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.

Omg so glad you have a plan OP, this is absolutely appalling. I so hope you get some answers and help very soon. It's scary how women's issues are ignored like this

I think (it is all sooo interlinked) low progesterone can affect the thyroid uptake...which then affects oestrogen/progesterone balance....leading to excess oestrogen.....excess/unbalanced oestrogen = heavy bleeding.

Worth thinking about if you have any other thyroidy symptoms (coldness, tiredness, hair loss). Though these of course can appear with anaemia.....

So it could be your thyroid screwing stuff up
Or it could be your progesterone/oestrogen screwing things up.

They checked for RPOC during my 16 month bleed and found nothing.

Ive just checked the NHS app and this is the blood tests they requested and I had taken last week - can someone tell me what I need on top of the below?

Ive also just found out they found lesions on my
liver on my last check up for NAFLD which I didn’t know and haven’t been contacted about - I’m guessing that should have been communicated?? My liver scan was 2 months ago and I’ve only found out there was a problem because I’ve just checked the app! No I’m freaking out about that.

I’m no expert but have had some bleeding issues over the years.
I’ve had a uterine polyp in recent years, but bled more continuously with just plain old hormonal issues which the pill helped and also pregnancy.
Def go back to GP and at least get referred for a pelvic ultrasound.

Hair loss? YES. My hairline is receding and it’s thinning a lot at my parting, I thought that was due to increased androgens with PCOS though?

Hair loss can frequently also be due to low ferritin. With the amount of blood you’re losing I’d be surprised if your ferritin isn’t very low.

Not helpful with the other stuff but to reassure yes thinning hair is a really common PCOS symptom too due to the androgens! Have you joined your local Verity group on Facebook? I’ve found mine really helpful for locating assistance with women’s health and PCOS in my local area.

Oh bless. I'm sitting on my sofa recovering from a hysterectomy I had 10 days ago for heavy periods.
I'm sorry your gp has been so useless. You need to push for a gynae referral and I think your gp can request an ultrasound at the same time. Neither will be very quick I'm afraid, so if any of the pp hints on medical insurance or paying private will give you a better outcome.
In the meantime standard first attempt is a mirena and tranexamic acid until they can work out where the bleeding is coming from. Mine was fibroids, all over the place ranging from 1cm - 8cm. I tried various things but the hysterectomy sorted it (I'm in my 40's) and done having children.
They should have given you a raft of blood tests as well. I'm astounded they were so awful and angry. I'm sorry I didn't read the full thread so apologies if this is just repetition.

ER/A&E now!!

Thyroid. It’s been said on here already but hypothyroidism can cause heavy periods. Also important to know about if you’re planning more babies, as it can be implicated in miscarriages.

Also, if the bleeding increases at all, and I would say it sounds already very heavy, I would reiterate that you should consider A&E. A few years ago there was a woman on here with heavy bleeding, who put off going to A&E and only just got there in time to prevent a catastrophic situation. She came back later to say it saved her life. I think there’s a tendency to think that heavy vaginal bleeding is not as concerning as blood from elsewhere.

I started to lose hair when my iron was 8.
I took my feroglobin and tried biotin supplements for hair loss and also upped my oral dietary iron. When taking your iron, don’t consume dairy together or around the same time - it prevents iron absorption.

Eventually, my hair came back a lot and my iron went up but not enough so I’m still taking supplements daily - but gentle ones on the stomach.

As previously said, this can be due to low iron and/or hypothyroidism - and hard to tell which comes first when they are together.

I don’t know if this would work for you but I have endometriosis and take the progesterone only pill continuously and get no periods. It’s the same idea as the mirena but I can stop at any time.

Your Hb is 8.4, that's bordering transfusion. Can you get to a and e?

Hi OP

I had very similar during COVID (I also have pcos). Luckily we were wfh as I wouldn't have been able to go into work it was horrific.
Bled heavily with huge clots non stop for 90 days, tampons literally fell straight out, severely anaemic, it was hell.
Trans(sp?) acid didn't work for me either. It stopped the bleeding but as soon as I stopped the tablets it started again just as bad.

