In response to my last blog post, Shari sent me a comment (below), and my response to her became a blog post on it's own, hence this "part 2".
Thank you all very much for your sympathy, and Shari for your article. I have been contacted by readers about their own experiences with endo from time to time over the past year and it's just amazing for me to hear from so many women who are all suffering.
I post my experiences here because it's my simple hope that someone looking for information might find what I've written and know that, though I offer no solid answers, they aren't alone. Every article that I can point to from within my blog or blog comments are greatly appreciated and enthusiastically welcome. There are a lot of bewildered and scared women out there who feel very alone (I know I have felt that way, deeply and sorrowfully) and that is an absolute failure on the part of the medical profession.
Your article is wonderful and to the point, Shari, and there is a lot of good information there which I would encourage anyone who might be looking for a good, brief summary about endometriosis, it's cause and a course of action, go have a read, please. And as you said therein, Shari, there is no magic pill and doctors are not God, and that is very true. But my frustration lies not in the inability of a doctor to throw a switch and cure me. What frustrates me is the lack of communication between doctors and patients about these issues, and on so many issues around women's health, living with chronic pain, or even sexual health. It is, overall and in general, a major problem.
I have blamed myself on many occasions for not asking the right questions of my doctor. But, in my own defense, finding the right questions to ask is like searching on Google for the answer to a technical computer problem: you have to know what the problem is called in order to get anywhere near the answer to the question, and often you can't properly form the question unless you know the technical identity of the problem. It's a massive catch-22, women's health, in so many ways.
I was recently watching one of my favourite films of all time, Caro Diario, directed by Nanni Moretti, which is a film in three chapters. The final chapter is about a year he spent trying to find out why he had a strong itch that he couldn't get rid of, he was losing weight, and had night sweats. After seeing an army of dermatologists, immunologists, chinese medicine practitioners, massage therapists and other specialists, AND having been told that he had inoperable sarcoma (cancer) around his lungs, it turns out that he had a lymphoma that was completely treatable. His parting message is that doctors talk a lot but they don't really listen. He also says that the best thing one can do every morning is have a glass of water before breakfast.
Like Shari, and even Moretti, I am a big advocate for taking your health into your own hands and minding what you put into your body. I also take a glass of water when I wake up, sometimes more if I can manage, before I put anything else into my body. Water, in my mind, is fundamental and more important than most people within or without the medical profession will say, and for me it is the first thing I know I can do to improve my body's ability to function. Drink more water. Always. no matter what is wrong with you. Work from there.
Aside from that, everyone's path to wellness is so personal and individual, it's easy to understand on that level why the medical profession hasn't been able to pin down any answers that work for everyone with a similar complaint. That doesn't, however, diffuse the frustration in a woman who lives with random, sometimes acute pains in her belly which force her to alter her behaviour (as in decide not to go out for a scheduled meeting, etc.).
For those seeking more information, I have written much more about my surgeries and my endo and offered opinions about the things I can do to help minimise the impact it has on my body.
I was in tears last night when I sat down to dinner and was overcome with a sudden pain in my belly which made me yelp. I cried, but I had to admit to my partner that I'm more scared than in pain. The pain can be dulled with a pill. The memory of being cut open several times is the thing that frightens me the most. Today I feel drained and very low, and worried above all. As the surgeon who has worked on me in the past is away on holiday, I'm going tomorrow to the clinic which fitted me with my Mirena to have a smear and a consulation. I'm reassured that though they don't have ultrasound facilities on the premises, they can refer me out to get more scans if they feel it's necessary. I feel like it might be yet another beginning of a rather long path to finding out what's wrong this time, but at least I'll be seeking an answer, and that's the hardest thing for me to make myself do.
Thanks again, all of you.
Sorry to hear of your pain. A fellow reader & friend led me to your site. Check out my web post, Endometriosis, The Pain From Within at http://sengelmohr.blogspot.com and see if there is any info that may help.
Good luck in the future,
Shari
Thank you all very much for your sympathy, and Shari for your article. I have been contacted by readers about their own experiences with endo from time to time over the past year and it's just amazing for me to hear from so many women who are all suffering.
I post my experiences here because it's my simple hope that someone looking for information might find what I've written and know that, though I offer no solid answers, they aren't alone. Every article that I can point to from within my blog or blog comments are greatly appreciated and enthusiastically welcome. There are a lot of bewildered and scared women out there who feel very alone (I know I have felt that way, deeply and sorrowfully) and that is an absolute failure on the part of the medical profession.
Your article is wonderful and to the point, Shari, and there is a lot of good information there which I would encourage anyone who might be looking for a good, brief summary about endometriosis, it's cause and a course of action, go have a read, please. And as you said therein, Shari, there is no magic pill and doctors are not God, and that is very true. But my frustration lies not in the inability of a doctor to throw a switch and cure me. What frustrates me is the lack of communication between doctors and patients about these issues, and on so many issues around women's health, living with chronic pain, or even sexual health. It is, overall and in general, a major problem.
I have blamed myself on many occasions for not asking the right questions of my doctor. But, in my own defense, finding the right questions to ask is like searching on Google for the answer to a technical computer problem: you have to know what the problem is called in order to get anywhere near the answer to the question, and often you can't properly form the question unless you know the technical identity of the problem. It's a massive catch-22, women's health, in so many ways.
I was recently watching one of my favourite films of all time, Caro Diario, directed by Nanni Moretti, which is a film in three chapters. The final chapter is about a year he spent trying to find out why he had a strong itch that he couldn't get rid of, he was losing weight, and had night sweats. After seeing an army of dermatologists, immunologists, chinese medicine practitioners, massage therapists and other specialists, AND having been told that he had inoperable sarcoma (cancer) around his lungs, it turns out that he had a lymphoma that was completely treatable. His parting message is that doctors talk a lot but they don't really listen. He also says that the best thing one can do every morning is have a glass of water before breakfast.
Like Shari, and even Moretti, I am a big advocate for taking your health into your own hands and minding what you put into your body. I also take a glass of water when I wake up, sometimes more if I can manage, before I put anything else into my body. Water, in my mind, is fundamental and more important than most people within or without the medical profession will say, and for me it is the first thing I know I can do to improve my body's ability to function. Drink more water. Always. no matter what is wrong with you. Work from there.
Aside from that, everyone's path to wellness is so personal and individual, it's easy to understand on that level why the medical profession hasn't been able to pin down any answers that work for everyone with a similar complaint. That doesn't, however, diffuse the frustration in a woman who lives with random, sometimes acute pains in her belly which force her to alter her behaviour (as in decide not to go out for a scheduled meeting, etc.).
For those seeking more information, I have written much more about my surgeries and my endo and offered opinions about the things I can do to help minimise the impact it has on my body.
I was in tears last night when I sat down to dinner and was overcome with a sudden pain in my belly which made me yelp. I cried, but I had to admit to my partner that I'm more scared than in pain. The pain can be dulled with a pill. The memory of being cut open several times is the thing that frightens me the most. Today I feel drained and very low, and worried above all. As the surgeon who has worked on me in the past is away on holiday, I'm going tomorrow to the clinic which fitted me with my Mirena to have a smear and a consulation. I'm reassured that though they don't have ultrasound facilities on the premises, they can refer me out to get more scans if they feel it's necessary. I feel like it might be yet another beginning of a rather long path to finding out what's wrong this time, but at least I'll be seeking an answer, and that's the hardest thing for me to make myself do.
Thanks again, all of you.
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