Confessions about living with PCOS to remind you that you're not alone

Polycystic ovarian syndrome as nearly unheard of just a few decades ago, so much so that many doctors thought women were imagining their symptoms. But not only is the illness very real, it has very real (and devastating) consequences.

No one is sure why, but rates of polycystic ovarian syndrome (PCOS) have exploded recently, says Renée Volny Darko, M.D., a board-certified OB-GYN practicing in Pennsylvania. Not only is PCOS the most common hormonal endocrine disorder in women, affecting 5 to 10 percent of us, but it is also responsible for up to 70 percent of infertilities.

The syndrome is characterized by small cysts that grow on the ovaries (hence the name) and excess testosterone. Even though it's typically thought of as the "male hormone," all women do naturally have some testosterone. But in PCOS these levels inexplicably skyrocket, preventing the ovaries from releasing eggs and causing symptoms like male-patterned baldness, acne and excess facial hair. Other symptoms include insulin resistance, weight gain and the inability to lose weight, infertility and serious disruption of the menstrual cycle.

Ironically, the things that help PCOS the most — diet, exercise and moderate weight loss — are the exact things that the illness makes so difficult, trapping many women in what feels like nature's cruelest catch-22. So, while doctors are learning more and more about this illness, women are left trying treatment after treatment, hoping to find their personal cure and dealing with the fallout however they can. Recently the app Whisper polled their female users about their PCOS "secrets" and what they found shows how dire the situation is (and why we desperately need more funding to study it).

Here are the anonymous confessions of women living with PCOS every day:

1. Sex life? What sex life? "I have PCOS, which comes with embarrassing body hair. I don't know if I'll ever feel comfortable enough to have sex with someone."

2. You worry all the time about stuff other young women don't even have to think about. "I haven't visited my doctor in 2 years for fear that my condition has worsened and they'll have to remove my ovaries, leaving me barren forever."

3. The uncertainty is terrifying. "I'm scared I'll never be able to have that child or that relationship because I'm not 'normal.'"

4. It makes you question your femininity. "I'm so tired of having PCOS. It messes with my weight, feelings, makes me unable to have a child and, worst of all, makes me feel like less of a woman."

5. People who "slip up" or "accidentally" get pregnant are triggers. "Every time someone tells me they're pregnant I get depressed."

6. It changes your entire life plan. "I found out I have PCOS and have been trying to convince myself that I don't want kids and a family ever since."

7. Weight gain is super easy and weight loss is nearly impossible. "I hate being the fat friend. I have PCOS and a hormonal imbalance so when I try to lose weight I can't lose much. The most I've ever lost is 15 pounds."

9. It makes you hate the very thing you're trying to protect and love: Your body. "I hate not being able to lose weight. I hate irregular periods. I hate body/facial hair. I want a different body."

10. It affects your relationships. "I am worried I will disappoint my fiance if it won't allow me to get pregnant. I hope he won't leave me."

11. You never thought you'd say this but... you miss your period. "A few years ago I wished I didn't have a period. Now I have PCOS, no period and am trying to conceive. I miss my period."

12. Where other girls flaunt their bodies, you feel like you have to hide yours. "I have hair all over so I hide my body. It makes life hard for a girl."

13. Periods are even more of an inconvenience than they already are. "When I get my period — if ever — it feels like I got hit with a truck."

Article is from : http://www.sheknows.com/health-and-wellness/articles/1122917/living-with-pcos

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A gut check for PCOS-related obesity

Modifying gut bacteria could be a treatment option for some of the symptoms associated with the widespread disease polycystic ovary syndrome (PCOS), according to a recent study by San Diego State University researchers in collaboration with investigators from the University of California, San Diego. The study found that changes in gut bacteria are strongly associated with obesity and signs of diabetes in a mouse model that mimics PCOS.

PCOS affects approximately 10 percent of women worldwide, said SDSU biologist Scott Kelley, the study's lead author. PCOS is typically diagnosed in women that have increased levels of testosterone, menstrual cycle irregularity and cysts on the ovaries. In addition to a high incidence of infertility, women with PCOS have an increased risk of developing type-2 diabetes and heart disease.

Scientists have long known that gut bacteria aid in food digestion, make important vitamins and stimulate the immune system. Over the last decade, scientists have also discovered that people with obesity or diabetes have different bacteria in their guts than healthy people.

