13 Things I’ve Learned From Living With Endometriosis

October 17, 2019

For those of you who aren’t familiar with endometriosis, it’s a disorder in which tissue similar to the lining of the uterus grows outside of the uterus. The result is inflammation, which causes ridiculous amounts of pain.

Usually, endometriosis is found in the pelvic cavity, but it can attach itself to any of the reproductive organs, including the uterus, fallopian tubes, ovaries, or any of the spaces between the bladder, uterus, and vagina. Endometriosis can also affect the appendix, rectum, bowel, or intestines.

I, in addition to 200 million other individuals, have endometriosis. It took me 14 years to receive a proper diagnosis and now I write about it whenever I get the chance. Hopefully, these endometriosis-enforced life lessons will help you or someone you know get the help you (or they) need.

1. Self-advocacy is essential.

One of the most important things I’ve learned from living with endometriosis is how to be an advocate for my health.

Seven gynecologists in, I started questioning myself.

Before my official diagnosis, several doctors and so-called specialists refused to believe that I was dealing with something that wasn’t just a painful period.

Advocating for yourself isn’t optional — your life depends on it.

Did you know more than 200 million worldwide live with endometriosis? You’d think with that number we’d receive a quicker diagnosis, yet it can take 10 years or longer to get an official endometriosis diagnosis.

It took me 14 years to receive an official diagnosis.

Endometriosis is grossly under-researched. Millions of people (including doctors) have absolutely no clue what endometriosis is.

2. Endometriosis is not the growth of endometrial tissue.

Despite the number of individuals living with endometriosis, several media outlets and medical institutions continue to incorrectly define the term.

Media outlets, blogs, and medical professionals get this wrong all the time.

Endometriosis occurs when tissue, similar to the lining of the uterus, grows outside of the uterus.

This is probably why so many people think getting a hysterectomy will cure them. News flash: It won’t.

A few years ago, Lena Dunham posted an announcement on Facebook that she would be taking a break from promoting her new season for health reasons.

In the candid post she wrote, “I am currently going through a rough patch with the illness and my body (along with my amazing doctors) let me know, in no uncertain terms, that it’s time to rest.”

Despite her struggles she pointed out she felt lucky to be supported by wonderful friends, family, doctors, and her co-stars, and pointed out “so many women with this disease literally don’t have the option of time off” and she “won’t take it for granted.”

In an essay for Vogue about her decision to get a hysterectomy at age 31, she wrote, “I’ve been battling endometriosis for a decade and this will be my ninth surgical procedure, no doctor has ever confirmed this for me.”

“The pain becomes unbearable. I am delirious with it, and the doctors can’t really explain,” she added. “The ultrasound shows no cysts, no free fluid, and certainly no baby.”

Lena, herself, says a hysterectomy isn’t a miracle fix.

“I know that a hysterectomy isn’t the right choice for everyone,” she wrote.

“It’s not a guarantee that this pain will disappear, and that you are performing it due to your deeply held, essential and—to my mind—feminist belief that women should be able to make a choice about how they want to spend their childbearing years.”

The media took her personal battle and ran with it.

Almost immediately, news outlets all over the globe began publishing endometriosis-focused content.

The only problem? The information was incorrect.

3. Endometriosis is an incurable (chronic) illness.

During this time, CNN had the audacity to publish the incorrect (and dangerous) claim that a hysterectomy is the “only absolute cure” for endometriosis.

An editor removed the claim, but the fact that it was published is beyond me.

This is why self-advocacy is so important. Had I not done my research, who knows what would have happened to me.

I’m going to live with this for the rest of my life.

Sometimes, I feel nothing but anger, sadness, and defeat. Here I am post-diagnosis and I’m still in debilitating pain.

My flare-ups aren’t as frequent, but they’re still horrendous.

I can’t complain, really. Since my surgery, I’ve had tons of good days. But when I do have the occasional flare-up (which usually comes around the time of my cycle), I’m temporarily incapacitated.

4. There is hope.

As hopeless as I feel some days, there is hope (that doesn’t include downing a bottle of ibuprofen.)

Changing my diet has reduced pain.

I have Factor V Leiden, a genetic and rare blood disease that increases my chance of forming blood clots, so I’m not allowed to take hormonal birth control (commonly used as a pain management tool for endometriosis.)

