Long waiting list for surgery : Hi All, I... - Endometriosis UK

Endometriosis UK

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Long waiting list for surgery

littlemixer18 profile image

Hi All,

I’ve been on the laparoscopy waiting list since January 2021 and just wanted to know how long any of you have had to wait to receive surgery after waiting. How long was your wait?

Thanks

20 Replies

Hi,

I was hospitalised and placed on IV antibiotics due to sepsis caused by cyst leakage in June. I was diagnosed with stage 4 endo, adeno and kissing ovaries with 2 large endometriomas at the time (i had no idea, altough it totally makes sense now). I was told i need an urgent radical hystorectomy and excision of endo tissue.

I have recently found out that it will be at least 6 months before i even see my surgeon, let alone actually have the surgery.

It may be a different story depending on where you live. I share your frustration

I went private in the end as was made aware that the waiting list was long - in May 2021 I was told it would be a few months to see a consultant, and then potentially 9-12 months for surgery (although that would change based on cancellations etc)

Do you mind me asking how much all together it was privately as I’m thinking of doing the same?

Of course I don't mind - so far, with the invoices that gave been paid, it's been almost £3,000 (which is a bit lower than I'd thought it would be). That was at a hospital that's part of the BMI group.

I need further treatment so it will increase, but everything is invoiced as it takes place so its easy to keep track.

lola2322 profile image
lola2322 in reply to EndoSuckss

Hi there, I’m also considering going privately, do you mind if I ask which hospital this was and we’re they endo specialists?

EndoSuckss profile image
EndoSuckss in reply to lola2322

Hi! I don't think I can name specific hospitals or consultants on here, plus if you don't live in the same area as me then I don't think it would help anyway!

But I used the BMI group of hospitals - my consultant specialises in endo alongside other areas which has come in handy during treatment.

I would highly recommend, if youre considering private treatment, seeing which hospital groups you have in your area and looking online to see who works for them and what they specialise in.

I actually had a consultation with one lady who was also a specialist, but based on my symptoms and what I said referred me to someone else because she'd be better suited for the surgery. So I'd very much recommend private treatment if you can do it!

Hi, I was put on the waiting list in Nov 2020 and had my surgery in June 2021 but this was after a LOT of pestering from me x

I am in East Kent and was told it was 18mths the waiting list in my area. Fortunately for me I have private medical now and going to have a second opinion anyway before anyone operates on me!

I waited eight months just for an appointment with a nurse to take my medical history. I can imagine how long a surgery waitlist would be! Good luck!

Totally understand your frustration. Each hospital and each patient will be different. The wait times for complex cases (that need more than one surgeon) are longer than non complex. I've been on my Gynaecologists list since August 2020 and my colorectal surgeons list since March 2021 and neither have given me a date yet.

Is it general gynaecologist doing the surgery or an endo specialist? If I were you I would regularly contact them (gynae admissions team) to ask if there's a cancellation. You may get bumped up the list. My friend did that and got an op date within 3 months last year.

In the meantime there are many natural things that work for endo pain if you want the info send me a private message. Happy to share my research.

Take care

Hi,

Thanks for your reply. I believe the surgery will be done by a general gynaecologist and I will definitely give the admissions team a call to see if there is anything they can do. Thank you for the advice. Xxx

Hello.I spoke to my GP about the pain etc in Jan. she put a referral for ultrasound and I was seen 6 weeks later. I had a repeat ultrasound 6 weeks after that. It was then a 3 month wait to speak to consultant but he then put me in urgent list for laparoscopy. My appt was set for 11th Aug. They did another ultrasound two weeks before that and as a result of their findings added a hysteroscopy to the list for 11th. My surgery was cancelled 5 mins before I went to theatre (they thought I had eptopic pregnancy) but that was a false alarm and I now have my surgery scheduled again for 22nd Sept. So far that’s 9months since I spoke to GP which I didn’t think was too bad considering we have an NHS backlog of 5million operations! Hope you get some movement soon and good luck xxx

Hi

Diagnosed Aug 2019 with stage four endometriosis and cysts on ovaries, hysterectomy operation to be done Jun 2020, new date for operation Jul 2022 if I'm lucky.

Good luck with yours

I’ve been waiting for an urgent Hysterectomy from Nov 13th 2017….. and had a partial Lap in 2019 that lasted 33mins because he couldn’t do anything.!! He failed to properly check my status prior to surgery and he was under qualified and I was riddled. (On 13th Nov 2017, he found a 7cm cyst on ovary, and enlarged ovary and new all my symptoms for the last 20 years) I was referred urgently to MRI 9th Jan 2020 and a new specialist… it’s been 19 months and i have never even met this surgeon except for two 5 min phone calls were he was two hours late!! I have it everywhere and it’s now deep into my bowel wall.

My daughter is 17 and showing signs (we have a hereditary element over 5 generations)… if you were my daughter, this is what i have advised her. Don’t wait for doctors, put you first! Save or ask your parents, but get a private MRI £400 on average just for pelvis and if you need a private GP ago sign off on it £89 on average. This will tell you were you are at in terms of visible endometriosis (it may not see it and it will still be there, but it sees large lesions). Also, get health care now (BUPA/Vitality) and always pay it as essentially as rent. Start a saving account and name it health, drop whatever you can in here over the time and it helps towards any urgent private tests or treatment you need. Always ask for a second opinion if you feel dismissed… and get an app called my pain diary 2… it’s customisable and can record every pain/symptom and illness you set up and show it on a calendar for doctors etc. Keep a record of everything even foods that disagree with you. Endo means I now cannot eat pasta, drink milk etc.

