The truth about endo

If you have been around for a while you know that I have endometriosis. I have suffered for endometriosis for most of my life. Recently I made a video about it on my YouTube channel.

The video was a collaboration with Audra at Home.  I recently found her channel because two YouTubers I follow, Ti Nappyheadedjojoba and Alicia Kinkysweat recommended her channel.  Audra’s channel explores beauty, horror and life.  I especially enjoy her live streams.  The streams veer off topic and can be raunchy at times but deep and meaningful conversations happen during them as well.  

Even though we did not discus what we would put in our videos, our videos were surprisingly similar. We had very similar experiences.

Audra’s Video

So what exactly is endometriosis?

 According to the Endometriosis Foundation of America, Endometriosis occurs when tissue similar to the lining of the uterus, or endometrium, is found outside of the womb, where the tissue should not be. The result is inflammation, as the tissue responds to the monthly fluctuations of a woman’s menstrual cycle. The disease affects an estimated 200 million women worldwide, and many women often experience a decade-long delay in diagnosis. Currently, there is no known cause of endometriosis, and there is no cure.

My Video

My endometriosis journey starts on a sunday afternoon in the “fall” of 1997 when I was 13 years old.  I was outside taking in the laundry when I felt a sudden pain in my lower right belly.  The pain was nothing like I had ever felt before. It was sharp then dull.  There was a warm burning sensation and feeling of fullness and pressure inside my belly. I remember it so clearly all these years later.

I called out for my mother. We were both confused.  She thought maybe I was getting my period.  AT the time I had been menstruating for 2 years.  I checked but there was no blood.  So She put me to bed with some tea. In the morning I wasn’t any better so she took me to the doctor.  After an ultrasound showed that I did not have appendicitis he asked my mom if I was faking to get out of school.  That was the first time I was accused of faking.

When I was around 15, the pain on the lower right side of my body was basically constant. I could feel it everyday.  Sometimes it would shoot down my leg or up my back.  So my aunt took me to see her OBGYB who had diagnosed her endometriosis laparoscopically and was trying to treat it. She diagnosed me with scoliosis and wanted to see if the curve in my spine was causing my pain. When the results of the xrays came in she wanted me to see a bone doctor. 

When I asked my father for the money to see the bone doctor accused me of and my mom of conspiring with the doctors to waste his money.  His exact words were “Ou ek maman’ou ka fere complo ek doctere ah pou mange lahja mwen”.  It was one of the most hurtful things I have ever experienced. It was the second time I was accused of faking.

I decided to live with my pain and stopped asking for help.  I would just drink lots of turmeric and cinnamon tea, take pain killers and suffer in silence.  This might be why I get upset when people tell me I NEED to take herbs for my conditions but that’s another story for another time. 

Fast forward to May of 2006.  It was graduation week at the Coast Guard Academy.  I had been on birth control for one month because my cramps had gotten so bad that I had to go for shots of toradol every month.  That morning my roommate found me on the floor of my closet trying AND FAILING to button my shirt.  I was in so much pain I was delirious. I wouldn’t let her help me. Then my bestie was there and somehow they convinced me to let them dress me.  I refused to wear sweats.  Only uniform of the day for me.  I also  convinced them that I could go to the clinic by myself.  I am stubborn and difficult when I am in pain. When I got to the clinic my doctor was pissed.

How were my cramps worse than ever? How could I already have my period? I was just here the other day with cramps.  You don’t need to be a genius to guess what was coming next.  She said I was faking to get out of drill practice for graduation.  I pointed to my vagina [point]  and said you can check.  She checked my chart and realized that my period was indeed a month ago and only then did I get treatment.  

It was the second time a doctor accused me of faking.

We won’t even talk about all the times I was accused of being pregnant because I was throwing up for no apparent reason.  One doctor sent a MALE nurse to ask “when was the last time you engaged in sexual activity.  When I said never, he said “the doctor wanted to know how you knew you were not pregnant.” I was diagnosed with IBS and lactose intolerance.  At one point in time they even thought I had gallstones.  I still struggle with digestive issues today.

In February of 2009, After a gruelling digestive upset where it didn’t seem like I would stop vomiting, I was referred to a GYN; but first they had to do a pregnancy test.  Just in case I was lying about my sex life.  That’s when I met Dr Glazerman.  He didn’t accuse me of being pregnant or faking but the ultrasound place surely needed a pregnancy test. The one from the week before just would not do.  A week later I was headed into surgery for my first laparoscopy.  The nurses needed a fresh pregnancy test but I just couldn’t pee because I had done a bowel prep the day before. Dr Glazerman said it was okay.  Imagine that! A Doctor, a male doctor believing me.

When I had a follow up with him he said “you have endometriosis.  I took out what I could see.  If you still have pain do not let anyone who isn’t an endometriosis specialist touch you.” That man changed my life. He also gave me the quickest and only pain free pap smear I ever had. Yes I have cried during exams but that’s another story for another time.

I bought lots of books and did research online.  I stopped eating wheat dairy, soy and sugar. When my pain got worse in 2010 I went to see Dr Seckin.  The pain was so bad that I couldn’t wear regular shoes it would hurt to walk.  I had to wear my fancy running shoes everywhere even to work.  You should see me with my cutest little outfit and Asics gel cumulus. 

During my first exam with Dr Seckin he said “there is definitely something there.”  Imagine that? A doctor that believes my pain.  I used all of my money and some of my friends’ money to pay for the second surgery. (This was 2010 before crowdfunding was a thing –for the young folks). I was going to pay them back but a few months later I lost my job in NY and had to move back home to St Lucia but again another story for another day.

As I healed from surgery my pain became less and less.  Many of my digestive issues resolved.  I still don’t eat wheat, dairy, soy etc.  I’m actually allergic.  Many people with endometriosis have food intolerances and allergies. I was able to have a relatively normal life and at one point I was running 8 miles on my long run days.  I miss those days.

Since then I have developed fibromyalgia and asthma.  Many people with endometriosis develop fibromyalgia or some autoimmune disease. The pain is coming back and I am scared.  I have so much going on with my health.  Most days I can barely make it out of bed.  This pandemic amplifies all that fear but the truth is I am working through it.  

The truth about endometriosis is that it is not only hard physically but also emotionally.

The truth about endometriosis is that it makes you feel tired and drained.  It leaves you with so little energy for the things you want and NEED to do.  I remember in NY when I had to cancel plans ALL THE TIME.  One especially difficult time I woke up vomiting on the day I had to go to Philly where all my college friends were meeting up for the weekend.

The truth about endo is people will not believe you. Your family will not believe you. Doctors will not believe you.

Keep trying to find help because killer cramps are not normal.  I used to think it was normal to be in so much pain during your period that you were throwing up and had to miss 2 days of school.  I know better now.  I know that killer cramps are not normal. 

I want you to know that killer cramps are not normal. You ddon;t have to suffer in silence like I did for so many years.  There are many people out there going through the same thing as you.  People like Audra and I who are willing to share our stories.

I have included links to resources in my description box of the video.  Please use them if you need them.  There are many more doctors specializing in endometriosis now.  Back in 2009  there were really only 3 in the whole US.  You don’t have to suffer with pain for 12 years before you get  diagnosed like I did.

The truth about endo is you don’t have to suffer alone.  Killer cramps are not normal.  Find a doctor who believes you and take it forom there.  Use the links in the description box to learn more about resources available to you.  

I hope you will check out the video and that it will be informational and helpful.