No endo found

[El_mai]

Hi all,

So I had my first lap this morning and am now home and recovering. However, they didn’t find any endo and everything presented as normal. I have a follow up appointment in a few weeks to discuss progress and when I spoke to the surgeon afterwards she said that she didn’t expect to find endo, and that it may be best to surpress hormones by putting me either on the mini pill (which i’m Already on but still experiencing pain and periods) or the combined pill (of which i’ve Been on several different types since I was about 13 and this was worse than the mini pill).

She did talk about possible referral to other specialists (bowel specialists etc) to try and determine the cause of my pain- I get what most woman experience as ‘normal’ period pain on a daily basis and then my period pains are so bad to the point where I struggle to stand up and painkillers just don’t touch the pain. I also get quite bad bloating- I can go from being a size 6 with quite a flat stomach to a size 10/12 with bloating☹️

Has anyone else had experience of similar results and referrals? Does anyone have any suggestions of what questions to ask and what route it might be best to go down next?

I’m so frustrated to not have answers and be in such bad pain everyday at the age of 20☹️

[weekari]

Hey,

So sorry to hear about what you're experiencing. As much as no one 'wants' to have endo, it can be so disappointing to go through all the stress of surgery to be told nothing was found and still no answers and therefore no further forward to getting relief. I went through that 2 years ago. I had been experiencing awful abdominal pain, insane bloating and severe fatigue. I never linked it to my period though, they were always fairly 'normal'. I'd been through gastro with nothing found so after an ultrasound found fibroids & elevated ca12, I was referred to gynae who reluctantly agreed to the lap. My GP was pretty sure I had endo so suggested I went on the pill while I waited. I had quite a significant improvement in my symptoms. But nothing was found in the lap so I stopped taking the pill. My fatigue was still pretty bad but my stomach issues were a lot better. About 6 months later I started getting hip and back pain. It gradually became really bad so I went to physio, that made it worse so I got referred to orthopaedics. An xray suggested inflammation so it was looking likely I had arthritis and got referred for an MRI. I got my results from that 2 weeks ago... No arthritis but Severe endometriosis! I couldn't believe it.

Apparently some deep endo can be missed in the lap and if the surgeon isn't an endo specialist, they can miss it. If I were you I'd push for an mri before they discharge you, even if you say so it can help them to know where to refer you.

It might not be endo you have but an mri with the lap together would give you a much clearer idea. I really hope you get some direction and something that relieves your symptoms.

X

[RachLL]

Hi!

First of all i hope you recover well! It could be many things and this is why its a pain because the pain and symptoms can be confused with so many other conditions! Have they looked into possible adenomyosis?

best wishes,

[Sarahlouisex]

Hi, sorry to hear you are going through this. I too had a lap but 3 years ago that found no endo. Except they done no referrals after just discharged me and I’ve been fighting to see someone again since. I really hope they get it sorted for you as it can be so debilitating. Sorry to not give you any answers to your questions but I know how frustrating and uspsetting it is. Keep fighting x

[RachLL in reply to Sarahlouisex]

Hi! im sorry to hear that you are still struggling. Do not give up! stay strong! xxxx

[Sarahlouisex in reply to RachLL]

Thanks lovely xx

[El_mai]

Thank you all ladies! At the time of writing this I was still probably slightly high on general anaesthetic and dealing with it quite well! Yesterday it hit me that I still don't have answers and I'm still going to be suffering what I termed 'endo pain' (even though its not endo pain because there is no endo) every day. I had a bit of a cry to be honest! It's just frustrating being so sure that you have something and that a laparoscopy will give answers and then it doesn't. But I suppose that I don't need to tell you all that because you've been there too. Thank you for your help and advice, maybe the follow up appointment will start to give me the answers that I need because this is exhausting!