Will I ever stop bleeding?

[ShowOfHands]

I have had a lifetime of predictable periods. 28 day cycle and manageable. Over the last 18 months or so, they've become slowly closer together and I now have a 21 day cycle and bleed for 8 days, often heavy with flooding and clots and it's more painful. I don't think I'm ovulating anymore either as I used to have clear signs.

I'm currently 16 days into bleeding and for the first 13 days it was so heavy. I'm on norethisterone from the GP to try and stop it but after 3 days, it's slowed down massively but still there when wiping.

I'm clearly anaemic and the GP has given me iron tablets and referred me for blood tests for everything she can think of (no appointments for 2 weeks for that), and ultrasound but that will take a few weeks and she's recommended a Mirena but the GP can't do them and the clinics have a 6 month waiting list and will only give them for contraception. So I have to lie given that DH has had a vasectomy and I don't think I'm fertile anyway.

Meanwhile, I swing between thinking this is normal and just the perimenopause and being terrified that it's something sinister.

I am so so so so done with bleeding. I feel grey and lifeless and exhausted and I don't understand what is happening and if it will ever stop.

I don't even know what I want from this thread.

This is horrendous! How awful for you.

How the hell haven’t you needed a blood transfusion with the blood loss?! If it were men that had to go through this shite, there would be appointments available!!

Gynae is a shit show. From being referred to actually having surgery (stage 4 deep endo) I was just over 2 years
if you can then ring and ask to be on a cancellation list for an appointment or to take a telephone one or anything. Make friends with the secretary

it’s awful. I was constantly in a&e screaming in pain and they had maxed out all the painkillers I could have, I nearly lost my job because of sickness

I can't believe what a mess the whole system is in.

I've been reading the NHS Choices page and I think it implies that if I'm not going to be seen in 18 weeks, I can ask for a private referral to a clinic which accepts NHS patients.

I'm on norethisterone ATM and it's actually reduced the bleeding significantly but the GP said they can only prescribe for 10 days and long term use is a gynaecologist's remit. Last time I took it back in May, as soon as I stopped the bleeding was horrific and I couldn't leave the house. I've got enough to last me until Thursday.

Surely I can't be expected to wait a year like this? But apparently according to all of you who've been treated abysmally and been denied access to effective healthcare, that is exactly what they expect. It's diabolical.

I'm going to phone the hospital directly and ask for guidance.

Definitely ask, I was referred to spire originally but they couldn’t treat me there due to no bowel endo specialist
that referral was quite quick

I had SIX blissful days without bleeding whilst on norethisterone. I stopped it on Thursday and continued to be bleed free. Until last night when I suddenly had severe cramps and started bleeding like a tap had been turned on. In 30 minutes, 5 clots the size of tennis balls came out and in-between, I carried on flooding. I was on the verge of going to A&E but tried some tranexamic acid first which slowed things down after a couple of hours. Now I'm just bleeding moderately heavily with smaller 50p size clots.

I'm calling the gynae department tomorrow and will ask them wtf I am supposed to do. I can't get through a year like this.

I'm a teacher and back to work tomorrow. How do I teach whilst passing huge clots and flooding through double sanpro in 20 minutes?

This is ruining my life. I'm sorry to be dramatic but I can't keep doing this.

I'm in A&E. I've bled all over their chairs, the floor and myself. I'm now in a nappy and hospital issue pyjamas. They've put me back in the waiting room where it's standing room only. I've lost dozens of huge clots in the last 2 hours. I'm so scared they'll just turn me away. If I'm ever seen.

I have nothing to add OP but I just wanted to say I'm so sorry you're going through this. It's fucking abysmal. I'm terrified something similar is going to happen to me knowing what a shit show women's healthcare is.

Thank you for being so lovely.

I'm still in a waiting room of sorts though through some doors from the main A&E. I was triaged rapidly and hooked up to a drip. I've had bloods taken, a second hideous and embarrassing nappy given to me and they've said I will see a gynaecologist before I leave, though to expect a very long wait. It's so SO busy here with people crying and literally screaming but they moved pretty quickly when they saw how heavily I was bleeding. I bled all over my car and had to change my pad in the fucking car park as blood was pooling in my shoes. The new super maxi pad didn't even last the walk to reception and I bled everywhere in A&E. I can't quite fathom how it got so bad so rapidly.

I am PRAYING that they'll come up with a plan. I'm terrified that they'll give me the meds through my drip to stop the immediate bleeding and just pack me off home for the same thing to happen again.

@ShowOfHands I totally understand. That's the usual modus operandi of A&E, which wouldn't be so bad if there was a quick follow up. You clearly need surgery to remove the fibroids and I would be refusing to leave but that's easy to say in my situation. I remember the feeling of desperation as I was left being projectile vomited on 20-30 times a day by my DD and the horror of being discharged from A&E after she'd choked and turned blue. Twice. I really really hope they do something meaningful.

I could have written your post and turns out i have endo, adeno and PCOS. I ended up going private and then having the mirena fitted privately too and honestly, the coil has been an absolute gamechanger. I know it isn't for all women but for me I've got my life back essentially.

That sounds so traumatic. I'm sorry you've been through it. It leaves such a mark.

