Confirmed diagnosis and bladder Endo.

[Adoradearheart]

Hey ladies,

Had my lap today, endometriosis was found in two places. To the front left of my womb, which was burnt off, and on my bladder, which was left as it could put a hole in my bladder. I was then told to pick pull, coil or prostap- but it’s a big decision so I left to think about it rather than let the anaesthetic talk.

So I’m going to go back to my Gp and ask for an urgent referral to a specialist as it is on my bladder. But I have a few questions, I was hoping you could help.

As it’s on my bladder does that automatically make it stage 3? The information on that is quite confusing.

Should I automatically be referred to a specialist too, due to the location, as per nice guidelines? (They say deep Endo on bladder etc but I’ve no clue how deep!)

My surgeon dismissed a lot of my symptoms only to come back after and say oops yes that could be the Endo causing that! So I don’t want to stay with him at all, it wasn’t a comfortable meeting this morning. Bladder was the last place I was expected too, so I’ve done like no research on it!

Thank you as always ladies 💕

[asoullessstatic]

The staging system for endo is pretty bad which ever system you use. However it does sound like stage 3, it depends on how deep the endometriosis has penetrated the tissue, if it’s more than 5mm then its considered severe (stage 4), if not, then its moderate (stage 3). Know that the staging system for endo does not correlate well with symptoms, or pain levels, and is in face pretty awful way of staging it, as it relies purely on the pathology, not symptoms. Bladder is a pretty normal site for endometriosis to be found on as its close to the womb.

If you are uncomfortable with the surgeon, you have the right to ask to see someone else, ask for a referral to your nearest BSGE endo center, bsge.org.uk/centre/ and make it clear this is the only option you’re willing to take. These centers are accredited and have demonstrated advanced skills for endometriosis surgery and care, the downside is, some of the centers are in very high demand so you may be in for a long wait to see someone.

[Adoradearheart in reply to asoullessstatic]

Thank you so much for your reply, I couldn’t make head nor tail of the staging and each thing I read said something different so I didn’t want to start calling it wrongly.

I’ve now got a referral to pinderfields in its way, which is a bsge centre. My main pain, in my right groin, is still lingering. I know it could be healing but they only removed some from the left side of my womb, so feel like some may have been missed too! I just want to get as much gone as possible, then go hormonal

[asoullessstatic in reply to Adoradearheart]

The classification systems for Endo are just a mess, what we really need is a new system, however developing one that is useful to both doctors, surgeons and patients is really damn hard.

I’ve not had my lap yet (I’m waiting on mine but hell they could see it on the MRI so I think we’re just going direct to excision surgery rather than a diagnostic lap), but from what I’ve heard about people it can take a week or two to start to feel like you’ve recovering. Good luck with it all, remember we’re all here for each other and we’re all in this together!