My Endometriosis Story

I've been meaning to write about my diagnosis of stage IV Endometriosis for a long time. After just reading some new endo info that sort of jolted me back out of denial, I thought maybe writing about it would help ease my nerves.

I remember the weekend I got my first period. My parent's were going away on a business trip together and my oldest brothers would be baby sitting me. Lucky me, at 12 years old my period picked that weekend to arrive. It didn't come peacefully either. It arrived with pain that doubled me over and made me cry out for my mother  brothers. Yeah, that wasn't too embarrassing of a weekend. If you are as old as me, you may also remember those giant 2 inch thick maxi pads that we had the privilege of wearing. My friend used to call them "mouse mattresses". That still makes me laugh.

Month after month I suffered with horrible cramps that would sometimes cause me to almost hallucinate or pass out. Seriously. The crazy thing is, I thought every girl went through that same pain each month. If the cramps arrived at night I would sit up in bed and rock myself back and forth in bed....falling asleep while sitting up. I remember often singing songs to myself while rocking. The chanting would sort of take my mind off of the horrible pain. So strange that I don't remember waking my parents up or crying out for help. I just believed it was normal period happenings. One weekend, while in high school, a group of friends were over {while my parent's were at work-at their pet shop}. I think my cramps came on suddenly that month. My friends ended up calling one of their moms to come and I was on the floor in the fetal position, rocking in pain. I think that's when I started realizing that this was not normal menstrual cramps.

The summer before college, my mom brought me to a doctor hoping to help with my extreme pms. I didn't realize at the time, but her prescription for a low dose birth control pill helped my undiagnosed endometriosis. It actually also helped my pms. Because I finally found relief , I stayed on the pill for several years....until my sister recommended that it was time to take a break from it. Guess what happened? The crazy cramping started almost immediately. By this time I was married {married at 23}and hoping to start a family. We unsuccessfully tried to conceive for a few years. Finally, we decided it was time to figure out what was wrong. After my gynecologist completed some standard IF tests I was sent on to Reproductive Endocrinologists.

That was an interesting journey {I say with eyes rolling and shaking my head}. One of the first tests I was given was called a Hysterosalpingogram. Basically, they inject dye into your uterus, and consequently it flows through your fallopian tubes {checking for blockage}. I remember being on the table and the male technician yelling at me to sit still as he injected the dye. The pain was outrageous! He would pump the dye and I would squirm and hold my breath. They thought I was being an impossible patient, but really I believe my endo was inflamed and causing issues. My mother in law drove me home that day.....I could barely walk out of the doctors office, and sat on the floor of her car crying and feverish on the way home. The doctor called in some pain medication, but didn't seem overly concerned. It's so strange to look back and see so how my pain was always disregarded. Please don't make the same mistake I had made....we need to be proactive and push for answers. By the way, my tubes were not blocked. So, I passed that dye test. Oh, yay. Sadly, nothing else was diagnosed by that experience.

I went on for more tests, but surprisingly was never sent for a laparoscopy. During this surgical procedure they go into your body with tiny cameras, investigating what's going on inside. I look back and realize this one procedure early on would have answered so many questions as they would have seen the endo. Not to mention saving us time, money, and heartache. During these years we were moving from state to state. Each state brought a new set of fertility specialists and a new set of hopes. As I shared in our adoption journey, we went through IUI's and a couple rounds of Clomid. I did not respond well at all to Clomid. It's meant to induce ovulation and have you produce more eggs. It did both of those things for me, but it also caused me a lot of pain. I now believe this had to do with the multiple eggs my body was producing, the procedure and how it mixed with my endo. Not a good combination. Again, the specialists missed the fact that I had endo. I'm guessing that it was fairly advanced by this it could have/should have been discovered. Not one doctor ever brought up the idea of Endometriosis.

I started doing some research of my own....and also had the help of my very smart sister. She suggested I look into Anti Sperm Antibodies. I won't repeat that story, as I believe I already shared the details in my adoption story. In a nutshell, I tested almost 100% positive for ASA. Again, I believe that my endometriosis is connected to the fact I have ASA. I also have Hashimotos Thyroiditis {autoimmune disease}, I believe my autoimmune issues are connected. I was born premature and would easily get sick as a child. It's hard to explain, but I think I was just born with a weaker system. I'm the literal "runt" of the family. Plus, I was born as a "pleasant surprise to my mother" as she had delivered my brother less than a year earlier.

Let's jump ahead. I stopped all infertility treatments and focused on adoption....and ultimately being a mom to adopted twin toddlers. By the time the boys were 3, my monthly pain was pretty common, and expected. No big deal. I just got used to the cramps. Actually, I can look back and remember one day {before we had the boys} where I had to call Greg to come drive me home. I had doubled over with pain, and couldn't stand. My doctor suspected that I had a ovarian cyst burst. Life went on.

