My Personal Journey with Endometriosis

Thank you Edelweiss Study for sponsoring this post. Be sure to visit the Edelweiss Endometriosis Study landing page to see if you or a loved one qualifies to participate.

Hi – My name is Crystal and I have endometriosis.

Since the age of 20, I’ve known that I have a health condition, for which there is no cure, endometriosis. There is more research needed to help women suffering in silence. There are clinical trials, such as the Edelweiss study, which can help drive progress towards more successful treatment options that can make a difference for women living with endometriosis. Today, I want to share my journey with this frustrating disease.

What is endometriosis?

Endometriosis occurs when tissue that normally lines the uterus, known as endometrium, attaches itself to other nearby organs. At some point, the tissue becomes trapped, which eventually creates scar tissue, cysts, and irritation. In advanced stages of endometriosis, organs can even stick to each other. This leads to pain, stomach problems, and even fertility issues.

Endometriosis is a very common, yet misunderstood, women’s health disease. It doesn’t matter what race you are or even how old you are – women in their reproductive years are more likely to get it. There is no medical cure for endometriosis, but there are many treatment options to greatly improve patients’ quality of life. Some ways of treating the symptoms include: birth control, painkillers, hormone therapy, and diet changes.

 

Early On –

When you have endometriosis, others don’t understand the effect it has on your daily life. Many days of my teenage years were filled with the symptoms of endometriosis. I missed school and stayed in bed all day. I couldn’t eat because the pain was relentless. Over the counter medicine did nothing to relieve what I was experiencing. Thankfully my family was sympathetic to my needs but some days were still difficult. Is this even normal? 

At first, I was told what I was experiencing was normal. However, my symptoms seemed too extreme to be normal, which was frustrating. After some time, I realized what I was experiencing really wasn’t normal. As a young adult, I began self-advocating for my own health and found a health care provider that truly listened to my issues. We tried several different treatment options to improve my quality of life, with no success.

Surgery – 

After about 3 years of trying different treatments, my doctor suspected that I had endometriosis. Surgery was needed to diagnose the condition. It can be difficult to diagnose, with symptoms that may seem like they could be caused by something else. If surgery meant I could get some relief then I was on board. On July 6, 2005, I had a laparoscopy surgery that revealed that I did indeed have endometriosis. It was actually gratifying to have a name for my condition. I wasn’t making this up and I could now properly treat it.

In addition, I was informed I should have no problems having children and I should be able to live a normal life. I was engaged to be married so I was very excited to find out that I should have no problems with conceiving children. I now realize how things could have turned out differently but every woman’s journey with endometriosis is different.

More Research Needed —

It’s been 15 years since I had surgery for endometriosis. Thankfully, my surgeon was right about my fertility. I’ve had two successful pregnancies (1 miscarriage – 2 years ago). My children are a true blessing to my husband and I. I’m truly grateful that I’ve been able to experience being a mother, without any problems. Because there is no cure, I realize that I can experience a flare-up or more invasive stage of endometriosis at any time. That doesn’t scare me or stop me.

It hurts to know that not every woman’s endometriosis journey is like mine. Millions of other women are suffering in silence. Some women are in pain. Some women are having fertility challenges. Advocate for yourself and find a doctor that will listen to your concerns. What you’re experiencing is not “normal”. There is definitely more research needed. 

Today, I’ve shared my story and I hope that other women will get the help they need to live a fulfilling life. Women who suffer from endometriosis pain are warriors. You’re not alone. Don’t suffer in silence.

My best,

 

 

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