PCOS Awareness Month: Niki’s Story

This week, we’re continuing our coverage of Polycystic Ovarian Syndrome (PCOS) Awareness Month and and sharing your stories. We asked you, our community members, to share your PCOS stories and so many people generously stepped forward. This week, we’re sharing Niki Maher’s story.

How did you discover you have PCOS?

Interesting question, since the first time I got my period  (about 13), it was never regular.  Some years, I would only get a period once or twice a year.  After awhile, my mother and I brought this up to a doctor who then sent me to an Endocrinologist.  After a bunch of tests, I was told I had hyperprolactinemia, which is a high prolactin level.  Sometimes that can be caused by a tumor on the pituitary gland.  Over the years that followed, I was put on medication for hyperprolactinemia, underwent MRI’s, which did not show any tumor and put on birth control pills to give me a regular period.  I switched Endocrinologists a few times because I did not feel satisfied with answers I was getting.  That is pretty much how things stood until after I was married and after a few years we wanted to have a baby.  I kind of knew deep down there would be issues getting pregnant.  I went off birth control for quite awhile and periods stopped coming and I was not getting pregnant.  After over a year, my OB decided to try Clomid.  That did nothing.  My OB had no clue what was going on so she sent us to a nurse practitioner who specialized in infertility.  She put us through a bunch of tests, turns out my husband has male factor infertility.  PCOS was still not mentioned.  We went to a urologist who told us that with the issues both of us had that IVF (in vitro fertilization) would be the only way we could conceive.

We decided to wait for awhile due to the high cost of IVF and our insurance not covering any of it.  We also were not finding doctors that we really liked. We felt like if we were going to spend that kind of money and undergo IVF, we wanted specialists who we both felt comfortable with.  Months later, I got involved in an infertility support group and started finding out about more area specialists.  One of my close friends recommended a clinic in Illinois, we live in Wisconsin.  We made an appointment and made the 2 hour trip just to meet the doctor and see what we though.  We both felt super comfortable, especially once we found out the doctor and his wife underwent infertility treatments. We felt as though he really understood not just physically what we were going to have to go through, but emotionally as well.  Before we left the office, we decided we were going to use this doctor and clinic.  Future appointments and tests were scheduled.  An ultrasound tech told me that she thought I might have PCOS, sure enough, the doctor confirmed it. I had PCOS suspicions and brought this up to the most recent Endocrinologist I had and he told me “No, you don’t show all the symptoms”.  Well, not everyone is going to show all the symptoms.  The fertility specialist immediately put me on Metformin for the PCOS.  Metformin is a very difficult medication for some people to adjust too, I had awful stomach issues.

Did PCOS affect your ability to conceive? How?

I do not ovulate so therefore was not getting pregnant.  Even with taking the fertility drug Clomid that was not doing anything.

What treatments did you try and what worked for you?

We tried Clomid without luck. Once we saw a fertility specialist, we were told that with my PCOS and hyperprolactinemia combined with my husband’s male factor infertility, IVF with ICSI (Intracytoplasmic sperm injection) would be what would give us the best results.  Because I have PCOS and run the risk of having my ovaries overstimulated, I was very carefully monitored while undergoing IVF.  I also underwent acupuncture treatment at the same time.  Our first round of IVF was successful, two embryos were transferred and one implanted.  We gave birth to a healthy baby girl.

Once I stopped breastfeeding, my OB put me back on Metformin and now I do have regular periods.  My daughter is now 2 and it’s very obvious that if we would like any more children we will most likely need to go through IVF again.

If you could give one piece of advice to PCOS sufferers, what would it be?

Find a specialist who is familiar with PCOS.  There are many Endocrinologists who do not seem to know much about it.  Luckily, I found a great fertility specialist and then once I was pregnant I found a new OB who was familiar with PCOS. She now treats my PCOS.  Just because you have PCOS, there is hope to conceive.  There are so many advances in fertility treatments.  Some people with PCOS are able to conceive just by taking Metformin or another medication and do not even need to undergo more invasive techniques.  Don’t give up.

How would you describe PCOS, and how it affects your life, to people who don’t know anything about PCOS? What would you like the general public to know about PCOS? – Am answering these two questions together

PCOS is estimated to affect between 5 and 10 percent of women of reproductive age.  It affects women of all nationalities and races.  It is one of the most common hormone disorders among women of reproductive age.  I would describe PCOS as a disease that causes poly-cycstic ovaries and anovulation, which can result in irregular menstruation. Insulin resistance is also related to PCOS along with high cholesterol levels.  Some things that do not affect everyone include:  acne, excessive hair growth and obesity.   I will most likely never get pregnant without medical help.  With IVF, I was able to conceive and while pregnant I developed gestational diabetes, I was told many women with PCOS develop this.  Luckily I was able to treat it with diet and exercise so no insulin was needed.  Not fun to really avoid carbs while pregnant but I knew having a healthy baby was the most important thing.  I was also told that I’m at higher risk of developing diabetes during my life.  Women with PCOS need to be careful with their diet choices and make some sort of exercise part of their way of life. Women with PCOS sometimes also have low milk supply when it comes to breastfeeding.

If you have children now, do you think that your fertility difficulties made you a stronger person? A stronger couple? A stronger parent? Why or why not?

I most definitely think my infertility made me a stronger person.  I had to go through so much emotionally and physically while trying to conceive and failing and then during IVF treatment.  I got to a point that I was so depressed because I could not get pregnant that it was so hard to be around people who conceived easily and naturally.  I joined an infertility support group and met many other women who were dealing with similar problems. Being in a support group really made me aware that some people even had greater hurdles to deal with than I did.

I think that infertility has brought us closer as a couple.  This was such a rough and emotional journey we’ve been on over the past few years.  If we would’ve been the type of couple that blamed each other and pointed fingers at the other one when we couldn’t conceive, we probably never would’ve made it.  My husband is so very supportive and really was there for me emotionally, especially when I was depressed.  We worked together to find a specialist and plan our treatment.

I feel like we are pretty strong parents now and appreciate so many things about our daughter, Hadleigh. We try not to take anything for granted because we know how difficult it was to get to where we are today.  Even as I got up 3-4 times a night with a crying newborn, I felt lucky to be a mom.  I look back at where we started a few years ago and where we’ve gotten too and I’m amazed.  I stopped working when our daughter was born and am now the President of our local MOMS Club.  Me, the infertile, a stay at home mom and in a MOMS club! I never would’ve thought.  My how life changes.

I enjoy talking and trying to help people especially when it comes to infertility and IVF. If I can help one person or answer their questions, I feel great. I tend to research things to death as I was a librarian before my daughter was born.