Non-stop bleeding & chronic pain

[CinnamonSwirl82]

Hi all, I've been diagnosed with endometriosis, extra pelvic endometriosis and adenomyosis. I'm awaiting an MRI to find out the severity of the adenomyosis and to see how deep the endo has gone into my bowels before they do surgery to try and remove stuff.

Problem is I'm bleeding every day and have been since October 2022. Non stop. Not one day off. Nada. I've been on every birth control, norethisterone, tranexamic acid, Mefenamic acid, provera and the prostap injection. Nothing stops it and the consultant thinks I'm 'hormone resistant'.

I'm 30, childless, and the doctor is going to the medical board to request a hysterectomy. He won't do this until he's had the MRI results back, and also an ultrasound to check the endo hasn't spread to my kidneys, or that my bladder endo hasn't started damaging them.

I've already drained my savings going private and can't afford anymore. I've no idea how much longer I'm going to be waiting on the NHS - it took 1yr 4 months just to get an initial appointment with the consultant.

Can someone please give me a miracle cure to stop me bleeding because the doctors have just told me 'we cant' and have left me hanging. Its ruining my life. I'm in a constant endo flare up and I'm in absolute agony with it. What do I do in the meantime?! I'm terrified of a further year or two in this state whilst I sit on every waiting list there is. Meanwhile, my physical and mental health is rapidly deteriorating and I'm now housebound. I'm so lost.

Hey Hun, endometriosis is so painful isn't it, I just want you to know you're not alone and offer support from a fellow sufferer

It's the constant bleeding that's getting me the most right now. I've no idea what to do to stop it. I need it to end 😭

I'm sorry it's happening to you, feel free to message if you need someone also in pain from it

Thank you ❤️ I hate to say it, but I'm so jealous of women who only get pain around their period. I wish I could have that back. I just feel so angry at the world these days

I agree, I'm jealous of women who can get on with life with their period, I'm in so much pain I struggle to get out of bed

Even those with endo. I'd love to just have the pain once a month. Hell, even two weeks of the month.

I'm too heavy to wear a tampon or towel, so I now have to use a cup but it's becoming so painful to wear and I live with it 24/7.

The painkillers on the counter are beginning to look too enticing 😭 I fucking hate my life.

I had to appeal to get a hysterectomy, the criteria are that you have had to have tried at least 2 hormonal methods to stop the bleeding & have either completed your family or not want children. I had a laparoscopic supracervical hysterectomy, I was only in hospital 16 hours & it was life changing for me, no periods, no drugs, the pain stopped overnight.

This sounds horrendous, OP. I'm very sorry you're having to live in such misery

If the hormones didn't stay the bleeding, I'm afraid nothing will. Even surgery can't get rid of widely dispersed endo, but I do hope they'll soon decide to whip out the worst of it. What do you mean by too heavy to wear a tampon or towel? I found maternity pads useful when having monster bleeds (PCOS) and I put incontinence pads in my bed for the leaks.

The best OTC painkiller I've found is Feminax. Second best is Nuromol. I'm sure you've been through the entire shelf already, though.

I feel utterly defeated today. I was told they'd discuss my case in a board meeting to approve a hysterectomy, but told me it was more or less guaranteed and the clinical director had agreed to it.

Had a letter come through today, and I think they've rejected it and told the doctor to force me to have the coil on the grounds I don't have children. They've also put it down to my weight, and have me down with a BMI of 47. I have a BMI of 34. I know it's higher than it should be, but I'm not 40kg heavier than I currently am. I've lost 6 stone since last October.

I'm trying to ring through to the secretary to find out what this letter actually means before I get truly angry and upset, but she just won't answer the phone and I'm close to a panic attack.

I don't know what I'm going to do if they have rejected it. They were supposed to try and remove endo at the same time but it looks as though I'm not even going to get that now!