Endometriosis pain worse than labour-hand hold and TMI alert

[DtPeabodysLoosePants]

I have endometriosis and had a day of bad pain yesterday as have my period. Last night the cramps escalated to the point I was ready to phone an ambulance. I've never known pain like it and have had endo for about 30 years, had 3 children, 2 of which were home births with just gas and air. I felt sick and like I was going to have diarrhoea, the sweat was rolling off my face and I had no idea what to do with myself. I'm a single mum so no one around to call on. I was so scared. I tried my best to just breathe through the cramps but was on the floor with them. LO was scared bless him but the older 2 who are 12 and 10 got me a cold drink and an ice pack for my forehead. Eventually the worst of it passed along with a load of poo (sorry TMI) and I was left cold, shivery and covered in goosebumps and pale.
I take paracetamol and dihydrocodeine 4 times a day, every day, already so was a bit stuck for further pain relief. I had Buscopan in the cupboard so have had 3 doses of that since last night and the pain is manageable but I still feel ropey. We go on a weekend break today and it's really rubbish timing. It was really, really frightening and it's left me worried about getting 3 trains today with 3 children and an elderly mum to look after. I'm sure I'll be fine but Jesus Christ it scared the shit out of me (literally!).
Has anyone else had this with endometriosis? I also have ibs but it's just bloating and wind not constipation or diarrhoea.

I had (have) endometriosis and am luckily pain free now. But I do remember the times when the pain was so bad that I took twice the recommended daily dosage of painkillers because I couldn’t cope with the pain. Have you had surgery to have the endometric cysts removed? I had laparoscopy twice and that together with going off the pill had a major impact and returned my life to normality.
There is also medicine that puts you through artificial menopause whilst you’re taking it that supposedly helps a lot but you are only allowed to take it for up to six months altogether due to the side effects. I would recommend having laparoscopic surgery.

Hi Mia. I've had 7 induced menopauses in my 20s with GnRH analogues. 4 laparoscopies and have taken the combined pill back to back for several years in total. The pill works best I find but due to side effects I've had to come off it. I'm full of adhesions so more surgery would not be good. My lesions are very small (or were) but splattered all over my pelvis and not suitable for blasting. I suspect my bowel and bladder are involved too. I have no one to look after my children if I have surgery either so it's a big no.

You are not alone. I am a long term sufferer and have had similar symptoms occasionally. Had artificial menopause twice for a year each time, which gave respite. I was eventually referred to a specialist centre and most of the legions were removed. It was life changing for a while although symptoms did gradually come back. I was offered drugs to prevent reoccurance but fertility was an issue at that point. There are drugs ( tranexamic acid?)to stop the bleeding and the pain which you may be able to get from a pharmacist or gp as a temporary measure if you are going away ( maybe that's what you already have). Anti spasmodics can help with the pain. I now have a marina coil and am pretty much symptom free, although it took time to have a major effect. I was offered a hysterectomy along the way but it wasn't the right time for us, and reading around, I'm not convinced it's a one size fits all solution that would have worked for me.
There is a website endometriosis UK where you can find information.
I hope you don't get your weekend away ruined by this.

Sorry. Cross posted. Didn't mean to write so much.

I came off the pill due to the side effects. Too much bloating. I found the mirena got around that.

A rummage through the cupboards has revealed tranexamic acid and mefenamic acid. A combination of maximum doses of those was effective for me. Took about 24 hours to kick in but stopped the bleeding and pain. Might be something to ask to try if you haven't already.

I can't take NSAIDs unfortunately.

Err OP I get this (I have actually passed out before now) and that's cos of poo more than endo. You are on v constipating pain killers, were you bunged up? I have suspected endoscopy on bowel thus any attempt at doing a poo when I'm on results in as you describe.

I would try and take as much movicol or other stool softener as possible and keep on to make things much softer and easier to poo.

It really is an awful combo you have my full sympathies

Sorry, that wasn't helpful then.