OUR INVISIBLE ILLNESS. How we deal with Endometriosis.
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Date: 2020-02-17
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Comments and reviews: 9
Megan
This was so refreshing to hear someone talk so candidly about their experience with the health care system shrugging off patients. I remember witnessing my mom struggle with doctor's visits and I would always ask why someone who spent so much time in school to help and take care of people just push aside a patient like they are imagining all of their symptoms. I didn't have my first instance of this until I was 25 when I had a have crazy irregular period (like I started, lasted 5 days, paused for a day or two and started again. It took me over a month to see my PCM and I was pushed off that it was all in my head but the problem was due to me not being on birth control. I knew other women used birth control to help with period side effects but this was not the solution for me. I was pushed out without any additional tests or questions, just a prescription and could not schedule another appointment related to this for at least 4 months. I remember walking out of the clinic feeling like crap, maybe even worse then when I walked into the clinic. I feel fortunate that it had stopped a few weeks later, and without the birth control. That day still sits with me whenever I need to go see a doctor, fear that I will be ignored and no one should have to feel that way when seeking medical treatment. Thank you for sharing, it really did make me feel like we're all not alone and that opening up about these experiences is how to get the conversation going.
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This was so refreshing to hear someone talk so candidly about their experience with the health care system shrugging off patients. I remember witnessing my mom struggle with doctor's visits and I would always ask why someone who spent so much time in school to help and take care of people just push aside a patient like they are imagining all of their symptoms. I didn't have my first instance of this until I was 25 when I had a have crazy irregular period (like I started, lasted 5 days, paused for a day or two and started again. It took me over a month to see my PCM and I was pushed off that it was all in my head but the problem was due to me not being on birth control. I knew other women used birth control to help with period side effects but this was not the solution for me. I was pushed out without any additional tests or questions, just a prescription and could not schedule another appointment related to this for at least 4 months. I remember walking out of the clinic feeling like crap, maybe even worse then when I walked into the clinic. I feel fortunate that it had stopped a few weeks later, and without the birth control. That day still sits with me whenever I need to go see a doctor, fear that I will be ignored and no one should have to feel that way when seeking medical treatment. Thank you for sharing, it really did make me feel like we're all not alone and that opening up about these experiences is how to get the conversation going.
reply
Anna
I really recommend everyone to read Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenberry. It discusses the history of female patients in healthcare and how women are stigmatized as hypochondriacs. it also talks about how pain women experience is brushed off as caused from anxiety or stress when normal tests can't find the cause of pain. I'm a pre-med undergrad right now and this book truly changed my perspective on how women are treated by doctors. I saw another comment say, that it took them 4 years to be diagnosed because the doctor said it was all in your head. That explanation lazy science, because they normal tests fail to explain the patients pain. This stigma against women patients is why America has the highest maternal death rates compared to other countries of the same socioeconomic standing It's sad to see, but fight for your health even if your doctor won't for you I usually don't comment on posts, but this issue of the pain is all in your head is larger than we think. I'm very happy to see Tati talk about her endometriosis in an effort to normalize it
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I really recommend everyone to read Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenberry. It discusses the history of female patients in healthcare and how women are stigmatized as hypochondriacs. it also talks about how pain women experience is brushed off as caused from anxiety or stress when normal tests can't find the cause of pain. I'm a pre-med undergrad right now and this book truly changed my perspective on how women are treated by doctors. I saw another comment say, that it took them 4 years to be diagnosed because the doctor said it was all in your head. That explanation lazy science, because they normal tests fail to explain the patients pain. This stigma against women patients is why America has the highest maternal death rates compared to other countries of the same socioeconomic standing It's sad to see, but fight for your health even if your doctor won't for you I usually don't comment on posts, but this issue of the pain is all in your head is larger than we think. I'm very happy to see Tati talk about her endometriosis in an effort to normalize it
reply
Jessica
