So I finally has my bowel resection to remove the remainder of the endo.
The surgery went well in the sense that I did not need a stoma as they were able rejoin it. It took just over 6 hours for the resection. In equally good news there was no trace of my previously excised endo or endo anywhere other than expected.
Unfortunately, as my ports were removed they hit a blood vessels in my stomach wall. I was incredibly ill which to cut a long story short lead to 5 units of blood and emergency surgery. So I have been quite poorly in hospital.
However, I am starting to feel better, I can tolerate small meals and the pain is manageable. I will let everyone know about the effect the op has on my symptoms
Dx
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Me too, my left ovary is also tangled up and stuck to back of my uterus/bowel, I have suspected adeno too. I had a diagnostic lap in Jan, got my follow up app tomorrow, I've been on Prostap injection (3monthly) which I think is like Zoladex. Can't say I've had any relief from it, I've still been getting periods with it and just as painful - not sure what that means.
My sigmoidoscopy came back clear but my endo gyne thinks it may have only partly infiltrated which would mean a part-resection, unless it has fully infiltrated above where the sigmoidoscopy was then it will be a full resection of the bowel.
Hope you're not waiting too long for your op - I'm hoping mine will be soon, he told me it would be within 3 months but they have struggled to get a date between the endo consultant and bowel specialist xx
Hi there, can I ask who did your bowel surgery? Were you satisfied the surgeon did a good job? I have endo around bowel, pouch of Douglas and uterus. I am due to see a specialist at uclh. You can message me on vanna.iozzi@gmail.com thanks Giovanna
I have an appointment next week at UCLH , very nervous as heard such mixed things about them, just wondering what your experience was & who with. Hope you are feeling better after your op .
Hi I have same condition like you. My sigmoid colon attached with uterus. In the line of attachment there are some nodules which are hard as like as koncrete.(revealed from my laparoscopy on this 5 th may) I'm seeing a private doctor at this moment. I'm new in uk. Can you tell me what is uclh? Is it good?
Yes I do, I have no new adhesions from the first surgery and none of the endo had returned. I had it removed from my POD, USL and my bowel and uterus unstuck initially.
My bowel surgery was done well and it was complex. I avoided a stoma which was great. I obviously had a bleed but I was unlucky and I knew it was a risk of the op.
My surgeons were lovely, approachable and clear. One of them rang up on his day off to check I was OK following the repair of my bleed.
Hi DA, gosh you've been through it! So pleased you are feeling stronger & it's wonderful to hear the Endo didn't recur 😄 Please can you pm your Consultants dets? Wish you a speedy recovery
Hi, I had bowel resection done in 2009 and they managed to rejoin my bowels together. I was very poorly after my operation spent 9 weeks in hospital and a further 1 year recovering. Like you I could only manage a few bites of my meals and I'm still like that can't eat a lot. Still having problems with Endo and adhesions. Due to my bowel resection I'm now diagnosed with celiac disease.
Wishing you a speedy recovery, hope everything goes well for you now.
Hi, yes I had a horrible time and still am. I'm having Zoladex injection for 3 months, but it's not helping me at all, it's making my pains and depression worse. If these injections don't help me then my consultant said I will need an yet another operation and see what's going on inside my bladder, bowels, ovaries.
Glad to hear your recovering, just don't rush into doing any housework or rush back to work.
Hope you feel better soon . Big hugs. Endometrosis is such a horrible recurring disease. Plenty of rest to let all internal stitching heel. I'm currently on synarel to help kill off residual endo on my bowel/ pelvis. I had major surgery 2 years ago and yes it's back. I had a laproscopic hysterectomy, bilateral ovary and appendix removal. I went in for hystetectomy but was diagnosed endo stage 4 in theatre. I had a normal ultrasound in the June of the ovaries . By the time I had urgent surgery in March from waiting list in the Jan. My right ovary wrapped around my badly diseased appendix, my left was densley attached to sigmoid colon. I'm currently having appendix type pain. Surgeons and gynae think it'residual endo left behind. Feels like I'm due on periods but minus a womb. I take non oestrogen vased hrt livial. Endo is a lousy misunderstood disease. You need to rest plenty and take each day as it comes. I know if synarel doesn't work I'll have to have colonoscopy to see if it's penetratedthrough bowel wall before laproscopic surgery. Like you I' m frightened if I need a colostomy. Last time luckily I avoided one. Rather fed up as had to take codeine abd hot water bottle last night for appendix pain. Which they think is endo on bowel !@@@
Thanks, it is indeed. I am sorry you are having such a bad time with it.
I was shocked all the previously removed disease had not come back.
I hated all the painkillers too which is what drove me to go ahead with the resection despite the risks. I wanted to try to reclaim my life. I'll let you know if it was worth it.
Make sure you are at a specialist centre mine have been great.
Sounds like you have been through the mill, but good news about the stoma and that you are now recovering. How long did they say you would need to recover?
I ask as I am due to have a similar operation soon and am unsure what to expect or the recovery after.
Rest up and get well soon, fingers crossed it has achieved the results you hope it will xxx
Thanks, they have said to take it easy for 6/8 weeks and no lifting. I don't feel that bad if I'm honest, I'm only on paracetamol. Obviously I was on morphine/tramadol. I'm also on antibiotics and blood clot injections.
I've escaped hospital, it was just unfortunate that I had a complication. I was unlucky as I don't think it is that common.
I was got up the day after my op (before they realised I was bleeding). They said they had to mobilise me as there is a risk of chest infections and blood clots.
Before the problems he said he thought I would be in hospital for about 5 days as it was major surgery.
I think it is important to get the right specialist. Mine was done at a Specialist centre by a gynae and colorectal surgeon who I had surgery with previously. I am amazed that my excised endo was not back.
Thanks for that info, it helps to know a bit more. I've got my pre op at the end of this week and I am seeing stoma nurse next week so hopefully I'll have more information then. I have very good gynae/ colorectal team lined up from a specialist centre so feel confident with them, I'm just not so confident about the surgery! My last op was a few years ago and was 8 hours long, they were supposed to sort the bowel out but couldn't get to it as I was in such a mess, in the end they had to stop the surgery as it had gone on for so long and I had lost a lot of blood. So this time I am hoping they can be aggressive with the bowel as that is where most of my symptoms are coming from atm.
It sounds good that you are only on paracetamol now, I hope your recovery continues to go well and you are back to full strength with no pain soon! Keep us updated with how you are getting on xxx
Thank you for sharing your experiences. Your symptoms seem spookily similar to mine, I'm a bit further behind, waiting on colonoscopy, apprehensive with a 3 yr old, and reading your experience is re assuring and curious in a way, I'm keen to hear things improve for you despite your surgery complications, good luck x
Thanks, good luck in getting answers. Yes having my son this time around has made it more difficult as I had to spend time away from him in hospital. Plus lifting him etc is out of the question for a while (he's been really understanding which suprised me).
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