I’m Sarah. Wife and mom to 3 beautiful babies, all conceived naturally. I am blessed.
When I was 14, just a few months after starting my menstrual cycle, I started having seizures. The epilepsy was controlled for 4 years by anti-seizure meds. During that time I did notice that even though friends would complain about having their period, I didn’t complain nearly as much. My time of the month was more like “whenever it felt like showing up”. Through the years I did notice things that seemed like hormonal imbalance issues, but I was in high school. What did I know?
My experience with doctors has been… well, let’s just say it sounds kind of unbelievable that one person could have such bad luck with doctors. I had seen many neurologists because of my epilepsy. At that time I think doctors were kind of oblivious to the fact that women with epilepsy have a higher chance of having PCOS than the general population. My doctors through the years were not only rude and egotistical (which really stunk because I just wanted to find one nice doc and stick with them!) but not one of them brought up PCOS, ever had hormone levels tested or talked to me about hormones.
Fast forward to 1998. I was dating my boyfriend (now hubby) and on one particular day I had my hair back in a ponytail. He was sitting in the seat behind me and rubbed his finger along the back of my jawline (near my ear) and said, “You have a cute little beard here!” I was in shock. So embarrassed. I pulled the ponytail out immediately. I can honestly say, I have not been comfortable in my own skin since that day. I had no idea the hair was there (thought it was just that light blond hair) but hirsutism had already started to take it’s toll. I started to see patches of skin that were darker and some skin tags and the belly fat just seemed to pile on. I could gain weight faster than anyone else I know!
Within a few years I figured out what I had. I just didn’t know anyone who specialized in PCOS. Heck, most doctors were still clueless about it! In 2005 I saw a new neurologist for my epilepsy. I started to wonder if medication side effects were causing my PCOS. I thought she would laugh at me and say I was grasping at straws. Instead she said that I probably do have PCOS, based on my symptoms, but it wasn’t the meds that caused it. She told me that a very high percentage of epileptic women (I believe it was over 50%) also have PCOS. Finally someone acknowledged my concern! I wasn’t crazy!
My doctor suggested that I see a reproductive specialist. I went to see him and it was THE WORST doctor visit I have ever had. Quite honestly, one of the worst days of my life. Never before had I felt so belittled and patronized and insulted. I was not Trying to Conceive. I had two children and I was happy with that. I simply wanted someone to help me combat what I knew was PCOS and give me a diagnosis so I could be validated.
Instead, this doctor proceeded to tell me that if I was looking for a weight loss pill, Metformin wasn’t it. I again told him that I wanted to know if I had PCOS and how to combat the symptoms. He told me that all his patients who lose weight on Metformin gain it back (though another doctor in the room said his patients maintain their weight loss if they took care of themselves and ate right).
I again told him I wanted to know if I had PCOS. Then he told me that it was a loonnnngggggg process. Lots of testing and labs. Very expensive. It would take a long time. They would have to rule out everything else first. Very expensive. Wow. This guy REALLY didn’t want me for a patient. Then he went back to the weight issue, asking me if I had ever tried to lose weight.
I said “Yes, many times”. He told me that he believed that I should look into surgical options for weight loss. He told me that was probably the only way I was going to lose the weight. He then left!! Not a word about moving forward for a diagnosis, trying a medication, nothing! His medical student APOLOGIZED for his words and behavior after he left the room. I was hurt. I was angry. I felt defeated. I felt sad. I was depressed for weeks. This horrible doctor had taken away MY HOPE. How dare someone do that to another human. I never pursued it again. I was too afraid of being hurt.
So, all these years I have been dealing with the weight gain (over 130 pounds since I met my husband) and the ever increasing facial hair issue. I think that may be the most dehumanizing. No woman should have to shave her face or pluck her hairs from her face until she is red and scarred and in pain. There is help. But I suffered all these years because I was too afraid to get back out there and try a new doctor.
I believe that my seizures are linked to my hormonal imbalance. The neurologist told me that epilepsy causes PCOS because the seizures cause the body, the brain, the endocrine systems, your receptors, etc to start to misfire. But I believe it’s actually a vicious cycle. Yes, my seizures may cause my body to be malfunctioning, but I also think that the hormonal imbalance is causing my seizures. They are known as catamenial seizures and they are specifically hormone related. A couple weeks ago I was reading an article about how the Nuva-ring helped some epileptic women stop their seizures by balancing their hormones.
So, when I took my son in for his 18 month checkup, I asked my doctor about the Nuva-ring. He said the nurse practitioner could help me out with that and make an appointment with her. But then I said, “Well, what if I don’t want it for birth control reasons?” He was intrigued. I went on to tell him about the hormone imbalance issue, how I think it’s related to seizures, etc. He told me to schedule a long appointment with him and that he does specialize in hormonal issues for women. Wow!!!! I almost cried (okay, in the car I did cry!).
He mentioned Metformin, checking my hormone levels and more. NO DOCTOR has ever taken the time to even care about this issue for me, let alone make a plan of action! He is really going to bat for me and it feels so good! I may finally get a diagnosis, but what’s even more important is that I may finally get the medication and/or tools I need to fight this thing! I hate it. It’s taken my self-esteem. Confidence shot. Caused weight gain. Caused me to hate my own face. Caused a lack of intimacy with my husband because I don’t want him to touch me – especially my face. And it might even be causing my seizures.
I am trying hard not to get my hopes up too high. It’s been over a decade that I have been suffering in silence. I know there is no magic pill. But I pray that something we try will work for me. I have been doing a lot of research and found that people seem to have even better results (and way less side effects or NO side effects) with Hyponidd than with Metformin. Hyponidd is a natural herbal medication. I ordered some tonight and I hope that it will come in time for me to take it in to show my doctor at my appointment. He likes to go the natural route on alot of things so I think he will want me to give it a try.
I am so excited about this upcoming appointment that I am having trouble focusing on other things. I picture myself thin and healthy with no facial hair growth and no seizures. I picture myself happy in my own skin, finally…
Want to connect with me? My name is naturalsoapgirl on the SoulCysters Message Board.