Diagnostic Lap

[Emylou1]

Hi all

I was given a presumptive diagnosis of endometriosis in 2020 after having symptoms for years that I normalised. I did have a USS in 1995 which was normal so just thought painful heavy periods was something I had to put up with.

I have since had a hysteroscopy and the Mirena coil fitted in 2021 which helped with the heavy bleeding but I now have irregular bleeding. It didn't improve symptoms of pain or the urinary or bowel symptoms.

Due to bowel symptoms I then had a sigmoidoscopy...so painful with gas and air, then needed a colonoscopy which they initially thought I had IBD because of ulcers and nodules seen but all biopsies came back negative. I also had a endoscopy as well. Also had a mri of spine because of neurological pain.

My symptoms have not improved and so I had a pelvic mri in the summer and endometriosis in the rectovaginal septum and on the uterosacral ligament as seen, so given a diagnosis of DIE.

I have now been told I need a diagnostic lap before any treatment can be planned, does this sound right? Or should they be able to plan surgery with the MRI images. I'm hoping for a complete hysterectomy.

[Pelvic_pain]

Obviously all cases are different, but my understanding was that a very good radiologist that is trained to spot endo can help identify where & how deep the nodules are to assist with planning for surgery. Personally, I wouldn't want a diagnostic surgery & then further surgery to remove the endometriosis. If you have DIE, you really need to be seen at an endometriosis centre with a multidisciplinary team. I would certainly make sure you are under 1. If you Google BSGE centres, you will be able to look up all the centres in the country.

[Emylou1 in reply to Pelvic_pain]

Thank you for the reply. I really don't want the diagnostic lap I just want treatment but not sure if I can decline it. The nurse specialist said if I choose to go on the hysterectomy waiting list and when they open me up it's too much of a mess they will close me back up.

I guess they want to do it to confirm it's endo and plan what they need to do but if they are not sure now but there's something on the MRI is there a possibility it's something other than endometriosis? I'm just exhausted by it all.

I've checked and my consultant is BGSE accredited.

[Hannah818 in reply to Emylou1]

Is there a way to ask the consultant, sometimes through his or her secretary

[Pelvic_pain in reply to Emylou1]

Glad your consultant is familiar with BSGE centres. I would ask if there is still further scanning/MRI they can do. I know it's not always possible, but worth checking. If you prefer alternative treatment, ask to try alternatives first, but make sure you ask them to explain all the pros and cons to you so you can make as informed a choice as possible.