Please help me because the NHS won’t

[Draculaswetdream]

I have been bleeding heavily and continuously from my vagina for 40 days. I am 32, I have PCOS and my last episode of continuous bleeding was after my son was born in 2021 and I bled for 16 months non stop. That eventually resolved itself and I fell into normal cycles (35ish day cycles for me normally, period last between 4 and 7 days).

My PCOS does not cause continuous bleeding for me, it causes the occasional very long cycle and sometimes cycles where I don’t ovulate.

I contacted my GP 2 weeks ago and got a phone appointment with a phone GP service a week later which I attended, and he sent me for a blood test because I am anaemic. This blood test has confirmed I am severely anaemic (HB is at 8.1) and yet instead of thinking ‘shit we need to find out why and stop this woman bleeding’ the action plan from my GP has been to prescribe me iron tablets and leave it at that (I am already taking iron tablets unprescribed and have been for 4 weeks because I’m not an idiot and knew I was having a bad period and would need topping up. This was before the period didn’t stop). I also have trans something acid which is supposed to stop the bleeding but I have repeatedly expressed that this is not working to the GP’s.

Today, I very suddenly flooded through a pair of heavy duty period pants and a maternity pad (I wear this combination 24/7 at the moment) and ruined an office chair at work. Totally saturated it and left a saturated patch about 20cm in diameter.

I have been to the GP’s 8 times about heavy periods and twice in the last 40 days, and have not been offered any further investigations like a scan despite insisting this is not normal for me. They appear to be convinced this is PCOS related.

Are there any medical people on here who can advise me how to navigate the system here? It feels like they’re content to just leave me like this but I think something is really wrong with me.

That's just so worrying. Cold comfort but if it is cancer as long as it hasn't spread all should be fine. You don't exactly need you uterus.
Fingers 🤞 it's not though.

Have you seen the local press about Mr El Gizawe (possibly spelled incorrectly). I speak from personal experience when I say he was the only one in many years to help me and acknowledge the seriousness of my struggle

Yes I have, fingers crossed I come across him at some point!

Just updating this thread: still no biopsy results, but in the meantime I had an MRI and they’ve found some suspicious lesions on my liver. They thought it was none alcoholic fatty liver disease at first but it’s not. Much more concerned than I was!

Oh@Draculaswetdream you must be so worried. What's the next step?

Have been thinking about you OP. I saw your other post (I think you NC to post it but I did wonder if it was you). As Sugarfree23 said - what is the next step? Presumably the team who are investigating the liver lesions know about the endometrial biopsy? Got everything crossed for you and hope you get some answers soon - being in this limbo of not knowing is very hard.

Next step is another MRI, this time with contrast dye to find out what kind of tumours are on my liver - very likely benign but still scary. If the endometrial biopsy comes back as cancer though then I suspect we’re looking at metastasis.

God bless, Dracs. Hope you get the all clear soon for your peace of mind.

Hoping that the tumours are benign. You must be so worried 😟, hope you don't need to wait too long for answers.

I think I saw your other thread too. Sending lots of love and I hope you find out what's going on soon. xx

Sending loads of love

How are you doing @Draculaswetdream ? I’ve been thinking about you

I’ve stopped bleeding!

I had a contrast MRI today in my liver, still no endometrial biopsy results but I think they are more concerned about my liver being cancer at the moment.

I was thinking about you earlier too. When will you get results on your liver?

Very glad your bleeding has stopped and wishing you the best for your other results!

I’m not sure, I think next week. The last MRI took 10 days but given they know they’re looking for something possibly horrid this time I’m hoping it will be faster.

Is there any update? I’ve been thinking about you. Is there maybe a new thread I’ve missed?

Hello! No update on the endometrial biopsy, but I don’t have liver cancer. My liver tumours are FNH so benign which is a massive relief!

That’s great news about your liver!

That's great news, thanks for the update.

Fantastic news, what a relief!

Well you have been through absolute hell, OP. I just saw this thread and I could hardly believe it. I am very glad you’ve got one piece of good news at least. I hope you will have more soon.

I was wondering how you were OP. Some good news for you at least. Stay strong 💐

OP how are you doing?

Bless you for thinking of me, thank you.

Im doing well, my bleeding stopped for 40 days with the progesterone, I finished the progesterone treatment 2 weeks ago and I’m now bleeding again but hoping that this is just a normal period. In that 40 days my hair started falling out and has gone very thin, but I spoke to the GP who said while I’ve been anaemic my hair will have stopped growing as the body was stressed, so now the old hair will shed and there’s nothing to replace it which makes it look thinner. She said it will grow back now that my iron levels have come up (they’re not normal yet but they are loads better and my goodness can I feel the difference!)

My biopsy results came back and my hyperplasia is complex atypical (no one is shocked I don’t think!) which was a bit of a blow - however, I’m choosing to see this as ‘you nearly had cancer but thankfully they’ve caught it very early’ rather than ‘you have pre-cancer’.

I’m now on 2 waiting lists - one to see gynae and discuss next steps and one with hepatology who want to discuss my dodgy bile duct and what can be done to stop me having biliary colic attacks every couple of months.

So out of all the possible ways this could have turned out I feel like I’ve got away quite lightly!