What Not To Say To Someone With Endometriosis
Throughout my journey with endometriosis, many non-sufferers have come to me with all sorts of speculations. I would get the feeling that they were trying to cure me. Most know nothing about this illness, and if they do, they know very little. Endometriosis is, sadly, one of the most misunderstood conditions in the gynecological world. This means many medical professionals do not have proper training or knowledge on the topic.
I did begin to understand that most meant no harm by what they were saying. They were trying to help. Unfortunately, many sufferers find others comments not acceptable. These misconceptions leave us hurt and very angry.
Here are five things many endometriosis sufferers, including myself, never want to hear someone say to them.
"Hysterectomies are a cure"
Most do not realize, endometriosis has no cure. The fact that many medical professionals suggest hysterectomies as one needs to be addressed. Women should not be told this false information. Some of you reading this may have had a hysterectomy and found relief, which is great. But, it is by no means a cure. The first time my gynecologist recommended it to me, I wanted to cry. How can this be the only option for a young women?
Unfortunately, with the lack of knowledge, doctors do continue to push this surgery on those suffering. It can be a tough decision to make and for some, it is truly the only decision they have. If you are not sure which route to take, here is one piece of advice: It is possible for endometriosis to be found elsewhere. Not just on the uterus. All though considered rare, endometriosis can be seen on the lungs, the heart, and even the brain. This means a hysterectomy would not be successful, if endometriosis has spread outside the pelvis.
"At least it's not cancer"
I agree. It could be so much worse, and I hope you understand that many sufferers do feel the same way. However, that does not mean we suffer any less than someone else with another illness. We just ask you do not belittle any of our struggles.
"Why not just get pregnant?"
Telling someone to "just get pregnant" is ignorant and rude. And honestly, it's none of their business. Yes, it is possible that pregnancy can help subside pain and symptoms, but there is also a risk that pregnancy can make matters worse. Pregnant or not, endometriosis is there, lingering. For many women, getting pregnant puts them in a lot of risk: Risk for miscarriages, premature births and risks their own life. It saddens me that society thinks it's okay to bring a human being into this world just to find relief from pain. Pregnancy should not be used as a form of treatment.
"I thought you had surgery? Aren't you better now?"
No. Just because someone received surgery does not mean they are "all better". Endometriosis can grow, and can grow with vengeance again and again. Some surgeries, usually when done by specialist, do prevent many from having intense symptoms for months, or even years. Unfortunately, not every one suffering can afford surgery done by these specialist. After my surgery in 2017, many in my life were confused as to why I was still not feeling well. They would talk to me as though I was "cured" and I no longer had endometriosis.
Unfortunately, my surgery was an exploratory one, to be able to officially diagnosis me. My doctor was able to remove some adhesions that had grown, but this was only temporarily. It is important for non-sufferers to understand that just because someone says they are going into surgery, they will come out cured. Remember, endometriosis has no cure.
"Are you pregnant?"
Ouch. This statement is a stab in the heart for many sufferers. Endometriosis affects many parts of the body. This leaves some women unable to become pregnant, and leaves this topic very emotional for many.
Endo belly, which is a term I will talk about another time, occurs in many endo sufferers. Endo belly leaves many sufferers bloated, looking like they are pregnant. This is what leads others to ask that horrible question. I still remember the first time someone had asked me that very question. My face turned red and all I could blurt out was "No, I have a stomachache". What I wish I had said was, "I have endometriosis. Which is causing this fat belly right now and is actually pretty painful. And, by the way, there is a chance I may not be able to become pregnant, so thank you for that reminder". So please, if you are reading this, do not ask a women if she is pregnant!
Do you know someone that has made a difference with endometriosis advocacy?