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’ll also point out that first question I was asked was “have you had your covid vaccines” - just incase that’s something they’ll consider in all of this

When I was bleeding that heavily I had tranexamic acid and mefenamic acid. It worked quite well.

Tranexamic acid (TXA) helps clotting and slows bleeding. My DD has just been through this and has been prescribed Ferritin, Folic Acid and vit B12 injections as she was so anaemic. She has had Mirena coil fitted which has done the trick so far

You have my absolute sympathy.
I bled continuously for 6 months. The only things that stoped it was a hysterectomy.
before that I was bleeding 14-20 days on and 10 days off for several years.
GP was beyond useless. Suggested meditation to deal with the side effects of my anaemia.
I jumped through all of the NHS hoops including having a coil. After 3 hospital admissions they (against my GPs advice) referred me for the hysterectomy and it’s changed my life.
I had fibroids which were growing “rapidly”.
Dont be fobbed off my useless, overworked GPs.

the NHS is very hit and miss, and just like in any profession you sometimes get people who are shit at their job. I had very low iron and the doctor did a stool sample, and off the back of that, a colonoscopy and CT scan!!! It sounds like you have been treated appallingly. I agree that you should go back in and firmly request a referral to gynae.

I hope your appointment went okay and you got the referrals required. It sounds like your case is way more complicated than mine but just to note my periods got very heavy and had clots when my ferritin and HB got v low and once I got an iron infusion went back to normal, bit of a chicken and egg thing.

Hello,
The Female Health Clinic in Esher and London’s Women centre in Sutton might be worth calling, just google women’s health centre and they come up. I don’t know how much an appointment would cost or if you can get there but a centre for women might be able to advise you. I hope you find the right help and support x

My sister has almost the exact same problem as you, and the GPs here are just as useless. She takes norestherone to stop the bleeding, and they won't do anything else. Hers is caused by polyps n fibroids which have been removed before, but have reoccurred. They won't give her a hysterectomy because she's under 40 with no kids. Just keep harassing your GP, it's the only thing thats worked for my sis.

Hi OP I hope all gets sorted out for you ASAP. Just wanted to say that for when you have eventually completed your family, I had an endometrial ablation for heavy periods and I've been very pleased with the results. No periods- yay!

Absolutely in no way want to derail your thread OP but as I am going through almost the exact same thing I just wanted to gently ask something as there seem to be lots here with a fair bit of knowledge about this stuff - would norethisterone stop the bleeding if the cause was something sinister? I ask as I am really anxious about my scan on Monday and trying to get information from the Dr was just impossible. I assume norethisterone works by tricking your body into thinking your pregnant like contraception? It is the only thing so far that has worked for me and OP it worked almost immediately so definitely ask for it! Happy to be told to piss off and start my own thread though

I work in diagnostic imaging. If you are bleeding that heavily and for that long and your GP is doing nothing I'd go to A&E. I rarely advise this, but this is extreme. You need an ultrasound and a Gynae referral. Urgently.

A naturopathic doctor, someone who treats the whole body rather than just symptoms. There are many of you look into it.

Go to a & e good luck

Haven't read the whole thread so apologies if already said, when I had an issue after childbirth and the Gp tried to fob me off, I sat down and said "get me the practice manager, I'm not leaving without an urgent referral to hospital, I'll sit here all day and I'll be back everyday until you refer me"

I was in a lot of pain and totally irrational, but it did work, they called the hospital and I had a same day referral. Sometime you just need to insist! Alternative is A and E, but be prepared to kick ass, sadly it seems the only way to get access to decent healthcare. (my Gp has a three week waiting list for a serious appointment)

Unfortunately private healthcare will not cover you for anything that is already pre-existing. They will write to your GP and have to disclose you already had this problem.

Echo others, go to walk in or A&E, if the tranexamic acid is not working then the dosage needs to be reviewed. I am not a HCP and do not have PCOS but started to suffer similar symptoms after the birth of my second baby. My GP wasn’t that good I went privately to see a gynaecologist for a biopsy (I am lucky enough to have cover as a benefit from my employer so only paid an excess).

