Recent lap for adhesions, awful bowel issues, help advice needed... sorry for long post 😩

[Cat247]

Hi all sorry for long post. I was diagnosed with severe stage 4 endo and frozen pelvis a few years back. I had every endo symptom going including bowel issues and bleeding from the bowel. I had excision surgery in May 2014 at a BSGE centre by an accredited surgeon. He changed my life. Once I recovered (which wasn't quick) I was symptom free, no pain and my periods were easy for the first time in my life. I successfully conceived in the December. My pregnancy wasn't easy and I had a lot of pain but I got through it and had a beautiful baby boy in Aug 2015. Since then my symptoms all slowly started to return until such point that I was pretty much in pain in the pelvic region every day! My pain radiates from back of pelvis round to the front into the hip and down the leg. Exactly like before. So on Dec 2016 I saw a gynae (unfortunately my lovely endo surgeon from before has now retired). This gynae felt my endo could be back or I could be suffering with adhesions grown since the previous surgery. He referred me to another Endo Surgeon at an accredited centre. I met a registrar there who said yes we'll do a lap to take a look. I had this lap on 6th March, I literally only got to meet the surgeon briefly before he operated and nobody came to see me after or explain anything. The nurse sent me away that night with a discharge summary that says Both Ovaries adherent to the pelvic sidewall, no endometriosis found within the pelvis, very mild inflammation within the bladder, I do not think the symptoms are gynaecological, No follow up required 😩

I had so many questions regarding this I emailed the secretary a letter to pass to the surgeon. Heard nothing so I left a voicemail a week later chasing it and asking for a return call, nothing! I called again another week later spoke to a lovely lady covering the secretary who assured me she'd pass on my email, still nothing. In the meantime I've had the worst period of my life, pain, nausea, heavy bleeding the lot. Also got put on anti biotics last week as Doc thought I had an infection. My bowels have always been a nightmare apart from that small amount of time between my big op and getting pregnant. So as I'm still getting the same pelvic pain as before this more recent op my GP said it could be bowel related. I saw a registrar yesterday in colo-rectal at the hospital who is going to do a colonoscopy and I've had bloods taken but he basically said I have IBS and my adhesions have probably grown back. I said what in 3 1/2 weeks? He said yes they can. He said I'm going to have to live with pain so once we rule out other stuff in the colonoscopy it'll be about pain management!!! Oh dear god shoot me now! I can't live with pain like this. I've also been told to take 2 sachets of laxido a day which make me feel sick!! I've decided I'm not happy with this response but at the minute no idea where to go or who to go to.

Any advice welcome or any similar experiences. Thank you.xxx

[Annie897]

Hi cat,

Thats terrible that you are unable to get a follow up to get answers to your questions. Have you requested a copy of your notes and the pictures? Its great that you have been seen by a specialist at bsge but you would expect them to keep you updated and informed throughout. I would put a complaint in you have tried several times and you are still not getting anywhere meanwhile you are suffering. See what your colonoscopy shows up and if everything is ok try going back to your Gp or changing GP for a second opinion. Hope you get the answers you are looking for.

Annie x

[Cat247 in reply to Annie897]

Thank you for your reply Annie. Since my post I decided I wasn't excepting all this so I phoned the surgeons secretary (again!) this time she actually answered. She was really lovely, she said the surgeon hasn't been there much recently so probably why I've not heard back. They should have still responded to me or let me know from my previous emails but not a lot I can do about that now! Anyway she got the endometriosis nurse to phone me who was extremely supportive and agreed I need to be seen in clinic and it's no acceptable that the bowel doc just told me I'd prob always have to live with pain. Why do we still go through this and get these responses from doctors! It's so upsetting and actually almost sent me into a depression but I've learnt over the years that you have to push and pester 😩. Anyway I'm now booked in to see the surgeon in Clinic on 27th April and I've got the colonoscopy at some point too. The nurse even gave me her contact numbers should I need any support or advice. It's amazing how much more positive you can feel and determined to get on even through the pain when you just have that bit of support and someone listening to you. Thanks again for your reply, it means a lot.xxx

[Annie897 in reply to Cat247]

Thats brilliant that you are finally getting some support and your on the right path im glad your feeling more positive about it now i no at times you can feel alone with it all but we are all here to talk about it or even vent your frustrations i hope it all works out for you and you get the answers you need.

Annie xx

[flyagaric]

Hi love, have you looked into endo diets? I've been struggling a LOT (for years, won't go into it here) with my stomach & digestive system, my lap was last October & I had a lot of endo and adhesions, bowel was stuck to pelvis and so on. I've been educating myself about endo diets & nutrition to manage symptoms (as I've been told my only other option is the coil which I don't want), not only is it fascinating but I've only been doing it for about 4 weeks and I'm already feeling the difference. It's never been advised by a medical professional and it's the only thing that's actually helped me, and I've been struggling so badly. I highly recommend looking into endo diets, it's so easy to underestimate the power of food! I bought a book called the Endometriosis Diet by Carolyn Levitt, it's brilliant. Word of warning though, when you start looking further into endo diets there's a lot of info telling you what NOT to eat - not a great deal of info regarding what you SHOULD eat. Don't lose hope because of this! I won't go into detail, but I've been in a really bad way for ages. Since tackling my diet, I take less painkillers, have more energy and even occasionally have a poo that isn't dreadful - and I'm only 4 weeks in! Taking my diet and endo management into my own hands has been the best thing I've done for my health so far in my journey.

Best of luck to you, I hope this helps and/or you find the best coping strategy for you. We're all different, but I couldn't recommend the endo diet more. X

[Cat247 in reply to flyagaric]

Thank you for your reply I really appreciate it. That does sound like something I should look into, I've often thought about it but put it off! I will certainly do some research and check out that book too. Thank you. Really pleased it's helping you.xx

[flyagaric in reply to Cat247]

I was exactly the same! I also didn't have much faith in the idea that diet change could help just this much, but it really is. Makes a lot of sense once you start reading into it as well. Sincerely hope you find a way to cope with this horrible disease, stay strong my fellow endo-sista! You got this. Xx

[Cat247 in reply to flyagaric]

Thank you. Awful we go through this, but I'm so greatful for all the support.xx