Finding Your Spark: Do Not Feel An Ounce Of Shame

Sunday, January 13, 2019

I decided to start the "Finding Your Spark" series to shine a light on different types of people who are following various paths – their OWN paths, whatever those may be. Sometimes those paths have been chosen; other times not. The whole idea is that there's no single way to live life and a person doesn't have to be "famous" to inspire others. These individuals have found what inspires them, motivates them, makes them happy. And they've run with it.

Read all posts in this series here.

This month's Finding Your Spark story is one I'm excited to share because it sheds a light on something that is often kept under wraps: infertility.

Selina met her now-husband in college and in March of 2016, they got married. That December, she went off birth control and started her fertility journey. The two tried for a full year with no luck. At that point, a woman is medically considered infertile. Throughout 2018, Selina had seen various doctors, eventually starting treatment in September. After three failed attempts, her and her husband are now starting testing to get ready for IVF.

There is so much more to her story and I'm grateful that I had the opportunity to learn more about it. In this conversation, we talk about her experiences with doctors, how a person's race, class, and age can impact their experiences, advice she has for others who are going through the same struggle or know someone who is, and more.

How and when did you realize that you were experiencing infertility?

I was diagnosed with Polycystic Ovary Syndrome (PCOS) when I was 13 years old. PCOS is a hormonal disorder. It can cause irregular periods and cyst on your ovaries. Due to hormonal irregularities, women with PCOS may experience elevated male hormones which may cause facial hair and cystic acne. Women may also face insulin issues and have trouble losing and maintain weight.

Infertility is something many women with PCOS deal with. When I was younger, I had very irregular periods. I would get one maybe two times a year and they would last 28 days. In order to help manage my PCOS, I started taking birth control.

Almost a year after we got married, my husband and I decided we were ready to add a new addition to our family. After talking to my OBGYN, I stopped taking my birth control and was told to try naturally for three months. She told me she was hopeful since I was only 23 and most women my age can get pregnant within the first three months of trying.

We tried for three months, and when I went back to my OBGYN, she told me she still was not concerned since I had time. We continued the natural approach for another year. After one year, medically speaking, a women is considered infertile. Due to my PCOS, I was not getting a period, so I knew there was a great chance I also was not ovulating.

What's the next step from there? Can you talk a bit about your experience?

Each woman's infertility journey will be different. There are a lot of factors that go into it – finances, access to proper medical care, and even the condition you are dealing with can influence an infertility journey.

After struggling with infertility for a couple months, I switched my OBGYN. I was directed by the third OBGYN to see an endocrinologist to help me with my irregular hormone levels. To be honest, I did not feel my endocrinologist was helpful. He ran some blood test which ruled out insulin resistance, which is great. He also pointed out my testosterone levels were slightly elevated but were nothing to be concerned about. He also gave me the dreaded “You are young and you have time.” Sadly, that is all he really did. I know other women have better stories with their Endos, but needless to say I was discouraged and never went back.

When I went back to my OBGYN and told her what the Endo said, she tried putting me on a medication that helps women who have an insulin resistance. This medication is also used by people with diabetes. With women with PCOS and an insulin resistance, this medicine may help regulate hormones. It was very frustrating since I did not have an insulin resistance. The other thing is that medication is known to cause stomach issues, where you cannot really hold down food. When I objected to taking the medication, she told me she could not help me and that I should go to a fertility clinic.

One month after the disappointing appointment with my OBGYN, I went to a fertility clinic. To be honest, I hated it. It felt more like a transaction than a doctor visit. It also was out of our price range. Insurance is very hit-or-miss when it comes to what fertility treatments and clinics are covered. At this point, we were struggling with infertility for more than a year and I was just tired. My anxiety and depression were the worst I ever had to deal with. I started calling off work for mental health days. Days I went to work I would come home, shower and cry myself to sleep. I decided it was time to get help. After seeing a therapist for four months and learning how to cope with infertility, I finally felt mentally prepared to get back at it.

After doing some research, I found a new OBGYN, and this time there were no talks of "you are young and you have time." She struggled with infertility herself and she was very sympathetic. She had me get a hysterosalpingogram (HSG). This was going to see if the eggs had a clear path to my uterus.

She had my husband get a test done to, in order to rule him out. To be honest, men have it easy. A blood test and semen analysis was all my husband had to do. On my 25th birthday, I spent my morning getting the HSG test done. It was a little painful and scary, but I got my results the second the test was done. The moment the doctor told me my tubes were clear I burst into tears. It was very bittersweet. On one hand my tubes were clear; on the other, I was not ovulating. No egg, no baby.

Once we knew my tubes were not blocked, my OBGYN prescribed me Femara. This is a pill that can help women with PCOS ovulate. The only downside is that it is not something women can be on long-term. Women take a pill for five days, then a couple days after that, they may ovulate. During this time, you try the natural way to get pregnant and hope you hit the ovulation window, if there is one.

