I’m getting very upset with the waiting times. It’s been almost 2 years since i first asked my gp for help and up until now I haven’t seen a gynae and even didn’t get any decent painkillers.
I had ultrasound which didn’t show anything even though I have a consistent pain in the around left ovary.
My mum was diagnosed with endo some time ago, so last time when I came to visit her, I took some of her painkillers (ketaprophen) so at least no more monthly pain for me.
I wonder did anyone choose to do MRI /lap privately or maybe overseas ?
Thanks
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You can get an appointment here with a private gynae for about 200 pounds. They can then send you for an MRI which last time I had one was about 600 pounds. This should show you clearly if you have endo and where it is but you need a good sonographer.
Private laparoscopy is really expensive £6000-20,000 depending what needs doing and which doctor. The problem with going overseas is if you have any complications afterwards what will you do ? Say for example you start really bleeding or have an infection or something what do you do if your specialist is a five hour flight away?
Also you will probably feel very delicate and injured fater the op, you probably won't feel up to going on a flight. Also I think it might be hard to know what the standard of treatment overseas might be and whether you would be protected if anything went wrong. Think carefully about it it's a big deal undergoing what could end up being a very big operation and general anaesthetic. Maybe if you have friends overseas and you could stay with them while you recover that might work better. But you can easily get a private gyna app and MRI here soyou know what is going on with your body. Good luck.
I had ultrasound which didn’t show anything despite the fact I had pain at around my left ovary even during the exam (I did have a lot of water as it was requested).
I think I will have a doc appointment here with a gynae, not even sure why. Maybe I can I have a letter in English etc just in case a referral is needed. Hopefully they can refer to an NHS MRI. I’m not keen to spend £600 on MRI.
Obviously, if treating it overseas I will stay to recover for a month at least.
My partner is Italian so I’m thinking to go to either Italy or maybe Western Europe or Australia when I’m visiting relatives there.
It's hard to get endo surgery in Italy I think they only do it in the big hospital in Milan. I was considering it there as covid levels much lower. It might be cheaper there and care is very good. MRI on NHS is a long wait I think the spending on the MRI is money well spent as it will probably mean a better result after op and you might find out you don't even need an op so it could save you the cost of the operation.
Not everywhere in Europe does excision for example in Spain it's not common but I'm sure they do it in Milan and Australia is bound to have good surgeons etc. I think an MRI and private gynae would be way cheaper in Italy. I lived over there for 4 years and my best friend there is a doctor. She was stunned by the rates private doctors charge here.
Some people say ultrsound is better because they can move the wand around and actually feel if parts of you are stuck together but I think that the MRI is effective at spotting deep endo in a wider area.
Blooming marellous you will have to let me know where you got your last lap done that's much cheaper. I paid 8000 two years ago but it was a big big op I have bowel involvment so needed gynae surgeon and bowel specialist. I was quoted 26,000 for a similar op in London but I think the surgeon in London has better success rates. I suppose it depends how comlex it isand how much of mess your insides are in. Prices in London are probably way higher than every where else.
This is me I think if you have family to stay with in Italy it's a good option at least you will get the nicest food while you recover. Hope this is a bit helpful. x
not sure but I think I've read a lot of articles on endo that were from doctors in Australia, you might want to look into that as an option if you are already traveling there
I am so sorry to hear that. It is 3 years for me since I went to my GP saying that I had pain starting again on the rhs of my abdomen. I was diagnosed with endo in 1998 after many failed IVF treatments. Since then I have had many laparoscopies and a laparotomy from 2008 onwards. My last major treatment was in 2012 for stage 4 endo and this thankfully bought me several pain free years ,it was amazing to have my life back. I was told a small amount of endo was left behind as it was too difficult to get without risk to my urethra and it could return.
Since seeing my GP in April 2019, I have had one gynae appointment, theNHS gynae told me the pain could not be endo because I am over 50!He offered ME a choice of 3 treatments and told me to pick one: return to my GP to discuss a way forward, a referral to a pain clinic or a diagnostic laparoscopy. I opted for a diagnostic laparoscopy, I have had 3 pre-op assessment in the last 3 years but have not had any treatment as yet and no support. In this time, the pain has become more and more debilitating. This was the reason I went to my GP as soon as I had any pain, as I did not want to end up bed bound whilst waiting for the NHS treatment which is what happened back in 2010-12 waiting for NHS treatment. I was often away from my teaching job, being put under pressure to quit as I was unwell and couldn't cope with the job.
I have had a diagnosis for the pain I am currently suffering, I have frozen pelvis, this was diagnosed in September 2021. This diagnosis came about thanks to me joining Benenden back in 2012 in the hope I would never have to suffer excruciating pain again while waiting for NHS treatment. Unfortunately, Benenden will not fund the complex operation I need to treat my frozen pelvis so I am back to square one on an NHS waiting list for treatment from the expert I saw privately, thanks to Benenden who got me a private consultation and MRI. If I could have had my treatment privately funded I could have had it done in March 2022!I cannot afford to fund the treatment myself as I am not well enough to work full-time to my economic ability and there is no PIP for this condition as despite being totally debilitating it is not regarded as a disability.
This week has been horrendous, I have been bed bound, had to take a week off my poorly paid less secure job(not well enough to teach anymore).Unable to sleep due to pain, unable to get comfortable. Pain like a belt of crushing pressure, electrical current and stabbing radiating around my waist and back and down my legs. I feel exhausted. I was looking forward to having my grandchildren and only child stay this weekend I have had to cancel it. I have no life, cant go anywhere, plan anything and there is little support while we all suffer in silence. My heart goes out to each and everyone of us and all the partners and family members that support us.
Hope the pain improves soon. Contact your Doctor for stronger pain relief, see if they can refer you to a pain clinic and for CBT while you wait for treatment.( I only found out about this help thanks to a Benenden GP last month). Investigate private health policies like Benenden and Bupa if you can afford it.
Oh I’m truly sorry for what you are going through right now.
This is awful, really awful and the way how women’s is “normalised” by the doctors and not considered carefully is so cruel.
I can’t imagine what you experience being in so much pain for all these years. I mean not just physically but also mentally, it must be very hard.
I myself cry every time I receive my iPhone health message “your period is expected t week” as I know I will be in pain again. And I can’t cope with it any more.
Am so sorry to hear what you’ve been going through.
Whilst most endo unwinds post menopause it’s not been my experience. Adenomyosis and endo can really kick off through the ups and downs of menopause as mine has and surgery for me has been appropriate treatment to help with pain. It’s a myth that it is in younger women only. It can It can appear/worsen in older women, men and even the elderly but it’s rarer. Someone has to be the rarity. So actually I’d take the GPS view with a pinch of salt, a large one at that.
I’ve found Dr Angie Mullers Instagram feed for core recovery programme for dysfunctional pelvis too. She’s worked with a lot of endo cases and it might have some useful pointers ? She’s talking here to a functional nutritionist about pelvic therapy and it’s pretty informative.
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