“I woke up in the middle of the night—I thought a monster was going to crawl out of my stomach,” explains Asha Brown, founder of WeAreDiabetes.org and diagnosed with type 1 diabetes at age 5. She was 15 years old when PCOS (polycystic ovarian syndrome) began torturing her body. “The pain got worse and worse. I started rolling around in my bed, crying and screaming because the pain was so intense.”
“And then, all of a sudden, something just ‘deflated.’ I almost passed out when it happened. I later learned that that was my first ‘cyst rupture.’ The beginning of my PCOS.”
Mindy Bartelson, Program Assistant at College Diabetes Network and diagnosed with type 1 diabetes at 7 years old, likely developed PCOS before she’d even begun menstruating.
“Problems with my period started with my very first period. It was so painful, I fell to the ground and I was quickly hospitalized. My blood sugar would spike to over 400 mg/dL, and my periods would last anywhere from two days to weeks long. Sometimes I’d get my period every two weeks and sometimes I wouldn’t have a period for several months in a row.”
By the time Mindy was in high school, she was being hospitalized every time she menstruated.
Diagnosing PCOS: Speak-Up & Ask For a New Doctor If Your Voice Isn’t Being Heard
PCOS or polycystic ovarian syndrome is the most common endocrine or hormonal disorder in women of reproductive age, explains Dr. Andrea Chisholm, a Board Certified Obstetrician and Gynecologist with over 17 years of clinical experience.
“Although the exact cause of PCOS is not known, there is some thought that it might have a genetic component. Some researchers also suggest it might be an autoimmune disorder or the result of environmental toxin exposure. Whatever the exact cause, it is recognized that insulin resistance is central to the development of PCOS. When the body becomes more and more resistant to insulin the body tries harder to produce more insulin. It is believed that the increased amounts of insulin cause the body to make more androgens.”
Androgens are usually thought of as “male hormones” explains Chisholm, because testosterone is an androgen hormone, but androgens are produced by the ovaries and are critical to female health because they are also converted to estrogen. Every female body needs normal amounts of androgen hormones for the development of bone, muscle, and overall sexual health.
Problems arise when androgen hormones are produced at an excessive level. This hormonal imbalance can affect a woman’s appearance, her ability to ovulate and menstruate normally, and her metabolism.
The most common signs and symptoms of PCOS generally include:
- Painful menstruation
- Increased body hair growth
- Increased facial hair growth
- Unexplainable weight-gain
- Irregular and missed periods
- Hair loss along the middle part (least common)
Despite her incredibly painful periods, Asha’s diagnosis didn’t come easily because she hadn’t experienced excessive weight-gain or facial hair growth—likely due to her Hashimoto’s disease that causes hair-loss, compensating for the facial hair growth.
“There is a huge under-addressed issue with type 1 diabetic women and OB-GYN health in general,” explains Asha. “We are a small, rare, little group of people but we do have considerably different needs and situations than even a woman with type 2 diabetes. PCOS is commonly associated with obesity, type 2 diabetes, and insulin resistance. I do have insulin resistance and I attribute that to PCOS but I’m not obese.”
That’s where proper testing comes in, explains Chisholm.
Currently there are two widely accepted criteria that require the presence of at least two of the following:
- signs of androgen excess
- decreased ovulation which causes menstrual irregularities
- polycystic ovaries
Both criteria state that other causes of androgen excess be excluded. Part of the diagnosis is clinical and can be made from a physical exam. An ultrasound may also be considered to visually detect the cysts. While most women will have small cysts that come and go unnoticed, women with PCOS have cysts that simply don’t go away on their own and eventually rupture, which is very painful.
If symptoms of PCOS present, recommended blood tests include:
- tests to check your androgen levels
- tests to rule out other hormone imbalances: TSH (thyroid dysfunction) and Prolactin (hyper-prolactinemia)
- tests to rule out adrenal problems: 17 hydroxyprogesterone (non- classical congenital adrenal hyperplasia)
- consider testing for Cushing syndrome
Unfortunately, Mindy wasn’t properly diagnosed with PCOS until nearly 10 years later due to poor health insurance coverage and a lack of awareness in the doctors she did see.
“Everybody just said, “Oh, it’s just because she has diabetes, that’s why her periods are so irregular. Finding an OB-GYN who would see me was hard because I was still so young,” explains Mindy. Eventually, because her blood sugar had become so erratic and unmanageable, her endocrinologist convinced an OB-GYN to accept her as a patient.
Treating PCOS: Why You Must Be Your Own Advocate
The most common treatment for women with PCOS is birth control because it regulates menstruation and overall hormone production, and thus reduces the development of the cysts. But simply putting a woman with type 1 diabetes and PCOS on any birth control method isn’t the answer.
Today, research and even online coverage of PCOS and type 1 diabetes is sparse, leaving type 1 women to fight through an often tumultuous journey in pursuit of a treatment method that provides them with enough stability to continue their day-to-day life.
