Thank you for sharing your story so beautifully and honestly. As I was reading, my blood boiled in rage with yours at the sheer arrogance and insensitivity you have suffered on top of the unimaginable pain and the impact it has had on your life. I am so sorry that you have experienced this, and that the daily battle continues. But please know that you are utterly wonderful - your Cromwell textile work is exquisite and I like to think that Hilary is smiling on you with every stitch. You have proven that endometriosis is not only "survivable" but, like Hilary, you have flourished. You have shone your unique, beautiful creativity into our lives - and they are brighter, and better for it. Keep shining X
Tracey, lovely Tracey, you make me cry (in a good way) with your words. Thank you for your enthusiasm for my stitching - it was a real pleasure to show it to you, and you are always welcome in my studio!
Thank you for sharing this very personal - and hugely frustrating! - story. I found it very moving and am so glad that you have that photograph of the moment she took your hand and shared some hope. I love this glimpse of the reasons behind someone else's connection with a shared fascination.
Thank you for sharing your story and I am so sorry that you are having to go through all this even after taking what you thought were the required steps for your body. I suffer from chronic pain too, (not endometriosis) and it affects everything in my life, but I am not sure I can complain, not sure if when people tell me that there are others who have it worse than me, it is true. So I have learnt to put up with it and just carry on with life.
So when you write about what people expect of you, how rudely they approach you with questions without having any understanding of what you are going through, I get it.
I didn't have this book by Mantel on my to read list, but I now do, thanks to your great post!
Good luck Supriya. I hope that you find Giving up the Ghost of use - and be kind to yourself. Chronic pain can really take it out of you, as you will know, and it’s exhausting.
So beautifully written (and enraging...), thank you for sharing. And thank you for the reminder of how unbelievable Hilary's power is; I'm glad I'm not alone in feeling it.
Thank you for your beautiful impassioned writing. You share your pain so eloquently. Giving up the Ghost was the first book of Hilary Mantel's I read, and I found her strength and intelligence and sheer determination to find answers and LIVE so inspirational.
Why are women so often not believed by doctors? I have my own ghost that I carry (MS) not much pain but the heavy drag of fatigue and cognitive dysfunction.
I am soon to have a hysterectomy myself after a biopsy showed pre cancerous cells (I've also survived breast cancer). Can I ask why you chose not to have key hole surgery? I think this decision is one I will need to make soon.
I am so sorry to hear about your health issues, and hope you are doing ok. I chose not to have keyhole surgery because I was advised that there was greater risk of blood transfusion, which I didn’t want. This was 20 years ago so things may have changed so please check what the current advice is. Lots of luck.
I am awestruck that you write so eloquently about such a painful, personal subject. I am raging at what you were made to endure and the sheer arrogance of the men who thought they knew better than you about your body and your life. I am so glad you got to meet Hilary xx
I adore you. Your Cromwell project, yes...but YOU, moreso. I've shared this w/ you before, but...
I so very much understand *some* of what you have experienced. After my hysterectomy (after cancer treatments) I also learned they took my cervix -- which was not planned. I was told, by a young male resident, "You had textbook organs; really nice!" Rather than awkwardly discussing my body parts, I wish he'd warned me about the abrupt, somewhat debilitating symptoms of surgical menopause and given me a heads up on how long I might be experiencing them.
Thank you for sharing your beautiful stitching, but thank you mostly for your humble honesty. Rage on, and know I'm raging alongside you in solidarity...I am so happy you were able to meet and speak with Hilary -- I am certain she was as impressed with you as you were with her! ♡
Jessica, that is so lovely of you. I am so sorry that you were spoken to in that way after surgery, and that you were not given information that might actually have been useful. Raging alongside you in solidarity also.
So many women are told that a couple of paracetamol and a hot water bottle should be adequate. The refusal to take women’s pain seriously and at least investigate is so infuriating.
Bea, I would hug you if I could and if it would make any difference. I rage on your behalf - I think any reasonable woman would. I love that you got to share that moment of connection with Hilary.
