Waiting times for excision surgery and hy... - Endometriosis UK

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Waiting times for excision surgery and hysterectomy…

MsWhistledown profile image
24 Replies

Hello warriors!!

Can people tell me how long you have been waiting for surgery on the NHS please, whether that be for excision surgery, hysterectomy or both?

If you have had these surgeries already how long did it take you to finally have the surgery?

Many thanks.

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MsWhistledown profile image
MsWhistledown
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24 Replies
thebird1 profile image
thebird1

Good evening, I'm currently on an NHS waiting list for full pelvic clearance (65 week wait) and excision surgery.

MsWhistledown profile image
MsWhistledown in reply tothebird1

Oh wow! That’s a long wait. Thank you for sharing.

Qanngoth profile image
Qanngoth

I'm currently waiting for excision and hysterectomy. So far I've been waiting 12 months, but I was told at least 18 month wait!

MsWhistledown profile image
MsWhistledown in reply toQanngoth

Thank you.

Ru8yred profile image
Ru8yred

hey love, I waited just over a year in east London. Had mine on the 14th of sep at Homerton Hospital, with a weeks notice! Worth the wait but such shit we have to wait for something like this xx

MsWhistledown profile image
MsWhistledown in reply toRu8yred

It is! Very long waiting time when you’re suffering x

Katjw profile image
Katjw

hi, I waited 70 weeks but as soon as I went on the cancellation list, I got a call that afternoon and was in within a week! Definitely ask to be on the cancellation list x

MsWhistledown profile image
MsWhistledown in reply toKatjw

Thank you x

hobbitty profile image
hobbitty

I got put on the waiting list in early Feb, told it would be a 40 week wait - when I rang to ask where I was on the waiting list I got told it would be a year 😭😞

MsWhistledown profile image
MsWhistledown in reply tohobbitty

My goodness. Hopefully you’ll get in sooner maybe on a cancellation 🤞🤞

Loveneige profile image
Loveneige

I'm waiting for excision, hysterectomy and bowel op. Been waiting since May 23 😪

MsWhistledown profile image
MsWhistledown in reply toLoveneige

So sorry to hear this Loveneige. That’s an awful long time to be waiting! I hope your surgery happens soon! Wishing you all the best x

Ponymad9918 profile image
Ponymad9918 in reply toLoveneige

I'm the same, I've now been moved to another hospital and surgeon to see if that speeds the wait time up.

MsWhistledown profile image
MsWhistledown in reply toPonymad9918

That’s terrible! 😞

Faylen34 profile image
Faylen34

Hey so the waiting list for my surgery was 12 months for multi surgeon endo surgery (endo specialist colorectal and urologist). I was on the list for 4 months then had my surgery in October. My surgery time was cut so short for a couple reasons. I was hospitalised in July for couple weeks (my specialist was on annual leave for the weeks I was in sadly). Due to that I got a follow up with my specialist beginning of October and at that point I basically couldn't sit, couldn't walk, my partner came and helped me advocate and she admitted me onto a ward there and then, she had to basically fight to get an emergency theatre slot a couple days later and get the other surgeons on board and it happened as emergency surgery. I was incredibly lucky and put this down to getting another appointment as she was able to see how bad it had got. And also put it down to having a good endo specialist.When I was in hospital in July, i was told that the planned list is based on date order for my area regardless of symptoms or severity so i am lucky to have been able to have the exact surgery we planned with the specialist and surgeons as emergency.

The system is horrendous. If things keep getting worse as it did to me don't be afraid to go to hospital or beg for a second appointment. Don't go unheard x

MsWhistledown profile image
MsWhistledown in reply toFaylen34

I am so glad to hear you got seen faster. It sounds like you were in a horrendous state!

How are you doing now? I hope the surgery went well and you are feeling the benefits? x

Petitechili profile image
Petitechili

In N.Ireland I was told the wait list was 5 years for hysterectomy surgery on NHS. But the best way to find out is through your booking centre. They are able to give you accurate waiting times based on where you are being admitted to. It's really shocking. I ended up having to go privately and that took 9months waiting here. It's really dreadful . Good luck with your surgery x

MsWhistledown profile image
MsWhistledown in reply toPetitechili

Oh my goodness Petitechili! That is absolutely shocking!!!

I am asking because I am trying to make a definitive decision whether to go private for the Op. I have had such awful experiences with my local NHS hospital that I have not even had a proper gynaecology appointment with endo specialty. I think my mind is made up to have it done privately. I have already had relevant scan and consultation so it’s just a matter of getting the funds together to pay for it!

Bk27 profile image
Bk27

Unlike many others, I’ve had a relatively positive experience, my laparoscopic diagnosis and excision was only 14 weeks after my first gynaecology appointment, it was a 6 month wait for the first gynae appointment though from referral, so about 9 months in total xx

MsWhistledown profile image
MsWhistledown in reply toBk27

Thanks Bk27. Good to hear of a positive experience x

Chartolfrey profile image
Chartolfrey

Im waiting for hysterectomy in the south of england and been told 12-18 months

MsWhistledown profile image
MsWhistledown in reply toChartolfrey

Seems to be the normal waiting time for most. Really is a long time to wait!

G_Worth profile image
G_Worth

Good evening,

I had a laparoscopy (and cystectomy) in September 2020 was diagnosed with stage 4 endo and told I would need a second stage surgery to remove endo on my bowel. I'm still waiting for the 2nd stage.

I followed up with endo nurse in April 2022 as symptoms were worsening and I hadn't had a follow up since Jan 2021. I was swiftly booked in for an appointment in June 2022 to discuss second stage. I received an appointment for a pre op assessment for 11th November 2022. 24 hours before the appointment, on 10th November, I had a phone call to say my care was being transferred to Chelsea Westminster due to capacity issues at Northwick Park LNW.

During my initial consultation at Chelsea Westminster they said I would have surgery asap between 3-6 months but they wanted to do some due diligence as I hadn’t ever had an MRI. I had an MRI and CT scan in 2023 and also met with colorectal surgeon in August 2023.

It’s been deathly quiet since then but I finally had a pre op assessment this year on 27th July 2024, apparently only valid for 3 months so now seemingly expired...

I’ve been trying to chase up. I’ve contacted the endometriosis clinic, PALS and tried to speak to gynaecology surgical admissions but I can never seem to get through to the right person I need to speak to. Their phone option doesn’t work - I get stuck in a death wheel of choosing from 6 options; selecting option 5 and then being given the same 6 options to choose from. When I ask to be put through to gynaecology admission I’m advised to hold but the phone just rings out. I held for 34 mins in desperation last week!

I’ve now asked my GP to chase up on my behalf. Has anyone else experienced this long a wait?

My understanding is that I should have kept my place in the waiting list when I was transferred to Chelsea Westminster. Certainly hasn't happened for me. If I was supposed to have a pre op in November 2022 and then my care was transferred to another hospital due to capacity issues and I still haven't had surgery. It all seems so counter-productive.

I’ve checked the waiting list times on NHS website but as its multi-disciplinary its more complicated and I cannot make sense of it. some say 12 weeks, some say 20 weeks. If I was put on the waiting list in June 2022 I'm currently at 122 weeks and counting.

MsWhistledown profile image
MsWhistledown in reply toG_Worth

Oh my goodness!! That is absolutely awful. I am so sorry you have been left waiting for so long! It’s unacceptable. But feels like we have no power to change it! I do hope you hear something very soon. Wishing you all the best.

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