hospital waiting times : Hi, just... - Endometriosis UK

Endometriosis UK

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hospital waiting times

Victoria-M profile image
35 Replies

Hi,

just wondering if anyone is in a similar position when it comes to waiting times for laparoscopy surgery on the NHS?

I was initially referred back to Gynaecology 16months ago, i have previously had a lap 3 years ago, March this year I had an internal ultrasound now waiting pre op then surgery,

has anyone had a similar experience with extended waiting times?, my symptoms are progressively worse and becoming more and more unbearable as time goes on

I have been told by consultants secretary it’s not likely to be this year which is so soul destroying, I just can’t see and end in sight

35 Replies
Chocolateymouse64 profile image
Chocolateymouse64

Hi, I'm sorry to hear that you are going through this. I'm in a similar boat but seem to have been lost in the system. I was due to have my 3rd lap with bowel removal 18 months ago but it got cancelled. I haven't had any contact from my consultant or the hospital as to what is going on or a new date. I know that due to covid they are having a backlog and depending on availability of surgeons, if you need one specialist or 2. Currently I can't get to speak to them and for a long time the GP's have told me that as I'm under a consultant they can't do anything. I started yoga and going to alternative treatment to try and alleviate some of the pain, changed my diet and it seemed to help for a little while and I started to feel a bit more like a human being. Unfortunately it has become increasingly worse again and very unbearable. I managed to see a new GP who is arranging for another scan to see if anything else is going on and going to try and contact the hospital. I'm just fed up of being in pain and having absolutely no energy but still having to put a smile on.Sorry about that, clearly I needed to let it out!

You're not on your own, I know it seems like it. With regards to hospital backlog I did hear someone say that it was about 2years and longer in some places.

Lindle profile image
Lindle in reply to Chocolateymouse64

Have you tried contacting the specialist endo nurse at your endo centre to see if they can give you some idea? You should have been given their contact on your first appointment with them.

Chocolateymouse64 profile image
Chocolateymouse64 in reply to Lindle

I have tried and can't get through, there is no option to leave a message and it just rings and rings. I have also sent emails and had no replies.

Lindle profile image
Lindle in reply to Chocolateymouse64

If you are in England I'd contact PALS.

Lindle profile image
Lindle

Do you know if the scan showed anything?

Victoria-M profile image
Victoria-M in reply to Lindle

My scan showed that my left ovary and uterus and non immobile, I have extensive scar tissue/adhesions in my uterus x

Lindle profile image
Lindle in reply to Victoria-M

So I assume you are at a specialist endo centre and not just general gynaecology?

Victoria-M profile image
Victoria-M in reply to Lindle

I’m under a endometriosis specialist consultant but just at a general hospital, I don’t have an endometriosis nurse to speak to, the only person I know of is my consultant

Lindle profile image
Lindle in reply to Victoria-M

You are unlikely to have extensive adhesions/scar tissue in your uterus as endo is outside - with an immobile uterus and left ovary this is all likely to be behind the uterus. If this is the case it is classed as severe endo and must only be treated in a specialist endo centre. Will DM you.

Victoria-M profile image
Victoria-M in reply to Lindle

Sorry yes it’s on the outside, just checked my ultrasound report and you are right, I’ve never been told about an endo specialist centre x

Lasa profile image
Lasa

Hi I know how u feel I'm in the same boat I was told by the speaclist endometriosis nurse 18 months told her not good enough so with another waiting list I'm looking at 8 months.Meanwhile for pain management I'm on mefenamic acid tablet ,tensmachine but in two weeks going to go on postap injections x

Victoria-M profile image
Victoria-M in reply to Lasa

Hi, so sorry to hear you’re in the same boat, it’s just really deflating not knowing when surgery will be, how are you finding the Mefenamic acid? I’m currently on amitriptyline, Codeine and anti inflammatories, they give some relief but sometimes it doesn’t even touch the sides of the pain x

Lasa profile image
Lasa in reply to Victoria-M

Hi I found mefenamic is really good but I don't take the right dose as I have a toddler to look after but alot of hot bottles and tensmachine helps .It takes the edge of from the pain but not 100 percent,surgery is the best option x

Victoria-M profile image
Victoria-M in reply to Lasa

Okay, I also have a small child so am mindful when it comes to pain meds, I’ve constantly got a hot wattle bottle attached to me, I hope you get your surgery soon 🤞🏻 X

Lasa profile image
Lasa in reply to Lasa

Hi hope u too get your surgery soon I was told 8 months for surgery such a long wait x

MyStar86 profile image
MyStar86

Hi, have any of you considered going private? I did saw my gyne July last year then first surgery august last year then bowel surgery got cancelled should of been December but my surgeon has covid so I had my bowel survey January this year then total hysterectomy everything removed april this year. The prices can vary but I’m glad I didn’t wait on the nhs however I have insurance so it’s easier but I can see the price of the she goes first lap was around £3k bowel one was more £5-6k and hysterectomy I can’t remember but I couldn’t of waited 2 years no way but I’ve always had insurance so it’s different for me but is worth the investment for the future xx

Victoria-M profile image
Victoria-M in reply to MyStar86

Hi, I have gone private both times to speak to a consultant and they have put me on the NHS list for surgery both times, I wish I could afford the surgery privately but it’s so costly x

Lindle profile image
Lindle in reply to Victoria-M

Yes, surgery for severe endo with the required multidisciplinary team of 2 lap surgeons and colorectal is unfortunately beyond most peoples budget at 10K plus.

