Waiting for surgery

[Loveneige]

Hi,I'm struggling at the moment. I'm waiting for surgery (full hysterectomy, bowel resection, endo excision).

I was told in May 23 it wouldn't be before a year. Then I was told July 24. I was then told they book monthly so ive been on the hope each month that it could be next month and getting by month by month.

I rang the waiting list number this week and have been told they are booked up to October but realistically not until next year.

I cant process this, I'm struggling in my job and want to leave but keep hanging on for surgery so at least I know I will be laid full pay for 8 weeks sick leave.

I'm on zoledax which is helping reduce some pain but now have all the menopause symptoms which I don't want.

I dont know how long I can go on like this.

I'm not sure what I'm asking. Maybe just some understanding and also is there any way I can push for surgery sooner. How bad do you have to be ro get help these days!

[Chartolfrey]

Im on the zoledex have beeen for 6 months and i was told 12-18 months but more like nearer the 18 months.Im being switched to the 3 monthly zoledex from end of this month and the pain has eased and only small flare ups bit menopause can be a pain. Are u taking hrt as im on tiberlone since jab 2 and the side effects better

[PeriMenoEndo]

hello, I just wanted to say you have my total sympathy.

Ive had overactive bladder, chronic uti, vulvodynia and adenomyosis pains that resemble child birth. I’ve had endo surgery this year (wasn’t what was needed) but been in this way for 3.5 years without a referral to the pain clinic. Had to leave four jobs in this time due to pain and subsequent mental health, sell my house and move out of the city that was my home for 17 years.

Hang in there, max out on self care and distraction, check out Curable, and try and get as much movement into your days as you can.

Once you get the help you need and you’ve healed up physically channel that anger into some campaigning- we need equal healthcare and to have our pain taken seriously!

Wishing you all the best and it sucks that you’re not alone, but you’re not, you have support here!

[MrsPaddingtonBear]

Hello

I had a hysterectomy last October after 20 years of problems. I had to have emergency bowel surgery as my bowel was stuck to my womb. My ovaries were also stuck and I had multiple cysts. I had colostomy surgery and a colostomy bag fitted. This was temporary I was told. They said after 3-6 months it would be reversed. Here we are almost a year later and no surgery. According to the nhs app I’m waiting for an appointment and the wait is 20 weeks plus. I was put on the list in January. I was told clinical need comes first which obviously is what you’d expect. Last time I rang abut the waiting time I got a really rude response from the booking clerk who said Iwill call YOU and tell YOU when your surgery is two weeks before. So basically it was shut up and wait. Well I didn’t shut up I complained about her attitude. Are you on the hrt add back therapy? I was given hrt patches and they are great. Still on them for 5 years. Rarely have any hot flushes. Best of luck.