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Possible endo - any advice?

(5 Posts)
FaithEverPresent Wed 18-Oct-17 16:33:31

I have had right sided abdo pain for over year. I was admitted with ? Appendicitis, twice. Scans haven’t revealed much. I’ve has ultrasounds, CT, gastroscopy, colonoscopy - only found hiatus hernia and gastritis. The pain is still there, it got worse suddenly in July (second admission). I’m now waiting for a Gynae appointment with a query endometriosis diagnosis. I am in a lot of pain. I’m on paracetamol, 60mg codeine 4 times a day and pregablin 150mg twice a day. I can’t take anti-inflammatories.
I’ve been off work since July but I’ve now been told by Occ health I need to try and go back to work now because of how long it’s been and how long it still might be to get a diagnosis. Obviously the Gynae specialists might not think it’s endometriosis or they might not find anything when they investigate.

Assuming it might be endometriosis - Any tips on minimising the pain? Has anyone had success with changes in diet? I am loathe to go back on the pill as it makes me feel very low and kills my sex drive but accept it might be necessary. Alternatively has anyone had anything similar and got a different diagnosis? Any advice gratefully received!

FaithEverPresent Fri 20-Oct-17 07:56:01

I should add my Mum died of ovarian cancer 10 years again. Although my scans were normal, it’s at always the back of my mind.

MountainDweller Sun 22-Oct-17 01:02:31

I have endo. Had a horrible time getting diagnosis, in fact I only got a diagnosis at all because coincidentally we moved abroad and got private health insurance.

Try to get an appointment with a gynae who has some knowledge about it, otherwise you’ll likely be fobbed off. Endo is unlikely to show in a scan, you need a laparoscopy to diagnose and ideally treat (by excision, not laser) at the same time.

Endometriosis UK is a good place for info. There is a list online of all the specialist endo centres in the U.K, google it! Im pretty sure you have a right to be referred to one of them.

I had two ops, the first with a specialist where I live, who unfortunately did not find all of the endo lesions. I researched specialists in the U.K. and had a second op with a wonderful, kind surgeon in Guildford. Due to my delayed diagnosis I do have some permanent damage which could only be fixed by hysterectomy (not trying to scare you, but getting treatment quickly will give you the best chance of a good outcome). Am currently on long-term gnrh treatment which is working well for me.

Good luck. Happy to answer any questions.

Waddlingwanda Sun 22-Oct-17 01:09:59

I have it and I did a massive diet change to help. It was a no dairy, white bread/rice/pasta, no sugar. And upped my iron in take.

It did seem to help plus I lost a lot of weight, but then I got pregnant so I'm not sure how much it actually did as I've had no pain since first pregnancy (and seriously hoping I never do again!!)

Worth a try though, only thing I found that helped otherwise was the pill and it took a lot of trial and error. I also don't want to go back to that.

AuntyElle Sun 22-Oct-17 01:17:16

I've had low right-side abdo pain, gradually increasing over time. Not appendix as I've had that out.
GP first said possibly fibroid pressing on bowel. Then said maybe small kidney stones passing through. I don't feel like it's being take particularly seriously, although the pain is nowhere near as bad as yours.

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