Has anyone else gone private after being totally frustrated with the NHS and how do I go about it to try and get a diagnosis for my 27yr old

She has had Laps done by gynaecologists,adhesions were found and a cyst on her ovary drained but we are being told that she does not have endo !! Despite being on Methadone and Ketamine,she still suffers constant stomach/pelvic,back pain and I would like her to be seen by an endo specialist.

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  • I would like to know that too and what kind of money is involved , not that I could afford it :(

  • Maureen,don't get me wrong,I really cannot afford it either but I cannot bear to see my daughter in such pain,unable to look after her 2 little boys and about to lose her job after being unable to work for the past 2yrs

  • I went private for my second op and yes it was very expensive but it was the best thing I ever done, now I have a consultant who takes me seriously and that in itself is a huge relief!! I'm not saying the NHS are not good, I had my first op with the NHS but I was dismissed after and told I was "cured" little did I know that was complete rubbish!!! Going private was not cheap but the way I look at it is it saved my job which would have cost me a hell of a lot more.

  • Hi, private will get you seen sooner but you don't have to pay private to access an accredited endometriosis specialist. There is a list of all accredited as well as aspiring provisional centres on the BSGE website bsge.org.uk you can ask your GP to refer you for a second opinion. If you wish to go private to speed up the process make sure that your still seeing someone on the lust rather than paying money to see a non-specialist like you've already done. Ideally you could do with doing some research prior to deciding - cysts will just refill again after being drained so they need properly excising if possible. Good luck :-)

  • If your daughter has had several laps and no endo has been found despite presumably different surgeons involved, then it would be most unlikely to be endo causing constant pains. Endo is a condition which is active during periods, and the constant pain side of the illness comes with more advanced disease, deep infiltrating endo that has damaged other organs. And that certainly would be visible in surgery as would scarring and adhesions from it.

    I wonder though, before you pay to go private, if your daughter has heard of or been checked for a very similar condition to endo,

    called adenomyosis or adeno for short.

    adenomyosisadviceassociatio...

    is the website for all the information you will need. It is a hidden disease in the muscle walls of the uterus and much like endo it bleeds each month but the blood is trapped within the muscle like a deep muscle bruise and that is painful and the pain can last a lot longer as the trapped blood is gradually re-absorbed back in to the body, in much the same way as a deep muscle bruise on the thigh would take time to calm down.

    This adeno cannot be seen in a lap op, and is hard to see with most scans too, but an MRI scan while on or just after a period should show up lumps in the uterus wall if there are pockets of blood trapped there.

    This is a gynae condition, but is something your daughter's GP can request an MRI scan to check on, or refer her back to a gynaecologist to do the same.

    The great news is this is a curable condition. because it is contained within uterus muscle only, a hysterectomy just removing the uterus leaving ovaries intact, will get rid of it entirely. The same remedies for reducing or stopping periods that endo ladies use will also apply to adenomyosis as both conditions are depending on oestrogen and the menstrual cycle to be active and bleeding with a period.

    This is a possibility for anyone, when first lap op shows no endo, and definitely something to check for if repeated lap ops are negative for endo.

    It is rarer to have both adeno and endo, much more common to have one or the other.

    But sadly adenomyosis is much less widely known about or checked for.

    The first assumption is endo, but ideally ladies should be checked out for both as a matter of routine when the symptoms point in that direction.

    Please ask you daughter if she was checked for adenomyosis and refer her to that website as it may just be the missing piece of the mystery jigsaw puzzle.

    And it would save forking out to go private too.

    Private consultations cost in the region of £300 a go. Before any work is done.

    You can check for endo specialists on the bsge website as mentioned already, but if she doesn't have endo, and does have adeno then any gynaecology surgeon can remove a uterus to solve that one and it can be done on the nhs or privately.

  • Whilst this info is correct I personally would not be going down the adeno / removing uterus route with a 27 year old before I'd had an endo specialist check again for endo. Many normal gynaes simply aren't skilled enough to see endo and so they often say that thete isn't any. First things first get a second opinion about endo from a specialist who you know is able to see it if its there. They will also be able to look into any signs of adeno as well. You mention a cyst on her ovary - this is sometimes an indicator of more advanced endo and it may be that she has active endo lurking under the adhesions so I personally think its highly likely she has endo but that it has been missed. I think its too early to start contemplating a hysterectomy without having a specialist involved.

