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Endometriosis UK
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Can an MRI scan indicate the severity of endometriosis on the rectum?

Hi ladies.

Sorry to post again!

I have known endometriosis on my rectum and so called “ superficial “ according to a general gynaecologist.

I saw the endo specialist who was surprised by my symptoms as they suggest “deep endo” but agreed to do a lap on his own as the report says only superficial endo. If it is found to be deep I’ll need another lap. I’m also TTC.

My symptoms have got worse and I’m worried my endo is much worse than the medics are saying it is.

I don’t want to have two surgeries when I could have one and get it all over with. Ive has two laps and never felt relief from them. And I don’t want to be left again with pain & symptoms to “ deal” with till another op bearing in mind this hospital waiting list is 30/35 weeks 🤦🏽‍♀️ and I’m 37 this year so not getting younger!

Would endo on an MRI show on the rectum?

I am thinking of asking the endo nurse of doing one when I email the nurse over symptoms.

Be interested in hearing others experience! xoxo

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Big hugs. I uad an rv nodule. My surgeon ordered a mri and us before planning my surgery. The nodule was thought to be 2.5cm.

When I went under the nodule. Was significantly bigger than the scan showed and actually around 3.5cm and had damaged my vagina extensively so i had to have a section of that removed.

So mri scans dont always show everything i guess. If it were me I'd want the bsge endo specialist doing it not the fertility specialist.

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Thank you for sharing your story, It’s interesting getting opinions I don’t want to have the op and them to see it’s mucn worse and then having to have more surgery.

The lap will be done by an endo BSGE registered consultant. He does operate with a colorectal specialist but as they are saying it is just superficial endo he is confident he can do this as day surgery on his own. Although he says my symptoms suggest deep endo and if that’s the case I’ll have to have more surgery with more waiting around. It’s hard. I worry because I feel it is much worse than he thinks it is..,

My first lap was done by my fertility doctor and as it re grew after my miscarriage had my second lap done by a general gynaecologist. Both times it was removed from POD but left on rectum and now it’s all over my rectum I really hope it is just superficial. 🤞🏻xoxo

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That's very much the situation I was in at my first diagnostic lap which I'd wanted to be 'see and treat' , except I'd not had the prior surgeries that you have. The diarrhoea thing is very indicative of rv endo. Its mentioned in Redwines endopaedia as charactistic.

Its great you're with bsge endo accredited surgeon now, but a terrible shame you are in the predicament that they were set up to try to prevent.

Has he seen still photos from your earlier laps that make him say he thinks it is superficial?

Do you feel you have been able to properly raise your concern about risk of an extra surgery given your history? Eg an increased risk of adhesive scarring or nerve damage adding to your pain? Did he give you a probability of it being superficial? Did you get to describe all the symptoms that have got you worried? If not then can you perhaps contact his secretary and raise these things that are worrying you so that your concerns can be properly taken into account?

Straight out of my first lap I was told it was deep and I was looking at more surgery but that he'd treated my ovaries. I'd just not understood about the deep and superficial distinction back then and needing the cr surgeon. As it was it took him a good 9 months to talk me into more surgery so I really feel for you. I would not want to face 2 if i could have 1.

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Thank you for such a supportive and helpful reply.

Yes he is aware of all the symptoms; he himself indicated my symptoms pointed towards “ deep endo”. Unfortunately the photos were not of good enough quality to send over so he is to go with the gynaes report who may have missed some. The report indicated “superficial endo “ but very symptomatic endo with lots of rectal symptoms.

My symptoms are getting progressively a lot worse and I’m sure the endo is a lot worse than he thinks it is. I have raised my more recent symptoms to my endo nurse and told her I cannot cope with them and cannot live like this. She isn’t back in the office until Wednesday. I hope she push the date forwards; currently I have a 30/35 week wait for surgery which is ridiculous.

The problem with my endo is it tends to recur very quickly; initially medics were dismissive of the notion it had grown back so quickly; even my fertility specialist was shocked it had and he’s been very good and was the one who referred me to a endometriosis specialist.

I might suggest the possibility of an MRI scan to nurse seeing as my symptoms are getting so much worse xoxo

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What a shame about the photos. I would definitely ask about the mri and your new symptoms, and how you feel about 2 ops. But you are in good hands now from the sounds of it and hopefully will be closely monitored.

From what I'd read is unusual for it to be so aggressive but there are definitely cases of it being like that, sometimes even after hysterectomy. And anyway you never did have it all excised in the first place which you would hope might have slowed its return.

I had my 10 month scan yesterday and am just praying mine hasnt come back.

Take care and let us know how you go xxxx

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Thank you and good luck for your results hope you are free of endo! 👍 and like wise let us know how you get on xoxo

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Yes it does but obviously looking properly with a camera will identify it more clearly x

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Will send you a PM..

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Hi

I can only comment from my experience in which mri showed only a possibility of endo in rectum.. I had to go for sigmoidoscopy to be sure and then they recommended CT scan to establish how far into the mucosa of the rectum it goes.

Its my understanding that they cant always see it on mri, so it may be worth pushing for a sigmoidoscopy.

I hope u find your answers soon xx

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Thank you for the advice.

I know I have endometriosis all over my rectum as it showed on my second lap but as it was just a general gynaecologist it had to be left; I’m now under a endometriosis specialist. My symptoms suggest deep endo according to the endometriosis specialist but as the report by the gynaecologist says superficial endo. I’m worried the gynae may have missed some; I don’t want to have 2 ops as opposed to just 1. If it’s deep he can’t treat it only with a colorectal surgeon. I hoped there might be a way to clarify it before proceeding to the lap. I’m probably clutching at straws xoxo

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