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.

Are you on metformin?

Ibuprofen does seem to work but only lasts a while

So pleased to hear this. Really hope you get the help you deserve, nobody should be going through this.

I’d go to an and e with heavy bleeding that won’t stop. Good luck xx

OP what part of Staffs are you? You don't have to say what town, just area. I'm South Staffs. My GP trust (Midlands Partnership) still does smears every 3 years not 5. When you see your GP tomorrow make sure you stress the importance of the referral but also ask how to book for a smear and explain you've never been sent. You may get in in the next couple of days for it (although I don't know how it would work with the bleeding) but stress you still want the referral and the smear is not a replacement. Have NICE guidelines screenshotted on your phone or printed off to refer to. If you still get nowhere complain to the practice manager. Good luck!

Oh, I feel for you. This was me in January. I bled until May. Everything they did with you, they did with me. In June I had an ultrasound which showed a fibroid. No further investigation.

I was referred to a specialist in gynaecology and I'm still waiting. I'm in pain every day and it flairs up. The bleeding has slowed, but I took a lot of medication to get here. I'm thinking of you. X

Write down dot points OP.
it sounds like you’ve had horrendous ‘care’ over the years from doctors. I agree, it sounds like fibroids to me too.

Ask your GP for Tranexamic Acid. It won't stop your problem, but it should stop you flooding. I've been there- really feel for you x

Huge sympathy. When my DP had a problem it was "this is stopping me from working" that got the referral.

I had this problem, irregular heavy bleeding and bleeding out of period cycle. I too was dismissed as having PCOS related symptoms. asked for gynaecology referral and they said it was nothing despite doing scans. Went private and found out that I have polyps which had to be removed surgically. NHS is shit. Go private if you can get insurance.

Have a look at NICE guidelines, print them and take them with you to the gp and highlight what is applicable to you and the expected outcomes I.e. referral for imaging or further investigation, they can't really argue the toss then

https://www.nice.org.uk/guidance/ng88/chapter/Recommendations

I would present at A&E, I had a baby Tuesday and Im currently getting through fewer pads a day than you are. I really hope you manage to get some help. I know no end of people with gyne issues that keep getting fobbed off x

Private consultation £200 approx.

I just came across your post op. I bled nearly constantly for 2yrs after i had my 2nd son. Stopped for about 3/4weeks when he was 4months(turned out i was pregnant) miscarried and bleeding continued. I just kept getting fobbed off with different contraceptions. I had the jag, implant, pill to try stop it but nothing worked. Had my smear and came back with abnormal cells. Got them lasered Off my cervix and low and behold my bleeding had stopped by the end of the day and that was it. Normal periods with no bleeding in between. I still swear to this day if I didn’t have my smear and laser treatment i would still be bleeding. Hope you get answers soon i know how draining it can be x

Gynaegeek on Instagram might have some advice…could always try DMing?

I had similar op, but later in life, towards the end of menopause in late forties. I could not even leave the house and by the time I got to the GPs I was in a terrible state. I was lucky, female GP was shocked and sent me to hospital. I was given medication to stop the bleeding but of course this does not solve your problem op.

I had an investigation internally and they could look at my womb on screen. They could see that I had a problem with thickening lining in my womb which took a long time to shed basically and resulted in horrendous lengthy periods. Sorry TMI there. I know you will not be the same but I am at a loss as to why they are letting you suffer like this.

My dd has had poor treatment following a traumatic birth and they will not even let her have painkillers now for fear she will become addicted. It seems to be guidelines they are following but there seems no room for empathy, kindness and support for women at present.

When I had regular flooding, I found a mooncup was better at handling the flow than a tampon. Still needed pads as well, but it reduced the clothes staining massively. For me it also reduced pain - no idea why.

Obviously you need to work out what is going on and causing your problems, but just in case this is useful in the interim.

Usually doesn't cover pre-existing problems.

That's great. Is your husband available to come with you? I hope it goes well.

He’s not unfortunately, he’s got our son while I go alone but that’s ok, I’ve written everything down.

@Draculaswetdream if it’s a ‘whole company’ insurance scheme, as opposed to an individual ‘personal scheme’, pre-existing conditions don’t usually count.

In reverse, if leaving a company scheme for a personal scheme, eg on retirement, pre-existing conditions will count.

So, a friend continued working until she was 5 years clear of cancer, then she retired and was able to take out private insurance without penalties bc insurance companies must disregard a cancer diagnosis after 5 years clear.

Sorry, so what I should have said -you probably will automatically be able to access private care for this once you’re in the scheme.

Seeing people mention the coil which I would personally avoid, I have it and my periods are 10x worse.

When you call the DR’s ask to speak with a female DR…they are generally a little more understanding.

I was exactly like this for 9 months. I saw a private gynaecologist in the end and has about 14 polyps removed.

Pleased you've got an appointment.

It may have been suggested already but I found my local sexual health clinic to be far more helpful than my GP when I experienced severe bleeding due to fibroids. Same as you, it was just flooding. Tranexamic acid didn't help. I had a Mirena coil inserted by them and haven't bled since.

Hi OP I'm sorry that you are going through this. I used to suffer from very heavy periods (nothing like yours, but enough to be anaemic) and the mirena coil was a game changer. Not had a period since (and as I'm not in the menopause I hopefully never will again!). I don't know if it's suitable for you but I really hope you get it sorted. Lots of good advice for you here