Excision Surgery (Endo on Bowel)

[gannb92]

Hi ladies,

It's been a little while since I posted anything on here I know! But I have tried to keep up by reading others posts when I could. I last spoke about having the MRI scan which was the beginning of May, waiting for an appointment with the Endo specialist and praying that it was all good news. Long story short, it's not. In fact the news kind of sucks! Basically my appointment with the specialist kept getting pushed back and back, which unfortunately is no use to me right now as I was intending on leaving the country in September. (I have a temporary two year travel and work visa for Canada). Luckily the consultant was able to quickly look at my MRI results and in a cruel twist of fate I've been told the endometriosis is quite severe (all attached to my bowel which may or may not need a small resection itself) and needs surgery in order to remove it... Fantastic. In even worse news the wait to have it done on the NHS is NINE MONTHS!!! I kid you not. So obviously in my current situation I don't have nine months to sit around and wait (not that I would want to anyway) so I'm opting to have it done private. I have a consultation with the specialist this Thursday to discuss everything properly and hopefully get a date for my surgery (second one in 6 months yippee).

Has anyone else gone private for this operation? Or even if you had it done on the NHS, any insight would be helpful I have no idea how it will differ from my previous op - which was a cyst removal and laprascopy to confirm endo.

Thank you for reading, I know I babble on way too long in these things 😂 xx

[Kittykat8989]

Hey,

I had endo removed from my bowel. I had a large nodule between bowel and womb. Also had a layer shaved off my bowel. I was forewarned I may need a bag or resection but it never came to that luckily .

My lap was about 2 hours and I was in hospital for 3 nights. I don’t think I could go through it again and hate the thought that endo can grow back.

I mind excised so fingers crossed!

Katie x

[gannb92 in reply to Kittykat8989]

Thanks for your reply!! That sounds very similar to what I've been told mine is like. I'm praying mine doesn't come to that either! I know we have to be forewarned of the worst possible outcomes, however unlikely, but part of me just wishes I didn't know. Then I couldn't overthink things haha.

No I don't blame you, it doesn't sound nice at all. I'll admit I'm not exactly looking forward to it. Oh god tell me about it, it's terrifying that it can come back. I'm already stressing about needing more operations in the future and I haven't even got this one out of the way yet!!

I hope you're doing okay now, glad it went well for you 😊 Thank you for sharing! x

[Flydragon9]

Hi I am recovering from a hysterectomy and bowel reparation at the minute. I was on the NHS urgent list which was 74 weeks. In danger of losing my job, and having used most of my annual leave each month, my parents paid for my surgery privately, I was very lucky. My bowel was badly damaged by the endo and surgeon advised that he couldn't get all of the endo or I would have had to have a stoma bag. That was frightening. If you can look into going privately then do so. For your future health. Good luck with this.

[gannb92 in reply to Flydragon9]

Thank you for replying. It's madness isn't it how long the waiting lists are!! And we have to try and struggle through work and daily life all that time. I'm glad you were able to get it done! That does sound terrifying, I'm slightly worried that's what the specialist will warn me of when I see him tomorrow.

Hopefully it will all work out and I'll be able to get it done sooner rather than later! Thank you so much I hope you're doing well now! x

[Flydragon9 in reply to gannb92]

Thank you, so far so good. Its horrifying hearing some stories on this forum. Women are going to be left disabled from this condition. Its very frightening. Good luck on your journey with this!

[Ash24601 in reply to Flydragon9]

This sounds like my story last year.

They found endo on the left and right side of my bowel (also on a major blood vessel) and wouldn’t not remove it without a colorectal surgeon. I ended up waiting another year! I was just made redundant so holding down a new job was hell on top of regular obstructions and hardly able to eat.

I had my op last August but it’s now given me issues on my right side (previously I only noticed the left). I know I had most the endo removed on the right and the pain comes out of no where and forces me to the floor for hours. Has anyone else experienced this?

They think it may be scar tissue and are going to take a look but they are adamant I won’t need a bag.

[Flydragon9 in reply to Ash24601]

The problem is that our cure can often just cause different issues such as adhesions. Try and take good oils into your diet such as flaxseed oil. They can help lubricate tissue, maybe ease some pain.

[Willow16 in reply to Flydragon9]

What were your symptoms?

[Tillyfloss]

hi. This disease sends us on a roller coaster we can't get off🙉. Has the surgeon said he can do it privately? I was under an excellent bsge specialist who we saw privately and hoped to get the surgery but he said as my endometriosis was so server it wouldn't be safe to operate in the private hospital so I waited 2 months and had surgery on his nhs list, he was right was even worse than they thought and is all over my bowel / bladder.

hope they can get you sorted out. Xx

[gannb92 in reply to Tillyfloss]

Tell me about it! Doesn't it just, I feel like it's one thing after the other ha. Well I've got the consultation with him tomorrow evening so that will be something I'll check! Although from what has been discussed so far it sounds to me like it could still be done, albeit privately, at the same hospital as if it were on the NHS. I'm not 100% sure on this yet, but I also currently work in said hospital and apparently we do actually do private surgery's there, who knew. I'm just keeping my fingers crossed for it all to go to plan, as I'm not really able to wait with hopefully leaving the country to go travelling soon!

Thank you for your advice I'm definitely going to double check the hospital and everything now! I hope you're doing well, and thanks me too ha xx

[MMB89]

Hey!

I had endo on my bowel as well and have experience of both private and NHS. All I will say is if you do go private please ensure they are a BGSE accredited surgeon and ideally have it done privately but a BGSE accredited hospital. I stupidly wanted my surgery doing ASAP and now have permanent damage due to choosing a surgeon that wasn't accredited. I then ended up having to have surgery again to fix and remove what the other surgeon missed. The NHS care has been amazing compared to private in terms of after care and access to the endo nurse at the BGSE centre I am now under the care of. The last private surgery I had, I was kicked out of the hospital at 1:30am after coming out of surgery at 10pm in a very bad way because I didn't have enough money on my credit card to cover an overnight stay.

Best wishes and hope it goes well for you xxx

[maximusprime]

Hi did you end up going private then?

[HikerGirl]

Would love an update, as someone facing a very similar situation (though the wait is more like a year now) x