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8/05/2008

Endometriosis Blog: My Personal History As An Endometriosis Patient

I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.

My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…

The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).

Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.

Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).

So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!

I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).

Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.

In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!

Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!

So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!

After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!

I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!

Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!

I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!

I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.

Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).

I had what I needed: contact information for an organization dedicated to endometriosis!

I went home and called The Endometriosis Association!

Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!

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So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

4 comments:

Yaya said...

It is SO SAD that as teenage girls with endometriosis we are forced to live through such pain and agony with no explanation or relief.
Thank you for sharing your personal story, I think that it will relate to many of your readers.

Jeanne said...

Alicia,

I totally agree with you about it being SO SAD that teenage girls have to cope with such challenges at an age when they are ill-prepared to know how to deal with them. I firmly believe that pediatricians should be educated about endometriosis! The vast majority of endometriosis patients I have encountered had their symptoms start at a young age (teen years or before).

I thought by sharing my story with others that maybe I could somehow help someone out there who is suffering with similar symptoms or circumstances.

The good news is that there is MUCH more information available now than years ago! The bad news is that some of the information out there is misleading or downright incorrect... and that so many doctors are still ill-equipped to treat endometriosis!!

It's amazing how much time I spend blocking ads claiming to CURRENTLY have a "cure" for endometriosis! I blocked one earlier today but it's still showing up in my Google ads. (It takes some time for the blocks to take effect).

AS WE ENDOMETRIOSIS PATIENTS ARE ALL TOO AWARE, THERE IS CURRENTLY NO CURE FOR ENDOMETRIOSIS!

When I see these ads claiming to "cure" endometriosis, it makes me so angry. Since my blog is an endometriosis one, these types of ads are magnetically attracted to my blog by the keywords and content of the site.

On a brighter note, a new ad just popped up on my Google ads: the CureTogether website!

www.curetogether.com

They DON'T claim to have a cure for endometriosis but they ARE targeting endometriosis for research to try to find one! It’s not likely to be an overnight process but their energy and passion for researching endometriosis is FANTASTIC!!

In talking with the CureTogether Co-Founder, Alexandra Carmichael, it is very evident to me that they are VERY serious and passionate about endometriosis research!

Jeanne

Mckay K said...

As you said Jeanne "very personal" but the information is begging to be shared.

Your article could have come straight out of my teenage journal. The unbearable pain that sent me to bed each month. The blood clots and heaving bleeding. It was horrible for me. And as you mentioned, there was very little understanding and even less information of the illness.

Endometriosis! At 13, I had never heard of the word. When I did at 20, I still did not understand what it meant.

Thanks for taking us back there with you and allowing us to experience what millions of young girls go through each month.

Knowledge is power!

Jeanne said...

Mckay k,

I agree that it's important for people to be able to talk about this illness as openly as any other.

I'm so sorry you had to suffer that way. If only I had known about homeopathic remedies back then, my quality of life would have been so much better! I had the same symptoms you did and many more. The level of understanding by the general public was close to zero.

I would imagine most 13 year olds have never heard of endometriosis. The only teens who may have heard of it are ones fortunate enough to be diagnosed early… or ones who have endometriosis in their family. I had never heard of it at the age of 23 when my doctor suggested a laparoscopy to look for endometriosis.

In North America, 5.5 million women and girls have endometriosis. An estimated 89 million women and girls worldwide have it. These are staggering numbers! I believe societal attitudes towards discussing this illness don't help any. That is why I speak out... for myself and for all women & girls suffering with the challenges of this serious illness.

Yes... knowledge is power!

Jeanne

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