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.

Thank you for sharing such a personal story. I am truly sorry that you went through this. I am pleased for you that life is easier and brighter after your surgery but it's quite a thing when such a major procedure with consequences galore is a positive step. It must feel so bittersweet for you.

I do think not realising how awful you feel at the time must be common. I see it countless time on other forums. It gets to the point where you accept it as your new normal and learn to cope with it. I can't imagine a world where I just get out of bed and walk downstairs. Getting out of bed is painful, I risk leaking, I feel dizzy and faint, I take a zillion drugs, I have to check/change my clothing. Every small thing feels like an uphill struggle.

I wish you all the very best @todayImstruggling

30mg of norethisterone is not particularly high. It’s probably as high as your GP can prescribe though. I was on 100 - 200mg per day! Prescribed by gynaecology/oncology!

That's really interesting. Gynae said 30mg is more than they like to prescribe and they'd ideally like me to reduce to 15mg. Might be worth chasing.

I've had my BP rechecked today and it's now 'high' rather than 'dangerously high' so they're happy to monitor it again in 2 weeks in the hope it's going down as an onward trend.

Iron infusion is arranged for Thursday and I've got the number for the person who runs the gynae waitlist. The nurse I saw today recommended I phone up at least twice weekly and give them a no holds barred update on how bad things are, asking every time how long they will leave me like this. Not sure it's going to help, but I'm willing to try.

Sadly my advice on getting things moving in the NHS is to repeatedly contact the surgeon via his staff, updating how desperate you are. You'll then be priority for cancellations. It's wrong but i have had success when I've been truly desperate for an elderly family member who was in great pain and unable to speak up for herself.

I'm so so sorry this is happening to you OP. Healthcare in the UK is a disgrace, particularly for women.

My DD was on the receiving end of appalling 'care' at Whipps Cross in London, she will hear the outcome of the Ombudsman's inquiry any day now. The one thing that improved her treatment was getting her MP involved. The brilliant MP was on the phone to the trust's CX within hours of us contacting her. I don't know what the MP did, but DD was moved to another hospital the same day.

PALS were utterly useless for her, but might it be worth contacting your MP and making a fuss? As an ex NHS employee, it enrages me that we have to fight hardest when we're at our must vulnerable, but frankly, you've nothing to lose. Sending all my best wishes

That sounds so awful op. I have nothing useful to offer. I'm sorry.

Have you ever had any time signed off work? So you can use some of your limited energy on your family and not work?

I took some sick leave for different medical reasons but I just felt the tiny amount of useful energy I had was being used on work and my poor kids were getting the dregs that were left over.

Being signed off didn't help my health at all but I felt less guilty about my family.

I need to work. It gives me focus and even on bad days, knowing I have to present my best face to the students gives me a way of concentrating on something other than the pain. Plus, GCSEs are upon us and there's no way I'm letting the students or the department down at this point of the year. I will need time off post surgery and also worry about that so don't want to take time now. I am so sad that my family don't get the best of me. Or any of me. But my youngest is 14 and understands what's happening so it could be worse.

I can't get through to the waiting list coordinator and I've left messages. I'm not actually fit for surgery either so shouting loud might be pointless.

Iron infusion is tomorrow and if my BP goes down as well, I will be on at them constantly to get a date or a cancellation or something. I can't really go on like this.

How have we ended up in such a desperate situation?

I've had the infusion but I'm stuck in the hospital after having an allergic reaction to it. I'm covered in a rash/hives.

What TF is next?

Oh that's shit. Are you bleeding really heavily just now? Would it make any difference if an actual medical person saw how often you're bleeding over a period of time and not just a short appointment?

Jeezo OP, how long must this go on?! Do you have the contact info of the gyno. Surely they can also contact on your behalf?

I tell every single health professional I see that I am bleeding all day every day. They're very well aware but they can't do anything. With norethisterone, it usually settles to a medium/light period but never really lets up. Without the norethisterone, I lose multiple clots. It's like a tap.

The nurse who did my iv today is in exactly the same position. Huge fibroids, daily bleeding and awaiting a hysterectomy. She was very open and lovely. She has exactly the same problems as me, worries and guilt about her family and desperately hanging on to her job. She admitted that even as a nurse, there are no shortcuts.

Gynae is a surprisingly lovely man but has a whole waiting list of women who have the same problems. He does phone and check in monthly but I think his hands are tied.

I finally managed to get through to the waiting list coordinator who said that my surgery won't be until next year. I tried to speak to my gynaecologist but couldn't get through to him so spoke to everybody I could think of so GP, the nurse who does my injections, the pre-op team and was extremely frank. They all agreed to speak to the gynaecologist.

I then had an answerphone message from the consultant saying to keep up the paracetamol and use A&E if the pain or bleeding became unmanageable.

I sent a long, calm, but detailed email to the gynae secretary explaining in minute detail what this is doing to my life, physical and mental health, relationships, hobbies, job and so on.

I had a reply 10 minutes later and I've been moved to the priority 2 list which technically means surgery within a month. I presume they're not hitting that target but it's progress I hope.

In other good news, my blood pressure was normal last week for the first time in months. I might even be fit for the surgery at this rate!

I'm really sorry you're still suffering and hope you can have the surgery asap. Keep pushing them and telling them how bad things are.

I had this and it was fibroids. I had them removed and a Mirena fitted just under 2 years ago at age 42. Tbh Mirena is not the magic solution for me. I don’t bleed heavily anymore but I’m constantly bleeding lightly or have heavy discharge. I only have about 7 days a month where I’m not bleeding and my cycles are so irregular I end up wearing protection every day anyway. I also think it’s made me depressed. I’m just about to turn 44 and very aware there could be another damn decade of this ahead. Ugh.

I am no longer surprised by people contributing their stories of being left to bleed continuously. I am angry however.

Ask to see the gynaecologist again. This isn't living, it's surviving. And there are other options available to you.

Hi. Sorry to hear so many others suffering. I’d like to join the club!
very similar to lots of you here. Fibroids, constant heavy bleeding since September last year. Iron levels are ok but ferritin level is 5. Feeling like shit.
I saw a gynaecologist in December who prescribed me 3 months of medroxyprogesterone acetate to take if the fibroid removal didn’t work (it didn’t). I’ve been on it about 2 1/2 weeks and I’ve stopped bleeding. Still need to wear a thick liner because I’ve had the odd moment of bleeding, but compared to what it was (palm size clots, overflowing moon cup and nighttime pad flooding every 45 minutes for about 20 hours a day 😭), I feel such relief. No idea what happens once my 3 months is up…

thought it worth mentioning in case it’s something that might work for you.

Solidarity. I hope things improve for everyone. X

I tried medroxyprogesterone but it did nothing.

The "what next?" question seems baked into gynaecological care. They give you a short term fix but no long term planning. I think they just hope you'll dry up into a menopausal husk and stop darkening their door.

Jesus what a ride you have been on. The NHS is absolutely appalling.

I would be writing to your MP if you dont get your surgery within the month

Or complain to PALS

I had a period in my early 40s that lasted 6 weeks. I was given progesterone to make it stop. After that I was offered the coil but asked to try the mini pill. It’s been fantastic for me and stopped my periods altogether.

I'm glad to hear you've been moved to the priority list. I hope you see some action soon.

That's good news at last. I can't believe how much you have been left to suffer.

Keep chasing them.