Has any one had problems with bowels - Endometriosis UK

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Has any one had problems with bowels

leannelouise profile image
27 Replies

Seen my consultant 2day 4 results following ultra scan she is sending me 4 a mri to see if its penentrated through the bowel before they operate if it has she said part of me bowel will be removed an I will have a bag (am 26) not thrilled wit that. In mean time while thays going through am having prostrab injections again. Any1 similar

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leannelouise profile image
leannelouise
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27 Replies
Tinkerjack1912 profile image
Tinkerjack1912

Hi I was diagnosed with endo on my rectum nearly four years ago, my gyne won't remove it unless it becomes really unbearable coz of the risk. If your unhappy with having it removed from your bowel tell your gyne it's your choice at the end of the day, take some time to weigh up the pros and cons. Hope it all works out for you.

Miwa profile image
Miwa

Hi,

My endo had penetrated through the bowel in two places, and I had it removed by my endo consultant. He said some won't remove it as they don't have the skills too. I didn't need a resection, which is why i did not end up with a bag. But now going to the toilet is a joy - no more crying in pain trying to empty my bowel, no running to the toilet when my bowel is full due to the sharp searing pain, as I need to empty it quickly.

xx

leannelouise profile image
leannelouise

O thata gud u didn need a bag i want to be pain free as much as possible I have 2 work 2 pay the bills so cant afford time of work so if it needs doin it needs doin they wudn put ur threw a operation if it wasnt required thats how I see it so if there sayin it then I need it. Hope ur well now x

persil profile image
persil

Hi Leannelouise

I would advise to consider every option sometimes surgery cures one ailment and creates another and in my experience doctors don't always get it right

Good luck hope you get on ok x

stevieflp profile image
stevieflp

Hi - if it is any comfort to you, I was under the top UK endo consultant surgeon. He told me that it is extremely rare for endo to actually penetrate the bowel wall. He generally gets the difficult cases and rarely sees this. More commonly it is endo attached to the outside of the bowel. He told me a resection is generally only necessary where it has actually penetrated right through. If it is on the outside a skilled surgeon can shave the endo off the outside, as was done in my case. I would check up on the credentials/skill and area of expertise of the surgeon that you are under to ensure they are best placed to deal with this. If in doubt, ask for a referral to an accredited endo centre if not already under one.

All best wishes x x

in reply to stevieflp

Did you have any bowel symptoms stevieflp?

My bowel is stuck to my ovary and womb. I do not have pain but do get alternating constipation and diarrhoea.

Barbara x

fibobs79 profile image
fibobs79 in reply to

I have this, I was hoping it was just me. Sometimes during my period it really hurts to go to the toilet and during ovulation it's painful and I am constantly running to the toilet. It's embarrassing. Booked for my first lap next month and very scared now.

stevieflp profile image
stevieflp

Hi yes, typical IBS symptoms which gradually progressed to feeling at times like I had been kicked by a horse, pain which would come on suddenly when sitting at my desk and would be painful to stand up straight when this hit. My GP initially sent me for a colonoscopy. This was clear except my bowel appeared to be kinked. Later investigations showed that I had stage iv endo with frozen pelvis and endo had completely stuck my bowel out of it's usual position, hence the problems. I also had obliteration of Pouch of douglas (recto/vaginal). As part of wider surgery I had the endo shaved off my bowel and have been good since. That was 3 years ago.

in reply to stevieflp

I've been sent away from the hospital and told to try the mirena again. But I'm really worried about the bowel side of things. Do you thing I should be asking for something more then the mirena?

I also have Endo in my POD, my uteral ligaments and a chocolate cyst. All of the above showed up on a recent MRI.

