Hidden

I think these symptoms sound like they could be caused by your endometriosis affecting your bowel. What treatment will you be having? Are you due to have surgery? X

Emmy-89 in reply to Hidden

Hi thanks for your reply. I have been offered surgery to separate my bowel and womb but I'm not sure what to do as its a combined surgery which has more risks. They also spoke about doing the op in 2 parts, in between the 2 op's I'd have to be put into a temporary menopause which I've been through before and it was hell so feel stuck as to what to do.

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Hidden in reply to Emmy-89

I had this surgery but I was lucky and was able to have it as one op. I felt loads better after with a big reduction in my symptoms so I would say the surgery is worth giving a lot of thought. I had mine done in an endo specialist centre X

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Emmy-89 in reply to Hidden

It's good to hear that you had a positive outcome! Did you have to have a colostomy bag or anything after? I guess the main thing that scares me is the possible complications or ending up worse than I am now. Feel really stuck as to what to do :/

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Hidden in reply to Emmy-89

No, nothing like that and I recovered really well X

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FaithMarie in reply to Emmy-89

I'm actually having the same surgery in November x worried as well with ileostomy bag as a risk afterwards. Any update on how you're going so far?

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Noeymb

Hi

Before i was diagnosed in 2013 with endo i had the same symptoms. I was sometimes not even finished with my food then i had to go to the loo was really frustratin. I also have stage 4 and they found it next to my womb. I actually have now a new prob. i have to drink in the mornin lots of orange juice and water to go to the toilet, i'm now even tryin to avoid goin to da restuarants cos i know that in da mornin i'll be like constipated, next week tuesday i'll visit a endo clinic for da 1 st time and i'm happy and sad at the same time i'm just so afraid that they'll say they have to op. again cos of this pain i have on my bowel. I really envy people that eats everything as in what one suppose to be eating. Only Gods knows how we are sufferin with this endo😣

Be strong xoxoxo

Emmy-89 in reply to Noeymb

I know people are so lucky being able to lead a normal life and enjoy food without worrying! Good luck to with tour appointment!

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mablesky

Hi there

I had the same symptoms you describe have I had endo nodules in the bowel have had them removed .

I was told you don't always get symptoms with endo on the bowel but of course some people do ,everyone's different if it's infiltrated into the bowel you almost always get symptoms .

if there is bowel involvement you must be seen in an endo centre .

I have had some relief from the surgery but not all symptoms have gone although it's still early days .

They may want to do some tests to rule out anything else ie diverticular etc and some times an MRI can show bowel endo .

Are you waiting for surgery??

Emmy-89 in reply to mablesky

Hello, yea I've been offered surgery but I'm worried about going ahead with it because the endo specialist said that he had been looking at pictures from my last surgery, he said that I need a combined operation to separate my womb from my bowel which scares me because of the possible complications involved. Did you have a combined surgery?

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mablesky in reply to Emmy-89

Hi there

I had a bowel resection and ovary ,Fallopian tube removed ,adhesions cut and few more bits and pieces done .

I thought long and hard about having especially the bowel surgery done and two months on apart from niggles I feel really good and I think it was the best decision for me .I was given worst case scenarios and possible complications ,but I came through it well

Bowel surgery is a scary thought I know ,and it needs a lot of thought ,

I wonder if you can have a chat with the endo nurse specialist to talk through some concerns

What ever you decide I wish you all the best

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FaithMarie in reply to mablesky

Hi, glad to hear all went well with your surgery x I'm due one in November and I'm very worried about the risk of having a bag too. Bowel resection sounds scary 😞 How long did you need to recover after this op?

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Flicky31

I had the same symptoms and like noemybe I now suffer the other way and have to take laxatives, i was also told that the depo injection slows bowel down. I suffer with hemaroids the size of watermelons which I need to have sorted. Had my op 2 yrs ago and it relieved the symptoms so does a gluten free diet helps with the acid and nausea.

