Never ending bleeding & pain

[coloberry]

Hoping someone has advice or can relate.
I’ve been bleeding since Aug 2024. I’ve had roughly one month of no bleeding but other than that, it’s been constant.
my ferritin levels are pretty low, 3 to be exact.
Smear fine, ultrasound showed one ovary appears to have PCOS and the other ovary has roughly a 6cm cyst. I have a repeat scan to monitor cyst but dr is unsure on bleeding - they aren’t sure if to go down monitor route or treat but if the latter they aren’t sure what to suggest.
I’m on the pill as my periods are v heavy and painful.
I’m fed up of bleeding, it seems to be never ending and I’m experiencing a lot of pain - I’ve resorted to taking codeine but it’s not even taking the edge off the pain.
Has anyone experienced this or can share some advice or light at the end of the tunnel please

Do you have transexamic acid? Have you trialled the mirena coil?

My ferritin was low though not as bad as yours. I was practically fainting at work.

I got TXA to stop the bleeding and then a mirena. And six months of diligent iron tablets every 48hrs and my ferritin is now 118 and I no longer have to pull over if I'm driving to change my period pants!

If you don't have any TXA ask for it from. GP.

ferrous sulphate is available OTC from the pharmacy. Take it every 48hrs on an empty stomach with a high strength vitamin C tablet. No other food or drink for two hrs.

Get booked in for a coil. Mine has changed my life.

Thanks @Ilovelowry
I did have TXA which is what stopped the bleeding for a month. They seem reluctant to give me more and reluctant to refer me to gynae so I’m just stuck in the endless loop of bleeding/pain and no help.
I must admit although ferritin is low, and I do feel exhausted all the time and quite dizzy - I don’t feel horrendous from it. Sorry to hear you had such a tough time with it. I’ve got iron tablets although need to keep on top of it as I’m not helping myself when I forget to take it.
I discussed coil option with my GP but they were unsure if it would worsen my symptoms so we stuck with the mini pill. Is this not the case?

This is appalling, OP. You still haven't been referred to gynaecology? (Not that that will be quick anyway atm.)

I'm assuming you've tried more than one GP?

I think you need to be blunt now as your care has been inadequate for too long. Ask why they are reluctant to give you TXA longer term. If there is no reasonable explanation, ask for it to be noted in your file that you have asked and been refused.

Then I'd write to the practice manager, asking why you have been denied a gynae referral and requesting a treatment plan meanwhile.

Ferrous sulphate is the hardest on your digestion (and the cheapest). Iron fumerate is a bit better and is also prescribed on the NHS. At a ferritin of 3 you would be given an iron infusion for certain in, for example, Australia.

@TryForSpring thanks for the reply.
No referral, they mentioned a possible referral after the 2nd ultrasound which is in 12 weeks time depending on the cyst in my left ovary but no referral about the constant bleeding. They said it could be due to my mini pill although I’ve been on this for roughly 4 years and no issues since this has happened.
This is the 3rd GP I’m on. This one has helped figure out what’s going on but in regards to managing the symptoms they’ve been no help.

You’re right. I’m at fault for brushing things off and because my symptoms feel like more of an inconvenience than me actually being poorly, I tend to not want to hassle or push for more help.

I’ll have to check what I’ve got for my iron. I purchased it myself but just picked whatever. I did think 3 was really low but they didn’t seem that concerned just said to take iron once a day for 30 days and that’s that so felt like I was being paranoid. I even questioned what happens after 30 days seen as I’m constantly bleeding and I assume that’s impacting my iron but they didn’t seem overly concerned on that either.

I write it out and it seems ridiculous and slightly unbelievable. Even my US scan, the second GP marked my results as normal - it was only until I probed as the lady doing the US mentioned PCOS and cysts that they suddenly found that they weren’t normal hence me swapping to the 3rd GP.

I was in your position 14 years ago. I tried TX acid and the Mirena but neither did anything. My ferratin was low but not as low as yours.

My GP (who supposedly was the women's health expert at the practice) kept fobbing me off. I was bleeding so heavily all the time that it was almost unmanageable.

Eventually I saw a different GP who was brilliant and immediately referred me to a gynae consultant. I had two hysteroscopies and then had a fibroid removed. No further problems.

Please insist on a gynae referral. I spent 2 years being fobbed off and wish I'd done something earlier.

@AnnaQuayInTheUk thank you, sorry to hear you had such a crap time with it.
Did you have an ultrasound and did that flag a fibroid? My ultrasound said no fibroids/polyps - just PCOS ovary on one side and 6cm cyst on the other side.
GP were meant to call me 2 weeks ago and haven’t bothered so I’ll give them a call and push for a referral as I must admit I am struggling to manage the pain

This is horrendous Op, your iron is absolutely through the floor and you are in constant pain and have been bleeding for months, yet not seen a gynae ? (Can you afford to go private ? ) I think you need to go back and insist on a faster appointment, iron levels that low are dangerous, you could pass out at any point for a start. Are you driving ? Set a timer on your phone and take the iron religiously, or ask for an infusion. The reason you keep forgetting to take it is because you are so anaemic, it becomes a catch 22.