MyStar86 profile image
MyStar86 in reply to Lindle

Mine was severe endo and I had an endo specialist and colorectal surgeon. It was around £8k but I will check my insurance. I did have to pay some of it as the endo specialist wasn’t covered by my insurance so his bill was around £1-2k the expensive part is the hospital stay overnight etc that was nearly £5k. So yes it isn’t cheap but as I said with insurance I had that option xx

Lindle profile image
Lindle in reply to MyStar86

A lot of private surgeons are working outside guidelines unfortunately. The requirement on the NHS is for 2 lap surgeons plus colorectal and urologist as required. Severe endo must be treated according to the same standards as would apply on the NHS and a lot of insurers don't cover it due to the high cost. I had my surgery for severe endo 13 years ago privately under BUPA by a multidisciplinary team in a centre setting and is was 11K all that time ago. Obviously people are free to choose which way to go but I do think it's important on forums like this that members are aware that with severe endo it must be in a private endo centre setting according to the same safety standards that would apply on the NHS.

MyStar86 profile image
MyStar86 in reply to Lindle

Mine WAS in a private endo centre!!! The surgeons were all registered by the endo society and they are the only ones who are in the endo centre down here.

The cost varies depending on the area and mine was all done via the guidelines and my insurance does cover it thank you very much.

I won’t comment again however I was only offering people an alternative given 2 years wait.

You should not try to make others feel bad when you don’t know the full story. I had amazing surgeons and it was all done by the book regardless of what you think I didn’t go into all the details but the cost does vary depending where you are in the country!!!!

Lindle profile image
Lindle in reply to MyStar86

It was you who replied to me and I was just saying things as they are.

MyStar86 profile image
MyStar86 in reply to Lindle

You are not always right was my point. Everyone has different experiences and your surgery was a long time ago so please don’t try to make me feel bad for commenting on my own experience which did involve rectovaginal endo this year. Not in Manchester or London

Lindle profile image
Lindle in reply to MyStar86

Will you please stop doing this. You said you wouldn't reply again. I replied to the original poster. As far as you personally are concerned all that matters is that you are happy with your treatment as you clearly are. You referred to 'an endo specialist and colorectal surgeon' and 'his' bill which gave an apparent indication that one lap surgeon was working alone with a colorectal surgeon which is against protocol. Hence my reply. You then seemed to say you had the full team in a centre. A cost of just £1 - 2 K for two advanced lap surgeons plus colorectal for RV endo would be extraordinarily cheap and not at all typical for a specialist endo centre. But you are happy and your experience isn't really relevant to the point being made for the benefit of others as to how much they might expect to pay for a multidisciplinary team in a private centre for complex RV endo.

It is important that others appreciate just how complex and phenomenally expensive a long complex excision of RV endo can typically cost in the appropriate setting. I made one innocent comment to the original poster 'Yes, surgery for severe endo with the required multidisciplinary team of 2 lap surgeons and colorectal is unfortunately beyond most peoples budget at 10K plus'.

MyStar86 profile image
MyStar86 in reply to Lindle

Ok I am sorry I know you are trying to help I love this site and you do say helpful things so I am sorry for snapping.

I also didn’t say things correctly I meant to pay £1-2k on top of whatever my insurance paid so that’s my fault.

I truly apologise……I am struggling with hrt balance at the moment so I tend to react before thinking so I really am sorry! Thank you for trying to help others which is what matters and I’m sorry for snapping back I never usually do that so I am sorry.

Lindle profile image
Lindle in reply to Victoria-M

The specialist centres were set up for what is called rectovaginal endo (stage 4) which involves the uterus being stuck to the bowel with dense fibrosis (endo scar tissue) and typically the left ovary and ureter stuck to it all. It can involve both sides but the left is most commonly affected. It is very complex surgery that can take many hours. I know you unfortunately can't consider surgery in a private centre which sadly most others can't, but for the benefit of other the links below show typical prices for this sort of complex rectovaginal excision ranging from around 11K to over 20K.

Manchester:

manchestergynaecologist.com...

London:

endometriosisclinic.co.uk/c...

