When you are newly diagnosed with endometriosis, it can feel overwhelming because although it is a common disease, it is often misunderstood in the medical community. Most people, including doctors, think that endometriosis is just a bad period and that birth control is going to solve all your problems. I have had painful periods my entire life, and for the longest time, I thought it was normal not to be able to function on your period and that all women went through that. It is normal to feel a little crampy on your period, but it is not normal if it is taking over your life and causing you to miss work or school. Two years ago, I was diagnosed with endometriosis, which I had heard of because it’s a well-known disease, but like any new diagnosis, I didn’t know much about it and had to do my own research. I wasn’t getting much information about the condition from my doctor because my gynecologist is not an endometriosis specialist and told me little to nothing about it. It can be difficult to navigate the healthcare system when you have endometriosis because most people don’t understand it’s a chronic disease and not just bad period cramps. In this post, I am sharing the lessons I have learned while living with endometriosis.
Be prepared to face a lot of stigma at doctor’s appointments– Many people with endometriosis experience a lot of debilitating pain and have to take prescription-strength pain medication because over-the-counter stuff does not touch endometriosis pain. Most people with endometriosis have prescription-strength pain medication, but it doesn’t always work and sometimes does nothing for your pain. I experience debilitating period cramps two weeks out of the month, and my prescribed pain medication hardly touches the pain most of the time. Gynecology appointments can be frustrating when you live with endometriosis because most general gynecologists are not endometriosis experts and make you think that birth control is going to solve all your problems. Birth control can help some people get pain relief, but it’s not a safe option for everyone, and some people may see no improvement in their pain while taking birth control. Be prepared to face a lot of stigma at doctors’ appointments if you live with endometriosis, because most people think it’s just a bad period, and don’t be afraid to advocate for your needs.
Do your own research- When you are newly diagnosed with endometriosis or any medical condition, it is important to do your own research because you will likely face stigma at doctor’s appointments, and the only way you will get good care is if you advocate for your needs. I was not given a lot of information about endometriosis when I was diagnosed, and my doctor didn’t tell me what it was or the damage it can cause if left untreated. The only reason I know that is because I did my own research, and everything I know about endometriosis, I did not learn from doctors. Do your own research and educate yourself on the condition because it will be easier to advocate for your needs when you know what you are talking about.
Eat as anti-inflammatory as you can- When I was diagnosed with endometriosis, I knew I was probably going to have to make some lifestyle changes to feel better. I didn’t know where to start because doctors don’t tell you anything, and all they want to do is prescribe birth control or pain medication, which can help, but is not a solution. Whenever I have a new diagnosis, the first thing that I look at is my nutrition because the food you eat can either support your pain or make it worse. There is no cure for endometriosis, and you will not cure yourself by eating healthy, but you can slow the progression when you eat as anti-inflammatory as you can. Sometimes I will eat things that are not anti-inflammatory because you have to live a little, but I do try to eat that way most of the time. Doctors often won’t tell you how much you can improve your pain by simply making healthier choices. Eat as anti-inflammatory because pain medication can have a lot of side effects, and you don’t want to be too dependent on it.
Track your symptoms- Endometriosis is an invisible disease and you are not going to know someone is struggling by looking at them. It can be difficult for doctors to understand pain they cannot see and you are more likely to be dismissed when you don’t look like you are in pain. If you aren’t sleeping well because of pain and have a fitness tracker to prove that, bring it to your doctor’s appointment because doctors love data. Doctors often respond better when you bring them data that shows you aren’t imagining your pain.
If you are struggling, see an endometriosis specialist– If you are struggling with pain and your gynecologist is not giving you anything that helps in even the slightest way, you might want to consider looking for an endometriosis specialist. A general gynecologist is not an endometriosis expert, and if your gynecologist delivers babies, they are likely not an expert in endometriosis because it’s a complex disease. Some people with endometriosis may benefit from surgery, but not everyone is a candidate for surgery because some people can manage it without surgery. Find a specialist who specifically treats endometriosis if you are struggling, because they will be more helpful than a general gynecologist.
Work with your pain, not against it- Endometriosis sometimes can go undetected for years because it doesn’t always cause pain, but it can cause debilitating chronic pain for some people. Chronic pain takes so much from you, and sometimes people try to ignore their pain and do things in the same way that they would if they didn’t have chronic pain. When you have chronic pain, you may have to make some changes in your life because people with chronic pain don’t have as much energy as those without chronic pain. It is hard to accept that there are some things that you used to be able to do that you no longer can because it flares your chronic pain. I was in denial of my chronic pain for a long time and tried to ignore it and do things at the same capacity as I would if I didn’t have chronic pain. It is so important to accommodate your life for your pain and work with it, not against it. If you are always trying to push through pain, you will fail every single time because chronic pain is not something that you can ignore. You will feel so much better when you are realistic with what you can do and work with your pain instead of trying to fight and pretend it’s not real.
When you have endometriosis, doctor’s appointments can be very frustrating because doctors often get very little training on endometriosis and know very little about it. I have only known about my endometriosis for about two years, and one of the things I have learned while navigating this condition is how much more awareness we need. It takes around seven to ten years to find a doctor that listen to you, and by the time you do actually get treatment, severe permanent damage has been done that may have been preventable. Endometriosis is a frustrating condition to live with, but because of it, I am more aware of how much stigma there is, and it made me want to advocate more for patients. I will never stop advocating for endometriosis until I stop hearing people say it’s just a bad period and all women experience cramps. What lessons have you learned while living with endometriosis? If you liked this post, please leave a comment below and share it with your friends.
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