I spoke to a consultant last week and finally felt listened to. I have had one laparoscopy which was clear 2 years ago but the pain has gotten so much worse since. He said that endo can still be developing in your 20s enough to be seen. He said that I do have endo but it still might not be seen on laparoscopy so we’re trying other things (pelvic floor physio) first and basically waiting for it to develop enough I think.
I just wanted to make this post for anyone that’s in the same position as I have been. Being told that I have to live with the pain and that there’s nothing wrong with me when we all know our bodies and that it’s not right!
Keep fighting girlies we’re all here for each other 💛🎗
Courtney xx
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CourtneyD
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It is good to be listened to but it is important that you are told the right thing.
How has he confirmed that you have endo? He can suspect that you might but without it being seen in a scan or confirmed at a lap there is no way of knowing that you have it.
If your lap was done by a general gynaecologist he/she might not have searched your pelvis thoroughly or not had the experience to identify endo in all its forms and it might have been there two years ago and been missed. It could have developed to a stage now that no one can determine without proper investigations. This is a very worrying approach - if your pain has worsened you need referral to a gynaecologist with a special interest in endo and expertise in diagnosing it as required by NICE.
Hi! I didn’t want it to seem like I was just chucking out comments I just thought it might be nice to pass out some hope but can now see what you mean!
He is a gynae that specialises in endo and has seen this happen many times before. I think he was just going off my symptoms and we went through every other thing that I have tried that wasn’t related to endo and how they haven’t worked.
The person that did my laparoscopy was a gynae with specialisms in endo but I know multiple patients that have had theirs missed so you’re right it could have been missed!
My new consultant did look at the images but didn’t say any endo was present. I feel as though I’ve waited for someone to slightly understand for so long I just wanted to give others hope! I think I got ahead of myself but I am still seeking guidance from my doctor as well as this consultant to get to the bottom of it! Thanks for your concern I completely understand where you’re coming from!
He said he was more than happy to do another laparoscopy soon but is concerned that it still may not show and cause more adhesions in the long run. Should I push for another lap? Thanks so much for your response!xx
It will depend on your symptoms. If you go back to what your symptoms were that took you to a gynae 2 years ago and to how they are now can you describe them and how they have worsened and any new ones, at period time or not.
Don't be so hard on yourself !he could have been referring to microscopic endometriosis which is not visible to the naked eye do a little research on this type of endo there are a few people on this site that have it and are in pain but as they can't see it they can't do much (only poster to reply to My comment please )
Ah amazing thanks for your help I’ve never heard of that before I will definitely do some research into that!
I feel as though I’m just clutching straws at the moment I’m desperate to sort it as everyone is! Just starting my teacher training and it’s so full on and I’m so scared I’m going to have to stop so I’ve literally tried everything so that bit of hope last week got me overexcited I think😂
I really think you should stay hopeful investigations you have had sound positive to me !and it could be microscopic You have seen a specialist not a general gynaecologist which is positive .I've heard of a lady on here had a lap and nothing was seen still in pain and she had at least two laps by a specialist and they said it was microscopic.
I'm so sorry you are having lots of worries on top of that I hope you manage to find some ways to manage the pain diet really helped me good luck (poster only to reply to my comment)
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MRI clear, help please
MRI for diaphragm endometriosis 
Waiting for my second lap and feeling like I'm going slightly mad?
Suspected Endometriosis - Laparoscopy all clear :(
Ultrasounds/MRIs - My experience and why you need to advocate for yourself if they don’t show Endo!