Because endometriosis is an inflammatory disease, eating anti-inflammatory items is key.

I’m not going to lie, sticking to the endometriosis diet is really hard. But, I’ve found that cutting gluten, dairy, alcohol, and red meat from my diet helps with pain.

My diet consists of fibrous, iron-rich, and foods rich in essential fatty acids.

It sounds nerdy and a bit obsessive, but I keep a diary of the foods I eat and how my body reacts to each. This helps me narrow down what I can and cannot eat.

5. Resting doesn’t equal weakness.

One symptom that’s rarely talked about is chronic fatigue. But it’s real and it’s terrible.

Chronic fatigue isn’t synonymous just being tired.

It took me a long time to realize that listening to my body is the only way to get relief. Some days, it’s almost impossible to get out of bed.

Instead of fighting it, I give in and sleep.

One of the main reasons we experience chronic fatigue is because our body is trying to eliminate diseased tissue. This tissue is constantly secreting cytokines–AKA inflammatory toxins.

The body is literally fighting itself.

Once I discovered the reason why I was perpetually exhausted, it was easier for me to turn everything off and just go to sleep.

6. Insomnia sucks.

What’s worse than chronic fatigue? Feeling completely exhausted and not being able to go to sleep.

Sometimes, I can’t sleep because I’m in pain. Other times, I just can’t sleep period.

When I’m flaring, it’s almost impossible to go to sleep thanks to the radiating pain in my left thigh/leg. (Courtesy of my left ovary.)

Research shows a link between endometriosis and insomnia.

“Women with endometriosis often feel exhausted, even in days where they do not experience intense pain,” endometriosis study leader Professor Brigitte Leeners tells EndoFound.org.

But, doctors are still unsure of the cause.

“Their fatigue may be of varying intensity, and they are unable to predict when it will be intense so that it is often difficult to adjust professional and leisure time activities.”

7. Laparoscopy is the ‘Gold Standard’ for diagnosing endometriosis.

A quick-and-easy trans-vaginal ultrasound won’t cut it. The only way to officially diagnose endometriosis is via a diagnostic laparoscopy with a pathology confirmation of biopsy specimens.

Deep-excision surgery is the only way to completely remove the lesion in its entirety.

During the time of my lap, I underwent several different procedures including a diagnostic laparoscopy, a hysteroscopy (dilation and curettage, also known as D&C), a cystoscopy, a chromotubation, IUD removal, and hydro-distention of the bladder.

The catch? Endometriosis can come back after surgery.

According to the Cleveland Clinic, 20 to 40 percent of women who undergo conservative surgery will have reoccurring symptoms within five years.

It’s a never-ending thing.

Sadly, endometriosis is a never-ending condition. (Hence the word “chronic.”) It’s almost impossible to remove every cell of misplaced tissue.

8. Recovery is no joke — take it seriously.

I don’t know why, but I thought I’d be able to hop up from surgery in one week and go back to work.

This was one of the stupidest decisions I’ve ever made, ever.

Not to freak you out, but recovery after laparoscopy is terrible. My stomach was the size of a watermelon, I was urinating blood, I could barely stand up, and the list goes on and on.

I was enraged.

All I could think was, I had surgery to make this better, why am I still in pain? The answer to that question is simple: recovery takes time.

Pushing yourself will only make things worse (way worse).

I tried going back to work too soon and the quality of my output was crap.

9. Sex is terrible.

The funny thing (OK not-so-funny thing) is getting intimate didn’t hurt that much until after I had surgery. I mean, it hurt, but not like it does now.

The good news? There are ways to make it better.

I’ve found different positions, lots of lube, and certain toys make getting physical less painful.

The Ohnut is the best sex toy I’ve ever had.

I can’t stop talking about the Ohnut. It’s a little device that gives users the power to change the depth of penetration.

It’s the first intimate wearable of its kind and I recommend it 100 percent.

The Ohnut has changed my life for the better. Instead of worrying about which position will work for me, I can relax and just have sex like a normal woman.

10. Support is non-negotiable.

Having a solid support group is extremely important. During the hardest year of my life, I had family members, friends, and even professors accuse me of overreacting and drug abuse.

Many people questioned my mental health.

