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Are you living with lupus (SLE) and experiencing problems with your monthly period? (Like, not getting it. Or having a really heavy, long period.) And have you ever wondered how lupus might play a role in this? Read on.

What does the research show?

Small studies have found that people with SLE are at greater risk of menstrual irregularities compared to the general/healthy population. The greatest type of irregularity appears to be sustained amenorrhoea (long-term absence of a period). Some people with SLE experience premature menopause.

These factors may increase the risk of period irregularities:

• Being age 30+
• Being on cyclophosphamide therapy (a chemotherapy drug)
• Taking immunosupressants (see a list of immunosupressive medications used to treat lupus)

Young people (17 and under) with juvenile SLE also experience period irregularity and hormone abnormalities, research has shown.

If you’re not getting your period (at any age), tell your doctor and ask how your lupus, treatments and other factors (such as menopause or any other health conditions you may have, like polycystic ovary syndrome) could be affecting “Aunt Flo.”

If you are getting a heavy or prolonged period, it’s also important to talk with your doctor and get checked for anemia, which is already a common problem in people with lupus.

Some women find it helpful to track their period (or lack thereof) on paper or in an app (like one of these) so you can keep close tabs on your cycle.

Period talk on PatientsLikeMe

In our community forums, no issue is taboo. Join PatientsLikeMe or log in to access the following links. Some members have asked about lupus and periods in the forums, including whether some medications may cause irregular or stopped periods and how to manage heavy periods and flares during menstruation.

“I realized that menstruation can cause your body to really go bananas with your lupus,” one member says.

Members have also discussed the related topics of lupus and pregnancy, pelvic pain and menopause.

Any period issues (or helpful hints) you’d like to discuss? Sign in to connect with the lupus community (36K+ members) and talk about this topic or any other aspect of life with SLE.

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break!

(Check out more of Jeanette’s story and perspective on parenting with lupus.)

What are some activities you did with your kids when you were fatigued or weren’t feeling well?

When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them.

If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing.

Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.)

And what kinds of activities did you and your family enjoy when you were feeling well?

When I was feeling good, the sky was my limit. We were always out doing something. I would go watch them at sports practice, I would exercise with them, go rollerskating with them. Sometimes I would just watch.

We would go to a movie, we would bake together, walk around the block together and talk or just go get some ice cream.

My favorite was when I was feeling well, all my kids’ friends would come over to my house just to hang out with me and tell me stories. I’d take it all in and pay attention to sometimes 10 stories at a time. I miss those days. Sometimes we even had sleepovers so the kids could spend more time with me. Ours was the house to be at because I always listened to each one of them and gave them advice.

What else would you say to people with lupus who feel it’s limiting them and their family?

Just because you’re feeling horrible, you don’t always have to seclude yourself. Try to stay moving because it helps your muscles, bones and brain.

While you’re feeling well, you don’t always have to use that energy to clean — use it to enjoy your kids. The mess will still be there, but the kids grow up and move out. You want those memories of the time you spent with them, not the clean house where you couldn’t do anything in it.

Enjoy every moment you have, and push through the rough days as the good days are right behind them.

What kinds of activities do you enjoy with your kids or grandkids despite your chronic condition? Join PatientsLikeMe or log in to connect with thousands of members living with lupus or other health conditions and swap ideas about parenting and family relationships.