Barbara x

leannelouise profile image
leannelouise

I onli have one ovary other got took 2 years ago I alredi was tild about 5 years ago it was on me bowel me womb bowel an ovary r all stuck together. I started with bleeding in me bowels about year ago then mucus sorry 4 details but I cant pass wind I have to go toilet as I wil pass alot of mucus with it av had 2 colonoscopy both cudnt get allway round as it was very painful an stuck. I did want a hysterectomy as I couldn cope anymore but with the risk I decided against it in dec an now me other ovary an tube are to bad av been told it will be a hysterectomy just need to see how me bowel is. Does any one have regular feelings of a pulling sensation I describe it as me insides fallin out sometimes its that bad I can walk. X

fibobs79 profile image
fibobs79

Some of your symptoms sound very familiar to me. I'm booked in for my first lap 26th Feb and I'm dreading what they might find. I have some terrible bowel issues. I've always had them but for last three years it's all been ten times worse always later in the day and particularly after food.

fibobs79 profile image
fibobs79

Yes I'm not sure they will do anything other than look. Had such a hard time getting them to do a lap. Started off with a terrible consultant thank goodness for my excellent GP.

stevieflp profile image
stevieflp

leannelouise

Re hysterectomy, just bear in mind that a hysterectomy is only useful if you have adenomyosis (endo like growths in the uterine muscle / wall) and of course for other gynaecological conditions such as heavy bleeding and fibroids etc. It will have no benefit for peritoneal endo (i.e. endo elsewhere within the peritoneal cavity). This is generally they type of endo that sticks internal organs together such as bowel / bladder / ovaries etc.

The experts believe that Endo (peritoneal cavity) and Adenomysis do not have the same origin and do not necessarily migrate one into the other and so are separate conditions; albeit ladies who have peritoneal endo, do sometimes have adenomyosis also.

Apparently, medical training for doctors relating to endo is still based on research undertaken 50 years ago and much of that original thinking is now considered flawed/out of date by today's endo experts - but still remains the basis of general medical training. Hence you still get gynaes saying hysterectomy cures endo, regardless of where you have it!

The top endo consultants say the best option for peritoneal endo is excision surgery to remove the endo.

Where a hysterectomy is performed for adenomyosis or other gynaecological reason, and endo is also present in the peritoneal cavity, then excision surgery should be performed at the same time to deal with this, otherwise, your adeno will have been dealt with but not the other endo.

My first gynae consultant told me after an investigatory lap that I was a 'total mess' and my only hope was a hysterectomy and oophrectomy. After researching on the internet, it became apparent this was not my only option and, in fact, as my endo was extensive throughout the peritoneal cavity, I would have had a hysterectomy that I may not have needed if adeno was not present and still be riddled with endo. I would have lost my perfectly well working ovaries (albeit stuck up and chocolate cysts - but this was not irreparable by a skilled surgeon) and would have been on synthetic HRT.

I ended up with a different surgeon and had excision surgery to remove the endo.

I learnt that the specialism of my first consultant was in fact performing hysterectomies! This in itself would have been fine if there was a strong suspicion of adeno or if she had also recommended excision alongside for the extensive peritoneal endo that I had (frozen pelvis affecting bowel, bladder, ovaries, utero-sacral ligaments, diaphragm, obliteration of pouch of douglas (rectal/vaginal)). Although she had advertised as treating endo, she did later admit when I questioned her about excision surgery that she "only does a little bit of excision surgery'.

Anyway, I learnt a great lesson to look into the specialisms of consultants and I changed to see an endo consultant surgeon whose experience was rather more than a 'little excision". GPs tend to refer you to whoever has the title 'Gynae' at the local hospital - but they all have such a wide range of specialisms and some really are 'general' with a broad spectrum of knowledge but not specialising in particular.

If not already under an accredited endo centre, I certainly would recommend that you seek a referral to one of these from your GP.

All best wishes x x

Kirstyferg profile image
Kirstyferg

Yes, me (28) am waiting on total hysterectomy which they have said getting the ovaries out will clear up any other adhesions. X

Bokkie profile image
Bokkie

I have Endo on my bowels too. It hasn't penetrated them and I am lucky that I don't get the pain when on the loo or any bleeding but I do get terrible constipation at times and end up visiting the loo quite a few times to get rid of it. Then it's diarrhea! Was told I had IBS for years and was even checked out for bowel cancer because my Dad had it when he was 35..X

Sammie721 profile image
Sammie721 in reply to Bokkie

Hi. You have explained the same symptoms as me. If you don't mind me asking are you on medication or are you going to have surgery? I'm confused with mine as I still have to wait for my results x

