Constant flank/back pain…Please help!!

[Kk26]

Hi Everyone,

I'm not usually one for commenting on anything but feel like I just need a bit of advice and reassurance! I've just been diagnosed with Endo and it's hit me like a tonne of bricks!

My symptoms started, I thought, about 7 months ago with a sharp pain in my left flank area. Originally my GP felt it was a kidney infection/stone because I had a trace of blood in my urine but ultrasounds, a CT and cystoscopy showed all was fine. Then my CA 125 levels started to rise and I was in major panic mode!! I subsequently developed excruciating periods and that back/flank pain has been there constantly since then every day and I just can't take much more.

I had my first laparoscopy two weeks ago, knowing that if any endo was diagnosed and found it would be removed. It turned out to be stage IV, with a large endometrioma on my right ovary which was actually in the middle of my stomach area. The cyst was stuck to my bowel, which was stuck to the uterus, which was glued to the pelvic walls or something. The surgeon also performed a bilateral Ureterolysis - whatever that means!! With hindsight, my periods have been bad for a number of years but I just 'got used to it'.

I was so hoping that this back pain would have gone since having the lap but it's getting even worse. I was expecting pelvic and abdominal discomfort but that's not been too bad. The back/flank pain doesn't respond to pain relief and I just can't sleep because I can't get comfortable. It's a nightmare.

So, what I'm asking anybody is:

1) Has anyone else experienced this pain in their left side/lower back? I sometimes feel it in the corresponding area in the front too.

2) Could it be caused by the pressure of all those internal organs being stuck together?

3) Could it be bruising and inflammation now those organs are unstuck from each other? And how long does that last?

4) Apart from heat/painkillers, has anybody discovered any other ways to relieve this constant pain?

5) How long did people feel bruised/sore/in pain before feeling much better after their lap?

6) What else could be causing it?!

I have my follow up appointment this Saturday with the consultant so will be asking these questions, but I would be so grateful to hear of others' experiences and whether I should be asking him anything specific.

Please help! I don't know what to do.

xx

[Louoakley]

Really sorry to hear all if this it's awful thing to go through, I am too currently experiencing the exact same problems, terrible back pain in my buttocks too, had internal done and full pelvic exam, nothing came back but to be fair she even said she didn't know what she was looking for, currently waiting to see gyni next week for a lap hopefully? Pain is never ending every day for me 😢😢 hope you get some answers soon xxxxxxxxx

[CP17]

I have stage IV endo with a lot of my organs stuck together too, including my right ovary being attached to my ureter and an endometrioma in the ovary. My doctor has said that if I start to have severe back pain on that side I need to seek medical attention, because the cyst could be pushing my ureter shut and causing urine to back up into the kidney, which would be a serious problem.

Since it sounds like you have endo in your ureters as well, I would suggest that you contact your doctor and ask if this pain could be caused by a blocked ureter. I'm not a doctor and I have no idea if that's what's happening, but if it is you wouldn't want to put off getting it treated, to avoid kidney damage.

I had some of my organs unstuck and it took about a week for the pain to go away. I don't think that alone would account for you being in this severe pain 2 weeks later.

I hope you're able to get answers and good treatment for this. It sounds awful.