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What You Can't See About Living With Polycystic Ovarian Syndrome

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Izzy Judd, Victoria Beckham and Jools Oliver are often written about in the media. One thing these three celebrities reportedly have in common is polycystic ovarian syndrome (PCOS).

“Do you have trouble getting pregnant, have adult acne, is your hair falling out, and do you have irregular periods, weight gain or excessive hair growth?”

These are things people look for when seeking a PCOS diagnosis; however, many people don’t truly understand what this diagnosis means. A few of my relatives and friends are aware of my PCOS, but the details of this condition remain a secret. In no way am I saying that PCOS is worse than any other condition out there, but it takes its toll not only physically but mentally. It is life-changing in its own right.

Nobody sees my daily struggle with this condition that has plagued me for almost 10 years. Nobody watches me as I shave my face daily, inspecting for new dark hairs, ingrown hairs or scars, wishing that I was somebody else and that this condition would end. Because let’s face it, many of us hate something about ourselves and we all strive for perfection.

To the people I have worked with in the past: You have seen my “poker face” when I am trying to lift someone more than my weight up their stairs to get them home from the hospital, or grasped my stomach when doing patient observations, pretending I have lost my pen (again). It isn’t that I am unable to lift weight or that I am clumsy and lose my pen — secretly I am in agony with unovulated eggs and cysts in my ovaries, enduring daily pelvic pain that can come with this condition.

The hospital ultrasound technician who was looking for my appendix and ovaries during one hospital admission, who then thought they were clever claiming I had “too much adipose tissue to see anything,” obviously didn’t realize I understood fully what she meant and I held back my tears, avoiding any more embarrassment.

The doctor who told me I probably was pregnant but they weren’t sure because of the positive test on Friday and the heavy bleeding that followed prior to the appointment but it was “most likely I was pregnant.” How can you grieve for something so small that you didn’t know for sure existed in the first place.

Fertility doctors say I can’t have my IUI/IVF until my body mass index is 35/30 and that losing a couple of stone in six weeks “should be easy.” Are you kidding me! Yes, it shouldn’t be that difficult, but when you have insulin resistance and your body doesn’t like dieting, it make things more difficult. The fact that I have to practically starve myself because the diets aren’t working (and this is not an excuse — I do my best and have been very successful so far) but it is never good enough for medical staff. Each day (not recommended) I stand on my scales hoping that the numbers have gone down. The same goes for my measuring each week.

Throughout my weight battle, it can only go down from here… and it has! At the age of 24 I have had to endure appointments, exams, scans, swabs and tests, not to mention seeing several different doctors — half of which involve me being half naked suspended in front of a doctor. I haven’t had a period for at least nine months and now have to endure more medication to bring one on, adding to the tablets that are about an inch long that I currently  take three times a day.

The sad truth about PCOS is that there is no known cause. A theory is that genetics play a role; however, this is not proven. The effects are not just physical but they take a huge toll on a person’s mental health.

Unfortunately PCOS can also cause other issues, gestational diabetes, premature delivery and miscarriages. Not to mention depression, anxiety, diabetes and sleep apnea. I scared my wife half to death once when I briefly stopped breathing during my sleep. Thankfully it only happened once and has not happened since.

PCOS is actually one of the most common hormonal endocrine disorders in women. The condition causes constant embarrassment, pain and fear. Fear that others will see the hairs on your face and comment about them or that the pain may finally mean that your colleagues are aware of the condition as your pain threshold gives in. Fear because you can hear others question why you are in the doctor’s office, why you are in the maternity ward surrounded by pregnant women when you have a fat stomach but are there to see the fertility specialist. What really annoys me is that they choose to give the patients with fertility issues appointments in the maternity department. Talk about rubbing it in your face!

Many have PCOS, but not enough share their true secrets and fears surrounding the condition.

Originally published: July 12, 2016
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