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 good news OP - it should have happened sooner but better late than never!

Glad you're being seen and heard, OP, well done for bracing yourself with knowledge and going in prepared. Really hope it goes well for you. Don't forget the smear test @Draculaswetdream ❤️

I had this problem. I am also a nurse and former midwife.
You need an urgent gynae referral, a scan (if you've not had one) and possibly a hysteroscopy (don't be nervous I've had several, it's slight discomfort but ok)
That's for diagnosis and plan of action.
You may be offered something like norethisterone/ mefanamic acid. You may have to consider something that's contraception just to get on top of this problem, but without full investigation and diagnosis it's hard to treat anything tbh.
Secondly the anaemia needs to be addressed. Your HB is very low, you must feel wiped out. Usually we would only consider transfusion if hb is 75 or less, but that also depends on how symptomatic you are. Try to also address diet, not so much iron rich food but things that will help you to absorb more from what you're already eating; so vit C (like fresh orange juice) with meals and no tea/ coffee within 30 mins of food is a start. Obviously, you need to resolve the causse of your problem but this might help you to recover more quickly.
I had years of this, so my heart goes out to you but get that gynae referral urgently and if things don't help, keep returning. Be aware that some solutions like having a merina coil temporarily can take 6 months to work, so get the ball rolling and best of luck

Oh great just seen you're getting sorted! Sorry it only half loaded wheen I replied. Good luck x

Me again.

So to update, I've been on progesterone a couple of weeks and although it initially slowed the bleeding down, it didn't stop it so I went back to the GP and they've upped my dose to one tablet twice a day. My bloods all came back ok except my iron levels. So clotting fine, thyroid fine, liver function fine. I'm anemic again (no shit sherlock I look like I've been dug up!)

The last 3 days since I upped the dose of progesterone the bleeding has hit new levels of crazy - I'm passing golf ball clots every couple of hours and even my heaviest heavy duty period pants aren't lasting longer than a couple of hours. I've ruined yet another office chair at work and when I sit on the toilet it's just pouring out of me to the point where im having to hold tissue against myself to be able to stand up to prevent blood going everywhere while I pull my clothes up.

I don't know if it's the progesterone causing this, or whether this is a new cycle and it's gotten heavier because this is actually a period? I have now been bleeding constantly for 58 days, some days just spotting and this is the heaviest it's been. Am I wishful thinking that this could be the end of it?

I really think you need to go to your local gynae emergency department.

I agree actually. I'd ring the GP and if they can't see you today I'd go to A&E. Unfortunately I know a few people who've only been given the right treatment for their serious conditions after actually rocking up at a hospital.

It cannot be right that you are losing this much blood and if you're anaemic already I'd be really worried that you could be dangerously so soon (I'm not a doctor just know people who've lost similar amounts of blood during menopause and ended up having a transfusion).

Do go and get seen.
l have been taking progesterone for a few weeks now and my bleeding is similar so I have stopped taking it. I have tired it several times before and it usually makes me bleed non stop which is frustrating as most people seem to have the opposite with it, sadly it’s not the case for everyone. Make sure you keep taking iron tablets and keep getting your bloods checked.

Op I'd go to hospital. It really can't be right that you have bled for so long.

There isn't one locally unfortunately that you can access without a GP referral.

In case you missed it the first time I posted it

Oh cross post - do you need a referral for the dept I just posted?

That's utterly ridiculous that there'd be an emergency department you can't access without a GP referral!!! What about just ordinary A&E?

How are you feeling btw?

Yes you can't be seen by them unless you have a referral from MAU (via A and E) or go via the early pregnancy unit - I can't access that though because I'm not pregnant

Love get yourself to A&E. If you were bleeding this much from anywhere else you'd go.

It sounds like you're dangerously close to hemorrhage level which could kill you.

Please go and get help!

I've submitted a form for the GP and made it clear how bad the bleeding is (attached photos of the office chair I've just ruined, toilet bowl and 2 hour pad). I don't want to rock up at a and e just to be sent home again and told it's a bad period :( If the GP says I need to go to a and e though, I will.

Ok if that's your plan, I just remember a relative with similar symptoms who thought she had anaemia and after a second set of bloods were done found out that she'd lost so much blood it was a miracle she was alive and ended up in hospital for over a week. Not trying to dramatise! Just saying that your blood test results are from before the blood started (your words) "pouring out" of you.

Yeah I know - I'm fully aware of the risks and if I felt in any danger I'd be going to a and e straight away. Although I'm tired, I'm not breathless and my pulse is normal. I will absolutely be going though if this doesnt either stop soon or i don't hear back from the Gp today.

Have you thought calling 111 sometimes they act much quicker than your GP might be worth a go.

The problem is because it's heavy bleeding they blanket tell you to go straight to a and e and I want to avoid that. They don't actually offer any advice specific to my condition.

Fucking hell. This isn't normal or OK, how on earth can you be left like this??

I do think A&E maybe your best bet. They can do a scan, and refer you over to gynae or get an obgyn Dr down to see you. You may need to be very persistent. Which isn't easy when you're not well.

You must be so fed up.

Glad you've contacted your GP, with photos too, that was the right thing to do.
When you speak to your GP, make sure you get the referral details that have been done; so the dates and contact details for gynae referral, the MRI and any other scans you've been referred for.

Then make sure you chase these up yourself, continually, giving info each time of how your symptoms are progressing.

This is the best way to get seen by the right people without being lost on the waiting list system.

Op the GP isn't going to be able to do much more than give you pills.
This is not normal period bleeding go to A&E get them to check you out.

It was A&E who found my friends fibroid.

@Draculaswetdream please just go to A&E. Your GP hasn't been able to help so far and there's no reason to believe that'll change in the short term. You need proper medical help today!

Time to go to A&E for sure as you've tried the GP's numerous times and not really got anywhere.

I mean, it mightn't change what the system does but there's no harm in trying.