Emmy-89 in reply to Flicky31

Thanks for your advise, I'm actually about to try the endo diet. I feel so nauseas a lot of the time, especially the past few days. I can't even get out of bed today because I feel so sick. I'm struggling to eat, all I've managed is a couple of plain biscuits! I'm sorry to hear about your struggles, sounds awful! Seems like you can't win with this disease!

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Flicky31 in reply to Emmy-89

It is terrible and I had those days before surgery and alot of the time thought to my self get a grip it can't be that bad, but it is and it was only after surgery I really appreciated how bad it was. I hope you feel well soon take it easy and try and drink plenty of fluids if you not eating xxxxx

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Emmy-89 in reply to Flicky31

I think exactly the same! It's hard when no one around you really understands how you feel so always helps to speak to people who understand!

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Booboo08

Yep this is true syptoms of the bowel been affected by endo.

I thought something else was wrong to but after diagnostic lap it confirmed bowel and womb are stuck together and I have same syptoms as you.

I don't eat out anymore either and have lost 3 stone due to fear of pain.

I alternate diarrhoea and constipation.

I've found don't have diarrhoea as much with healthy food.

So cut out fried, fatty foods. See if this helps . Should help with acid too.

I also find diary and carbs make it worse.

What's doc said next steps are?

I'm waiting on a mri scan see how deep it is before next op xxxxx hugs

Emmy-89 in reply to Booboo08

Hey thanks for your advise! I'm just about to try the endo diet, fingers crossed it will help a bit at least! I have been offered a combined surgery to separate my bowel from my womb but I'm afraid of having the op due to the higher risk of complications, I also have to have the op in 2 parts with a 3 month gap in between where I will be put into a false menopause. I have been put into a false menopause before and it was hell, never felt so terrible. I figured at the time that id rather be in pain than feel the way I did whilst having that treatment!

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Emmy-89

I actually haven't had an MRI and they didn't mention doing one. The endo specialist I saw went off notes and photos from my last surgery. He did mention that if I'm to go ahead with the surgery that I will be referred to a bowel specialist. And thank you I will have a look at your post

Booboo08

Oh dear so you're stuck between a rock and a hard place.

Why was the op in two parts?

Sorry for sounding dim but it might be relevant to me.

Defo try the endo diet its helped me no end. Cant stress enough how much pain it relieved me.

Xxx

Emmy-89 in reply to Booboo08

I'm not sure why to be honest, that is something I wonder about also. I plan to go back to see the endo specialist and ask some questions. I'll let you know when I manage to find out!

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Cla1re

I have similar symptoms so am following this thread with interest...

Hwood14

It might be worth getting checked for h pylori which can be associated with acid reflux and stomach ulcers. My partner has it. Just a thought x

Emmy-89 in reply to Hwood14

Hi thanks, that is a good point actually!

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Jojochatterbox45

Hi Emmy-89,

I had this op in September 2015, like you I had endo on my bowels, bladder and womb, they were 'fused' together! I was told I was having a recto surgeon in the operation with me as there was the strong possibility of a resection. Apparently my bowel fell away when they lifted my womb. The recto surgeon stepped to the operating table to do his bit on three separate occasions, but saved me from having a resection. This I was grateful for. Unfortunately, I have experienced severe consequences with pain and constipation since my operation. I am now waiting to be seen by the bowel surgeon, this is at Southmead in Bristol, where I had my operation. I had my endo operation by one of the best surgeons available. No I can't say how well my operation went for th endo due to the agony I'm in from the pain in my left side. I research all the time and I feel that the majority of my pain was and is from the bowels. I think in hindsight, I would have preferred the bowel resection and had all the endo effected colon removed!

Possibly the second part of the operation that they are referring to could be the re-connection of the colon? As this is only a temporary measure and would not be a life long situation!

Speak to the Endo nurses, get some counselling if you are having a hysterectomy, you will need this..... Throughly weigh up the pro's and con's ..... If they can help you achieve the best operation, with the right out come for you, then you can get the life back you deserve. But do some of the leg work yourself because they don't do it all for you. Unfortunately you are just another patient who is in need of treatment in a long line of many and they just don't give you all the collective information and organisational information of groups that are out there to help you. I hope this helps.