"What you see when you look at obesity," Kelley explained, "is large changes in specific groups of microorganisms that are involved in breaking down dietary fiber and regulating metabolism. We wondered if women with PCOS also have the same types of changes in their gut bacteria."

Testosterone boost

To answer this question in a controlled experiment, Kelley and his collaborator at UC San Diego, Varykina Thackray, turned to a mouse model of PCOS that is induced by giving mice the drug letrozole. This drug, which is used to treat certain types of breast cancer, blocks the conversion of testosterone into estrogen and results in a condition known as hyperandrogenism. About 80 percent of women with PCOS have hyperandrogenism.

SDSU researcher Scott Kelley talks about what inspired this research. Credit: SDSU

"When you treat female mice with letrozole, you get similar symptoms to what you see in women with PCOS," Kelley said.

Half of the mice in the study were given letrozole and the other half received placebo. Both groups of mice ate the same diet. After five weeks, the letrozole group gained significantly more weight and were substantially fatter than the control group. They also had elevated blood glucose levels, which is associated with insulin resistance.

To look for changes in the gut bacteria, the researchers also collected fecal pellets from each mouse and analyzed the bacterial DNA in them. By comparing the fecal DNA to "barcodes" of known microbial DNA, Kelley was able to determine which gut bacteria were present in each mouse.

They found that the number of different bacterial species in the letrozole-treated mice was much smaller than in the control group. The results were published in January in the journal PLOS ONE.

Decreased diversity

"At first, things started out the same in the letrozole and control groups," Kelley said. "But rapidly, the gut bacterial communities as a whole diverged. In fact, the letrozole mice just stayed the same over the course of the study. The diversity of the gut bacteria didn't go up with age, whereas the control mice got more and more diverse over time."

The researchers also saw an increase in certain types of bacteria that have been shown to change in mouse models of obesity, as well as in human obesity, suggesting that changes in the gut bacteria could contribute to the metabolic dysfunction associated with PCOS, he added.

It's unclear, though, whether these changes in the gut bacteria after letrozole treatment were the result of the weight gain or the cause of it. Kelley and his collaborators are currently delving into this question and early results seem to indicate that the microbes themselves may be responsible for the obesity. If that's the case, it suggests that by altering the microbial communities in the gut through probiotic treatment or other means, researchers might be able to help control the metabolic disorders associated with PCOS.

"The good part about this study is that we can increase our understanding not only of women's health but also our biology in general and how we might control the gut microbiome," Kelley said.

Explore further: Letrozole may help women with PCOS become pregnant

More information: Scott T. Kelley et al. The Gut Microbiome Is Altered in a Letrozole-Induced Mouse Model of Polycystic Ovary Syndrome, PLOS ONE (2016). DOI: 10.1371/journal.pone.0146509 

Journal reference: PLoS ONE 

Provided by: San Diego State University 

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7 Subtle Signs You Could Have PCOS from Self Magazine

If you’ve skipped a period or two (and know you’re not pregnant) and have been breaking out like you’re a teenager again, it’s easy to chalk it all up to stress. But something more serious may be going on, such as polycystic ovary syndrome (PCOS), a stealth health issue caused by a hormonal imbalance and marked by a series of small cysts on the ovaries.

Five to 10 percent of women of childbearing age are affected by the condition, but less than half of women are diagnosed, according to the PCOS Foundation. That means millions of women have PCOS and don’t even know it. To shed some light on this silent disease, here are the most common not-so-obvious signs of the hormonal disorder. If you’re experiencing any of these symptoms, bring them up with your gynecologist or general practitioner and get them evaluated.

1. Your cycle is all over the place.

Unpredictable menstrual cycles or skipping several periods are one of the hallmarks of PCOS. “Our menstrual cycle is like a vital sign,” says Maryam Siddiqui, MD, assistant professor of obstetrics-gynecology at the University of Chicago Medicine. “It tells us if our metabolism is in a good state; if you’re too thin, overweight, or stressed, that can throw your cycles off. Having irregular periods or more likely, skipping multiple periods could be a sign of a hormonal imbalance like PCOS.” Menstrual irregularities like these should raise a red flag and warrant a doctor’s attention.

2. You’re growing hair in unexpected places.

With PCOS, the ovaries produce excessive amounts of a type of hormones called androgens, which stimulate hair growth. We’re not talking about the hairs on your head. “You’ll get hair growth in funny places—around the nipples, on your chest, the inside of your thighs, and your belly,” says Siddiqui. “Places were women don’t typically have a lot of hair growth.”

