I've been having a bit of a time of it trying to get appropriate diagnosis and treatment. I really feel I've been messed around and I've long felt I have not been given appropriate/correct information regarding my condition. My confidence in the Drs I've seen has gradually be worn away and after reading my medical notes, I just have no faith in what I've been told or in the treatment that's been offered to me. So, after taking another endo warriors advice and much needed support, I have sent a letter to the head of my nearest endo centre. I got a lot of help writing this as I am really struggling at the moment.
I thought others may benefit from sharing this- either by using what they can of the letter for themselves or for using it to motivate to fight for their own care. I know I've struggled to fight- I find it very hard to be this 'demanding' with the doctors. I've taken out any identifiable info so the Drs and healthboard can't be identified. I hope this helps...
Dear Professor Endo
I am writing to you as I find myself in what seems to be an impossible situation with regards to obtaining appropriate care for severe endometriosis, as discovered by MRI in May 2018. I will provide you with a summary of background information along with my concerns.
My health difficulties began in early 2014, with severe abdominal pain/bloating, severe fatigue and rashes. In 2015 Crohn’s disease, Coeliac disease and IBD were ruled out and I was diagnosed with IBS, which I understand is often the case with women who go on to have severe endometriosis. My symptoms continued and an abdominal ultrasound in December 2015 found 2 fibroids. A blood test revealed elevated CA 125 and because of this finding, in conjunction with my symptoms, I was told by my GP that I showed signs of ovarian cancer and was urgently referred to gynaecology. A repeat CA 125 in January 2016 was further elevated. However, my referral was downgraded to ‘routine’ as ovarian cancer would be highly unlikely and my GP suggested that endometriosis could be another possible cause of my symptoms. I was assessed by gynaecologist, Dr A, in February 2016 and I agreed to a laparoscopy, which I understood would be the only definitive way to rule out ovarian cancer and endometriosis. At the suggestion of my GP, I commenced on the contraceptive pill (Rigevidon) for the 9 weeks leading up to the laparoscopy, which provided an immediate and significant improvement to my symptoms. The laparoscopy was carried out by Dr B in April 2016 and no endometriosis was found but I was found to have a large multifibroid uterus, with a 7cm fibroid on the fundus and an 8cm fibroid entirely filling the Pouch of Douglas, with filmy adhesions of the sigmoid but not tethered to the sidewall. I was told that this finding would not account for my symptoms. As far as I am aware, no biopsies were taken. As no endometriosis was found, I stopped taking the pill. When I had my follow up appointment, I was still enjoying this improvement but this was short lived and did not continue. I believed that all gynaecological causes of my fatigue and abdominal pain had been ruled out and therefore attempted to improve my health using holistic methods.
Later the same year (October 2016), I began to develop hip and back pain and after working with physio for several months, with no improvement, I was referred to orthopaedics (June 2017), which had a 9 month waiting time. A pelvic MRI was carried out (April 2018) and reviewed by musculoskeletal radiologist, Dr C, which found no musculoskeletal cause but did find ‘typical severe endometriosis’, with referral back to Dr B in gynaecology. In view of what I understood to be clear evidence of a presentation of severe endometriosis, I requested a referral to the ‘specialist endo centre’, which my GP gladly did in May this year, but it was rejected on the grounds that referrals must made by a consultant and I was advised to wait until I saw Dr B.
I was contacted by Dr B by letter on 15th May 2018, informing me that a radiologist specialising in endometriosis was reviewing my MRI scans. This was followed up by another letter on 31st May 2018, informing me that I was required to have a second MRI to obtain more detail. This was undertaken on 7th June 2018 and seemed to confirm the previous findings, with a large 13 cm complex, mixed solid and cystic mass lying within the Pouch of Douglas, arising out of the right ovary, or as a conglomerate right and left ovarian lesion, that is described as ‘a large and chaotic looking endometrioma’ occupying both sides of the hemipelvis that is inseparable from the posterior uterus and sigmoid. I received another telephone call from Dr B on 3rd August 2018, informing me that I had a cyst growing from my right ovary and that I now needed a CT scan to further examine this, in order to plan for surgery. The CT scan was taken on 17th August 2018 and I met with Dr B on 23rd August, where I was informed that I had a highly unusual fibroid with endometriosis, that would be complex to remove and that Zoladex would be the most appropriate treatment. Following this consultation, I researched this treatment option and examined my medical notes and I have several concerns about my diagnosis, case management and treatment plan, that I would like addressed.
My concerns are;
1.That the treatment that has been offered to me is inadequate
2.That my care is not being managed by the most appropriate service
3.That my referral to ‘the specialist endo centre’ was rejected on grounds of the referral coming from my GP.
