Weight gain. Acne. Greasy skin. Hair loss. Mood swings. Blood sugar issues. Irregular/infrequent periods. Decidedly unfeminine hair in embarrassing places. And let’s not forget the big one – INFERTILITY. There’s no doubt about it: PCOS sucks.
For some women, getting an accurate diagnosis is yet another burden of the condition. If an ultrasound shows the tell-tale “string of pearls,” then without any further investigation a patient is diagnosed and treatment can begin. Sounds pretty straightforward, right? Not in every case. I have all of the symptoms of PCOS but no cysts. No pearls on the many ultrasounds performed while I traveled the difficult road of fertility treatments. Officially I’m considered “unexplained,” but the more I networked with other infertile women and read on my own, the more I realized that in every way but one I fit the profile of a PCOS patient.
So I asked my GYNO about it. His face went blank. “No,” he said. “You don’t have the string of pearls, therefore you don’t have PCOS.” And he’s the doctor who went to medical school and has practiced for more than 20 years. So he should know, right?
Not necessarily. According to Connections: An Educational Resource of Women’s International Pharmacy, “[t]he name “polycystic ovary syndrome” is misleading because you can have PCOS with or without ovarian cysts and, if you do have ovarian cysts, it does not necessarily mean that you have PCOS.” (1)
The staff at www.patient.co.uk seems to agree: “[I]t is possible to have polycystic ovaries without the typical symptoms that are in the syndrome. It is also possible to have PCOS without multiple cysts in the ovary.” (2)
The same info as provided by GPs to patients during consultations, health/disease leaflets, patient support orgs, all about medicines, book GP appts online, interactive patient experience forum. But unfortunately for patients, there’s disagreement within the medical community. The experts aren’t even sure that PCOS is the proper term for the condition. Medical News Today elaborates: “[T]he PCOS Foundation refers to PCOS as the "Silent Killer" because it cannot be diagnosed with one simple test and many women are undiagnosed. Signs and symptoms vary from patient to patient.
“In January, 2013, the National Institutes of Health convened an independent panel to determine whether polycystic ovary syndrome is the right name for the common hormone disorder. The experts concluded that the current name, which focuses on a [single] criterion - ovarian cysts - causes confusion and is a barrier to research progress and effective patient care. [Emphasis added.]" Dr. Robert A. Rizza, panel member and professor of medicine at the Mayo Clinic in Rochester, Minnesota, said "The name PCOS is a distraction that impedes progress. It is time to assign a name that reflects the complex interactions that characterize the syndrome. The right name will enhance recognition of this issue and assist in expanding research support." (3)
I found no mention to suggestions of what the ‘right’ name might be for this disorder. I’ve got some suggestions – none of which are medical in nature or profanity-free – but would be happy to submit them for consideration. You know, just to be doing something.
If you are like me and have struggled to get a proper diagnosis and adequate medical care, here are a few things that you can recommend your doctor have checked. This list at the rest of the article can be found at Medical News Today (link available at the bottom of this post).
- High testosterone - although females produce small amounts of testosterone, it is a "male" hormone.
- High luteinizing hormone (LH) - LH stimulates ovulation, but if levels are excessively high, the proper functioning of the ovaries may be disrupted.
- Low SHBG (sex hormone binding globulin) levels - SHBG helps reduce the effects of testosterone.
- High prolactin levels - prolactin stimulates the production of milk in the breast glands in pregnancy. High prolactin is present only in some patients with PCOS.
So, given all this confusion among the professionals, what’s a girl to do? Take responsibility for your own health. Trust that while your doctor has more training and experience in the field, there is no one on Earth who has more experience with you than you do. Living inside your skin every day counts for something, and whether practitioners of Western medicine want to admit it or not, you know more about your body on a deeply intuitive level than any professional ever could. If your doctor dismisses your concerns or is less than utterly thorough, get a second opinion. Get a third, if necessary, and don’t give up until you find someone who listens to you, does a thorough, thoughtful investigation, and figures out what’s wrong. Whatever the issue is, you can rest assured that if it’s anything like PCOS, you’re going to feel rotten and your quality of life will suffer until you have an accurate diagnosis and an appropriate treatment plan for your situation. And you deserve at least that much. So get on it!
- Anonni Mousey, 3.5 years undiagnosed
Sources:
1: https://www.womensinternational.com/connections/pcos.html
2: http://www.patient.co.uk/health/polycystic-ovary-syndrome-leaflet