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.

No, nothing. I take 2 every 4 hours through the day but it doesn’t seem to stop it and I still get ridiculous floods every couple of days with no warning. Those are the worst bit I think - if I could stop the flooding I’d be able to cope but the floods are so sudden and so embarrassing.

And private health care unlikely to cover an issue you had before joining

Yes I pass clots sometimes, not in the last 4 weeks though, it’s just been bright red continuous bleeding.

OP I am genuinely appalled at your treatment! I've not had heavy periods but have had several miscarriages and what you went through is horrific - I'm very sorry you went through that! Not knowing where you are but Romford Queens hospital has a gyny A&E - specific to all gyny problems. They would sort you out straight away (well barring a sort of standard a&e wait dependent on how busy they are) They are 24/7. I travelled an hour one to be treated there as I knew they'd treat me on the spot! At a guess you need some tranexamic acid to stop you bleeding and then further investigations as needed. Honestly I'd go to a walk in urgent care if I were you - good luck!!

If its a standard large corporate scheme it will.

So long as the OP isn't asked to fill in a medical form before joining the scheme its likely to be what used to be referred to as a "white card" scheme.

I’m in Staffordshire so if anyone knows of any services round here that would be great.

Im not going to an and e, it’s not what an and e is for and I’d be sat there for 8 hours+ and sent home no better off round here. Same with out of hours services.

I had a Dr friend recommend looking up the NICE guidelines because it kind of gives you the trigger words to use with the GP to force a referral.

People can say whatever they like about the American healthcare system and is crap of you don’t have good employer health insurance, but when I read things like this, I am unbelievably happy I don’t have to rely on the NHS anymore.

I've also had success with tranxemic acid. It works really quickly. I just take it for two days a month and it stops me flooding and generally makes it more manageable BUT I was only prescribed it after internal scans and blood work to see what was going on.

You need to go to A&E

Do GPs forego some sort of bonus if they refer too many patients to specialists? Why is it so fucking hard to get a referral in the UK? My DS was having throat and ear infections every 3 weeks for well over 6 months and the GP refused to refer him, it was a locum GP who actually said "I am referring him and I don't care what they say to me" that finally did the referral. (And with wait lists the operation didn't happen for well over another bloody year).

Whereas now I'm in Australia if I ask for a referral I just get asked "do you want to go private or public and wait?" But GPs are funded per visit here and not on number or demographic of patients (and definitely no bonuses for mirena coils, etc... 👿)

Hi OP, could it be that your cysts have ruptured? I have PCOS and whenever I feel any trouble relating to it, I specifically ask the GP to refer to my for a scan.

I would spend £100 on a private gp appointment. It's appalling you've been treated this way, your Dr is not doing their job properly.

@Draculaswetdream if you're not too far away go to the walk in centre at Samuel Johnson in Lichfield. They're open until 9.00pm I think

Complete this. https://assets.nhs.uk/tools/self-assessments/index.mob.html?variant=54
Tell your GP what score you are an YY ask for a referral to Gynae
Ask for Mefenamic acid (Until you get it try ibruprofen)
Ask for thyroid tests - including antibodies. My underactive thyroid (until treated) caused horrific bleeding. It took a few years for it to get bad enough to treat though. Had to use the contraceptive pill in the meantime.
Ask if they will do progesterone/oestrogen tests. Heavy bleeding can be caused by high oestrogen vs low progesterone - ie when it is imbalanced. If they do test, check you are being tested on the right day..tricky as no cycle though.....If they will not test (as it can be tricky as levels do go up and down throughout the cycle) maybe ask if they will consider a trial of prescribing progesterone (body identical like cyclogest) rather than progestins (synthetic). Cyclogest is used in pregnancy so would not be contraindicator (not a medic - do check this, but I was on it due to recurrent miscarriages. The HRT equivalent of utrogestan is now being recognised as important in controling heavy bleeding for peri women.
How much iron are you taking? You can take up to 3 x 210mcg a day. Low iron exacerbates bleeding so maybe take some more.

Does your bleeding start again when you stop taking it?

I would if I could spare £100 at the moment

A & E. I had the same thing though stuck it out a little longer. Phoned 111 at a weekend as my head was thumping - I could hear my heartbeat in the back of my head. They called an ambulance and told me to lie down whilst it was on the way. Emphasis just how much you are flooding.

I was kept in overnight and given tranexamic acid, mefanamic acid and progesterone. Was also put on a drip as I was so dehydrated and told off a lot for leaving it so long. I was told that 10 days of flooding was enough to call for help

Best of luck.

Tell your gp very clearly that you are requesting a referral to gynaecology. You have tried what they have suggested and it hasn't been successful. You are entitled to see a specialist. Take someone with you if you find it hard to be assertive with doctors.

Also - and this stinks but can help - tell them the bleeding is stopping you working and stopping your poor husband having a sex life (whether true or not). Sadly, some dinosaur doctors are moved by the plight of husbands and employers more than female patients.

Good luck OP

I had to go to A&E, it was awful and it took hours. They took a CT scan and did a scan of my bladder and womb, which is what I was trying to get the GP to agree to investigate. The problem still isn't resolved but at least they are now investigating.

Thank you so much.

I score 11 so I’ll screenshot that.

I understand you don't want to go to A&E but sudden flooding to that extent is a reason to go.

If you go to A&E OP, choose your times. Early morning is best.

At 7.30 am my experience was that you could be seen in 30 minutes. At 2 pm or 8 pm you could wait 4 - 6 hours plus. I went on 3 separate occasions.

This is Speaking from personal experience recently. It really made a difference what time I went.

It isn’t I’ve been before after flooding at work - because it’s not continuously at that level, they’re not interested and send you home with advice to come back if you’re filling a pad in an hour continuously. They also sent me back to my GP.

With a severe sudden flooding, on top of anaemia and lengthy bleeding already I’d go to A&E. Call 111 first for advice if you really don’t feel comfortable.
In my case it was multiple cysts, I needed a blood transfusion and surgery.

They usually do on a decent work policy