Hoping someone has experienced similar - Endometriosis UK

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Hoping someone has experienced similar

Possibleendo2022 profile image

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.

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Possibleendo2022
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5 Replies
Moon_maiden profile image
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 profile image
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 profile image
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

Bakewey profile image
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 profile image
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.

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