I can remember the day the pain went extreme. I remember every last detail....I was wearing a dark blue denim skirt, my black t shirt, flip flops. We were taking the boys to fly kites at a nearby park. My stomach hurt a little bit, so I grabbed a yogurt as we headed out. We lasted about 10 minutes and the pain started increasing. It was the strangest pain I had ever had. My body wanted to throw up, but nothing was coming out. I would vomit pockets of whole body would convulse. I started to get a low fever, and horrible pain on my sides. I remember the boys coming and rubbing my back {they thought the yogurt got me sick}. We were considering calling the ambulance, but I begged Greg not to. If I was feeling that much pain, I wanted to be in my own house, in my own bathroom. I know that sounds crazy, but I thought the pain would go away. Greg helped me to his office floor {carpeted and next to the bathroom}. I got myself into a a pain bearing position {remember I was a pro after years of cramps} and Greg covered me with a blanket. The worst part was that I couldn't get up to throw up, so Greg would have to turn my head and place a bowl under my head. All the while, I'm feeling out of it. We were nuts. I totally wish that we had gone to the hospital because it would have sped up the whole progress for my diagnosis. Plus, the doctor told me later that my appendix was inflamed {due to the endo suffocating it}. To help, our family came and took the boys for a sleep over. I'm pretty sure that people thought I simply had a virus, and was being a big baby....I remained on the floor for the next 12 hours.

The next day Greg and I went to my primary doctor. I could barely walk, and was still in a bit of pain, but was feeling better. My doctor thought it was my gall bladder and sent me for a CAT scan. After the scan we waited....and waited....and waited in the office. We were not allowed to leave until the tech said we were finished. I found out later that this was a red flag that something was wrong.

That evening Greg and the boys went to our weekly dinner at Great Grandma's house. I stayed back home to rest. My doctor called that evening. The first thing he said was "Hi , are you alone? I need you to get a paper and write some things down for me.....and I want you to sit down.....".  Yeah, I panicked just a little. He was the nicest doctor, but I could sense the concern in his voice. He told me that I had so many growths in my abdomen that the radiologist could not see my organs. I guess this was a first for the radiologist. Certainly, it was startling news for me. I asked if he thought it was {the C word}and he said he was very concerned and that he would be contacting some doctors and that I needed to go to my gynecologist the next day. He kept talking about the many growths I had. I was freaking out! I can't remember what else he said....I was in a daze.

I stumbled to call Greg, forgetting his phone number.....and calling his cousin {who was with him}instead. I remember just sobbing alone in our house. We met with a new gyno {mine was out of town} the next day....and he quickly calmed our worry of the C word. He immediately thought it was really Endometriosis and we scheduled a laparascopic surgery to diagnose and hopefully remove some of the lesions {the growths}. I could tell you about how before the surgery,  I got down to 94 lbs, how I flew to Atlanta with Greg and the boys to be in a wedding, and wondered each day if I indeed did have the C word or Endo as my new doctor believed. But, instead of telling you all those crazy details......details that looking back I wish I had handled differently.....I will jump ahead to the laparoscopy.

My surgery showed stage IV Endo, organs glued together, lesions spread throughout. Basically, I'm a mess inside. The doctor showed Greg the photos which were  black. Because of how the endo had consumed all my organs....they weren't able to help me at all. I had 2 options....going on Lupron or returning for a full hysterectomy {and signing a form understanding that my organs could be cut in the process}. No thanks. I became completely obsessed with endometriosis and what I could do to improve my situation. I learned that there were several natural treatments I could try, including progesterone cream. With my doctor's permission I stared using topical progesterone. I've gone to a few gynecologists hoping to find some answers, but like my infertility search I keep coming away empty. I'm embarrassed to admit I have not gone to a gynecologist in 2 years {since our move}. I have seen my primary doctor....she told me that she's worried that the endometriosis will obstruct my organs. It's sort of a wait and see game, I guess. Ahhhh. So, I have spent the past few months in denial. I'm just worn out from looking for a specialist.  I stopped taking the progesterone cream a few years ago and have gotten used to all the little side effects of this endo {brain fog, exhaustion, cramps, digestive issues, etc}.

Today, I decided it was time to be proactive in my treatment so I started educating myself again. I've been loving a website written by a fellow Endo girl. I have to admit that I got myself into a little funk after reading that Endometriosis can often lead to some scary things.  I'm looking into some more natural remedies, foods to avoid/or eat, and doctors who may help. Otherwise, life as usual. I'm thankful to have a husband who totally understands this endo junk....and gets it when I say "My endo is acting up".

Though, I bet I forgot some important details, I'm glad to have finally written down some of this crazy journey.
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