My friends know I was recently diagnosed with interstitial cystitis and endometriosis. Endometriosis can only be diagnosed via laproscopic procedure.
What is it? To put it simply, it is the growing of the uterus in places that is not supposed to grow. It is the most painful disease I have to experience yet.
What is worse if some of the things people have said to me. Here is a list of the top 5 things you never want to say to a woman with endometriosis.
1. “Oh, my friend (sister, aunt, cousin, etc) had that and she had surgery and is a okay.” I am glad for that person. However, the only cure for endometriosis is true excision surgery and that is not possible in all cases. Hysto will work if the endometriosis has only affected certain areas and the woman has no desire to have children. Laps work for a short time. Same with ablation.
2. “Oh isn’t that like a painful period?”
Girl. I wish that is all it is. I have adhesions from my gallbladder all the way down to my bladder. This causes inflammation and pain all month. Yes, it is much worse around “that time” of the month, to the point where I cannot get out of bed and I’m puking from the pain. But to assume it is simple PMS is quite frankly ignorant. Every woman is different. Some women have it with very little pain. They’re the lucky ones.
3. “Why don’t you just have a hysterectomy and adopt?” First of all, that won’t cure the endo on other organs. Second of all, it’s my God given ability to attempt to carry a child into this world when the timing is right. Lastly, would you want surgical menopause at age 30? No? Me either.
4. “I heard you can take a shot and that will stop your period so you won’t have pain”
Again, many treatment options, no cure. A lot of these treatments have horrendous side effects.
5. “Don’t you just have a lower pain tolerance than the rest of the women in the world?”
Don’t you just want to shut up and go educate yourself so you can quit sounding so stupid???
Ok number 5 was a bit drastic but this is where I’m coming from as a newly diagnosed sufferer of endometriosis. I was on birth control at age 14 for painful and heavy periods, Depo at age 18, and then went through a slew of diagnoses before we figured out what this beast is. It’s still uncertain if i have true IC and PCOS or if it’s all endometriosis.
I do plan on seeing an excision specialist within the next year but I have a personal plan first. Feel free to inquire if you are a sufferer like I am or join a group on Facebook called “Nancy’s Nook for endometriosis” these women have become a lifeline during a very confusing and scary time.