10 month wait on NHS...should I go private? - Endometriosis UK

Endometriosis UK
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10 month wait on NHS...should I go private?

Abbs7664
Abbs7664
42 Replies

Hi everyone,

I finally managed to meet with a gynaecologist last month after a four month wait on an 'urgent' referral. He said I needed a lap and it would be about 6 months wait, but he'd put me on the cancellation list.

I phoned his secretary today, and she said his waiting list is 10 months! Apparently they rarely get cancellations, and I'm 'about halfway' down the cancellation list, whatever that means.

I can't deal with this for another 9 months. I'm missing uni and work, I can't go a day without codeine, which is making me really constipated (tmi), but I'm scared to take the laxatives they've given me because the pain in unreal when I do. Last time I passed out (not that the GP cared)!

I'm just at the end of the road. I phoned loads of different private insurers today, but none will give me cover for a lap because although I'm not diagnosed it's considered a 'pre-existing condition'. I'm now considering just taking out a loan, but it's so expensive!

So, have any of you ladies gone private for your laps? How much did it cost? Is it worth it?

Sorry for such a long post, I'm just really at a loss right now...

42 Replies
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Brambledoggy

Hello. I just wanted to say hi and say you’re not alone. I’m in the same position as you .....only I’m 48 now and have had the same symptoms as you from 17, so 31 years of 💩 and pain. I’d like you to read my profile. The reason I’m posting is I don’t know the answers either but I do know the story. It’s horrible. And frustrating. I’m in BUPA through my partners insurance cover and am not insured either because, like you, mine is a pre-existing condition. I feel your frustration. I don’t know if going private is better or if to stick with the NHS. I do know I’m in pain, and I do know it’s a lot of money to sacrifice.

And I too would like to know others experience of private vs NHS.

Sending you a big hug as you sound so low. Nina. ✌🏻❤️

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Abbs7664

Thank you so much for just reaching out. It's so comforting to hear from other women in the same situation!x

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Laura_T

I asked how much it would be a year ago and was told for diagnostic lap started off at £3500 and that was without any treatment, this is in Wales. Maybe ring around or even ask the secretary if the gynaecologist works private and she might have a idea of how much it costs. I’ve been cancelled twice for my lap and now I’ve been waiting 11 months. It’s crazy, I know exactly how you are feeling. Have you been prescribed laxido? I find that doesn’t give me the awful cramps. I take about 3 sachets a day and also bought colon tablets from the herbal shop which helps.

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Abbs7664
Abbs7664
in reply to Laura_T

That's awful, I can't believe it's been cancelled twice! I'll phone the private hospital on Monday and see what they say.

I'll maybe try laxido? I've been prescribed dulcolax right now, but the pain is so bad x

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geekybird
geekybird
in reply to Abbs7664

I’ve had horrible experiences with dulcolax - I’ve tried it twice and both times I had cramps and it was like having diarrhoea. One of my relatives (tilted womb) swears by laxido. If that doesn’t work for you, have you tried lactulose? It’s an osmotic laxative (draws water from rest of body) rather than a stimulant laxative like dulcolax. That’s what I use when my diet changes on holiday / used after hysterectomy. It’s slower to kick in than stimulant laxatives but once I’ve go the dose right (and importantly, am drinking plenty) it keeps me regular.

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missusbroc

I was in a similar position to you, I’d just started university abroad on a scholarship when the pain started. A couple months ago I was referred to an NHS gyno. He wasn’t the friendliest but did start me on 3 months of GNRH agonist injections. He told me to see if it improves my symptoms and then they’ll have a clearer idea if it’s endo or not. I begged him to just do a lap but he said I have to see how the injections go first.

My scholarship program are really not understanding and basically said you get the lap and take a semester leave of absence or you drop the scholarship.

I visited a Nook surgeon near Manchester last weekend and he was super kind and reassuring. Didn’t make me do any further tests (apart from an ultrasound). The consultation cost me £250. The lap would cost £6600. He also could do the lap within 2 weeks!!

