Hey there, follwoing my 5th surgery 4 weeks ago, I have been told that i need to have a bowel resection and endo excison. Anyone had this?

I have been diagnosed for 9 yearsnow and just had my 5th surgery. In the last 16 months I have had 3 surgeries and suffer with chronic bowel failure because of the damage and the endo. Now finding out I need evem more surgery and a bowel resectionI am distraught and scared to death!! Can anyone give me any advice or info. I have been referred to Guildford specialists.

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  • my friend has just had a bowel and bladder repaired/parts of removed but not due to endo, but just both prolapsed - i know its not anything to do with endo but just thought it might make you feel a bit better that she is doing very, very well, she had lived a life of barely going out and lots of pain, so in a similar position to endo sufferers but just in a different way, but within in days she said her pain was almost gone - her recovery time is much the same as a hysterectomy - i'm sorry i can't offer anymore though but hope somebody can add more to try to put your mind at rest xx

  • Hi Andrea, Yes I have had a bowel resection caused by endo - in fact I had about six inches of bowel removed. Once I had this done my period pain on the left side was much much better and so were my other symptoms. I had my treatment in Bristol and was actually operated on by a bowel surgeon - as at this time I had not been diagnosed with endo. I was really lucky and had what they call a single incision laparoscopic surgery through my belly button with just the one cut. My recovery was also quick and I had the op on a Saturday morning and was back at work a week on Monday, although this was the first major operation I'd ever had.....I was then referred straight away to the Bristol Endo Clinic who were brilliant but have since had to have hysterectomy and bladder resection for very extensive endo carried out by the consultant there. I suppose I am saying make sure you are happy with your consultant and his procedures and see if you are having it done laprascopically as this will aid your recovery. I would also make sure your consultant is experienced with endo and from what I understand the only effective treatment is to actually have it excised. Good luck x

  • Hi

    i had excision surgery done in April and in took me around 4 weeks to start recovering properly, was around a week before I could have a bath without my boyfriend helping me.

    I have been virtually pain free since around the middle - end off May.

    It was a bit painful after the surgery and cant comment on the bowel resection but being more or less pain free its worth it.

    Good Luck

    Stay Strong :)

    xx

  • Hi hun , I am waiting for the same op myself but will be having a hysterectomy as well I hope you get sorted soon and all goes well, my surgeons have said that they will do everything to avoid s resection they do this by working together gynea and colorectal.

    Waiting times are hell but the surgeon's are great

  • Thank you for your comments ladies, I really do appreciate it. I laid all of my hopes on my June surgery being able to get back to some sort of life, but alas this was not to be the case. The need to resection the bladder too apparently... I never even knew that this was possible!! Amazing what we all have to go through. Its just a shame the delights of the NHS cannot give me a time frame as for when this will be taking place. I see my own consultant I have been with for years in September - hoping that he will be able to give me some real detail as to what I am to expect.

    xxxx

  • Hi Andrea

    Just wondered how you were recovering from surgery. I am facing similar surgery too. Thansk x

  • Hey there. Still I am waiting for the dates for my surgery... I have been reassigned to an endo specialist and a bowel surgical team and they have down lots of tests to gauge how bad things are. I've had an MRI, which brought up a whole host of additional probs, by showing 10 fibroids in my pelvis. Also had sigmoidoscopy and colonoscopy, to assess how deep into the bowel the endo is. The MRI also showed the endo was attached to muscles and ligaments. So I am glad these have all been done to show how things are before the doctors go in. I see my team on Monday of next week and hoping that dates will finally be discussed. My body has stopped responding to all treatment and I'm on morphine now as a daily need. Because the endo needs excision, I've been told I have to have open surgery. And because of the fibroids and the nerve damage they have caused, I will always now have to use a walking stick. Also that a hyster may be needed because of the number of fibroids. All these tests they have done really opened up and found many things. So though frustrating to have to go through I am glad that they did. I will of course keep you posted. What stage are you at with getting your surgery? Do you have a bowel team as well as a gynae team??

    A

    Xxxx

  • Hi thanks for responding. Its early days for me I have also had an MRI scan and sigmoidoscopy. I could see during the oscopy that there were 3 patches of endo and they took biopsys. I havnt had a colonoscopy and this was explained that this was because I am passing only red blood and so that is why they have only examined the lower colon. The surgeon I have is a general surgeon who specialises in gastrointestinal surgery and my usual gynea whose been treating me for the last 3 years. I go back on Wednesday to see the gynea so I will know more then. I want to know what they have planned and how extensive the surgery may be. I am also going to ask about medical treatment in the hope that going back on the pill eg may stop the endo from getting worse again. I am sorry that you have been so badly affected by the pain and damage the endo has caused. I am lucky as I only get pain during my period, but on the other hand not feeling the pain has meant that this problem has probably been an issue for sometime, if not from the beginning and the damage is already done. I hope that everything goes well for you, please let me know how you get on. Thnaks x

  • It's good to know you are going through the same explorations and they are really seeing what is going on with it all. I keep everything crossed for you. Good that you have a gastro team too. It's quite reassuring when you know you have good people committed to your care. I agree that the post op treatment is just as important to try and manage the symptoms and at least stop things progressing to a worse state.

    Look after yourself.

    A

    Xxx

  • Hi Andrea

    Just wondered how you got on? I went to see my gyea a few weeks ago and decided to just go back on the pill and see how it rolls. For me the risks around the op are too risky. I am going to see how my symptoms are over the next few months then go back to the Gynea for a check up. I havent seen the bowel surgeon yet, so did not actually get a full low down on whats occuring in there, looks like I am gonna have to ask to see him. Fortunatley my symptoms are confined to time of the month and are otherwise mild the rest of the month. Hope things are going well for you x

  • Hey. Your case sounds very similar to mine. I sympathise. I have endo on my bowel and am on my 6th month of zoledex before a bowel resection. (When the hospital get round to it). I've just come home from work in agony of a water infection. Hoping it's just that and not connected to the endo. Docs have given me antibiotics so will see what that does. Let me know how you get on x

  • I too am on Zoladex to see how i get on before i have a hysterectomy, which i am very reluctant to pursue and am therefore getting a second opinion and being referred to St Marys Manchester as they have a specialist endo clinic there. I have been quite well on the Zoladex, suprised me as to how unwell i felt before it!

  • Hi, could any of you please tell me how you have had your bowel endo diagnosed? As I had laporoscopy a year ago and they seemed to focus on removal of endo cyst on ovary, plus they excised some endo from womb ligaments. I had asked them specifically to look around my bowel area as have had years of agony when going to number twos during period (and blood). After the op the Consultant said yes they do, out of standard practice, look all around everywhere and the next minute the same Consultant told my mum that they 'had not been looking for endo on the bowel'. I have had a colonoscopy and swallowed a camera which found ulceration in several parts of bowel so they are now saying Crohns. My mum has Crohns but I have none of the symptoms apart from pain which is triggered by periods. I just am desperate to find out whether endo can cause ulcers in bowel?

  • Me too. Am waiting for surgery in Brighton in March. Am more worried about having ovaries removed. I have suffered with pain and chronic constipation for years but my gp still says it's ibs.