Hi Everyone, this is the first post I've made so I'll try to explain myself as best I can... I'll give you a brief history... I've had chronic pelvic pain and painful periods and ovulation since I started my period but was always told I was 'just unlucky' which I beleived and just lived with however in 2021 It all started to get worse and a mild stabbing pain I'd had for some time got worse (also getting pain when urinating) and so my GP referred me to get a transvaginal ultrasound which found a small endometrioma this was the first time anything had been seen on a scan for me and was oddly validating! I was then referred to gynae and eventually got an appointment with the consultant in november who recommended removal of cyst and exploratory laproscopy to diagnose endo (again such a releif to finally be acknowledged! even though I know this isn't a diagnosis as yet its one step closer) I asked the consultant how long is the wait and they said 'thankfully not too long and estimated about 6-8 weeks at the most 12' I was surprised by this at the time but was so relieved that it wouldn't be too long as I had been struggling for so long as it was already. Unfortunately when I phoned the secretary early this year in 2023 to follow up as I hadn't heard anything I was told I'd be lucky If I had the surgery this year?! I was absolutely devastated as you can imagine! . I was in complete agony over xmas but kept telling myself that it wasn't too much longer until surgery only to find out its not happening anytime soon. I've asked my GP to order more scans to see if something has worsened my pain (cyst getting bigger or more cysts etc) but also plan to contact PALs as I feel its quite a cruel thing to be told its only a few weeks to then find out its years!!
So I guess I'm curious whats the waiting times like currently elsewhere- is over a year for laproscopy normal at the moment? and also if anyone has gone private and whether they think its worth it or is it too risky to trust private with something as complicated as this condition can be, as I feel like I'm out of options and realistically if its not happening in the next 6 mths I'll have no choice but to get a loan as the pain just keeps getting worse each month
Thanks so much for reading my post any advice anyone has will be appreciated xx
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HT267
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I like you was told the wait wouldn’t be long under the nhs, (also a removal of endometrioma). I waited a while but everything seemed very disorganised and I had no faith in who I was dealing with. I luckily have bupa with work. I researched a gynaecologist that was an endo specialist and booked an appointment. That took 4 week as he also works for nhs. I had a thorough consultation, (not a 2 min job like my nhs appointment). I was booked in for a lap about 6 week later. It turned out I had stage 4 endo. I’ve had a further mri, and I’m due to see him again in about 4 mths to see how I’m doing.
Hi Starry1977, sorry you have had a similar experience to me and thank you so much for replying to me I really appreciate it! It's so reassuring to hear you've had a good experience with going private x
Hi, I'm in Staffordshire and am currently in my 15th month of waiting but I require 2 surgeons, so that list isn't quite the same. I would ask to be put on a cancellation list, see if it can bump you up a bit 💖 sorry the lists suck so much at the moment. I rang my surgeons sectary and she said they are trying to shorten waiting times as we speak so maybe that will help 😔
Hi Pinkybow, Thanks so much for replying to me I really appreciate it! Sorry to hear you have a long wait too I will definitely try the cancellation list idea x
So I've been quite lucky that my endo journey thusfar has been whilst I've been living in Hull. It was slow going at first, I had an ultrasound in Feb 2022 and only got a follow-up in Dec - but I was put on the waiting list during that follow up and will be having a lap in a few days - less than 5 weeks later.
Honestly I was shocked because back in 2018 my mum was waiting several months for a lap (Manchester) so I was expecting it to be awful and still backlogged from the pandemic. It really does depend where in the UK you are.
Hi OpalArcadia, Thanks so much for your reply and sharing your experience and story and I'm pleased to hear that you will be having your surgery in a few days. The lists seem to vary so much like you say depending on where you are. Best of luck with your surgery x
hi HT267, I am fortunate that we have private health care through work, so my whole journey from MRI to lap was about 6 weeks. I had stage 4 endo and needed a bowel shave too. I had my 2nd lap before Christmas after having my 1st in 2021, but it all came back and I suffered the same pains you’ve described. My Gynaecologist is a bowel endo specialist, but to see him down here on the NHS there is a 2 year wait. If you can afford to do it this route, I would definitely recommend it. Big hugs xx
Hi SS10, thank you so much for your reply and sharing your story with me private is so much quicker! I think I will have to seriously consider this route x
I am in Cheltenham. My GP did referral in June 22. Saw consultant in November 22. Just had my laparoscopy four days ago. I think I was on a cancellation list, he did say he would put me on both. I thought I would be waiting years. Listening to others stories there appears to be a large variation in wait times. I was not expecting to find anything. Turns out I have stage 4 and have had extensive surgery. My gynae consultant is an endo specialist as it turns out.
Hi Moomin44, Thank you so much for replying especially just after your surgery! I hope you are healing well I think the cancellation list idea seems to be a good idea. I will definitely ask to be put on this x
Hi, I have confirmed endo from a surgery in 2017. And went back to my GP last May with spotting issues (months at a time) and more pain again. My GP gave me a pelvic exam and I was referred for scans which I got in July. But then I had to fight to get re-referred to gyno as I every time I spoke to my doctors it was a different GP. The gyno appointment it’s self was very quick and was early August. Where they agreed surgery and the Mirrena.
I’m still on the wait list( which I need to cancel), but I actually just the lap privately to fit around my masters degree and am currently 10 days post op.
