Surgery waiting time

[1purplepiano]

I've just been told that I'll be waiting over a year for surgery for my rectovaginal endo as a Multidisciplinary team are required. I was expecting some kind of waiting time but not that long. I feel very deflated

[Msunited Moderator Moderator]

Hi 1purplepiano,

Feeling this way after diagnosis is really understandable, especially at this stage of your journey. It may feel like you are being left to deal with it on your own without any real resolution until then.

There are women who have shared similar stories than you have here

endometriosis-uk.org/person...

You might find listening in on an upcoming Webinar helpful. It will be lead by two nurses who'll discuss symptoms, treatment and pain management here

endometriosis-uk.org/civicr...

Here's some clinical information from Endometriosis uk

endometriosis-uk.org/treatm...

I hope that you will be seen to sooner than expected, so you can have a positive road to recovery.

All the best

[1purplepiano in reply to Msunited]

Thank you for your reply and support. I'll have a look over the stories. That webinar sounds really interesting so I'll give it a watch

[Msunited Moderator Moderator in reply to 1purplepiano]

Youre welcome!

[Bumblebee11]

I empathise wholeheartedly lovely.I was told 12 weeks from my referral (June last year). My op is scheduled for October this year.

I was really angry and deflated at first honestly. But now I am just on the countdown and taking every single flare up as they come. It is so difficult being an endo warrior and sometimes you can feel so unsupported. But I promise you are not alone. And hopefully this year will go quickly for you.

Not that we should literally have to wish a year of our lives away..

I wish you plenty of pain free moments! X

[1purplepiano in reply to Bumblebee11]

Thank you for your reply. It honestly feels like we're being punished for something we can't control. I asked if I could speak to someone about pain management and was told that there is a long waiting list for that as well. I'm going to try a new medication and see how that goes.I hope all goes well with your surgery in October and also hope you have plenty of pain free moments.

Take care xx

[Raven23]

I have been told it's a year wait for my hysterectomy too 😔 it's completely deflating. I was also told by my doctor I would have a biopsy done 6 weeks after our appoinment, I never got a letter so I phoned and told there is a wait for that too and they'll get to me when they can 🤷🏻‍♀️ it's been 2 months...

[1purplepiano in reply to Raven23]

Hi, thanks for your reply. I'm sorry to hear you are waiting as well. It is really difficult. I feel like we are always waiting on something. I hope its not too much longer before you hear something. I've been referred for a flexible sigmoidoscopy as well but I can't imagine that being anytime soon. It's hard not to lose hope. Take care xx

[Raven23 in reply to 1purplepiano]

I just read that you are 29, me too! I hope you arent waiting too long, I dont know how to help apart from solidarity 💜 I get it x

[1purplepiano in reply to Raven23]

Oh great ! It's nice to speak to somebody the same age as me. Are you from Scotland by any chance ? Yeah it's difficult to help but just even speaking with somebody who understands is so helpful so thank you. If you don't mind me asking, how are you coping with getting a hysterectomy ? (Apart from the long waiting time of course). My consultant mentioned that he believes I also have adenomyosis and will always experience pain with that so a hysterectomy might be something required in future xx

[Raven23 in reply to 1purplepiano]

It really is nice! No I'm from the midlands. I dont mind you asking at all. I was diagnosed with adenomyosis at the start of the year (had endo surgery 2 years ago but still had problems). I have had 2 children and am happy so I think that helped the decision. I'm still anxious as I dont know anyone in person that has experienced it as I'm also having my cervix removed. But I know it's the right decision for me, I can attempt more of a normal life. It does feel very finally though.Happy to chat xx

[1purplepiano in reply to Raven23]

It's such a big decision and I'm glad you feel it's the right decision for you. I feel the same way about my surgery and I'm nervous about risks etc but I'm going with the mindset that I won't know until I try it. I just know that I can't continue living with the continuous pain so I have to try everything I can. I don't have any children yet and its something my fiance and I planned would happen in future. I'm more stressed about it now that I have adenomyosis. It's certainly a lot to worry about. Thank you. Same here if you ever want to talk xx

[Chartolfrey]

I was told 12-18 months for my hysterectomy and now been told 12-15.Ive got a 2nd mri at end of month then to mdt again and they are pushing for may. Sorry ur feeling like this its a long wait

[1purplepiano in reply to Chartolfrey]

It seems like there are so many people waiting. It helps knowing I'm not going through it alone. I'm glad yours has been brought forward. I'll keep my fingers crossed that it happens in May for you ! xx

[Chartolfrey in reply to 1purplepiano]

Thankyou. I have been waiting nearly a year and ive been on tge zoledex for a year now.Its a long wait but your not alone. Best advice is keep pushing your gynae, gp, consultant

[1purplepiano in reply to Chartolfrey]

I will do, thank you. I have also asked for them to refer me to a pain management specialist and to do another scan but they again said there are long waiting lists. It's terrible. I've never been on zoledex but I've been on decapeptyl sr for 6 months and they seem happy enough to keep me on it for up to 2 years

[Chartolfrey in reply to 1purplepiano]

They are happy for me to stay on zoledex till surgery. I had a mri march last year and in january i asked my consultant for another at 12 months to see if the zoledex is helping. He refered me 16th jan and ive got a mri on 25th march