My Story, etc.

For those who may care.

     My name is Olivia. This blog is born of my frustration with the condition of women's health care and care for those with chronic pain. I am currently 21 years old and have suffered from chronic pain, specifically a disease called endometriosis, for years. The cause of my frustration began more than two years ago when I stumbled on to this phenomenon.

Endometriosis : the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility. (Merriam-Webster)

     I will delve more into endometriosis (or endo as I familiarly call it) after I give you some back story. Puberty (sorry, didn't say this would be fun, just hopefully educational) was not easy for me. I had no idea what a period actually was until the day I ran into my mother's room screaming that I was bleeding. This was not all her fault, as I was a very shy, very scared, easily offended little lady. Nonetheless, I was frightened. After my fears were assuaged, all was fine. For a time. Not long after my first turn with my menses, I started to get a bit worried again. 

     With every cycle that passed, my "time of the month" grew more and more painful. Not many years later, I was popping ibuprofen like a junkie and having to replace my "ladies napkins" all to often. Even sooner after that, I was lying on my bathroom floor for hours at a time afraid I would not be able to hold down my meal from the sheer pain. I was loosing blood at alarming rates and it felt as though my cycle had inverted itself to spend more time on the horrid, bloody side rather than the happy, cramp free, and kind side. (This pain was worrisome because I have suffered from back pain and migraines for most of my life and have an abnormally high pain tolerance.) I was going to a gynecologist at the time. I wanted birth control like most young women do, to "ease the menstrual symptoms" and other reasons that none of us want to admit to our mothers.

     I kept telling my doctor that the pain was becoming insufferable, that my anemia was the worst it had ever been in my life. He prescribed the the hormonal ring NuvaRing that he told me would help regulate my period, but I still didn't feel as if I could even leave the house when my time inevitably came every month. It was unpredictable as well. (Squeamish beware: just skip to the next paragraph.) My menstrual  discharge had started changing. One day it would be red as a tomato, the next it would be dark and extremely clotted (which was very painful). It would be so heavy I would leak through a tampon, pad, underwear, and pants in minutes at times. It would seem to be gone for a time and then return with a vengeance.

     My doctor kept telling me to manage the pain, that the bleeding was just a phase, it could have been a change in hormones, a harmless interaction with my depression medications, any number of things. So he had me convinced for a while that I was just hormonal and over-sensitive. 

     In the midst of all this, I met a kind young mother (for purposes of maintaining her anonymity we'll call her Clarissa) who lived two doors down from me. I still love and adore her now, although I don't spend as much time with her as I did then. She has Multiple Sclerosis, and she is one of the strongest, happiest, kindest, smartest women I know. I was finishing high school online and had very few friends, so I had a lot of free time to spend with her and her little girl.  I'm glad I did; She taught me too many things to count (about babies, boys, baking, being confident in your own body, etc.). One day we had a conversation that changed my life.

     As I was talking with her and playing with her daughter (we'll call her Annabelle,) I brought up some of my menstrual discomfort (I had become very comfortable speaking of such things with Clarissa). So I went into great detail, even of my painful and traumatizing experiences with sex. She promptly told me of some of her own experiences.

     For years, she (in addition to her MS) had been suffering from a condition called endometriosis. She said my symptoms were exactly like hers and that I needed to make an appointment with my doctor to see if that was where all my issues were coming from. I heeded her advice immediately. But… Before I made it into the office, I decided to do some research on my own.

     What I found online frightened me. I kept seeing words like "infertility," "hysterectomy," "lesions," "cancer," and "incurable." While some of those words are applicable in a discussion about endo, these are mostly worse case scenario type words. Not knowing this at the time, I went into my doctor's office afraid. I now know I was looking in all the wrong places, because there are so few reliable resources for endo in general. Just my luck, I had managed to find some of the misinformed ones.

     When I mentioned my worries to my doctor, he indicated that it was highly unlikely. I was confused. He told me that endometriosis is very rare, especially in someone so young (I was eighteen at the time. I have since found out it is not as rare as most believe it to be.) I still questioned him and he began to consider it. He gave me a full exam with ultrasound and said I looked completely healthy, aside from a tilted uterus and slightly swollen ovaries (which can be painful, but only to a certain degree). He didn't see any reason for me to be having so much pain and bleeding. After more discussion he agreed that endometriosis was a possibility but left the option of finding out to me and my mother. The only way to actually diagnose endo is through a surgery called laparoscopy. This involves small incisions being made into the lower abdomen, one right at the belly button, and one or more elsewhere nearby. 

     Carbon dioxide gas is pumped into the abdomen to safely make room for the laparoscope to move freely.  The doctor will make another small incision through which to insert a tool to help move and lift the organs so the laparoscope can get as good a view as possible. If any endometrial tissue is found, the doctor will use a laser to burn it's surface to prevent it from growing further. This technique is called ablation. A sample of the tissue is usually taken as well to determine that it is indeed endometriosis and not something else for which it could have been mistaken.

     After all located lesions have been ablated, the tools are removed, and they allow most of the gas to evacuate the abdomen and they stitch you up. My incisions were sealed and covered with a sticky plaster-like substance that would dissolve over time. The process is sometimes filmed, and snapshots are often taken of the endometrial tissues. Looking at the photos post-op, it can seem crazy that something so small can cause so much pain. My recovery lasted a little over a week but I had a handful of other issues on my plate.

     My procedure was performed more than two years ago.

     Today, I'm afraid to say I'm not much better, but I'm doing my research and trying to stay on top of it. Most days are good! However, some days I don't leave the bed except to relieve myself (and only with help.) I have started this blog to help myself keep track of my own experience and maybe help a few other women out there who are struggling. With so little information, it can be very overwhelming trying to figure out your best options. I have hope that with awareness, clear information, and early detection, we can get to a place where endometriosis is a very manageable disease. 

     If you have made it this far, thank you for reading. If you have any further questions you would like to ask me, feel free. I always enjoy talking to others. Email me: notwhatmydoctortoldme@gmail.com

     Also, there are a few good resources out there that I would like to recommend if you or someone you know may be suffering from endometriosis. Don't ignore the pain. Take control.

The Endometriosis Association  

What is it? What are the symptoms?

Treatment Options