NICE are soon to start developing the new endo guideline. As many of you will know I run an evidence-based UK endo guidance and info group that uses the published UK guidelines, standards and regulations from such as NICE, ESHRE, NHS/NHS England, RCOG/BSGE etc, which we know inside out, to help those with endo on the correct treatment pathways.
The NICE guideline is in need of much change since there are many omissions and errors. We are registered stakeholders in the development of the new guideline. This is a great opportunity to have a big input towards change. I can't give a link but if anyone would like the opportunity to put forward ideas please feel free to message. x
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Lindle
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wow you are a true endometriosis warrior fighting for us all so thank you for not only being an advocate for better care but for helping so many people every single day!! Thank you 🙏🏻
A GP had recently told me to go back on the combined pill because it’s under NICE guidelines, she was quite aggressive with me when I sad a specialist had told me not to because it contains oestrogen which exacerbates it.
I have also had kickback from staying I don’t want ablation only excision for similar reasons.
It would be less confusing and upsetting if everyone was on the same page
As a registered HCP, who has taken 13 years for a diagnosis, awaiting a further two years for treatment. I do have some input if your willing to listen x
Hi, thank you for reaching out on this!My consultant seemed surprised that I wanted to read up on diet and lifestyle changes as he is primarily concerned with helping via surgery. (I have had surgeries but wanted to do as much as possible to help myself) He did refer me to a dietician but this was rejected on grounds on lack of evidence that diet can help endo sufferers. Please can there be a gathering of research so that dietary recommendations can be part of the NICE guidelines (in a concise, clear way) as there are already plenty of books written by doctors on endo diet. If we can't see dieticians this would help, and perhaps it might pave the pathway to have referrals accepted as we are all individuals often with other health problems as well as endo.
Also clear recommendations on avoiding endocrine disruptors and other chemicals and using alternatives.
Thank you and wishing you all the best with your work.
Sorry I am a bit delayed I have only just come out of hospital but have some thoughts to input, I'd appreciate a link if still possible but have also summarised stuff below. I appreciate and admire that you are able to have an input in the new guidelines. I am sure most of the points I will raise you have considered already but these are points that have not sat right with me since last year's diagnosis.
The endometriosis diagnosis section 1.5 ( also within the algorithm flowchart) I feel is open to ambiguity dependant on the practitioner and could be delaying diagnosis. It says consider referral to gynae if there is no response to hormonal treatments. But for woman like me offered the pill from the onset this could be masking symptoms without diagnosis and there may be no open discussions of the potential for endo or other reproductive pathology. I was only diagnosed when the pain became refractory to analgesia and hormonal treatment almost a decade later. This may only be realised in some cases when women want a pill break or when trying to have children thus stop the pill and become symptomatic. Although no practitioner had gone against NICE guidelines there was also no conversation at any point to say this could be endometriosis and to trial hormonal medication to alleviate symptoms, it was just given from the onset when discussing heavy periods or pain. Even if not feasible to refer every case fitting criteria to gynae there should in my opinion be guidelines on discussing possible pathology.
The other concern I have is one you have posted on multiple occasions regarding laparoscopy not being the gold standard and regarding diagnostic imaging. It says consider "transvaginal ultrasound for endometriomas and endo involving the bowel or bladder". But as you have said this requires level 2 sonographers. In my region gynae are using level 1 within a hospital setting. Until there is universal training of sonographers to the appropriate level ( or even just the sliding sign, a crash course in signs of deep endo) within all NHS hospitals going through the algorithm practitioners will end up resorting to diagnostic laparoscopy. Could it say in the guidelines refer for level 2 sonographer specifically? Does this exist nhs?
1.4.2 ( and algorithm) Refer to an endometriosis specialist service if they have suspected or confirmed deep endometriosis involving the bowel or bladder. As we know if sonographers only scan the uterus and ovaries and not the bowel/ urinary tract then this is not possible to confirm. The section regarding MRI says use "to assess the depth of deep endo" thus MRI is also not being used as a diagnostic tool within the guideline for deep endo. This creates a catch 22 - how can deep disease be detected if there is no imaging to begin with? As another post from you from an advanced sonographer (with videos from diagnostic lap had shown) even at lap deep lesions may not be seen. And as per women like me further surgery again with a multidiscipline team.
