Endo with bowel complications advice please

[Scarlet105]

Hi I had a lap 5 months ago where endo was removed , back to consultant as already I'm experiencing pain back . The consultant now tells me she won't attempt any more surgery without a bowel surgeon present as the endo was sticking my uterus to my bowel I guess my question is if I leave this until menopause (I'm 42 now) how big a chance is there of irreaparable damage to my bowel . I've been offered zoladex so going to give this a try and looking into doing the endo diet , just so down thinking this is it and I just have to get used to daily pain

[Laurenxo_26]

I'm really sorry to hear about your pain and complications. You should talk with your doctor about whether waiting is going to permanently affect your bowels. If you don't mind, could you list your bowel symptoms? I think I may have bowel endo too. You shouldn't feel like you have to put up with this, keep pushing your doctor for a way to cope with pain and what your options are. I wish you the best for the future

Lauren

xx

[Scarlet105 in reply to Laurenxo_26]

Thank you It's silly I only thought of all these questions once out of the consultants lol I think making notes is important . I don't know if you can pin point if your bowel is involved by symptoms as reading at here they seem so widespread . I had pain on passing a bowel movement though I would get a real low ache over my pubic bone after I'd been , silly thing is I didn't even know I had endo I already had a coil in place so spent 5 months blaming that !!! Like I say i think keeping a pain diary and literally showing every doc you can and don't take no for an answer, really hope you get sorted it's such a depressing illness at times xxxx

[Laurenxo_26 in reply to Scarlet105]

I hope you get better soon! I agree notes are so important! I always leave and come up with new points or questions haah! The thing is, I get very bad rectal pain when I'm on my period (tmi sorry) and I have blood when I have a bowel movement but only when I get a period. Also I have constipation and then sometimes I will need to keep going. It's very strange and I just wondered if anyone with confirmed bowel endo had the same! I wish you all the best and luck in the world. When were you diagnosed with endo? I'm always here if you need someone to talk to because we all need to stick together xxxxx

[Scarlet105 in reply to Laurenxo_26]

Hi I think I've read on here that passing blood does suggest that the endometriosis is on your bowel ( thankfully I never had that ) it's just so frustrating getting to the bottom of it all ( no pun intended) lol . Basically the only way they can tell is going in with a lap so I'd push and push for that ..... I only recently got diagnosed but my gyne thinks my coil had been masking it ... Took a long time to get past my gp though she spent 3 months convinced I had pid ( kept testing for Sti) very frustrating ..... My only hope is that I'm near menopause at 42 lol ..... Always here too sometimes having a good rant just makes you feel better , and knowing your not alone xxx

[Loulou857 in reply to Laurenxo_26]

I have the same symptoms as you! I also experience sudden onset of such intense pain when I get the urge that it stops me in my tracks - I’ve been out shopping and have had to stop what I’m doing, grab hold of something until the pain passes, then I have to find a toilet immediately! Sorry to be so blunt but the pain feels like something sharp being shoved up my back passage with waves of sharp pain across my abdomen. I’m currently waiting to go for an MRI to confirm where exactly my endo is but they suspect it’s embedded in my bowel and have put me on the waiting list for surgery on my bowel.

[endoagony in reply to Laurenxo_26]

Hi Lauren, check out this page. The site has a lot of info on all kinds of endo.

endopaedia.info/subtype2.html

[Hidden]

Hello.

I got the results of an MRI last week. Amongst other things that were found, was that my right ovary is stuck to my womb and then these are stuck to my bowel.

I was told that it would be too difficult to operate as the bowel is easily damaged. So I'm trying other options first.

What i didn't ask was if the bowel had Endo nodiles on or if it was just adhesions.

So today I have written a letter to my specialist asking him that question and a few others.

I do get bouts of constipation and diarrhoea but I thankfully have no bleeding or pain when I have my bowels open.

Take care,

Barbara xx

[Scarlet105 in reply to Hidden]

Thanks for your reply , good idea I may write to my consultant just to get my facts 100% straight , I was quite shocked and didn't ask the question I should I thought once I'd had the lap I would be sorted

[Hidden in reply to Scarlet105]

I was exactly the same. As soon as I left the room I thought of so many questions to ask. Also am I at risk of my bowel becoming blocked?