1.The only treatment I have been offered is GnRH agonists in the form of Zoladex and I am aware that this would be unlikely to ‘treat’ this mass, or any other endometriosis present, in any definitive sense. I have not commenced this treatment until I can better understand the nature of my diagnosis and the treatment options available to me.
Surgery to remove the mass and endometriosis seems to have been dismissed on the grounds of it being anticipated to be complex and no doubt involving the removal of my uterus, which would clearly have a direct impact on my fertility. There seems to have been an assumption that fertility is a priority of mine, which is not the case and I am concerned that my notes repeatedly refer to this, without asking me directly. I have always been ambivalent about wanting a family but chronic illness has taken its toll on me, my career, finances and relationships and my priority now is for my health to improve, so that I can have a better quality of life. Due to pain, I am unable to have sex, and have not done so for 4 years and cannot work or engage in social activities, it seems absurd to assume fertility to be an option for me, let alone a priority. If I had to forgo my fertility for a good chance of a return to good health and an improvement in my quality of life, I would absolutely do so.
There needs to be an open discussion with me about the potential benefits and risks of surgery, so that I can make an informed decision about this. I would like to emphasise that, if surgery was likely to benefit me, I am very clear in my understanding that, due to the complexity of my case, this must only be undertaken in a specialist endometriosis centre and I would not consent to such complex surgery in a gynaecology department.
2.Although I have previously been given a diagnosis of severe endometriosis and this, in itself, meets the referral criteria for the ‘specialist endo centre’, there are other reasons that make it seem illogical for my case to be managed out with the ‘specialist endo centre’. Firstly, the nature of the mass found seems to be baffling for those who have been involved in my case, with such descriptions of ‘chaotic’ and ‘bizarre’ applied; this, in itself, appears to confirm that my case is unusual, complex and perhaps beyond the scope of general gynaecology. Secondly, as far as I can deduce, there appears to have been a conclusion ruling out malignancy and an agreement that I have an unusual and complex presentation of endometriosis. Yet, the consultant managing my case sits within the general and oncology gynaecology service. Thirdly, it seems that my best chance for an improvement in my health is to have this mass surgically removed, alongside the excision of any endometriosis. As my case is clearly unusual and complex, any surgery should be conducted by the most experienced surgeon related to the case, which would be within the ‘specialist endo centre’. The BSGE clearly specify that severe endometriosis should only be treated thorough excision in an accredited specialist centre.
I cannot understand why the management of my case would continue to sit within the general or oncology gynaecology services. I therefore request that management of my case be moved to the ‘specialist endo centre’ and I am offered a review to discuss my diagnosis and treatment options.
If it is the case that malignancy has not been completely ruled out, then this needs to be discussed with me, again, so that surgical options can be explored.
3.My GP attempted to refer me to the ‘specialist endo centre’ in May 2018 but this was rejected due to referrals only being accepted from a consultant. I have been informed that the ‘specialist endo centre’ accepts referrals from GPs within X health board but will only accept referrals from consultants outside the X health board. If this is the reason my referral was rejected, it seems to go against the 2016 RCOG Standards, which required me to have the same access to specialist care as any other woman in the UK. This also goes against BSGE centre requirements, which state that referrals to centres can be by primary or secondary care clinicians. Similarly, the new NICE guideline emphasises that suspected severe endometriosis must be referred to a specialist endometriosis centre, and since the guideline is written for healthcare professionals when treating women when first presenting with symptoms, this necessarily must mean GPs. As it is, I have been left a further 5 months since being rejected by the ‘specialist endo centre’ and therefore not receiving appropriate care for my unusual and complex case.
As I have detailed, my patient journey has been unnecessarily convoluted and lengthy. It seems I am now presenting with an unusual and complex condition that is not entirely understood by the consultants who have viewed my scans. It seems that although malignancy is thought to be unlikely, I am not fully reassured by the way in which this has been managed, as I am aware this can only be definitively ruled out through histology. Furthermore, this is something that has never been discussed with me, I only know of this through reading my medical notes. I have repeatedly been told that malignancy has never been in question, which after reviewing my medical notes, I now know is completely untrue. Despite this, it seems that the most likely diagnosis is an unusual and complex presentation of endometriosis and, as this is having a catastrophic impact on my quality of life, it seems that the most suitable speciality for my case would be within the ‘specialist endo centre’, who would be most qualified to provide the appropriate care for this level of complexity. I wish for my diagnosis and treatment options to be discussed with me in an open manner that allows me to make an informed decision with regards to my treatment.
I am sure you will be aware from the nature of this letter that I have considered my situation at length and that I believe my care has not been appropriately managed. I am well aware of the limited resources available to NHS services and due to this, I would rather avoid lodging a formal complaint and instead for my situation to be examined and any appropriate changes made.