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When I was in college, I had a roommate who had endometriosis. I hate to admit it, but I wasn’t very sympathetic to her pain. I didn’t understand how she could be fine one day, then confined to her bed the next.
Years later, I received a diagnosis of endometriosis myself.
I finally understood what it meant to have this invisible illness.
Here are the myths and facts that I wish more people understood.
“Some women just have bad periods — and it’s normal to be in pain.”
That’s something that I heard from one of the first gynecologists I spoke to about my symptoms. I had just told him that my last period had left me incapacitated, unable to stand up straight, and vomiting from the pain.
The truth is, there’s a big difference between the “normal” pain of typical period cramps and the debilitating pain of endometriosis.
And like many women, I found that my pain wasn’t taken as seriously as it should have been. We live in a world where there’s a gender bias against female pain patients.
If you’re experiencing severe pain during periods, make an appointment with your doctor. If they don’t take your symptoms seriously, consider getting another doctor’s opinion.
According to research published in the Journal of Women’s Health, it takes an average of more than 4 years for women with endometriosis to get a diagnosis after their symptoms start.
For some people, it takes even longer to get the answers they need.
This highlights the importance of listening to women when they tell us about their pain. More work is also needed to raise awareness of this condition among doctors and other community members.
Part of the reason that endometriosis takes so long to diagnose is that surgery is needed to learn for certain if it’s present.
If a doctor suspects that a patient’s symptoms might be caused by endometriosis, they may do a pelvic exam. They may also use an ultrasound or other imaging exams to create pictures of the inside of the abdomen.
Based on the results of these exams, the doctor may guess that their patient has endometriosis. But other conditions can cause similar issues — which is why surgery is needed to be sure.
To learn for certain if someone has endometriosis, a doctor needs to examine the inside of their abdomen using a type of surgery known as laparoscopy.
The need for surgery doesn’t end after laparoscopy has been used to diagnose endometriosis. Rather, many people with this condition have to go through additional operations to treat it.
A 2017 study found that among women who underwent laparoscopy, those who received a diagnosis of endometriosis were more likely than others to have additional operations.
I’ve personally had five abdominal surgeries and will likely require at least one over the next few years to treat scarring and other complications of endometriosis.
When someone is complaining about a condition that you can’t see, it might be easy to think they’re making it up.
But endometriosis is a very real disease that can seriously affect people’s health. As many as
When someone lives with endometriosis, the symptoms aren’t “all in their head.” However, the condition can affect their mental health.
If you have endometriosis and you’re experiencing anxiety or depression, you’re not alone. Dealing with chronic pain, infertility, and other symptoms can be very stressful.
Consider making an appointment with a mental health counselor. They can help you work through the effects that endometriosis might have on your emotional well-being.
If you don’t have endometriosis yourself, it might be difficult to imagine how severe the symptoms can be.
Endometriosis is a painful condition that causes lesions to develop throughout the abdominal cavity and sometimes other parts of the body.
Those lesions shed and bleed every month, with no outlet for the blood to escape. This leads to the development of scar tissue and inflammation, contributing to ever greater amounts of pain.
Some people like me develop endometriosis lesions on nerve endings and high up under the rib cage. This causes nerve pain to shoot down through my legs. It causes stabbing pain in my chest and shoulders when I breathe.
To help manage pain, I’ve been prescribed opiates since early in my treatment process — but I find it hard to think clearly while taking them.
As a single mom who runs my own business, I need to be able to function well. So I almost never take the opioid pain relievers I’ve been prescribed.
Instead, I rely on a nonsteroidal anti-inflammatory drug known as celecoxib (Celebrex) to reduce pain while on my period. I also use heat therapy, diet modifications, and other pain management strategies that I’ve picked up along the way.
None of these strategies are perfect, but I personally choose greater mental clarity over pain relief most of the time.
The thing is, I shouldn’t have to make a choice between one or the other.
Endometriosis is one of the biggest causes of female infertility. In fact, almost 40 percent of women who experience infertility have endometriosis, reports the American College of Obstetricians and Gynecologists.
But that doesn’t mean that everyone with endometriosis is unable to get pregnant. Some women with endometriosis are able to conceive, without any outside help. Others may be able to get pregnant with medical intervention.
If you have endometriosis, your doctor can help you learn how the condition might affect your ability to conceive. If you’re having trouble getting pregnant, they can help you understand your options.
I was told early on that my endometriosis diagnosis meant that I would likely have a difficult time conceiving.
When I was 26 years old, I went to see a reproductive endocrinologist. Shortly afterwards, I went through two rounds of in vitro fertilization (IVF).
I didn’t get pregnant after either round of IVF — and at that point, I decided that fertility treatments were too hard on my body, my psyche, and my bank account to continue.
But that didn’t mean I was ready to give up on the idea of being a mother.
At the age of 30, I adopted my little girl. I say that she’s the best thing to ever happen to me, and I’d go through it all a thousand times over again if it meant having her as my daughter.
A lot of people mistakenly believe that hysterectomy is a sure-fire cure for endometriosis.
Although removal of the uterus can provide relief for some people with this condition, it’s not a guaranteed cure.
After hysterectomy, symptoms of endometriosis can potentially persist or return. In cases when doctors remove the uterus but leave the ovaries, as many as
Hysterectomy isn’t a simple one-size-fits-all solution for treating endometriosis.
There’s no known cure for endometriosis, but researchers are working hard every day to develop new treatments.
One thing I’ve come to learn is that the treatments that work best for one person might not work well for everyone. For example, plenty of people with endometriosis experience relief when taking birth control pills — but I don’t.
For me, the greatest relief has come from excision surgery. In this procedure, an endometriosis specialist removed lesions from my abdomen. Making dietary changes and building up a reliable set of pain management strategies has also helped me manage the condition.
If you know someone who lives with endometriosis, learning about the condition can help you separate fact from fiction. It’s important to realize that their pain is real — even if you can’t see the cause of it yourself.
If you’ve been diagnosed with endometriosis, don’t give up on finding a treatment plan that works for you. Talk to your doctors and keep seeking answers to any questions you have.
There are more options available today to treat endometriosis than when I received my diagnosis a decade ago. I find that very promising. Maybe one day soon, experts will find a cure.
Leah Campbell is a writer and editor living in Anchorage, Alaska. She’s a single mother by choice after a serendipitous series of events led to the adoption of her daughter. Leah is also the author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah via Facebook, her website, and Twitter.