Help need advice endo

[Hm1987]

Hi just wanted some advice I was diagnosed with endometriosis this year after 2 decades of suffering and medical gaslighting I’m now 39 with 3 kids no plan to have more. I’ve been offered surgery which I want as the pill alone doesn’t help so when I spoke with my consultant at my last appointment the option was I could wait for the excision specialist waitlist for him is approx 1 year to 18 months the second option was a gynaecologist doing the surgery with the risk he may not get it all and I might require a second surgery I kind of agreed to have the gynae so I could get it done quicker I was on the back end of a really bad flare and to be honest I didn’t know what I know now I’ve done research I’m following a lot of influencers with endo and read up to date nhs information as well as some medical journals they all say don’t have a normal gyne perform the procedure you really need an excision specialist waitlist. So the problem i have is I had a pre-op that was half done I needed a 48 hour heart tape as when I have flares I get palpatations and I was still waiting for an appointment for that and they won’t do the surgery until the results come back I got the results back a week ago . I keep getting this nagging feeling I should wait for the excision specialist I’ve already waited 20 years what another year …. I’m thinking of speaking to my consultant next week and saying can I wait for the specialist o don’t want to wake up from surgery to be told we need to do another so you have to see a specialist anyway. Oh fyi I was diagnosed via mri I have bilateral endometriomas . Has anyone been through this surgery is it worth waiting with the hopes of a better outcome ?

I’m sorry, sounds stressful. Not me but a relative with endo I believe would agree wait for the specialist. My understanding is the likelihood of it growing back if not all gone, and the risk of post surgical complications increasing with subsequent surgeries. I understand deciding to wait will feel really daunting too though

I would have a further discussion with the consultant and see if you can see the excision specialist earlier even if only for an initial consultation. You do not want to have any more surgery than you absolutely need.

bilateral endometriomas meanyou have these on both ovaries. These need careful monitoring.

So today I finally emailed my consultant I’m fortunate that she’s a work colleague and so is the endo specialist I work in maternity and they are all obs/gynae consultants that I work with they are actually the reason I got diagnosed as my gp kept sending me away after my 4th visit to A&E last year the consultant spotted me in A&E and it went from there they got me an mri and took control of my care as my gp wouldn’t refer me I’ve been incredibly lucky in that sense it still took 2 decades but at least I’m finally getting treatment. Anyway sorry went off course their I emailed her today and she actually said she was proud of me for advocating for myself and will sort the appointment with the specialist and I will be added to his list there after I’m so bloody relieved thank you for taking the time to comment I felt a bit ungrateful as they got me in so quickly and surgery was gonna take place in September but she said I had nothing to feel ungrateful about and she supports this decision for me .

Yes I will ask while I’m waiting for the surgery with the specialist if they will be monitoring in that time at the moment they are quite small well back in November they were my left one was 1.4cm and the right 1.6cm so I’m hoping they won’t go too crazy in that time .