Endo on the bowel, Help please :(

[DeeDeeOT]

Hey Girls

Had my Lap and not good news!, I have endo on my bowel and my consultant is talking major surgery. Does anyone else have this problem or can anyone else give me any advice or help??.

Dee x

[oneill47]

how do this find this out as they have found a multiecystic lession on my pelvis and lower bowel its also displaceing my bowel so haveing proplems move

[DeeDeeOT in reply to oneill47]

I have a great Endo doctor where I live in Preston Lancashire, she specialises in complicated cases such as myself as it's attached to my bladder and section of bowel. She wen't in and did the Lap, removed all the endo she could find and when moving my bowel she found a white legion..(Endo). She even took pictures of the endo and section of bowel. I have awful trouble with my bowels.. so painful passing it!. The Doc says my bowel is sticking to parts of other bowel and other area and organs in my body. The bowel problem is the worst problem.. I really feel for us that have this... ;( xxx

[juljul in reply to DeeDeeOT]

Hi deedee, I live in the area and suspect endo on my bowel and bladder. Can you please pm me with the consultants name thank you....would really appreciate this as I have a lot of pain including anal pain. Thanks. xo

[stephchad]

I have it and was tol by my gyno that he would not operate. I know that it is VERY painful, and my sympathy is with you, but just count yourself lucky that he is prepared to operate. Unless he is talking hystorectomy, which was suggested to me, but dont do it and dont believe that it will help, because time and again, women who have had this, have still suffered with endometriosis after surgery. I bought two books written by Carolyn Levitt, one a receipe book for women with endometriosis and another on self healing. The diet and life changes detailed in the book seem a little extreme to some, but for stage four bowel sufferers, the difference that these changes make, make a HUGE difference to the symptoms. I also did a 28 day water fast which improved my symptoms a ton.

[DeeDeeOT in reply to stephchad]

Thats brill! I might take a look at this book :). I go back in 2 months to discuss my options with my doctor. I'm still young (29) and want children and my dooctor understands this. She has done an amazing job with my Lap scars and she really understands me. I am lucky to have her... I know and appreciate this!. I'm at uni studying so having a major Op isn't ideal but these things are sent to try us aren;t they?.

Thanks for the reply though, really appreciate it! xxxxx

[hogg_katie]

I've just had major surgery for endo bowel resection/repair - my endometriosis had formed a nodule in by bowel meaning hardly any food could pass through - causing me constant agony - it's only 10 weeks ago but so far feeling great - it was a laparotomy (open) but I think as long as you are fit and eat healthily the surgery is okay)

if you are on Twitter connect with thousands of other sufferers for support search #endosisters or go to this page twitter.com/EndoProblems/st...

[Welsh_chik]

I am on waiting list for surgery my specialist has told me that I deff have endo on the bowel but to what extent he is unsure, I haven't had a laparoscopy as the endo was found when I had a c-section. I know how u feel, it is so painful when I go to the toilet, he said that only 10% of cases of endo affect the bowel....have they discussed with u that u may have to have colostomy bag? My specialist mentioned this to me I'm so scared as I am only 24

[DeeDeeOT in reply to Welsh_chik]

OMG! no they havent... I couldn't cope with that!!. I go back to see my consultant on the 3rd March as i'm still recovering from surgery. It will defo be a question I will be askin as i'm only 29 :(. It's all so confusing and stressful! Thanks for giving me your advice, I really appreciate it. xx

[OosengaoO]

hi Dee

I had a bowel resection due to endo last november, it was done open surgery as they had other things to do, i was told by the bowel surgeon there was over 80% chance id wake up in the recovery room with a stoma bag, which i was terrified about as i was 34, not married and no kids, but due to the pain i was in it was a risk i needed to take as i was told it would only get worse not better, which everybody who has endo knows too well. Im happy to say i didnt need the stoma bag, there was enough bowel left to rejoin in. Im surprised your surgeon never mentioned this before, unless they plan to introduce you to the bowel surgeon before the operation.

