Menstruation is a normal part of life, but it is often not discussed and even less so, researched. Try researching menstruation and PD and you will be shocked to find how little studies have been published! Research is lacking in most women specific symptoms related to PD. Some studies report 3-5% of women diagnosed with PD are under the age of 50, but it is suspected that many more are undiagnosed due to the varying clinical presentation and the different presentation between men and women. Even though this number may seem small, the issue they face regarding their menstrual cycle is not.
Impacts of menstruation
Studies have shown that 11 out of 12 pre-menopausal women with PD experience worse motor and non-motor symptoms both before and during their menstrual cycle. One survey reported 83% of women experienced worsening period symptoms after their young onset Parkinson's disease diagnosis. Many women with Parkinson's share that their medication is not as effective or does not work during their period. Many women report an increase in pain, fatigue, worsening of mental health, increase in tremor, dyskinesia, and rigidity. Other women experience changes in their body image; some feeling unattractive and some changing the way they dress.
What can you do to help
Change in Levodopa timing
Although this hasn't been heavily researched, some studies do show that taking an hourly dose of Levodopa when you have your period can help reduce motor fluctuations .
Hormone Replacement Therapy (HRT)
HRT is commonly used to help women with symptoms of menopause, but it is not limited to just those women! HRT helps increase your progesterone and/or estrogen levels. Estrogen levels tend to decrease during menstruation. HRT can keep your levels a bit more stable to help reduce a worsening of symptoms.
Birth control is not the same as HRT, but both are used to reduce any hormone fluctuations. The goal of birth control is to stop ovulation while HRT suppresses ovulation, so the dosage is much higher. High levels of estrogen does increase your risk of a blood clot and heart disease, so make sure you talk with your doctor about what type of hormone and how much is right for you.
If you are experiencing worsening of motor symptoms, changing pads, tampons, and cups can be really challenging. Try using period underwear instead! This elevates the frustration and difficulty with any fine motor tasks that are involved with your period.
Plan ahead, especially with your care partner
Keep track of your cycle and alter your responsibilities during PMS and during your period. Make sure you talk and plan with your care partner. Having extra help during your period may really make a difference in your mental stress and fatigue levels.
Keep a diary
Menstrual cycles can be impacted by many different aspects of our lives - diet, stress, sleep, exercise, etc. Keep track of what you are eating, how you are sleeping, and your activity level during your PMS and period. This can help determine if there are certain triggers that may exacerbate your symptoms or contribute to greater hormone fluctuations.
See a professional
A therapist or other mental health professional may be needed during menstruation to help handle those mental health changes.
Talk with your Gynecologist about your pelvic health and what treatment options are available to you. It may be hard to find a Gynecologist that is well informed about PD. Make sure your Gynecologist and Neurologist work as a team and are really willing to listen and take the time to find the right treatment for you.
The very limited research in women with PD makes this a hard topic to cover, and many health care professionals may feel like they are not equipped to help because there is not research. All too often, people with PD need to be their own advocate and fluctuations in symptoms that are linked to menstruations may be one of those times. Make sure you are talking about this with your doctor and make sure they listen. The more conversations we have, the more researchers will see a need to search for answers.