Today I am going to tell you what it is like to be 1 in 10. I have endometriosis, which is a leading cause of infertility. It took me close to 20 years to be properly diagnosed.
Sharing my story.
I have started to type this post more times than I care to count. There have been at least 20 drafts that I scrapped over the past year. My goal was to have it ready by the one year anniversary of diagnosis (July 11, 2018). Why have I discarded so many attempts? It’s funny and ironic: people meet me and tell me that they feel like they have known me for a long time because I am so open. I may be open about some things, but some topics, particularly my health, are such that I don’t divulge information easily. Even this story will barely scratch the surface. This is very personal and I feel quite vulnerable in putting this out publicly. If my posting my own very personal story helps one person in a similar situation it will be worth it.
Where to begin?
I once overheard a woman state “growing up I thought getting pregnant was much easier than this.” I remember thinking at that time, “Boy are you right!” Sex ed classes in school made it sound as common as sneezing. (To be clear I am not intending as a slight against anyone who has unexpectedly found themselves pregnant; this is only speaking for my own personal story.)
Well-intentioned questions.
I got married at the age of 21, thinking that a child would follow in a few years. By the age of 24 I had stopped taking birth control, hoping that nature could run its course. The next year a person I had known since before kindergarten got in touch with me via Myspace (remember that platform?) . We did the usual catching up and then she hit me with the question that I hated answering with all my being. She asked “Why don’t you have kids yet?” Thousands of miles away from her innocent question I sat with tears stinging my eyes as I stared at the monitor. How can I answer this question without prompting a pity response? I did not want her pity. I did not want to discuss it. What I wanted is the question to never be asked again. I cannot remember my response, but I’m sure it was sarcastic and flippant since that’s my usual way to deflect something that’s uncomfortable.
Young married life.
As the years sped on these questions continued to assault me. A family friend from the church I had grown up in stopped me at the small town pharmacy while I was picking up medications for my grandmother. The woman was not known for volume control and she loudly asked “When are you going to hurry up and make your mother a grandmother? She is old enough, you know”. I was completely caught off guard, but my ever sarcastic shield went up and I spouted back the first thing I could think of: “When I can be in a room with kids and not want to kill them.” The pharmacist dropped the prescription he was filling and quickly hid his face but I could hear him laughing. Do I really want to kill little kids? Of course not. Did I want to answer the question? ABSOLUTELY NOT.
Endometriosis affects an estimated 1 in 10 women during their reproductive years
http://endometriosis.org
By my 5th year of marriage I had devised a retort when people asked me questions: “When a person has been married 5 years and they have no children, they do not want to discuss it because one of two things are going on. Either A) they have decided that they do not want to have children, or, B) they want children and something is wrong. Either way, it is not a topic for discussion outside of the closest people in their life or their doctor.”
Celebrations you choose to avoid.
As time wore on, I found myself resenting baby shower invitations. What most people didn’t know is that all these years I had been purchasing baby shower thank-you notes and other baby items I loved and hoped to use. Going to a baby shower was just a reminder of what would never happen. Shortly after my divorce I decided that I should avoid baby showers. The amount of crying in the shower afterward was just too painful.
Speaking of pain.
1 in 10 women of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.
The Guardian
As the years ticked on, the pain that comes with endometriosis intensified. I was popping Aleve like it was candy. Several days a month it was all I could do to not curl up in a ball. I would even wake up sobbing uncontrollably from pain. It got so bad that I could not participate in my running schedule like I wanted. Training for a distance race was out because at least twice a month I would either have to miss my long run or leave early because of pain. I’m not one to show weakness easily. I would show up and gut my way out until I could go home and collapse onto a heating pad and try to not curl into a fetal position. This had been going on for YEARS without me telling anyone, and I had assumed this was normal.
I was going for my annual examinations. Not once was the word endometriosis used during any doctor visit.
Searching for answers.
