8 posts tagged “women’s health”

Age-by-age guide to navigating reproductive health with lupus

Posted June 19th, 2018 by

Lupus can affect your reproductive health in a variety of ways throughout your life and can raise the risks of complications during pregnancy. Thanks to medical advances, the chances of having a safe pregnancy have improved — the key is careful planning.

Check out this timeline of gynecological and reproductive health considerations when you have lupus, plus pointers if you’re considering getting pregnant.

Teens

Puberty and childhood treatments – The stress that lupus causes to your body can delay puberty (join PatientsLikeMe and log in to see our recent forum discussion on lupus and period problems). If you had lupus earlier on in life, you may want to ask your doctor about how different treatments you’ve had could affect your reproductive possibilities. Teens and young women should also talk with their doctor about contraception for those with lupus (more on that below), especially because some lupus treatments can harm a fetus.

HPV vaccine and cervical cancer prevention – The Centers for Disease Control and Prevention (CDC) recommends that all girls get the human papillomavirus (HPV) vaccine when they are 11 or 12 years old to protect them against cervical cancer. The vaccine is considered safe for people with a suppressed immune system, according to Lupus.org. But it’s recommended that people with lupus get vaccinated while on a lower dose of steroids for a better vaccine response.

20s and 30s

Pap tests – Although general guidelines call for women (ages 21 to 65) to have a pap smear every three years, women with lupus should have a gynecology exam with a pap test annually. This is because lupus meds can cause you to be immunocompromised, increasing the risk for abnormal paps and possibly cervical cancer down the road.

Contraception – If you have lupus, using contraception can help prevent unplanned pregnancy, but it’s important to talk with doctor about the right form of birth control for you and your case of lupus. For example, if you have antiphospholipid antibodies, which increase the risk of blood clots, you might need to avoid certain kinds of birth control pills. Some women choose a long-acting contraception device like an IUD.

Planning for pregnancy – We know much more now about how to manage lupus to achieve a healthy pregnancy than we did decades ago. Consider these pointers:

  • Think ahead and try to avoid getting pregnant during a lupus flare-up. Women who become pregnant in remission generally have better outcomes.
  • Talk with a rheumatologist and maternal-fetal medicine specialist at least three to six months before you plan to get pregnant so they can help you adjust or switch your medications to protect a developing baby, and to monitor you every step of the way—including post-pregnancy, during breastfeeding.
  • Consider the possible complications and risks, but keep in mind that many women with lupus are able to get pregnant and deliver healthy babies. MotherToBaby.org says that lupus increases the chances of complications like infections, high blood pressure, and serious conditions like preeclampsia and HELLP Syndrome. Having other health issues including lupus nephritis or kidney disease, high blood pressure, high antibody counts or blood clots could increase the risks.
  • Choose a hospital with a NICU just in case. Lupus can raise chances of miscarriage or early delivery, as well as infant health problems. Read more about lupus, pregnancy and newborn health here. If you’re feeling anxious about your health or your unborn child’s, explore stories of women with lupus who’ve had babies (like one woman recently featured in SELF magazine) to learn about their experiences.

Finding support for fertility issues – There are many ways to build a family. You are not alone. You may find comfort and wisdom talking with other women, such as at Resolve, an infertility site with links to local groups, or PatientsLikeMe members who’ve dealt with fertility issues (see “On PatientsLikeMe” below).

40s, 50s and beyond

Bone health – Taking corticosteroids can affect your bone strength, so remind your doctor to keep tabs on your bone density. Regular, weight-bearing exercise can help you strong. Your doctor may recommend extra vitamin D and calcium supplements.

Menopause – Lupus can cause early menopause (which can also affect your bones). “The good news for women in their 50s is that menopause may lead to a decrease in some lupus activity, although some studies have disputed this,” according to Lupus.org. “As women with lupus move through their 40s and 50s and beyond they need to be sure to get regular mammograms and Pap tests, especially if they have had long-term treatment with immunosuppressive agents.”

On PatientsLikeMe

Members have shared about their experiences with pregnancy and women’s health issues — join the community and sign in see what others with lupus have said about:

Any questions or anything to add based on your experiences? Add a comment here or in this forum discussion.

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Is there a medical gender gap? The not-so-brief history of sexism in medicine

Posted March 27th, 2018 by

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today.

History of “hysteria”

Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues.

  • An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body.
  • The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved.
  • In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women.
  • During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.”

In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the concept still lingered in broader culture, according to the British Science Museum.

Present day sexism

Writer Maya Dusenbery, who has rheumatoid arthritis, makes the case that sexism still haunts modern medicine in a new book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Here are some key stats and dates she cites:

  • Three-quarters of the estimated 50 million Americans with autoimmune diseases are women; patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search (see our recent report on the diagnosis “lag time” for PatientsLikeMe members with various conditions)
  • Researchers understand far less about women’s biology because of a scientific gender gap. Up until 1993, the National Institutes of Health wasn’t required to track how many women were included in the research it funded with federal taxpayer dollars. Women (particularly those of childbearing age) were often excluded from clinical trials because of “a paternalistic concern about the risks to them and their future offspring” and because “researchers found it easier to study only men” — and even research on animals used (cheaper) male mice.
  • In addition to the research gap, there’s also still a “trust gap” in medicine, Dusenbery says. “While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well,” she says, noting that other terms that have taken its place include: Briquet’s syndrome, somatization, conversion disorder, psychosomatic, psychogenic, and functional symptoms. About 70 percent of those with “medically unexplained symptoms” (today’s popular phrase that often implies “somatized emotional distress”) are women.

Some patients are raising their voices about these gaps. Documentary filmmaker Jennifer Brea, who has chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), addresses the trust gap in her recent film Unrest and her TED Talk, “What happens when you have a disease doctors can’t diagnose.” And some conditions that are far more common among female patients, such as lupus, are finally getting more attention from researchers.

But Dusenbery wonders how many countless women have fallen through the cracks of these gaps in the system. “The harm done by medicine’s gender bias is difficult to quantify but staggering to consider.”

Have you experienced gender bias in your medical treatment? Join PatientsLikeMe today to connect with 392,150 women living with health conditions.

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