I was diagnosed with endometrial hyperplasia and the insertion of a merina coil solved my issues.

You can also insist that your GP refer you to a gynaecologist and/or go via whatever care professional (if it’s not the GP) has diagnosed/treated your PCOS.

I am sorry this is happening to you, it’s exhausting and emotionally hard to experience and leaves you feeling robbed of dignity - you deserve better from your HCP.

go to
a and e
hope you get some help soon
also a Merina coil should help
mine totally stopped my. periods

OP have you ever been tested for a bleeding disorder? I have one. A rare one. Many hematologists missed it. They didn’t do the right tests. Tranexamic acid only works well if you take it back to back every X number of hours but if you take it long term it can lose effectiveness. I would go to a & e.

Not to alarm you but someone I know had these symptoms for a while, she was fobbed off again and again, told endometriosis, PCOS, the usual shit. It’s been terrible from January and 3 weeks ago she was diagnosed with stage 4 cervical cancer and given just weeks to live. She’s 32.

please go to A & E and don’t let them fob you of any longer.

I’m concerned you “love the nhs” when you have had such a horrendous time with your miscarriages, not to mention your current experience. Please please change your mindset and advocate for yourself tomorrow; they’re not doing you a massive favour by seeing you, you’re paying dearly for this via your taxes.

By your age I’d had 6 smear tests. It was also a key part of my recurrent miscarriage investigations.

Hope it goes well tomorrow. You should leave the GP appt and be heading straight to imaging at your local hospital with a scan referral in your hand (I appreciate all trusts are different and that might not actually be possible. It would be in my trust. Failing that I’d head straight to a&e for a scan as per the imaging HCP who posted above)

This sounds awful I really feel for you.

After I gave e birth and went home I bled horrendously soaking through etc. No one wanted to know despite me being told in hospital that I needed to come straight back should this happen.

Long story short, as soon as I got in touch with the compkai to team at the hospital I was back in instantly despite being told this was impossible and had my own room so baby and husband could stay with me. Anyway, my point is you are not being taken seriously either here, file a complaint and they'll have to help you.

Some years ago, in my early 40s, I had a period lasting 4+ weeks which I mentioned to my GP who thought it was best to send me for a pelvic ultrasound scan, just to make sure everything was alright. I had the ultrasound scan a few days later and a large ovarian cyst was discovered. I had it, and the ovary which it had destroyed, taken out two weeks later by a private consultant. The cyst contained borderline changes in the lining as well as two litres of water. It had been developing for the previous 18-24 months, I recall the pain and extremely painful periods which had gone on and on. I had presented to a (different) GP then who did not bother examining me and thought the pain was probably due to a delayed period.

Like others, I would definitely recommend getting yourself checked out including an ultrasound scan, especially if you’re still intending to add to your family. Good luck and all the best!

I had this, bled for 18 months before a locum took pity on me.
I was given mefenamic acid, an appointment for an ultrasound and a gynaecologist referral.
The mefenamic acid got it to finally stop (transexamic acid slowed it but didn't stop it)
At the ultrasound appointment the radiologist was convinced I was pregnant, kept pointing to the "sac" and insisting I was. Kept on even while I told him there was no chance, even had me doubting myself wondering if I had sex and had forgotten...... When the test came back negative I got a shrug and told it must be a cyst.
Gynaecologist saw me, agreed it was a cyst and since bleeding had now stopped just discharged me

Had a few other long periods but nothing as bad and eventually had my second child a decade after my first and I settled back to a 31 day cycle non the wiser

"Finally I was referred to gynae, got some fibroids out, and problem solved."

How did you just get the fibroids out?

I have a deep deep hatred of Queens. But after 30 years of heavy periods, and bleeding for up to 18 months, even on the pill, it was a consultant at Queens that finally discovered I have a blood disorder that was causing it!

I feel for you OP. I suffered similarly. As I said above, it turned out to be a generally fairly benign blood disorder, Von Willebrand's disease, that normally would just cause bruising, but for me resulted in horrific menstrual bleeding. Make sure you raise that as an option, as I was told it's a lot more common that women realise.