Type 1 Diabetes and Women’s Health

As if managing the literal ups and downs of life with type 1 diabetes (T1D) is not complex enough, women with type 1 diabetes (T1D) should be aware of additional health concerns that can sometimes coincide with the chronic illness. If you are a woman with type 1 diabetes, it is important to advocate for your own health and be aware of these conditions. If you are a healthcare provider, be sure to screen for the following conditions, some of which may be more common in their female patients with diabetes than they realize.

Polycystic Ovary Syndrome (PCOS)

PCOS is an often-debilitating condition in which a woman’s hormones (more specifically, androgens and insulin) become out of balance. It is typically accompanied by the growth of clusters of small cysts on the ovaries. PCOS is the most common endocrine disorder in women of reproductive age (premenopausal women), impacting 6-15 percent of these women (5).

PCOS can cause the following:

• irregular and painful menstrual cycles
• physical or cosmetic body changes (e.g., acne, increased facial and body hair, weight gain, thinning hair on the scalp)
• emotional burden
• infertility issues
• metabolic changes (such as insulin resistance)

PCOS also increases the risk of developing type 2 diabetes (T2D), gestational diabetes and heart disease (13). PCOS is likely caused by a combination of genetic, autoimmune and environmental exposure factors, though the exact cause is currently unknown.

Women with T1D have a significantly greater likelihood of developing PCOS than the general population, with nearly one in four women of childbearing age with T1D having PCOS and up to one-third having PCOS-related traits. Early diagnosis is key in controlling the symptoms of PCOS and preventing long-term complications. Unfortunately, doctors often overlook the increased risk of PCOS in women with T1D (5).

Like many women who endure both T1D and PCOS, Mindy Bartleson, didn’t understand why it took her so many years to be diagnosed with PCOS, despite suffering from the symptoms for over a decade.

“Why doesn’t anyone talk about this [PCOS and diabetes]?” says Mindy Bartleson. “Why have I grown up with scare tactics about taking care of myself to avoid complications, and am screened for thyroid disorders and celiac disease, but not PCOS, a related complication I am more likely to develop.” (4).

If you are a woman with T1D, ask your endocrinologist and/or gynecologist if PCOS is something you should be screened for. Screening may involve a physical exam, ultrasound and a blood test to check your hormone levels. PCOS is often treated with a combination of hormone replacement (such as birth control pills) and diabetes therapies (e.g. insulin sensitizers), regular exercise, a healthy diet and weight control (13). Be aware that excess hormones from birth control medications can cause further insulin resistance (12).

Read Asha Brown’s account of coping with PCOS among other autoimmune conditions.

Diabetic Mastopathy (DMP)

DMP is a rare breast disease occurring mainly in premenopausal women who have had type 1 diabetes for many years. It is less common in women or men with type 2 diabetes or thyroid disease. Due to the condition’s rarity, we learn about DMP mostly through case reports of individual patients, in whom is discovered “rocky, hard, painless, irregular mass[es] of the breast” that recurrently develop (6).

Based upon clinical and radiological examination, these masses can easily be misdiagnosed as breast cancer. It is therefore crucial that doctors obtain both an in-depth personal medical history from their patient and a core biopsy of the mass(es) to rule out cancer, rather than recommend their patients undergo repeated, invasive surgeries that may actually worsen DMP (6). DMP masses are almost always benign and have not been linked to later development of breast cancer, so routine follow-up care (close observation of the masses using mammography and ultrasound) is typically all that is required (10).

The prevalence of DMP is hard to determine because many young women with diabetes do not routinely have breast examinations. One study found that 7.5 percent of a sample of 120 women with type 1 diabetes had DMP, and the authors recommend that DMP should be screened for in all female patients with diabetes (8). The causes of DMP are still unclear, but likely involve an autoimmune component; therefore, it is recommended that women with T1D maintain good control of their blood glucose (BG) to avoid diabetic neuropathy and retinopathy—both of which have been linked with DMP (10).

Sexual concerns in women with T1D

Specific sexual complications that women with diabetes may face include increased risk of recurrent yeast infections, reduced levels of sexual drive and response and decreased vaginal lubrication—which can result in discomfort during sex.