The truth is, I was going crazy. But not because I was actually insane. I was going crazy because no one would listen to me. I kept getting eye-rolls and sighs of disappointment. Even my best friend stopped talking to me for a few weeks.

Staying strong is difficult when you’re alone.

During my final semester of graduate school, I was constantly going in-and-out of the hospital. No one knew what was wrong with me.

I told several doctors “I think I have endometriosis,” but no one would listen.

I literally said out loud “I think I have endometriosis,” and no one (I mean, no one) would listen. It wasn’t until I started urinating blood that I found a doctor who actually knew what he was doing.

11. Interstitial Cystitis (IC) is known as “Endometriosis’ Evil Twin.”

I had no idea what interstitial cystitis was until I met Dr. Lemer (the only doctor who believed me).

It felt so good to finally feel heard.

When I met Dr. Lemer, I was ready to give up. On doctor’s visits, on life, on everything.

Apparently my endometriosis had something to do with my IC.

IC is often referred to as endometriosis’ “evil twin.” But guess what? No one knows why and no one knows its cause. After diagnosing me with IC, Dr. Lemer urged me to see an endometriosis specialist.

What is interstitial cystitis?

In my experience, IC also known as Bladder Pain Syndrome is literal Hell. The actual definition though defines IC as “bladder pain syndrome is the feeling of pain and pressure in the bladder area.”

This definition is underwhelming.

IC is when your urethra is on fire. It can cause severe “discomfort” (PAIN), blood in the urine, and painful intercourse.

12. Those new “treatment” options will only make things worse.

Despite the media’s clear excitement over Lupron and Orilissa, these drugs are dangerous and expensive.

According to the FDA, Lupron users have filed nearly 24,000 reports of adverse reactions.

Orilissa is the pill version of Lupron, which is a drug that was originally approved for prostate cancer.

Several women have come forward to out the debilitating side effects of both Lupron and Orilissa.

“Lupron does not make endometriosis go away so the cure rate with Lupron is zero,” endometriosis expert Dr. David Redwine tells 13.

It’s a bandaid that throws your body into menopause.

“So if you take the rate of essentially 100 percent side effects and compare that with a zero-percent cure rate, I think it’s clear that the risks and side effects far outweigh the benefits.”

13. Living with endometriosis made me the person I am today.

Endometriosis is one of the best and the worst things to happen to me. I’ve lost jobs, friends, and a lot of time during my search for a proper diagnosis.

It’s taken so much from me, but it’s given me a lot, too.

But, I’ve also gained new friends, a new perspective on life, and a new passion.

In 2017, I decided to take my pain and turn it into passion.

Instead of fueling the negative thoughts with even more negativity about my body, my health, my social life, etc. I created a space for positivity by launching the first endometriosis magazine in America.

I’m using my chronic illness as a way to help and educate others on love, health, nutrition, fashion, and provide endometriosis support.

What is endometriosis support?

It’s all about setting boundaries when it comes to your mental, physical, and emotional health.

On Do You Endo, you can find articles, like, “How Setting Boundaries Helps Me Navigate Infertility Hell,” which advises you to learn the power of just saying no.

If you’ve ever felt guilty turning down a baby shower or cancelling plans because you feel so drained, take Angelica Young’s advice:

“Saying ‘No’ doesn’t mean you don’t care about someone or whatever social event they’re hosting or inviting you to. Saying “No” means that you’re taking a moment to work on yourself. There’s nothing wrong with that. If endometriosis has taught me anything, it’s that I have to say no to things,” she explains.

While the site has formed a strong community for writers to share their struggles, if you just need a laugh, we’ve got you covered.

Check out “Endometriosis Memes for Endo-Vidiuals With a Sense of Humor,” for some lighthearted “you know you have Endo when” jokes…because the best medicine is truly laughter.

For example: “You know you have Endo when you’d literally marry your heating pad. If, that were legal.”

Naturally, “You know you have Endo when… you take so many pills/supplements that it’s like swallowing a bag of Trail Mix whole.”

Or: “You know you have Endo when… you have a secret stash of tampons, pads, and menstrual cups hidden in every cabinet, drawer, and bag that you own.”

Sometimes you just need to bask in the joy that other people don’t own a single pair of white pants, another woman’s legs have fallen asleep on the toilet, and an Endo diagnosis basically means you support the heating pad industry.