I’ll Have MS My Whole Life, but Dealing with Infertility is Harder

Stephanie Cartin was diagnosed with multiple sclerosis (MS) at age 27 and it has been tough for her to deal with both the symptoms and the treatments. Currently, MS can’t be cured but Cartin has learned how to manage the challenges.

Dealing with infertility is something else entirely. She’s always known that she’s wanted to be a mom but had no idea she would have to deal with infertility, especially as early as age 30. She is a driven, successful business owner and has a supportive husband, but no amount of success or support prepared her for the often-shocking, painful, and confusing infertility odyssey she has been on. She is resolute, though, that she’s not letting MS or infertility sway her from her focus on being a mom and starting a family. Here’s her story.

I Was Meant to Have a Family

As long as I can remember I’ve wanted to be a mom. When I was eight years old, my mom had a miscarriage. I remember her telling my sister and me that she was pregnant and not long after she told us at dinner that the baby had died. I was absolutely devastated and also confused. I had longed to be a big sister. For months after the loss I remember crying at the sight of pregnant moms. I could not understand why it was possible for others to become a big sister but not me.

I started babysitting by age 10 and loved taking care of the kids. It was natural for me.

My Medical Troubles Started Early

Meanwhile, when I had just turned six I got very sick. I had what we thought was an ear infection. I had an infection of the parotid gland (one of the salivary glands) in the side of my neck and had surgery to drain the infection.

This was my first major surgery and during this time I learned to speak up for myself, ask questions and truly advocate for myself—even at age six. I was sick a lot after that—one infection after another. I was always going to the doctor.

Multiple Sclerosis Diagnosis

I was diagnosed with multiple sclerosis the week I turned 27. [Multiple sclerosis is a disease of the central nervous system that interferes with communication between the brain and body. Damage to the nerve fibers causes lesions or scarring, also called “sclerosis.”]

I was having terrible pain in my back and down my neck. I woke up one morning and could not move my neck at all. I remember thinking it was either from sleeping with the air conditioning on high or maybe a pinched nerve. I had to go for two MRIs, the second with contrast. An hour after my second MRI my phone rang and the doctor was certain it was MS. I had lesions on my brain and my cervical spine and after visits to several neurologists I finally found a doctor I felt comfortable with, not intimidated by.

My doctor said I needed to get medication to stop the lesions from developing. The pain got better with steroid infusions, but during the first few weeks I had side effects: I couldn’t sleep and my heart was racing.

When I was first diagnosed I kept thinking, who’s going to want to marry me? All I ever wanted in life was to get married and have a family and I was so scared after my MS diagnosis that my dream was not going to become a reality.Next month I will turn 34 and I have had three significant MS relapses over the past six years. I have tried several medications but have not been able to tolerate any of them. I’ve experienced too many side effects, like allergies and depression. I had to stop (and I haven’t been on medication since 2015).

I resolved that I wasn’t going to let this get me down. I told myself—thank goodness I was diagnosed. I’m not going to let this ruin my life. I made sure I was going to be healthy.

Instead, I have focused on exercising (including with a personal trainer at times) and trying to eat well.

Since I am not on medications my doctor has me come in for MRIs every six months. Many times there will be a new lesion. I’ve struggled a lot with horrible fatigue. My neurologist had suggested I try the medication IVIG as it is safe when trying to get pregnant, however my insurance company didn’t approve it. Despite these issues, I’ve managed to get the MS under control.

MS and Infertility?

When I was first diagnosed with MS I kept thinking, who’s going to want to marry me? All I ever wanted in life was to get married and have a family and I was so scared after my diagnosis that my dream was not going to become a reality. I had met my now-husband in 2010 and although he was not officially my boyfriend at the time of my diagnosis he was always there for me. It kept me up at night wondering if he would truly want to be with me knowing my future with this disease is unknown.

But, he did! In February 2015 we were engaged and we got married that October. I was 31.

I’ve had so many medical challenges over the years so once we were married I wanted to check to be sure that there were no issues with what I might pass along before we started trying to get pregnant.

I had no reason to believe that I wouldn’t be able to get pregnant. I had always had my period every 28 days from the time I was 15, though they were heavy periods. In my early 20s I started getting mid-month bleeding and had told my gynecologists over the years. The doctors would send me for an ultrasound then say they saw nothing. Once in a while if the doctor saw a cyst she would say that the mid-month bleeding might have been from a ruptured cyst.

My family fertility history was mixed. I knew my mom had a history of miscarriages before the one I experienced when I was eight, but my sister got pregnant immediately.

Our Fertility Journey So Far

I didn’t think I would have trouble getting pregnant but after doing some genetic testing, we had some concerns about the possibility of passing along Fragile X Syndrome. The reproductive endocrinologist pushed us to consider IVF.

I really didn’t want to put myself through IVF, though, because of what I’d been through with MS. And I read that medications for IVF can cause MS flare-ups because they stimulate your immune system. I was freaked out. If I didn’t need to do IVF I wasn’t going to.

Emotionally, dealing with infertility has been so much harder for me than with MS.We decided to try to get pregnant naturally and would do early genetic testing once pregnant. We tried on our own for a year with no success. I was still only 33. We went back to the RE.

He tried again to talk us into doing IVF but we pushed for IUI—with as little medication as possible. I was still having mid-month bleeding all of this time so I had an ultrasound and the doctor noticed what looked like a polyp and said that this could be the cause of the bleeding and why I had not been able to get pregnant.

After a traumatic HSG test to check my fallopian tubes and upsetting, inconsistent care from the clinic, which I had previously had faith in, I was referred to Dr. Brian Levine in New York. With further diagnostic work and his diligence, he figured out that I had multiple polyps not just one, and removed them. (My mid-month bleeding finally ended.)

Dr. Levine spoke to my neurologist and they worked on a plan together, so he can avoid doing something that could cause problems with my MS, and he has been guiding us through basic IUI treatments.

We’re in the process of the fourth IUI treatment now but if it doesn’t work we’re going to move to IVF, but with the least amount of medication possible—and with trust in my doctor, which makes a big difference.

Physically, I’m feeling OK; I’ve been able to tolerate the IUI meds. Though I’m super bloated and I’ve gained weight, I just keep telling myself it’s okay because I want to have a baby. The harder part for me is that I haven’t been exercising. I’d psyched myself out and get nervous that if I exercise during the TWW, it won’t work even though that is likely not the case. Emotionally, dealing with infertility has been so much harder for me than with MS.

But, the way I’ve trained my brain to get through medical issues is I go into problem-solving mode. I have this end goal and it’s not going to stop me from moving forward each day.

How I Cope

I have the support of my husband and my incredible friends. Also, after I was diagnosed with MS I went to a therapist. So much that I’ve learned with her I’ve been able to carry forward with what I’m dealing with now.

I own my own business—a marketing agency. I’m pretty resilient and I have an incredible business partner. We started with just the two of us and now we have 30 employees. I have flexibility and can leave for doctor appointments and there are lots of them. I’ve been very open about my struggle with fertility one-on-one with friends and even people who work for me.

With MS, I’ve learned to live a healthy lifestyle—to not overwork or get overtired, to listen to my body. I had one MS relapse last July but since then I haven’t had to think about it much. I’m now also focused on staying healthy for and focusing on my fertility journey.

The Future

I’ll keep going until we have our miracle baby. The void in my heart and silent suffering sometimes is too much to bear. But I will keep going. I repeat my mantra: Focus on the good and tomorrow is a new day.