Unfortunately, the mirena I had fell out due to heavy bleeding so no idea if it would have helped. I suspect not as the fibroids are distorting my uterus.

A&E are currently trying to find a gynaecologist. I think it's going to be a long night.

This is horrific for you OP. If you came in with blood pouring out of any other part of you, they would be really concerned, but because it's your vagina somehow it's ok cause it's "expected".

Don't leave without being seen and some answers. Tell them it's affecting t be quality for.your life. You can't function, can't work can't do anything with blood continually flooding.

Are you still there @ShowOfHands ?

I've just read your thread and couldn't ignore. DSis had a very similar story and had to fight hard for a hysterectomy.

I hope the gynaecologist is able to move your case up the queue significantly.

And I hope you've been talking to your SLT all through what's been going on. I'm certain they'll be sympathetic. Hopefully your LA will be liked mine, and have a menopause policy.

Oh I’m so sorry OP, it’s insane how if that was coming from anywhere else they’d be rushing to your side. My friend had this with fibroids and it was absolutely debilitating and destroyed her mental health. She had a hysterectomy and was like a new person. They rushed it through as the bleeding was so awful so I hope you have the same.

I've just got home. The gynaecologist performed a speculum exam and said I wasn't actively bleeding so I am okay to go home and carry on with the txa oral tablets and they'll try and expedite an appointment for me. The txa drip has helped. I'm definitely still bleeding though it's significantly lighter. I'm terrified it's all going to start up again overnight. Or that they won't expedite an appointment and just say it will take a year and that's that.

I feel emotional and drained. Apparently my iron levels are significantly better though which surprises me. I'm religiously taking high dose iron but thought the heavy bleeding would be interfering with its effectiveness.

I also feel really, really crampy and sore right now and am not sure why.

I'm supposed to be up for work in less than 5 hours.

Thank you for asking/caring. It really helps.

@ShowOfHandsI'm sorry to hear they sent you home. As others have said, if you were bleeding that much from anywhere else it would be treated much more seriously. I wonder whether it's worth continually presenting at A&E every time this happens (which will be grim in itself)? I honestly can't believe women have to go through this shit.

I'm sorry this is happening to you, just read your full thread. It's hard for A&E as they aren't meant to deal with chronic issues, or something that is an outpatient issue, I'm sure they also feel angry at the system they have to work in, which isn't working well at all. They can only deal with acute issues, but hopefully they can expedite gyne.

Do you have the right to choose where you live? They should give you the choice of more than 1 hospital, most of the time when I've done it, it's been almost 10. Obviously, some closer, some further away, but they always have a list with the number of weeks till first appointment, and then treatment. If you can get that (from a booking reference number), you can possibly choose a hospital that may be further but with a quicker time? I hope you're feeling better, you should be able to get a stronger prescription of tranexamic acid though (in your situation even though it's normally only meant for a few days), so maybe ask the GP about that whilst you wait.

I felt appalling using A&E but I was bleeding so heavily I couldn't even answer the question "how often are you changing your sanitary protection?" I couldn't change. It was like a tap. Put it on, flood immediately. I found myself standing at the pay machine in the carpark with clots the size of cricket balls slithering down my legs and into my shoes. My socks were saturated. I left a trail across A&E. It was frightening and unmanageable and ended in me hooked up to a drip on a hard chair in a packed waiting room wearing a nappy and see through hospital pyjamas/a blanket. I was scared and humiliated.

I'm in the waiting room for my GP right now and I'm going to ask if there's anything at all I can try while I wait.

I'm still bleeding but the clots are smaller and it's manageable.

I'm exhausted.

I don't know how right to choose works. If the gynae department aren't forthcoming with an appointment, I'll ask. I've read about it on the NHS website but I don't know how to access it.

It sounds awful @ShowOfHands Your early posts describing your GPs attitude says to me that you're going to have to fight hard to get them to push your case on.

Ask your surgery about right to choose today. Don't waste time seeing what happens with gynae, get the information now so you can kick things into gear immediately if gynae come back with a "you still have to wait 50 weeks"

No you were absolutely right to go to A and E and (I hope it isn’t the case but) keep presenting every time it happens. That level of blood loss is crazy. Fingers crossed you get some help at the GP

My GP is utterly lovely and a woman's health specialist. My issue has been that I've only seen her once in the last 4 months (she referred me for scans, prescribed the POP, referred for the mirena and gave me iron/txa with advice on when to come back). Sadly, I've seen only locums since then.

I've just seen my regular GP and she's given me long term norethisterone and is on the phone to the gynae department asking for an emergency appointment either face to face or on the phone, and if they don't help, she's going to talk about other routes.

I take it back @ShowOfHands Sounds like your GP is fighting for you.

Hopefully her phone call will make the difference in getting your an appointment. Keep us updated.

My GP prescribed it for me long term. I took it everyday for 18 months and didn’t have a period in all that time.

I was given it on day 82 of the last period I ever had!

I took it twice a day and had to be religious about doing it every 12 hours but although it wasn’t the overall solution (didn’t take away the pain, bloating etc) it made life far more
bearable whilst waiting for gynae apt and then hysterectomy.

Oh sorry x posted. Glad your Go has given you northisterone long term.

It is utterly soul destroying and people don’t understand what “heavy” period and clots means when you say flooding.