I am diagnosed with endometriosis/ adenomyosis and chronic pain, however I am having a nightmare trying to get a referral to an endo specialist on the NHS. I originally had to go private, due to a mess up at the local hospital meaning I would have to wait over a year for an appointment.
I now need to see a consultant again but my GP (on the rate occasion I have been able to see her) has dismissed it and told me I need to see my original consultant, which I can't afford to do.
I am in an area where there is no specialist endometriosis center and I don't want to go to a general gynaecologist because I have had bad experiences of them being ignorant to endometriosis/adenomyosis.
I am on the zoladex implant but have had really bad side effects. However, my GP has told me that I can't come off it until I see a consultant...I am in a rock and a hard place... I know there are endometriosis centers out there, but I have been knocked back without a GO referral or, one the one occasion I managed to get hold of her and she did refer me, because I was out of area.
I know I should change GP, but up to this point she has been very understanding. It is just because she is so busy that I cannot get an appointment! I don't want to go through the hassle of having to explain everything all over again to somebody new who may or may not believe me.
Any advice?
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TattyMia
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So there are two levels of endo 'specialist' - those in secondary care and those in tertiary care. Which applies depends on the severity of confirmed or suspected endo. In secondary care consultants must have a 'special interest' in endo which means additional training in diagnosing and treating stages 1 and 2 and uncomplicated endometriomas (ovarian endo cysts). Ideally these should have sub-specialism in Reproductive Medicine and do laps a lot of the time.
If there is evidence that your endo is stage 3/4 and/or rectovaginal endo then referral is to a BSGE accredited endo centre and this can be by a consultant or direct by a GP. Such evidence will be confirmation of deep endo from a lap, scan or from the feeling of nodules on clinical exam. Referral can also be made to these centres for non-severe endo that is 'refractory to treatment' in gynaecology departments, so this would apply when there isn't evidence of severe endo but there has been no success after treatments in secondary care. Invariably such cases are likely to involve deep endo that has been missed by non-specialists.
An important point is that commissioning is different between the referral processes. In secondary care these are routine referrals commissioned locally by Clinical Commissioning Groups (CCGs) and those to centres are commissioned centrally by NHS England. This is due to complex surgeries being expensive, so they would drain CCG funds quickly and also there are relatively few advanced excision surgeons and relatively few women with severe cases who require these highly skilled services. Services in the tertiary centres in England are called Prescribed Specialist Services, but few GPs seem to be aware of this.
So first of all you need to know if you qualify for referral to a tertiary specialist centre. The NHS treatment specification is below:
Your GP is absolutely wrong saying that you must see your private consultant - it is clear that you must not be disadvantaged in any way on the NHS compared to how you would be treated privately. Also no matter where you are in England (or the UK) you must have equal access to the centres if the referral criteria are fulfilled, and can choose where you go. As mentioned previously, in any event in secondary care you must only be seen by someone with additional training in endo as per the NICE guideline.
This is all quite complicated especially when you have an uncooperative GP who has no idea about all of this and it can get very difficult getting a referral that is your right.
I run a UK endo guidance and support group with lots of files on all the treatment pathways based on UK guidelines and standards if you would like to join. That would ensure that you get an appropriate referral. x
Also whether or not you have zoladex is your choice entirely. [This post has been edited in line with the code of conduct]. You must be given add-back HRT with them to help counteract symptoms which you haven't mentioned so if you are on zoladex without HRT that would be against recommendations.
Note: admin edited my post but it was correct. GnRH agonists are no longer included in the NICE guideline as a routine treatment. The application for which they are still considered appropriate is between a diagnostic lap (when endometriomas are involved and stripped out) and the main excision for severe endo. They can be given for 3 months to reduce the risk of endometriomas recurring prior to the main surgery. But NICE does add a disclaimer.
'Clinicians are recommended to prescribe hormonal add-back therapy to coincide with the start of GnRH agonist therapy, to prevent bone loss and hypoestrogenic symptoms during treatment. This is not known to reduce the effect of treatment on pain relief (Bergqvist, et al., 1997, Makarainen, et al., 1996, Moghissi, et al., 1998, Taskin, et al., 1997).'
Also whether or not you have zoladex is your choice entirely. These are extremely powerful drugs and are not even recommended in the NICE guideline any more. They aim to treat pain not the disease, can only be taken for 6 months so are only ever a temporary fix even if they 'work' and any potential long term negative effects are not known. You must be given add-back HRT with them to help counteract symptoms which you haven't mentioned so if you are on zoladex without HRT that would be against recommendations.
Unfortunately I was in your exact same position. My original gynaecologist was private but would treat NHS then two years after I last saw him I had a flare and by this time was only doing private. Not sure if I did the right thing but I stayed with him and pretty much used my life savings to have my hysterectomy with him. He’s based in Bham and I think they do offer interest free surgery (BMI). Not sure where you live but there’s a Endo centre in Bham at the Women’s hospital and supposedly one in Derby although I didn’t get anywhere with them. It’s disgusting that the best surgeons now only do private leaving millions of us to rely on untrained NHS gynaecologists, of which I’ve had quite a few who have no idea of the disease or what I can do. Your GP has to refer you as there are NICE guidelines they have to follow for Endo that she may not be aware of. Good luck xx
The best surgeons are not only private. The vast majority of the most highly skilled excision surgeons are NHS. Many women are very happy with the Norfolk and Norwich centre. Some of the private only ones are getting terrible reviews and not working to BSGE standards.
Be aware that the list mentioned is not approved in any way and represents just a handful of UK surgeons based on very limited patient feedback - with negative feedback blocked. Clearly to get a true subjective view it is necessary to have balanced information. The majority of our most skilled surgeons are not on the list. The list of excision surgeons recognised in the UK, based on UK standards and supported by Endo UK (who run this forum) is below:
As with all areas of medicine some are more experienced than others, but all must have advanced excision skills.
Excision is the gold standard for deep endo but there are several applications for which laser ablation (vaporization) is appropriate in expert hands and some for which excision is too aggressive. This is confirmed by Dr Camran Nezhat, the world renowned excision surgeon who invented video laparoascopy and known as the 'father''of laparoscopy. His paper is below and also that of Andrew Cook, of Vital Health Institute and renowned US excision surgeon. Please be very aware that what such highly acclaimed excision surgeons say is clearly NOT a scam. The most important consideration is the skill of the surgeon over method or tool and the best surgeons know when to apply which and when. If excision surgery in all cases ensured women would be free from pain after then yes, but unfortunately many women are still in pain, sometimes worse after excision, and it is so important that it is applied appropriately. It is not black and white.
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