Finally a Diagnosis {Endometriosis: A Series}

by Mama Queenly on August 4, 2013

I got my first period when I was nine years old. I had no idea what was happening to me because no one had explained menstrual cycles to me yet. But why would they?? I was nine, for Pete’s sake!! I had to have my period explained to me by the school nurse because it started in the middle of class; I got blood on my chair and the kids talked about it for months. I was so distraught over what was happening because I legitimately thought that I was dying.

Me at age nine

By the time I was fourteen my cycles had doubled in frequency and intensity. I would have such heavy, painful periods that I would have to stay home from school for the first day or two. I had a doctor’s note in my school file that was laminated because that had become standard for me. I would lose so much blood that I would pass out and the pain often made me vomit the whole first day.

My mother started taking me to the gynecologist when I was fourteen because she didn’t know what else to do and our family doctor wasn’t qualified enough to handle the issue. At fourteen I had my first pap smear which was scary, awkward, and painful.

Over the next few years we would get several “educated guesses” as to why my cycles were so horrendous; they ranged from plausible to preposterous. One doctor told my mother that I was actually twins at one point, but that I had absorbed my twin. I had to have my kidneys checked to make sure I only had one set and doctors warned me that I might expel teeth and nails from my body when I was older. The longest running one being that I had a very real condition known as uterine didelphys (as shown in graphic below, diagram A), which is when a woman has more than one uterus and cervix. Can you imagine hearing news like that when you’re only 14 years old? I thought I was a massive freak. I remember explaining it to my first boyfriend and examining his face for judgment.

udidelphys

That was the diagnosis I believed for close to six years. I believed that I would never have children and also that if I were to maintain a pregnancy to full term that one or both of us would die. I had originally wanted to have six children and had names picked out for all of them, of course. I come from a family of six and my mother had made it look so easy. Hearing that I would never be able to become a mother on my own was heart breaking!

me-18

When I was 19, a reproductive specialist who was performing a cervical leep on me for cancer cells confirmed that I indeed only had one uterus and cervix, respectively. He mentioned to me then that I might have endometriosis, but that he would have to look inside of me to make an actual diagnosis and because of my age he preferred to “wait and see” instead of performing a laparoscopy.

He also told me that if I should ever get pregnant that there was a large possibility that my cervix would no longer be strong enough to support the pregnancy and that I could be at risk for pre-term labor. He gave me a 30/70 ratio of survival for any potential pregnancies. I took a break from school and moved home because I couldn’t handle all of the stress.

handstied

Fast forward through two healthy pregnancies and thirteen years later I found myself dealing with ovarian cysts and fibroids and having to have a laparoscopy to find out what exactly was going on. The cysts and fibroids were causing unbelievable amounts of pain! I didn’t know what was happening! Some days I would be fine and then suddenly I would not be able to even stand up without doubling over from the intense, stabbing pain. The cysts would cause very heavy bleeding too (usually if they happened to burst) and it was very scary; I would bleed so much all at once that I feared I was hemorrhaging. Finally a doctor confirmed what other doctors had suspected in the past; that I did in fact have endometriosis.

Endometriosis is not uncommon, but has varying effects depending on the woman. It is when the uterine tissue grows in other areas of the body outside of the uterus and most times causes abnormal bleeding, pain, and can sometimes cause fertility issues.

endo4

The most common complaint from sufferers is pain, which can come in varying degrees and at different times, not specifically during their menstrual cycle. Some may experience pain during a bowel movement, while others might experience it during or immediately following intercourse.

For me, I have a large build up of tissue behind my uterus so when my cycle is coming I will get severe lower back pain that is freakily reminiscent of back labor. It was always difficult growing up with cycles as severe as mine because I have had to opt out of a lot of activities. I would have to miss out on things because the pain and bleeding were so debilitating and I was often criticized for overreacting over “just having your period.”

Other girls could never really relate to me because their cycles were not affecting their quality of life; they couldn’t understand the severity of what I was experiencing because their cramps didn’t make them vomit for hours, they didn’t need prescription pain killers to function, and they could wear tampons with confidence and not soak through a tampon and overnight pad after just a few hours. (Yes, I would wear them together to make the pad last just a little bit longer. It was the only way I could get through the school day.)

Even when I’m not dealing with a cyst and I don’t have my period, I have constant abdominal pain from the tissue build up from past cycles. I have so much blood loss during my cycles that it usually takes me about a week or so to start feeling better after my cycle has ended. Now that I have two boys under the age of five, it is increasingly important that I can function normally on a day-to-day basis.

endometriosis-1

Over the past year and a half I have had to rely heavily on friends and family to help care for my boys when I am ill so that their father can go to work without worrying about what might happen while he’s away. But people aren’t always available and we both worry about me passing out from blood loss and possibly traumatizing my oldest. A boy who is old enough to understand that something is seriously wrong with me and has asked more than once if I’m “going to die” and if I “will be with him forever”; questions so much bigger than I’d prefer him to worry about at four years old.

I recently sent in all of my medical records and applied for an appointment with the University of Michigan’s Endometriosis Center and Pelvic Pain Clinic and am looking forward to finally getting some answers! While I was filling out their exceptionally thorough application, it was amazing how relevant their questions were to me!

questionnairecollage

On the form they asked about my mood, my sleep habits, and my energy level; there are so many different ways to answer questions about pain level and frequency, as if they understood that it is varied dependent on the patient. Their packet was full of questions that no one has ever really touched on before; it gave me a glimmer of hope about my situation that I haven’t felt in years.

I invite all of you to join me on my journey to the University of Michigan to find these answers. I plan to journal about my experience in hopes that some of our blog readers may also feel that glimmer of hope and that they won’t feel like the only person going through their unbearable “just a period” cycles anymore! Be on the lookout for a post about my first appointment!

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