help advice on treatment route - nhs lap stage 4+

[Els123456]

Hi there,

I have been diagnosed with Endo a few weeks ago now with 2 cysts and ‘sticking’ kissing ovaries and bowel symptoms for years, currently in a lot of pain! Although pill is helping a bit… reading some posts on here all really helpful - I had no idea about this access to specialist treatment via bsge accredited centres.. I also have bowel symptoms and have 2 endometriomas. I’m being booked in for an urgent lap but am now concerned that they aren’t following the right steps due to the size of waiting lists.. for example, I had a phone call with a nurse about procedures for the surgery before meeting again with the consultant or having another scan booked in (which my consultant discussed with me at my first appointment).

My consultant is a specialist in cyst removal and other gyney issues. Not sure of the best course on any of this, the nhs is such a maze. The other day I tried calling the hospital and ended up calling 5 different extensions to get through to the right team and still didn’t reach them… also if I go back through my gp for another referral I might be waiting even longer for an op? Is that right? I’m trying not to pin too much hope on the operation but really hoping it can help with pain as cysts are killing me!

Gosh honestly this support network is such a god send I’m feeling increasingly alone with this thing after years of not knowing what was wrong.. a bit of a double edged sword. I’m trying not to let myself get too caught up in it all as seems like it could become a full time job in itself and I have no idea what to look for on the nhs to show it’s a good service…

[Curious123]

Hi. If you know which hospital you have been referred to you can see if they have an accredited BSGE endometriosis centre there. They have contact details usually so you could try and reach out to the endometriosis specialist nurse to confirm you are in the right part of the gynae team with the endometriosis specialists.

bsge.org.uk/centre/category...

Any cyst removal surgery is likely to lower your ovarian reserve and there is still always a risk of recurrence. I am not sure of your age or fertility desires but this is definitely a question worth asking about and if they would offer you an ovarian reserve marker blood test - AMH. The first 6 months post surgery also provide the greatest chance of natural conception. You could also ask them to test r Fallopian tubes are patent (clear/open and working) while you have the laparoscopy.

Good luck with it all.

[Els123456 in reply to Curious123]

Thank you so much for your reply! I looked my hospital up and I don’t think it is listed on there, although it’s a bit confusing as I believe my hospital is part of a trust and part of the trust it’s part of I can see on there! I think I am with the Endo specialists I believe my consultant seemed very expert as found a cyst the previous ultrasound scanner missed!! I’m not sure how they could have missed a cyst right next to the first that’s the same size but perhaps non- specialists don’t know what they are looking for!

I’m nearly 30 and do think my fertility is still ok. Not looking to have children at the moment but perhaps a few years in the future!

Thanks so much for all your advice - it’s a godsend

[Curious123 in reply to Els123456]

If you do want children in the future then I would definitely ask them the question about what potential impact the surgery may have on your fertility, especially operating on the ovaries. Also worth considering egg freezing /embryo freezing although not cheap, depending on what they say. Good luck!