Endometriosis UK
34,733 members30,978 posts

I can’t cope anymore...is private the answer?

Hi guys,

So long story short, I’ve been waiting for a diagnostic +/- treatment lap - was referred back in October last year and after moving Trusts once, in the hope of being seen outside of London sooner, I’ve been told at my preop today the minimum wait is 16 weeks. This was very upsetting for me as I have been in daily pain since October which has had a significant impact on my job (I’ve had 3 months off work and am worried about losing my job), my relationship, friends and just my general outlook on life is reaching rock bottom. I miss being able to go outside and see my friends, beIng intimate with my partner, being able to sleep at night, feeling attractive... Feeling in a very bad place at the prospect of waiting a minimum of 4 months to be seen and effectively losing a year of my life waiting for surgery. I can’t afford to go private however my mum has offered to lend me the money to have this operation done privately. I have very mixed feelings about this for several reasons:

* It’s a lot of money to have to pay back - I don’t have a huge salary - ironically I work for the nhs

* I’m terrified they won’t find anything and I’ll be effectively throwing money away

*I don’t know how long the wait is for private treatment and if it would be any shorter than the wait I’m looking at

* I know very little about the quality of the surgeons, whether I can get a specialist or not and what the general care is like

What I wanted to ask was to those people who have gone down the private route - where can I find more information about who to look at, prices, reputable surgeons and just in general what your experiences of the private system have been - care, timing etc

Would really appreciate anyone taking the time to reply as I’m just at my end. I really feel I can’t cope much more. I feel like my life has been ruined.

9 Replies
oldestnewest

I have x

Reply

I had a private consultation with an endo specialist and unfortunately can’t afford the operation with him as it was £3000 and there’s a chance the endo could return within 6 months.

I went with spire in Manchester and on the website it gives so much info about each gynae and what they specialise in

He was amazing though and I had an hour appointment with him. He definitely knew what he was on about and showed me diagrams (I felt like I was back in biology haha) but I got a better understanding of endo.

Sorry I can’t help you on the surgery side of things but I wish I could afford private as they were amazing. I’m waiting 23 weeks for a lap now on the nhs 🙄

Reply

I am in a similar boat. I have been looking for an answer for 5+ years now. I have eventually decided to go private. If you go private do your research. Also, if you get the right person, I think sometimes you can see a consultant privately who will then perform your surgery on the NHS or any other treatment needed.

I have my first appointment next week so if I remember I will let you know how it goes! But I have been advised to and been researching for a while and I think it's the right way to go!

Reply

I would get reading all the information on a Facebook site called Nancy’s nook. It’s a site dedicated to education about endo and treatment. On that page you will find a file that has lists of surgeons deemed actual specialists (not just because the surgeon says so!). Included are some surgeons from the UK.

For most women, true excision with a specialist means only a 10-15% chance of endo recurring but surgery with someone with less skill means more surgery or ongoing pain.

I’m on the wrong country to give country based advice but I’ve just had my third surgery (and first with an actual specialist). The difference was huge - not just post op but the entire process. It was worth every cent. That happened to be private but it’s not about private and more about surgeon skill.

1 like
Reply

I went private lovely and it was worth it. Unfortunately my endo has returned already but it finally got the doctors listening xxx

Reply

I’m so sorry you’ve reached this point of not feeling able to cope with much more. I got to that point, too. This is such a painful disease and it impacts so many areas of life.

Have you explained to your GP how much it’s affecting your quality of life? Your GP can write to the consultant and ask them to expedite the appointment.

For your own sake, I would consider accepting the loan offer from your mum, even if it means paying her back in small amounts over a number of years, if she agrees. You could be treated almost immediately privately.

Your pain might not bearable for another four months and your well-being and health deserve to be prioritised.

I send a hug and wish you well. x

Reply

If you go private then make sure you get one of the best to make it worth it..not just any local "specialist" they are not all same standard. I also recommend Nancy's Nook for a list of uk specialists amd endometropolis too.I am going to have a diagnostic lap locally and then once i know what i am dealing with choose who to see next.

Message below of £3000 seems cheap for quotes i had were in region of 15-20k!!

Reply

Hi GoldenCat

Thought I’d give you my experience as it’s such a horrible living-in-limbo feeling whilst we wait for the NHS. I’ve had a couple of surgeries, both private. In January I went to see my GP as I’d been having a sickening pain in my lower back/thighs. Then I started bleeding between periods. I couldn’t sleep at night and spent hours feeling sore and very low. There’s nothing worse then being exhausted and in pain at night- it felt like everyone else was asleep apart from me. My GP didn’t really do anything apart from schedule blood tests and suggested I was perimenopausal (I’m 35). So...I made an appointment with my private gynaecologist. Within 2 days I was scanned (transvaginal/pelvic) and they found tennis ball sized cysts on each ovary. If I’d pursued the NHS route it would’ve been a minimum of 16 wks for surgery. Going private with my endo specialist it was a FOUR DAY WAIT. Now granted, it cost £8500 but the private healthcare provider gave us a payment plan that’s affordable. I went for it. I had three nights in hospital and it was like a five star hotel, they were superb. I’m now 10 days post op and I’m feeling GREAT. The summers coming- I didn’t want to waste a second longer being in pain. I want to live. To enjoy life. Not being curled up with the obligatory hot water bottle for months to come. Yep it was a lot of money. But it’s given me a good few months of my life back and that is priceless. My advice? Borrow the money from your mum- my first diagnostic a couple of years ago was about £3000 and I spread the payments xxxx

Reply

I’m sorry you are struggling.

I had my care privately - and it was so quick, hospital was amazing. But I’ve found the aftercare awful. I’ve been put on a treatment after my lap which is causing a horrendous flare up of symptoms and my consultant doesn’t want to know. They may pass but without that input or support, I just don’t know what to do. My GP described it as ‘typical of the private sector’ which is disappointing.

Good luck with whatever you decide - I don’t regret my decision to go privately but I do think there are some disadvantages.

Reply

You may also like...