3. You’re breaking out.

Those same high levels of androgens also trigger acne. The hormones boost sebum production, and the combo of excess oil and old skin tissue plugs pores. To add insult to injury, bacteria that flourish on sebum increase, triggering inflammation.

4. There’s a dark “ring” around your neck.

You might blame it on a cheap necklace leaving a ring of residue on your skin at first, but PCOS can cause a stubborn darkening of the skin around the back of your neck. “It’s a velvety, dark discoloration that doesn’t wash off,” explains Siddiqui. The pigmentation and skin texture changes can also appear under your arms and around the vulva.

5. Your belly is getting bigger and you don’t know why.

Unexplained, persistent weight gain, particularly around the abdomen, is a sign of the hormonal disorder. Although it’s not fully understood why weight gain is a symptom, insulin resistance appears to play a role. “With PCOS, you can have trouble metabolizing blood sugar, known as insulin resistance,” explains Siddiqui. “When you have insulin resistance, your pancreas has to work really hard and make a lot of insulin just to lower your blood sugar. That is linked to weight gain and central obesity.” (Women with PCOS are at higher risk for developing diabetes.)

6. Those annoying skin tags keep popping up.

Although it’s not fully understood why, those flesh-colored nubs of excess skin tend to crop up around the neck area and under the arms of women with PCOS, according to the U.S. Department of Health and Human Services. It’s worth noting, though, that skin tags, which are benign and can be triggered by friction, are also common in people who don’t have PCOS, so don’t automatically freak out if you have them.

7. You’re having trouble getting pregnant.

The hormonal imbalance interferes with the body’s ability to ovulate normally, which is essential for pregnancy to occur. So it’s no surprise that PCOS is one of the most common causes of infertility. In fact, it’s responsible for 70 percent of infertility problems in women who have trouble ovulating, according to the PCOS Foundation.

Article from : http://www.self.com/wellness/2016/02/pcos-polycystic-ovary-syndrome-signs/

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Being Diagnosed With PCOS

Last month I was diagnosed with PCOS — Polycystic Ovary Syndrome.

It didn’t exactly come as a shock, but having the official diagnoses was still an emotional roller coaster. A few months ago I basically knew nothing about PCOS — and now after endless hours researching I’m less in the dark — though I know I have much more to learn. For those of you who do not know, PCOS is a hormonal imbalance disorder that can cause insulin resistance, Type 2 diabetes, high cholesterol, high blood pressure, heart disease, ovarian cysts, and infertility - among other less threatening side effects (source).

And while that whole list is overwhelming, it’s the infertility part that felt unbearable. I want to start a family more than anything. Being diagnosed with PCOS doesn’t necessarily mean I won’t be able to have a baby, but it does mean it’s going to be much harder if I am at all able. Harder to not only get pregnant, but keep a pregnancy.

After my diagnosis I debated back and forth about telling anyone — maybe if I didn’t talk about it I could pretend it wasn’t true. Putting it online for the world to read was the farthest from my mind at that point. But once I did start to open up about it a bit I realized the main reason I didn’t want to talk about it is because I felt like I wasn’t supposed to. Yes, I have parts of my life I hold close and don’t share, but this didn’t seem like it should be one of them.

Infertility is such a taboo topic, but it affects 1 in 8 couples. And while infertility is a taboo topic, apparently family planning is not. It hasn’t stopped countless people asking me: “Well when are you having a baby?” “Why haven’t you had kids yet?” “What are you two waiting for? Aren’t you even trying?” If those questions are still being asked then I shouldn’t feel like I need to hide this — especially when it is clearly going to be a big part of my life moving forward.

I plan on posting about my initial diagnosis, what our first steps are moving forward and about my journey in general on my blog at myurbanfamily.com/category/life-advice/pcos/. Please stop by and follow along, especially if you are going through a similar journey. PCOS, infertility, and family planning are topics we should be able to discuss and obstacles to overcome together.

If you have PCOS, words of advice, or have any questions I would love to hear from you! And if you have friends or family also going through a similar journey, please pass my story along so our journeys can be shared.

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Alexandra is a Chicago area blogger at www.myurbanfamily.com. Her writing includes life advice, random musings, and details about her family’s journey into urban life in Chicago. Make sure to follow along HERE for helpful and witty post updates.

She can also be found on the following social media platforms: Instagram, Twitter,Pinterest, Facebook, Bloglovin.

Follow Alexandra Starkovich on Twitter: www.twitter.com/myurbanfamily

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