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.

I don't think I understood what it meant until this year. I had no idea that I could be in a situation where I would sit on a toilet and be unable to get off it again as clots fall into the toilet constantly, punctuated with gushes of blood and horrific cramps. It isn't a period at all. It's a medical event all on its own.

I'm desperate for the norethisterone to be a temporary reprieve. The fear now is if I stop taking it, will I end up in the same situation as yesterday? I pray that I'm like you, it works and I only stop taking it when they have a fix for the root problem.

I really hope you get a long term solution too. No one should have to live like that.

I’ll warn you though even now (over 4 years after my last period and 3 years post surgery) I still get awful memories of it.

I think for me what compounded the situation is it got worse as covid hit and I literally couldn’t do anywhere as public toilets were shut and I needed one every 20 minutes.

I HAVE A GYNAE APPOINTMENT!!

Just came through on my NHS App. I'm being seen in 6 weeks. It's regrettable that it took things getting so bad for it to happen but IT'S HAPPENING.

Oh I’m so glad you have an apt. It’s awful that it feels like “only” 6 weeks after all you’ve been through but it’s better than 6 months I suppose?!

Great news @ShowOfHands

Sounds like the A&E gynae/your GP have helped get you pushed up the queue.

How's your body been since you last reported in? How was the return to school?

I'm pretty exhausted post return to school. Work have been great, providing me with a walkie talkie to call for help if I'm teaching and need to leave immediately and a shelf and supplies in the nearest disabled toilet and a key to access (we currently have no students with disabilities so I'm not preventing access).

I am still bleeding but it's slowing down each day that I'm taking norethisterone. I've got a lot of discomfort and pressure which turns into horrible cramping whenever I pass a clot. I could sleep for a week as well but it's a world away from what was happening last weekend.

I am now worrying about what will happen at the appointment. I've joined a couple of forums and most people had a hysteroscopy and biopsy at their first appointment and they were presented with treatment options based on the current picture. I now have to confront the fact that I have absolutely no idea what I want to happen next. Much as it's ruined this year to date, I'm not sure I'm ready to lose my uterus. But I also don't want a procedure which could only half work and the fibroids grow back. I've been so focused on surviving and chasing a referral that I hadn't considered next steps.

I’m just here to say sorry you’re having to deal with this, you must be absolutely exhausted.

I had a hysteroscopy at mine and I knew already I had adenomyosis.

I was offered to try ablation and I asked what happens if that doesn’t work (very slim success rate with adenomyosis) and the gynae said I’d have to wait a year to see if it worked and then GP would refer it it didn’t.

So I asked for hysterectomy at that appointment.

So my advice to you is decide what you want, research all options for treatments and success rates of those options (if you don’t have a dx yet look at all possibilities) and discuss openly what will happen in x y and z situation and opt for what you want.

Added empathy as I also work in a school and it’s so hard to do whilst needing to toilet every 20 minutes.

I'm not sure on the exact location or number of fibroids, just that they're intramural and distorting my uterus and have made it "bulky". The largest was tennis ball sized at my scan 2 months ago but likely growing. I don't know what options are available for this presentation and all I can find seems to be basic advice for all fibroids with the caveat that it depends on the individual.

If fibroids have grown into the uterus wall then ablation removes the lining of the womb and leaves the fibroids and they can still bleed.

Personally if anything is outside or in the wall I’d go for hysterectomy - best thing I ever did!!!!

I had my appointment last week and as expected, had a hysteroscopy and biopsies. The gynae said I have to have biopsies to ensure nothing else going on as I'm over 40. She said she couldn't discuss treatment options until she has the results, at which point I got quite upset and she said her first line treatment was... a Mirena! I pointed out I'd tried that and the bastard thing fell out so she started listing pills I could try. I've tried all of them. When I said I really can't manage the bleeding and pain any longer, she decided I need an MRI. The waiting list? Months and months apparently. She didn't even have my ultrasound results from July and asked if I could find a copy and email them to her secretary.

Meanwhile, I'm now on maximum doses of norethisterone and tranexamic acid and I'm still bleeding, in huge amounts of pain every day and there's no end in sight.

I genuinely think I might just walk in front of the number 31 bus.