In September of 2018, I took my first treatment of Femara, and sadly it did not work. Seeing another negative pregnancy test was heartbreaking. However, at the same time, I was in a way better place mentally and medically than I was just six months before. Since then, we have had two more failed treatments of Femara.

We only get three chances before we have to go back to a fertility clinic, so we have found a fertility doctor who we really like and are now getting tests done in prep for IVF. I am finally in a place to go the IVF route and am ready for what life has in store for us.

You mentioned in your message that one thing people forget about having infertility is how race, class, and age can impact your experience. How so?

Stereotypically infertility is seen as a rich white woman's issue, and it is not. It can impact any woman, and it does not care about your race, age or how much money you have. I truly believe that these factors can influence how you experience infertility.

Women of color have to constantly fight the stigma of being "too fertile." Even in our culture, it is not an issue that is talked about or even seen as a possible issue. It was extremely hard being a Latina with infertility. It was something that is unheard of in my family, and when I speak about it to family members, I can tell I make them uncomfortable. 

Class is a huge player when it comes to people’s experience with infertility. I thankfully have insurance to help cover some cost of doctors, medication and even my therapist. I still have some bills that come out of pocket, but they are manageable. Women who may not have a job may have issues paying the bills, or may not even have insurance.

I always joke with my husband that infertility treatments are like having a second job. At times it feels impossible managing infertility treatments and having a travel job. Families who can manage financially to have a stay-at-home wife/mother may not face the obstacles of trying to navigate infertility as a working wife/mom. Unfortunately, bosses may not be too understanding or happy knowing their employee are trying to have children. And infertility requires a lot of doctor appointments, sometimes multiple times a week.

When it comes to age, it is probably where it hurts me the most. I had so many doctors not take me seriously. I cannot tell you how many times I heard, "You are so young, you have time." And they did not show any urgency on getting me test or treatments. An older woman who is dealing with infertility will most likely get immediate help since she is "running out of time." I know not all medical professionals think that way but the ones who do don't even realize how much it hurts the person struggling. Infertility is infertility. It sucks and it hurts no matter how old you are.

I noticed that you phrase it as "having infertility" rather than "being infertile," which I think is great. Is that intentional? Can you expand on why you use that phrasing?

At first I think I did it out of denial. Not wanting to admit that I was dealing with infertility. To be honest, at first I was so ashamed that I could not do something that women are biologically made to do.

I am better at not feeling ashamed or guilty anymore and that is huge for me. Now it is more of a way to remind myself that it is not something that defines me. I try to avoid saying "I am infertile" and rather say something along the lines of "I am dealing with infertility" or "I am struggling with infertility."

What is a common misconception you've realized people have about infertility?

Sure, people can get pregnant easily and sometimes even on accident, but it does not mean that it is like that for everyone. Infertility is a lot common than people think. One in ten couples will have issues with fertility. The main reason I am so open about it is because maybe the one person who hears me talk about it or reads a Facebook post of mine will be going through it and realize they are not alone.

What is one thing you wish people knew about having infertility?

The severity of how difficult it is to struggle with it. It can cause mental health issues, it can be hard on a marriage, and at times seems impossible to get through. If you know someone who is struggling with infertility, please do not ask or tell them to adopt. Yes, we know that option is out there, but telling us that we should just adopt because we are having difficulties does not help the situation. Do not even get me started on how hard and expensive of a process adoption is. It really is not for everyone.

How can someone who doesn't experience this support a person who does?

Listen to them. Do not try to be their doctor or give them medical advice. Do not ask them if they have tried this or tried that. Listen to them vent. Be a shoulder for them to cry on. Check in on them. 

For example, whenever there is a pregnancy announcement for someone, I know it is always a bittersweet feeling. It is difficult because you are happy for the person but at the same time you are trying to navigate feelings of sadness and jealousy. Then there is guilt for feeling that way. My husband always does a fantastic job when he knows someone announced their pregnancy. He will ask me how I am feeling and if I want to talk about it. This has really helped me navigate all my feelings. 

And if you want extra good human points, educate yourself. One of my best friends, when she found out I was struggling with infertility due to my PCOS, looked up PCOS and educated herself about it. I do not think she realizes how much that meant to me.

What advice do you have for women struggling with infertility?

When it comes to doctors/specialist, do not settle. Do your research and find someone who is the best match for you. If you meet a doctor and you do not like them for any reason, do not feel obligated to keep them. Find a new one. Infertility is not easy, but having good medical professionals makes it bearable.

Also, do not be ashamed to seek help. Reach out to friends and family. You'll be surprised how supportive and understanding they can be. And do not feel an ounce of shame for seeking professional help.

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