There has been a lot of information about this but nothing published. Here are a few posts on the subject, from an older discussion board. Please add comments to add to the body of knowledge.
This question was submitted to an older discussion board and the family would appreciate any information that is available:
My daughter has myotonic dystrophy and in the past nine months started to have terrible problems with her periods. For three weeks out of four she is in consistent pain and is very poorly with them. Do you think that this could be connected with MD being soft muscle or are we looking at something else as well. Any suggestions for treatment or medications. Any doctors that can help?
Women are uniquely affected by Myotonic Dystrophy. The congenital form of the disease is almost exclusively passed on by the mother. With the birth of a congenital infant the mother will need to care for the infant while she herself is affected with a slowly progressive disease. This disease manifests itself very insidiously. In a nutshell it sneaks up and takes away a lot of the parenting skills over time.
Additionally infants that are not congenital in nature may have the juvenile onset. This can cause issues with learning disability, social, emotional and other considerations. This will cause a lot of stress on the family and the mom who may be the primary caretaker.
Some issues that women need to consider
1. The need to consider reproduction via Pre-Implant diagnosis
2. The need to care for an infant with Juvenile or Congenital DM1
3. Increased Menstrual Pain or Bleeding