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.

If you go on the mini pill then that will reduce your bleeding eventually and could even stop your periods altogether. I'm on Cerelle and haven't had a period in nearly a year. Hope things sort out for you soon xx

Blood pressure is spot on (122/81) but because I’m overweight I have made the point that’s probably low for me if that makes sense? I get ‘hmm yeah maybe’. I’m occasionally dizzy if I stand up too fast and always dizzy first thing in the morning, have to sit for a second before getting out of bed. I won’t walk downstairs carrying my son just in case because if this and have taught him to hold the hand rail rather than my hand in case I ever have a funny turn (this has happened before, he was 8 months old and I managed to put him down on the floor in the middle of the living room before I fainted. He’s 2.5 now and I’ve not carried him up or down stairs since and avoid being on my own with him for long periods when I’m bleeding because I’m terrified something will happen to me).

It's there on the 111 symptom checker heavy bleeding.

Absolutely stress the dizziness/fainting when you phone.

Best of luck. I was admitted/kept in hospital for 2 nights and had several scans and tests whilst I was in. Would have taken weeks as an outpatient . . .

I get this too and it's awful. I've ruined bed sheets and my sofa cover is in the wash so much.

Norethisterone is good for heavy bleeding. Someone mentioned the mirena coil but for me it made me bleed just the same until eventually it fell out because of the heavy flow.

Go and see a different doctor and push for scans and a referral to gynaecologist. There is surgery they can do. You might even have fibroids or polyps.

Best of luck. I also bled on the office chair and its mortifying. Absolutely soul destroying.

I don’t think you should wait that long. Your bleeding is far too heavy. Honestly go to A and E or walk in and take your most assertive friend with you.

Request a face to face appointment.

Say you wish to be referred to gynae urgently due to persistent bleeding, pain etc that is not in line with your long standing history of PCOS.

If you want you can ask for a referral letter for first appointment privately (make sure the nhs is in before this happens though).

Or you can go to a&e immediately.

To be honest you could be a while waiting on a laparoscopy for diagnosis - it can’t be done on a scan for endo/adenomyosis. For cancer you would expect something to come up in the bloods; make sure you get bloods done with gp asap.

You need to take the tranexamic acid consistently for several days 2 3x daily

I just posted exactly the same about “most assertive friend”! I hadn’t seen your post …

Mirena has been life changing for me. My lowest point was standing up off my Dad's sofa and gushing all over his antique chinese rug... he was terrified, bless him.

If you have one locally, I'd recommend a private GP appointment. Our local Winfield charges £55 and you get half an hour of undivided attention - and they can refer you via the NHS system/share notes with your registered GP.

For those saying A & E - have you been in one recently?! It's not the place for ongoing medical conditions.

I have/had the same issue!

I came off the implant to try and have a baby and bleed for months and months. A super tampon would last about half an hour, an hour tops.

We were going to IVF and I was over the 30 BMI so dropped 3 stone to come on just below 30 and that did help a little. I fell pregnant (god knows how) as the bleeding never really stopped until I was about 10 weeks pregnant.

After I had my daughter they finally refered me and they recommended I had my womb sewn up or a full hysterectomy.

Which is great of you want won't any more kids. The only things they recommend mean you can't have more kids or the drugs will stop you. 😔

Please ask for a referral, I like very close to Staffordshire and have received such different care it's unreal. Really seems like a postcode lottery with the NHS!

The only thing that's has ever helped with my bleeding is the implant. The coil made it worse.

Hope you find a solution soon, as very few people know what this is like. It's ruined my life for a few years as it revolved round knowing there the toilet was at all times.

Sending a hug 💐

I had this a few years ago, heavy bleeding for 8 weeks, pcos, also in Staffordshire too

In the end I was flooding so bad I called 111 for advice but there wasn't much they could advise and they didn't feel it was A&E (I agreed)
I had mefanemic acid which didn't help, in the end another GP suggested Northisterine which stopped the bleeding and it didn't start again when I stopped it luckily.
I managed to get referred for a scan too and luckily no fibroids they said it was just a pcos issue.
I've not had it again.

If you did ever look at private then Little Aston hospital has a really good gynae

@Draculaswetdream Hi - sorry to hear you’ve having such trouble with your periods and also not getting any support from health professionals.

You need to ask for an appointment and at that appointment tell them (don’t ask) you would like them to write an urgent referral to a gynaecologist. Make sure you’re explicit about the ‘urgent’ part on the letter.

Sorry to hear this OP. No advice just sympathy. My own iron levels are usually between 4-7, I've been tested several times over the last 4 years and am only ever told to take iron tablets. With a prescription only dose of iron tablets (I've forgotten how high) it only raised my levels to 12. They've said I must have a problem with absorbing the iron but to continue taking them. I gave up and just accept a life of low iron now, I stopped taking the tablets when I started suffering from severe constipation when pregnant.
I hope you're able to get this sorted 😔

I'm so sorry you've had such crap treatment so far. I'm not going to give any medical advice but when you manage to get a GP appointment I would suggest taking your husband with you. It's ridiculous that you should have to but he can advocate for you if you get emotional and can highlight the impact this is having on the whole family.

