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Endometriosis UK
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Diagnostic lap- minimal endo removed but still in pain?

I had my diagnostic laparoscopy 8 days ago, performed by a BSGE endo epecialist. I had quite severe symptoms so was expecting it to be bad but she said she only found a few spots of "very minimal" endo in my pouch of douglas, both uterosacral ligaments and vesicouterine pouch, which she removed (she said it was excised, although the surgeon I saw on the day said they ablated some..), and I have now been discharged. However, I'm still in pain (not just surgical pain- the same pain I had before) and unsure what to do now!

My symptoms are pelvic pain mostly during periods but also throughout my cycle, left leg and groin pain/numbness, pain and bleeding during and after sex, regularly bleeding old blood mid cycle, constipation, bloating, fatigue. I've also been having other weird symptoms like pain/numbness in arms, shortness of breath and stabbing pain in centre of chest, so thought I might have had endo on diaphragm but she insisted she checked the whole underside of diaphragm and everything was clear. I have been tested for what seems like everything else possible (STIs, PID, smear tests etc) and everything is negative. I wondered about adenomyosis, but my I've had several ultrasounds and an MRI come back clear, plus my consultant said the uterus didn't look adenomyotic.

Just wondered if anyone has had this issue and figured out something else was wrong further down the line? I know this is not normal for me- I've never had a painful period in my life until January this year (I'm 29), now I feel like I'm going insane!

Thanks :)

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If you only just had surgery 8 days ago, your body is still healing and can take up to 3 months before everything is healed etc.

I had my mine nearly 3 months ago and only just about getting back to normal without being in pain. Apart from the first day of my periods which have always been bad but used to last a week and now only last 3 days

Just keep an eye on it but you’re just in the healing stage xx

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ah that's good to know, thanks for the reply :)! Did you have extensive excision? Also, can i ask what kind of pain you've been in- is it like surgical pain or the same pain you were in before? I was just worried because mine feels like exactly the same pain i had before, not surgical pain! xx

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I had excision surgery on stage 2 endo. And a large cyst removed.

It’s not surgical pain anymore but I do get cysts forming and bursting which causes pain. But it still takes 3 months or so for things to settle down. Could be why you feel the same way atm as your organs don’t like to be moved and prodded haha. Xxx

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aw, that sucks for you- I've heard ovarian cysts bursting are the worst pain imaginable!

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After I had my laparoscopy, I felt a slight improvement in the area where they found my Endometriosis (between the womb and bladder). However all my other general symptoms related to having he disease continued- daily pain in the lower back and abdomen, fatigue and bowel and bladder problems. It's unfortunate that laparoscopies can't cure this disease altogether!

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Yeah, it is definitely unfortunate! Did you consider adenomyosis as a source of your pain out of interest? It can be responsible for a lot of those symptoms too, I've heard.

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