Endometriosis Staging

[Ps-endo]

Hi!

I was wondering if anyone can help with explaining the staging of endo please?

I had an mri which they said showed suspected deep infiltrating endo on my uterosacral ligaments. I had a lap 2 weeks ago where they did find it all over my uterosacral ligaments, my left and right abdominal wall and pararectal fossa. I’m wondering is this classed as deep infiltrating because of location (as they suspected from MRI) or not and how does the staging work.

I’ve not been told by my surgeon/consultant regarding staging and I don’t have an app until 5th December so just wondered if anyone could give me any clarity here.

Thank you!

[MangoStickyRice]

Following as interested in the whole endo and MRI combo. I had a lap following 2.5 years of pain - all pointing towards endo. Lap found nothing. Referred back to GP. I asked for further imaging (MRI) and she told me an MRI wouldn't be useful to view what's going on with the pain - the complete opposite to the research and posts that I have read! I'm so confused

[Ps-endo in reply to MangoStickyRice]

I had a lap with general gynaecology 2 years ago and they found “nothing” except a suspicious area, but they didn’t diagnose me. I pushed for further investigations, had an MRI which showed the deep infiltrating endo in one area, had another laparoscopy with an endometriosis specialist on the nhs and they found it in a few different areas! Did you have your lap with general gynae? Hope you get some answers soon, keep pushing x

[MangoStickyRice in reply to Ps-endo]

Crikey. Mine was with a gynae consultant (private hospital but on the nhs). She had an interest in Endo but I don’t think she specialised in that specifically. I’m glad that you were able to find out what was wrong. When they told me they found nothing it was so much more heartbreaking than them saying they had found something - like it was all for nothing, 2.5yrs and back to the drawing board.

I think I’m going to push for an MRI - can they actually refuse to give me one?

[Ps-endo]

I 100% understand where you’re coming from I felt exactly the same. I’ve been back and forth fighting for answers for 12 years, and only got my diagnosis 2 weeks ago. It was bittersweet this time around, I finally had answers which was a relief.

I’m not sure if they can refuse as it sounds like it would be beneficial to you, but when I was refused investigations or treatments, I politely asked them to write on my medical record that they were refusing. Generally, they don’t like to do that to protect their own backs, but you’re entitled to ask for it on your notes. I’d keep pushing, you know your body best and in my case for example, I was correct, I just had to keep fighting.

[MangoStickyRice]

Thank you. I’m seeing the GP for an assessment next week - she said she won’t be checking ‘inside’ due to the recent lap but wants to ‘know where the pain is’ - I’ll turn up, point to the pain and I’ll ask her to note down that she won’t send me for further imaging. I’m so happy for you that you got your diagnosis (not happy you have it but happy you know). 12 years of no answers must have felt like a lifetime - the constant reminder that somethings wrong and not being in control. That’s the part that eats me up inside, not being able to plan the next part of my life. I would love to have a baby and now my husband and I are starting to talk about it but we are both holding back from the full talk because of my symptoms. I don’t want us to decide to have children and then have the heartbreak realising that something will stop us from that. Plus I feel it would be irresponsible to try to conceive when I’m already going through this pain. Thank you for your advise and sharing your story - it’s given me hope and courage to keep fighting for what I know I need.

[Ps-endo]

Thank you for sharing that with me, it helps to know we’re not alone doesn’t it? As awful as it is, it helps having others who have or are going through the same thing. The hardest thing for me I found was advocating for myself, you automatically trust doctors etc to do what’s best but turns out you know your body best so keep that in mind. Good luck and remember you’re not alone x