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Endometriosis UK
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Is excision always 100%

Can I ask if any of you have had the endo excised before? By a ‘specialist ‘

I had 4 hour surgery 4 months ago and I was discovered that my endo had gone from stage one to stage 3/4 all over my pelvic walls rectovaginal and rectal involvement. I keep still getting pain, they did say that my uterus looked Adenomyosic like. Every time I need a bm I have period pain type pains and after I have been is the same. I’m under digestive diseases as well because I can’t actually have a bm without a suppository. Can anyone help?

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I had excision on my bowel but have a new Sharp rightside pain and bowel problems too, they’re adamant they got it all but they’re going to take another look.

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Hi Ash is it a look by laparoscopy again?

Good luck

Asking in case I need mine revisited 7 months post surgery x

Helly x

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Yeah they’re not sure if it’s more/missed endo or adhesions. I have also been rereffered to gastro

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I had an excision for stage 4 endometriosis last year by a specialist and it's back in full force. I presently have two 7cm cysts on both ovaries plus a subcutaneous lump above my belly button. Digestive issues abound as well.

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Hi if you don't mind me asking,could you feel the subcutaneous lump above your bellybutton before the lap?I have a lump in my bellybutton that I can feel protruding like a nodule.I haven't gotten a laparoscopy yet but my doctor suspects it's endometriosis there.I mainly get sensations or some stabbing pain around my period.I was advised to continue trying to conceive since it doesn't interfere much.I had a hsg test that showed blocked fallopian tubes at the distal end most likely due to adhesions.Was advised to go for IVF that we would have to pay privately.I feel bothered not knowing what the lump is

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I felt the lump after my 2nd lap. I didn't feel anything before any of the laps. It is exactly the way you described, almost protruding like a nodule.

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Thank you,I always worry once I conceive it will give me problems as my belly grows.Am hopeful though if it's endometriosis,it will grow dormant.

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What is that lump and how does it feel?

After the endo was reomoved from my bowel I had a lump there, the lump went after antibiotics (they expected inflamed tissue) but I eat sharp pains there (lower right side)

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It palpitates and feels like a bump you have on your arm (fleshy bit of body) when you have an injury without broken skin. It feels hard/stiff.

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Hi Holley,

I remember your profilw oic from a while back. Im glad you had a surgery and a surgeon who could give you the indicators as to stage/ where in your body it is.

Sorry you are still in pain.

Unfortunately for all of us, it seems to be able to return.

I have been very active on this site for a long time and it seems to me that ir returns to most ladies at some point.

There is a link that seems to ovaries/estrogen acting as a catalyst to its growth. They say also every surgery can create new adhesions as the scar tissue heals.

Its not a done deal even to have a htsterectomy.

Im 7 months past mine. I seem to have bouts of flare up and my bowel is seeming to be more and more involved as I get more flatulence now, stooling with flatulence and have had an odd dropping down inside me feeling with a bit of pain as my bowel empties (my bowel was extensively shaved of it...)

Im very regular and tend to go early doors, maybe 2 3 times in the mornings.

Ive just been noticing a link to flatulence sometimes giving me relief.

I think my surgery went an hour n a half over time as my hysterectomy was for Adenomyosis and Menhoragea yet I was covered in endometriosis the areas mentioned were pelvic wall, ovaries pinned, bowel pinned to pelvic wall.

My surgeon got a clean swoop as I was keeping nothing of my feminine parts, cervix gone too.

- As for Adenomyosis I can only tell you that I believe it for me was worse than the endometriosis. I say this because of the horrendous periods with clots (obviously this comes from the womb itself)...I have a time line from giving birth in 2014 July, my periods became so much more painful yet towards 2017 clotty, longer ovulation pain and symptoms like it was going to "drop" its menstrual load yet didn't, it could feel like that for 2 weeks toward the end, that bearing whole encompassing back ache, it wouldnt drop if I was dieting and always seemed to need this build up of calories before it flowed. I had no chance in this time to be a slim/moderate eater.

Backing up, in 2010 I had went to a&e with bladder pressure on waking in the mornings and pain on emptying, bladder pain with very frequent urination, almost urinary incontinence toward the end in 2017, I could actually wet myself in a deeper sleep having had alcohol.

Since hysterectomy my bladder moved in! I have complete control over it for the first time since my teens. My husband laps me at toilet breaks. Tight clothing like tights no longer hurt me to wear them. I can wear jeans comfortably. I could never wear shapewear due to pressure and pain.

My boggy bulky womb was saw on ultra sound (which is quite crap for finding adeno/endo in 2015 and on MRI in 2017, with my surgeon even pointing at said Adenomyosis on the scan for me.

He was an NHS worker, no reason to lie or insist he thought it was responsible for most of my pain. I also had bad neausea in the run up to period commencing, chronic fatigue too and foggy thinking.

He said the condition can be present before childbirth. My difficult labour didnt help my condition probably exacerbated it.

Im left with very little of my previous adeno/endo symptoms to my knowledge yet the back pain Im suffering moved post surgery to feelung like mechanical stiffness in my left upper quadrant/flank area and Im doing stretches given by a womans physio to help loosen/relax the area.

Ive no idea if the pain could be endometriosis on my pelvic ligaments or something? Or indeed growth again on my bowel?

Id wait 2 years here in Ireland on a lap should I get refferred today!

Have you tried the Zoladex option or those options to turn off the ovaries and starve off the endometriosis?

Ps even my surgeon said to me excision is never 100% as there is a risk of perforation of the organ if shaved too deep etc. The cekks are microscopic in places.

Personally - if microscopic and have a food source ie estrogen, this means there is surely chance here to build it back up again?

Sorry, I think we are all f $cked until tgey find a cure!

What treatment options are on your mind?

Good luck.

Helly.

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Hi, interested to read about excision. As a mature lady who has had hysterectomy many years ago I thought I was done with all this. Just had mri and waiting the results. My question is do you ever get rid of endo? Even going to BSGE centre I am still very apprehensive. Not sure whether to stay as I am and just cope with it all or my journey starts all over again. I have low back pain and sciatica. The pain never went away after hysterectomy. Any advice?? Consultation tomorrow. Thank you ladies. We are all at different stages of the beast. Wishing you all well. X

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