I know it sounds daft but I was also aware of how long I was with the specialist and the fact there was other ladies to be seen.

I'm 43 and really hope my natural menopause isn't too long away!

Xx

[hayls]

Hi

Just wanted to reply with my experience as I recently had surgery for endo on my bowel. A lot of women with stage 4 endo will have some implications with their bowel, particularly uterus and/ovaries being stuck to their bowel and pulling the bowel up out of place. In the vast majority of cases the endo is on the outside of the bowel, but of course over time there is always the risk of developing a nodule that could then perforate the bowel. However you don't have to put up with it, there are endo specialist colorectal surgeons at every BSGE accredited endo centre and its very common for these surgeons to attend surgery alongside your gynae. I had my surgery with excellent endo Gynae and endo colorectal surgeon, my bowel and uterus were very stuck together in 2 placs and it was pulling my bowel up out of place which was causing bad pain during my period. My surgeons were hopeful that the endo was only on the outside of my bowel (as it is in most cases) and that they could then shave it off when unsticking it. Thankfully this was the case but when they separated and freed my bowel and uterus they discovered a huge nodule of deep infiltrating endo in my uteral ligaments which took a lot of work to remove and had been pushed up against my bowel. If I hadn't had the surgery it was only a matter of time before the nodule would have done more serious damage to my bowel. Obviously everyone is different and fingers crossed yours won't be that bad but I just wanted to let you know that this surgery is very common amongst women with severe endo. So far my surgery seems to have been a success (3 months post op now) and I am so glad I had it. Recovery was slow, needed 12 weeks off work, but am a lot happier having had the surgery. x

[endoagony]

I'm not understanding

1 - why a bowel surgeon was not contacted immediately??

2 - why on earth you were not told this earlier???!!!

I had a lap 6 weeks ago where they discovered that both tubes stuck to uterus, 1 also with bowel involvement & a lesion connecting uterus to rectum. Whilst in surgery the colorectal surgeon was called in to look. Surgery was stopped & I was told before I was even fully awake! Then when I did wake properly I asked to speak to gyno surgeon again cos had been half out of it still when told so wanted her to reiterate, & she sat with my partner & I & explained it all again & even showed pics!

I had a follow up appointment with her 4 weeks later where she again explained it all & drew me little diagrams & told me what needed to be done, my options etc

Had appointment with colorectal surgeon just last wed (15th Jan)

I am sorry I haven't answered your question...and I actually can't! I was/am just horrified & disgusted that you had not been told!!

I'd be looking into it further if I was you & demanding to know why it is that you had not been informed of this previously. You could have had the needed surgery and recovered/be recovering right now rather than putting up with all the nasty effects endo throws at us.

I sincerely hope you get whatever treatment is needed for your situation, in order to rid you of the pain.

Take care

[hayls in reply to endoagony]

Hi

I completely agree that she should have been told long before now, to find out 5 months later is really bad. However it is very unusual to have a colorectal surgeon attend mid way through surgery when not already planned unless its an emergency, and even then it would be tricky to find one available without doing it as a second op. Firstly, its unlikely the consent form would cover bowel surgery (to the extent of involving a colorectal surgeon anyway) as there are a lot of extra risks and considerations, even simple things like most women won't have had bowel prep for their lap, having had endo bowel surgery there is no way I would risk have bowel surgey without have had the appropriate bowel prep first. Also usually its really difficult to get the Gynae and endo specialised colorectal surgeon in the same place at the same time even when booking it weeks ahead. Obviously you were lucky that a colorectal surgeon happened to be free during your surgery and its worked out ok, but I would be livid if I woke up after surgery to find out that I had also had bowel surgery with no prior discussion about risks, options etc. Also I have learnt to be very particular about the surgeons I let near me (too many arent specialised enough in endo and often make it worse of do halve the job) so I would not be impressed with having a colorectal surgeon operate on me without me checking out in advance that they were a properly specialised endo colorectal surgeon and not a regular colorectal surgeon. I may be a bit particular and my ops are done privately rather than Nhs but it was a big decision to have my endo bowel op and I would not have been happy having the decision taken out of my hands and not knowing if the job had been done properly x

[endoagony in reply to hayls]

Hi

Late reply I know, sorry.

