Disclaimer: This post was written for informational purposes only. I am not a doctor, and it is not a substitute for professional medical advice.
Disabled people often have a lot of health challenges that not all health professionals have heard of, but sometimes you get well-known diseases that some people without disabilities can experience, such as endometriosis. I have been living with constant chronic pelvic pain for a few years now, which got worse when I was on my period, which I thought was normal, and I was recently diagnosed with endometriosis. What is endometriosis? Endometriosis is a chronic disease where tissue similar to the lining of the uterus grows outside of the uterus, which can cause fertility issues. chronic pain and very painful periods. Endometriosis is a relatively common, well-known disease that is often misunderstood as bad period cramps, just like migraine is misunderstood as a bad headache. In this post, I am going to talk about a few endometriosis myths you may have heard that are simply not true.
You only get pain on your period- When you have endometriosis, period cramps are much worse than someone without the condition, and sometimes people may think you only get pain on your period, but that is so far from true. I live with constant pelvic pain that is not always severe, and most days you don’t have to medicate to manage it, but it affects every aspect of your life, not just your period. When you have endometriosis, you get more intense pain on your period, but you don’t only have pain one week out of the month, and a lot of people have constant pain. If I only had severe pain one or two days out of the month, I could live with that, but the reality is my pelvic pain does not go away. Chronic pelvic pain is not something that everyone experiences, and some people only get pain on their period, or may not have pain at all, but the belief that you only get pain on your period is simply not true because it affects you all of the time.
It only affects your period- When you have endometriosis people sometimes think that it only affects your menstrual cycles but depending on the severity and where it’s located sometimes it affects other functions of your body such as your bladder or bowel and I have known a couple of people where that has happened. My bladder and bowel function has been slower since I started experiencing pelvic pain which could be related but it also could not be related at all because when you have Spina Bifida these functions are naturally slow, and my slower bowel function could be totally normally and it’s really hard to tell. I am not overly concerned with my bladder and bowel function because it’s not unbearably painful to go to the bathroom and I am just keeping on eye on it and will let my doctor if there are any major changes in my bathroom habits. Endometriosis can be very difficult to manage, and sometimes multiple specialists have to be involved because it can progress and start attacking other parts of your body and does not only affect your menstrual cycle.
Surgery cures endometriosis– There are a lot of effective treatments that can help manage unbearable pain, and surgery can be an option for people not getting relief from medication, but it’s usually the last resort because like most surgeries, it doesn’t always give the positive outcomes we were hoping for. Surgery can be an option for some people, but it’s not a cure because endometriosis has no cure, and some people may get no relief from surgery, or it may come back, and you may need a second or third surgery. Surgery is not usually recommended as the first treatment because there are a lot of effective medications, such as birth hormonal birth control, pain medication, that can give you some relief, and surgery is not always necessary. I am not taking birth control because, with all my other health problems, I felt it was unsafe, and I am taking a different pain medication, but it is possible to manage endometriosis without surgery.
Pregnancy cures endometriosis– When you have endometriosis pain is often worse when you get your period and some people that if you get pregnant you can cure endometriosis. When you get pregnant sometimes the pain goes away because you are not getting your period but it’s usually only temporary and comes back when you start getting your period again and for some people it comes back worse. Pregnancy does not cure endometriosis, and it is common for woman with endometriosis to have fertility issues. If you want to get pregnant, please do it because you want children and not because you want to get rid of your endometriosis.
Everyone with endo experiences pain– I have chronic pelvic pain because of endometriosis but not everyone experiences pain, and some people may have no pain and only find out they have it because they tried to get pregnant and couldn’t.
Endometriosis is a full-body disease that does not only affect your menstrual cycle, and it can progress to other major organs. Period pain is something that all woman who has periods will get but when you have endometriosis it’s not your normal period pain because the pain often is so intense you can barely function which can cause severe depression and it’s important to manage pain as much as you can. It is normal to have period cramps, but you should be able to function and if you can’t it’s probably something you should talk to your doctor about because no one should have to live like that. Endometriosis is a common disease that can take years to get diagnosed because a lot of women are brushed off and not all period pain is endometriosis. What myths about endometriosis do you wish people understood? If you liked this post, please leave a comment below and share it with your friends.
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