Sunday Reflections: My island life with Endometriosis

Most people do not know that March is Endometriosis Awareness month. Fewer people still know what Endometriosis is and just a handful know that I have Endometriosis and that I have been suffering from this incurable auto-immune disease for almost 20 years now.

What exactly is Endometriosis?

According to search engines Endometriosis or Endo for short  is a condition resulting from the appearance of endometrial tissue outside of the uterus and the cause of pelvic pain.

Take it from me, it is so much worse than that.  Here’s a little video:

Living with Endo is not fun. I’ve been prodded and jabbed more times than I can count, had two minor surgeries, one major and my body has been forced into menopause at least twice before my 30th.

But I’m a trooper and I deal with all of this like a boss. However, there is one thing that irks me: the stupid things people say. I know it’s an awful thing to say but I do wish people would read up on it and try to understand Endo before pretending to be experts in a field they clearly have no clue about.

Top 5 stupidest comments or advice I’ve heard thus far:

From the sympathizer
This is the friend or friend of a friend that upon hearing that you have a lot of discomfort during your period (understatement of the year) tells you about how horrible her cramps are. You have no clue and you, my friend are the reason employers all over the world roll their eyes when people like me call in sick because of “period pains”. You have one day of some cramping, I have seven (if I’m lucky) of intense, intolerable, gut wrenching pain. Sleeping can only be achieved after taking some serious heavy meds laced with codeine, sitting is painful but so is standing,  lying down and the fetal position. By day two you vaguely remember what having a meal feels like. Your stomach just can’t take anything and let’s just not talk about bathroom issues. Number one is torture. Number two? Forget about it.

From the positive period commercials
I would like to state for the record that I am not a violent person but whomever came up with that Always commercial should be shot, hanged, drowned and skinned. Who in their right mind thinks of the slogan “Have a Happy Period”? Seriously?

From Dr. No-Good
Let me start off by saying that Endometriosis is very hard to diagnose. I was my own doctor. I had to be. All the doctors I have seen when the pain just started, with the exception of a doctor in the Netherlands that first uttered the word Endometiosis to me, were complete morons. I had three gynecologists examen me at the same time after I had visited each one separately without getting any result. And all three came to the brilliant conclusion that I just needed some pain killers and work on getting pregnant. “Just take two of these twice daily and stop whining” was basically what I was told. My condition kept worsening until one day I found Dr. Boue. This woman saved my life. She believed me when I told her something was seriously wrong and she immediately scheduled my first laparoscopy to see if indeed it was endo and to see the extend of the damage. And boy, was there damage.

From Dr. Worse
But the worst advice I have ever received was to just get pregnant. “Your body will change“, they said and “your Endo will disappear after your first baby“. Biggest crock of shit I have ever heard. Excuse my language. The sad truth is that most women with stage 4 Endo (the most severe) like me, cannot conceive even if they wanted to or will need IVF to be able to get pregnant. Now in my case kids was never something I really wanted. The choice between diapers and an airline ticket to an exotic destination is not a very difficult one to make. For those who don’t get it, airline ticket beats diapers any day.  Still, when the surgeon visits your bedside after a long and very major surgery and tells you that your body will never be able to do what it was built to do, it is kind of harsh to hear and I cried the ugly cry for days. But I got over it, now if only everybody else would. In the Caribbean a man is not considered a real man until he has a few kids. The more baby mama’s the better. I am a big girl and can handle the comments and questions about our kids status but I don’t think it is fair for my husband to get attacked because of my condition. That is usually when I lose it and go all “diary of a mad black woman” on people.

From an A-hole no longer in my life:
“Maybe you should stop complaining so much and just brace up“. Yes, someone actually said this to me once when I was canceling plans yet again because of the pain I was in. I saw red and if it wasn’t for the  physical agony I was in then I probably would have committed murder. What you need to understand is the ups and downs that also go with this disease. I’m happy one moment, depressed the next, crying like a baby just 5 minutes after and I am always, always tired. It really takes a toll on your body. It is not only the physical pain but also the psychological issues that arise from dealing with Endo.

Now for some real advice. Advice from someone who is living proof that living a happy island life with Endo is not only doable but possible:

First: Read up on Endo and its symptoms. If you suspect that this incurable disease is the cause of all your pain and discomfort, tell your gyno to schedule you a laparoscopy right away. This is the only way to diagnose Endo.

Second: Once diagnosed change your diet. Take out meat, dairy, coffee and alcohol. I hear ya, where’s the fun in that, right? But it does help. You just have to stick to it. Order “Recipes for the Endometriosis Diet” by Carolyn Levett on Amazon. This will become your new bible.

Third: While taking some stuff out of your diet is a great way to start, so is adding. More greens (the darker the green the better), apple cider vinegar and beets. I take a teaspoon of apple cider mixed with water every morning and try to have beets at least once a week. I personally think beets are quit disgusting but they are extremely good for Ovarian Cysts or Chocolate Cysts caused by Endometriosis. I can feel the cyst get inflamed as soon as I have had a few alcoholic beverages or coffee but a few days on beet juice usually helps and I even had my cyst shrink from 10cm to 5 in a few weeks time, much to my doctor’s surprise. Beets are best taken in juice form, like beets and apple or beets, pineapple and ginger.

Fourth: Sports and yoga. Moving is always good for you. Laughter and physical activities create endorphins and those little suckers are our body’s natural pain killers.

Living La Vida Endo is totally doable. Remember though that what works for me might not work for you. Try to get second opinions if you are not happy with your doctor’s suggestions. Always trust your gut instinct and please do not let them talk you into removing your ovaries or uterus as a cure. The disease is incurable and has been spotted in women without a uterus or ovaries and even in women well into menopause. The lesions can grow everywhere in your body and have been found all the way in the shoulder and neck of one woman. I had lesions removed from my tubes, ovaries, bowel, bladder, uterus and spleen and still have some to go.

I have found that staying positive is the key to everything. Even Endometriosis. So hang in there, chin up and contact an Endo sister. The Endo community is very helpful. Reach out and ask questions. My door is always open so to say. Feel free to drop me an email any time. YOU ARE NOT ALONE.

Much <3, strength and positivity,

TTIG