I was contemplating whether to book the lap for ages, it’s a ton of money to spend. But if you ask anyone they will tell you that your health comes first. I’ve just paid for it and I can honestly say I have 0 regrets.

As for a loan I’m not sure.. I am lucky that my mum and grandma have offered to help. I also took a leave of absence from uni for one semester and have got a job for after my lap. This way I can earn the money back in 5 months (:

Another way may be asking them if they could offer a payment plan?

Yes private is expensive but with endo you really need a Nancy Nook specialist doctor. I say go for it 💛

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missusbroc

Oh forgot to add, the price of the lap includes removal of any endo found. If there is no endo or it is worse than they expected the price will not change.

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Abbs7664
Abbs7664
in reply to missusbroc

Thank you so much for your reply.

I'm a bit scared of all the side effects I've heard about with the GNRH injections to be honest with you. I'm thinking that private really is the way to go. I don't want to miss any more uni! The surgeon I've seen is an 'endometriosis specialist' and teaches excision to students, but he's not a nook doctor, so I'm not sure about that either. I'm in Aberdeen, so the nearest nook doctor is Manchester, which is a fair bit away!

I hope that everything is going well for you!x

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missusbroc
missusbroc
in reply to Abbs7664

I think that if the pain you’re in is currently unbearable a lot of the time then the injections may not be for you. For me I don’t have unbearable pain, when I had the first injection for the first few weeks my symptoms got worse. They were really erratic too like pain level 7 for 2 days then no pain at all for 2 days. As for side effects I didn’t get the hot flushes, I did get bone pain though in my ribs. Scary but definitely not very painful.

Yes, I’m travelling to Manchester for my surgery but I’m lucky it’s only a couple of hours away. I really would recommend seeing a nook surgeon though, I know it’s really far away but it gives you much more peace of mind.

Also be careful of online prices, I’d looked on the internet and saw the price of the lap being £3000 so when he said it will be £6600 I cried. He said it would always say ‘from’ £3000. So £3000 just for a diagnostic lap then you’d have to pay more and go back for surgery if you need endo removed. Apparently it’s less expensive to pay the full amount of £6600 and get the endo treated at the time of diagnosis, but I guess it’s something to look into. 🙂

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BrightLights88

Hi, I waited more than 11months. Forget the gynae specialist, go online and search for BSGE endometriosis centre near me, and get your self referred there by your gp. Within 3months with a bsge centre I had a MRI, follow up and then results and surgery. I am now 8 days in fri my first lap and recovering well. Good Luck x

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Abbs7664

This is the only BSGE centre near me 😓 He said I needed an MRI but I haven't heard anything more about that.

Glad that you're recovering well! x

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Beestaree
Beestaree
in reply to Abbs7664

Would you consider travelling to another centre? I've seen some women in my area travel a couple of hours each way just to get seen when they don't have the money to go privately.

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BrightLights88

oh no I'm sorry to hear that. I would say remain with them. Private is pointless you dont get the care after the surgery etc follow up, fertility treatment.

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JulesUK

I had a bad experience with my NHS operation (via A&E) I was very fortunate to have health cover at the time through work and had a subsequent operation around two months later which was done properly, professionally and I was given the opportunity to ask questions, call the consultant if I had concerns etc. I really dread to think where I would be now if I hadn’t gone down that route. Unfortunately a few years down the line (after more operations) the insurance company wrote to me saying they would no longer cover me as (can’t remember the exact words) there wasn’t a cure so wouldn’t continue to pay. If you can why don’t you pay for one consultation and see if that gives you the confidence to consider going private.