I wish someone had told me this, truly. Ive suffered since I was 8 years old, but didn’t have a family, so know one paid attention really. If you need anything, advice, shoulder or just anything. DM me.

Xx

Wow, thank you for your reply and information. It’s really informative. I am also 17, but luckily for me I went straight to A&E in 2019 and then was referred to see a gynaecologist so I didn’t really wait at all. However now I’m in a position where I have been on the surgery waiting list for 9months and haven’t heard anything. I am worried that I may get forgotten (which tends to happen with NHS) and so I’m not really sure what to do because I phoned the waiting list clerk and all she said to me was I was still on the waiting list. She couldn’t tell me a date of when it might be so I found that useless which is why I’m confused on what I should do next to try and get my surgery sooner.

Sadly depending on location it could be 6 months or it could be 24 months before you get seen. And even then it could be a simple diagnostic, and then back waiting again for repeat surgery. It’s horrifying and isn’t fair at all. But 100% what I recommend is what I’ve told my daughter and if her pains worsen I will get her an MRI/US or at least a consult with a private GP. I can’t afford surgery for myself but I can scrape together some funds for small things if needed and it’s vital.

Have they diagnosed you yet?

Are your pains terrible like level 6+ out of 10 most of the time?

Periods horrifying or sporadic?

Have you noticed issues around ovulation? (If not paid attention, definitely do and record everything)

Depending on these answers, I’d say get a private MRI if you are affected 4-5 days out of 7 per week or 2 weeks out of the month significantly. If you aren’t impacted (I’d still recommend) I’d make a decision to get a simple private MRI to ascertain what’s happening or if it can be seen (usually on stage 3/4 or deep can be seen but not always). See if it’s minimal it can signify less of the endometriosis and limited or no cysts but this isn’t always the case. So it’s a financial decision only you can make as an individual.

But I’d take the financial hit just to have the proof of where I am at, at this moment in time (or my daughter) but you may prefer to wait until pain is more significant or impacting more of your life before spending this amount of money.

Definitely look into a health plan however, you won’t regret it.

Benenden is good if money is tight and offers some assistance after periods of time and is lower cost but funded by people essentially.

Vitality is cheaper for me personally, and has offers and discounts etc

BUPA Is a higher paid plan, I’m not fully sure of the benefits tbh, but I know many use BUPA and sometimes it’s a little dearer than others.

Or shop about but I’d recommend this to any 17 year old right now, or any adult for their own health xx

Hello, I hope you don't mind me butting in but I just wanted to know about how the Bupa/Vitality healthcare works? I've already been to the doctors about my symptoms and been prescribed Mefenamic acid, have had an ultrasound and blood test and have my first telephone appointment with a general gynae on Tues. Because I have been to the doctors and started the process so to speak is it too late to pay into something like Bupa now? I don't really know how it works so it would be useful to have some more info from an independent person! Thanks x

It’s never too late to start to protect yourself from future issues. And under vitality (who I am with) if you don’t get treatment for 5 years they will cover you (but none cover for chronic conditions sadly).

If you don’t have a diagnosis of endometriosis and you’ve only started, get a plan in action ASAP and hopefully that will help in the long term.

Sadly, I was too late for my Endo and it lead to other issues. But I still took out the plan with vitality to protect me from other issues because let’s face it the NHS was poor prior to covid and it’s now even further swamped, has staff leaving, pressure to be vaccinated and under trained staff sadly. It’s horrifying to say but it’s looking like we are being funnelled into private healthcare if we want any treatment.

I got a quote and did moratorium, which means they don’t need my medical records for 2 years or unless I make a specific claim. But 100 recommend getting a plan.

I also recommend a second account for medical payments so you can go private for various things such as drs, scans and the like. If you have a plan like vitality you get access to a gp and discount on blood tests etc but if you can pay for simple things it avoids using them for the smaller things, but you can update them with results etc.

I’m unsure if you can access it but you can also have a Benenden plan which is 11.50 a month and you get access to a GP, and after 6 months certain procedures etc. For example if the NHS wait list is longer than three weeks Benenden can step in and send you privately. It’s people funded but very good too.

Definitely worth while to think about and maybe put a plan in action. Endometriosis isn’t exactly the highest on their list (Gynae in general in my opinion depending on location).

I have recommended several of my Endo girls (I have a private signal group of Endo warriors) get MRI’s privately at least to show them were they are right now… so if there’s a delay they have proof that the delay was an increasing factor but also allows you stronger grounds to complain and fight.

Xx

Hi I’ve been on the surgery waiting list since June 2020 an have been told I’m looking at early next year. X

Hi, I waited 12 months for my laparoscopic and just been let to get on with it afterwards, now I’m going to see a private gynaecologist this week as I’ve had enough and can live with the pain anymore, I’m going to see if I can have a hysterectomy and pay myself! Good luck

Jo xx

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