Suspected Endometriosis is all this pain normal?

[Jasmineleah]

Hi, I’m just wondering what other people’s symptoms are. I keep reading blogs online but they’re scaring me quite a lot. I can’t walk at the moment and it started pretty suddenly in Oct/nov last year. They thought I had appendicitis and then a kidney infection. I went to the hospital as I had a high temp and they said they can’t find anything wrong. I had an ultrasound and I have cysts on my ovaries. But the gynaecologist said that it’s likely I have endometriosis so she’s sending me for a MRI scan. I’m actually starting to consider getting a wheelchair so I can at least get out of the house. Can anyone tell me if it gets any better and any help with pain relief would be really helpful. Thanks for reading 😊

[livvi_livvi]

Hiya and welcome to the group. I totally understand what you mean about reading things online sometimes they can be so awfully scary. The first thing to know about Endometriosis is it is very individual so it is always a bit of trial and error with things just because somethings helps one person doesn't mean it will suit you and just because someone has found a treatment not to work doesn't mean that it might not be your go to. So my advice would be to be willing to try all options with an open mind but if they are not working then do go back to your medical help (gp or gynae) and get further help.

I would suggest it might help to have a look at the endo uk website (endometriosis-uk.org) which is full of resources and information. Unfortunately, the one thing that is very often seen with endometriosis is the extreme pain it causes us to have.

None of us on this forum are qualified to give medical advice so you should always go to see your own Drs and talk through your condition with them especially in terms of pain relief. Some I have found useful you could ask about though are mefanmic acid, naproxen, co codamol, paracetamol. Also, my god send pain relief item is a wheat bag.

I hope this helps in some way. Sorry for the rambling on. 😊

Xxxx

[Moon_maiden]

HiEcho livvi, it’s really important to talk to your doctor. Try not to get overwhelmed, write symptoms down so you have a record of what’s happening. If you aren’t working, try and get a hobby that can distract you.

I’m currently on Amitriptyline for nerve pain, which might be working more than I realised as I forgot to take it last night. Tramadol, paracetamol and occasionally Oramorph. Wheat bags very useful 🙂 I’ve ordered a cordless heat pad, but not arrived yet.

You seem to have a good gynaecologist, ask your GP to do an urgent referral to the pain clinic. MRI doesn’t always show endo, but it’s the better scan, showed a bit on mine.

You’re doing well so far 🙂

[TennisAM]

Hi Jasmineleah

I used to read stuff online and I would feel very stressed. I'd advise that you stop doing that till you're in the right mindset to do some research. It took me a long time to get to that place but I can now read about it without feeling stressed.

There are many things you can try for the pain, naproxen and a ppi such as omeprazole. The omeprazole is very important, don't take naproxen without it as it will damage your stomach. This painkiller can only be taken 7 days then needs a break. Some find other things like amitrypteline helpful (sorry can't remember how it's spelt). It does take some weeks go kick in though I believe. Its an antidepressants that's used as a painkiller.

There's something called a tens machine. They can be as cheap as £20 from boots or equivalent store or expensive such as Livia. I haven't tried one myself but others swear by them. They are worn on the abdomen and some say they reduce pain and others say its a useful distraction.

There's many natural things that help with pain if you're interested then I'm happy to share via private message. I can't post links publicly as it's against the page rules.

Feel free to message me if you want the additional info x

[Jasmineleah]

Hi everyone, thank you for your lovely messages, I’m going to talk to my GP about possible stronger meds and look into getting the tens machine. I already live next to my hot water bottle, which is ok at the moment but not sure what it’ll be like in the summer months 🥵

I’m feeling so depressed about it all. I’ve always loved waking through the hills and now I just worry that I’ll never be able to go walking again x

[Prettythings1]

I hope you get some answer soon keep on at your gynaecologist for the MRI. You are doing so well

I get Fed up reading blogs etc it it’s all I seem to do at the moment because I’m waiting for a diagnosis I know I shouldn’t I should stop but it’s all too consuming I’ve tried the endometriosis diet or ages it didn’t help but helps for some people. ( I’m still avoiding gluten and dairy as in a habit) I found that very consuming as well It could help your pain. Some swear by it If you search Endometriosis diet on here there’s lots of information xxx