I can't begin to comprehend what you must go through with this condition. I struggled with chronic period pain the whole of my reproductive life. When I hit menopause I was overjoyed never to have to face it again. My heart goes out to you and all women suffering this terrible illness. I really do hope things get easier for you.
Emma - have you ever tried acupuncture. I am sure you have tried everything for your pain. I would have done. I know an amazing women called Sue Branch http://www.suebranch.co.uk/ - we talked about pain a lot today when I went to see her. She is very honest and if she can’t help you she will and if she can’t she will say. I am sure you receive suggestions all the time so I am sorry to add to those that have done so already. I just thought I couldn’t not. Pain, constant pain or intermittent pain is horrible. It’s sucks the life and energy out of you just trying to do the everyday things you need/want to do. She’s based in Weymouth so not near. She is truly remarkable. I hope you don’t mind me writing this but living with pain is not sustainable. X
Sympathies for anyone living with the kind of pain you describe, Emma. Tracey Emin's exhibition sounds extraordinary. Sorry to have missed it – thanks for giving us a glimpse of it here.
Yet so many of us live in the grey. I remember sobbing on a male gynaecologist when my uterine bleeding made it impossible for me to get from home to work (a 1 hour commute) without needing to buy new clothes at Waterloo station. Super tampax and pads could do nothing to stem the haemorrhaging. When I fell apart on the consultant after finally getting an appointment, his response was 'well I can't examine you while you're hysterical'. I vowed that man would never be examining me at all.
I exist in a different grey soup to the one that you do, but I know how it feels to live with constant and variable pain. Pain that is ignored by the medical profession, and no doubt bores all of those close to us except the truly special ones. The pain of constantly trying to put on a brave face when you need to cry; and the contrasting relief and guilt at the need to hide away and cocoon, hoping it won't lose friends, or a career. Your writing is brave and brilliant, although that is probably little comfort on those hard days. Know you are shining a light, and making us all feel more visible. Thank you x
Thank you for this post. I have been following your activism on endometriosis and adenomyosis for a while. You have helped raise the profile but it still seems a relatively neglected disease complex by the NHS, as starkly illustrated by the dreadful waiting list figures for gynaecology services. My stepdaughter was (and continues to be) very badly affected and also had a torrid time with subfertility and IVF complicated by endometriosis cysts on her ovaries. Happily she has now two gorgeous children.
The NHS “service” was very poor, more shameful for me as a (now retired) NHS GP.
There may be some hope on the horizon with the advent of DCA, anti Interleukin 8 blocking antibody AMY109 (trial ongoing at Norfolk and Norwich University Hospital with encouraging early results), relugolix (alone or with additional progestogenic hormones) but NICE guidance updated this month seems to be strangely quiet on these treatments and whilst suggesting early investigation by ultrasound and MRI it is silent on the limited access to these scan technologies.
Is this even on Wes Streeting’s radar? Strange how Amanda Pritchard appears so disengaged from women’s services (including the catastrophic collapse in maternity services). Please do keep trying to boost awareness with service commissioners -does anybody even know who they are these days?
This post means a lot to read - I was sad to miss this brilliant exhibition but follow Tracey Emin on Instagram and value her raw honesty about living with chronic pain. It also makes me think of about the inherent fear that comes with a condition like endometriosis. The fear that even when going through a “good patch”, a bad one is just around the corner. And for me, the fear around fertility. One thing that I think posts like yours and exhibitions like Emin’s do is make it easier to not be as fearful of people’s misunderstanding what it means to experience pain. I’m grateful for that.
I can't begin to comprehend what you must go through with this condition. I struggled with chronic period pain the whole of my reproductive life. When I hit menopause I was overjoyed never to have to face it again. My heart goes out to you and all women suffering this terrible illness. I really do hope things get easier for you.
Emma - have you ever tried acupuncture. I am sure you have tried everything for your pain. I would have done. I know an amazing women called Sue Branch http://www.suebranch.co.uk/ - we talked about pain a lot today when I went to see her. She is very honest and if she can’t help you she will and if she can’t she will say. I am sure you receive suggestions all the time so I am sorry to add to those that have done so already. I just thought I couldn’t not. Pain, constant pain or intermittent pain is horrible. It’s sucks the life and energy out of you just trying to do the everyday things you need/want to do. She’s based in Weymouth so not near. She is truly remarkable. I hope you don’t mind me writing this but living with pain is not sustainable. X
I don’t mind at all- thank you x
Emma, this is so brilliantly written. Cuts through deeply, just like pain. Thank you.❤️
Thank you for continuing to talk about this. Change only happens when people are vocal 💪
Emma - a great post, as always. Am sorry I missed the exhibition.
I’m so glad you wrote this. I’m sure you’re a voice for many. Sending you love and best wishes for better health x
Sympathies for anyone living with the kind of pain you describe, Emma. Tracey Emin's exhibition sounds extraordinary. Sorry to have missed it – thanks for giving us a glimpse of it here.
Yet so many of us live in the grey. I remember sobbing on a male gynaecologist when my uterine bleeding made it impossible for me to get from home to work (a 1 hour commute) without needing to buy new clothes at Waterloo station. Super tampax and pads could do nothing to stem the haemorrhaging. When I fell apart on the consultant after finally getting an appointment, his response was 'well I can't examine you while you're hysterical'. I vowed that man would never be examining me at all.
I exist in a different grey soup to the one that you do, but I know how it feels to live with constant and variable pain. Pain that is ignored by the medical profession, and no doubt bores all of those close to us except the truly special ones. The pain of constantly trying to put on a brave face when you need to cry; and the contrasting relief and guilt at the need to hide away and cocoon, hoping it won't lose friends, or a career. Your writing is brave and brilliant, although that is probably little comfort on those hard days. Know you are shining a light, and making us all feel more visible. Thank you x
Thank you for this post. I have been following your activism on endometriosis and adenomyosis for a while. You have helped raise the profile but it still seems a relatively neglected disease complex by the NHS, as starkly illustrated by the dreadful waiting list figures for gynaecology services. My stepdaughter was (and continues to be) very badly affected and also had a torrid time with subfertility and IVF complicated by endometriosis cysts on her ovaries. Happily she has now two gorgeous children.
The NHS “service” was very poor, more shameful for me as a (now retired) NHS GP.
There may be some hope on the horizon with the advent of DCA, anti Interleukin 8 blocking antibody AMY109 (trial ongoing at Norfolk and Norwich University Hospital with encouraging early results), relugolix (alone or with additional progestogenic hormones) but NICE guidance updated this month seems to be strangely quiet on these treatments and whilst suggesting early investigation by ultrasound and MRI it is silent on the limited access to these scan technologies.
Is this even on Wes Streeting’s radar? Strange how Amanda Pritchard appears so disengaged from women’s services (including the catastrophic collapse in maternity services). Please do keep trying to boost awareness with service commissioners -does anybody even know who they are these days?
Integrated Care Boards / Systems? Yeah right.
This post means a lot to read - I was sad to miss this brilliant exhibition but follow Tracey Emin on Instagram and value her raw honesty about living with chronic pain. It also makes me think of about the inherent fear that comes with a condition like endometriosis. The fear that even when going through a “good patch”, a bad one is just around the corner. And for me, the fear around fertility. One thing that I think posts like yours and exhibitions like Emin’s do is make it easier to not be as fearful of people’s misunderstanding what it means to experience pain. I’m grateful for that.