Asha’s Treatment Story: “I have been on continuous birth control for a number of years and I have no period—if I go off my birth control, cysts develop and rupture and I become incredibly weak and ill from the extreme blood loss. It was happening every month. When I finally asked my doctor about continuous birth control, she said, ‘Oh, sure.’ It had never occurred to her to treat me that way before.”
Asha was no longer experiencing monthly cyst ruptures and her A1C inevitably improved.
“It changed my life.”
But then Asha’s doctor insisted she take a break from the continuous aspect of her birth control so her body could experience an occasional menstrual cycle to shed its uterine lining as it was originally designed to.
Already certain she was never going to pursue pregnancy, Asha questioned this recommendation: “I don’t ever want to have children and you don’t develop a uterine lining if you’re on continuous birth control, so there isn’t anything to shed.”
But her doctor insisted, so she listened.
“The flood-gates of hell opened. And I started bleeding—heavily and with incredibly pain. After three days of it, I started taking the birth control again but it didn’t matter, I just kept bleeding. I was losing so much blood that I started fainting and my husband would find me clinging to furniture because I was so nauseas and weak.”
Her doctor dismissed the severity of the bleeding and assured her it would stop would eventually. After nearly 6 months of continuous bleeding, her doctor began testing her for a variety of other conditions to explain the fainting and nausea, sending Asha to a half-dozen specialists.
“They all looked at me and said the same thing: ‘I think it’s because you’ve been having your period for 6 straight months.’”
But her doctor kept increasing her hormone medications, hoping to dam the flood. At one point she even suggested Asha take double the amount of oral birth control medication every day, also while injecting her with depo provera—a progesterone based birth control that is delivered every 3 months via injection.
Asha finally left her doctor—and found a new doctor who could look at the bigger picture, especially when it came to acknowledging that type 1 women are going to be more sensitive to hormones and changes in medications. The first thing he did was take her off the dangerously toxic amount of hormones her previous doctor had prescribed, and then he performed a D&C (dilation and curettage) in which the lining of the uterus is scraped clean, causing the non-stop bleeding to finally cease. This also caused her insulin resistance to thankfully let-up, dropping her insulin needs by half that first week all while keeping her blood sugar effortlessly under 120 mg/dL. Evidence of just how sensitive the type 1 female body is to excess hormones.
And then he prescribed her a very low-dose continuous birth control—the lowest dose on the market. And he insisted that there is no reason she needs to ever stop taking her birth control—it is the treatment method that manages her PCOS and it’s vital to her wellbeing.
Mindy’s Treatment Story: For Mindy, getting on birth control as a teenager was out of the question because of the southern, small-town mentality where she was raised, it was assumed that if you put a young girl on birth control, she’ll start having sex.
“I had no sex education. The only education was ‘Don’t have sex,’ so my condition went untreated.”
By the time she reached college, she was able to start a traditional form of oral birth control—in which you still have monthly periods—and while it made a big difference, she was still experiencing very painful symptoms.
“It was the most painful period I’d ever experienced, and it lasted for two straight weeks,” explains Mindy.
Not long after, she met Asha online. And quickly found a new OB-GYN who would not only listen but would also put her on continuous birth control just this past August 2016.
“I’m gradually feeling better, but my iron is still low from so much blood loss. My skin is clearing up, though, and I’m finally able to start exercising a little bit, too. My A1C is in the 6s and my blood sugars are so much easier to manage now.”
What both Asha and Mindy would truly like for their long-term treatment of this condition is a hysterectomy, but such an irreversible surgery is something no OB-GYN wants to perform on someone so young.
“Maybe in your 40s, that’s what they say,” explains Mindy. “Well, that’s convenient because that when I’ll be past childbearing age and won’t even need it anymore.”
Asha’s OB-GYN is more supportive of the idea.
“He said, when this approach stops working, we’ll talk about a hysterectomy,” explains Asha, relieved that she found a doctor who understands how life-changing this surgery would be, and trusts her own knowledge of her decision to not want to become pregnant.
“I would keep my ovaries because without the uterus I would still make some of my own hormones, which is good for my body, but I wouldn’t continue to produce cysts and there would be no bleeding,” explains Asha. “For a normal person, the recovery process is 6 weeks for a hysterectomy. I’m still recovering from so much blood-loss that my body couldn’t handle that right now. By the time I’m 36, I will do it.”
Read more about PCOS in women with type 1 diabetes in these blogs:
- When Diabetes & PCOS Collide
- PCOS Raises Many Questions for Diabetic Women
- PCOS & Diabetes: Why Not Talk About It?
- Endometriosis & Diabetes
Mindy’s Personal Blog on PCOS & Type 1 Diabetes
- Diabetes Burnout (& PCOS): We Meet Again
- Another Journey Begins: PCOS & Diabetes
- Dear Mother Nature, I’d Like to Return Your “Gifts”
I think I’m in the same boat but I’m not sure and I haven’t mustered up the courage to get tested yet. Let’s just say that diabetes care and knowledge aren’t most doctors’ forte around here, even for specialists. I’m also 100% sure I don’t want kids, much like Asha, and that’s not well received, either.