"Significant impact on wellbeing due to unreliable supply of oestrogen implants"
About: Dr Gray's Hospital / Women's Services Dr Gray's Hospital Women's Services IV30 1SN
Posted by patient321 (as ),
As a patient who has undergone a full hysterectomy at 34 I require HRT as a vital component to my health and wellbeing. This goes much further than protecting my bones from osteoporosis as it is especially important in maintaining my mood and preventing debilitating migraines. Both of these threaten to prevent me working, contributing to my community, and being able to meet my caring responsibilities. These were also the key catalysts for having the life changing operation in the first place and can not be underestimated in terms of life-limiting symptoms, which include suicidal thought and stroke like symptoms.
Since before my operation I have received care under a very approachable, compassionate and knowledgeable consultant who I feel works with me as a true partner in my care – I feel extremely fortunate to have such medical support and would praise his approach in terms of empowering patients. Together we have explored the hormone treatments available, and through trial and error have concluded that I can’t absorb HRT topically and can only receive my treatment via Oestradiol implants. I have received three of these implants in the last year and we now realise I need a stronger dose through the monitoring of my bloods alongside symptom recording.
Unfortunately, administering implants is not straightforward due to challenges out with both of our control. My understanding is that supplies of implants are extremely unreliable and that there is no stock of them at all with which to treat me in Moray. I am therefore currently in limbo, with a hormone level that is causing my negative symptoms which worsen by the week as my levels drop, whilst my consultant does his best to secure some supplies of any dosage just to keep me functioning for the time being.
This is an unacceptably precarious situation to face in terms of my wellbeing and also frustrating for the medial team working to support me - I am unable to plan weeks and months in to the future as I have no knowledge if supplies will continue, and if supplies are found when they will arrive. This situation will not resolve itself as I will need hormone support for potentially another 20 plus years, if not my life course as research in to this area increases. Nor is this situation a minor inconvenience – I can not choose another medication to give me the levels I require, nor do I think I will have quality of life without medication.
I am aware that other NHS boards are challenged in finding stocks, but I also know that some do have them and that private clinics in the UK also have stocks. This very much feels like a postcode lottery in terms of treatment. It also feels like a feminist issue – would supplies of other drugs being in such a precarious supply be acceptable or is it because this is for the treatment of menopausal women who may not feel fully empowered to advocate for better care? It is not cost affective to our society to have menopausal women unable to function fully, self-care and contribute. I am quite sure that without treatment I am a greater financial burden on our health and care system.
Additionally there is the challenge of accessing proper supplies of testosterone medications for women – I have not yet been exploring this as part of my treatment, although I am aware that it is also a key element in healthy hormone function for women and may help my symptoms, but firstly my oestrogen must be addressed and supplies of the medication stabilised.
Going forward from this I would like to ask the local health board to clarify the situation for Oestradiol implants (50 and 100mg) in writing, remedy the supply issue in collaboration with other boards in Scotland and the UK, and secure my treatment allowing me to live a full life.
Again I would like to thank my consultant for his excellent and compassionate care, the team at Dr Grays who supported my hysterectomy operation (especially the pain nurse and the anaesthetist) and my GP for supporting monthly phlebotomy appointments to monitor hormone levels.
I look forward to your response and thank you for taking the time to read my experiences.