New to the group :): Hello. I've just... - Endometriosis UK

Endometriosis UK

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Claireyboots profile image
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Hello. I've just joined this group today. I've had endo and an ovarian cyst for years but never had anything like this. Yesterday I started sweating and got intense pain all around my stomach, after starting my period the night before. Emergency doctors have diagnosed me with an endometrial flare up. I'm now struggling to take deep breaths because of the pain (despite being on prescribed painkillers), and wonder if it's affected my lungs. They've also advised to keep close eye on appendix as pain originally concentrated on my lower right side. Has anyone had experience of this? I think I need to go back to my GP to get referred back to gynaecologist - I haven't seen surgeon for 3 years as never had any problems until now. Thanks in advance for any advice or support xxxx

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Claireyboots
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Heloyse profile image
Heloyse

Hi

Your pain sounds terrible - I really sympathise; you should definitely get back to your GP and press for a referral either to a gynae or preferably to a BSGE specialist centre if there's one in your area.

I've had lung problems too - the last time I was in hospital I had to go on oxygen for three days, as my saturation had fallen below 90%. In my case, it wasn't that the endo itself had spread to my lungs - I was told that, because I'd been taking shallow breaths due to pain, the base of my lungs had filled with mucus so they weren't working properly - I had lung physio daily and had to do breathing exercises - gradually I got rid of the mucus. The lung physio was really helpful as I now use the breathing techniques during bad pain attacks and so far I have been OK.

My endo was only diagnosed (finally) because it was thought to be appendicitis - I had intense pain and sweating and felt as though I was going to pass out. The docs did a lap to remove my appendix, but my appendix was OK, however they identified the endo. I have a large endometrioma on my right ovary - the symptoms are very similar to appendicitis as the pain is in the same area and the area becomes quite rigid and bloated, so it is one to be wary of as you'd obviously be at risk if you missed the onset of appendicitis due to the similarity of the pain. I think you should raise this concern urgently with your GP and get your appendix checked out to be on the safe side, and obviously seek emergency help if the pain becomes severe again.

I do hope your pain eases off and that you get good support from your GP!

H xxx

Claireyboots profile image
Claireyboots in reply to Heloyse

Thanks so much for your reply. It's good not to feel alone as it's a bit scary with the breathing thing. Going to see my GP in the morning as felt a bit let down by a&e. They didn't give me a scan or a blood test which I was surprised about. Thanks again- I'll let you know how it goes :)

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