Pcos, irregular bleeding, liver like clots, non stop spotting, ttc NIGHTMARE

[ethelinEd]

Apologies for the brain dump in advance but I need to rant somewhere

Some background: I’m 29, was diagnosed with pcos when I was 23/24 due to sometimes experiencing irregular cycles. Despite being diagnosed back then, I still had a somewhat regular cycle, as in I’d know when my period was coming, had all the usual cramps and dull aches. First two days were always heavy and they’d lighten up and would last roughly 5-6 days. I was also in good shape despite not always eating the best, I was a lot light lighter than I currently am.

Fast forward to summer 2020, my periods just stopped altogether. I put a significant amount of weight on during that time and know 100% that impacted my periods ( added with lack of exercise/fresh air as was working from home and pretty much on my desk most of the day). It didn’t bother me then, quite liked not having to worry about blood.

However, now that I am TTC’ing, I’ve realised what an imbecile I was. Our periods are literally an insight into our overall health, and I only started worrying when I wanted to have a baby- how sad. From 2021 to Sept 2023, I’d say I was having a “bleed” of some sort every 2-4 months. The “bleed” would always be dark brown discharge/blood and never the usual heavy dark red blood I was used to having. They’d also barely fill a bad which was odd.

Oct this year I started experiencing more normal looking volume of blood, however it was still mainly dark brown, with tiny amount of red. End of jan I had a 2 week period where I was literally gushing blood at some points, this was more of the colour I was used to. Thought hmm maybe my periods are finally sorting themselves out but nope. It lasted around 12 days. March I had 1 day random bright red bleed, April, again around maybe 2-3 days of brown/hint of red blood barely needing a pad. Around May, I started taking inositol, and I experienced for the first time dull cramping, then experienced gushes of brown clots for around 2-4 days.

Then June came, and that’s when I experienced the weird liver clots ( tmi sorry!). I had the faintest of dull aches, but would have regular clots and sometimes could feel them sliding out. Some where definitely bigger than a 50p coin but they weren’t massive like some of the threads I’ve seen on here. Funnily enough, the bleeding didn’t really fill up pads, and sometimes were a bit scanty in nature. This lasted for 11 days ( 3-13 June). I started testing for ovulation to see if I’d get another bleed, but it was never high enough. Pre mom app predicated I’d ovulate on the 21st, but my LH highest reading was at 0.47.

So now we’re in July, and I experienced brown stringy discharge which started on the 4th July. Around the 6th I started experiencing more red bleeding, with small-medium sized clots ( only mostly when I wipe). Was consisntly getting the clots almost everyday until it was coming to an end. Or so I thought. Although the “period” came to an end a couple of days ago, I’m still experiencing light red spotting with watery cervical discharge, and sometimes very tiny clots in the toilet bowl after I go for a wee. I had an internal scan on day 3 of this supposed period, which showed nothing remarkable. Apparently no “pcos” was found, my lining was at 11mm on what would’ve been day 3 of this period which makes me think it isn’t a period at all but some sort of breakthrough bleed. Only thing noted on the internal scan was nabothian cysts ( which is weird as I had a smear test in March and wasn’t picked up). Just finding it weird that there’s some sort of blood tinged mucus whenever I wipe despite having this fake period for basically 2 weeks!

I was convinced I had fibroids or endometriosis but nothing has come up! Still waiting for a gynaecology appointment and trying my best to lose weight in the meantime. Has anyone experienced this ongoing spotting, do I push back for more scans? Literally feel like I’m at a standstill. Do you think the inositol is trying to regulate something or is this what’s causing the weird liver like clots? So confused! Would appreciate any insight. Women’s health just isn’t considered a priority and it’s fudging sad!

hopeful bump😬

Another hopeful bump!! Honestly would appreciate anyone’s experience. It’ s the constant rose/light red/pinkish coloured discharge that’s been there for at least 3 days now with occasional tiny clots when I go for a wee that’s worrying me .

Perhaps because of the lack of volume of my periods it’s taking extra long for everything to come out?

You may not be producing enough progesterone to naturally shed all the uterine lining.

Ask your gp for hormonal tests.

That’s kind of what I thinking too in regards to the progesterone. I did ask my gp to prescribe me some progesterone pills, however i was told as I’m having some sort of bleed every 3 months it’s fine? I was told since I’m waiting for gynae, I shouldn’t take anything which can give them a “different picture”

I also had hormone tests done last month. My Lh is higher than my fsh as usual but don’t think progesterone was tested? Not surE what picture it would’ve shown because cycles are so irregular and positive I don’t ovulate. I’m guessing lack of progesterone can cause constant spitting too? My ultrasound didn’t pick up anything alarming too but I still feel fobbed off somehow!

