Has anyone gone through something like this? I am tired of worrying

[Mrsbmama]

I have polycystic ovary syndrome diagnosed over a decade ago, usually caused missed periods due to not ovulating and I suppose heavier periods when they did finally come (but nothing like I am experiencing now) I have two children conceived with fertility meds and had two c sections 19 months apart, they went great and everything was the same afterwards in terms of not ovulating or having regular periods.

In 2021 I started a period after a cycle lasting 100 days (the joys of pcos and anovulatory cycles) however it did not stop. I bled for 12 weeks and extremely heavily with large clots (SORRY) TMI. I was ambulanced to hospital twice because of this, given meds to stop bleeding and had blood tests and an ultrasound which found nothing, apart from my Polycystic ovaries which I already knew about.

Since this time my periods have been absolutely unbearable and I'm at a loss and mentally stressing out that something is wrong.
I have a period every 2 months ish at the moment (not ovulating) and I'm bleeding for a minimum of 10 days. I'm spotting before or after AF, im bleeding randomly when my period is over.

I had a smear last month which come back normal (the same as my previous and first smear a few years back) and my cervix looked healthy and fine also.

I'm starting to bleed heavily after intercoure with clots (today cd20) which is so not normal!!!

I suspect fibriods or polyps to be the cause of this choas, however my last scan in March 2021 showed no signs of either but my uterine lining was thick at 10mm (they suggested if it was just 1mm over they would need to investigate?)

I've asked my GP if it could be possible that I have endometriosis but because I don't get serious period pains (I get pain but not debilitating) it's unlikely.

I have another scan on the 28th of Feb, and my gp mentioned more blood tests. 😔

Just to add*

On my first scan when my uterine lining was 10mm I had already been bleeding heavily for 11 weeks.

I was wondering why the GP has not seemingly referred you to a gynae?. Its no point whatsoever in the GP ordering further blood tests, you need a referral (and with that up to date internal scans). Any test done over six months ago should be discounted, you need up to date test results. BTW the internal ultrasound scans I had showed neither polyps or fibroids either

I would be asking a gynae straight out if they think that endometrial hyperplasia is a possible cause for all this.

What I learnt was that my progesterone (too little of this hormone due to PCOS) and estrogen levels were rising and falling like a rollercoaster the entire time; this led to constant bleeding and clots. The only pill that stopped it was northisterone but when I ran out of this a couple of days prior to ablation surgery (this ultimately stopped the bleeding because the entire lining was removed) I started bleeding profusely again.

My gp is always so hesitant to refer me for anything 🙄 and I feel he is trying to blame this on PCOS and ultimately I have to just put up with it!

A diagnosis of endometrial hyperplasia would make alot of sense, and I will mention this at my scan on the 28th. It does worry me that I have been left for nearly a year without real investigation though 😓 I take tranexamic acid when my period comes which does slow down the bleeding but when I stop taking them the flow gets extreme again. He has prescribed me norethisterone recently but did not explain when i should take them I assumed the prescription was going to be more tranexamic acid 🤦🏻‍♀️

Thank you for your reply and sharing your experience! It is so draining when you know something isn't right but the professionals don't seem to take you seriously. When I was blue lighted to hospital the first time last year I was bleeding so much it was causing breathing issues and I needed oxygen, I asked for another scan at the hospital but they ignored me put me on a drip with tranexamic acid and sent me home.

It's really scary sometimes especially the size of the clots.

If your GP is this unhelpful I would change GP practice or at the very
least see another doctor within it. Complain to their practice manager about their apparent lack of referral to a specialist. You should not have to put up with this at all!!!. This does massively affect your quality of life and confidence (not just to say underwear and pyjamas); I was unable to go out of the house for any longer than 30 minutes as the bleeding was heavy with clots and seemingly without end.

Before being prescribed northiseterone I was taking tranexamic acid tablets (prescribed by a GP) but those did not work either. I ended up phoning my local private based hospital for a gynae appointment and was seen a couple of days later. An internal ultrasound showed thickness of lining.

Do you have a female doctor at your practice who specialises in women's health? When I saw mine for period related issues the difference from the previous male gp was like night and day.

I have looked into changing the GP practice however in my area apparently this one is the better of them all, so I stuck to it and just kept going about the same issue in hopes they would take more more seriously. My husband has suggested going private just to speed things up so after this scan if nothing more is done then that will be our next step (I'm keeping everything crossed this scan will give me some closer and possibly a referral 🙄) especially if my lining is still thicker than normal. I'm presuming it is still maybe worse than before, the bleeding after intercourse is a new thing which was very concerning.

@MyDarlingWhatIfYouFly I don't believe there is, I had an examination at the end of last year with the GP and a nurse who I expressed my concerns too but they could only sympathise with my situation no real offer of help. At that appointment they suggested everything felt normal and I asked my GP to refer me for an ultrasound and he said I had to wait a few more months (hence this one being now 🙃)

I had the same issue with a complete separate health concern a few years ago where I visited my GP more than I can count on my hands and I got a referral after 7 months of suffering and misdiagnosis.😳

Il update this thread on my progress, thanks ladies for taking the time to reply 😊

I thought I'd post a update -

I have not had any more bleeding since 8th Feb, which did concern me as it was after BDing and ALOT. so I'm less anxious because that hasn't happened since, however my ultrasound appointment has been cancelled for Monday due to staff sickness and reschedule for 28th March 😳 so another month to wait now for any answers. Of course this leaves me dreading another mental period. Not MUCH of an update haha!