Fireflygem profile image
Fireflygem

Hi, I'm sorry to hear your struggling, I'm in a similar postion myself,I'm awaiting key hole to remove my ovaries, tubes and a dermoid cyst with them having a look for fibroid and endo along the way. I have been on the list since before the pandemic around 2019 and was told it was due to the pandemic, my anithetist wanting to run tests on potential sleep apnoe, so last November I do the overnight sleep study assured that my postion on the list was secured, my gyney also retired so my case was moved to the person who took over from him, so every month I called for an update finally in March they concluded I was borderline sleep apnoea and the anthetist was happy to go ahead, it all goes quite again till May where I have a telephone appointment which was practically a doctor reading my file to me and saying they can't be sure the anethitist has given the go until I have a lung test and ecg, I phone the medical secretary as they seem to know more of what's going on and I'm told once I have a preoperative appointment it should be 6 weeks after that, so I get an preoperative for the end of June, the nurse was lovely and booked me for both lung test and ecg so I could progress. I'm now told I have to wait to meet the doctor as he wants to meet me at the end of September and insult to injury had a letter through Friday saying I'm classed on a scale the whole nhs is using as a p4 which means it would be over 3 months so taking that and the fact the doctor wants to see me in September I can't see it happening this year unless they have prebooked my operation to consider with after I meet the doctor but I think this is unlikely. I'm in daily pain, I'm currently in chemical menopause with hrt, and 3 kinds of pain relief, I know I'll be on the hrt till my actual menopause age but would like to come off the 3 month injections as it's been years I've had them with the inevitable wax and waning of them running out and restarting again. Being in constant pain washes you out and not only hits you physically but mentally as well my advice would be to phone your consultant and ask for the number of there medical secretary as they can tell you where you are in the system and what steps forward are happening or not hopefully you get sorted soon unfortunately it's bad all over 😓

P status for how long wait for procedure is
Victoria-M profile image
Victoria-M

Hi, I’m so sorry to hear you’re going through so much, it’s a never ending battle it seems! The waiting lists are lengthy and I know we’re all in the same boat just waiting, thank you for letting me know about the P system I didn’t even know anything about that, I will constant my consultants secretary and see if she can give me any more information

Thank you for your help x

LottieXD profile image
LottieXD

I’m waiting from my laparoscopic surgery got told it’s urgent and also have a lump on my cervix they want to remove and got told a few days ago it’s not going to happen till next year 🥺 my mental health and my physical health is just getting worse. I’ve cried more than I ever had. all I keep getting told is to go private but I can’t afford that :( it’s horrible :( I’m sorry you are going through it too !!!

Lasa profile image
Lasa in reply to LottieXD

Hi Lottie ,I totally sucks we are in pain not only that affects u as a person .Yes private is expensive and even if u get health insurance not covered for pre existing conditions. We all just have to wait not fair x

Victoria-M profile image
Victoria-M in reply to LottieXD

I really feel for you! The fact you’re an urgent case and you’ve been told it won’t be this year is just awful, it takes such a toll on us mentally and physically , just feels never ending x

JenRow7 profile image
JenRow7

Really sorry you are in this situation. I went to a private info evening and the surgeons work both. Just said they are not getting enough surgery days in nhs hospitals to catch up and the wait can be 2 years here. Cancer surgery is the priority. Keep trying gp and hospital secretaries. Use a and e and pain clinics etc. I hope you hear soon x

Elaine1001 profile image
Elaine1001

Hi, it can be frustrating sometimes when your in pain and not getting anywhere with answers from the hospital your under. I had an hysterectomy when I was 42 as , I had problems. I still had pains on the right side but, I just let it go. I have a very high pain fresh hold. Last September I was in a lot of pain, I went to the out of hours GP which, is in the hospital and I had an X-ray and blood test. They told me I was constipated and gave me laxatives. Couple of weeks later I had an ultrasound which, showed I had a complex cystic lesion which, was sinister and it was 18cm x 8cm. I had open surgery in October and it got abandoned as they couldn’t remove it. Everything was stuck and the cyst had gone around my side and back and was wrapped around my bowel. Where my uterus use to be is full with endo and pushed my rectum to one side so, I can’t poop properly. In January I requested a different hospital and I’m under one of the top surgeons for endo. I’m now on the waiting list for urgent surgery. I have the contact details and I rang them about this. They said it was all to do with getting the surgeons that was needed together to do the surgery but, there is also people in the same boat. She seemed to think, it won’t be before Xmas so, just a waiting game. I take lyrica and naproxen and that seems to take most of the pain away but, I have taken that for some time, years in fact and that seems to help. Hope it gets sorted out for you soon x

Missev profile image
Missev

Hello Yes I was in a similar position got diagnosed with Endometriosis November 2020 and put on the waiting list and I have only had surgery last week. I know frustration it is and I just calling the consultants secretary and surgery bookings.

Hopefully you should hear something back soon.

WanderingFox profile image
WanderingFox

I was referred to gynae last November as a routine and even though I ended up off sick for six months the status remains routine. The waiting list for this is five years.I am now seeing a gynaecologist through private healthcare because I cannot wait that long, I am in a lot of pain.

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