I didn't explain properly, sorry. I didn't have any bowel surgery at that time, the colorectal surgeon was called in to have a look, and he told them not to go any further with the surgery and it was stopped.

I totally agree with you on researching your surgeons prior to surgery, and I have also gone as a private paying patient to ensure I have the surgeons that know what they are doing and can trust.

[faffy73]

Hi! You will need to have both surgeons present if you have endo on your bowel, but before anything is planned you will probably need to have a flexible sigmoidoscopy (camera up the behind!!) to determine the extent of damage/obstruction. Only after both Gynae and colorectal team are clear on the problem will any surgery be discussed. I have severe endo and am waiting for my date for a total hysterectomy, including part of my vagina inside, removal of lesions and endo and will have the colon surgeon there to repair or resection two parts of my bowel, or one large section. I may have to have a stoma fitted as although they have images of the damage to my bowel, they do not know exactly how it can be treated until they are inside! One part of my bowel is stuck to my womb, which is also stuck to everything else! I have amazing surgeons and I feel I am getting the best advice. The only way of removing your bowel from your womb is by surgery and that must be with a colorectal surgeon because of any implications such as perforation to your bowel. I have a merina coil fitted to try and keep everything under control until surgery and I live on pain killers, I'm 40 and waiting until the menopause kicks in isn't an option! I have spent the past 3 years with so much pain and it just keeps getting worse, I really don't want to waste any more of my life because of endo. I have been told that I should get my life back after this major surgery by the end of this year. I can't wait and neither should you!! Hope this helps you in your decision making. Maybe you should see your consultant again to discuss what your options are and go with a list of question!! Good luck XX

[Scarlet105 in reply to faffy73]

Thank you all ladies .... I do feel very uninformed and I will be writing to the consultant this week to view all my concerns , my consultant did say going on the zoladex will be just buying me time until I'm in unbearable pain and can't take it any more then we would discuss the possibility of more surgery although this now scares me with the risks . I really hope the zoladex works and gives me some time to research and decide where I want to go next , hope all you ladies are on the mend , and thank you so much for taking the time to give me such useful advice xxxx

[Jolene2905]

Hi! I had an op mid November for the same thing, had endo on my bowel and it hurt constantly, I had the section of bowel removed by a bowel surgeon with endo doctor assisting, it is a big operation and is still a little painful now but only from the operation, my back doesn't hurt, it doesn't hurt any more when I go to the loo, they removed the bowel section as it was safer than laser surgery, as bizarre as it sounds it was the best op I have had, have had 4 previous laps and a separate op for removing cysts,

[Hidden]

Hi I'm 35 and just about to have bowel surgery with hysterectomy due to the damage endo has caused. I was told if I could cope wth the pain then to carry on and wait for surgery as it is I'm on prostrap injections but the finish in Nov (1yrs worth!) I couldn't go back to that pain or poor quality of life so I'm opting for surgery. It's not a cure but I'd rather have surgery and maybe side effects from that then go backwards to where I was last yr. it's all about what's best for you. But it's never a cure. Hope that helps

Emma

[Riajane in reply to Hidden]

I feel that this maybe the route for me too. Painkillers help but i don't know how much more I can take.

Wishing you luck in your surgery xx

[Riajane]

I had a lap in 2007 and was told that they treated most endo but there was some on my rectum that he didn't want to go near because he couldn't tell how much it had attached itself and it could need a specialist bowel surgeon. I also remember him saying a 27 year old wouldn't want a colostomy bag so let's hope that it will ease when you have children. Which it did, but after my daughter in 2011 it got seriously bad again.

I would get pain when passing a poo, it was like contraction pains, pain when I fart, pain when I sit down and when wee. Had another lap in 2015 but no endo on rectum was treated.

Wish I had pushed for further treatment back in 2007 because it's so bad now I'm on constant pain relief because it hurts to walk. Am waiting for a scan next week, as not seen as an emergency case. Sending you all hugs, we aren't alone in this xxx