My Endometriosis Story Part 2 – Diagnosis

***Disclaimer: I am not a medical expert, and I do not know everything about this disease. If you are experiencing symptoms you associate with endometriosis, please see a trusted medical professional. And if you need help finding a medical professional please, visit the Endo foundation website. I also added in some GIFs today because, why the hell not?

Today we’re going to start at the very beginning, 1999. Yes, right before Y2K, I was a thirteen-year-old girl who just so happened to start her period. Talk about a horrible year to become a woman, I mean, the world was about to end. And, also my mom decided to tell all her siblings that I was blossoming, and, can you say mortified. But, I digress. Almost as soon as my period started I began to have (now, this is a very technical term so pay attention) “killer cramps”.

When I say “killer cramps” I mean cramps so bad I couldn’t get out of bed, my legs hurt, or were so jello-like from the pain it was difficult to walk. I would get sick, have horrible bouts of diarrhea (oooh girl, this is gonna be fun), bowel pain, migraines, and nausea. By the time I was sixteen, I couldn’t handle the pain and my mom took me to the doctor to get birth control because it was supposed to help bad periods. My symptoms eased only the slightest, but my skin was clearing so… I didn’t complain too much. And from what my doctor said, it was normal to be in pain when on your period. So, I sucked it up and just dealt with it, although I would still miss school, be vomiting and on occasion pass out from the pain (usually on the toilet – glamorous I know).

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So from 16-21 I just dealt with it, took loads of Ibuprofen and Midol and tried to live my life. In August of 2008, I got married and soon after I decided to go off birth control. Now, this wasn’t the best idea for a lot of reasons (including the relationship wasn’t great and ended up disintegrating over the years but that’s another story you can read about here if you want). So, anyway, I was off birth control and very quickly the old “killer cramps” came back with vengeance, plus some new, even worse symptoms.

I developed what they call chocolate cysts on my ovaries (sounds delicious, but it’s not). I would get these cysts almost every month, and they would regularly burst, sending me to the emergency room. When I tell you this pain is unlike anything else.. I’m not exaggerating – it is excruciating and unfortunately happened usually at the most inconvenient times.

Around the same time the cysts started, my OB-GYN left her practice and I went to see a new one. I explained all my symptoms to her and was met with an insanely condescending attitude and she basically said, “You’re a woman, you get a period, it doesn’t feel good and you have to deal with it”. Luckily, I was in enough pain and also just pissed off at how she spoke to me that I didn’t accept that as an answer and went to see someone new. This next doctor decided to tell me that everything I was experiencing was “In my head”. Again, that’s gonna be a no for me dawg (I hope you read that in a Randy Jackson voice).nodawg.gif

At this point, I was desperate to find someone who would take me seriously. I couldn’t live my life anymore. I was missing classes, doing poorly in my undergrad program, calling off work, and in constant pain. I also developed Dyspareunia as well, which is a fancy way of saying it really f$%k*ng hurt to have sex. I would bleed, be in pain the entire time and (un)lucky for me was with someone who honestly didn’t really care too much about my pain. I also started experiencing random stabbing pains deep inside my vagina and rectum (I told you this was gonna be a fun ride).

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This is where I need to throw in something I feel is extremely important, and something I didn’t really truly learn until my late twenties. And that is;

WOMEN TRUST YOUR GUT WHEN SOMETHING IS WRONG – WHETHER IT IS YOUR HEALTH, YOUR JOB, OR YOUR RELATIONSHIPS. YOU KNOW WHAT IS BEST AND YOU SHOULD TRUST YOURSELF.

So, after four years, I finally found a doctor who I trusted. As soon as I told her my symptoms, she looked me in the eye and said, “That’s not normal”. She also asked what my suspicions were about my health and I told her I had been reading a lot about endometriosis and polycystic ovarian syndrome, but that endo seemed to fit my symptoms most closely. She agreed and after some investigative ultrasounds, she scheduled surgery. As I mentioned in part one, the ONLY guaranteed way to diagnose endo, is to perform an exploratory laparoscopic surgery where doctors make three small incisions in the abdomen and go in to explore and remove any endometrial growth they find and then biopsy the growths.

I was diagnosed in December 2011, at the age of 25 – 12 years after I started my period and having symptoms. After I woke up – still groggy from the anesthesia, my doctor showed me the photos of my surgery and told me I had stage three endometriosis. She also explained that I had a hard case and she could not remove a majority of the endometrial growth because it was what they call “microscopic endometriosis”. Apparently, it is undetectable, and often more painful than large growths because there is a lot more of it. In all honesty, I’m still trying to learn more about this type of endometriosis.

After I was officially diagnosed there was this weight lifted from my shoulders – and that may sound corny to you but imagine being in such immense pain and not being able to put an answer next to the question of why. It was so liberating to have the answer, even if I know I will never have a cure for this disease, the diagnosis allowed me to breathe.

An answer is the most important thing for those suffering from this horrible disease. I know that my life will never be “normal” because I will most likely always be dealing with this chronic illness, however, just knowing what the disease is, makes it possible to understand options for treatments and allows me to be a better advocate for my health in the future.

Knowing that I have endometriosis also prepares me for the future, and that is where we will go in part three of my story – Fertility. If you are struggling from endometriosis please leave a comment below telling me how you got your diagnosis, or if you are still trying to get yours. (Also, join me on MyEndometriosisTeam)

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