"The lack of communication is so disheartening"

I was diagnosed with endometriosis in 2011, and have had 3 surgeries. Since having my youngest child (just turned 3), I have been suffering enormously. I’ve lost count of the number of horrendous episodes I’ve had, many of which have resulted in hospital visits, and approx 5 admissions.

I had an appointment with a consultant during my last pregnancy, and since then, despite my many A&E visits (all of which have been either GP or 111 referrals), every gynae/endo clinic appointment has been cancelled. During an admission, 18 months ago, I was told by the consultant on duty on the ward, that I would need surgery in the future.

After 2 consecutive admissions in November last year, I was informed that the endo was much more apparent, that my bowel and uterus were fused, as was my right ovary.

I finally saw an endo doctor at an appointment in January, where they apologised for the fact that I had slipped through the system and that I should’ve been seen sooner. Options were discussed, and I made my feelings very clear on what I want the outcome to be, essentially a full hysterectomy. 

We agreed on 6 months of zoladex injections, with a review after the 6 months to ensure my body can cope with menopause, and to allow a MDT meeting to take place. 

I’ve received a letter notifying me that the meeting has happened. But I’ve not been added to a surgery list, nor had an appointment made for a review. 

I’d hoped that I’d have been added to the surgery list, no matter my reaction to the current treatment, which I could’ve been removed from if necessary, but would shorten my waiting time (given I was told in November 2023 that I would need surgery). 

Zoladex is a short term solution, given that it is only feasible for 6 months for endo treatment. 

The lack of communication is so disheartening, especially given that I’ve had nearly 2 years of a constant battle, and now experiencing not only a chemical menopause, but the other side effects, with no end in sight. All whilst trying to maintain a high pressure, active, full time job, a home with 2 young children, and a marriage, of which is under strain due to the lack of planning and communication in regards to mine and my family's future.