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Abbs7664
Abbs7664
in reply to JulesUK

That's so sad. I think maybe a consultation would be a good place to start. Thank you, I hope you're feeling better now x

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JulesUK
JulesUK
in reply to Abbs7664

Yes thank you. The mirena coil has been great for me. Good luck with everything. x

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7777melg

Hi , I know the feeling I waited 12months for my hysterectomy and to have my Endometriosis, fibroids removed. I phoned the gynos secretary every month to see where I was on the list . I even went to doctors at least once a month and she would send in a letter stating the pain I was in . I was in so much pain they eventually put me on prostap injection while I was waiting for my OP. But the injections only helped slightly. NHS the waiting list is so long also it depends where you live in England . Have you looked at private health care in Scotland ? I was told it was slightly cheaper there. Good luck I know it feels like a dark tunnel but you will get there x

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Abbs7664
Abbs7664
in reply to 7777melg

That's unbelievable! Judging by their website it looks like it'll be about £3,500, but it's just trying to get together that sort of money, or convince someone to co-sign for finance with me. I'm a student so I can't take it out myself.

Hope you're feeling better now! x

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EndoJaz

Hi am in same situation too 😡 I take chia seeds and psyllium husks for the constipation which is natural and very effective. Good luck x

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Abbs7664
Abbs7664
in reply to EndoJaz

Thanks, I eat chia seeds, but I've never heard of psyllium husks so will try that out!

Hope you get seen soon x

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EndoJaz

I just think private will be so costly and I would think it would go on and on and end up a ridiculous amount. The stress of that will not be worth it. Keep badgering the hosp. It’s so unfair. Hopefully win the lottery! x

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Hazeybabes

I went private for my first lap, however you are better looking for a bsge centre, where they specailise in endo.

I am top of the list for my next op but need to get my BMI down a little to be safe during the 4 and half hour op.

If this is your first lap, don’t be fooled into thinking this will fix everything. Dependant on what they find, you may require further surgery and or hormone treatment.

Mine is slightly complicated as have stage 4 endo. And have no children and have been trying for many years. My gynea has avoided most of the hormone treatments as they have caused weight gain 🤦‍♀️

I have been lucky that my gynea worked both privately and through NHS and was able to find someone (privately) who really knew her stuff when it came to endo.

Do your research and maybe ask to be referred to someone else. Try and find someone dealing with endo mainly. As gynea surgeons cover lots of conditions and not all specailise in endo x

Wish you luck with getting your op soon.

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CJR99

Hi Abbs,

I'm 4 days into recovery after private Lap with a BSGE surgeon (amazing guy in Liverpool).

This is my 3rd surgery (inc a total hysterectomy) in 2 years.

It cost me £5,570 inc overnight stay/meds/surgery etc and I have a follow-up in 4 weeks.

I live in Newcastle. As you will be aware postmenopausal Endo is rare but, there are some of us suffering out there. I sought a second opinion as I couldn't tolerate the symptoms any longer (I had residual Endo from my last lap in 2018/Hyster was 2017).

The surgery was complicated but, successful: Endo excision/bowel stuck to vagina-(bloody nightmare!)and appendicitis (appendix removed and awaiting pathology). They also flushed my ureters and freed up my adhesions.

I'm feeling pretty rough but, recovering well....I have not one regret about paying for this procedure. I do appreciate it's expensive and I'm not rich by any means but, I truly believe seeing a top surgeon is so worth it in the longer term.

If you need any further details please do get in touch...I have total confidence in the team that looked after me!

Best wishes,Clare

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EllieR1992

Hey, sorry youre going through it all, and during uni too, thats a lot to deal with so for one, be proud of yourself for handling it all and be kind to yourself on the bad days. I have just had a laperoscopy done privately because the specialist im with had told me me was certain id need 2 operations as I have stage 5 so a lot needs doing; i paid for the laperoscopy because i wanted to get the ball rolling as im now on a year waiting list for the big surgery which i could never afford). While i am definitely glad i went privately, i would say the most important thing is to make sure youre with a surgeon you feel confident in. My first NHS gynae diagnosed my endo but still ignored symptoms I told him about which should have diagnosed the stage 5 sooner. So if youre going to pay the money just do some research to make sure its going towards a good experience as possible etc. I was referred to an endo specialist team and read a lot of reviews online etc. Also i appreciate i was in a priviledged position to have the savings to pay for the laperoscopy but i would agree that health should come first and if it is affecting you that badly then its probably worth it. Also i would also reccommend laxido sachets, the hospital said theyre a very ‘gentle’ laxative and you can take up to 8 a day i think. Sennacot tablets can also be good, theyre a natural supplement i think. I have also had a much happier tummy since i read up on endo/anti inflammatory diets, i have cut out gluten and cut down on meat and refined sugars. I have found it a fairly easy change and definitely feel better for it. Message if you want to chat more about that! Good luck with it all xx

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geekybird

Senokot is made from natural senna. However, it’s a muscle stimulant laxative like dulcolax, so someone who reacts badly to dulcolax may also react badly to senna, which was unfortunately my experience.