If blood glucose (BG) levels are consistently high, women may experience nerve damage, reduced blood flow to the genitals and unwelcome hormonal changes (14). Preventative steps women with T1D can take to avoid some of these sexual problems are to keep their BG levels under control as much as possible, try Kegel exercises to strengthen the pelvic floor muscles and improve sexual response and incorporate vaginal lubricants during sex as needed.

In addition, women with diabetes who take birth control medications should be aware that these medications can raise BG levels or increase the risk of other health complications if taken long-term (11). Women should openly discuss the impact of T1D on their sexuality with their doctors. Conversely, doctors must educate their female patients about how T1D can affect their sex life.

Fertility issues

PCOS may contribute to infertility by causing a woman to stop ovulating or make it difficult to conceive due to irregular periods (13). Please see Beyond Type 1’s other resources for more information about T1D and infertility.

Pregnancy complications

Despite many medical advances, women with T1D are considered high risk when it comes to pregnancy, and tight control of BG is necessary to ensure both the mother and the child’s health. Research on expectant mothers with T1D shows that a variety of psychosocial issues are also commonly experienced, including “anxiety, diabetes-related distress, guilt, a sense of disconnectedness from health professionals, and a focus on medicalization of pregnancy rather than the positive transition to motherhood” (9). If you are contemplating pregnancy, research indicates that early diabetes education, pregnancy planning and preconception care from trusted health professionals, social support (especially from other women with diabetes) and shared decisions and responsibilities for diabetes management are important factors that increase the chances of a successful pregnancy and transition to motherhood—both physically and emotionally (7, 9).

Please see Beyond Type 1’s other resources for more information about T1D and pregnancy.

Menopause

During perimenopause (the transition years to menopause), changes in estrogen and other hormone levels can impact T1D by causing unpredictable fluctuations in BG levels. Women with diabetes also have a higher chance of premature menopause than women without diabetes, which can lead to a higher risk of heart disease (11).

The emotional toll

Managing diabetes can be overwhelming some days, and especially so for women who also manage other chronic health conditions. Peg Abernathy, a T1D advocate and contributor to Huffington Post states it well: “Trust me when I say that the emotional side of diabetes is a huge piece of the puzzle and if it is not taken into consideration, it can unravel all well laid diabetes plans.” (1).

Mindy validates this statement when describing her emotions following her recent PCOS diagnosis: “It’s also been a whirlwind of emotions. Honestly, probably what you expect out of new diagnoses. My emotions vary greatly. I go from appreciation that I finally have answers. To disappointment that there isn’t more research, screening, voices, or information out there. To frustration that I feel like being a patient means my experience doesn’t count for enough. To feeling grateful “me too’s” exist. To anger because I feel missed for so long. To general confusion. To annoyance that social norms influence this part of heath so much so it’s treated as ‘no big deal since it’s just a women’s issue.’ And finally to relief that the plan is for me to not have another period ever again” (2).

If you are having difficulty dealing with the daily struggles of having T1D and/or other chronic health conditions, or are feeling sad or depressed due to changes in your health, please find a doctor or therapist who empathizes with your feelings about your diagnoses and treatments. Also, share your feelings with another woman who understands your struggles. You are not alone. 

Bad-Ass Women with T1D: Empowered, intelligent, self-care savvy, equipped and ready to help out other women with T1D…these characteristics describe you! Celebrate the health-related successes in your life, no matter how small they might seem. If you stay within your target blood glucose range for a day, do a happy dance and start afresh the next day. If you find a gynecologist or endocrinologist who “gets you” and your health issues, cheer and never lose his or her contact info! Feel great that you are doing your best each day to manage everything you have to manage. Let your resilience and determination amaze and astound those around you!

To Sum it Up: The take-home message here is that women with T1D need to be their own advocates. Assemble a health team that you trust and don’t be afraid to ask your doctors whether you should be screened for any of these conditions. Learn as much as you can about your health so that you know the right questions to ask about your health plan. Take care of yourself, both physically and emotionally, and allow others into your life to help you take care of you. Keep up with your blood sugar control as much as possible, but don’t blame yourself if your efforts fail at times. Get help when it all seems too overwhelming. Live a healthy lifestyle—exercise regularly, eat a nutritious diet and feed your soul with whatever makes you tick. You are more than your diabetes and are not defined by any health condition!

 References

WRITTEN BY BT1 Editorial Team, POSTED 04/25/18, UPDATED 12/29/22

This piece was authored collaboratively by the Beyond Type 1 Editorial Team.