I was diagnosed with PCOS and endometriosis when undergoing fertility treatment.

LH being higher than FSH is par for the course when it comes to PCOS. There is often an excess of LH compared to FSH. Lower than normal progesterone levels (again due to PCOS) can cause spotting to arise too and I note you've had heavy bleeding too; again this can happen in some PCOS patients. Constant rises and falls of progesterone and estrogen can be behind this.

You certainly do need a gynae referral re the PCOS because this can and does interfere with trying to conceive. I would stop using anything like the premom app because its really not all that helpful and is next to useless for PCOSers in any event.

If periods are irregular the blood tests can also be done according to calendar days so the 3rd and 21st of each month to measure and compare LH and FSH and for progesterone respectively.

The cystic follicles associated with PCOS can disappear (so this is why they were not seen readily on an ultrasound scan) but are replaced by further cystic follicles. A normal sixed ovary is about the size of a walnut; a polycystic ovary can show a ring of pearls appearance to it and appear larger.

A gynae would prescribe progesterone pesseries if needed; they are not normally prescribed by a GP.

any other questions just ask

Thanks for that. That would make more sense as to why I’m still (lightly) bleeding. I know my hormones are out of whack, and the weight gain the last couple of years have only made that worse. However I also know it’s because of the very presence of pcos, which I’ve probably had since I started my period at age 15. I’ve had irregular cycles even when I was at my slimmest.

If you don’t mind me asking, how were you diagnosed with endometriosis and what symptoms did you have ? From what I’ve seen online, it’s rarely seen via ultrasound and you need some sort of surgery to get the diagnoses. Ive never have real pain when on my period, and although I have more clotting the past few months, I don’t even fill a pad even on those days when the clots are prominent. However I know this can still be considered heavy because of the duration of the period (10 days +).

My LH is always around 10 or 13 u/l and fsh is always a 6. I can actually attest to the ever changing presence of the mini follicles aka string of pearls as I’ve seen them come and go during previous ultrasounds.

I feel like I need to look at the bigger picture which is changing lifestyle habits and taking the correct medication/supplements as opposed to fixating on a weird cycle/presence of clots and blood. But it’s hard!! Re the progesterone, do the pessaries do the same thing as the Provera pill? Thinking to call up gp and ask for it a bit more assertively.

Thank you!

My main symptom of endometriosis was severe pain and lots of it leading up to and during menses. It also caused heavy bleeding. I also had pelvic pain and pain down my legs due to the sciatic nerve being inflammed.

Up till diagnosis I had plenty of internal ultrasound scans and none of these showed the endo present in my uterus, this is because the endo deposits are so very small. I had a form of surgery called laparoscopic ovarian diathermy, this is a procedure whereby the surgeon punctures the polycystic follicles on the ovaries with a laser. It’s not a cure and there is no one therapy or treatment that will completely eradicate PCOS. What this surgery can do is promote ovulation and in my case this happened. I became a parent as a direct result of this surgery. Your LH/FSH levels are very typical for PCOS: there is too much LH and not enough Fsh being produced.

Have a read of Verity’s website about PCOS and do not waste loads of money on supplements and the like. I would also refrain from using any ovulation predictor kit as these are a waste of time to use when PCOS is present. Some pcosers also find that following a low GI/GL (glycaemic load) eating plan of benefit and it’s more sustainable in the long term too.

The progesterone pesseries are sometimes prescribed by a gynae when the PCOS patient is pregnant. It’s completely different from provera which is used to bring on a bleed.

veritys website is
www.verity-pcos.org.uk

hth

Ahh that’s amazing to hear the surgery promoted ovulation for you!

Well looks like I’ll have a long wait before any further fertility testing is done by gynae. I’ve been waiting since December. Always torn between looking into private treatment and just giving my body a chance to heal naturally via food and exercise. That’s the impatient side of me that wanted a baby yesterYear!

Tbh I the reason I downloaded the Premom app was curiosity, but also to just note down my bleeds and see if there’s a pattern- which ofc is hard to pin down as you rightfully said. Thanks for also sharing the link, that’s really helpful.

Some private treatment is poor as well as expensive so you need to research carefully and ask lots of questions before parting with your hard earned cash.