Peritoneal endometriosis?

[EndoRabbit08]

Has anybody been diagnosed with this?

What were your symptoms? Treatment?

This condition has been linked to iron overload so it would be interesting to see if anyone who has this also has problems with their iron levels.

Thanks xx

[Ethel-Cloud]

Hiya, I had a lap in December, and peritoneal pockets were found. I have recently had an MRI for further investigations but I'm awaiting results, it's been a very long process to get where I am today. I have had lots of iron problems in the past. Did you have a lap? And did they find pockets too? x

[EndoRabbit08 in reply to Ethel-Cloud]

Hello there.

Thanks for replying. No I haven't had any surgery because I've been advised against it due to so many adhesions/ scar tissue from so many C sections.

From symptoms and many ultrasounds I've been diagnosed with endometriosis, however I haven't really thought about I having peritoneal endometriosis until now because my symptoms are somehow morphing into that. Whereas before it was just around the scar, with 2 lumps. Now I'm finding that pain seems to be concentrated under the skin and all around my lower abdomen which suggests it may have either shown itself more over the years or has spread there!

I'm in the process of asking for another referral to do a MRI this time and see if can get a more accurate diagnoses this time. It's been a wild goose chase for 6 years now to be taken seriously.

But before I do that I've been referred to see a heamotologist in April because of my high serum iron levels. Hopefully he/she can get to the bottom of why my iron is so out of whack despite being on tablets for years. Hopefully they'll explain to me where endometriosis fits in the picture so I can decide what to do next.

I'm sorry for what you're going through, it's a terrible condition to have and even harder to come to terms with. 😟

Was your endometriosis always like that or did it spread? What symptoms do you get? What iron problems did you have? Because mine are just all over the place.

Hopefully I'll get some answers soon.

Thanks

Xx

[Ethel-Cloud in reply to EndoRabbit08]

I completely understand the wild goose chase! It is a constant battle to be taken seriously - which is ridiculous because they tell you they have a condition then don't do anything to help you deal with it. I have been having abdominal pain and terrible periods for years, things started getting worse. About 4 years ago I started feeling really unwell, I had all of the ovarian cancer symptoms. I went to the docs and she was brilliant and sent me for blood tests and an ultrasound. They came back with iron deficient anaemia, elevated CA125 and a large ovarian cyst. I was given a mirena coil which stopped my periods immediately and has helped tbf.

Things got worse again. I still have pain now not everyday but most (which varies short excrutiating stab, or dull throb and the dragging feeling) very low down on the right side of my abdomen (The peritoneal pockets are on the right hand side) I constantly feel sick have lower back pain, pain in my legs and bloat / swell up. I only had a lap in Dec 2021 and still waiting for proper results as the consultant hasn't been very good. I was then referred by 2 different docs for an MRI a couple of weeks ago. I have had to get PALS involved a few times to help with where the hell things are up to. As for the iron, they tested it on a 3 month basis. It was up and down and never got to the bottom of why. I also had vit D probs too.

So anyway I went for a mri 2 weeks ago. The lovely people who did my mri said this type of scan should give you a definitive answer for diagnosis. Even they couldn't believe how long it takes for endo to be diagnosed. Make sure you keep on at them for an MRI. Sorry for waffling, but it can feel like a lonely process. You deserve to feel well and get the support you need. I hope you get an mri - please keep me posted. x

[EndoRabbit08 in reply to Ethel-Cloud]

Thank you for kind words. I will do. 💐

Sorry for what you've gone through. It's an absolute headache isn't it?! Yes it's very ridiculous to try and be taken seriously. The amount of running around and explanations and questions I've had to endure are too little to be put into words.

I am pushing for that MRI although Gp's don't seem to have authority to order one ( so I've been told) and that only a consultant/ specialist can request one. But whenever I've seen a consultant/ specialist they've all said the same thing: You don't need an MRI because you've had enough ultrasounds. It's frustrating to say the least.

I'm confident that an MRI would show/ pick up more and diagnose better. Why I've been discouraged from having one in these last 6 years leaves me baffled.

Hopefully after I see a heamotologist next month, I'll decide more on which route I'll go down next. I'm pretty sure the clues are in my blood tests which hopefully will make sense soon! My GP called me 2 days ago and actually said he had ' NO CLUE' on what's going on with my iron levels. 😂. Bless him he's great, but I think he's just about given up on trying to make sense of it all. Not only does Endometriosis mess with our minds, it seems to be messing with doctors minds too. 😄

I too wish you health and happiness and every woman that's battling this terrible condition. ♥️

Keep me posted. Chat anytime.

Xx

[Lindle]

Peritoneal endo is mild and doesn't show on scans so I'm not sure how it has been diagnosed.