What I want you to know about ovarian cysts in young girls

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Mary McDoula.

My 13 year old daughter recently had an ovarian cyst the size of a softball removed. Along with her left ovary and fallopian tube. Sadly, this is very common in women, include young girls. The surgeon (ob/gyn) told us several times "It's not because of something you did or didn't do. This just happens." He explained that there are 3 different kinds of cysts. 1) The kind that come and go on their own 2) The kind that can be diminished with medication and 3) The kind that keeps growing and growing and needs to be removed. She had the third one.

How would you even know if your daughter had one?! How were we supposed to know?! Well, looking back, I saw possible indicators, but saw them as separate issues.

For example: For several months she complained of cramping after her period. My sister said that she cramps when she's ovulating and when I called my gynecologist the nurse said this cramping is normal. My daughter had never really experienced anything painful so I had no way of gauging her pain. She would ask for ibuprofen (that didn't really help), but I just thought she had a low pain tolerance. Apparently as the cyst grows it twists around the ovary and back. When it gets too big it just keeps twisting around. Ouch!

Another example: At the beginning of February she complained that her left hip was hurting really bad. Thinking it was a sports injury, her dad took her to the pediatrician and had it x-rayed. Everything looked good so I took her to the chiropractor. After her visits she felt better.

On Monday, March 4th, she called me from school begging me to pick her up early because her hip hurt SO bad. I brought her home, gave her 2 ibuprofen (I've only ever given her 1), sent her to bed and waited for the chiropractor to open back up from lunch at 3:00. While we were waiting I rubbed her leg for her like the chiropractor does. She had mentioned that her lower abdomen was hurting too. I just thought maybe it was referred pain. I tried to touch her abdomen, but she said that made it hurt more. I did notice that her belly was a little bigger than I remembered it, but thought that maybe she was making poor food choices at school.

On Wednesday, March 6th, I picked her up from school. (I didn't have her on Tuesday.) When I picked her up she was in the most excruciating pain I had ever seen her in. When we got home I looked at her abdomen again and it was 3x the size that it was on Monday. I immediately called our pediatrician (different than the one she saw with her dad). Thankfully, she got us in an hour later. The pediatrician took one look at her and knew there was something seriously wrong. After having her lift her shirt slightly she said it was either appendicitis or an ovarian cyst. They wheeled us down to the Emergency Room of the hospital they are attached to. They admitted her right away and did an ultrasound. I've seen plenty of ultrasounds to know that tissue inside the body is lighter on the screen. When the wand was place in the center of her abdomen right under her naval all we saw was a big black ball. They knew what it was and put her on morphine right away. They called an ambulance to take her to Children's Hospital of Orange County (CHOC).

We arrived at CHOC just after 9:00pm. They got her into a room, asked a ton of questions and assessed her again. About an hour later they woke up the surgeon on call and he agreed that the removal couldn't wait until the morning. He got to the hospital and prepped her (and us) for surgery. I wish I could have done it for her!

The surgery took just over an hour from start to finish. He originally thought it was on her right ovary because that was where it was most painful when he pressed on her. Turns out it was her left. Because of the size of the cyst it had completely cut off blood flow to her ovary and fallopian tube. They had to be removed as well. He also removed a much smaller one from her right ovary. He said that this should not affect her ability, or make it difficult, to reproduce. Nor will she need hormone therapy.

Because of the size of the cyst it had taken up a lot of her blood supply. The day after her surgery they checked her hemoglobin again and it had dropped from its already low pre-surgery count. She was given two pints of donated blood.

On a pain scale of 1 - 10 the highest she said her pain reached was a 6 or 7. I would say it was a 10! She has an incredible pain tolerance!!

***Please share this with everyone you know who has a daughter!!! One of the nurses mentioned that she recently saw a 7 year old in for the same thing.

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