Hi hope someone can help don't know what ... - Endometriosis UK

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Hi hope someone can help don't know what to do had lap yesterday no endo found told they would not see me again for six months?

Treanor profile image
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No answer to all my pain .. Groin pain ,leg pain ,lower back ,joint pain ,severe bloating, pain with intercourse , pain under ribs . Now have this eight years . Found cysts on hip said it was not endo related left it there can any guide me

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Treanor
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Impatient profile image
Impatient

Have they checked you for Adenomyosis? if not then that's your next task. Get back to your GP and discuss this and see if an MRI can be arranged for when you are on a period. Hopefully this will solve the mystery.

It doesn't rule out endo, but when there is little sign of endo or the usual tell tale signs like adhesions but you still have many of the symptoms of endo with a cycle to your pains so they are worse when you are on a period then the natural next step for investigations after endo is shown not to be raging everywhere is to look for adeno.

The website for all things adeno is adenomyosisadviceassociatio...

Did you by any chance have hormone treatment before having the lap op? Were you on any pills or injections to supress periods and endo. If you were and the endo is currently dormant then it can be missed in a lap op. ..... and can be missed when looking for adeno. So the best way to be sure that endo or adeno is active is to have a period just prior to a surgery or be on your period when you have the op. Active endo and adeno is much easier to spot.

On the good news front, clearly what ever is wrong is not a matter of adhesions and scarring everywhere and the organs are not stuck together and there's nothing more visible to cause problem, so while you still do not have a diagnosis of the cause of pain, the results are actually very good news.

If adeno is ruled out too, then sciatica is probably the next most likely cause of your pelvic area and leg pains.

Hope you have a speedy recovery from the op. Take it easy for a few days and do a bit of research in to adenomyosis so you know what you are talking about when you speak to your GP with a view to requesting an MRI scan on it.

Treanor profile image
Treanor

Thanks for advice will look at this do some research .. Had no hormone treatment had marina coil fitted during lap .

riotsnotdiets profile image
riotsnotdiets

Similar thing happened to me, so I can only empathise - they found adhesions which were divided but said these weren't endo-related, and tried to say it's because I'm constipated (I was constipated on the day of the op but don't have chronic constipation, I go to the loo 3-4 times a day so if anything it's the opposite way!). I haven't been offered a follow up with the gynae at all. I'm also worried about adenomyosis (though I don't think that could cause the heavy bleeding I get with my period) but I really feel fobbed off by the gynae. Going to see my GP next week as, despite being over a week after lap, and definitely not constipated (!) I am bleeding constantly after having the mirena put in (including clots as large as my thumb, eww), still have all the pelvic pain and urinary symptoms that I had before, too afraid to have sex because of the pain (even if I wasn't bleeding) and just don't feel like I have any answers. x

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