I'm wondering how many have resorted to private treatment? I have only been on this forum for a short while but I've noticed a lot of posts/ replies from people who've sought private sector treatment. This mostly seems to be due to long NHS waits/ not being taken seriously by NHS staff/ misdiagnosis, etc. I too am taking this route out of desperation to have some kind of life back. It seems as though the NHS is letting women with endometriosis down. But I personally don't think that it is the NHS themselves to blame, but rather the effects of chronic underfunding by the government. I'm thinking of raising this issue with my MP, so would be interested to know how many other women are having to pay their way out of this awful situation (whether they can afford to or not!).
Private treatment : I'm wondering how many... - Endometriosis UK
Private treatment
I did last year, had enough and paid in December. Best money spent. I sold some jewellery to pay for lap to get it over with and know for sure.
If you look at the endo uk site there is some info about this situation in general and it going to parliament. I think economy comes into it, but mainly avoidance. If GP’s diagnosed straight away, there wouldn’t be enough gynaecologists to perform laps and treat.if they can come up with a better solution for diagnosis and treatment it would be better.
How much was it for your surgery
I'm having a hysterectomy in 2 weeks time. The cost is just short of £7000. I had a quote for a laparoscopy too, which was around £4500. We've scraped the money together out of sheer desperation. These days I'm rarely out of bed for more than a few hours each day. I'd be willing to sell my soul at this point!!
The lap with Helica treatment was just under £3K, that included one night stay after.
That's a pretty good price. Perhaps I should have shopped around a little!
I didn’t think too bad. The consultant said it was slightly cheaper at the private hospital than the private part at the NHS one.
The only thing to take into consideration is what they might find. He found more than he bargained for, but could only do so much due to timescales. If it had been NHS he may have continued a bit longer. He still couldn’t have done everything though.
Sorry but politics should not come into this forum unless you have worked in the NHS you do not realise what is actually happening. That said I resulted to private care initially via health insurance, latterly by getting a credit card to pay off gradually and it was the best thing I have done, eased my anxiety, made me feel better and got the result I wanted. I felt rather selfish that I could do this as there were so many other ladies in pain and waiting for their appointments but I have looked at the wider picture and can see things differently but will not say anymore as I too will be getting into politics. So that said I wish you well for your future venture🤞
Thank you for your good wishes. I'm a big believer in the NHS and feel strongly about ensuring that we continue to have it and benefit from it. But the more people who resort to getting treatment privately the more at risk the NHS is. People seeking private treatment out of desperation over long waiting times distorts the figures and the reality of how direly underfunded the NHS is. It also means that we are paying money which has already been taxed by the government to provide a healthcare system, to private healthcare providers, essentially meaning that we are paying twice. I might sound radical here, but my thoughts are that income tax and/ national insurance should be increased. The extra revenue can then go to the NHS to enable them to provide the appropriate, timely treatment to patients, avoiding the need to go private.
I have nothing but praise for the NHS - I was diagnosed with Kidney Failure 40 years ago, and I have been kept alive since then with dialysis and a kidney transplant which lasted 36 however. However because of the drugs I took over that time they caused lots of side effects eg skin cancers and hip problems. To see a consultant for these other conditions would have meant a long waiting time on the NHS so I felt it money well spent to see a consultant privately to speed the job along. Even though I say these consultants privately I always had any surgery on the NHS.
I went private in the end due to bad experiences on nhs with getting diagnosed, the dr I see privately Works for the nhs also as many do, it’s more the waiting times as they are that busy and I know everyone’s experience is different.
I don’t agree with not being able to talk about politics on this forum anything that impacts our endometriosis should be talked about. Also given that we were all encouraged to take part in a survey recently for a government petition to highlight the concerns with endometriosis understanding, support and treatment, I feel it is relevant. I’m sure we all support the NHS and that’s why we need the government to provide the support and respect it deserves.
I had my first treatment through the NHS via A&E. it wasn’t a good experience. I was told to go home until a nurse intervened and then it turned out in fact I had to have an emergency operation. I was then sent home with no explanation. at my follow up six weeks later I was told I’d been booked in with the wrong doctor and should come back in two months. At this point I still didn’t know anything . After insisting to see someone they found my operation file and it was empty. They couldn’t tell me anything. I saw a private doctor who was surprised I could be in pain given that I’d recently had surgery. After the operation turned out the endometriosis had not been removed. I’d go so far as to say I don’t know if I’d still be here if it were not for the private treatment I’ve received over the years . Endo affects you physically but the mental health issues due to the impact endo has on your whole life is devastating. I was in a bad way. being able to talk it through, knowing that I could contact someone made a big difference. Sorry for the long answer to your post, it’s an emotional response knowing how things could have been had I not been this fortunate. Best wishes you. x
Our nhs is highly valued and I have to say, steps up a delivers generally when it's a matter of life and death. Two years ago my stepfather was rushed to hospital with heart problems and had life saving open heart surgery. He wouldn't still be here today if it weren't for the nhs.