I was referred to a gynaecologist but tbh all she offered was the pill or a coil anyway.

I started on the mini pill and it stopped my periods dead. Such a relief.
Hope you can get it sorted. If you're wanting to TTC maybe ask about the pill for now.

I had a lot of investigations into this over the last couple of years. Never figured out why but the mirena coil and a tweak to my thyroid meds solved it. Have they checked your thyroid?The first (male) GP I saw wasn’t very interested but the subsequent female GP was amazing and seemed to be interested in solving it. Have you seen more than one GP?

Cervical smear
Blood screen and count including hormones
Referral to gynae
In that order

Go to a and e.

Seriously.

You've very heavy bleeding, plus you're already anaemic plus your gp isn't investigating. No one should be left like this. If you were my sister, I'd take you there myself.

This isn't this time to be thinking 'oh bit the NHS shouldn't be used like this, it's not enough for a and e" you should be thinking "I'm anaemic already, I'm bleeding heavily so it's getting dangerously low and I could be in real trouble here, and I feel shit plus I've asked and asked for help and no one is helping and I'm getting desperate"

The more anaemic you are btw the more you bleed...

Your poor thing, this can't go on any longer.

Definitely could be thyroid related- hypothyroidism can cause bleeding, hairloss, tiredness etc and sadly can be related to infertility and miscarriage. I'm so sorry for your losses x

You absolutely need a referral to gynae, you need the opinion of specialists to sort this out, especially after so many losses.

My only advice for thyroid results is check that they're absolutely spot on- you can be 'off' even at the lower end of the range. I believe the number for TSH should be between 0.5 and 2.5m but check this against a few sources. If it comes back out of those ranges, request to see an Endocrinologist too. They're mostly useless as NHS treatments are limited, but they could help with your gynae problems.

I briefly scrolled past a PP saying you should finish your family before getting the coil- that's not necessary. The coil when removed doesn't affect your fertility.

And I've had iron infusions twice due to severe anaemia due to bleeding - I'm not just advising a and e without experience. I felt FUCKING FANTASTIC after the Infusions. I was lucky to have completed my family and I had ablation surgery this summer which has changed my life totally

You need to see a dr asap. I’d go up to A and E honestly and I don’t often say that

I have something called Adrenal insufficiency. One of the signs is craving salt and I craved salt water and infact used to drink salt water even if it made me vomit. That’s how much I craved it….I had a bleed post partum and that’s why I ended up with it but when I told the go she aaid

’hmmmm. Never heard of that before but you’re probably just depressed after having a baby….’

i now work with endocrine doctors so that others don’t go through the same myself

honestly once you’ve had a baby everything is equated to that. I almost died because they would not listen…

Go to A and E and say you feel faint as well.

i used to pour with blood, ended up having a womb abration,like a micro wave of lining of womb only get a 2 day dribble after that,but you would have to be at end of completing any family you were having,is their a more friendly doctor in your practice, you cant carry on like this

A few ideas
Does your GP do e consult? Because you say you get emotional in appointments sometimes writing it all out gets it all there - and ours asks what you hope to get out of the consult - your answer would be 'a referral to gynaecology'

Alternatively maybe an appointment at family planning clinic - say you want a mirena coil to try and stop the bleeding, they tend to have a gynae doctor there and while a mirena is often an option to try to reduce bleeding it may also fasttrack you in

I'll be honest I was having similar and when I got to see the GP they referred me to the gynaw doctor and I was seen really quickly - however I am a midwife within the trust so I may have got bumped up the list (while you could say it's preferential treatment - and it is - it was also because they wanted me to be able to work - I was soaking through tampons, pads and clothes a couple of times a day 6 days out of 7 - it was horrendous

Because I didn't want any more children (I'd had issues with a mirena before so didn't want that - but my issue was very rare and wasnt bleeding related) I had a uterine ablation where they burn off all the lining (I did had a small fibroid but not big enough that it should have caused that issue) - worked wonders 2 3 days of SPOTTING in a year