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 am also appalled at your lack of treatment. Try and stay strong and clear in your demands. But if you break down emotionally (I did at the lack of care when I hurt my foot) don’t beat yourself up. You’re human. Sometimes I wonder(ed) whether I could say the same about the nhs.

The biggest attitude I noticed was “computer says no”. It was a horrible merry go round. Brace yourself OP. Keep going. Don’t give up.

@C8H10N4O2 ,
I had exactly what you described. Large multinational company. But it didn't cover previous illnesses. But I suppose some will do.

This is the problem, I’m a completely rational human being normally but as soon as I have to talk about this to someone in person I completely
lose it and start crying. It’s desperation I think and just feeling completely lost. I’ve just totally lost faith. The last time I got an appointment about this, I had to wait a week for it and it was a phone appointment with a phone GP service not the NHS. He said I needed to be seen in person and he sent me for bloods but that was ‘all he can do I’m afraid’… wtf was the point??

I'd book a private scan ASAP. If it's serious I'd want to know. If it's not serious I'd also want to know. It could be a fibroid or a polyp, then you can request a follow-up from your GP.

Hi I am a GP but will talk in general terms only as I do not give advice to individuals outside of my practice and do not have your full medical notes.

For this type of presentation with heavy and/or prolonged bleeding, I would expect to see you for vaginal examination, bloods including thyroid, ferritin and full blood count, and a coagulation screen. If you’ve not had a recent ultrasound scan that can be helpful to check for things like fibroids, polyps, endometrial thickness. If these things don’t help to identify the cause then I would refer to gynae with a view to further tests such as a hysteroscopy. In some areas hysteroscopy is preferable to ultrasound so it can depend on local referral pathways. In the meantime we can use medications including contraceptives to reduce/stop the bleeding which will sometimes allow the body to reset into a better cycle or at least give you some respite.
…. so please do go back to the GP as you’re not out of options yet! I’m sorry to hear of your previous experiences though.

If you’re not getting anywhere ask for a second opinion and have a look at NICE guidelines if you can. If bleeding becomes progressively heavy (eg soaking through pads very rapidly), severe pain, feeling faint you may need to seek emergency assessment.

I wish we could all chip in a fiver and get you seen privately.

Take your most assertive friend with you to speak for you, completely understandable that you're at your wits end with this.

A mirena coil might help, it can be fantastic with heavy bleeding and it's not permanent

I can’t afford private treatment, we’re on our knees financially as a lot of people are. We’re covering our arses (just), I have £40 a month left over after all the bills and essentials are covered so I’d have to save up.

Really hope the self assessment helps. I scored 14 but it was the last question - breathlessness /weakness that seemed to make the difference when I called 111.

Best of luck

Why won't you go to A&E?

You're bleeding heavily with floods so bad they're ruined furniture. Your GP has been no help and the meds prescribed aren't helping. Soaking a maternity pad every four hours is extreme and you would likely be filling a normal pad much quicker.

It's time to seek other help. Go - it could be an infection - a woman posted on here a while ago with similar and was encouraged to call an ambulance. By the time they got to her she was severely unwell and spent a long time in hospital.

Low iron can cause excessive bleeding too - if they can treat that it might help too.

Put it this way - if your arm was bleeding this much what would you do?

It’s appalling that you feel you should have to put up with that amount of bleeding imo. Sexism in action, although GPs seem to be bloody awful at the moment. A&E or a walk-in and demanding referrals (politely) sounds v appropriate after being messed about.

Thank you, I’ve screenshotted your post and I’ll write that down and ask for all of it. So far the only bloods they are doing is checking my HB, LFT (I have NAFLD due to PCOS) and I think just standard blood count or something? HB is 8.1 currently, I’ve not had an ultrasound since I was pregnant and I’ve not had an examination. This is the thing, what if it’s not even gynae and it’s bladder or something??

Yeah I’m not breathless, I’m tired but not weak.

