Ask Nurse Lynn: Mentsruation and Hormone Support


Female, 15, Deletion: 
Do you happen to know of any standard of care as far as hormone support or instigating a menstrual cycle in females with PWS? Is there any harm in waiting to initiate a cycle? I know a lot of women and girls with PWS never start their period without medical intervention, but many do start, just later than most. We’re getting a lot of pressure to get started with these things, but there are lots of indications that my girl may start at her cycle any time (hormone levels/physical development,) and I’d like to see that happen, if it is possible & not problematic.

Nurse Lynn’s Response

Hello, and thank you for your excellent question. I have consulted with a physician expert to help answer this question.

To start, here is a brief overview. We know that most PWS individuals have hypogonadism. Hypogonadism is the condition where the production of sex hormones (estrogen/testosterone) and germ cells (ova/sperm) are deficient. Most of our kids have incomplete development with low sex steroid levels, poor growth spurts, the absence of periods in girls, or infrequent/irregular periods.

In our girls, we can consider treatment with Hormone Replacement Therapy (HRT) if there is no breast development by the age of 12-13 years, if the development stops, or if there are no periods by the age of around 14.5 years. You can start with a low-dose estradiol patch and gradually increase, or there is also a pill form.

When girls have an incomplete progression of puberty, their height growth slows. Estrogen replacement can support height growth if the growth plates remain open.

When we reach a maintenance dose with the Estradiol patch, you can add a cyclic micronized progesterone (Prometrium) for ten days every 3-4 months. The alternative would be oral contraceptive pills with a placebo every 3rd pack, ease of use.

We should consider “normal timing” to individualize the plan based on their tolerance level and understanding of how it affects their mood and quality of life.

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