Hi Luna-24, thanks so much for replying and sharing especially just after your surgery! I'm bowled over by the kindness on this forum and from this community. I hope you are healing up well x
thank you, I recovered physically and pain wise really well. Day 5 and I was feeling good then suddenly day 7 I had severe allergic reaction to the surgical glue!. So dealing with has been interesting constantly questioning if it’s healing and it will set back the external wound healing a bit. And currently they just look awful. As it’s my second surgery it was suppose to everyone
Last January I asked for a GP referral to NHS Gynae, not for surgery but just for a consultation about surgery, and many months passed without getting an appointment. Saw some waiting times on the internet at one point that suggested years, rather weeks or months. Luckily, my employer started offering us Bupa insurance and that helped to get the ball rolling (though I probably would’ve ended up paying myself if that hadn't worked). I live in Manchester but researched BSGE gynaecologists in all of Britain and found actual clinics specialising in endo in London so that’s where I went. From initial consultation to surgery day was about 4-5 weeks so much speedier than the NHS. Now I’m 5 months post-op.
I’d recommend going private if you can afford it. It is a lot of money but it’s for your health after all, that was my thinking at least. Unless maybe the specialist you find also works for the NHS and they can somehow switch you over to their NHS practice and bump you up in the list. Interestingly, got a letter from the Manchester Gynae recently, a year after my referral, and I thought it was the appointment I’d been expecting but they were only asking me if I still needed to be on their waiting list :/ but I don’t, now
Hi Parleystopaz0e, thank you so much for replying and sharing your experience I really appreciate it. I will have to seriously consider private as like you say can't really put a price on your health but I also will look at seeing if I can be bumped up the nhs list for the private surgeons once I find one. Such a shame NHS is so stretched that we have to go down this route. I hope you are recovering well from your lap x
No worries! Hopefully that didn't sound like I'm being pushy and making you feel like you have to pay, wasn't my intention!
Also, Avourneen makes a really good point about choosing a specialist carefully. You definitely want someone who is an expert in excision but also someone whose aim is to get everything done in one surgery. I chose the surgeon I did because he seemed to have the right qualifications and he also believed in getting the necessary team together to remove all of the disease in one go as opposed to multiple surgeries. It would probably involve having various tests and scans done and speaking to additional specialists e.g. bowel or bladder surgeons. I also had to sign consent forms to cover all possible scenarios of what they might have to do once they start operating so they don't leave anything behind.
No not at all didn't come across that way, just think its a sad reality that the NHS is not fit for purpose and we're all suffering as a result. I will definitely check the credentials before going down that route
I'll let you know how I get on and thanks again for your help x
Thank you so much to everyone who has replied to me I'm bowled over by the kindness of this community! I will keep you all posted on what route I go down xx
I had a priavte op with a specialist two years ago, the only thing I would say is be careful they don't try to get extra surgery and therefore extra dosh out of you if you go private. I was advised not to have a hsyterectomy because I could still try IVF but actually asI had very severe adnomysioisis as wellas endo I couldn't have carried and embryo to full term. I believe my priavte surgeon advised me todo this thinking he would get another op out of me later. Sadly the endo is no so widespread 3 surgeons have told me nothing can be done, About 20 women have been in touch re this surgeon and some had ahd 15 ops in one year, which obviiously cant be right. But this guy has retired now before an investigation was launched....... So just be careful they don't push for an op that isn't neccessary or try to split the proceudre into two stages to get more money.
Having said that the experience inthe priavte hospital was massively better than the NHS the nurses were super attentive, checked on mt regulalry when i was coimng round, the surgeon came to check on me himslef and offered very good aftercare/advice after the op.
The senior management at the priavte hospital came round to check if was okay with everything and my husband was able to stay over night on the sofa in the private room. The main difference was the staff seemed to care and they seemed to want to get good feedback. Their was the idea of a customer experience and that you had the right to good treatment as you were paying.
With my NHS op I saw the surgeon before the op, the nusres didn't read my notes and gave me pain killers I was allergic to and I spent 20 hours vomiting after having my abdomen cut about alone. I didn't even have a bowl to be sick in so I had to vomit in my water jug. I thought I might die alone in there just vomiting relentlessly. The surgeon was a non specialist an did ablation instead of excision and the whole op was a waste of time.I know the NHS staff try to do there best but I think there is also an issue that care doesn't have to be any good because there is no follow up and patients feedback is ignored. There's very little accountability.
Go private if you have the money but really check out the surgeons credentials carefully first. At least you won't have to wait months or years. It's sad but the NHS is just not functioning at the moment. Good luck.
Hi Avourneen, Thanks so much for your response and sharing what happened with you sounds really challenging I think thats my fear with private but thats such good advice to stick to what you came for and not get persuaded to have more surgeries will definitely look out for that. Sorry to hear you had such a bad reaction to pain killers and they didnt check for allergies agree with the lack of accountability is a real issue in the NHS such a shame
my gp told me he wouldn’t test/consider endo because it ‘wasn’t a medical necessity’ but as the pain got too debilitating I went to an endo specialist in Cardiff and had a lap just under a month later. The way the staff/surgeons etc. Treated me made such a massive difference, they made me feel so comfortable. They managed to remove all my endo and 2 months out I’m getting my life back again it’s mad not to be in constant pain, not completely perfect but so much better than I have been in years so I 10000% recommend going private if you can.
Update! Hi everyone I just wanted to update that in the end the NHS came through and I had my lap 3 weeks ago. My GP advised me to have a second scan and I think it bumped me up the list. The surgeon found endo on my ovaries , bowel and bladder and excised all of it I'm so relieved to finally have answers. Thank you for everyone's messages of support ❤️
Often the same NHS consultants you’d see for this also work in private care too, so no issue with trusting them.
I went private in the end, the first two laps I had on the NHS with minimal waiting times but this last time i waited for 18 months and still didn’t have a date so I went private and had my op within a month. It was a much better experience and it was a nice luxury to recover overnight in a room to myself too ☺️
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I will definitely try the cancellation list idea x
private is so much quicker! I think I will have to seriously consider this route x
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