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.

I’m actually so glad that you were able to take off so you can at least rest up and not stress about… chairs and upholstery!

wow 20mm 😕

Thank goodness you’ve been seen and taken seriously at last. Best of luck with everything now x

Thanks for all the support everyone, I’m so grateful and always will be that you all pushed me to advocate for myself. As a result I have at least half an answer to what’s going on with me and a plan to figure out the rest.

I slept at home last night with DH snuggled up. We’ve decided that if there’s any significant risk of cancer then it’s a hysterectomy for me, we’re not that bothered about a second child.

Try and get a Dr with an ob gyn RCOG qualification. And ask for a referral.

How are you feeling now? Has the bleeding slowed any?

Fingers crossed it doesn't come to you needing a hysterectomy.

Also fingers crossed it won't come to the hysterectomy but I think it's really good you've had a chat. You may be eligible for egg freezing if it does, so ask the question at least incase emotions change down the line x

That involves using a surrogate which wouldn't be an easy thing to do either.

@Sugarfree23 aware of that but just suggesting she at least asks the question to make informed choice etc.

I work in ultrasound and I'm actually appalled they didn't get you these pads sooner. Also, I've just caught up on the whole thread and yes, we are not even slightly phased when someone bleeds all over the couch during an internal scan (I've held pads on for women to stop blood running down their legs before now) and I'm also really glad this is finally being taken seriously and so very sorry it took so long.

To be fair to them i kept myself to myself and just kept nipping off to change my normal maternity pads, it was only when I mentioned I’d run out that she brought the big ones. I’ve been discharged with a massive stack of the huge pads and they last me 4 hours or so before they’re saturated which has allowed me to do vaguely normal activities today.

My bleeding has slowed down quite a bit today, I’d say it was just a very heavy period level at this point rather than crazy which is a massive relief. DH has picked up more bed pads because I bled through twice in the night so if I go through 2 a night they only come in packs of 5. Does anyone know if you can get heavy duty pads on prescription or where to buy them?

We’ve discussed it and morally I’m not comfortable with surrogacy, but we’ve said if we wanted a second we quite like the idea of becoming foster parents or possibly adopting.

I’m feeling ok, I’m very tired and a bit emotional today. The bleeding has actually slowed down a bit and no floods yet today so that’s positive.

Its all hit home today a little bit, especially when my DS has come to me for a cuddle and I just don’t want to let go of him again.

I’ve started getting some very light cramping which they said could happen on high doses of progesterone and a ‘heavy’ feeling I sometimes used to get on my period in my pelvis so I think the progesterone is doing something.

Puppy pads might work for you @Draculaswetdream Some have sticky corners so you can stick them onto the sheet. Or maybe the ones with sticky pads were for training toddlers? But they come in quite large packs so should last you a couple of nights.
I really hope they get to the bottom of what is causing your severe heavy bleeding. I too have very heavy bleeding, nothing like you are experiencing. I can't say periods as they aren't regular, and I have it very light for currently two months in between, but my ferritin has got down to 3 because of it. I am older than you, 52, and my hysterectomy date a come through for the start of Jan and it can't come soon enough.

Superdrug night incontinence pads are enormous and reasonably priced too! Give me five mins and I'll add a pic of one!

These ones! 😊

That’s exactly what I need THANK YOU!

1st complain to the prwctice manager in writing by email and CC in your local MP.

That is not ok. This could be serious. Not too scare you but my BFF had unusual bleeding also has PCOS and she was diagnosed with Stage 2 ovarian Cancer. He Dr sent her for an Ultrasound and MRI for diagnostics.

Go back to the Gp and insist you are referred yo an OBGYN for a urgent 2 week referral with scan.

I did some time as a bookings clerk and secretary in the OBGYN department and delt with urgent referals.

Last resort go to A&E during the day so they can get an OBGYN to come see you.

The ones the NHS use are significantly bigger than this and hold a lot.

https://www.incontinencechoice.co.uk/tena-comfort-extra-1800ml-40-pack.html?gadsource=1&gbraid=0AAAAADxOc4YjZPcN30zJUVYImyAoLl7gx&gclid=Cj0KCQiAyeWrBhDDARIsAGP1mWRs0eZeYUJPuaml-2OJ7Coz5PCj6xEPcFgc1Wvf1plOcKKcgTrijmgaAri4EALww_wcB.



Thank you, if you catch up on the thread, the GP sent me to a and e and I spent the night in hospital. The positive is I’m closer to a diagnosis, the negative is they found endometrial hyperplasia on an ultrasound which could be cancer, but probably isn’t yet. Yes the GP should have referred me for a scan the second I went in with abnormal bleeding though so I’ll be making that point, as there’s absolutely no reason this should have been going on so long and if it is cancerous, I could have been diagnosed and treated much faster.

Hi @Draculaswetdream It may be cheaper to buy yourself a couple of cot mattress protectors (obviously not fitted ones) and put them under you in bed. When I had bleeding issues I put two (or even three) in so I could just peel one off and crawl back into bed.
I ended up having a hysterectomy (my family was full by then) and have never, ever looked back. Recovered quickly despite having a nearly 3y/o and 10m/o twins. Still took some time for my ferritin to climb, (but I do have coeliac disease as well) and needed about four infusions over two years. It’s been good since and can honestly say that my uterus had been trying to sabotage my life since my first period at 9, and I had never felt better. (History of heavy bleeding right from the start/miscarriages, etc)

@Draculaswetdream so sorry. I didn't realise how many pages. I need to sleep.
Glad things are finally getting investigated. And yes a complaint and escalation is needed. All the best and hope you stay well.

@Draculaswetdream
I'll assume you sleep in a double bed. But I got a mattress protector for a single bed from Asda I'm sure it was only a £5 a few months ago. But they probably do doubles equally cheap.

You're welcome! If you were anywhere near me I'd give you what I have but we're miles apart!

Yep. But the Superdrug ones are available off the shelf and @Draculaswetdream won't have to wait for delivery.

If you have any more big bleeds, buy Boots maxi night time incontinence pants, if they can cope with me losing a very full bladder, they will cope with flooding & being pants there is no risk of the pad coming unstuck. You could even add one of the large pads the hospital gave you if you wanted.