How old are you?.

I’d put in a formal complaint to your GP practice and then move to another GP practice. I’ve had similar problems and it’s appalling you’ve not been referred to gynaecology. What you’re describing too is well outside a GP s remit. It is all too easy to get fibbed off as you have been and you will need to be persistent in order to get answers.

The bleeding, now long term is causing you to become anaemic.

If finances permit I would phone your local private based hospital and see if you can self refer to a gynaecologist. I would also keep a pain and symptoms diary particularly if you do not already do this.

Painful periods are often caused by endometriosis, has anyone ever mentioned this to you?. It’s not detected on ultrasound scans readily. My constant bleeding too was caused by persistent rises and falls of both estrogen and progesterone.

@Christwosheds- that’s correct, no referral yet.
Pain started approx 2 weeks ago and has been relatively constant since. It’s mainly just aching and my lower half feeling incredibly heavy which I can cope with, however I am struggling when it steps up a notch - that feels like stabbing in my lower half and radiates around to my lower back. The codeine isn’t touching the pain but it does make me sleepy so it does allow to sleep through it.
I can’t afford to go private but I can’t recall if I have private insurance, I’ll need to dig through my emails.
I am driving - I drive my little boy to and from school. I didn’t realise my levels were that low, the GP honestly didn’t seem that concerned by them.
I am incredibly forgetful, I didn’t even put two and two together with it being linked with anaemia. Re timer, good shout - I’ll do that going forwards.

@AttilaTheMeerkat
I’m 28.
I definitely need to be more firm with them, I’m conscious of wasting their time hence why Im probably always batted off. I don’t really want to move GP’s, alarmingly our GP is the best of a bad bunch.
I don’t keep a log but I will certainly do this moving forwards. Nobody has mentioned endometriosis but it is in my family, does that matter? How do you manage the bleeding with your hormones fluctuating?

I would check your emails re private insurance, you may be on such a scheme via your employer.

Does your mother know about your period problems, could someone like she or a friend of yours also advocate for you?. You are never wasting their time discussing health problems like you are describing and they are there to supposedly help the patient. Alternatively you could find a private GP to discuss your symptoms with. If your current Go practice are this bad I would certainly consider seeing another gp practice in the next town or city nearest you.

I eventually managed the bleeding via keyhole surgery.

Endometriosis can go down the female line in families.

Gonna

Sorry re post holding newborn and typing. I am had similar pre pregnancy (also have pcos). I ended up in a&e needing a blood transfusion.
Had a biopsy in gynae within days which confirmed adenomyosis and endometrial
Hyperplasia with pre cancerous cells. You absolutely need to complain and push for investigations. The state of gynae care in this country's bloody scandalous.

@AttilaTheMeerkatI’ll definitely check my emails and employer schemes.
My mum is aware and will most definitely advocate for me. My partner is also alarmed so I’d say he’d be the first on the phone to the doctors if they fob me off again. I’ll give them one last chance, if they’re no use then like you said I need to move.
thank you for sharing, hope all is well since the keyhole surgery. That could be it then, my auntie has endometriosis - I know she needed surgery in the end

So sorry to hear that @mummytrex. Sending lots of hugs and wishing a speedy recovery.
I have certainly had a wake up call reading all the comments and will give the GP a massive push tomorrow for help.
Sorry to ask but what caused you to end up in A&E? Was it the constant bleeding and did you feel out of sorts before ending up in A&E?

@coloberry thanks and no problem at all. I was lucky it was caught.

Like you I was constantly bleeding for months on end with one or 2 days respite before starting again. Bleeds were really heavy with large clots and flooding at points.

I've always had heavy bleeding and large clots and so initially wasn't worried.

The GPs I saw (there are lots at my practice) were all "lots of women have heavy bleeds, just take iron"...

I reached the point I was getting breathless just walking around the house, palpitations and could barely get through the day as I was so exhausted. It was all due to having become severely anaemic. That day the symptoms had become particularly bad and my lips were tinged blue.

Really hope you get this properly investigated and resolved asap.

Should have added. In terms of treatment. The hosp fitted a mirena coil and I go for regular biopsies.

Thanks @mummytrex. Sorry to hear you had such a crap time, can certainly relate to barely getting through the day and breathlessness. I’ve felt considerably worse today but not sure if that’s a psychological thing as I’m worried.

I have private healthcare and spoke to a lovely GP today who wanted to find out the cause of why I’m bleeding and will be referring me to gynae - hallelujah! She’s also requested my GP does repeat bloods considering my ferritin was 3 and I’ve been bleeding for four months since bloods were done. Prescription for TXA in my hand as we speak. Feeling a lot more positive and think I just needed a massive kick up the ass to get this sorted. Thanks everyone.

Great news re having private medical insurance as you do need to get to the bottom of things. As for iron supplements, a dr at the hospital quite rightly pointed out taking iron supplements was never going to fix things given the rate and volume of blood loss. Good luck!