Endometriosis UK
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Has anyone had an endometriosis specialist successfully treat superficial endometriosis on the bowel?

Hi ladies.

I need success stories of hope.

Background info; ttc 6 years 8 months I had 2 laparoscopys one last June by fertility specialist conceived but miscarried at 4 and a half weeks one last month by general gynaecologist. Endometriosis was found on pod and rectum both times.

I saw the endo nurse and consultant today; the outcome of the appointment is another laparoscopy and from what he’s been told he believes it to be superficial and is surprised by my symptoms especially the bleeding from backside as that suggests deep endo but he is assuming it’s because there is so much? He will also make 4 incisions as opposed to the other laps with I had 3 incisions. How many do most of you ladies have for a lap? Is it normal to vary?

I was also told if it was too deep that I’d be referred to a colorectal specialist for another lap.

I was told the list was 20-30 weeks but had a pre op today as I live 50 miles from hospital.

Can superficial endometriosis really cause the amount of pain and symptoms I’ve got?

I really like the nurse and consultant; thought they were great. And the nurse has given me her contact details to contact anytime I’m worried.

If anyone has gone through similar love to hear from you. xoxo

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Hello Jess,

I had superficial endo on my bowel as well. I was dx'd with stage IV endo. The gyn who did my surgery removed it, however, I live in the states, so how doctors can practice may vary. However, whether superficial or not, endo can still cause a tremendous amount of pain. You could be someone with a little to moderate amount and be doubled over, or have a tremendous amount and not know it. Much of it has to do with endo implants and the nerves involved where they are. I am waiting a month to get my surgery here in the states and I thought that was unreasonable, but after reading you have to wait 20-30 weeks, I'll not think a month is unreasonable again. Best of luck to you!

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Thank you.

I’m not sure how US differs but in the UK there are only 17 endometriosis BSGE centres; they only will deal with complex endo. I think that’s how delays occurs.

Good luck for your surgery hope it goes well xoxo

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Hi Jess,

Endo specialists may be more prevalent in the states, but it is still difficult to come by them. Most gyn's in the USA don't do these types of surgeries (mostly c-sections, D&C's, terminations and tubal ligations), so they have insufficient experience. It is necessary to find a physician who really specializes in this disease. Also, the new trend here is to first try BCP's for 2-3 months before private insurance will pay for surgery! I've am having to wait for surgery #3 for 6 weeks. I had a 20+ year career in medicine and have background enough to speculate that sometimes doctors have to modify surgeries to reach structures or go in the body a certain way. We're all so different. I had an unusual hernia repair several years ago. Most doctors were surprised how it was done, but it was not totally unheard of to do it that way. It was just not the usual method, and I recovered very nicely. So maybe 4 incisions is the way your surgeon feels is the best way to go. I wish you the very best, and am sure that you will come out on the other side of this feeling much better. With much kindness! :)

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Have they done any scans (MRI/ CT)? Might be worthwhile asking if it would be helpful? I think they can usually use the scans to help indentify bowel endo (although it’s never that easy). I’m under a specialist centre (uk) and it’s possible it could be on my bowel so I’ve had an MRI and then dependant on the outcome I will either have a lap or if it’s appears too much on the bowel, will have lap with colorectal (so either way they hope to only have to do the minimal surgery). However if it’s on the bowel it will be a super long wait 😩 Good luck x

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Thank you.

No they haven’t offered an MRI; they are going on what was seen during my last laparoscopy ( I’ve had 2 so far) no decent photos were available so it’s quite tricky for them to assess it. On what he’s been told he is confident he can treat all the endo; I just hope it isn’t deep as that means another lap; my bleeding from backside points towards that. 😱 they think there is a lot but only superficial and I hope they are right.

When do you hear your results from the MRI? Good luck. I didn’t know endo was detectable via an MRI scan. xoxo

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4 incision sites is standard for excision by an endo specialist, at least in my experience (in the UK). Best wishes x

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Ok update to my previous post — I just attended pre-assessment today for my second lap excision and the nurse was surprised to hear there would be 4 incisions. So maybe it’s not the most common number, but in any case if they’re looking at the rectal area they need that lower incision site for access. x

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Thank you for updating.

My fertility specialist and general gynae only used 3 incisions to treat endo from pod and left endo on my rectum. Maybe they need more access for endo on rectum. xoxo

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hi. Hope you found the appointment helpful, did you feel they understood your symptoms? My is all over my bowel but they can't operate on it, I had clear MRI scans so they don't always help. The bsge specialist couldn't understand why such extensive endometriosis and a full frozen pelvis didn't flag up anything on the MRI scan he said its why a lap is really the only reliable thing to do at the moment. My first lap was meant to be three incisions for removing my appendicitis. The specialist did 4 and I had a drain in so 5 but they healed well and I'm not a bikini kind of girl anyway! For pain have you seen the pain team? They got me through to my second operation, I couldn't work but I could did have some better days. Xx

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They were very supportive and the nurse seemed un phased by some of my more shocking symptoms!

My 2 laps were done by my fertility specialist and then a general gynaecologist and they both used 3 incisions.

I haven’t been referred to the pain team. Perhaps they don’t think it’s that bad?

The wait has upset me ; I’ve emailed them to see if we can start trying again I’m not sure I want to put it on hold for that long?.

Do you still get the pain? And how do you manage it? xoxo

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I had a lap which removed adhesions from my bowel as well as endo. I had an incision below and into my belly button, one on each hip and one in the centre bikini line. I used cocoa butter on them afterwards and now I struggle to find them, they are very fine faint silver lines no thicker than a pencil line. The belly button one did destroy my lower navel piercing site, though.

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