Has anyone been told they had endo in first lap but then none in the second but has endo symptoms???

Hi,

I was diagnosed with endo 16 months ago in pouch of douglas for which i had ablation then six months of zoladex then six months of depo.

I had mild endo but severe pain.

The pain gradually got worse again and I had my second

Lap 11 days ago where I was expecting them to find it on my bowel.

They found no endo, just resistance unblocking my fallopian tubes which they managed to do.

They discharged me and said can't be endo pain as not bleeding as still in menopause from zoladex (im 30!) and discharged me saying get gp to refer you to gastro team.

I was devastated!

It doesn't make sense to me as I have all the endo symptoms, zoladex helped sooo much despite the side effects and we all know endo can effect you any time of the month and theres no cure.

It was a top specialist who did the op but only saw the reg so trust the op went well. I know how lucky I am as so many of you ladies have had your organs destroyed but ive been off work for 3 months now with severe pain and fatigue and i want my life back.

Have any of you had similar stories with your endo? What happened next? Feeling lostxxx

3 Replies

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  • Hi lilil, I am so interested to see your posts - had a quick nosy through as I was searching for rectal pain bowel symptoms as struggling this evening. Making this super short as it's 2am and I am moving house tomorrow. I would very much like to talk with you about your symptoms - will post more information tomorrow or v soon if able to and if you want wod be happy to give you my email or number. i too had endo found in pouch of Douglas with first lap, and removed, my whole story up with endo at least is scarily similar, so much bowel problems severe pain but mild endo, second lap showed nothing!! Suspected it to be covering my bowel also but they did find problems with my fal tubes like you though it was told both mine were blocked :(. I continued to have symptoms similar to those described in your posts with pelvic pain chronically - after seeing a colorectal surgeon finally I have been now diagnosed with prolapsed bowel - intersusception, rectocele, and enterocele as well as a slightly prolapsed cervix. I hope you do not have these problems also - but thought I should post briefly now incase you have any of the other symptoms of prolapse, some of your pelvic pain descriptions rang alarm bells with me. It took a while to be taken seriously and get the correct test for this as it is thought of as an older ladies problem, I'm 25!! I am convinced this is connected to my endo/adeno but more specifically have been told this could be caused/ or at least pelvic structures weakened by the surgery on my pouch of Douglas. Obv no official declaration of this and prob never be but when I asked firmly there was acceptance this is one option of many possible causes. Pouch of Douglas is a fairly crucial area in pelvic support. Sorry so tired spelling is awful and explanations very short. Would love to talk more with you soon if you get this late post. Hope you get to the bottom of your pelvic pain , god knows I'm still trying! Good to know someone else with similar story tho I hope yours isn't prolapse as well and just the adeno/endo please have a look into it and get ruled out if you do have symptoms. Fox face xx

  • Hi

    Had to write as I feel I am in a similar position to you so I am interested to hear what others write.

    I was diagnosed with minimal endo but severe pain, I wasn't told where the endo was located only that it was on my right side where I had been experiencing the pain. That was in 2011 . I am currently trying another coil to see if this helps with symptoms (I don't hold out much hope but the specialist said if I tried it for 6 months and it didn't help she would give me another lap). I'm having hellish bowel issues and just want this 2nd lap to see what's going on. I can understand you being devastated.

    I had my bowel and bladder checked a year after the 1st lap as symptoms improved but didn't go away and are gradually getting worse.

    What type of ablation did you have?

    Kx

  • Hey, I just had laser ablation not excision.

    It's so frustrating!

    How are you getting on now?x

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