New type of pain?: I've been living with... - Endometriosis UK

Endometriosis UK

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New type of pain?

cupcakegirl profile image
6 Replies

I've been living with endo for 20 years, diagnosed for 11. Last night I woke up at 5am with a pain I've never had before. Sometimes I have pain that feels like my uterus has been stretched and the muscles are all fatigued, this morning it was similar to that but covering my whole abdomen, from my diaphragm to my pelvis. It was a constant deep aching type of pain with a slight element of that stretched feeling.

My period if it's on time should arrive tomorrow night, but I'm not very regular. My bowels don't work normally any more, so I have to take laxatives. I was taking 15mg of bisacodyl every 4 days in order to go but those days were awful. I now take one a night and use glycerine suppositories to make me go, as occasionally take the full dose if I feel like I haven't been enough for a few days. I'm only a couple of days after doing that. I really couldn't tell if the pain was Endo related or bowel related because it was everywhere. I tried to go to the loo but couldn't. Ended up taking lots of painkillers and going back to bed with my heat pad - got to the point where I was considering hospital but haven't been admitted for pain in years as I prefer to deal with it myself.

I have a pre-op assessment on Monday and then my umpteenth lap on the 24th so if it's endo related it will be death with very soon. I'm just worried in case it's something else. Has anyone else ever had this type of pain and been told the cause? Just lost my mum to stomach cancer which spread to her ovaries and I'm very scared of new symptoms as a result.

Any input gratefully received - if it returns this weekend or anything else happens that's unusual I will go and get checked out.

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cupcakegirl
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6 Replies
mablesky profile image
mablesky

Just a thought and of no help to you right now but wonder as you have had so many surgeries could it be adhesions I suffer chronic pain from this after all if my surgeries

And hopefully getting gat sorted soon

I wish you all the best and hope pain subsides

cupcakegirl profile image
cupcakegirl in reply to mablesky

Thanks. I'm sure I do have some adhesions - on my last MRI my womb is now tilted back so it's probably a bit stuck, but the only time I've had really bad adhesions before is when I was first diagnosed. Once they were removed they didn't really come back very badly, none of my later laps found severe adhesions so I'm lucky there. I do get pains that I think are caused by adhesions but this felt different - I don't know what it was, it was very odd but it hasn't come back since. Fingers crossed it won't! x

dixxx profile image
dixxx

How many laps have you had

cupcakegirl profile image
cupcakegirl in reply to dixxx

Too many! I had two diagnostic laps because they missed it on the first, then two treatment laps by a specialist, the last was in 2007. I had another about three years ago that was totally useless so I'm now back with the specialist. So I had quite a few initially only one in the last 8 years. I've been off all hormones for almost two years which I've never done before so I don't know what to expect from the results this time.

dixxx profile image
dixxx

I've had 4 and they've said no to anymore

cupcakegirl profile image
cupcakegirl in reply to dixxx

I think it depends on a lot of factors - how many you've had and in how many years, whether you've had problems with adhesions following surgery (I haven't, luckily), your consultant's opinion on multiple surgeries etc. I know lots of ladies who've had lots more than I have, and some who've only had one or two. It definitely varies a lot. This will be my fourth treatment lap, but that's over the course of ten years. When I'd had quite a few in a short period of time they were more concerned. Sometimes laps can do more harm than good, but they can't say you can never have any more as you may really need one at some point. In my case, I've tried every treatment available and will not go back on hormones as we want to try for a baby, so a lap is my only option at this point.

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