No endo found

[MrsB1986]

Hi all i had my first diagnostic lap and a hysteroscopy done yesterday and i was a million percent sure i had endo but surgeon ( not a specific endo surgeon) couldn't find anything, no endo, no adhesions, nothing. I know i should be happy but I'm devastated as i now still don't have any answers to my suffering. He's discharging me from his care and said i need to go back to my GP and ask for bowel tests to be started, has anyone else had this happen to them? Thanks

[Bluerock7]

Hi, so sorry you have no answers this must be so awful for you! Hopefully you won’t have to wait too long for the bowel tests to be started x

[Arty09]

This happened to me and I continued to have symptoms for a further 10 years thinking I must be mad as I don’t have endo, but eventually I went to a specialist who found it many places including on the bowel. Now it is possible that it wasn’t as severe or visible the 1st surgery but non-specialists are not skilled in spotting endo as it has many different appearances. If you are are still suffering I would push to see a specialist. Did they take pictures during your lap? Ask for them and take them to a specialist. If possible you could pay for a consult privately with one who also does nhs then they can put you on NHS waiting list for surgery. The other thing to look at is whether you might have adenomyosis as the symptoms overlap with endo quite a bit. You can have this without having endo. This can be spotted on MRI. Don’t give up I was in exactly the same position as you and wish I had known that endo can be missed my general gynaecologists easily. I knew deep down something was wrong but I choose to believe that 1st surgeon. We know our bodies better that anyone and when something isn’t right. Don’t give up till you get some answers. Good luck! X

[Avourneen]

I know it is very upsetting when you cannot find any answers or even a diagnosis for what is causing your pain but I think this really is good news rather than bad. Endo is an awful illness and there is no cure and you don't have it. That is great news. I think you should try to go for a process of elimination, google which other things could be causing your pain gallstones, kidney stones, ulcerative colloitis etc there are a lot of different things that could cause the pain. It could even be appendicitis.

Which other investigations have you had ? If the gynae who did your lap is any good at all I think they would have seen any Endo. But there are a few surgeons out there who aren't great but I think being able to see it should be pretty basic.

Don't give up though, you have to be your own advocate and you need to push and push and not be fobbed off. Something is causing your pain and someone must be Abel to idenify what it is. I had numerous tests for bowel function, I had to eat small star shaped things that were then x rayed to see if food etc was moving through the bowel, I had a sigmoidoscopy to see what was going on at that end, nne of them showed anything as I had loads of endo on the outside of the bowel. But the endo showed up immediately on an MRI. I would suggest get an abdominal and pelvic MRI and a CT scan, go privately and get it done quickly and that should show up any problems in the abdomen that could be causing the pain. It could be many other things. But keep trying to find out what is going on. Don't let anyone fob you off.

Good luck with your health getting a diagnosis will happen and you will feel better when you do that, then you can work out hwta can be done to help you.Stay strong and keep fighting.

[Bluerock7]

So sorry to hear you still have no answers, especially after having to wait for the lap and hysteroscopy and (I assume) having to build yourself up to have those procedures done. May I ask, what do they do in a hysteroscopy? I have got to have the lap and a hysteroscopy but I have no idea what to expect with the hysteroscopy!

[MrsB1986 in reply to Bluerock7]

I was asleep for both procedures but from what i read its a long thin camera that goes up your vagina to look around the uterus , the only part of this that vaguely hurt was having a wee afterwards where it stung for about 24hours. I hope yours all goes well when its your time to have it and you get the answers you're looking for x