NHS Waiting List

[Emmi24]

Hi,

I was diagnosed with endometriosis in 2015 and after the diagnostic laparoscopy have managed my symptoms with the mirena, non-stop Norgeston, an endo diet and exercise.

Due to my symptoms steadily increasing at the beginning of this year, I had a scan and appointment in June with my consultant who advised that I had endometriomas on both ovaries that were approx. 5cm each. This was a surprise to my consultant as because my endo was classed as 'dormant' because I don't have periods anymore, he didn't expect endometriomas to have developed. A laparoscopic bi-lateral ovarian cystecomy, replacement mirena, and excision of any other endometriosis present was advised.

I was told at the time that the waiting list for surgery wasn't sitting within expected time frames but I only found out yesterday that it would look likely for me not to have my surgery until March 2018. That would be a 9 month wait. I am really worried about this as we've booked for a once in a lifetime trip to Japan at the start of May and I know from my diagnostic lap that it took me a good 4 weeks go to feel better, and after having the first mirena coil fitted it took a few months before my symptoms were under control again.

Has anyone had experience of such a long waiting list for surgery and how did you cope? I've added myself to the short notice waiting list but there has been no movement on that from June until now so I'm not particularly hopeful that will get me seen much quicker.

Also, have people experienced endometriomas continuing to grow, despite not have periods?

Any advice or comments gratefully received - always helpful to know how others manage with this endo rollercoaster ride!

Best wishes, E x

[LittleG22]

Have you tried ringing your consultant's secretary? I wouldn't mention the holiday but maybe if you know how fast it is growing and you are scared that by the time they operate ....blah blah. she can get you in touch with the department responsible for booking surgery. With me the person in charge was going to book me in for 6 months time but because of my circumstances I needed it in 3 or 4 months. The message hadn't got from the consultant to her but when I rang, she spoke to him, confirmed and booked me in for 4 months.

I suppose the bottom line is that if they don't have space, they don't have space but sometimes they have cancellations.

It's very depressing that we can do our best to control it and it can still come back. I went through hell in 2017 and then 4 months after my second surgery and insertion of mirena....4cm cyst again. Devastating. I'm on Cerazette as well now.

I hope you get some progress, it's hard work navigating the NHS bureaucracy. My experience of my hospital is that the clinical staff have been good, on the whole. some of the admin staff however are rude, useless and unhelpful. Apart from my consultant's secretary, she was great!