That said, it is undoubtedly letting down people with chronic, painful but non lethal conditions. We are left suffering in unbearable pain, for months, years at a time. Our lives severely impaired, at times left in ruins. Many struggle to complete basic daily tasks, and are often forced into unemployment or early (unwanted ) retirement. Our sickness and disability benefits system is a completely broken mess so often we can't even get the basic financial assistance we need. Little wonder we end up suffering from mental health problems like depression and anxiety. It would be seen as cruel and inhumane to let an animal suffer a similar life. But for humans it's "OK". People may say that I'm attacking the NHS, I'm not, far from it. What is needed is for it to be funded to be fit for purpose. If that means we all pay a bit more tax, so be it. I'd happily pay more tax in exchange for a system that works to treat all conditions and all people equally. That was what the nhs was created for.
I totally agree. Currently been waiting since May 2019 after having my laparoscopy cancelled in March for covid. It wouldn't have hurt anywhere near so much if I hadn't already been waiting 10 months (and to top it all off, because I've had to move back in with my parents since for financial reasons, I now have to start all over again on a new waiting list at a new hospital 😭). The NHS system is fantastic but failing people like us and leaving people suffering unnecessarily, and many of the reasons why are political (not enough funding/investment in gaining and retaining staff etc). It makes me so angry that a government would allow this to happen. I happen to be a leftie like you but putting this aside, I'm being really let down by this system and that's the key point here, whether you think the solution is more taxationor not I think we can all agree there's a problem! I love the NHS but we need and deserve better care and hospitals alone can't provide it without government support. Everything in our lives, including our healthcare, is affected by politics, and we need to make our voices heard politically or the issues faced by those in chronic pain will be forgotten about.
I think I’m lucky, I got the treatment I needed through NHS.
That's wonderful to hear! I was starting to think that no one did - pretty much everyone who has replied so far have said that there has at least been some elements of treatment that they had privately. I hope your treatment was successful?
Yes eventually. After many years of pain and heavy bleeding I finally pushed to see a gynaecologist. The first op was to diagnose endometriosis and fit a mirena coil. My body expelled the coil because I’m such a heavy bleeder, so went back to gynaecologist and I was offered hysterectomy, endometrial ablation (removal of womb lining through burning) and medical menopause. I chose endometrial ablation. So pleased I did! Very successful - no bleeding now at all! Just some pain left once a month (not in womb) but manageable with normal painkillers. I just wish I’d pushed to see a gynaecologist years ago!! I tried alternative therapies first but none of them worked.
I'm glad to hear that you're doing better as a result of the treatment, but I don't think I'd be being fair if I didn't tell you of my own experiences. Unfortunately your story sounds very familiar to me. I had mirena coil fitted around age 24 to control heavy bleeding and pain. Like you, it didn't work for me. My endometrium grew on the coil and it became enbedded in my uterus. I had to have it surgically removed. I then had depot contraceptive injections for a few years before coming off them aged 28 to try for a baby. My daughter came along the following year, but the post partum bleeding lasted for over 2 YEARS. Eventually I had an ablation at age 30. All was fine for about 6 or 7 years, then all symptoms came back, worse than ever before. I have been told I have "late onset endometrial ablation failure", probably due to having the procedure too young (they now no longer perform it in women under 40 routinely, though the minimum age for ablation is now 35). I really hope that you are older than I was when I had the endometrial ablation done...! The risks of later complications were not explained to me at the time. I am now facing a total hysterectomy in 2 weeks time at age 39, having experienced about 3 years of deterioration from when the pain and bleeding returned. I sincerely hope that the same thing will not happen to you, but hopefully you were older when you had your ablation?
Oh wow I hadn’t heard of this before! Sorry it’s been so awful. I am 47 so I think it will be ok for me because I’m in peri menopause. But thanks for warning me!
Interesting you say about the depo. I had uncontrolled bleeding after coming off the depo and ended up in hospital needing a blood transfusion. I was 28 then.
My ablation was done aged 38 but it only lasted 2 years and then needed the hysterectomy, it’s a short term fix which was good when it lasted. x
I went private a couple of years ago as I just wasn't getting answers from the NHS. However my private treatment has been quicker and more effective, so I can't say that it wasn't a good idea.
The NHS do an amazing job and I have nothing against them. It was just more convenient for me to go private due to time constraints and a wider range of treatment options.
Hello.
I agree with your post, it took 13 years for me to be diagnosed on the nhs and have had four operations so far (nhs & private).
I was fobbed off and ignored and told I was imagining things, when in fact the disease has obliterated my insides and now I’m infertile with no children and chronic daily pain, nerve damage, bowel damage and needing to pee 40+ times a day and been signed off work since December.
I had no choice other than to go privately to get the attention and care required.
My private gynae endo specialist also works for the nhs so he sometimes puts me through for certain treatments on the nhs but it’s so much quicker being referred for it privately.
I’ve now been told the only surgery option left is a total hysterectomy including remaining ovary but this would likely make my nerve pain and bladder damage worse. So bit stuck really.
Hope that makes sense.
Best wishes to you Xxx
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