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 practical help to offer, just to say I'm so sorry they've neglected you like this. My female medical friends admit that many women who are classed as overweight get fobbed off with this as if it's the answer to everything. Such a load of bollocks. The only way out of it is to be the squeakiest wheel, keep insisting on further investigations and not being sent away.

Ask to see a female GP as well, I'm not saying they're all great but men seem especially prone to the old "lose weight it's magic" fallacy.

Op this is absolutely awful.

The one thing that I can say is that this is caused or linked to PCOS. However, it still needs to be investigated as you cannot go on like this.

You need to need to waltz in at your next appointment and demand a referral to gynaecology and ask for a pelvis scan to include uterus and ovaries.

I have no idea if you’ve ever been told this before but women with PCOS are often very likely to have a MTHFR gene variation which means we don’t absorb folic acid and vitamin B12 as well as other people. (This is even if you live off of foods high in folate and B12).
This means in result that you need high supplementation and very often this maybe be one of the causes of recurrent early miscarriages.

As standard, you should be on 5mg of folic acid prescribed by the GP.

Additionally, if your levels don’t improve very dramatically, I would look into Folate supplements as Methylfolate 1mg (can buy online) and B12 supplement as Methylcobalamin, these are both the active forms of these supplements and assure that your body absorbs them.

Lastly, I would definitely advise you to follow “Nikki Thornton from PCOS revolution (and look into the supplements she recommends- google them individually and check the studies. She doesn’t sell them. She does sell coaching but offers a LOT of free content which is very valuable).
I would also follow the PCOS mentor. Amazing advice offered from them all.

good luck babe xx

P.S. I have PCOS and the MTHFR mutation too 🙂

Good to know - it really does feel like I’m slipping through a crack somewhere. I’ll add it to the form I’m sending in the morning.

Op it sounds like fibroids to me. Are you passing huge clots too ? There is something obviously not right with the womb for you to loose so many babies too, sorry for your losses 😢

The next time it happens I'd go to A&E.

Go to A&E. They will refer you to gynaecology which is what your GP should have done
I bled so much I ended up needing a blood transfusion and had 6 pints put in and a D&C
they will give you something to stop the bleeding and a scan . You might need to say your pelvis is hurting
you could have an infection/endometriosis or even PID best to get it checked out as if you do have an infection it can scar your fallopian tubes
mine turned out to be endometriosis with infection .

Apologies OP I have not read every post but so far this is very upsetting and making me angry.
If you haven't already, I would suggest taking someone with you to an appointment who will speak firmly on your behalf if you become too upset.
But it sounds like you have tried everything.
I'm sure you even banged saucepan lids for them back in 2020 😡

I appreciate you've already said you don't want to go to the emergency department. However, if its reassuring to you, I work as an advanced clinical practitioner in A+E and if you came to my department I'd be requesting the gynae doctors to review you urgently and organise some imaging (ultrasound etc). You've tried to do the right thing by going to the GP and aren't getting anywhere. Nobody is going to judge you for attending the emergency department with heavy symptomatic bleeding.

No huge clots, the occasional small stingy clot but nothing massive. Biggest they get is probably 7cm long ish? It’s mostly free flowing, fresh red bleeding. Occasionally for a few days it will go watery and pink and I’ll think it’s stopping, but it then thickens up again and turns back into bright red.

I was never a saucepan banger, I adore the NHS and understood what a bloody farce thst was when the whole system was on its knees!

I just wondered whether you could request a meeting with HR and request to have your health cover start earlier than they are contractually obliged, given it’s affecting you at work?

That’s a good idea, I also need clarification whether it will cover existing conditions. It’s in their interests to keep me at work (I span bits of a lot of roles and departments in a senior role so it would be hard if I went of sick to replace).

In Scotland GP’s are contracted by the NHS, so it’s maybe a shitty practice but not the “NHS not helping” so taking that into account the best thing is to present yourself at A&E, I’m not saying for a second you’re not going through a horrific time or that your GP is right but for your own safety take yourself down to A&E and don’t ask the internet for help - where I’m sure most people give advice with the best intentions you never know.

hope you feel better soon 💐 x

OMFG you poor thing, this is horrendous, I am so angry for you. You have been through so much.

I had some similar symptoms (but only for a few weeks) and it turned out to be adenomyosis (bit like endo, but the stuff doesn't grow outside the womb, it just makes it really swollen. You definitely need a transvaginal ultrasound to see what it is.