  • Thanks very much for your reply.The first sign of anything wrong was when a cyst had allegedly burst over 2yrs ago.Since then,her first gynaecologist had suspected recto-vaginal endo but he transferred to another hospital before doing any surgery.She had a lap done by another gynaecologist in May last year who divided adhesions and drained a cyst on her ovary but I suspect he is not an endo specialist and may have missed endo.Her pain is getting constantly worse(throughout the month)and her pain-clinic have her on the Methadone,Ketamine amongst other things for their diagnosis "Visceral Hyperalgesia".I am not convinced as whatever she has which is causing her pain is now affecting her ability to even walk.We live in Perth and are totally frustrated with the NHS

  • Have you looked at the information on this website;

    wellcome.ac.uk/en/pain/micr...

    It may be helpful to both yourself and your daughter

  • Hi... You can get a consultation private, prices start from £90-£250 then if same gyni does nhs you can be referred bck to him via nhs for op!!

    Your gp will have a list of endo specialists in your area .. Or do your own research find your own.. And get gp to refer you to them!!

    Good luck .. Sorry your daughter is having such a bad time.

  • Paying for the consultation privately (with same surgeon I was to see on NHS) meant I cut out 3 months waiting for my appointment to come through however the waiting for the surgery was still as long which meant I would have had to wait 9 months to a year to have surgery with him on the NHS so the actual consultation only cuts down on the appointment waiting time!! I had a consultation on the Wednesday and then surgery on the Monday, money talks!!! I know it's not an option for everyone but by this stage I already went through so much, they though I had cancer so all the other testing was rushed through on the NHS but once they realised what it was I was just left to it and I was in far too much pain to wait a year, my job is too important.

    If you can afford it its worth every penny.

  • Methadone and ketamine?? Seriously these were prescribed for endo? That's kinda odd for them to give these drugs without other care?

  • Hi if I had the money right now I know where I would go and pay privately but we are not allowed to mention their name. I have been told myself 3 times that my endo has gone by NHS and later on it has been proved that I still had/have endo so if I were you I would take that comment with a pinch of salt. It's highly likely your daughter has endo.... Plus a hysterectomy does not cure endo..... The better gyneas now know that hyster is definitely not a cure for endo... Simply endo needs to be cut out. If it was thoroughly cut out it would never come back. I believe we only get it the once. The problem is that it spreads. Too many people including gyneas think it just keeps coming back but if it is all excised THOROUGHLY it won't grow again. It will only grow again if there is some left behind. X

  • I am very surprised to read she is taking methadone and ketamine??? I have never heard of them being given for endo.

  • Ketamine can cause very serious bladder problems and I can only imagine how this would add to your pain along side endo. I'm really quite shocked.

  • We are being told that she does not have endo(I am still not convinced) but reckon that she has visceral hyperalgesia and that is why the pain-clinic has prescribed her Methadone & Ketamine amongst other things, to try and combat her pain(she still suffers almost constant pain) ???

  • Was the cyst a chocolate cyst? If it was, then she has endometriosis. Also endometriosis can be situated on the underside of ovaries and so can be missed. Also I completely agree that endometriosis can be hidden underneath adhesions.

    Unfortunately adhesions can cause pain without there being any active Endo. Did your daughter have C Sections for her children? If so this could have caused adhesions.

    Adhesions can get cut back... But they will just grow again!

    I was diagnosed with adenomyosis in December when I had an MRI scan. It may be worth asking for an MRI scan to be performed or look at paying for one privately.

    As Petunias said, a hysterectomy at 27 isn't ideal, even if she does have adenomyosis.

    What other investigations has she had?

    Barbara x

  • Thank you for your reply.My daughter actually had a Placenta Abruption during her last pregnancy.All her problems started approx. 1yr later.We have mentioned this to gynae but they did not think it was related.In the last 2yrs she has had 2 laps the last one in May 13 where adhesions were divided and a cyst on her left ovary drained.She has had MRI scans,latest being approx. March 14 following which they requested another one due in 2weeks.Her pain now is almost constant and very severe despite the fact that she is on amongst other things,Methadone & Ketamine.The pain clinic are telling us that her pain is being caused by Visceral Hyperalgesia(nerve-endings)!!!!!!!! She cannot now look after her 2 little boys and will shortly lose her job,she is even finding it difficult to walk due to her pain.Any advice is most welcome.

  • Go private. That's what I have done. It cost £ 6000 for laparoscopic cystectomy and treatment to endometriosis . I borrowed money, was fed up with the nhs and in pain for months. Now it's over.

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