As per my case there had been no breach of NICE whereby hormonal treatment had been used for several years. Diagnostic laparoscopy had been used after numerous "normal" ultrasounds despite severe symptoms. Deep endo diagnosis was also missed at laparoscopy thus I has paid privately for an mri which found rectovaginal involvement and adenomyosis. I highlight my own cases as per many women on here to show the manner in which NICE guidelines are being met but could be a source of delayed diagnosis. Also as for women like me the failure of diagnosis via imaging has led to diagnostic laparoscopy and now the need for further surgery. A risk for the patient but also a financial and time burden on the NHS for repeat anaesthesia/ surgery.
Regarding the section neuropathic pain relief 1.8.4( also in the algorithm) there is some ambiguity of this to the practitioner. It may lead to the integration of neuropathic modulators or referral to pain management teams before diagnosis. The algorithm reads as trial NSAID, hormonal treatment then refer to NICE guidelines on neuropathic pain within the initial management section. I had been offered gabapentin, ssris etc without a diagnosis.
Section 1.7 Monitoring says "consider" follow up if they have deep disease or an endometrioma over 3cm. This again could be vague and lead to discrepancies in service. It is of my opinion that severe disease should be followed up in a set manner however I appreciate NHS limitations. One idea may be give patients the option to follow up and a guideline for intervals appropriate/feasible listed within NICE. Monitoring should also be clearer post surgery - a fixed post op check following laparoscopy ( even with a nurse initially a week later for example). I had developed complications post surgery but wasn't due to be seen for a month which wasted both GP and A&E time.
Section 19. I agree with one post above regarding updating guidelines to reflect other non pharmacological interventions. Pelvic floor physiotherapy is one important element given the risk of pelvic floor dysfunction from the chronic pelvic pain. It is already available via NHS but may not be known by physicians ( as my own) or offered to patients if not stated within set guidelines.
Finally I have wondered whether the mental health impact of endometriosis will ever be incorporated into any guideline? The severe impact of chronic debilitating disease, pain, infertility etc all in one diagnosis. Could any guideline ever suggest referral to a mental health team or relevant support material ( even in an online context) be an option for clinicians to discuss with all woman with confirmed diagnosis?
Sorry this is such an essay. Hope any of this can help or be an area of reflection. Thank you for all your help and time put in.
You have highlighted some of the most important issues that need prioritising. The NICE guideline as it stands is totally inadequate in my view and needs a major overhaul, not least to bring it in line with the ESHRE guideline. It has to be borne in mind that the new NICE guideline has to be current for at least 5 years so needs to look ahead. The link is facebook.com/groups/1148144...
The link is to a group I run (nearly 9000 members) which is a UK guidance and information resource based on all the UK standards, guidelines and regulations through which we guide members to appropriate care by supplying the evidence they need to quote to their doctors when fighting a losing battle. Essentially we educate doctors through our members with evidence-based files and even writing letters to give doctors. It is a unique resource since we know all of the standards etc that should be applied inside out whilst seeing the experiences of members played out through their endo journey first hand, so can see all of the failures of medical professionals being applied. This enables us to use their experience to determine what changes need to be made so fingers crossed we can have a big impact on the NICE guideline for a start. We put a post on recently to gather up myths still being applied by doctors, both in primary and secondary care but also in endo centres. But I have been gathering up info over a few years so am pretty familiar with all of the failures, but can sometimes be surprised by something new a member has said. Essentially though the group would be for if you neded detailed help with something.
wow that sounds like fantastic work Lindle. Thank you for everything you are doing.
I’m not overly familiar with the NICE guidelines (have read them once or twice) but inclusion of mental health consideration and support for people with endometriosis would be great.
Also the offer of fertility preservation through egg freezing or for those who think they may want to try for a family in the future. I am seeing a lot of women in there 20s diagnosed with Endo having to privately fund egg freezing at the moment.
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