MRI follow up

[Lincoln67]

Hey,

I wrote recently about being scared for my follow up, I guess I worked myself up not knowing which was the best answer to see it or not to see it.

It was visible on my scan, they also suspect adenmyosis. It’s on my bowel and bladder. The specialist I seen today basically said he isn’t specialist enough to complete an operation and I’d need to be seen at an endo specialist centre as the operation would need further specialist.

has anyone had this? Does anyone have any experience of Bristol south mead?

Thanks so much

[CitizenErased]

Hey lovely!

Sorry to hear this, but glad you've got some answers at least.

I had my MRI follow-up yesterday too. I'm at a specialist centre (Colchester) and they're going to discuss my case with an MDT (multidisciplinary team) before putting me on the waiting list for surgery, since I have some adhesions on my bowel too. I expect this is what will be needed in your case too. Since your bladder and bowel are involved, they will probably want a bowel surgeon and a urologist present at the operation.

Hope you're feeling okay. I cried during my appointment!

[Lincoln67 in reply to CitizenErased]

I cried all through my appointment too. It’s such a strange feeling to be happy they can see something, because you’re almost happy you’re not well? But also, I don’t need to prove my pain anymore, it’s right there to see and I felt validated. It was a bizzare mix of emotions. I think I’d talked myself into what I would say/do if they said they could see nothing so I was a bit blindsided really lol

How are you feeling after having a night to sleep on it? It’s such a strange thing when no one else you know really understands. I feel really isolated!

[CitizenErased in reply to Lincoln67]

Bless ya! I know, it's so weird, isn't it? I was convinced they wouldn't find anything on my MRI too, and that I'd just go home and carry on with my life.

You're right, it is so isolating. Thank God for communities like this one! I feel a bit better having had a good night's sleep. And I spoke to my partner and my mum about everything, which really helped. I called the Endometriosis UK helpline as well, and spoke to a woman who has had multiple surgeries, and she made me feel so much better about the prospect of having the op. I figure that it can't be that bad an experience if people go back for multiple surgeries! And I'm being seen by a specialist team. I'm in good hands. And at the end of the day, the other treatment options aren't for me. I don't want something that's just going to mask the symptoms. I want to really know what's going on inside me before it potentially gets worse. I asked my doc what the chances were of things getting worse if I didn't get surgery. He said it's around 37% it will get worse, 17% it will get better, and the rest that it will stay the same. He also said he couldn't see any infiltration into the organs, but that that doesn't mean it's not there. That's what made up my mind. I'm not going to know for sure what's going on until they actually look in there!

So, I'm still scared. But I think the operation is best for me in the long run so that I know what I'm up against.

At least you have some info now! I hope you feel better soon and can start to make any decisions you have to make.

If you ever need someone to talk to, please do drop me a message! We're at very similar stages in this process, so if you ever want someone to talk or vent to, I'm here 😊 x