Much love

Jo xx

rainey6373

Hi.  Hope you are ok.  I have frozen pelvis. My old gynae attempted to carry out a hysterectomy but looking back seemed ignorant to how bad I was.  She could not perform it and had to call a bowel surgeon in whilst I was in theatre for advice.  They only managed to remove an 11cm cyst and the ovary it was stuck to. She then discharged me from her care, never to to be seen again and put on Norethisterone to stop my periods.  18 months later I had severe pains in my stomach ( I have a high pain threshold ) turns out the endo on my bowel had twisted it and blocked it.  To cut a long story short,  this resulted in having an emergency bowel resection after the first hospital I went to said it had cleared after 4 days,  and my GP sent me to another hospital.  

I would have the op done if it is being offered.  It's not pleasant,  but you will feel better.  I was lucky not to have a stoma.  My bowel consultant and his team were amazing. I was allowed home 7 days after the op.  Had 3 months off work ( my scar is about 28cm / had 40 staples),  I am now on Prostap with Tibolone add back,  and under the care of a very good gynae who will not discharge me from his care,  and insists if I feel anything does not feel right that I contact his secretary immediately. 

sukoshi

Emmy-89 this was a really helpful thread you started. How are you doing now? I was wondering for any of the ladies who mentioned having bowel involvement with their endo - did this always show up on MRI? I have had many of the symptoms listed for YEARS - unexplained nausea, gas, stomach pain, diarrhea, heartburn. Have been diagnosed w/ both acid reflux and IBS, but it wasn't until all my other problems came to a head that my doctors started thinking these gastro symptoms could be related to endo. I am having a colonoscopy in a few weeks in preparation for my first lap in Oct. Just wondering if your doctors knew ahead of time of bowel involvement through scans/tests or if it can be a surprise once they get in to do the surgery. I don't think I will have a bowel specialist present during the surgery, which is why I ask...

Emmy-89 in reply to sukoshi

Hi Sukoshi,

For me I never had an MRI before my first lap. It all originally started with me having a transvaginal ultrasound where they picked up a very large cyst on my ovary, they booked me in for surgery to remove the cyst and didn't pick up any endo at all on the ultrasound. It wasn't until they Did the lap that they diagnosed endo, including the bowel endo. I think it is a good thing that you are having a colonoscopy first as this should show if the endo has penetrated through the bowel and how deep it goes. I would definitely say ask if there will be a bowel surgeon present. Also are you being seen at a specialist centre? It's important that if you are having a more complicated surgery that involves things like the bowel that you get it done at a BSGE centre. Have you been diagnosed with endo already or are you waiting for a confirmed diagnosis? It does sound very like endo with the symptoms you are describing.

I am currently awaiting surgery, I've just had my pre op assessment so just waiting for a date to come through the post. I will be having some surgery to remove some of the bowel endo and am also having recto-vaginal surgery in the same op.

As far as symptoms I have actually improved since posting this (touch wood!!!) I began a gluten and wheat free diet, along with cutting out dairy as I felt that they were just adding to my symptoms (especially acid reflux) I have noticed an improvement since doing this. I also work out at the gym around 3 times a week which I started back in Feb, I don't do anything too strenuous. The other thing I decided to try is a supplement called Endovan, which I am now 3 months into. It's hard to know exactly what has made the most difference but I believe the combination of what I have tried to do to help myself has definitely helped me and has certainly helped more than any of the hormone treatments etc... I can say for sure that the Endovan have cut my pain down when I am on my period. I don't get the cramps I used to. I no longer need the strong painkillers!! I still get some moderate cramping the first day or two of my period but it's nothing a couple of paracetamol won't fix. I do believe this is the Endovan which has really helped in that area. I do take lansoprezole now for the acid reflux which has helped improve the acid problem. It got to the point where I was so ill all the time, I did some research and decided to try these things. I mean I can't say that it would help everyone but for me it has improved my quality of life. I still hope to improve further but I am happy that I am not where I was 6 months ago. I hope this is of some help and I hope that your lap goes well! Let me know how it goes!

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