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EllieR1992

Ahh okay, sorry! X

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Abbbb

Hi Abbs7664,

I have had 3 laparoscopies privately and 13 weeks ago had a full hystrecomty I cluding ovaries at age 33 because of this disease.

Going private is by far your best option if you have the money. Dont hesitate. I live on the skirts of london, used BMI hospitals and paid £4800, plus £450 for initial consultation and ultrasound which my consultant did on the spot.

I was promised after my first big op (stage 3 endo, twisted ovary stuck to womb, mass attached to gut and intestine etc etc)that I could go under NHS from there on. The wait lists remain the same, you are signed off work with pain killers and your life feels not worth living. That's the reality of how this disease is treated by the nhs.

If u can go private and make sue the consultant gives you as much info as pos on stocking re-occurance. Sadly it happens more than we would like. After the op, you need some form of hormonal control to keep estrogen low, stick to a low inflammation diet, you can google the endo diet, and excercise and stay healthy.

I found private insurance through Aviva that would cover you if you were 2 years clear of an issue - call a few see what the prices r and what their coverage is. Be honest and specific u never know you might get cover God forbid you need future procedures.

I wish every luck under the sun. If you would like any specific info of going private, or details or my experiences in between etc please do message me.

Xxzz

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asoullessstatic

You’re not alone at all in this.

I was an urgent referral to a BSGE center last year, as I was literally suicidal in pain. It took my GP sending 3 letters, complaining to the NHS regulator, and me making a complaint to NHS Grampian to get seen. It took 40 weeks to get a consultation appointment. I was told that “you need a lap, and you needed one ten years ago.” To ten find out the wait list for one is over a year in NE of Scotland. I was sent for an MRI scan the first week of April. Didn’t get an appointment until the last week of August. I’ve been waiting since April and not heard a peep from the hospital…not a follow up appointment which I was told I’d have at 3 months, 6 months later got nothing.

One of the things I’ve found works for codine is Dulcosoft, it helps soften your stools, superdrug.com/Health/Stomac...

And fibogel which is a fiber bulker, and helps make them easier to push out. amazon.co.uk/Fybogel-Hi-Fib...

I tried to see if I could have my lap done privately, but again, can’t get cover anywhere now, and then I was told because they suspect I have endo on my bowls, that they wouldn’t feel comfortable doing it outside of a hospital that has an intensive care unit just encase there were complications during the operation. There isn’t a private hospital in Scotland that has an ICU unit, so now I have no option to wait.

Frankly the Endo care the NHS provide is nothing short of utterly incompetent and neglectful.

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AllthatGlitters

Hi realised you are in NE Scotland, I am too. Did you have to wait over a year for ARI?? Thanks for always responding and giving me good advice when I post on here.

Kate x

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asoullessstatic

I am. I was refered to ARI last July. I've not had my lap yet. I had my MRI on Tuesday. So I have literally been waiting over a year already...for an MRI scan, and thats all that's happened. I have to say, I can't rate the care at the hospital because I've literally had none. I go through phases of just being distraught and then utterly absoloutely enraged by it.

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AllthatGlitters

Yes I totally understand you. ARI gynaecology is a nightmare, I got told when I phone the secretaries that the consultants were on holidays and lists for surgery were being cancelled x

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asoullessstatic

As far I know they only do endo ops one day a month - at least that's what I heard from someone, I work on the same campus so you're never more than two degree of seperation away from someone there. I can't verify that it's true but considering the amount of private work the consultants do there, and the limited number of operating rooms I'm not surprised by it. So the wait isn't a year long, its actually 12 - 14 surgical days long. We shoulde have been seen, MRI'ed and laped in really around 4 months but instead I can't believe I've faced a nearly two wait year for a diagnostic operation. It's an absoloute disaster.

