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.

Thanks all, you have been more help in an hour and a half than my GP’s in almost 3 years.

This is the plan:
Submit new online triage form for a GP appointment at 8am tomorrow morning and specifically request an in person appointment urgently

If they come back with a phone appointment or longer than a weeks wait, call the surgery and explain/ demand to be seen as an emergency due to low iron/ fainting etc otherwise i will need to present at out of hours or a and e and will explain the reason is because GP refused to see me for heavy bleeding, against NICE guidelines.

When I get an appointment, ask for the blood tests mentioned and a scan, plus a referral to gynae, but stress that I want the tests booked in and completed so that if the gynae referral is a long wait I’ve at least got some answers in the meantime and can go to the gynae appointment with a head start.

Ask to be put on something to stop the bleeding, whether that’s hormonal contraception or the coil I don’t care. Need to reset my cycle and stimulate a more normal ovulation at the expense of fertility for now, but with a view that we will want to try for another baby in the near future when things have settled down.

I think that’s it?

Yes this is an appalling response from your GP.

I don’t have much advice and I hope you get sorted soon. I don’t know if this is allowed but I’m going to recommend Beneden to the thread, it’s like a credit union for health, it’s about £12 a month, there are no health questions and after 6 months if your GP thinks you need a referral to a consultant and the wait is more than a certain length on the NHS they will cover a private referral. It’s great for things like gynae, rheumatology, endocrinology, cataracts. I know loads of people who have been able to access care, I appreciate in the current climate even that amount a month might be too much. I do know people who have been referred for xyz to be told the wait is 2 years, join and have the care sooner. I don’t work for them and have no affiliation other than thinking it’s an option for people. Oh there is also a GP helpline I think you can access from the first payment as well.

I do hope you get some help soon

Agree with taking the soaked pads as well

Pelvic ultrasound and gynaecologist consultation was £500 for me this year. NHS were not looking after me. It’s an expense but if you can do it I would recommend

routine wait Referrals to gynae in my area are 8-14 months.
I don't think OP wants to wait that long.
I'd go private.
I hope you come back & let us know what happened, OP.

When I first went to my GP I wasn't really breathless and didn't think I was overly tired. Just got on with doing stuff day to day. When my blood test results came back she was surprised I was even able to get up every day as my ferritin was 4. I tried iron tablets but they just really upset my stomach. I tried Spatone but it wasn't enough to bring up my levels. I've had several iron infusions and a blood transfusion which really helped. As an aside, I was very teary with the anaemia and I had incredibly itchy skin and high anxiety.
My heavy bleeding and massive clots is due to fibroids and polyps, and they aren't that big. I would push to get your GPs to make a gynaecology referral stating that you have tried everything they have suggested and it isn't helping. Good luck and I hope you some help soon💐

Ring and ask for noristherone to stop the bleeding. It's used to regulate periods in pcos it can bring on a period/ stop heavy bleeding.
Try and get on metformin for pcos too. I use to bleed for weeks and now I'm regular

Have you had a blood test to check your estrogen levels ?

You poor thing, I'm sorry for how badly you've been treated by your GP and dismissed.

If you don't want to go A&E and sit and wait I strongly recommend calling 111 as they can triage and book you in which will reduce the waiting time.

Make sure you emphasise the level of blood loss and other symptoms.

Really hope you get seen too and a plan is put in place for you x

Another warning about private medical insurance including Benenden.

Depending upon the type of cover your employer uses at best you will need to have 2 clear years of no symptoms before you can claim. At worst (and more usually) you will not be able to claim at all because it's a pre-existing condition.

I am so sorry you are having the brush off from your GP and I hope you get some satisfaction tomorrow

Years ago when I was diagnosed with PCOS I had a hormone test on the 14th day of my cycle, assume that would have included oestrogen?

Must also remember to get thyroid checked, I didn’t realise that could cause bleeding.

