Warning TMI, I don’t want to go to A&E

[Lovemusic33]

Been having ongoing problems for 2 years, have posted here several times so some may remember. Heavy bleeding, spotting, bleeding during sex and random bleeding as well as a lot of pain. Ended up in A&E a few months ago due to heavy continues bleeding, gp finally referred me for a scan and gynaecology. Had my scan which didn’t show much other than a tiny fibroid which apparently wasn’t big enough to be causing the issues. Am unable to get a gynaecologist appointment, every time I call they tell me there are no appointments and obviously with covid it’s been made ten times worse.

My period isn’t due for another 12 days. Went to the loo earlier, strained a tiny bit and since then I have been bleeding non stop and passing large clots (one the size of the palm of my hand), as soon as I stand it just gushes out/drops out. I’m just so fed up with it. A friend has told me to go to A&E but there’s no point, they won’t do anything. I have taken some pain killers and hopefully the bleeding with slow down a bit. I’m so desperate to hysterectomy but no one will even discuss it with me, I’m bleeding almost all the time and I just want it gone .

Anyone else been through this and eventually got it sorted? I’m not sure how much more I can take.

@SquarePeggyLeggy please make sure you're seen by an excision specialist and not a general gyane for your surgery.

I hate to tell you but a hysterectomy won't cure endometriosis, it's like removing your kidney because you have tooth ache!

The uterus may have some endometriosis on it, but the endo will be potentially in and around your entire pelvic walls, pouch of Douglas and could be on your bladder and bowels etc.. so removal of the uterus won't stop the spread or pain if endometriosis it's not a cure.

You'll need an excision surgeon to give you the best care and chance of it not coming back, the NHS a use ablation (laser) and just create scar tissue and are a bit haphazard.

I have had blood tests several times (full blood tests and hormone), my iron level is usually borderline even after bleeding for weeks last time.

I have a dull ache in my stomach and lower back/pelvis but not as bad as it has been previously. I have a head ache which I have had most of the day.

I don’t feel dizzy, it has slowed a little bit still passing smaller clots. I really don’t want to go to hospital, I am in a tier 3 and I would have to go to a tier 4 hospital (one that is struggling to cope), I know they will only send me home after doing bloods and will tell me to call my gp in the morning. I will try and go to bed soon (on a towel) and hopefully things will be better by the morning, if not I will call my GP.

You really need to call 111.

I havent been through it for the reasons you have but after I had cervical treatment I was harmorreging and passing blood clots and was rushed from one hospital to the other with a gynae word in an ambulance. I was given urgent surgery. I'd go to a and e if passing blood clots. I put it off for three days as I'd went to adoc and was told the first day it started it was a period. Despite having a coil and not having bled for years. I ended up collapsing at home after 3 days and my dad rushed me in. I know its daunting going back when you have been palmed off before but something isnt right and someones needs to listen and help. You know yourself passing blood clots the size of your hand isnt normal and needs urgently looked at as you are bleeding heavily somewhere.

I’m unsure if I can take tranexamic acid whilst taking the pill, I have it here from before I was taking the pill, when I look online it says ‘May increase the risk of blood clots of taken with the pill’.

You have my sympathy op.
I too had fibroids that, seemingly, were too small to be causing all my problems but the huge clots, heavy bleeding & pain was so horrendous I frequently phoned in sick because I couldn’t leave the house (despite tranexamic acid and mefanemic acid).

I was referred to gynae but was under them for 5 years whilst they insisted I try every treatment first (Mirena coil.....continuous bleeding for 9 months......Mini pill.......continuous bleeding for 5 months, you get the picture) having my hysterectomy was the happiest day of my life, turns out I also had endometriosis.

I hope you get some answers/treatment soon

Sorry you are going through this. I am experiencing similar. Just finished a massive period two weeks after last one ended (which was horrific). I have had investigations over the past month and fibroid has doubled in size. My bleeding is horrendous and feel like I’ll pass out any moment. Bloods show I am severely anemic and will have iron infusion this week. Once I have my strength back, I will have fibroids removed. Get your bloods checked and asked for an ultrasound. It is very debilitating and I hope you find the cause soon

Yes you can definitely take tranaxamic acid with the pill.

Call 111 and ask them to advise.

Tranny acid is to reduce bleeding. They give it IV if you've been seriously injured with internal bleeding risk. I used to use it for my heavy periods.

If there is really as much bleeding as you describe, then I agree that you need to see a doctor, sooner rather than later. And I know it isn't easy right now but I would be pushing and pushing for a gynaecological appointment. It certainly sounds like endo - but this bad, I suspect there may be adenomyosis as well. However, the drawback here is that unless there has been a development I'm unaware of, it can't be diagnosed until after a hysterectomy. It is seldom pleasant though, and if you have the two combined, it definitely accounts for extraordinarily heavy bleeding and clotting.

God if men bled this much from their willies I bet they wouldn’t be fobbed off.

It makes me really cross.

for OP and everyone else who hasn’t been taken seriously. It’s outrageous.

@Lovemusic33
Bless you..
A male relative, 40s has been passing clots from rear end as bid as hen’s eggs.
An ambulance was called, and mum went to his home to get clothes and said it looked like a crime scene.
Relative is needing further treatment, including an operation, but been cancelled due to bloody Covid.
Passing clots is frightening..
I passed one once and it felt like laying a soft egg.
I was on a walk at the time, and miles from home😳
Hope it is nothing serious, and that you get seen.

Nhs helpline advised relative to call ambulance, so be guided by what helpline says.
Good luck.

