When do you know you need to go to a&e for endometriosis?

[Lulucoxoxo]

I am currently on week two of an awful endometriosis flare up, I was in a&e last week as I was unable to stand, eat, and shower. When I arrived they left me for about an hour in a half crying in a wheel chair and then gave me some morphine before taking me up to gynaecology, gynaecology then said I need to manage my pain at home with tramadol at home 100mg every 4 hours. I went home and done this, I was still in pain.

I spoke to my doctor who then prescribed me morphine 2.5mg on top of the tramadol, for one week. I am still in pain. On top of the pain I have started my menopause injections and I am only 23, this has caused my skin to break out, I’m already having hot flushes and I feel horrid.

I am also having rectum bleeding currently, I’m bloated everyday, cramping, painful legs and sore back. I have endometriosis of the bladder and pouch doglous, which the NHS have said they will not be doing another laparoscopic surgery for, even though I feel like I need it. I also have been diagnosed with chronic pelvic pain and stage 4 endometriosis.

My question is when do I know when I need to go to hospital? I just feel like I go there and they never know what to do with people with endometriosis?

[HolsBamboozledwomb]

You sound like your having a really bad time! I was in this position about a month ago now. I went to our local A&E department, where the Dr there told me endometriosis was only around the period and at no other time of the month,He told me that I probably had PID because I had had it in the past. He told me I had a vagina issue and not a womb issue, because if it was my womb I would have a temperature. I was in so much pain, I was literally rolling around and crying and I was left for 5 hours! I was in too much pain to tell him he was wrong! And I had no advocate because I wasn't allowed anyone in with me! So I feel your frustration deeply!

Luckily, I have some good GPs that have done what they can to help with the pain, and so far this has helped me and may help you too? They prescribed me a nerve blocker called Gabapentin, I believe this has been a better pain killer in the long term! I also have naproxen daily and co-codamol 30/500 when I need it. I am also on the mini pill now, which has stopped my bleeding entirely, which to a degree has helped, I do get a whole amount of side effects but at least the bleeding is under control 🤷‍♀️

If your in pain and don't know what else to do, go to A&E, they may no quite know what to do, but they have really strong pain killers that can help. Stay strong. You are strong! Make sure you are kind to yourself and rest with all the hot water bottles and anything you find comforting! (I have started cross stitching)

And I hope you find something that helps with your pain soon!

[Moon_maiden]

HiSo sorry you’re experiencing so many issues with drs.

When you say NHS, do you just mean the consultant you saw at the hospital? We’re they a consultant or registrar? Even if consultant, it’s one view not the whole NHS.

I had crap consultations with two Endo specialists, one who didn’t do the op I thought I was having and the second are taking the view you shouldn’t have many operations as it doesn’t help long term. To me this is unauthorised research as no one knows yet. I’m on a list for MDT review with a third. I shouldn’t need this at all.

Your GP can help with pain relief, mine has been better than the pain clinic at times.

Don’t give up on the view of one consultant, you know how you feel. You aren’t tied to one hospital, you can be referred anywhere. GP’s prefer to keep it within their own area but aren’t obliged to.

We want an op because we hope that will work, unfortunately there is no guarantee either. I’m up for trying because I know it will help, I have organised it that there is the right colorectal involvement where there wasn’t.

Does your GP know about the rectal bleeding? This must be investigated on its own. They should refer to gastroenterologist for checks.

The pain nurse said that taking paracetamol regularly helps opiate meds work more efficiently. Gynae told me it can take 2/3 injections to help the pain, they do work for some, not for me.

Endo is in the top twenty most painful NHS conditions and many of the others aren’t as long lasting.

It’s difficult to keep going, always support here 🙂