@ShowOfHandsI've just checked the threads I'm on and by chance, saw your latest reply from this morning. You poor, poor thing. Apologies because I haven't read back through the thread to refresh my memory, but have you asked for a hysterectomy? This is no way to live 😕

My GP has written that I need a hysterectomy in my notes and I asked about it at the appointment this week but the gynae said she doesn't talk about treatment options until she has biopsy results. And the results will take "at least a month". I'm not sure how long I'll then wait for an appointment.

I did ask her directly if a hysterectomy was likely given nothing else had worked and she had already said that multiple intramural fibroids were not likely candidates for removal and she said "yes it's possible."

She didn't seem to want to speak openly about any of it tbh.

@ShowOfHandsthat's so unhelpful, I'm sorry. Without wishing to sound patronising, did you tell her the mental impact this is having on you? I can't believe we live in a society where a woman can be left to deal with physical health issues to the extent it makes her feel suicidal, and we are just expected to get on with it while having every facet of our live severely affected.

I tried. She just nodded.

I was saying to DH only today that you would be up for cruelty charges if you left an animal in such pain and actively bleeding for 6 months. And if I were bleeding from any other orifice, losing clots all day every day and anaemic as a result, they'd do something faster.

In what world is this okay?

Are you planning on having (more or any) children? If not consider endometriol ablation

I had it 18 months ago and no more two week 6 day haemorrhage

I won't be having any more children but probably can't have an ablation as the fibroids are distorting my uterus.

As reluctant as she was to talk at my appointment, the gynaecologist did admit that drugs/coil were the first line and after that the options are limited due to the distortion and the fact it's multiple fibroids.

I can't get out of bed. I'm on a much-needed family holiday and the pain and bleeding are preventing me from doing anything.

We've looked into the cost of going private for a hysterectomy and we simply can't afford the loan repayments.

I feel trapped. This is ruining my life.

Happy half term

I am so sorry you're still suffering. If you're abroad and have good travel insurance can you get in touch with a doctor and see if there's anything they can do?

Honestly call 111 or go into urgent care or A&E, they can do some things. Whether it's a higher more prolonged dose over IV etc and also contact gyne to expedite care. Please consider it, as it really seems that you need to see them.

I'm not abroad and all A&E will do is pump me full of IV TXA and pack me off home. They're not equipped to deal with it. I've taken a maximum dose of TXA today and it's slowed things down. But it's only a temporary reprieve.

I tried to contact the gynae on Friday and her secretary says she's on holiday for a fortnight and won't do anything until the biopsy results are back anyway and then she has ordered an MRI which will also take "several months." The MRI is only to see if the fibroids have grown and I can't work out why that even matters or why she can't just use the US machine in her room to look at them if she wants to know. I don't know why she can't just agree that this needs actual treatment. It's certainly not getting better on its own.

I'm so sorry to whinge again.

Oh darling girl.

What you're going through sounds absolutely shit. I can't imagine.

Don't you dare apologise for "whining". You're really not. You're having a shitty time and need to download.

I wish I could make it better for you 😞

You can contact PALS or the ICB of the trust to say about your worsened condition, the fact the MRI wasn't put on the urgent list when you meet the criteria, and also the dismissing the hystertomy as they may be able to move the MRI to urgent and see if another surgeon could do it quicker without taking you off her list. It often works in my experience.

The reason I did say A&E is so you can get IV TXA, but if the bleeding has slowed that's good for not. You might need to take more a day consistently for now. But if you go to an A&E or urgent care with a gyne SDEC then they can often expedite things e.g do the MRI for you and then cancel the other one, also contact the ward/scheduling for you to be on any available surgeon's list, so if there was the chance to have it earlier you can do that, on the basis of your worsened condition they have seen and recorded in notes to back it up. Hopefully you have an easier night and day tomorrow.

Can you get an iron infusion? If you stop being anemic it will help to bleeding.
Im so sorry. It sounds horrible

You aren’t whinging. You are a desperate person who has no quality of life because you cannot work effectively or enjoy your family.

I urge you to contact PALS. Ask your Head of Year to refer you to OH and to write a supporting letter. They absolutely will do that. Send both to PALS.

Does your school belong to a Trust that has access to medical care? If they do, the fact you are restricted in your job will access support usually.

Having spent the day battling the indifference of the NHS I’m so angry on your behalf. Do we have to resort to collapsing in A&E to be heard?