Can endo be totally missed?

Hi I'm 40 and in constant agony. Have also the symptoms of endometriosis even had laparoscopy today as well as endometrial ablation but doctor said organs looked fine and could see no sign of endo. I'm so stressed now because no one at the hospital could tell me what the next step is. For 3 weeks out of every cycle I don't sleep because of the pain. Also had scans and biopsy but to no avail. Any advice would be greatly appreciated.

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  • Hiya xx I am in the same position as you, doctors were convinced I had endo but found nothing during lap. I am about to have a hysteroscopy and the coil which in a letter they explained is being done to treat 'hidden endometriosis' so I feel do I have it or not?! Wish they would just investigate more rather than a quick fix. After my lap I felt really confused and in the dark so I booked a GP appointment who went through my notes and explained every huge word or proceduce etc and gave me advice on what to do next I really reccomend you do that, they can make referals or hurry things along too so if you discuss that you don't know whats going on I'm sure they'll help!

    Hope it goes well xx

  • Hiya xx I am in the same position as you, doctors were convinced I had endo but found nothing during lap. I am about to have a hysteroscopy and the coil which in a letter they explained is being done to treat 'hidden endometriosis' so I feel do I have it or not?! Wish they would just investigate more rather than a quick fix. After my lap I felt really confused and in the dark so I booked a GP appointment who went through my notes and explained every huge word or proceduce etc and gave me advice on what to do next I really reccomend you do that, they can make referals or hurry things along too so if you discuss that you don't know whats going on I'm sure they'll help!

    Hope it goes well xx

  • Hiya xx I am in the same position as you, doctors were convinced I had endo but found nothing during lap. I am about to have a hysteroscopy and the coil which in a letter they explained is being done to treat 'hidden endometriosis' so I feel do I have it or not?! Wish they would just investigate more rather than a quick fix. After my lap I felt really confused and in the dark so I booked a GP appointment who went through my notes and explained every huge word or proceduce etc and gave me advice on what to do next I really reccomend you do that, they can make referals or hurry things along too so if you discuss that you don't know whats going on I'm sure they'll help!

    Hope it goes well xx

  • Hiya xx I am in the same position as you, doctors were convinced I had endo but found nothing during lap. I am about to have a hysteroscopy and the coil which in a letter they explained is being done to treat 'hidden endometriosis' so I feel do I have it or not?! Wish they would just investigate more rather than a quick fix. After my lap I felt really confused and in the dark so I booked a GP appointment who went through my notes and explained every huge word or proceduce etc and gave me advice on what to do next I really reccomend you do that, they can make referals or hurry things along too so if you discuss that you don't know whats going on I'm sure they'll help!

    Hope it goes well xx

  • Hiya xx I am in the same position as you, doctors were convinced I had endo but found nothing during lap. I am about to have a hysteroscopy and the coil which in a letter they explained is being done to treat 'hidden endometriosis' so I feel do I have it or not?! Wish they would just investigate more rather than a quick fix. After my lap I felt really confused and in the dark so I booked a GP appointment who went through my notes and explained every huge word or proceduce etc and gave me advice on what to do next I really reccomend you do that, they can make referals or hurry things along too so if you discuss that you don't know whats going on I'm sure they'll help!

    Hope it goes well xx

  • Thank you hriverson. This makes me feel much better I was beginning to think I was going mad! Did you go back to your own Gp to discuss the options?

  • I'm in the same posistion and I'm sick of being in pain, usually 3 weeks out of four, all day all night. I had a diagnostic laparoscopy in July and no endo or pelvic inflammatory disease was found. After seeing my consultant to discuss the findings they signed me off! I suffer from anxiety and depression among other things and the constant pain I believe is preventing my recovery from depression. I recently visited my GP to discuss the constant pain (a crampy burning sensation, which I get in my lower back, hips, thighs, all down my lower and legs and sometimes feet, sometimes lower tummy). He examined my legs and back, which I've never had done before and has referred me for a blood test. All the symptoms and pattern point to endo but they didn't find the evidence. Pain relief seldom works for me. What could a blood test find? What else could this pain be?

  • This is exactly the pains I am feeling. I have spoken to some others who say it could be hidden endometriosis as I have had 2 caesarean sections. I have had a biopsy but not sure how that can see if the endo is in the scar tissue when they took it from my womb. So fed up.

  • Hi

    After suffering for years i found a consultant who would listen and believed i had endo so he did a lap toesee the extent but was surprised there was none. He's suggested seeing a bowel specialist as some bowel conditions can be affected by your cycle but giving the symptoms of endo. He's also suggested having the coil just encase its been missed. Hope this helps. The whole process has been a bit of a kick in the gut for me. I was glad when he said it was endo and it was treatable but now imback at square one and wanting answers.

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