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.

Sorry OP. I don't know what to suggest but I think what you are going through is appalling and I can't believe how useless your doctor is being.

Have you tried the pill or the coil? Or Mefenamic acid tablets?

No none of those, we want another baby but it’s off the cards anyway until I get this sorted so I’d be fine having hormonal contraception if it fixed it. What’s the acid?

I think it might be worth a trip to a and e or a walk in clinic. You need a different doctor who can take it seriously. So sorry sounds so stressful

Does your GP say 'why have you come here today?' or one of those openers?

Say 'I've come here for a referral to gynaecology'. Full stop, expectant look.

I would keep your responses really short. You've taken iron since date x, you've taken the other medication since date y and you are not seeing any improvement.

If they won't refer you yet, ask what timescale of sustained bleeding would be likely to be accepted by the Gynaes for further investigation.

I am a huge advocate for GP gatekeeping in fact but it does require you to message very clearly. Every GP practice gets jumped on by the commissioners for every referral they make. So treat it as a joint problem that you can help solve by providing them with the information they need to prove the referral is necessary.

Mefenamic acid is a painkiller often prescribed for gynae problems.

Are you in a position to pay for private treatment? I would if I was you and it's something you can pay for. My sister has seen a private GP for something similar in Hertfordshire and got a prescription for mefenamic acid and a gynae referral.

This

we also have a hospital clinic locally on a Thursday morning for gynae which is emergency doctor referral (U.K. sw) your GP can phone and get you in

i would just go to a and e though

You shouldn’t need to do this at all, but you can have a pelvic scan privately for under £100 (if affordable). It may give you some info to go to the GP with if they’re not listening.

This is also the 3rd GP practice I’ve been to with women’s health concerns and ironically, this has been the best one so far

First GP I left because I went in having a miscarriage and needed pain relief so I could cope at home and not go into the maternity ward to deliver (I’d done that before and it was the worst experience of my life) and they wouldn’t prescribe anything stronger than paracetamol until I’d had a scan to confirm I was indeed miscarrying. It was my 7th miscarriage, I knew exactly what was happening and just needed them to listen and help. They organised a scan for 2 weeks time and told me hot water bottles help with cramp. I miscarried alone in the bath with no strong pain relief 3 hours later. I was 11 weeks.

Second GP I left after I told them my post-natal bleeding hadn’t stopped and I was tired all the time, muscle aches etc. They said ‘it will settle down soon don’t worry and all new mums are tired!’ my son was 10 months old. I didn’t stop bleeding for a further 6 months by which point I was so severely anaemic I needed a blood transfusion.

I love the NHS but I’m genuinely at my wits end.

You need to go to A and E if you’re losing that much.

This is great advice, thank you. I tend to get emotional in appointments because I’m so fed up and I don’t think that helps!

I’m not losing that much continuously, it was a sudden flood. I’m going through a big maternity pad every 4 hours on average outside of flooding.

Northosterone will stop the bleeding
gold standard for heavy bleeding is the Mirena coil but you need to complete your family prior to that so I’d push for norethisterone, a trans vaginal ultrasound and referral to gynae

Go to A&E. take the soaked pad with you (it helps to show stuff).

No one should bleed this much.

Unfortunately I can’t afford a private referral at the moment but in April next year I’m getting private health insurance through work so that’s the plan. Private health cover is against everything I believe in

Can also ask for an iron tranafusion if you are symptomatic for anaemia with ongoing bleeding (lifespan of red blood cells is approx 120 days so iron tablets take approx 3 months to increase your Hb)

I had this in my 30s and I did get a bit of "wait and see" before being referred to gynaecology, plus of course "I see you're overdue for your smear so let's do that before we look at anything else" and "what about a Mirena coil". Finally I was referred to gynae, got some fibroids out, and problem solved.

Go back to your GP and push for an ultrasound scan - this should be possible without a tertiary referral.

I’m in Staffordshire and I don’t think that’s a thing up here, I’ll have a search though.

Go over your GP and straight to a walk in centre.

There are too many examples of reluctant GP practices rationing referrals.

Hi op, do you clot hun? I had this problem back in 2018 where I constantly bled for 2 years. They suspected I had pcos or endetriosis. (Spelling mistakes)

I ended up having a laporoscopy.. After that the bleeding stopped. I think you need to keep on at them(gp and gynea).

Just in case this helps in the short term.
Tranexamic acid will only work if you take it regularly. It wears off after 4 hours and the bleeding will return
(Not that you should have to be on it long term but just in case it gives you a break)
I take 2 every 4 hours. Miss a dose and I'm back to where I was.
Have you not been offered a womb scan? Anything?!

If you can afford it, ask your GP for a private referral to a gynaecologist. If not, ask to be referred under NHS Choose & Book to your nearest private hospital. Don't take no for an answer, be assertive.

Agree with above. Insist in a referral to the gynecologist.
But the waiting list is so long you may need to go to A&E. Very bad to be anaemic for a long time and they need to find the cause. I think this should be an urgent referral. See too if your GP has someone specialising in women's health. Mine had and she was very helpful. Good luck!

My suspicion is fibroids, because if my BMI it can be more difficult to get a good picture on an abdo ultrasound so I need a teansvaginal ultrasound I think.