Endometriosis – My Journey – Part 1

Today I am going to share a story with you about my recent health journey. My hope is that you will read through this post and either be encouraged to see the doctor when something seems off, or at the very least learn something about my health problem: endometriosis.

First, let’s start with a little story. In September of 2013, I started working in a not so great work environment. Compared to my current job, the environment was toxic. Deadlines, boss who took all the credit, infighting among coworkers, disorganization, you name it, it was happening here.

So over the four months I was working there, I noticed my pants started to tighten. And eventually, I couldn’t fit in them anymore. I brushed it off as stress weight due to job. And I was angry at the weight gain because I had actually been doing really well in the earlier parts of the year with working out, running, and eating well.

I left that job in December 2013 and to my current position, a far less stressful place. But I noticed that the weight was not coming off. Even while working out and eating well. In fact, when I tried amping up my workouts by going to group classes, I found myself having abdominal pain. And it was BAD. Again, I brushed it off as menstrual pain, overworked muscles, constipation, etc.

I still couldn’t fit in my pants. In fact, I was forcing myself to wear stretchy clothing just to avoid the thought of going up a size. I routinely got upset in the mornings when I tried to put on clothing and it just would not fit. My husband noticed. He was concerned. “Maybe it is time to see a doctor.” “This is going on for too long, I don’t think it is constipation.” Words echoed by some of my family members.

Endometriosis is the growth of tissue, similar to that of the uterus, that is located elsewhere in the body (pelvic cavity or abdomen for instance). This tissue reacts to the menstrual cycle just like the uterus lining: builds up, breaks down, sheds. While menstrual blood exits through the vagina, the endometriosis tissue has no way of leaving the body. This causes inflammation, scarring (adhesions), severe pain, gastrointestinal problems, and in some cases cysts (endometrioma). The symptoms and effects can differ by woman. Please see endometriosisinfo.ca for more information.

And then I started to feel the bump. Not a little bump. A baby sized bump. In my lower abdomen and pelvic region I had started to notice an extremely hard half basketball size bump. It I put pressure on it, I felt pain which is why those group workouts were so hard on me. Now I started to worry. Bumps can mean a lot of things and I didn’t like any of them.

So I breakdown and went to a walk-in clinic seeing. The doctor did the usual: asked about diet, bowel movements, sexual activity, took a pregnancy test (negative), etc. When I told him I gained 40 pounds in just the 4 months at that stressful job…he balked. “That is a problem. How did that happen?” I explained about the stress but he shook his head saying that was took much weight given my physical activity and body shape as the weight was entirely in my abdomen and pelvis.

Finally, I explained to him the pain I was in. He didn’t appear convinced that it was that bad so he laid me on the table and felt around the area. I CRIED. He pushed hard the first few times not expecting a response and he quickly apologized. He said there was a definite growth of some kind and that it was plenty time for an ultrasound.

So, ultrasound time. They wouldn’t tell me what they found while I was there, but I noticed the word “cyst” on the screen. That is when some family members mentioned they had similar growths. Their diagnoses were endometriosis.

When the results came back, I didn’t actually get that much information. It was a cyst. They could not tell where it was stemming from because its size blocked the view. That meant an MRI of the area to try to narrow it down. It was on an ovary but even with the MRI the results were difficult to confirm in terms of which side. After all the testing, the doctors were thinking endometriosis due to what they saw, what I told them about my menstrual cycle, and the family history. But there is only one way to know for certain that it is endometriosis and deal with the cyst at the same time.

A laparoscopy. A surgery. My first. Ever.

It was a good experience. I will not lie.
Thank you Ottawa Hospital and to those present for my stay and surgery.

After it all, I got the results. Number one, cyst removal was successful and approximately 15 pounds worth of fluid was extracted from the cyst. That’s over 3 litres worth. So yay! Instant weight loss. Number two, my diagnosis was positive for endometriosis. The cyst was an endometrioma, or a cyst created by the endometriosis disease. In addition to it, I found out that I have several adhesions as well which were what caused such a painful menstrual cycle my entire life.

Now that I knew what I had, I met with my surgeon who happened to be a specialist in endometriosis. We talked about the options but with the likelihood of my cyst returning so long as I have periods, we decided the best option was to suppress my menstrual cycle using an endometriosis specific drug. Now I experience no pain, have less risk of cyst recurrence, and can focus on getting my body back.

Now, I am not an expert in all things endometriosis. So if you want more information including symptoms, treatments, and effects on fertility, then I suggest the website: endometriosisinfo.ca. This was suggested by my surgeon and it gave me a lot of answers and made me realize what my body was going through.

Thanks for reading, I know this was a longer post but thank you for reading if you did. I will be back soon to talk about the emotional impacts of this journey. Feel free to comment below with questions or to share your own experiences.