Laparoscopy results found no endo - confused and feeling lost

[Bluetiger1]

Feeling pretty devastated to be honest. I really thought I was finally going to get an answer for my constant pain and since I had all the other symptoms related to endo (bowel and bladder) really thought that was going to be my answer. They showed the pictures from the lap and said everything looked healthy and no endo was found they checked uterus, ovaries, bowel, bladder, pouch of Douglas and abdomen wall nothing was seen.

I guess one side to it is that at least I am ‘healthy’ and can rule out such a severe and debilitating disease that so many of you incredible people are battling with but this still does not give me answers. The surgeon was nice and talked me through it but obviously since no endo was found offered no hint to what it could be explaining it could still be gynae related or ‘just hormones’ which was so frustrating as it makes me feel like everything is in my head. I had waited 2 YEARS for this lap (of course delayed due to covid and cancelled twice) and it feels like a huge waste of my time and energy. I had switched to the depo provera back in November 2020 and saw a huge improvement in my symptoms (especially bowel I was actually going regularly and was not seeing anywhere near the amount of discomfort and pain) and though maybe the endo had begun to heal but they still said if it was old or ‘scarred’ they would have seen some evidence of that. I still suffer from pelvic pain, nausea and bad fatigue as well as an uncomfortable bladder. I honestly don’t know what to do and the thought of having to start all over looking for a diagnosis is just depressing.

As they showed the pictures I can’t really argue the fact I think it is endo they were a good team of surgeons and I do trust their findings just a bit in denial at the moment. Has anyone else had a similar experience and if so what were your next steps?

[EndoJaz]

I am so sorry you are going thru this, I just know it’s so hard to find, I had a hysterectomy and excision of endo and the pain still continued and then 4 yrs later it was found during another lap, it must have been there all along as the pain didn’t go after the hysterectomy. Don’t give up and keep going back to the GP until you get an answer to your pain. I was told I had a hernia and when the surgeons went in they couldn’t find it although it showed up on 3 scans before. It’s such a horrible feeling. We shouldn’t be left in pain it’s so unfair so I know it’s hard but keep fighting. X

[Bluetiger1 in reply to EndoJaz]

I was worried they didn’t check everywhere but the surgeon and team seemed like they were experts and had had a pretty good look around! I’m just worried as my pain is quite low near to my pelvic bone that they didn’t have a look at the ligaments. I have an appointment with my gp next week so hoping to get referred for other tests to try and rule anything else out. I want to ask for an mri but I know they are hesitant to send for those will have to see. Thanks for your words of advice it’s really nice to speak to people and feel like my pains are valid and I’m not imagining anything! Take care x

[Gsdmum13]

Hey! I’m in the same position, had my lap exactly two weeks ago and found nothing apart from a normal adhesion? I was sobbing, just like you I was hoping to get an answer for all my symptoms. On the flip side, I really didn’t want it to be endo either. My consultant is superb, he validated my pain etc and wants to get to the bottom of it. It’s nice to know everything looks healthy, but then where’s the pain coming from? It’s sooo frustrating! He said we could do more tests but didn’t specify what. I’m just worried how long I’ll have to put up with the pain... 4 weeks until my follow up. Have you already been given a date? Sending lots of strength your way!

[Bluetiger1 in reply to Gsdmum13]

Sorry to hear your in the same position but as you say lucky no endo has been found I was just so sure with all my symptoms it was that! That’s really good your surgeon was helpful and you are getting more tests! Mine just let me know it wasn’t endo and that was it I don’t even think I get a follow up nothing else was said to me so I have a gp appointment next week to try and figure out next steps! I had my lap last Monday and haven’t heard anything about a follow up assumed because they didn’t find anything that’s all I was getting from the hospital. Hope you get to the bottom of your pain and issues it’s horrible not knowing what’s wrong sending love!

[Gsdmum13 in reply to Bluetiger1]

Hey! I’d suggest contacting the secretary of the consultant you were under and ask for a follow up. After surgery we’re still out of it a bit and I’m sure you, just like me, have even more questions now then directly after surgery. Please don’t let them fob you off! We know our bodies and somethings not right. Hoping you have a speedy recovery and get an appointment soon! xx