I am waiting for my second endo surgery and I am in chronic pain with my bowel issues it’s causing me a lot of distress when it only gets worse I have diarrhoea and constant sporadic bowel issues throughout the whole day and it only gets worse. I am scared as I have this terrible stabbing pain upper right side which isn’t where my endo is however I’m hoping it’s connected. I also have endo in the pounch of Douglas. During the build up to my period and bleed is the worst but I am In so much pain all the time. The evenings are the worst I feel so sick and really struggling.
I wanted to post this to get some positive replies from people who have gone through the surgery and come out after recover feeling much better and bowel issues have been resolved.
Please don’t reply with negative things as I am really on the edge just looking for some hope that one day after surgery things will be better.
Thank you 😊 xx
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MyStar86
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Sorry to hear you are in so much pain. This condition is horrible, but keep positive.
I had a bowel resection 2.5 years ago now, and it was the best thing I ever did.
Like you I had lots of pain, constant upset stomach, or constipated.
I was recommended to use movicoil whilst waiting for surgery, which did help to keep me regular. I only took enough that it softened things, and made it easier for me to go to toliet. I was also on depecaptyl injections monthly to help manage the pain. These were great, and I took HRT to help manage side effects
For me the surgery felt pretty easy, I was expecting so much worse. I was in hospital for 5 day, and was back to work after 7.5 weeks. And it has made a huge difference on my life.
I no longer have pain which I associate with bowel movements , and no longer have upset stomachs. I'm so happy that I decided to go ahead, for me it had got to the point where I didn't really have a choice, pain was unbearable and I had a few incidents where I could no longer had control.
Do you have a date for your surgery? I hope you get some relief soon.
Thank you soooooo much that’s exactly what I needed to hear as I’ve really been struggling and worrying that the surgery won’t solve all the bowel issues as I’ve suffered for so long I was just starting to lose hope.
I did have Zoladex prior to my first surgery similar to the injection you had, I also had hrt but still couldn’t handle the side effects. The back pain was horrific as I have osteoporosis so it was always a risk having the Zoladex I even begged to have the implant removed I hated it so much. Making it not an option for me going forward and it didn’t help with my pain however I only lasted a month and refused anymore as I got the surgery the same day my next injection would of been due anyway. However that surgery didn’t help it was only to remove some endo from pelvis and ligaments I had to wait to see the bowel endo specialist for this side of things.
I’m glad you didn’t come back with oh have you tried changing your diet as most people say however that makes no difference I have the cleanest diet and whatever I change has zero effect my gastric issues are always the same and at the moment they seem to be spiralling causing so much pain. It always feels like everything gets stuck which is horrible having my tummy swelling and gurgling sloshing around causing evil pain.
However at least now I know the surgery could be the solution to all the gastric problems then it makes it less scary!!! Thank you for giving me some hope back when I needed it the most 😊.
How did you find your periods after surgery? I’m assuming you stopped the injections as they cannot be used longterm.
Thank you so much and I hope you have a lovely Sunday xx
Same as you the diet eating certain foods never helped me. I tried the fod maps diet, and nothing changed. I don't eat diary as it does make my stomach worse, but since surgery I can tolerate diary not every day but it's nice to be able to go out for meal, and eat most things, and not suffer.
My surgery was several things at once , I'm stage 4 endo, so the removed as much as they could, and I had a coil fitted.
Yes I came off the depecaptyl after surgery, however the coil didn't work for me, and had to have it removed after 1 year.
I'm waiting for more surgery ( hoping in next month or so) as my bleeding patterns are worse. I was always we extremely heavy but pill would keep me regular and control it. I'm back on pill, but bleed constantly but much much lighter and pain is low. A paracetamol will stop the pain. I bleed up to 40 days then have a break, I'm just never sure when it can happen.
As far a bowels go... I'm prettyuch Pai. Free. I have the odd twinge of pain, but I'm so so happy I had it done. Would do it all over again xxxx
I hope you get some relief soon. XXX any questions you have about the surgery. Feel free to ask x
Out of interest how did you get them to take you seriously for surgery? My bowel is stuck to my uterus and they're trying me on Prostap etc before even referring me to someone to do surgery. And I'm worried that if I do get surgery it goes wrong because every gyn has told me my bowel can get damaged and it makes me feel like they're really reluctant to fix the problem, which doesnt fill me full of confidence 😬 x
I had suffered with my bowels and stomach for years, and I was being tested for chrome's disease.
After a long story involving hospital being unable to complete a colonoscopy, I had several scans and was diagnosed with endometriosis.