@Draculaswetdream retired nurse here. i would just go to a/e. there will be a gynae person somewhere in the hospital if you are not getting the support you need from your gp. have you done a pregnancy test recently? you are bound to be anaemic after all the blood loss. the medication you were given is called Tranexamic acid. when you go to hospital take all medicines with you. good luck

I understand your point but I’ve been here before - when I was bleeding like this after my son was born I presented at an and e several times. No investigations offered/ completed, they made no attempt to stop the bleeding at all. Granted it was just after the pandemic, but I can’t imagine the treatment would be any different.

One last push at the GP for a gynae referral and if that fails… DIY hysterectomy? No idea.

Push for a scan to see what's going on. I had all this for the best part of a year. Constantly bleeding and passing massive clots. Literally like a few days of no bleeding here and there. Constantly on iron tablets. I kept getting fobbed off with the tablets that stop the bleeding (I think the tranexamic acid sp?). It only came back the same as before. I finally found a GP who referred me for a scan. It showed a thickened endometrial lining. I kept telling them I want a baby but the only thing they could suggest was the Mirena coil to help stop heavy bleeding. I got it in sept last year and the bleeding stopped literally the day after! Like you, I had the constant gushing with clots the size of my palm. Literally leaking through all the double/triple protection I was using.

All my GP's have been shit. Their answer to any irregular period issue I've ever had is 'go on the pill'. There's never been any treatment for anything other than being given clomid for ovulation.

They suggested this form of treatment for my issue for 6 months. I had it removed in May and I've only just started spotting recently. I have pcos so my period has always been haywire.

The issue is it takes a bit for your fertility to return back to normal because of the hormones in it.

I've also just started using Agnus castus as this is 'supposed' to help balance your hormones and heavy bleeding.

Sorry, I've gone on a tangent. Just bought it all back. I really hope you get sorted..x

You know where you're bleeding from, especially if you're flooding (there's nothing quite like the sensation, is there? 😬)

And it makes no practical difference at this point - you shouldn't be bleeding like that from anywhere!

Yes ive pregnancy tested every other day pretty much in case this is a miscarriage but all negative and I’m not in any pain.

Norethistone will stop the bleeding.
If you can’t get an NHS prescription Boots actually prescribe it privately for delaying periods. Might be quicker.

But a trip to a&e might be in order.

I went through exactly this until the age of 45 when as I walked into my GP room I collapsed. He took my BP and called an ambulance. Two weeks later I had a hysterectomy which then resulted in me waking up in icu as I'd lost over 3 litres of blood. I was referred to a specialist haematology hospital and was diagnosed with a blood clotting disorder. I would ask your GP to either be referred to gynae for a hysteroscopy or haemo to look at how your blood clots.

I instantly new you would have a higher BMI. Not because of your symptoms but because of how you've been ignored and fobbed off by multiple GPs. They have blinkers on and all they can see is the weight. While it does make some conditions worse, it doesn't mean you're not entitled to decent care. Bleeding to the point of needing a transfusion in the past is nothing short of medical negligence.

I hope you can push for some further meds and investigations because this should be a massive red flag to any decent GP. Sadly there's not many of them to be found.

True - can’t help feeling if I completed the GP form and just put ‘I’m bleeding’ and didn’t say where from I might get a quicker appointment!

Hilariously, when I was diagnosed with PCOS I was referred to the weight loss program… which is a high carb, low fat diet. I have insulin resistant PCOS and the only treatment available to me is the exact thing that got me in this mess in the first place: high carb, low fat yo-yo dieting. I had to play the game though and go to the meetings etc etc which I dutifully did on the promise that if I hadn’t lost 10% in 6 months I could have a referral to the proper weight loss clinic… I didn’t lose 10% in 6 months following the eating plan (SHOCKER.) and was then told ‘we’ll you mustn’t have stuck to it properly, do another 6 months’… instead I went into low carb, moderate fat and lost 7 stone in a year and a half. I’m still overweight and my PCOS got worse not better with the weight loss

Go to a & e you wouldn't hesitate if bleeding continously from anywhere else.