I spent over a year dealing with intense abdominal pain and doctors telling me to take antacids or anti-inflammatories and I kept saying its not reflux, this is different and Something isnt right. Over and over again and no one would listen. I kept getting the same take some over the counter meds brush off. I remember a month or two before my diagnosis, being in a clothing store with my husband, shaking and having to grab and hold onto a clothing rack because the pain was so intense and overwhelming that if I wasnt holding onto something I would have been in the floor. I was diagnosed with Crohns disease finally after being in chronic pain for what seemed like an eternity. Even drinking and digesting plain water would send my guts into a freak out. No one really knows what Crohns is (outside if the medical field of course) or understands what it puts a person through and I know its not the same as Endo but I understand how you feel and I hope you both stay happy, healthy, and strong
reply
I spent over a year dealing with intense abdominal pain and doctors telling me to take antacids or anti-inflammatories and I kept saying its not reflux, this is different and Something isnt right. Over and over again and no one would listen. I kept getting the same take some over the counter meds brush off. I remember a month or two before my diagnosis, being in a clothing store with my husband, shaking and having to grab and hold onto a clothing rack because the pain was so intense and overwhelming that if I wasnt holding onto something I would have been in the floor. I was diagnosed with Crohns disease finally after being in chronic pain for what seemed like an eternity. Even drinking and digesting plain water would send my guts into a freak out. No one really knows what Crohns is (outside if the medical field of course) or understands what it puts a person through and I know its not the same as Endo but I understand how you feel and I hope you both stay happy, healthy, and strong
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Alicia
Thank you both for sharing this. I have been thinking its time to see a nutritionist for the Endo and this has helped me with that decision. At 22 I had surgery and was diagnosed by my 5th dr and first male dr. At 25 I had a hysterectomy and at 28 (March of last year) had my Fallopian tubes removed due to new research and the location of cysts. To avoid removing ovaries, Im now on Depo and trying to work with nutrition again (was plant based soy free for a year after my hysterectomy. I keep logs of what foods bother me and have noticed adverse responses to meat in general. I would love to know if anyone else has had similar dietary experiences. Regardless of whether its Endo or other invisible physical or mental illnesses, you are not alone and you have what it takes to get through it
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Thank you both for sharing this. I have been thinking its time to see a nutritionist for the Endo and this has helped me with that decision. At 22 I had surgery and was diagnosed by my 5th dr and first male dr. At 25 I had a hysterectomy and at 28 (March of last year) had my Fallopian tubes removed due to new research and the location of cysts. To avoid removing ovaries, Im now on Depo and trying to work with nutrition again (was plant based soy free for a year after my hysterectomy. I keep logs of what foods bother me and have noticed adverse responses to meat in general. I would love to know if anyone else has had similar dietary experiences. Regardless of whether its Endo or other invisible physical or mental illnesses, you are not alone and you have what it takes to get through it
reply
alex300885
I am very lucky to live in a country where health insurance is provided to everyone - even if unemployed. We don't need to think about going to the doctor, you can always get treatment without paying for it for years to come afterwards. It is absolutely mindboggling to imagine that you - and a lot of others - have to endure the pain because your home country doesn't care for you: . Even though I'm off course aware of the situation in the States, it still infuriates me a lot. Thank you for bringing attention to a taboo topic. I don't have endo, but can relate in regards to mental health issues, which is also a very taboo topic here in Austria. All the best to you, Erica and all others with endo
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I am very lucky to live in a country where health insurance is provided to everyone - even if unemployed. We don't need to think about going to the doctor, you can always get treatment without paying for it for years to come afterwards. It is absolutely mindboggling to imagine that you - and a lot of others - have to endure the pain because your home country doesn't care for you: . Even though I'm off course aware of the situation in the States, it still infuriates me a lot. Thank you for bringing attention to a taboo topic. I don't have endo, but can relate in regards to mental health issues, which is also a very taboo topic here in Austria. All the best to you, Erica and all others with endo
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Shalynn
We dont have health insurance right now, and Im struggling with bipolar disorder, depression, and anxiety. I cant afford to go get the rest of the help I need. I am on an anti-depressant which helps ease symptoms. but it doesnt get rid of them. Im working on trying to find some good insurance so I can be the best mom I can be for my kids. Its painful when you cant get off of the couch to play with your babies, or youre so anxious you cant cook supper because the ingredients are too much and youre having a panic attack because it seems too much when its really not. This video means so much to me. thank you for opening up. not cutting that part out. Im so glad I am not going through that alone.
