Endo or not

[WanderingFox]

Approx April 2021 I took a dull pain my lower left hip. Didn’t think much of it until it became the hip and buttock area sometimes coming up the lower back and down the leg and wouldn’t go away no matter what.

Over the past two years this pain has never gone away and with it I get flare ups of extreme bloat, nausea and the pain also flares up and I have passed blood in my urine on and off multiple times.

They found a small kidney stone in May 2021 but I was told my symptoms weren’t the symptoms of a kidney stone and it was far too small to be doing anything anyway. In Dec 2022 I ended up A&E the flare up of bloat and pain etc was just too much. There was a lot of blood present in my urine. When they did a CT scan the next day it was clear so they decided I must’ve been passing my kidney stone. Since the pain didn’t fade I ended up off sick long term.

I had endo in the same area in 2016, at first I was told it was removed then I was told it was only burnt off at the tips. I got a MRI privately- clear. I got a laparoscopy privately- also clear.

I ended up in A&E a week after the lap with a flare up of bloat and pain and more blood in the urine. Bloods were clear so they said maybe I’d gastroenteritis as everything was clear. They did a chest X-Ray and it was clear which they said ruled out issues with the stomach.

I went to a physio who said he could see I was in pain and I definitely had siactica as a symptom but he had no idea what the cause was as he felt it wasn’t physio related so he discharged me.

I’m now getting stabbing pains in my upper left thigh at random that causes me to double over yelping in pain.

I’ve been back to A&E with another flare up after see my GP who said my tenderness in my torso alarmed her because I was clearly in so much pain. She also thinks it’s still endo and it’s just in a difficult place to find.

I’m due another CT scan as once again my bloods were clear and there’s blood in my urine no one can explain. A&E said if the scan is clear then maybe I’ve just bad IBS. I was told I’d IBS years ago but this bloat is nothing like that it’s much worse.

I’m off sick from work again. I’m always cancelling plans with people and I just have no life with this. The pain in my hip never goes away and no one has any interest in finding the cause of it or the siactica because they’ve become long term now.

Depending on the CT scan results I’ve to li k in my with GP again to see what avenue to pursue next.

Sorry for the long post. Just wondering has anyone else anything like this or had a laparoscopy come back clear but endo was then found?

[Starry1977]

I had awful left hip pain that also was in my groin and down my leg. Plus left sided back ache. I had a left sided endometrioma on my ovary plus they were stuck behind the rectum. It improved when I had it all unstuck and removed. I still get lower left back ache but I have it in my pouch of Douglas near rectosigmoid junction and lots of thick scarring so I think that causes some of my back issues.

[Cailleach]

The problem with the CT scan can be that if it is not done by someone with specific training in endo they may not find anything even if you do have it. I suggest you ask about this.

Not my personal experience, but I have read on here of people who had clear laps but were later found to have endo. Again it depends on the training and expertise of the person doing it.

As your GP seems to be supporting you in thinking this is endo, can you ask them to refer you to Gynae even if you have a negative scan? Also to discuss pain relief and try and find the best combination for you in the meantime.

I can really identify with your issues with frequent work absences/cancelling social activities. I don’t have any answer to it that other than to ensure that those closest to you understand that you still value them and and that you keep in contact even by messaging/Zoom/what ever suits you.

Xx