - IT DIDN'T WORK! it was supposed to bring a visit from AF and didn't work at all!!!

getting to speak to the gyne again will be very difficult to clarify - hate that brain fade i get when i've had news i'm not expecting. i knew there was a chance somethign would be wrong with the biopsy, but i didn't believe it - it's thrown me for a serious spin.

I know you dont want to take it, but for others whoa re wondering, you definitely ovulate and can get pregnant on the mini pill, hence I have 2 kids not one.

did some more reading - mini pill tends to stop ovulation in about 50% of cycles - given many of mine are anovulatory anyway, i can't afford to have the occassional ovulatory one screwed up too

Just a thought, and I am not claiming to know heaps bout what you are going through but I do have PCOS and endometriosis. I know you said AC is not an option as very expensive (I hear you on that) but what about clomid? I am currently on it and Its not working (as in its still not making me ovulate yet) however, it is making my cycles shorter (I average bout 70 days) so if you took that it would be possibly assisting conception and hopefully would shorten your cycles even if you don't ovulate on it? I know its not a long term fix though :( just thought its alot cheaper than other fertility treatments.

Clomid is not good for your lining though...

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Just a thought, and I am not claiming to know heaps bout what you are going through but I do have PCOS and endometriosis. I know you said AC is not an option as very expensive (I hear you on that) but what about clomid? I am currently on it and Its not working (as in its still not making me ovulate yet) however, it is making my cycles shorter (I average bout 70 days) so if you took that it would be possibly assisting conception and hopefully would shorten your cycles even if you don't ovulate on it? I know its not a long term fix though :( just thought its alot cheaper than other fertility treatments.

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i have tried clomid several times in the past, and unfortunately it didn't do anything - 3 tabs a day (150mg i think) didn't make me ovulate at all.

my current cycle is averaging 42 days (been tracking it since DD's birth) so it's not THAT bad.

had an argument with my mum about cycles today - apparently me bleeding for at least a week (heavily) and up to 3.5 weeks out of every 6 week cycle is my body not bleeding enough in comparison to a "normal" 28 day cycle.

sigh - yes mum, i get that you're scared something may be wrong with me (try being ME!) but c'mon - stop grasping at straws and stressing me out MORE!

Im really sorry, this must be a really frustrating and stressful time for you. I hope the doctor can give you some more options.

I thought clomid was a wonder drug cause it worked last time on 50mg - yeah not working for me this time! about to start 100mg and see if that gets things working.

BG, on my 6-week cycles I had a 5-6 day bleed. Currently on 30 day cycles (eugh, too short!) and bleed for maybe 2-3 days.

So 3 week bleeds on a 6 week cycle should be more than long enough.

that's what i thought TFB - my iron reserves are JUST within the normal range - i don't need to add MORE bleeding to the mix and make it more of a drama! the whole point of this is to get me back to bleeding like a normal person, not the excessive bleeding i currently have!

sigh

i really did think i'd get a normal biopsy result - i was stressed but it was more general - i didn't think there would be anything particularly wrong - this sucks! so annoyed! i want to be normal for once (yeah, i know it's over rated, but i don't CARE - i want to be NORMAL!). i don't want to be constantly scared, i don't want to be anxious all the time! dammit!