I was diagnosed with endometriosis in September 2013, during an emergency surgery to remove a cyst on my left ovary.  I was 29 years old.  My surgeon did not do anything to treat or remove my endometriosis, only took pictures of it and told me that I had it.  My story is unusual in the fact that, prior to this surgery, I had no symptoms that I correlated with endometriosis.  The surgery appeared to awaken the endometriosis inside of me, because shortly after I began having symptoms with my cycle, and then just a few short months after that I began having symptoms all month long.

When I began writing this blog post, I started with a detailed description of every ridiculous doctor’s appointment I’ve had since my diagnosis.  But it sounded so cold and clinical and not something that people would relate to.

And I want people to relate to my story, because I desperately want others to help raise awareness about endometriosis.  To stop the stigma, and the delay in diagnosis that most women face, and the failed ineffective treatments.

So, I decided that maybe I should tell you what my life is like with endometriosis.  Prior to my diagnosis, I did whatever I wanted.  I lived on an acreage with my husband and our 3 dogs.  I worked out regularly.  We went to parties with friends.  We travelled.  We had a huge garden and I canned and froze vegetables every single year.  We had lots of hobbies – a motorcycle, convertible, boat, camper, race cars, snowmobiles, etc.  We seemed to be constantly doing construction work on our house.  We loved life and we were always busy.  Our life was FULL of fun!  Over the last 5 years, that life has slowly changed into something far less fun.

Life seems to constantly be on hold or up-in-the-air depending on how I am feeling at any given moment.  We don’t make a lot of plans, and when we do, we have to adjust so that I have enough time to rest and recuperate.  We have to cancel plans last minute because I can’t leave the couch and my beloved heating pad.  We’ve reevaluated everything in our lives and tried to cut out as much stress as possible.  Our whole lives seem controlled by endometriosis and its symptoms.  It is not even remotely fun.

-Life is full of questions now-

Will wearing jeans hurt my abdomen today or should I just stick with my leggings?

Do I feel a flare up coming?

Why am I so bloated?

Am I actually tired or am I just fatigued?

Is that another new symptom?

Will doing this make it hard for me to function tomorrow?

Will doing this cause a flare up?

What kind of side effects will this medicine cause?

Will this medicine work?

When is the pain going to start again?

When will it end?

What is wrong with my body?

Life has not been all that fun for the last 5 years, but I’ve also been advocating for myself and trying to move forward with effective treatment options.  I’ve heard all sorts of misinformation and been treated poorly by many medical professionals.  I’ve been dismissed, laughed at, lied to.  I’ve noticed the huge gender bias in the medical field, the propensity to not take women’s pain seriously.  The looks to my husband to validate what I’m saying.  The disbelief that it’s really that bad.

Gender bias in the medical field is one of the main reasons that I’m so passionate about educating people on this disease.  Without gender bias, many women would not have to suffer through years and even decades of delayed treatment.  A study by the University of Maryland Francis King Carey School of Law in the early 2000’s found that female patients are more likely to have their pain described as emotional or psychogenic.

A 2011 Institute of Medicine report found that not only do women seem to suffer more often from pain, but they also have a higher pain tolerance.  Nevertheless, the study concluded that women’s reports of pain were more likely to be dismissed.  And then this study, “The Girl Who Cried Pain,” showed that women are more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients’.

Pain is complex, hard to treat and there aren’t a lot of good answers for medical professionals on how to best manage people in chronic pain.  Still, women seem to face more skepticism or indifference when it comes to their symptoms.  Whether it is an implicit or unintentional bias, doesn’t negate the fact that 90% of women with chronic pain feel the health care system discriminates against women.

Through my own experiences, I can relate to this gender bias as well, and so can my husband.  It didn’t take him long to notice how they seemed to give his testimony of my symptoms more weight than my own.  For him to notice how they would look at him to validate what I was saying.  He was perplexed.  Yes, of course, he saw when I was in pain and knew how often that was or what I was doing to manage it.  But he didn’t know what it felt like…how could he?!
Advocating for your own health can be empowering.  It can give you the confidence to walk away from those bad apples and continue looking for the good ones.  And I’m really lucky to have found a good one.

I’ll be having my first endometriosis surgery on April 25th with excision specialist Dr. Heegaard at OB-GYN West.  We will also be removing my uterus, cervix and fallopian tubes.  And while it wasn’t the result I wanted at the beginning, 5 years of pain and suffering can change your perspective.  I’m now elated to have a plan, a light at the end of the tunnel and a Dr. who believes me and is competent and skilled enough to truly help me.

Endometriosis can be a lonely disease.  One full of challenges that you must learn to navigate.  But it doesn’t have to be like this.  With increased awareness of the symptoms of the disease and better training for medical professionals on the appropriate treatments, we can overcome these issues and provide better care for future generations.  I hope you will join all of the Endometriosis Warriors this month to help us spread awareness and education!

— The Minnesota Endo Warriors are honored to help Kristi share her story and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones. Kristi is proud to partner with the Minnesota Endo Warriors. If you would like to connect with Kristi and continue to follow her story you can through her Facebook and Instagram accounts.

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