I was told to take ibuprofen when I have my period as it reduces loss. My ferritin levels were 6 in October so I’ve been on iron since. I felt so unwell and all I wanted to do was sleep. I would call your gp in the morning to arrange coil or discuss options with no gynae appointment available. A&E will just refer you - which has already happened so not much they can do unless you need emergency op (scan suggests that’s not the case).

I have taken the tranexamic acid. Managed to get from tue bathroom to my bedroom before needing to go back to the loo again. Will see of the tranexamic works, if not then I will call 111. Im just worried as I have no one to look after the kids or to drive me to hospital.

OP as a fellow heavy bleeder with endo I really feel for you. However. If this is not something that you have been used to every month it really could be a sign that something is up. There was a thread on here a couple of years ago with the same thing and turns out she had sepsis and very nearly didn't make it.
Please go and get seen.

I had this for SIX Months. Eventually contractions and a clot the size of a honeydew melon persuaded me to go to A&E after being told by the gp to take tranexamic and mefenamic acid time after time. I refused to move from A&E for 7 hours (various Dr's just came and went, trying to send me home with more of the same meds), told them I wasn't going anywhere unless it was to gynaecology. Eventually was sent for a TV ultrasound. Turns out my uterus was trying to expel a grapefruit sized fibroid. WS taken in and operated on immediately. Good luck!

A&E won't deal with this. I have similar experience. I saw a good gynaecologist who did an exam, and ultrasound. He quickly identified fibroids and multiple polyps in the lining of a bicornuate uterus, as well as enlarged polycystic ovaries and cervical bleeding upon contact. I had the abnormal cells removed from the cervix, and I had an endometrial resection for hideous bleeding and clots. I refused a hysterectomy due to having Ehlers Danlos hypermobility syndrome. If you are a younger woman, I strongly recommend looking into alternative solutions to a hysterectomy that will protect your mood, energy, weight, libido etc...all the stuff that goes wonky when they cut out the whole kitchen sink! Endometrial resection was life changing for me...went from staying home sat on pampers for 10 days to barely any flow at all. I also have children with SN so know how energy levels matter! A&E is a very stressful place at the moment. My boyfriend is currently sat in an isolation ward with suspected pneumonia. I advise to call a female GP and ask for an urgent referral, or see a consultant privately if you can afford it. I have an outpatient appointment this week following a bad accident leaving me with a badly healed fracture and artery damage. Normally I would have been seen and prepared for surgery months ago...but it has taken my GP waging war on the local hospital to get this appointment. It had to go up to the local care legal panel to get me care. Not easy, but if you have one private appointment (like I did) then it is a gateway to get into the local NHS outpatients as they can refer you in.

@Lovemusic33
It is such a worry being on your own with young children in a case of a medical emergency.
Have you no friends or neighbours who could
Step in?
Children’s dad?

I discharged myself from an emergency hosp visit as had no care for DC arranged.
It is a problem if no one nearby.

Eventually contractions and a clot the size of a honeydew melon persuaded me to go to A&E

Holy shit! The absolute bollocks that women have to put up with is ridiculous. I’m glad you finally got seen.

I had similar abs reluctantly went to A and E, I had lost so much blood I was tachycardiac and was whisked into resus and put on a drip. I was then booked in for an ablation but turned out I had a large fibroid ( grapefruit size) which was causing the bleeding. Once that was removed I was ok.
If you’re still bleeding at least ring 101

I know you’re frustrated and in a very difficult situation but you really should go for the sake of your children, they need you.
Don’t wait for it to get worse and demand they investigate properly, don’t let them fob you off!
So many doctors misdiagnosed or don’t understand endo and leave woman to suffer, you need to be your own advocate which is ridiculous but we always get treated as if we are overreacting.

Sending best wishes.
Do you have anyone local to you that you can ring or message just to prepare them and they can keep checking on you?

You have had a scan which doesn't show any major anatomical issues eg fibroid. In the medium term you will be seeing a gynaecologist but it is unlikely that surgery will be available quickly due to the current crisis. I would advise you to reconsider the Mirena. It would be like taking the progesterone only pill but the dose of hormone is much lower , however as it leaches into the uterine lining directly it can really work wonders for bleeding while being unlikely to cause much harm. Ask around, most women love them. It is highly likely that this will be the recommendation of the gynae when you see them anyway and it might tide you over even if you end up needing surgery.

I'm so sorry you're going through this. The pill you're on isn't Cerelle is it? I only ask because when I was on it I bled every day like a really heavy period (which for me is changing a nighttime towel every hour at least). This went on for 3 months but they said I should stay on it until my body got used to it (spoiler - my body didn't and I stopped taking the f*ing thing). I was passing big clots on it. I've had a miscarriage before and it was like the beginnings of that. But you know - stay on it woman while it "settles"....

I'd always had bleeding between periods normally anyway, irrespective of what pill I was on or when I wasn't on any pill. This was investigated but they couldn't find a cause. They did diagnose me with polycystic ovaries, but said it wasn't that causing the bleeding. God knows. I'm still alive for now at 47.Obviously you need seen and investigated urgently, but just to let you know that in my experience you can have a horrible bloody history off in-between period bleeding, after sex bleeding, etc... and it doesn't mean there's the worse case scenario that might be in your head going on. Hope my ramble makes sense. I'm v. tired.

Make sure you repeat like a stuck record to whoever you speak to that you are sole carer for children and that you are worried what will happen if something happens to you. As a single mum, whenever there was a medical emergency of any sort, I found that it was only this information that got me seen with any sort of urgency.

There's some really good advice and info on this thread. Mumsnet is brilliant sometimes. I hope you are ok and get the investigation you need.