I’m looking for peoples advice / opinions on what they would do for themselves in my situation...
I’ve had 5 surgeries for endo over the years, 2 in the last 4 years with bowel involvement and multiple bowel shaves. I now need another operation as my symptoms are getting so bad again and more endo has been found on my bowel.
I don’t want to go down the shave route again and keep having to have surgery every 18 months and living with daily bowel pain etc and I’ve requested a more aggressive approach such as a disc resection or full segmental resection.
I got the impression my consultant did not want to go down the resection route since it can cause complications and affect fertility, bowel movements and possibility of a stoma etc. But I’m not sure I can keep dealing with this?
I’ve researched resections and read that recurrence of symptoms is a lot lower so in my mind this outweighs the risks and daily pain?
I’m looking for peoples advice and opinions on whether they would push for a resection or keep going down the shave route every few years? He has said he would be happy to do either but I got the impression he would prefer to just keep shaving.
Thanks for reading all of the above 🙈
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Sarah001
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Hi lovely, I hope you get the answers you need. I’m seeing a surgeon tomorrow to work out my options, because I have severe endo on my bowel. Were you offered any other treatment other than surgery?
We’re hoping to try for a baby this year so I don’t want to try any more hormonal therapies... I’ve also tried them all over the years and none have really helped with pain.Are you seeing a gynae or colorectal tomorrow? Hope it goes well.
Would you favour more aggressive surgery over more shaves that haven’t halted growth?
Awww good luck with trying hun. I had surgery many years ago, before starting IVF, but it wasn’t really explained what different surgeries were available to me. I’ll have to ask all the questions tomorrow. If I’m honest I’m scared of aggressive surgery. Were you told your endo could cause bowel blockage by getting bigger? X
See, my stools are loose too. My consultant scared me by talking about blockages down the line, but I need to find out what’s what. I had an in-depth 3D scan and the professor said it wouldn’t get any worse, so I don’t want to be scaremongered into surgery. I mainly get bowel pain and diarrhoea throughout my period and extremely painful ovulation, but can deal with, with painkillers. My pain threshold is very high apparently
I would seek another specialist but that's just my opinion you need someone putting your needs and wants first.multiple surgeries can cause more pain they don't always give you relief you may then have surgical adhesion pain you can't go on forever having surgery every 18 month no no no
There would be lots of questions I would be asking here like how will it impact fertility?wether he is skilled enough to do what you want bowl recession?if you do end up with stoma for how long?
Thank you, it would only affect my fertility if it went wrong and if there were complications.. he said complications happen in around 5% of people.
He’s one of the top surgeons in the UK and the colorectal surgeon seems very experienced so I trust them in that sense but I just don’t want to keep going through surgeries for bowel shaves every 18 months when it grows back... which it has done twice already.
And I completely agree with you in that by constantly having these surgeries I’m also increasing my risk of further adhesions and further pain where as if they just did one big surgery now it could negate the need for future surgery for years and therefore minimise the adhesion growth...
I just don’t know how forceful I should be in making my decision.. I understand they have to make you aware of complications but then that should also be balanced with giving long term symptom relief which at the moment I’m not having
They like to scare you with their statistics I've been there when I had my c section I read up my risks of vaginal birth are low and they encouraged a c section I then got complications from a c section which they practically forced me to do I was a 1% out of 1000 that got bladder damage from a c section if I had vaginal I might have been better off so I know what consultants are like when they are scared of statistics and want their own way my vaginal birth which I wanted was also 1% risk of complications.I would definitely stay head strong if you know what you want as they can be very encouraging to do things there way x
I had aggressive surgery in order to treat my Endometriosis! My first one! I had resection of the bowel... Well 2 weeks after surgery I found myself unable to stay awake... It was severe, severe, constipation! Since then I have had in excess of 20+ impactions! I would give anything for loose bowel movements! I now have even more adhesions around my bowel! So! Depends! I had to have a resection because my Fallopian tube was wrapped around it, suspending my bowel.... Is resection right for you? Only you can decide! It increases the risk of complications that can range from infection to death from sepsis! It can cause permanent bowel issues! Or you might get lucky and might cure you!
