I know EXACTLY what you mean. I’ve had all the surgeries, the complicated hormone treatments, the cocktail of painkillers. Last year I had all offending organs removed. While it appears to have solved the pain problem, it has just given me a whole raft of new issues to deal with via surgical menopause. What’s shocked me is not how long it has taken me to get a solution (12 years) but the lack of options. No new treatments in that time, no sign of any on the horizon- what other type of illness would be treated this way?
Sorry you've been through all this too, Lisa. The lack of treatment is absolutely baffling. Imagine if we were saying to men - or people with any other health condition - that the only 'treatment' (because we've not funded it properly, soz) was to remove some vital organs. It wouldn't wash.
Thank you, thank you for raising this issue and writing so eloquently about it. Medical gaslighting and medical misogyny are issues I care deeply about. And it’s not just endo. Menopause, pregnancy issues, childbirth, the mesh scandal, incontinence and just about every medical condition tends to be taken just a little bit less seriously. These attitudes also extend to our instincts as mothers, with women often being put down as ‘anxious’ instead of intuitive.
The only solution is for women to push for more understanding, more research and more excellence when it comes to diagnosis and treatment. But this is so hard when we have an NHS that dismisses quality of life-affecting conditions as ‘normal.’ I’m so glad you got your diagnosis, but I feel your anger at having to wait so long and suffer long-lasting emotional scars because of a lack of being listened to.
I couldn't have put it better Sophie. It's barbaric, really, that so many women only get answers and support after a fight - and that extends to all those other areas you mention. I've just been reading about heart attacks being dismissed as 'panic attacks' or anxiety in women, meaning we're more likely to die from them. We should be angry.
I already am! Statistically women have far worse outcomes in healthcare, and even more so for women of colour. There is also less funding for research and research studies often aren’t done on women, so we only know how common health conditions affect men.
The default body right... studies carried out by men, on the bodies of men. The one that always gets me is that endo is as common as diabetes, which gets about 20x the amount of funding each year.
This is devastatingly powerful. The clarity and authenticity of your writing deeply emphasises the horror and pain of your experience. Many women will relate. Jx
I am sitting here crying at your article. I don’t have endometriosis but apparently the psoriatic arthritis I have had for over 12 years has miraculously got better according to my doctors. I am in so much pain though, I often go home after work and sit and cry. When I tried to get help from a GP two weeks ago, he wouldn’t even let me have a phone appointment. He sent two texts telling me that a Rheumatologist has said I am alright so I must be. I am devastated that there is no one out there to help me. So I carry on looking after 4 very elderly relatives and running a family business with the only bit of advice I ever seem to get from Health Professionals ‘You need to take a bit of time for yourself love or you will have a breakdown’. No sh**t Sherlock! Keep shouting about this.
Thanks so much for sharing this, Claire. It makes me feel seen. As Lisa said in a comment, the lack of treatment options is appalling and scary for endo sufferers. It also makes me sad that, at least in my experience, lots of people don't understand that endo is a chronic illness and how complex it is, that it isn't just done with a surgery.
Hey Claire, thanks for sharing. I too have undiagnosed pain. Apparently it's neither endo or adeno. But after all the tests time and time again still no answers - just more painkillers. Recently I was referred to a gynecologist for what I thought was a return to the issue but the GP had in fact advised I get the Mirena coil even though I had tried it three times with no luck. Plus, after my own research it's not the solution. The consultant to their credit did pivot and has suggested that perhaps as the pain is worse on my right side where I also have some mystery numbness in my leg the two could be related. If not, she suggests drugs to make me go into menopause. The latter seems like the obvious solution (even though I've been told many times it's probably not gyne related!) and I just don't think something so radical would be suggested to a man. Argh!
I know EXACTLY what you mean. I’ve had all the surgeries, the complicated hormone treatments, the cocktail of painkillers. Last year I had all offending organs removed. While it appears to have solved the pain problem, it has just given me a whole raft of new issues to deal with via surgical menopause. What’s shocked me is not how long it has taken me to get a solution (12 years) but the lack of options. No new treatments in that time, no sign of any on the horizon- what other type of illness would be treated this way?
Sorry you've been through all this too, Lisa. The lack of treatment is absolutely baffling. Imagine if we were saying to men - or people with any other health condition - that the only 'treatment' (because we've not funded it properly, soz) was to remove some vital organs. It wouldn't wash.
Thank you, thank you for raising this issue and writing so eloquently about it. Medical gaslighting and medical misogyny are issues I care deeply about. And it’s not just endo. Menopause, pregnancy issues, childbirth, the mesh scandal, incontinence and just about every medical condition tends to be taken just a little bit less seriously. These attitudes also extend to our instincts as mothers, with women often being put down as ‘anxious’ instead of intuitive.
The only solution is for women to push for more understanding, more research and more excellence when it comes to diagnosis and treatment. But this is so hard when we have an NHS that dismisses quality of life-affecting conditions as ‘normal.’ I’m so glad you got your diagnosis, but I feel your anger at having to wait so long and suffer long-lasting emotional scars because of a lack of being listened to.
I couldn't have put it better Sophie. It's barbaric, really, that so many women only get answers and support after a fight - and that extends to all those other areas you mention. I've just been reading about heart attacks being dismissed as 'panic attacks' or anxiety in women, meaning we're more likely to die from them. We should be angry.
I already am! Statistically women have far worse outcomes in healthcare, and even more so for women of colour. There is also less funding for research and research studies often aren’t done on women, so we only know how common health conditions affect men.
The default body right... studies carried out by men, on the bodies of men. The one that always gets me is that endo is as common as diabetes, which gets about 20x the amount of funding each year.
This is devastatingly powerful. The clarity and authenticity of your writing deeply emphasises the horror and pain of your experience. Many women will relate. Jx
Thanks so much. I dearly hope that fewer women will relate in years to come x
I am sitting here crying at your article. I don’t have endometriosis but apparently the psoriatic arthritis I have had for over 12 years has miraculously got better according to my doctors. I am in so much pain though, I often go home after work and sit and cry. When I tried to get help from a GP two weeks ago, he wouldn’t even let me have a phone appointment. He sent two texts telling me that a Rheumatologist has said I am alright so I must be. I am devastated that there is no one out there to help me. So I carry on looking after 4 very elderly relatives and running a family business with the only bit of advice I ever seem to get from Health Professionals ‘You need to take a bit of time for yourself love or you will have a breakdown’. No sh**t Sherlock! Keep shouting about this.
Thanks so much for sharing this, Claire. It makes me feel seen. As Lisa said in a comment, the lack of treatment options is appalling and scary for endo sufferers. It also makes me sad that, at least in my experience, lots of people don't understand that endo is a chronic illness and how complex it is, that it isn't just done with a surgery.
Hey Claire, thanks for sharing. I too have undiagnosed pain. Apparently it's neither endo or adeno. But after all the tests time and time again still no answers - just more painkillers. Recently I was referred to a gynecologist for what I thought was a return to the issue but the GP had in fact advised I get the Mirena coil even though I had tried it three times with no luck. Plus, after my own research it's not the solution. The consultant to their credit did pivot and has suggested that perhaps as the pain is worse on my right side where I also have some mystery numbness in my leg the two could be related. If not, she suggests drugs to make me go into menopause. The latter seems like the obvious solution (even though I've been told many times it's probably not gyne related!) and I just don't think something so radical would be suggested to a man. Argh!