Every morning, when I wake up, I walk around my apartment getting ready, or when I am in the middle of doing chores on the weekend, I remind myself that I need to get back on my blog and make a life update. Since I was last here, I have traveled and got a new great job. So, friends, tuck in and let’s chat. It’s going to be a long one.
Things have happened since I have talked to you all. I spent a great week in Michigan, and a great week after with my cousin, Maiya, for her 18th birthday. We spent time at the beach and then in New Orleans. I also was able to find an amazing job, that I feel so lucky to have, after looking for only a couple weeks. I cannot say how lucky I feel.
Now, for what has been on my mind for a little while. This is what I wanted to write about for two weeks, but I have felt like I don’t have quite enough information to feel like I can write about it. I have started and restarted this post several times, and I just do not know where or how to begin.
For as long as I can remember, I have had irregular cycles, unless I was on birth control. I thought that was normal. Sometimes I would have two cycles in 30 days, sometimes I would skip a cycle altogether. My previous gynecologist looked at a record of my cycles and said she wasn’t worried, so I tried not think about it anymore. I also suffered from severe cramps for a very long time, the worst was when I was on the Nuvaring birth control. I used that for a little less than a year, and every month, I would call out of work at least once because I would be in so much pain that I couldn’t move, let alone work. So I stopped using it. The severity of the cramps lessened, but were still painful, although after experiencing that, I have been able to tolerate what I do have for the most part. I had cystic acne, oily skin, and had some hair growing under my chin. That sucked. Since I stopped using the Nuvaring, I gained a lot of weight, although I have always struggled with my weight, and have had the hardest time losing it.
I came up with every reason to excuse away my symptoms. Maybe my cycles were irregular because of stress, or I was traveling, or my weight, or just because. The acne? It was because of my diet, maybe. Or, maybe I just wasn’t taking good enough care of my skin in general. My weight was also because of my diet, and the fact that when I changed my job, my activity level went down. The cramps, well some women just have that. I was the master of making up excuses. But I was also one of those WebMD people looking up all of my symptoms on the internet. I found that my symptoms fit best with polycystic ovarian syndrome, or PCOS. The only symptom I didn’t have were cysts on my ovaries, so I was always unsure.
Also, I was scared to ask the question. If you ask the question, you may get an answer that you don’t like.
But this summer, after finding out that I have family members who have PCOS on both sides of my family, I decided it was time to officially ask. In the beginning of September, I talked to my doctor. She chuckled at me good-naturedly when I listed my symptoms and said that I wanted her opinion on whether or not she thought that maybe I had it. She asked when my last cycle started, which had been a week or two before and I gave her a history of my cycles for the last year and a half. She said “It sounds like you’ve done your research.” I had. My doctor said that given my symptoms, it was possible, but that she wanted to run blood work to check for diabetes, which goes hand-in-hand with PCOS sometimes, and to check my hormone levels. She said that sometimes PCOS shows up in a blood panel. Sometimes, it doesn’t show up. Sometimes, you will have blood work done one month, and it will be negative, and then the next month it will be positive. That was not reassuring. She said after we get the blood work back, if it was inconclusive, we would do a pelvic ultrasound. I left the doctor’s office uneasy and anxious. Because the appointment was in the middle of the day, and in all the research I had done, I never checked how they diagnosed PCOS, I didn’t anticipate needing to have blood work done, so I hadn’t been fasting for it. I went home without going to the lab and pushed it out of my mind.
A thing you should know about me: I hate needles and having my blood drawn. I put getting blood draws off as long as I possibly can. Which is why it took me a month to have the blood work done.
Well, fast forward a month, and I had, again, skipped a cycle. I was sitting on the couch, and realized “Holy cow, it’s October 1st.” I checked the app on my phone to see if I had cycled in September, and maybe forgotten it, and saw that I had not. I told myself “Well, I just started a new job. Maybe my body is just stressed from the change in my schedule. Maybe that’s what happened.” I knew I was just trying to make myself feel better. Remember, friends. I like to make excuses! I looked at the lab order sitting on my kitchen table, because I still had not gone and had my blood drawn, and knew it was time to go in. That Friday, after work, I went to the lab and let them take my blood. The following Thursday, after waiting anxiously for a week, my doctor finally called me.
