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.

I don’t think you did anything wrong posting it here. You don’t have to keep someone sending you abuse private. I’d make sure you also report it to Mumsnet though. Sorry that happened to you!

Hi OP I think it sounds like fibroids! I had the same symptoms and it was a submucosal fibroid in the uterus. My bleeding was so bad that I passed out and had to get taken to hospital via ambulance and have a blood transfusion. Before this I was referred by GP to gynae teams for an ultrasound where it was diagnosed. I know the wait time is horrific at the minute for gynae but you need to try Norithisterone to control the bleeding (it was the only thing to stop mine but even then I had to physically push my fibroid back into my body every so often until it was time for surgery). Bloody nightmare! Literally haha

Has anyone checked your progesterone levels? They may be low.

I feel for you OP. I bled for weeks and was convinced I( would probably bleed to death until my understanding GP flagged me as a "cancer risk" and got me in quickly to see a Consultant Gynaecologist who removed a bleeding Cervical Polyp. Hope you get to the bottom of this.

@Draculaswetdream I was in Staffordshire also (Potteries area) as a young woman with severe PCO S and continuous heavy bleeding and flooding in the early Noughties. Wasn't taken seriously at all. Eventually through a stroke of luck (or blessing as I call it) I ended up seeing a consultant in another part of Britain and they took me seriously. I tried lots of contraceptive pills but finally found one that suited me. My situation is a bit different to yours as children have never been on the menu. I hope you have some joy.

I had 3 years of this after my 2nd and ended up having sterilisation and ablerlation at age 28 no problem after until I hit early menopause at 40 and they said well you pushed for the previous op ! Yeah my entire family hit menopause at 40 so it was the abelation that caused it 😒 you have to be pushy and annoying to get anywhere with the GP

Op, I’ve not read full thread, but I had (and still having) horrendous years of extreme heavy bleeding, so much so that after a blood test, my GP phoned to tell me to go to A&E to get a blood transfusion. Please go and see a gynaecologist ASAP if you have private health cover.

Haemoglobin of 8.1 and heavy bleeding = urgent gynae referral. When you speak to your GP be sure to mention low haemoglobin NOT low Iron. Low iron (Ferritin) is not urgent.

Be sure to ask for an URGENT gynae referral, not routine or you'll be waiting months.

I hope they don't fob you off with further blood tests and actually do the referral. If they do both, then great, but remember the referral is more important.

Be sure to emphasise that you're wearing maternity pads and what actually happened at work and that tranexamic acid isn't working.

I had exactly what you ate describing in March this year. 40 days+. Bleeding continually but periods of 12 hours ish where I was basically housebound (flooding through my clothes on a 20 min round trip walking to nursery with a cup and a nighttime pad). Up 4/5 times in the night to empty my cup/change my pad. GP did urgent gyne referral and gave me the acid tablets (they didn't stop it). Had an appointment 4 weeks later, internal ultrasound, large fibroids but I was told my ONLY option was contraception so I had to decide there and then if I wanted the coil. So no more babies for me but I couldn't go on like that (I'm 37 so won't be having one in 5 years when my coil needs changing). I still get 3 days of heavy bleeding a month at the start of an otherwise normal 7 day period. If it is fibroids you need to ask them what they can do to remove them if you want another baby. My options were presented as hormonal contraception or live with it.

Why don’t you speak to your local gynae ward nurses tell them GP won’t refer you. Ask them what should you do? Worth a punt

Great advice already OP. I only offer the following as an alternative avenue should it be helpful:

I also had continuous bleeding the GP didn't take seriously (although nowhere near the extent as you/slightly different presentation). Kept getting told stress affects periods, even when I was insisting I wasn't bloody stressed outside of bleeding every day all day.

It was worse after sex so I went to a GUM clinic walk-in as their criteria included "bleeding after sex". Saw an amazing Dr who told me in no uncertain terms it's not normal to bleed every day, I should never have been told that, and after an examination they wrote a letter (there and then) for me to hand to the GP stating I required an urgent smear (to rule out cervical cancer) and an onward referral.

Im an nhs nurse and this is appalling.

