MY JOURNEY WITH ENDOMETRIOSIS

I always thought I’d be a mom
Sometimes I wish for a mistake
The longer that I wait, the more selfish that I get
You seem like you’d be a good dad
Now all those things are simply too complicated for my life
In all I get so faithful to my freedom
A selfish kind of life
When all I ever wanted was the simple things
A simple kind of life

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March is Endometriosis awareness month. The global virtual walk is March 25, 2023.

When Was My Simple Kind of Life Going to Start?

My journey with endometriosis, Endo to all the warriors out there, is like the word itself, freaking long. 31 years long so far. It started before I even turned 10 years old when my 1st period came. Yeah, I know. Elementary school all the way through my mid 20s were full of irregular periods, some pain, and no pregnancies.

Then, when I turned 25, I had 2 periods in 1 month. So, I went to my OBGYN with what I thought was a little fluke, which led to the experience of an uncomfortable bladder full of water for my first ultrasound, and a diagnosis of a golf ball sized cyst on one of my ovaries that needed to be removed right away. And that’s where the real journey began.

Endometriosis & Doctor(s)

My first OBGYN was amazing, I wish I realized it then. After the procedure of removing the cyst, the doctor diagnosed me with PCOS (polycystic ovarian syndrome) and stage III Endometriosis. Over the next 15 years I had seen 6 doctors, a specialist for a 2nd opinion, 5 additional doctors with insurance changes, and another new doctor later today with MediCal.

My first experiences were with really amazing doctors. However, my first 2 attempts with Kaiser … left me feeling not heard, like shit for not having a clear-cut answer whether I wanted children or not, and like I knew more about Endo than they did. When I found a Kaiser OBGYN that really heard me, there was a conflict of interest with my job.

Symptoms

By this time, the Endo symptoms had gotten significantly worse. Now diagnosed at stage IV, I had a laundry list of symptoms:

Extreme lethargy
Fatigue
Achy upper legs
Bloating
Lower back pain
Acne breakouts on my chin
Diarrhea
Gas
Sharp pains in my ovaries
Premenstrual Dysphoric Disorder (PMDD) think emotions on steroids and for me that meant raging uncontrollably, like an out of body experience
This annoyingly hard to describe pain, imagine an inflating balloon right in the middle of your stomach, fertility organs, and rectum, randomly putting pressure with force on all your organs for a few minutes each time. Meanwhile, this wave of excruciating pressure makes you feel like you’re going to pass out and throw up (right before you get that tingly feeling in your mouth) at the same time. Fun.

Most symptoms would occur together right before and during the first few days of my period, others randomly throughout the month. One symptom that didn’t affect me until recently was pain during intercourse.

via GIPHY

Treatment/Pain Management for Endo

So, what was the treatment for all of this? Well, there is no treatment, just pain management. Below are a list of the memorable treatments I’ve tried.

Pain Management
|*sucks* 1 – 10 *works* |

Side Effects
|Yes … No|

Is It A “Go To”
|👍🏼 … 👎🏼|

Several types of birth controls mostly with the word “low” in it |5…yes…👍🏼|
IB Profin 800 |6…No…👍🏼|
Depo Provera & Lupron Depot … puts your body into early menopause |6…Yes…👎🏼|
Orilissa |6…🤷🏻‍♀️…🤷🏻‍♀️|
Meloxicam |8…No…👍🏼|
Midol|7…No…👍🏼|
Fluoxetine (PMDD) |10…Yes…👍🏼|
Heating Pad |5…No…👎🏼|
Tens Machine |6…No…👎🏼|
Avoiding certain foods |8…No…👍🏼 (Great for the body … hard for the comfort food eater)|
Eating more of certain foods |8…No…👍🏼 (Great for the body … hard for the comfort food eater)|

It’s really hard to rate these without going into detail about how they affected my body verses the supporting research on them, even with the ratings. Some of the treatments that worked for me in the earlier stages, definitely do not work by themselves for me now. Make sure you don’t overdo it as well with the pain meds, I was living on Ibuprofen 800s and Midol, daily for my aches and pains during my workaholic days and it’s like reeeeeally bad for your liver. Finally, some of the medication I wasn’t able to see if it worked for me because of insurance changes. Yup, that happens too.

There’s been a lot of recent talk about inflammation being the main culprit and the foods you eat, or don’t eat, which can make your pain less or worse. For example, the foods to stay away from: Fast food/processed food, sugar, caffeine, and red meat. The 1 thing I stay away from every time, soda. Foods to eat: Kiefer, berries, spinach, avocado, and salmon.

Teas and supplements are also popular like chamomile, turmeric, and ginger. Additionally, homeopathic and eastern practices include the use of essential oils and acupuncture. There are also several types of surgeries available, with risks.

Infertility and Endometriosis

Word on the streets is that Endo doesn’t mean you can’t have a baby, but, if you don’t seek treatment, it can affect your fertility. For me, I couldn’t tell. With only 1 surgery, consistent use of birth control, and only “trying” for a baby for a few months at a time, I never got pregnant. You’d think dealing with the pain, insurance, and medications was enough, the mental health challenges of “will I be able to have a baby”, has really affected my life the most especially since I always wanted kids. The years of thoughts that go through your mind about getting pregnant, fucking sucks. Although at this point, I’ve decided against having children, I quietly still have hope.

Facts & Support

1 in 10 women are affected by Endo. There still isn’t confirmation on the cause; is it hereditary or environmental? Although my mom and a 1st cousin were also diagnosed with Endo, a lot of signs are definitely pointing to inflammation and environmental chemicals, especially dioxin. There are several “theories” when it comes to the causes of Endo as well as a library of treatment methods. Everybody’s story and journey are different. I wonder how different my life would have been without Endo.

Below I’ve included an Endo Smoothie Recipe by my diagnosing doctor.