Colorectal endo lap- share experiences please?

[G3miniStar]

Hi everyone, so I finally went private after months and months of waiting on the NHS. I've been told by my new consultant that he thinks another laparoscopy should be performed, and he is likely to have space in his clinic in November. I have stage four endo with my bowel and uterus stuck together, so this time the lap will also involve a colorectal specialist during excision. I understand this can be a really complicated surgery and up three days in hospital post-op. I'm really scared, I've heard that some patients end up with stoma, possibly permanently, and other severe bowel problems. Would anyone be able to share their experiences for those who have had this done please? Thank you x

[Lindle]

Is this being done in a private endo centre as it should be?

[G3miniStar in reply to Lindle]

It's being done at a private hospital under (I'm told) the best endo surgeon in my county. Apparently he either does it himself or is sometimes assisted by a colorectal surgeon. I know it does make a difference, but I would hope it's something he does often.

[Lindle in reply to G3miniStar]

Just be sure the same multidisciplinary team standards are applied.

[G3miniStar in reply to Lindle]

How would I know if they're applied?

[Lindle in reply to G3miniStar]

You have to ask really. On the NHS it is a requirement that severe endo is only treated in tertiary care in a specialist endo centre where there is a multidisciplinary team to include 2 gynaecologists working together plus colorectal /urology as required. You must have at least one of the gynecologists with advanced excision skills for severe disease and the colorectal/urologists must also have a special interest in endo. It is hard with such long delays in the centres but you mustn't be disadvantaged in any way going private as compared with how you would have expected to be treated in a centre on the NHS.

[AlexMoomin in reply to Lindle]

Try not to be scared; if the surgery is performed by an experienced team you’ll be in good hands. I was also worried about a stoma bag and had quite severe bowel endometriosis, but thankfully I didn’t need one. I had a 5 night stay at a well-renowned NHS hospital that has a specialty endometriosis centre and I was very well cared for.

For my most complex surgery, I had two senior endometriosis surgeons present, a colorectal and a urology specialist. In fact, the surgery was delayed for a time to ensure the colorectal surgeon was available. This was a 7+ hour surgery that required more extensive bowel work than initially thought.

I agree with at G3miniStar completely. Please make sure you do some research into the surgeon you refer to and the same for the other surgeons/medical professionals who will be treating you as part of the multidisciplinary team. A number of leading NHS endometriosis surgeons also work privately. An NHS surgeon who specialises in endometriosis will be performing surgeries like yours on a regular basis which some private surgeons don’t always do. Often the best care is actually with a good NHS team who have a number of specialists available, vast experience and high levels of accountability.

Don’t be afraid to ask lots of questions and make sure you do a lot of research. Waiting is awful and painful, I agree (I’m waiting for a hysterectomy at the moment), but having the best possible care for you is the most important thing. Sometimes the best care is actually an experienced NHS team who perform these surgeries regularly.

If you have any more questions, please ask! I’m not a medical professional but I’ve had years of procedures for endometriosis and have gone private in the past but my major surgeries were all NHS; when I went private it was with the same NHS team.

I wish you all the best.

[G3miniStar in reply to AlexMoomin]

Hiya, thank you so much for your reply. I'm really pleased you had a positive experience! I wouldn't have hesitated to stay with the NHS but I was told it would be a good 18-month wait and we're thinking of trying for children soon so I wanted to move things forward. But I've gone privately with the surgeon who is head of the BSGE endo centre in Kent so I hope I've chosen correctly.

I will definitely ask about who my team will be. I know my self-pay price will depend on how many other specialists are in the room so it's important to know.

Do you mind me asking AlexMoomin , how long was your colorectal recovery? I think my pain was ok after my last lap, but that was a general endo one, would you say recovery is harder?

Thank you again!

[Hidden]

Hi Thankyou for writing this post. I’m having the same Op next week, so it will be good to see other peoples experiences. Obviously I have no more information at the moment for you but good luck to you. Remember the end goal. I’ve been told of the possibility of a stoma but if that means I’m pain free and back to my normal self then I’m happy to have it. Please keep us posted on how you’re doing.

[G3miniStar in reply to Hidden]

Hiya, best of luck with your op next week!! Sending best wishes and positive feelings your way. Do let me/us know how it goes when you're well enough? xx