Ask Nurse Lynn: Estrogen and Progesterone


Female, 21, Deletion

My daughter with PWS (deletion) is wondering how common it is for females to be told by an endocrinologist to take estrogen and progesterone for the rest of their lives. She has already developed a blood clot (now resolved) and was told by another doctor that hormonal therapy could be a contributing factor. She is also concerned that it could lead to cancer if she takes it for life. Finally, is it common for people with PWS to also have Turners syndrome? Our daughter has swollen varices in her colon that occasionally bleed–a condition that can be common in Turners syndrome. Please advise!

Nurse Lynn’s Response:

Thank you for your questions. I have asked one of our experts for their input.

Most physicians will say estrogen and progesterone is for life for women with PWS. However, this should be discussed with your physician as he/she would know more about family history, risk factors etc.

The physician is correct about estrogen and progesterone being pro-clotting medications. I would strongly advise to do a risk/benefit analysis seeing that she has already had a blood clot before continued/prolonged use.

No significant risk of cancers from doing this with current formulations of hormones, per OB/Gyn .

It would be highly unusual to have Turner and PWS. There are many individuals with PWS and other genetic conditions. I would ask the geneticist to review the findings.

Varices are also common in PWS due to chronic constipation and straining. I would continue to monitor her BM’s daily and adjust medications as needed.

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