My blood glucose levels were normal. No diabetes. I am also not pre-diabetic. That’s the good news. But – it seems like there is always a “but” – my testosterone levels were high. Really high. Sky high, honestly. She also said that my sex hormone binding globulin (which I had never even heard of) was very low. This is how PCOS shows up in blood work. My doctor told me she could give me a prescription for a medication to combat any hair loss and the small amount of hair growth under my chin, but I told her that the hair growth is manageable on my own. It’s not bad enough that I feel like I need a medication. And the only option I have been given so far to combat all of my other symptoms is birth control. This is the common treatment for women with PCOS who are not actively trying to have a baby, which my husband I are not. But since we got married, we have not been actively avoiding pregnancy. We have operated under the idea that, if it happens, it happens. I explained this to my doctor at my initial appointment, and again over the phone when she gave me my diagnosis. She didn’t say anything when I said that. That dead air on the phone was pretty deafening. She told me to call the office if I had any other questions. That was the last time I talked to her, almost three weeks ago.
I didn’t have any questions at the time. I was at work and was still trying to process everything, as well as do my job. But the first thing I did when I got home, after telling my husband and my family my fun new news (listen for sarcasm there, friends.), I started my research. I spent hours on the computer over the next few days reading everything I could, and looking for other forms and types of treatment.
I experienced so many “Ah-ha” moments. I knew my acne was probably caused by PCOS, but my oily skin that I have been complaining about for years? That’s a symptom. Mood swings? Check. Dark skin in various areas? Yup. Hair loss from the scalp? Well, I thought maybe that was stress and because I wear my hair up too often or use too much heat, even though those had never really been issues before. But that’s a symptom too. All these little things I had noticed about myself, I had written off as normal, or stress related. Like I said, I am really good at making excuses for myself.
But now I have an actual answer.
I still have more questions than not. The biggest being: Am I going to have a hard time getting pregnant? PCOS is the leading cause of infertility in women in the US, according to the many, many articles I read over the internet this weekend. It affects around 200,000 women each year nationally. I reached out to a couple friends, and it turns out, I know 4 other women who have PCOS, including two family members. It is so common, but no one talks about it.
Anyone who knows me knows how badly I have always wanted to be a mom. I have had baby-fever for years. Literally, years. Probably since my sister had her first, which was 8 years ago. Yes, I was 19. No, I was nowhere near ready to have a baby, but I would not have hated having one. (Don’t worry, family. I was not being irresponsible or trying to have a baby. I promise!) I love babies. The thought that getting pregnant will be twice as hard, and that I will be more likely to have complications during pregnancy scares the life out of me. I am a “worst case scenario” person. I assume the worst is going to happen so I can prepare. The last thing I want is to be caught off-guard and not know what my next step will be. Maybe I am an over-planner? But I don’t know how to prepare for something like this.
So before trying to start preparing for the worst case, I have decided to get a second opinion on what my treatment options are, and how we will proceed when Peter and I decide to actually start trying to get pregnant. Will they tell us to try naturally for a shorter amount of time? Will they immediately offer assistance? Or will it be business as usual – “Try for 12 months, and then come see us if you’re not pregnant.” How likely is it that I cannot get pregnant?
Right now, I have no answers. I hope no one came here looking for any. I am not an expert on PCOS, and there are far better sources to go to, if you are looking for insights. I am just another girl, joining the large group of women with a hormone disorder. If you are in the same boat, follow along. I will try to be better about updating my blog with news and how I am progressing and dealing with this. But I also do not want to turn my blog into a PCOS only blog, because I do not want my life to be about only that, even though for the last two and a half weeks, it is all I have thought about with my spare time.
This was not a fun post to write. But I do feel better after having written it. It has been on my mind for a little while now, and I just haven’t known how to write it. But, like I have said before, sometimes, you just have to start.
And sometimes, there is no good ending point for a post. So, like I have done before, I will just have to sign out.
Send some good vibes my way, friends.