In 2016, the pain became so bad I went to see the doctor. I was examined and an ultrasound was done. I was told that they found a cyst. The cyst was small and not worth worrying about, and that I was fine. Another year passed like this. Finally I was pushed to visit a different specialist. She asked about my symptoms, and after I gave her a very detailed list she responded with these words: “I haven’t even examined you yet and I can tell you need a hysterectomy yesterday.” I was shocked and asked for options. I still wanted a child, but I was told that because my endometriosis was so advanced this would never be possible. That any half measure would only have me back in a few years time facing the same choices.
This was the first time any doctor had even said “endometriosis” to me. The diagnosis came as a complete shock to me even though I had been googling “signs you need a hysterectomy” in the middle of the night when the pain became too bad. The 15 hours that came after I fell apart. This was something I had never planned for in my life. All I could think about were all the dolls I had been given and all the things I had planned on doing when I became a mom. I clearly remembered the superior tone in a family member’s voice when they said “Sometimes God just knows who should not be a mother.” That sentence still haunts me.
The plan.
In a matter of days I was scheduled for an emergency radical hysterectomy.
I called my person (you will understand if you watch Grey’s Anatomy), she made plans to come stay with us for the surgery and the first few days of recovery. On the day of the surgery we all made the pilgrimage to the hospital together. When I awoke the doctor filled me in on how the surgery had gone. (This is where the semi gory and gross part comes in). According to my doctor, things were “pretty grown together and dug in”. She advised that recovery was going to be pretty uncomfortable.
I have always had a fear of morphine. My biological father developed an addiction to it when he was in a horrible car accident. My fear is that I could easily follow that path. After surgery, I refused the morphine, opting for non-narcotic pain relievers. The nurses told me I had taken all the non-narcotic pain relievers that they could administer. I tried to hold out but the pain was above my threshold. I did take narcotic pain relievers for a short time. My hospital stay was longer than planned for this reason.
One year out.
I am now nearly 1 year post surgery. I want to tell you that the fatigue that came along with this surgery and the recovery process I went through is real. Before I went through this I had no idea just how tired a person could feel. Sometimes I decide to do something I get to work, and then I just run smack into a brick wall. Sometimes the fatigue is so bad that I can’t push through. I am still experiencing occasional full-body fatigue that I still have not figured out how to get over.
One side effect is weight gain because I haven’t regained my stamina and I am not happy with this. I am making plans. While the full-body fatigue is always looming, one good thing is that I have not once woken up in the middle of the night with sharp, stabbing pain. I have not had to fight the tears while sitting at my desk as wave after wave of pain washed over me. So now I am looking at the future and redefining what my life will look like 10 and 30 years down the road. It’s a strange feeling, but at the same time it is so nice to stop taking shallow breaths to dull the pain.
Why would I tell you this?
Like I said, normally I am pretty private about this kind of thing. I share my story for a few important reasons. The first reason is the length of time it took me to get a diagnosis, which is insane! It’s especially crazy when a major surgery is most often the eventual normal outcome for cases like these. In the meantime, we are diagnosed with IBS, stress, moodiness and even prescribed birth control to help with the symptoms. It can honestly leave you feeling slightly crazy and like your body is waging war against you.
My second reason is to help people who are fortunate to not have this problem to understand that a person having children or not having children should never be part of public comment. I cannot count the number of times that mothers have told me I was lucky that I didn’t have children. The number of times that relative strangers and very distant acquaintances have insisted that I must have children. That I would be the next one pregnant, or to not drink the water when I was surrounded by friends who were having baby showers. People who have had children easily are not usually aware of the feelings these questions bring up. For women in my situation this brings up painful memories of hopes abandoned, miscarriages, and an ever-present vacancy in the corners of the mind.
A request.
I am asking that when you meet someone new or reacquaint yourself with an old friend, simply ask how they are and how the family is. They will tell you what they are comfortable sharing. If you just hear about the dogs or cats, please don’t pry. Accept that that is the end to the family and move on.
