As an endometriosis sufferer, I know how it feels when outsiders come to you with ridiculous speculations about the disease. While some may mean well (some think they can cure me), it does not make their words acceptable. Endometriosis is one of the most misunderstood illnesses, and with so many health professionals misunderstanding this disease, it’s not surprising that many without medical training do, too.
Misconceptions from others can leave sufferers feeling hurt, confused, and even angry. Here are five things I hope to never hear again:
‘Why don’t you get pregnant?’
If I had a dime for every time someone has said this to me, I would be rich. Telling someone to become pregnant is not only rude, but it’s also none of that person’s business. Many do not understand that pregnancy is not a cure for endometriosis. It is possible that pregnancy can mask the pain for a few months, but it is also possible that pregnancy can make symptoms worse. Regardless, pregnant or not, endometriosis is still there. Plus, because of my endometriosis, I might not ever be able to get pregnant. Telling me to “just get pregnant” is a stab in the heart. For me to “just get pregnant,” I risk having many miscarriages or pre-term births. Endometriosis sufferers should not feel like they have to bring another human being into this world just to find (uncertain) relief from pain.
‘Get a hysterectomy.’
Many are quick to say, “You are too young to have problems with your hormones.” If someone is too young to have problems with their hormones, then aren’t they too young for a hysterectomy? Yet many people push women to go through with a hysterectomy and give them false hope that it is a cure.
Now, for some of you reading this, a hysterectomy may have subsided or completely stopped your symptoms. Kudos to you. However, the misconception that receiving a hysterectomy is a cure needs to be addressed. I remember staring blankly at my OB-GYN when she recommended this to me as a treatment. I thought, “How can a doctor feel so confident in letting a 28-year-old remove all of her women parts?” That 28-year-old might not be able to get pregnant, but they still might want to keep any chance of fertility.
Unfortunately, thanks to lack of knowledge and false information, doctors continue to push this surgery on young women. If torn between receiving a hysterectomy or not, here is one piece of advice: Endometriosis can be found elsewhere, not just the uterus. While rare, it can be found in the lungs, heart, and brain. If your endometriosis has spread to areas outside the pelvis, a hysterectomy would be unsuccessful.
‘You had surgery … shouldn’t you be cured?’
After my laparoscopic surgery last March, people thought I was cured. Laparoscopic is not a cure. It is a procedure used to diagnose endometriosis and temporarily remove adhesions.
Done correctly, symptoms and pain can subside for months or even years. Of course, this is not the case for everyone. Someone saying they are going in for surgery to treat their endometriosis does not mean they are going to come out cured. There isn’t a cure for endometriosis.
‘Are you pregnant?’
If you have endometriosis, you know all about endo belly. Some days, my stomach becomes so bloated it looks like there truly can be twins in there. When my stomach is this bad, I automatically place my hands on my belly as if maybe I was comforting a baby. It gives me a sense of relief and maybe a bit of a fantasy, pretending it is a pregnant belly.
I was unaware of my hand placements until one afternoon while house shopping with my husband. As we were standing there, our realtor blurted out, “OK, I have to ask, are you pregnant?” As I felt my face turn beet red, all I could do was laugh, and say “No, I just have a stomachache.” What I really wanted to say was, “My fat belly is because of my endometriosis, and I actually might not ever be able to become pregnant. But thank you for reminding me!”
‘At least it’s not cancer.’
Yes, you are correct. And you better believe I am grateful for that. However, that does not mean I suffer any less. Please do not belittle my struggles.
Follow my journey at lifewithkimberli.
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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.