Hoping someone has experienced similar

[Possibleendo2022]

I was diagnosed with endometriosis following a laparoscopy in 2022.

Both adnexa adherent into the POD which was partly obliterated. Rectum also pulled up against uterosacral. Probable right endometrioma.

Essentially my tubes, bowel and ovaries all stuck together and into the pouch of Douglas. They did not do excision at the time as the consultant wasn’t confident he could get it all due to the impact on the bowel.

Since this time my symptoms have got worse. Bleeding during bowel movement, incredible lower back pain, pain down my legs, pain during sex. I recently had an MRI in order for them to plan surgery and in addition to this I have now been told they would like a CT scan of my kidneys before my next appointment. They haven’t told me what if anything they have seen on the MRI that has also made them want the CT.

Has anyone experienced this and could help me understand what they may need to see/know more about my kidneys for at this stage? Thanks to anyone who can offer any insight.

[Moon_maiden]

Hi

Give the secretary a call or email and ask, I find email easier when I have a question. Might take a few days to get a response.

I can’t help with why they want a CT on top of MRI though, might give a different angle.

[Possibleendo2022 in reply to Moon_maiden]

Thanks for replying. I don’t actually have a named consultant at this stage that I can just contact their secretary but I have my appointment soon so will hopefully have a better understanding then x

[Moon_maiden in reply to Possibleendo2022]

If you did want to find out the appointment team can tell you. With your history it should definitely be an Endo interested consultant team. I saw fellow/registrar at appointment the other week but he knew what he was talking about.

Keep us posted as to how you get on

[Possibleendo2022 in reply to Moon_maiden]

Sorry I didn’t get alerted to this so have only just seen it. My appointment letter for the CT arrived and it’s for a urinary tract CT with contrast. Will definitely be back with an update

[Moon_maiden in reply to Possibleendo2022]

🤞 it only shows something easy to deal with.

Definitely keep us posted 🙂

Hope weekend has been ok

[Bakewey]

it’s standard practice, if they have concerns about endo the doctor will want to know exactly what they are dealing with so that surgery can be arranged with the appropriate professionals in situ.

The worst thing about MDT is that you have to meet with all those involved and they will all tell you worst case scenario! I nearly backed out of my surgery. It was daunting.

Fingers crossed you get the support you need soon.

[Possibleendo2022 in reply to Bakewey]

I appreciate the insight. Yes they have already started prepping me for worst case scenarios and have mentioned hysterectomy although I am hoping it has not progressed that far.

I think I am more concerned at the speed of my MRI results, how quickly they have been discussed and how quickly it has been decided that they also want the CT. I have spent a long time with no answers about the surgery and now it seems things have really sped up which has me worried.

[Possibleendo2022]

I wanted to update for anyone here who may be going through something similar but also as I am once again looking for advice from anyone who may also have gone through this. Thank you to anyone who responded the last time.

It has now been confirmed as stage 4 deep infiltrating endometriosis with my entire rectovaginal area impacted. I am awaiting a surgery date however also need to meet with the colorectal team to understand what they will be doing with my bowel as it will be a multi disciplinary surgical team involved.

They now want to put me on zoladex prior to the surgery. I presume this is normal protocol?

I am 41, I have never been pregnant and I am concerned about how this may impact my chances of having a family in the future.

I am struggling with anger as I was diagnosed with 2022 with stage 3 (no excision at all in this laparoscopy) and told to present with pregnancy in 6 months or refer for surgical management. And now it’s 2 and a half years later, I am 2 and an half years older and it only seems to be urgent for them now. I was discharged back then and believe I should have been kept under monitoring due to my staging, age and fertility.

Would like to hear about anyone’s experience with zoladex and then subsequent fertility, recovery times for a surgery like this and also in making a complaint about my discharge from care in 2022.

Thank you!