Thank you for sharing your story so beautifully and honestly. As I was reading, my blood boiled in rage with yours at the sheer arrogance and insensitivity you have suffered on top of the unimaginable pain and the impact it has had on your life. I am so sorry that you have experienced this, and that the daily battle continues. But please know that you are utterly wonderful - your Cromwell textile work is exquisite and I like to think that Hilary is smiling on you with every stitch. You have proven that endometriosis is not only "survivable" but, like Hilary, you have flourished. You have shone your unique, beautiful creativity into our lives - and they are brighter, and better for it. Keep shining X
Tracey, lovely Tracey, you make me cry (in a good way) with your words. Thank you for your enthusiasm for my stitching - it was a real pleasure to show it to you, and you are always welcome in my studio!
A great post. And oh, Hilary. How we miss her and her words.
Thank you June - I miss Hilary every day.
Good job you couldn't hear my language as I read this. So much of what has been said to you makes me rage. Great writing Bea. xx
Thank you my dear Annie. X
Thank you for sharing this very personal - and hugely frustrating! - story. I found it very moving and am so glad that you have that photograph of the moment she took your hand and shared some hope. I love this glimpse of the reasons behind someone else's connection with a shared fascination.
Thank you for sharing your story and I am so sorry that you are having to go through all this even after taking what you thought were the required steps for your body. I suffer from chronic pain too, (not endometriosis) and it affects everything in my life, but I am not sure I can complain, not sure if when people tell me that there are others who have it worse than me, it is true. So I have learnt to put up with it and just carry on with life.
So when you write about what people expect of you, how rudely they approach you with questions without having any understanding of what you are going through, I get it.
I didn't have this book by Mantel on my to read list, but I now do, thanks to your great post!
Good luck Supriya. I hope that you find Giving up the Ghost of use - and be kind to yourself. Chronic pain can really take it out of you, as you will know, and it’s exhausting.
So beautifully written (and enraging...), thank you for sharing. And thank you for the reminder of how unbelievable Hilary's power is; I'm glad I'm not alone in feeling it.
Thank you Surya - and Hilary’s power does live on through her words.
Thank you for your beautiful impassioned writing. You share your pain so eloquently. Giving up the Ghost was the first book of Hilary Mantel's I read, and I found her strength and intelligence and sheer determination to find answers and LIVE so inspirational.
Why are women so often not believed by doctors? I have my own ghost that I carry (MS) not much pain but the heavy drag of fatigue and cognitive dysfunction.
I am soon to have a hysterectomy myself after a biopsy showed pre cancerous cells (I've also survived breast cancer). Can I ask why you chose not to have key hole surgery? I think this decision is one I will need to make soon.
I am so sorry to hear about your health issues, and hope you are doing ok. I chose not to have keyhole surgery because I was advised that there was greater risk of blood transfusion, which I didn’t want. This was 20 years ago so things may have changed so please check what the current advice is. Lots of luck.
Thank you.
I am awestruck that you write so eloquently about such a painful, personal subject. I am raging at what you were made to endure and the sheer arrogance of the men who thought they knew better than you about your body and your life. I am so glad you got to meet Hilary xx
Thank you Susan, you are so very kind.
I adore you. Your Cromwell project, yes...but YOU, moreso. I've shared this w/ you before, but...
I so very much understand *some* of what you have experienced. After my hysterectomy (after cancer treatments) I also learned they took my cervix -- which was not planned. I was told, by a young male resident, "You had textbook organs; really nice!" Rather than awkwardly discussing my body parts, I wish he'd warned me about the abrupt, somewhat debilitating symptoms of surgical menopause and given me a heads up on how long I might be experiencing them.
Thank you for sharing your beautiful stitching, but thank you mostly for your humble honesty. Rage on, and know I'm raging alongside you in solidarity...I am so happy you were able to meet and speak with Hilary -- I am certain she was as impressed with you as you were with her! ♡
Jessica, that is so lovely of you. I am so sorry that you were spoken to in that way after surgery, and that you were not given information that might actually have been useful. Raging alongside you in solidarity also.
So many women are told that a couple of paracetamol and a hot water bottle should be adequate. The refusal to take women’s pain seriously and at least investigate is so infuriating.
It is absolutely enraging. Thank you for reading.
Bea, I would hug you if I could and if it would make any difference. I rage on your behalf - I think any reasonable woman would. I love that you got to share that moment of connection with Hilary.
Thank you Nicola, that’s very kind of you. Much appreciated. X