Your list of things to do is great, just want to agree with others and say, take someone with you to stick up for you. If they don't listen you might just cry again (I know I would/have) and you've come so far with all this.

OP I'm honestly honestly not trying to be a dick but because MN have mucked around with the 'quote' function I think you are pressing 'reply' and thinking (not unreasonably) that you are replying to a specific post, but we can't tell what you're replying to - if you want to quote a post to reply to you press the three dots in that post then 'quote'. It's a stupid system and loads of us have been asking MN to change it.

I can't believe what you're going through, it sounds horrendous. How can medical professionals just leave you to go through all this?

Can I just say, thank you everyone. This is mumsnet at its absolute best and I’m so glad I posted. I’ve been given such great advice and solidarity on this thread and I feel like I’ve still got options when I thought I was headed for hysterectomy or nothing. Thank you thank you thank you.

Omg sorry! I thought it added the quote in! Thanks for pointing it out :)

I had really heavy bleeding like this. One day it was so bad I was flooding vasts amounts with huge clots and I ended up being taken to a&e in an ambulance. It turned out I had a huge fibroid which was so big the only only option was for me to have a hysterectomy which has been life changing. I kept my ovaries and just had the womb removed. Keep pushing for answers op, don’t let them fob you off. I ended up being severely anaemic and was on iron tablets and in the end my levels were so low I had to go into hospital for an iron infusion. When the bleeding was really bad I think they put me on transexamic acid.

I’m going to take my lovely husband I think, he’s going through it with me and sees the worst of it.

Is there a chance you’ve had a miscarriage without knowing you were pregnant and your bleeding because you have ‘retained product’? Sorry, I didn’t explain why I meant for you to have a scan, as a matter of emergency rather than investigating other more long term issues/conditions.
Would you be able to go back to the recurrent miscarriage team/your GP and ask for help with losing some weight (the amount they’re expecting is ridiculous) which may hopefully help with some of the issues you have and therefore help settle bleeding/help you carry a pregnancy?

No you don't! You can have the mirena coil and go on to safely have more pregnancies.

Yep so I’ve done that - the ‘help’ to lose weight available is a referral to a weight loss program that uses the NHS healthy plate advice. This is a high carb, low fat diet that advises a third of your plate is carbs. PCOS is a metabolic disorder that comes hand in hand with insulin resistance, so a bit like type 2 diabetes. The very worst thing you can eat as a person with PCOS is a high carb diet, because you already have a shit ton of insulin and eating more carbs creates huge insulin spikes and causes you to gain rather than lose weight. It’s why women with PCOS often have a much harder time losing weight that metabolically normal people.

i (of course) raised this with the ‘dietician’ on the course and the response I got was ‘well this is a weight loss program for everyone and we have to stick to healthy plate’ -cool. Thanks for that . There is currently no specific dietary advice for anyone with PCOS available on the NHS beyond healthy plate. My next option is weight loss injections because I also can’t eat low carb/ higher fat due to non alcoholic liver disease (also something common in women with PCOS).

You need a referral to gyny and don't take no for an answer. I had similar symptoms and was diagnosed with endometrial cancer at age 32. I now have zero hope of having a family.

Please press for a urgent gynaecologist appointment and don't be fobbed off with hormone meds. I was fobbed off for years and got cancer as a direct result

That's sounds very like my friend, who ended up at A&E twice following the NHS guidelines.
They concluded massive fibroids.

So sorry to hear this. Your GP is not helping (they don't these days do they?)

It's not good enough to be told you're anaemic through chronic blood loss and then not seek to correct the blood loss.

I've been through similar although for very different reasons - currently in month 16 of daily bleeding and going for major surgery next week.

I don't know where you live but you'd be best off going to your local hospital Gynae Urgent Care via A&E in my experience. I live on the edges of various hospital trusts and if one hospital is useless, I found it best to switch to another. Some have walk in Urgent Care for gynae others you need to go through A&E. Also you could ring 111.

I warn you, they are obsessed with asking 'how many pads you change' or such which is a bit of a wind-up as it's not about how many pads an hour you're using in this type of situation. Also document and evidence your situation. Sorry it's a gross thing to have to do but take your phone to the loo with you every single time and photograph the blood. I had to quite literally show the gynae staff photos of blood before they believed that I'm daily bleeding - I take iron every day to stop becoming deficient, so they were saying if you were bleeding so much you'd be iron deficient, as if to say I'm lying.

At the very least you should be referred for a scan. I had very heavy periods with clots that effected my iron levels. When I went to my GP I was automatically referred me for a scan.