I had what they described as a thickening on the bend of my colon, which was why they were unable to complete the colonoscopy.
I had surgery for the endometriosis at my local hospital but they refused to treat the bowel endo.
I was referred the a BSGE endo centre, who did there own scans and procedures. It was never a question with them. My colon was compressed and it made it difficult for me to pass a bowel movement, and my colon was described as kinked, it had stuck to itself in a zigzag formation then stuck to the muscle on my lower back and womb.
I'm still being treated at a BSGE centre.
There is a risk with any surgery. I was given a page of risks and what could happen, I was expecting to wake up with a stoma, but was lucky to have 2 surgeons working on me for 7hrs straight.
I'm not.. I'm basically in the middle of asking a second opinion and my gyn is trying to determine if I can be referred to the centre in Liverpool (I'm in North Wales and there's nothing here). In the meantime I'm on injections for 6 months and as it's taken so long to get a second opinion I will probably need another lap to see if things have got worse since my last one. Were you referred bt your GP to your centre? I feel like my gyn just doesn't want to sort out the issue, like why can't they just refer me to there straight away 😫 x
I originally was meant to be on zoladex for 6 months, that turned into 18 months plus another lap, then was put on decaptyl again for 6 months, but turned into almost 2 years..... !!!!
I was referred by the gyne at my first hospital. I just asked an she put together a letter for me to be referred to a BSGE centre. My GP would not help.
I would push to get into a BSGE centre, then they work as a team bringing in who you need to see e.g pain relief team, bowel surgeon, endo nurse ect.
Just came here to say thanks for creating this post. I have bowel adhesions and its just all doom and gloom all the time and I can never get anu straight answers from anyone in the NHS. It's nice to hear good things!
I know we need some hope!!! I can’t say re the nhs as I went private due to waiting times and I have insurance so it was the best way for me to get help faster and even that still takes months but not years like nhs since covid. The doctors have to tell you all the risks I had the same thing one even said well endo won’t kill you but the surgery could so try not to focus on that it’s legal for them they have to cover everything but loads of people on here have had bowel surgery it’s just more complex and needs multiple surgeons that’s why it takes longer. I was told I had to have the Zoladex too but I refused and they respected my wishes however it does help some people I just found it caused more issues for me.
Let’s hope we get more positive replies!!!!xx need some good stories on here xx
Yes NHS is awful atm.. I asked for a second opinion 2 years ago now and I'm still waiting on them actually dealing with the issue, rather than just masking it. It's exhausting advocating for yourself all the time and trying to stay positive isnt it?! Xx
Hello, so sorry to hear your in pain, believe me I know how this feels. I was in hospital exactly one month after my ovary & tube removal surgery due to first period and endo flare up on my bowel which they didn’t remove in the ovary removal surgery because it was a big mass the size of a fist covering bowel, nerves, etc. I also have endo stuck on pouch of Douglas. I’m upset that they didnt try to remove the endo on the bowel during the second lap but I suspect because it’s tricky surgery to do.
I’m now 2month since surgery, 2nd period just happened and still taking some nerve pain medication, a progesterone daily pill plus 2tabs of Senna laxative each day. This has helped keep my motions regular and bleeding to normal level. I seem to suffered from more pain & constipation & Ibs when on period now.
I am finding peppermint tea (Tea pigs is the best) has helped with IBS and pain. Plus cut out caffeine and gluten entirely from diet.
I also weirdly found doing some yoga moves aggravated the end pain so just doing some easy walks and resting (where I lie down) not just sitting in a chair, especially on period days.
Talking to consultant in Dec to see what follow up surgery or hormone treatment I need as not happy about taking a daily laxative is such a great idea for my bowel.
Also finding I’m quite short tempered on the progesterone pill. I have also take. Zoladex in the past.
Your not alone on this journey, many of us out there in similar situations and fighting through the pain. Stay strong and do what you feel is right. Surgery won’t always cure the pain, just be ready for more treatments and discussions with the doctors.
I feel your frustration, this condition is so debilitating at times.
My symptoms have always been mostly bowel related and post surgery 6 years ago I felt like a new person. No pain/bloating and so lovely to be able to enjoy a meal without suffering afterwards.
My symptoms have slowly resurfaced, I think maybe as the Mirena coil has become less effective.
Same here re diet but I have found that probiotics and supplements for leaky gut have made a noticeable difference.
Good luck with your surgery, we’re all different and there are always risks but definitely good results are possible…and life changing x
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