Things I Have Not Missed

I started this blog because I felt it was important to document my endo journey, once and for all, and to be transparent for endo sisters who may come behind me in dealing with this excruciatingly painful disease. As an advocate for health and wellness, it makes me sad to think of all the women who are living with endometriosis in the world... who are misunderstood and misdiagnosed... who go through years and decades of unexplainable and intolerable pain... who aren't taken seriously and who fight tirelessly just to be heard and to find a way to live with this illness.
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I have recently been having endo-like pain again... four years after radical hysterectomy. I will use this space to share this new chapter in my endo journey, to recap the hell I have already been through and as an outlet for some of my pain and frustration.
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Today, I bring you:

Things I Have Not Missed In My 4 Year Reprieve From Endo/Pelvic Pain

1. Doctors who know very little about endo that seem to think they can fix everything for me in one office visit even though 20 years and at least that many doctors haven’t been able to do that yet. 

2. Being told that if I work on my posture, it will improve my pain. Ummm, I’m a little hunched over from having an alien stabbing me from the inside for more than two decades. 

3. People saying “bless your heart” when I share why I am in excruciating pain. 

4. Doctors who suggest pain medications that I have already tried unsuccessfully and say “we’ll try this in combination with 5 bazillion mg of Tylenol and see if that helps. Please call if it doesn’t.” Ummm...ok, but what's with the "WE"? Are you in pain, too?

4.1 When you call them back in pain and tell them it doesn’t help they say, “well that’s the best we can do at this stage.” THEN WHY... FOR THE LOVE OF ALL THAT IS HOLY, DID YOU TELL ME TO CALL???!?!!!

5. Having to go to the ER to get sufficient pain relief.

6. The doctor/hospital bills from having to go nuclear (AKA to the ER) for proper pain management. Basically, I just paid $250 for 15 Percocet. 

7. Starting over with a new doctor. How I hate having to relive my endo trauma with a new provider by telling them my entire 5000 page medical history every time I see someone new. 

8. Worrying that people think I’m some kind of drug seeker when I really just want to stop hurting so damn much!

9. Doctors pointing out other medical issues while I’m there about my endo/pelvic pain. “Wow, your BP is really high. Maybe we should talk about medication.” Are you kidding me??? It’s high because I am in excruciating pain and you don’t know how to help me! 

10. “You don’t LOOK sick. You look GREAT!” So, now I’m forced to wear pajamas and not comb my hair for a week so you believe me???