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.

Well, at least you know, and hopefully they can get it under control now.

I have to say a friend of mine needed a hysterectomy to fully resolve the problems she was having, but honestly even that would be better than what you've been living with.

@Draculaswetdream I had heavy bleeding and had an endometrial ablation. I think it's relatively new that it's often done for heavy periods. It means the person probably won't need a hysterectomy, and is a less extreme option. They remove the womb lining. It stops or reduces the person's periods.

I've had no periods since January, it's great. No strugging with the flow anymore. Hormones etc are the same so it doesn't bring on menopause.

You're out the same day.

I'd highly recommend this if they suggest it.

I want to retain my fertility if I can although I think that possibility is very quickly vanishing

I've never heard of endometrial Hydro?? Whatever it was.

I'm fingers cross 🤞 they can help you without loosing your fertility.

This must be so worrrying but I’m hoping for the best outcome, and that you can retain your fertility. ❤️

Currently going through something similar,
not quite as extreme but also anaemic as all get up and bleeding over a similar length of time / severely heavy. Also query endometrial hyperplasia.

For me, treatment plan is as follows (also planning on trying for DC number two soon so fertility top of the list too);

• iron infusion to get HB and ferritin back up quickly. Tablets take a long time to work and it's affecting my health.
• hysteroscopy with biopsy to confirm if it's endometrial hyperplasia.
• curretage at the same time, essentially removing the lining of the womb. Not the same as ablation (which is permanent), just clears you out for the moment and will stop the bleeding.
• likely progesterone for at least the short term to prevent lining over-growing again.

OP is it HYPOplasia or HYPERplasia?

It seems your case is hyper (essentially overgrown lining) but what you said, hypo is undergrown…? 🤔
Make sure you’re clear at least for your own records.

Regardless of that, I’m so so happy that you’re starting to get answers and everyone is lovely 🥰

Sorry! HYPER. I’m very tired

This is good to know - was all this done as an outpatient? Wondering if they’ll discharge me, or do the procedure then discharge?

I’d insist they do everything now.

Also on this: I can’t fault the staff they’ve been flawless. I’ve largely been left to my own devices given I’m young and able bodied, but they’ve checked in, done my obs regularly etc and one male nurse is as intrigued to get a diagnosis as I am

Good nurses will always advocate for their patients. This is great.

This is poor. But you need to stand up for yourself and be firm. Maybe take somebody else with you to the appointment like your husband or mum - they won't like that because then there'll be a witness and you can ask for a referral or for a second opinion.

you could also email the GP practice manager, and ask, because once you do that and put it in writing once again, they won't like it and will hopefully action it.

but you need to be very insistent, polite but firm.

Norethisterone or Provera short course to slow the bleeding down then mini pill stopped it for me after a year of bleeding and then flooding etc.

Yes, outpatient, I was never admitted. Your treatment plan might not be identical of course.

Whether they can do it before discharge is going to depend on theatre availability for a hysteroscopy, amongst other things. I don't think they can really discharge you without getting the bleeding under control one way or another. It will also depend on whether they are prepared to do the hysteroscopy prior to getting your iron up - I was told HB needed to be above 10 if they were going to sedate me etc for the hysteroscopy, which was another reason for the iron infusion.

Please ask them if they are certain that this is endometrial hyperplasia or Adenomyosis. If it is indeed endometrial hyperplasia, please note that this is considered to be a pre-cancerous condition. I haemorrhaged after my last c-section (twins) and bled non-stop for eight months. It would seem that some things don’t recover from childbirth and I ended up having a partial hysterectomy so that I still had the hormones but none of the symptoms. I never looked back.

I second this. Everything moves faster when you’re inpatient.

I’m glad you have some answers. I hope you manage to remain able to carry a pregnancy.

I had an ablation to try and stop my bleeding but it failed and the lining has grown back, I am awaiting a partial hysterectomy (ovaries are staying), I’m just waiting for a hysteroscopy for some biopsies before I get booked in for surgery.

I think terminology here needs to be used with care / context. It depends on the type of cells that are over growing (hence a biopsy) and, even if it is atypical growth, it can only lead to cancer if left untreated or if it repeatedly reoccurs despite first line treatments (and even then not a guarantee). I'm not saying that "pre-cancerous" isn't accurate terminology, just don't want OP to panic as "pre-cancerous" tends to make people think they have the actual beginnings of cancer.

I’m going home - I’m on a 2 week pathway for diagnosis which will mean a hysteroscopy within the next 14 days. Inasked and they said it will be before Christmas. I asked a lot of questions and I have open access to come straight back to gynae if the bleeding hasn’t lightened up in the next 5 days or if I start feeling poorly.

Im being sent home with a new type of progesterone and tranexemic acid, but with a view that there is no other treatment option to stop the bleeding until they have diagnosed the cause so it’s a bit of a ‘suck it up princess’ situation until I can have the hysteroscopy. I can’t get a hysteroscopy any faster than 2 weeks. They explained that really well actually.

Thank you, I understand what pre-cancerous means and I’ve read up there’s an 8%-30% chance it could become cancer if left untreated depending on the type of cells they find. I’m seeing that positively - thank goodness I’ve finally got a diagnosis.

Are you able.to rest up for a few days ?

I always view it as once you have a diagnosis then they can put a plan in place.
I'm fingers crossed the drugs do the job now that they know what you are dealing with.

Let's not stress about cancer. But I'm glad they are taking it very seriously.

I have a sick note covering 2 weeks so I’m now off until Jan 2nd :)

I asked to speak to the doctor again if she was still on the ward and she came back which was great because I forgot to ask specifics. No signs of fibroids in the muscle but couldn’t rule them out in the endometrium.

Also, my endometrium is 20mm thick so that’s concerning and explains the 2 week pathway.

I'm glad your signed off and able to rest up and take time to recover because that's clearly needed.