Personally I’d go with what your consultant suggests! Excision isn’t a cure! My Endo come straight back! Xx
Thank you, I had similar in my last surgery I’m that my right ovary was stuck to my bowel but luckily my surgeon did manage to separate it but then also shaved lots of endo from further down.
I guess I’m just hoping that trying something a bit more radical rather than shaving and leaving endo behind might offer some relief!
Hi there I'm sorry I have no suggestions for you but do have a couple questions if you don't mind my asking. How did you get diagnosed with bowel Endo? I have had several surgeries for Endo, most recently had my right tube and ovary removed because my ovary was fused to my pelvis with endometriosis in several other areas as well. I have a lot of pain all the time and a couple drs have thought maybe I have Endo on my bowels but say it could be clear so not obvious when do laparoscopic surgery? I guess that confuses me...any info you can give me. ????
Hi, It was picked up during a laparoscopy a few years ago. They generally check bowels, bladder, ureters, kidneys etc. And that’s how mine was picked up.
Could be tiny spots that have been missed maybe if your having pain?
What symptoms are you having?
For me I have constant pain “up my bum” which gets worse around ovulation / my period to the point I can’t even sit flat on my bum, painful bowel movements, blood occasionally, along with all the other “typical” endo symptoms.
So I've had 7 laparoscopic surgeries (always endometriosis), but there has never been any found on my bowels (almost everywhere else though). Along with the "regular" endo symptoms I have: sharp pain that goes from my bum straight up (stabbing), diarrhea one day then constipation, terrible bloating/inflammation of the abdomen (not related to food & been worked up by gastroenterologist), painful bowel movements (and pelvic pain with) and not sure if related but also have terrible upper right sided pain below and around the rib area that no one can seem to diagnose but it's constantly there and gets worse with activity. Like I said I know I have endometriosis, all of my drs are trying to talk me into a hysterectomy (and just had my right ovary and tube removed- worried I made the wrong call as I'm starting to have pains in the left ovary area and am worried it's back again.) Endometriosis seems to progress and return extremely fast for me for some reason, my last two surgeries were 10 months apart, and pain never really subsided. I am on the pill and take only active pills to avoid periods (my Obgyn's idea) but I still have pain all the time and terrible terrible fatigue. Just wondering if I could have it on/in the bowels as well and it has been missed????
We’re your surgeries with an endo specialist? If not then I’d maybe push to be referred to a BSGE centre?
It’s awful isn’t it.. my last surgery was only 12 months ago and it’s back again (picked up on ultrasound this time on my bowel) which is why I’m trying to push for a resection as clearly shaves aren’t working!
I have the same kidney area pain too under my ribs and no idea what it is... I have it when I’m not even ovulating or on my period too so no idea what’s causing it 🤷🏻♀️
Definitely push to see a BSGE if you aren’t, otherwise I don’t know what to suggest I’m afraid x
Hi, so I had surgery in December to remove severe endo, including a bowel resection. My op was long (8 hours) and I had 20cm of my bowel removed. I do have a temporary ileostomy. I was so worried about having a stoma, but I was so fed up with the pain. My thinking was I’d rather have it all removed rather than leaving some there and it grow straight back meaning more surgery. Whilst I’d rather not have it, the stoma is fine.
Thank you, this is where I’m at at the moment. I’m so sick of feeling like this that tbh I would take a temp stoma. I just don’t understand my surgeons logic that multiple surgeries every year is better than a single more radical surgery? The risks of repeated surgery are just as scary as the risks of a bowel resection so I just don’t understand!!
That is confusing. My surgeon did say to me that we are very cautious in the UK and that we wouldn’t even be having the conversation in Europe, it would just be done. Maybe it depends on where your endo is in your bowel, which makes it more risky? Mine started 10cm up. Sorry you’re having to battle for this!
That could be it as mine is quite low down on my rectum but even with that, all the studies I’ve read state that after multiple, failed, conservative surgeries a disc resection or full segmental should be the next step. And low anterior resections can be performed successfully without complications...
Every shave I’ve had so far they’ve told me that disease has been left behind so they know they aren’t ”helping” in that sense.. but maybe you’re right and that it’s because it’s located lower down?!
I have a consult Thursday so will ask. That’s very interesting about Europe though, thank you. Makes sense given a lot of the studies I’be read seem to be EU not UK! Xx
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