Endo Advice Please

[Chil616]

I'm feeling quite lost lately and not sure what I'm really hoping for posting this but please read if you can and if you've been in a similar position then please let me know any advice 💛 sorry for how long this post is.

So I was diagnosed with endo 9 years ago via laparoscopy where they excised areas of endo, adhesions and untwisted/unstuck my left ovary (which is what prompted urgent surgery when it showed up on an ultrasound). 5 years later I had a second laparoscopy which was also prompted due to my left ovary showing again as twisted and stuck on an ultrasound. So the adhesions where removed but no endometriosis was found or removed during the second surgery however a peice of fibro fatty tissue was removed along with an ovarian cyst.

Now I had another ultrasound in November last year because of increasing and worsening symptoms but he said he couldn't see the left ovary at all because it was behind the bowel. He said he was happy to go ahead with another laparoscopy but wasn't overly concerned so due to other health issues I decided to hold off on another surgery which was a terrible idea as now my symptoms are even worse and I'm being referred back to see the gynae again.

I suppose I'm just more worried incase they don't find anything during the next laparoscopy because at least if they do find something then it will explain my symptoms and I won't feel its all just in my head and like I'm exaggerating it all.

So my question is has anyone else had endo removed then had a surgery where no endo was found and then went for a subsequent surgery where it was found again? I'm thinking after 9 years it may have come back even if at the 5 year mark it didn't show? I'm also worried that if the ovary was hiding behind the bowel on the scan that it may be stuck to it with adhesions (as its happened twice before but stuck the the womb).

Thank you for reading my really long post and like I say I'm really too sure what I'm hoping from this post but maybe some reassurance or something please 💛 x

[Adventure101]

Hi sorry to hear you are going through this.Was your surgery where they didn’t find any endo done by a specialist? I have had a similar thing happen had surgery 10 years ago where they found endo then 2 years ago got rushed to hospital and had 2 large cysts that where pushing on my kidney so had to have the cysts removed as a emergency surgery and the gynae said there was no endo had a really rough recovery and ended up back in surgery 3 months after that surgery but with a specialist and it was everywhere in my abdomen including on my bowels and bladder. A lot of gynaecologist arnt trained to know what endo looks like.

[Chil616 in reply to Adventure101]

Hi thank you for your message. I've been really lucky tbh and managed to privately through health insurance (after many years of getting nowhere on the nhs) to see the same gynae who specialises in endo since I was first diagnosed and he's been really understanding of my symptoms etc and I've never had any reason to doubt or ask for a second opinion. But I've also only really mentioned pain in the same areas to him so I'm wondering if he's not really "looked around" and only stayed near the ovarys/womb when looking for endo last time. I've had lots of other pain in other areas but never really connected them before and many tests later for other things nothing else has shown which is another reason I'm thinking it may all be connected to Endo in different areas. I suppose the only way to know is go ahead with the laparoscopy but I'm more worried about them not finding anything, at least if they do find something then I feel like it at least explains everything that I'm feeling.

So sorry you had to go through that as well, so much trauma in a short space of time. I also find it shocking that as the 2nd most common gynaecological condition most gynaes don't even know what to look for 🤦‍♀️ and which left untreated can cause serious damage in a lot of cases.

I've been sent to a&e before by the gp due to cysts on my ovaries about 2 years ago but they just said oh yeh it's normal and nothing we can do. And that was it. So since then I've felt like a bit of a time waster and keep putting everything off. Thank you for your message though I really appreciate it x

[Dogmad6]

The only way they can be sure that tissue removed ISN'T endometriosis is to get the histology. After one of my lengthy operations, I was told there was tissue that 'didn't look quite right' and a lot of excision and revision of scars was done but I was told it wasn't endometriosis. It was! The lab analysis proved it. It can be all different colours and appearances. If you think it's Endometriosis it almost certainly is. XX

[gettingusedtoendo in reply to Dogmad6]

What else could such tissue be? Thanks

[Dogmad6 in reply to gettingusedtoendo]

I also had tissue that was said to be severe fibrosis and scarring which endometriosis causes. This tissue is also painful.

[Chil616 in reply to Dogmad6]

Hi thank you for your message, yes they sent the fibro fatty tissue they excised from the second surgery off and the histology came back as not being endometriosis. The first surgery histology came back as being positive it was Endometriosis . I'm more worried now that after last time only finding one peice of tissue that came back as not being endo that this next surgery will come back the same and I'll have to explanation for the symptoms I'm experiencing 😩 x

[Dogmad6 in reply to Chil616]

I think when you have had severe endometriosis you've always got it whether they find it or not. It can be just microscopic and in various places. At least that is what a top specialist told me. It's very difficult to deal with mentally unfortunately. XX