Also see if there is a doctor at the practice that specialises in women's health as they might be happier to refer.

And this might not be a great idea but could you request a sick note? They might be more willing to refer if you are saying you can't work because they're not doing anything to improve your symptoms.

Ask to have a mirena coil fitted - and the meds sound like tranexamic acid - prescribed for heavy periods and excessive nose bleeds.
Both combined worked for me very quickly.

You need to be very firm with your GP and insist on a gynae referral. Also I know you don't want to but I think you should go back to a&e next time you flood like that. I work in a related area and this is not normal. Does your local hospital have an emergency gynae unit?

@Westillaremadeofgreed Once your levels are at 12, instead of stopping them altogether due to constipation, you could try taking Vitabiotics feroglobin gentle iron capsules.

Tranexamic acid helps to create clots so can reduce flooding a

I used to get really heavy too. you need to take it the day before your due on for the best results. But take it anyway

sorry if this has already been posted and that you are having such poor treatment

There is no ‘due on’ in my world, cycles can be anything from 29 days to 170 days long, usually around 35 but if I’m not testing for ovulation all cycle it’s totally unpredictable unfortunately.

Go to A&E if bleeding a lot, my daughter needed an emergency transfusion after bleeding for 26 days straight from her first period

@Itonlytakesaminute
I took northisterine when I was going abroad during menopause as my bleeding really random and heavy. Stopped them completely!

only anecdotal but I believe that’s what triggered them stopping

I had those exact symptoms when I had an unmedicated underactive thyroid. No periods for a bit, then bleeding for months. When it got worst the womb lining would build up and then all come off in big chunks at once - a super plus every hour. Then we'd be back to slight but constant bleeding. Scans and all sorts.

First of all, I’m so sorry you’re going through this. It absolutely baffles me that still in 2023 womens health is so underfunded, you really do have to push for every little thing to be seen and taken seriously and that shouldn’t be the case at all. A few pieces of advice from my own experienced navigating gynae care:

1. The pill will almost definitely help with the bleeding, but it isn’t a “cure” as in it won’t fix whatever is actually causing it, it will just mask the problem, but that may be good enough for now while you sit on a potentially years long waiting list to be seen, so do consider that.
2. Request a referral to gynae- do not settle for anything less. Go armed to your eyeballs with knowledge and facts, you almost need to go and tell the GP what YOU believe you need to happen. They can of course choose to disagree, but they have to justify that and put it in writing. You will find 9 times out of 10 once you ask them to explicitly say you do not need xyz, with the threat of PALS etc there, they will just make the referral because they cannot possibly know for certain that you don’t need it, so most won’t risk it. Take the emotion out of it at your appointment, easier said than done I know and it should make no difference, but the GP is much more likely to take you seriously when you turn up calm, armed with information and ready to discuss, than when you are emotional (I have done both).
3. I know you have said you can’t afford private treatment but as an alternative to totally private treatment, I would recommend booking an ultrasound womens health scan yourself. There are a few clinics which do this near where I am at least for around £85 and they offer payment plans, they provide you with a full report, which you can of course then take to your appointment when you get one. This is what I did and it essentially allows you to “fast track” because I had to wait 11 months for my gynae appt (and that was an “urgent” referral- its not quick), the first appt takes basic details and then arranges for scans etc. By having already had that scan, I saved myself waiting 6 months for my scan appointment and instead went straight into bloods and possible treatments.
4. Do everything you can prior to your appointment. They can and will blame absolutely everything they can for the issues, the most common being BMI. Do everything in your power to get that into healthy if it is not currently healthy, or at least on the way there so that there is no easy and convenient excuse for them.
5. Take irrefutable evidence. If you’ve soaked through 5 pads in an hour, take photos and show them. If you’ve bled through onto your bed, take photos and show them. Keep a diary log of every time you change pad/tampon- show them. The more evidence you have the harder for them to ignore. Some people do exaggerate so they will tend to take things with a pinch of salt- make sure there’s enough proof that they HAVE to believe you as a fact.

My employer's health insurance doesn't require an initial questionnaire, but any pre-existing conditions are excluded from the cover until you've been in the scheme for two clear years.

It doesn't matter how long ago you had a particular condition, or if it's never been a problem since - the rules say you need to have two clear years in the insurance scheme with no symptoms of that thing, before you can claim for any referral related to it.

A woman I work with had bleeding like this and after a lot of back and forth to her GP it was picked up that she had polyps covering her ovaries, she had them removed and has been fine ever since.