Bokkie profile image
Bokkie in reply to Sammie721

Hi Sammie721, I am not sure, compared to other ladies on this forum, if my bowels are bad enough for surgery as it is more of an inconvenience than anything. Sometimes I get bad wind and pains associated with that but nothing else. If I do have anything done it will probably be if I have a complete hysterectomy which could be a possibility in the future now. I am currently coming to the end of being on Depo-Provera injections but that doesn't seem to help with the bowel problem anyway. X

Sammie721 profile image
Sammie721 in reply to Bokkie

Thanks for reply. I know it sound silly but I'm 41 and I don't want any more children so I would rather have hysterectomy than go on medication. X

Bokkie profile image
Bokkie in reply to Sammie721

No it doesn't sound silly at all. I am 48 and finished having children too. Would they give you hysterectomy at 41 though? X

Sammie721 profile image
Sammie721 in reply to Bokkie

I would rather they did. I've just had cancer removed from my head!! It's been hard as it's left my very badly scarred and I've got reconstruction in 18 months time if cancer don't come in this time. I really don't get on with taking medication especially hormone ones :(( my mum had hysterectomy at 32 but it was something completely different. X

Bokkie profile image
Bokkie in reply to Sammie721

Oh dear! Poor you! well I guess it's up to you whether or not you have a hysterectomy but after your cancer surgery if you have other surgery coming up for that later, are you sure you could cope with a hysterectomy too? Have you asked about it?

Sammie721 profile image
Sammie721 in reply to Bokkie

I go back to see gyon next week so I can to then. Haven't spoken to anyone about this yet.

Bokkie profile image
Bokkie in reply to Sammie721

Good luck! I hope you get on ok and get the answers you need. X

Sammie721 profile image
Sammie721 in reply to Bokkie

Thank you x

Sammie721 profile image
Sammie721

Hi leannelouise. Think we have something in common. My grade 4 endo has covered my colon and I've had ct and ultrasound and this week my MRI. I have not to much pain but I can feel something is wrong , I get odd pains and constipation. I'm really worried what is going to happen ?

PainSucks profile image
PainSucks

Hi YellowRose, after I ate this morning I felt pain worsening. Thought is was my imagination but it was really worse after eating. I tend to not eat properly lately as well because I have noticed pain when eating - so I tend to avoid food...which is not good of course.

I had a fruit a few minutes ago and it feels as if someone is twisting my insides , especially to my right..

Collected my first Visanne tablets as prescribed to me about a week ago, but not keen to use them at all. Side effects and stuff sounds bit hectic.

rashidaakoonjee profile image
rashidaakoonjee

Hi im 4rm south africa.43yrs old.ive suffered frm severe pains in my first 3 days of period esp in my bak passage.aftr my 7th day the pain cums bak fr anthr seven in my lower bak passage.gp.othapaedic n physician chek ups al sen me home wth painkillers. It took 1 n half years to monitor ds pain.2011 I ws diagnosed wth endo bhind my uterus n embedded in my bowel.mri shows its in my bowel muscle.aftr goin on injection to stop pwriod fr 3 mnths I bloated n gt bg boobs.i postponed op.pain gt mor agresive.i limp wen I hv da pain my lower bak sore.2 weeks in da month my kids hv to bare a bedriden n drugd mum.in nov las yr gynae put me on new tab.to stop periods cald visanne.surprisingly ds pain neva wnt.evrytym I hd a bowel movement I gt cripplin pain . painkillers took a while b4 it wrkd.i shiver in pain.my family lyf ws put on hold evrytym my bowel wrkd.ds ws frustrating.wnt bak to gynae 2 weeks ago.dr advised to c a surgeon n we go ahead wth op.i am so desperate dt I agreed.bt surgeon mde it vry clear hel hv to remove part of my bowel muscle wich ql leav me wth a colon bag.im gtn cold feet as da days ar cumin near.its da 1st tym I surf da net.so many woman ar hvn da same pain.bt ders no 1 ive read dt did da op n hv da colon bag.gynae adviced dt my uterus hs to b removed wtg ovaries xos ovaries cause oestrogen n frm der endo strts.my uterus hv endomyosis similar to endo.im so scared cos da pre op is da las week of feb wth surgeon to chek hw far n wt goin on(lapopen surgery fr removal.pls reply if ani1 hs hd ds kind of op.i worried sick.ots mkn me mentally drained..

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