I recently had new onset of abdominal pain and new bleeding ( I have the mirena coil and had no bleeding at all for years). My gp mainly uses a text system but as soon as I told them that the gp text me and said I needed to be seen immediately as it was new prolonged bleeding. They brought forwards my smear, had me in for another vaginal examination the next day and took swabs and referred for an ultrasound and they couldn’t find my coil strings either.

I was told the ultrasound waiting list was 8-10 weeks but by some miracle they rang one day with a same day cancellation, however I was told if I had needed a gynaecology referral for my issue the standard current wait for an initial assessment and consultation was 12-18 months.

absoloutely appalling, I know the pressures services are under but I genuinely believe there’s a lot of health discrimination with women especially in gp’s. My current gp is good but I’ve lost count of the amount of times in the past that any issue was put down to women’s problems or hormones. I was out on the pill at 13 for excessive bleeding without investigation and the amount of times I’ve had low iron and was told it was because women menstruate and I had to point out it wasn’t dietary and it wasn’t due to bleeding as at the time I wasn’t having periods on the mirena coil.. Even mental health struggles I’ve had in the past have been blamed on female hormones

Please please go to A&E and insist on a scan.
I went through numerous miscarriages, I have an odd shaped uterus, fibroids, cysts, adenomyosis, sticky blood, endometriosis etc and had surgeries after several of the miscarriages, extremely heavy bleeding on and off for months, went on to get pregnant and miscarry again, surgery again, was bleeding extremely heavily again so had an investigative surgery where they found most recent (7 week) pregnancy and also the previous (13 week) feutus still in there, Drs were confused to say the least but I went through UTI’s bleeding, infections etc for weeks/months between the 2 pregnancies.
Also, in regards to recurrent miscarriage, are you under the recurrent miscarriage team at your local maternity hospital? I was under Liverpool Women’s who put me on progesterone, daily mini aspirin and blood thinning injections and I went on to have my son. I did have GD and a PE and blood clots along side a lovely dose of HG but he’s here 😅

@Draculaswetdream It makes me so mad that womens health concerns are brushed off like this. Keep pushing and be assertive. Take photos of the flooding for evidence.
On a side note, did you know pcos is linked to insulin resistance? Insulin resistance can br reversed with intermittant fasting. Please read Fast feast repeat by gin stephens and The Obesity Code by Dr Jason Fung, it really might change your life. All the best.

This, came on to say you need to have your cervix checked ASAP, OP.

A private appointment. The NHS is not fit for purpose.

I was seen by the recurrent miscarriage team after my 6th miscarriage and told the issue was PCOS/ incompetent cervix and I couldn’t get any further help unless I was under 9 stone in weight. I was 18 stone at the time and had never been under 15st.

I went on to have 15 miscarriages in total, most before 12 weeks but 2 in the second trimester at 15 and 18 weeks. In the pandemic, I fell pregnant with my son and because I was working from home, I took it upon myself to stay horizontal for 16 weeks. I think I lost my mind a bit, I was desperate for him to stick and got it into my head that if I ran about like normal I’d lose him. They agreed to put a stitch in my cervix once he was big enough. I had the stitch at 17 weeks, I carried him to term, they took the stitch out at 36 weeks and he was born at 36+2, 6lb 11oz and absolutely perfect.

And also I would suggest you likely need a scan, they must identify the reason for this excessive bleeding, it could be hormonal, but there could be other things going on which a scan might pick up.

I had a friend who was similarly dismissed by the Dr and she went to a walk in Sexual health clinic (I think) and asked what to do and they were extremely supportive and performed lots of tests.

I’ve never had a smear test. I’ll add that to my list of demands.

What! Is that by choice? Or never being called up for some reason such as by error? Are you of smear age if you don’t mind me asking

You literally have to be offered one every 3 years. This is looking more and more like a lawsuit at this point!

GUM clinic. That's where my friend went to.

Im 32, I’ve never been called about one? I’ve changed HP a couple of times could thst be why?

No I’ve changed gp lots and always been called up by letter and it’s even more important after pregnancies. Please please get in touch with your GP about it, especially with what’s going on. I bet they’ll crap themselves once you tell them you’ve never been called up or had one despite all these issues! Smear uptake is monitored too for statistics so this is absolutely absurd