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We dont have health insurance right now, and Im struggling with bipolar disorder, depression, and anxiety. I cant afford to go get the rest of the help I need. I am on an anti-depressant which helps ease symptoms. but it doesnt get rid of them. Im working on trying to find some good insurance so I can be the best mom I can be for my kids. Its painful when you cant get off of the couch to play with your babies, or youre so anxious you cant cook supper because the ingredients are too much and youre having a panic attack because it seems too much when its really not. This video means so much to me. thank you for opening up. not cutting that part out. Im so glad I am not going through that alone.
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Lolly
Took me 17 years to get my fibromyalgia diagnosis. First woman doctor told me I needed a psychiatrist It was a long road, very frustrating and you doubt yourself, thinking you are making it up. I also have chronic fatigue, chronic migraines, trigeminal neuralgia and IBS. All invisible and its hard to communicate to others how you feel when you look healthy. Thank goodness I have a supportive family but it is isolating. I ran myself into the ground taking care of my kids and working. It caught up and it took awhile to recognize I had to take care of myself first in order to be useful. Love to other spoonies
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Took me 17 years to get my fibromyalgia diagnosis. First woman doctor told me I needed a psychiatrist It was a long road, very frustrating and you doubt yourself, thinking you are making it up. I also have chronic fatigue, chronic migraines, trigeminal neuralgia and IBS. All invisible and its hard to communicate to others how you feel when you look healthy. Thank goodness I have a supportive family but it is isolating. I ran myself into the ground taking care of my kids and working. It caught up and it took awhile to recognize I had to take care of myself first in order to be useful. Love to other spoonies
reply
Hayley
What Erica said about listening to your body is so spot on. It took me a little over a year to be diagnosed w SLE Lupus and though not the same, we know our bodies. We can tell when something is not right. These invisible illnesses we often have to be our own biggest advocates. When a doctor tries to tell the symptoms you are experiencing such as extreme fatigue, weakness, muscle pain, etc are all in our head or caused by depression. You have to believe in your own voice and what your body is telling you. And you have the right to 'shop' for doctors and find a better fit when you need to. Don't give up.
reply
What Erica said about listening to your body is so spot on. It took me a little over a year to be diagnosed w SLE Lupus and though not the same, we know our bodies. We can tell when something is not right. These invisible illnesses we often have to be our own biggest advocates. When a doctor tries to tell the symptoms you are experiencing such as extreme fatigue, weakness, muscle pain, etc are all in our head or caused by depression. You have to believe in your own voice and what your body is telling you. And you have the right to 'shop' for doctors and find a better fit when you need to. Don't give up.
reply
Kaity
I am 16 and I started periods around 12 and I have always had horrible cramps, heavy prolong periods, irregular periods. I also suffer from chronic pain. And some doctors kinda believed me and some say its something you have to deal with as a women. I have missed so many days from school because of this pain. I was told I was crazy and put on antidepressants, birth control after birth control. Fibromyalgia pain meds and so much more. I am now almost 17 and still dont officially know if I have endometriosis but I am pushing my doctor to really listen to me and have laparoscopic.
reply
I am 16 and I started periods around 12 and I have always had horrible cramps, heavy prolong periods, irregular periods. I also suffer from chronic pain. And some doctors kinda believed me and some say its something you have to deal with as a women. I have missed so many days from school because of this pain. I was told I was crazy and put on antidepressants, birth control after birth control. Fibromyalgia pain meds and so much more. I am now almost 17 and still dont officially know if I have endometriosis but I am pushing my doctor to really listen to me and have laparoscopic.
reply
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