How long did you have to wait between dia... - Endometriosis UK

Endometriosis UK
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How long did you have to wait between diagnosis and excision of endo?

lizzyxx
lizzyxx
22 Replies

I was diagnosed with stage 3 endo on 18th june, had my pre op for excision on 28th june. I rang up today and was told I'll be waiting until October the earliest for my surgery, how long did you have to wait for excision surgery? Thanks x

22 Replies
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Worriedwarrior

Hi lizzyxx

I've not had my surgery as yet, but my pre op is next week, 26th July and surgery is 6th August. They've done your pre op awfully early if you're not yet booked in with a surgery date. A lot could change in that time. I really hope you don't have to wait that long x

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Jess96

My surgery is on the 6th August too! 😁

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Worriedwarrior

Oh really?! Are you nervous? I'm very nervous, I hate the waiting around!!

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Jess96

Yeah I'm nervous. I keep momentarily forgetting, and then I suddenly remember and I get overwhelmed with nerves. I had my pre-op a few days ago, so it's made it even more real for me. I hate waiting too! Sometimes I just think that I want to get it over and done with. And then other times I want to chicken out and cancel it. I think the waiting makes it worse.

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Worriedwarrior

I understand that completely. Days like this morning where I can't move my left leg and my hip feels like it's being drilled through I'm literally screaming "get this out of me now" then come bed time I'm thinking "I can't go through with it" 🙄🙈 are you have laparoscopic or laparotomy? Are you in the UK?

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Jess96

I messaged you 🙂

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lizzyxx

They originally told me 6 weeks and now it's 14-19, the thought of having to wait so long is awful as my symptoms get worse with every period I have. I thought once I'd been diagnosed they'd want to remove it sooner rather than later especially with him saying it was borderline stage 4. The joys of endometriosis x

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Worriedwarrior

Wow, that's just ridiculous!! Bless your heart, I'd be kicking off at my GP!! Perhaps it's best worth calling back to them and saying you simply cannot wait that long?

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lizzyxx

I've emailed my consultants secretary and she said she'd print my email and leave a copy on his desk, it's worth a shot lol x

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Worriedwarrior

Definitely!! I'll keep everything crossed you get seen sooner. Let us know x

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lizzyxx

Thank you ☺ x

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farahziya

Ahh nooo :(

I don't know how long the usual wait times are, I'd be interested.

I had diagnosis and excision of endo all in one, including biopsises and hysteroscopy, but it was private. My specialist doesn't like the idea of waiting as you're displaying symptoms so obviously need to get things sorted and mended as soon as possible.

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lizzyxx
lizzyxx
in reply to farahziya

I just wish he could have removed it during my first lap but cos it was so extensive he didn't remove any so now I'm back to waiting again x

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princessk09

Hey I can’t really say much but I have my lap in 2 weeks and my surgeon said he will remove any endo found on the same day

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lizzyxx
lizzyxx
in reply to princessk09

He did tell me if it wasn't too bad he could remove it during my first lap but it was too extensive so he didn't remove any of it x

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Reachforthestars

I had my consultant appointment in February, still waiting for a date for lap!! I'm waiting on two surgical teams though, gynae and colorectal so I think that's proving a tad tricky for them.

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farahziya

that can be tricky.

that's the same as my one i'm going for tomorrow.

Get back in touch to chase it up; sometimes one team forgets to update the other so they're just waiting!

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Reachforthestars

I called them last week but no date yet. Also put myself on the cancellation list in the hope that might be quicker!

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Samid76

I had this problem, my consultant put me on the urgent list and said I’d have my op within 8 weeks, that was on the 18th June. I had my pre op the same day as my consultant appt. after not hearing anything for a couple of weeks I chased up the Day surgery admissions and got told that due to the issues they were having with appointments I would be waiting up to 30 weeks for my surgery. I contacted my consultants secretary as I had fertility appointments booked for later in July as well, she managed to get me booked in for surgery on the 17th July... although this was cancelled on the day of my surgery which was really annoying. I am now booked in again for the 22nd August and am terrified at what they are going to do and what they’ll find. My hormones seem to have been affected massively which is now making my cycle much longer and to date now seem to have completely missed a period it’s very upsetting particularly as we want to have a baby, keep chasing them up they will push your date through sooner x

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lizzyxx
lizzyxx
in reply to Samid76

I didn't mind waiting longer than the 6 weeks but it's the fact they tell you one thing then change it numerous times, there's only 3 people ahead of me on the list but cos it's major surgery they said they don't do them as often as minor ones as it takes up more time in theatre. It's ridiculous, good luck for your op x

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DeeEndo

Hi lizzyxx, the below is from the NHS website, if they do not see you within this window I believe they get fined.

The maximum waiting time for non-urgent consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter. However, your right to an 18-week waiting time does not apply if: you choose to wait longer. Hope that helps x

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lizzyxx

Thank you x

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