Hope all goes well senga xx

[DeeDeeOT in reply to OosengaoO]

I'm glad you had a succesful outcome, the thought of having any type of bag outside the body fills me with utter embarrassment!. My boyfriend is a few years younger tham me and i wouldn't it to affect my relationship... It can't do much for your self esteem :(. How is everything now you have had the Op?, pain free??. xx

[OosengaoO]

bowel movement isnt nearly as sore as it was, which is a relief, they couldnt detach my bladder from my stomach wall was too risky, so that still causes pain, im 1 of those cases where no matter what they try i always end up back in pain, but thats not to say it will be the same with you.

When you go see your gynae just make a list of questions you need an answer to, they dont mind answering them when it comes to going into theatre. I was told it would be keyhole but ended up having open surgery, which i had asked about before my operation so it wasnt too much of a shock when i came round in the recovery room, i was kept in hospital for 5days. Just make sure you have plenty of pain relief at home when you get home.

if you need any advice on anything just message me its not a problem

senga xx

[DeeDeeOT in reply to OosengaoO]

Thanks Senga, you've been a great help!. At least I will be prepared now especially with all your suggestions and advice. I do hope one day that your pain free... miracles do happen!. I will wish this for both of us :-). xx

Dee x

[LeyaC]

Hi guys, I'm 16 and was diagnosed through a lap August 2012. My gynae didn't want to know and discharged me saying she didn't know enough about this so she can't do anything. I went to the doctors last week and she says the symptoms I've described sounds like it's moved onto the bowel I REALLY want children and the thought that it might have gone to fallopian tubes then to my bowel is soul destroying. I'm having to go to a specialist clinic in Kent which is really far from me, to see if they can help. I'm depressed and I'm so sad all the time, at the thought that my life has only just begun and already it's getting past coping point. I have an amazing, understanding fiancee who I am so appreciative of as not many guys are like him and he doesn't mind if we have to have children in the next few years but I just feel like my life is gone. I can't become a midwife anymore as I lost so much time off school I don't have GCSE's meaning the college won't let me go there to study so that upset me, I might not be able to have children and I want them so bad, it just feels like all the things I want are being taken away because of this stupid thing and no one is helping. I am always in pain and most of my time is spent in bed or walking around like I'm 100 years old. I know non of you are doctors who can tell me any good news but I guess I feel hearing someone who knows what its like say they know how I feel will be a HUGE help to me, just someone who understands me and how I feel 24/7. I've babbled and I'm sorry but I just needed to vent. Thanks for reading if you still are. Love and best wishes to every single girl out there who has this awful problem.

Leya xxx

[Hidden in reply to LeyaC]

Hi LeyaC

I'm so glad to hear that despite all the issues you have faced you have been diagnosed early as that can make so much difference. I have had endo since I was 14 and only got diagnosed 6 years ago when I was 30! You mentioned a specialist clinic in Kent, I live in Kent and have never heard or been referred could you send me some detials please? I have a good consultant but am at the stage that no treatment works anymore so I'm open to any kind of help.

Thanks and stay positive xx

[LeyaC]

also, make sure you know EXACTLY what is happening in your op, I wasn't told and I had invasive surgery without my permission so ask questions! That is a rule! I did but they didn't answer me correctly and they went against my wishes but I can't do anything about it because they covered their backsides so another rule is READ the small print, its your body at the end of the day, not a piece of furniture that doesn't matter if there's no guarantee! I hope to god that your op and everyone elses on here goes exactly to plan and it helps with the pain! Good luck to all,

Leya xxx

[DeeDeeOT in reply to LeyaC]

Leya! I find it so sad reading about you at such a young age and already suffering from Endo :-(. It's good to hear that you have such a supportive fiancee, defo a positive!. Has anyone every told you, you can't have children?. There is always a Chance so stay positive :-). I know having Endo makes you rush into decision because of the uncertaint! It's am awful pressure at my she 29 never mind. yours. Maybe in time, you could look into re taking your GCSE?. You could still be a midwife!! Never give up hope and never let endo best you. I'm studying full time st uni to be an Occupational Therapist and working too. It's hell and I want to quit but I just can't do it!