It's nice to know theres other NE women on here...I've been really wanting to set up a NE Endo group of some form...the nearest one for us is Dundee, and considering we're a BSGE center I can't believe we don't have an Endo support group in the city.

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Abbs7664

Thank you so much for the reply! I'm in Aberdeen and studying at ARI too. I honestly can't believe we're treated like this!

It's so nice to find other women in the NE. There is a new endo support group, but they only meet on Saturday's. I'm usually always working, so I messaged the page and asked if they had any plans for other days...and they never replied...

I wondered if they would consider a referral to Edinburgh? Not sure what their wait list is like, but they're the nearest centre after here x

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asoullessstatic

Some of the same consultants at ARI work at Edinburgh too (they co-research with the Edinburgh pelvic research center, and I know one of the surgical consultants who does endo is up and down a lot), they're not any better tbh.

This is what happens when you literally can count the number of endometriosis gynae doctors on one hand for the whole of Scotland.

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asoullessstatic

Actually after looking at the Endo page for Aberdeen I think I'll give it a miss...I'm too science minded to really buy into some of the speakers they've had. I'm no a huge fan of having "alternative" therapies at these groups when they have never been proven to work, either been proven to be placebo effect only, or are known psudoscientific woo. These kinds of things really shouldn't be encouraged in support groups...but that's my personal opinion before I end up upsetting someone and getting kicked off hahaha.

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Abbs7664

I completely agree haha. I just wanted to actually meet other women and talk about the doctors at ARI, but if they can't even reply when someone reaches out, then they aren't much of a support group at all...

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asoullessstatic

If you’re ever about ARI and want to talk about endo stuff give me a shout. I spend more time on that campus then I do anywhere else 😂😂😂

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HikerGirl

I wouldn’t write off all non-western medicinal options before you’ve tried them, some of them are remedies dating back hundreds of years and many women find relief from them. Though it’s always good to take a critical approach to anything.

On the opposite of that, the GnrH being prescribed (Zoladex, prostap) hasn’t undergone enough studies to actually show it has any positive effects on endometriosis. Or that the long-term serious side effects of that chemo drug (mental health issues, bone density reduction, permanent infertility to name only a few) actually outweigh the relief in symptoms. Best to be critical of western medicine too when it comes to endo as so little is really understood about the condition at the moment.

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asoullessstatic

I’m literally a inflammation research scientist I know how to be critical of things. These “remedies” have either been proved to not work or have been proved to not to work. If they worked they’d be called medicine. I hate to be so curt on this but I’ve spent 10 years doing actual lab based medical research. I know how to be critical of information. If I choose to not participate in the promotion of techniques that have been repeatedly shown to be of no medicinal benefit then that is my prerogative.

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HikerGirl

Wow yes, very curt! Slightly unnecessary given we’re all educated women just working our way through a difficult and painful situation the best way we can find. Modern medicine hasn’t exactly caught up with endo very well either. When the research eventually leads to better diagnosis and treatment then perhaps less women will be lead towards alternative options.

I’m responding as if I’m one of those trying all the alternatives - to clarify I’m actually not beyond some massage oil, acupuncture and hot water bottles... if those ‘remedies’ have been proven not to work then I couldn’t care less as it feels good to me!

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asoullessstatic

It’s fine if it feels good but let’s not pretend they are an endo treatment, a “remedy” is not a treatment and an endometriosis support group isn’t really a space where individuals selling these should be allowed in to market directly it to women.

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AllthatGlitters

Hi I paid privately for a laparoscopy and hysteroscopy with a BSGE surgeon/hospital as I was never being given a date. Even after my GP phoning them and me pestering the secretary. In total for the consultation, lap and follow up I was £5,500. It’s a lot of money. Do everything you possibly can to get it on the NHS before you go down the private route. I had no choice as I didn’t have a life as I was so ill x

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