Do you have the NHS app? What was you last HB on FBC? It doesn't usually have a decimal in it, normal range is greater than 115, but to require treatment it has to be a quite a large under that. It with a decimal isn't a UK standard FBC result, so check on the app exactly what it is if you have it. If its under 80, then go to A&E and say your experiencing heavy PV bleeding, your last FBC HB was X, they can run an immediate blood gas on you, which gives an accurate HB and they can transfuse. Then give you something to help with the current bleeding whilst you arrange more longer term solutions with your primary care provider.

What a bloody useless GP. I have been to A&E before for endometriosis flare ups and have been admitted several times for strong pain relief. If it continues I think A&E or urgent care should be your next port of call. You will at least be reviewed by gynae that way

My friend went to A&E with severe flooding. They were very helpful.

As a GP - I would be doing as this post but asking for it urgently due to the duration and heaviness to identify why this is happening . I would also offer you something to stop the bleeding - get back in touch with your surgery ask if possible for gp with interest in woman’s health

Have you been scanned after roost recent mc ? Is there a chance of ectopic/pregnancy ? Demand gynae or get a private scan then take them the findings and demand

I also thought a gynae emergency dept might be helpful (having been advised to go to my local one if I had a problem recur)

I don't have any experience of Staffordshire hospitals so can't speak to how good it is, but it seems there is a gynae emergency dept in Stafford at the County Hospital https://www.uhnm.nhs.uk/our-services/gynaecology/

@Draculaswetdream I won't give you my long medical history but I take noristherone permanently for a similar issue. It works like a treat.

I’ve had persistent gynaecological problems which have been ignored and I was at my wits end. I paid for a private consultation with a consultant gynaecologist, he referred me straight into his NHS clinic. Try and go private in the first instance to get things moving. You should have this investigated.

I think it is fibroids too, it’s a joke that you cannot get a scan. In my area they are available the same week.

Norethisterone will not stop it but it might slow it somewhat. Have you tried Norethisterone?

Double maxi pad side to side, and try the black ladies pull-ups Tena as this much bleeding is uncontrollable

Good luck x

Please just go A&E the flooding is a corner of concern. If it was your kid you'd fight for them, fight for yourself

My last miscarriage was before my son was born, I’ve not been pregnant since. They checked for RPOC during my 16 month bleed and didn’t find anything.

Hi OP, sorry you’re having such a shitty time.

I could have written your post a few years ago. I was diagnosed with PCOS in my 20’s after years of irregular / absent periods and up until my 30’s and my first child was born, I never had heavy periods. Then boom, as soon as my periods returned postnatally I had extreme bleeding and flooding. I went on to have my second child 3y later and after they were born, it got so much worse. I was incredibly anaemic (7.5 HB and my ferritin was just 2) and I felt truly awful and started to feel like I couldn’t breathe deeply and had zero energy. I took tranexamic acid daily, the point of it is to slow down the flow of blood, not to completely stop it. For me it did help a times to reduce the flow so I wasn’t flooding, but like you I would have these episodic major floods, with huge clots. The pain was never terrible, but I was so, so tired in the end. It made me feel like a shadow of myself. GP was frankly useless and in the end I paid to go private, using a credit card. It got me through the first appointment and scan and then I moved back to NHS. They put a Mirena coil in, which helped to reduce the bleeding to just spotting for 6 months, but that then failed (embedded itself!). After scans and a laparoscopy and various checks they thought I had adenomyosis as there was no fibroids or indeed endometriosis showing up anywhere. I was offered either an ablation or hysterectomy - the former can fail long term for adenomyosis, so I went for the hysterectomy as I couldn’t cope with any more years of bleeding, tablets and the anaemia was doing me in. I didn’t want more children though.

You absolutely need to find out what’s going on ASAP - is there anyone who could lend you the money to get your foot in the door privately to start you off? Waiting lists for NHS Gynae can be very long.