[DeeDeeOT in reply to DeeDeeOT]

Leya never apologise for rambling or moaning...were all human and it's natural natural. That is what this site is for!. Gaining support and advice from those that suffer with you

Dee xx

[Allieline]

Hi all,

Two years ago and I was told I really needed major surgery for my endometriosis as bowel and bladder are severely affected. I really didn't want this and had a mirena coil fitted, took six months of Prostap and was put on oral progesterone for a couple of months to control the heavy bleeding as well ( yes all at the same time). For a couple of weeks I was in agony, I couldn't believe how ill I felt but since then life has been good. I still have the coil, have light periods with some breakthrough bleeding but no pain. I know the Mirena coil doesn't work for everyone but for me it has been brilliant. I hope this helps, take care all x x

[DeeDeeOT in reply to Allieline]

That is positive!. It's truly lovely to hear that it's all working for you. Or at least your managing it?!. Thanks for sharing it's left me positive :-). Hope it last! Xx

Dee xx

[charlotteebscuba]

Hi! I was diagnosed with endo after having my baby girl. When I had my scans, they couldn't see my left ovary and my uterus was stuck at a funny angle. After I'd given birth, I had a lap and there were adhesions joining my left ovary and fallopian tube to my bowel, my bowel was stuck to my bladder and uterus and I had a cyst the size of a large orange yet I still managed to conceive xx

[oneill47 in reply to charlotteebscuba]

i have a multiecystic lession stuck to my pelvis and displaceing my lower bowel i have had my womb and oviers taken away except 3ins of the overis whitch is now went into a cyst plz message me how you got on with your prople as they want to operat on me and i am worried about it

[DeeDeeOT]

Blimey! what a mini miracle!! Just shows that anything is possible. :-). Congratulations and the safe arrival of your little girl anyway. Your positive news has made me smile :-). I do hope they manage/ed to help you with your Endo and cyst??

Dee xx

[Juleyanne]

I had a fallopian stump left from op to remove it which then went on to stick to my bowel, then had other tube removed which also stuck. They removed as much as possible due to close proximity to bowel but years later I still have pinching pain in right pelvis. Probably adhesions again. Now in menopause, I really don't know what to do next! My uterus apparently is ok after ultrasound but something is still not right. I do have Diverculitis Disease and small Hiatus Hernia and IBS so it is really really confusing as I get bowel pain and pinching and it hurts if bladder and bowel get too full.

I was offered radical Hysterectomy and bowel ressection but now uterus is ok, I am not sure they will now consider radical Hysto. Does anyone know or have experience of what the next step might be? Maybe, another lap. Has anyone had adhesion surgery for bowel pain in menopause?

[DeeDeeOT in reply to Juleyanne]

Hello there!!. Sounds awful and dealing with all those other conditions and complications. I to have another condition so I know how hard it is :-(. I don't have any experience as my diagnoses for Endo is new. I do hope that someone will be able to help you with your question. :-).

Good luck with finding the answers you need xx

Dee xx

[lm330]

hey DeeDee, I really feel your pain. I am also studying full time at uni and working part time. its really tough. youre right it is really good news that you have a diagnosis and can move forward. you are lucky to have a good gynae- hold onto to her xx

[DeeDeeOT in reply to lm330]

Thank you I will with both hands and feet LOL. What are you studying??. I often worry about how I will work Full time after Uni... I am determind to work full time and will do my best to fight!. Question is when enough, enough??. x Good luck with your studies though... High five to all the Endo students currently studying :-). xxx

Dee x

[lm330 in reply to DeeDeeOT]

im doing a PhD in Psychology. What about you? ya it is really hard to manage work, studies and endo. i feel like giving up on a daily basis, but although the workload is hard at least being a student is flexible. if you dont feel like you can get up in the morning then you can always work later. only problem is my job is linked to my studies and on the days i work there is no flexibility. so i often end up massively sleep deprived. lol. i really cant wait to finish. i feel like ive aged 20 years since starting PhD and getting diagnosed with endo (ironically both 3 years ago). I look at pics from when i started and cant believe im the same person lol.i would say its whats on the inside that counts, but by all accounts thats pretty skanky with endo and scarring lol. in all seriousness though i totally agree with you, all of us women with endo do such a great job of coping on a daily basis. i never told any of my friends about it because i already rant at my family and other half about it on a daily basis and now i have told them i have been surprised by how shocked peopel are that we cope with this on a daily basis. it just shows how strong we are. even though we may not always feel it. we really are. its so nice that everyone on this forum is so supportive too of one another. i never met anyone with endo before i came on here, so its nice to feel like im not that different after all (sorry ended up ranting there) lol xxx