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.

Share this post on Twitter and help spread the word.


Parenting with bipolar II: Alysia’s story

Posted June 15th, 2018 by

Meet Alysia, a member of the 2018 PatientsLikeMe Team of Advisors who’s living with bipolar II disorder. Here’s what she had to say about parenting with a mental health condition, learning to adapt and how she “defies the odds.”

When I was younger I wrote stories about my alter ego who had kids. I lived almost vicariously through this alter, figuring I would never be a parent myself — that I was too damaged to be loved, much less be a parent. The resounding thud ending my hopes came when I was 20 and diagnosed primarily with bipolar II disorder, rapid cycling, during my first inpatient hospitalization. The relief of knowing what was going on with me was mixed with the fear and a sense of “no one is going to want to deal with this enough to love me.” I was wrong — I have an 11 ½ year old stepdaughter and a 3 ½ year old daughter.

To some extent they know that mom is “sick” and it doesn’t ever fully go away. It causes me to feel like I am not worthy of having kids or that they would be better off with anyone else as their mom. I worry constantly about the emotional damage I may be causing them because of my bipolar symptoms. That worry and my desire to do better for them, and myself, is a huge driving force to regain and maintain my stability.

When my husband and I were planning our family, I told him that:

“If our kid was like me, she would be in a great place full of love and understanding. Her family will know the battles they are about to face and how to face them.”

We will be as ready as we can be to help her. As a parent, that is all we can do — be there to help them through all of life — from learning to roll over, to walking, to homework, to heartbreaks and celebrations. Having a mental illness does not fully stop me from being there for them. I may not be as present and involved as I want, but I’m working on it, and the best part of kids is that they love you without hesitation.

My daughter is three, and she can be handful with her “three-nager” attitude that truly makes me fear puberty with her. She is also so incredibly compassionate, smart, funny, creative and loving that I’m in awe of her constantly. My stepdaughter is entering puberty and all of those joys and frustrations, but she is also: vibrant, headstrong, dynamic and an ever-evolving young woman. No matter what we face in the future, we are going to succeed because we are a family.

You can be an amazing parent with any type of illness; it does not define or exclude you from that. Every family has its own challenges and learning how to adapt and overcome your obstacles is vital to success.

Can you relate to Alysia’s story? Join PatientsLikeMe and connect with the 14,000+ members living with bipolar disorder.

 

Share this post on Twitter and help spread the word.