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
4. Pregnancy
This is an older article from 1998 describing the issues with 25 women with DM1 mainly discussing reproduction issues. This was before pre-implant diagnosis became available in the Western world. Now eggs can be fertilized outside the body, tested for DM and only the healthy eggs implanted into the woman.
Experience of 25 Women with DM1
Pregnancy:
Here is some information from a study that was just done in 2011. It states that women with DM who are pregnant need a lot of prenatal care
Outcome in pregnancies complicated by myotonic dystrophy: a study of 31 patients and review of the literature.
Source
Institute for Human Genetics, University of Technology, RWTH Aachen, Germany. srudnik-schoeneborn@ukaachen.de
Abstract
OBJECTIVES:
Myotonic dystrophy can be associated with increased obstetric risks, but the maternal contribution for gestational outcome is difficult to establish considering the varying degrees of severity and the influence of fetal factors.
STUDY DESIGN:
We analyzed the pregnancy course and outcome of 31 women with classic myotonic dystrophy, who delivered a total of 66 children. In addition, 93 gestations from the literature were reviewed.
RESULTS:
As most patients were not aware of their diagnosis at reproductive age, often the first indication of the maternal disease was a severely affected child (39%). Miscarriages and pre-eclampsia did not increase. Ectopic pregnancies occurred in 4%, placenta previa in 9% of gestations, while postpartum hemorrhage due to uterine atonia was only reported twice. Severe urinary tract infections were reported for 19% of the patients, but were only rarely encountered in the literature. Preterm labor, before 34 weeks, occurred in 19% of gestations and was often, but not exclusively attributed to congenitally affected fetuses in contrast to polyhydramnios (17%). Labor abnormalities of all three stages were frequent, increasing the number of operative deliveries (cesarean section rate 36%). Perinatal mortality was 15% and mainly related to congenitally affected children.
CONCLUSIONS:
The risk for obstetric complications and urinary tract infections increases for pregnant patients with myotonic dystrophy. They need constant obstetric monitoring. It is hoped that a better awareness of the clinical picture might help to improve gestational outcome in myotonic dystrophy.
Hello I am writing to ask whether you have any information on the management of pre- period cramp pain & muscular dystropyh (limb girdle type). I have a patinet that suffers from this and when she gets it it impacts her daily function. I am a qualified neuro-physiotherapist. Any information would be much appreciated. Thank you
Posted 03/14/06 at 08:30 PM #1
From: webmaster
Category: myotonic dystrophy
Date: 06 Jul 2001
Time: 07:28:32
Remote Name: 64.108.195.24
Comments
This question was submitted to us 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?
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Richard Weston
myotonicdystrophy
Super Member
Registered: 03/11/06
Posts: 334
Posted 03/14/06 at 08:31 PM #2
From: Donna Tonderum
Category: myotonic dystrophy
Date: 12 Jul 2001
Time: 23:33:12
Remote Name: 216.161.69.119
Comments
My sister and I both have DM. She has had the same problem for a long time. Every doctor she sees tells her that they can find nothing wrong with her. I do not have the same problems. We have been wondering for some time if it could be the DM that is causing her pains.
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Richard Weston
myotonicdystrophy
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Registered: 03/11/06
Posts: 334
Posted 03/14/06 at 08:31 PM #3
From:
Category: myotonic dystrophy
Date: 18 Jul 2001
Time: 19:13:11
Remote Name: 165.247.120.138
Comments
Two years after a partial hysterectomy I was diagnosed with Myotonic. The doooocter form MDA had questioned why I had the surgery done. The pain was very similar to labor pains for years. He said that myotonic can cause that because the uterus is a muscle and can often be involved.
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Richard Weston
VWJennifer
Junior Member
Registered: 08/11/06
Posts: 4
Posted 08/11/06 at 01:36 PM #4
I am 31, and had my only live birth at 18. After I had my son, I had almost constant periods. I would bleed for approximately 280 days out of the year. This went on for 8 years, with no ob/gyn finding anything “wrong” with me…hmm?? LOL
Finally I found a wonderful doc who realized something must be wrong, and after trying all the BC pills available, I had an ablation. This burns the uterus and makes the bleeding stop. It worked wonders for me, and since I had already had my tubes tied due to so many miscarriages, there was no down-side.
Jennifer
Marcell
Registered: 12/12/06
Posts: 1
Posted 12/12/06 at 02:59 AM #5
My sister and I both have MMD. My sister had these problems from the time she was about 17 or 18. Constant bleeding and terrible pain. After being diagnosed 2 1/2 years ago, her OBGYN told her that she had endometriosis. Although that was causing some of the pain (after the OBGYN had done research) she felt that the MMD had a lot to do with it. She told my sister that because the MMD had to do with the muscles, the uterus is also a muscle. When it cramps, you can’t work it out like your hand or foot or any other muscle. My sister, 26 at the time had a partial hysterectomy. Since her surgery was done she feels great. Hope this helps.
dmchat
Super Member
Registered: 05/01/07
Posts: 71
Posted 05/01/07 at 08:11 PM #6
My Wife has DM1 and has cycles from 9 – 12 weeks, after many tests the doctors agreed it was due to DM and that there was very little they could do, apart from offering IVF PGD for fertility reasons.
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Simon
lindabs
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Registered: 07/09/07
Posts: 4
Posted 07/09/07 at 10:12 PM #7
Quote:
Originally Posted by Marcell
My sister and I both have MMD. My sister had these problems from the time she was about 17 or 18. Constant bleeding and terrible pain. After being diagnosed 2 1/2 years ago, her OBGYN told her that she had endometriosis. Although that was causing some of the pain (after the OBGYN had done research) she felt that the MMD had a lot to do with it. She told my sister that because the MMD had to do with the muscles, the uterus is also a muscle. When it cramps, you can’t work it out like your hand or foot or any other muscle. My sister, 26 at the time had a partial hysterectomy. Since her surgery was done she feels great. Hope this helps.
They give my daughter Deprovera shots. It greatly reduced her pain and stopped the periods.
Initially she was on regular birth control pills but she developed a blod clot (DVT) and was removed from them immediately.
So far so good…she has been on them for about 6 months now.
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Linda
Aimee
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Registered: 07/28/07
Posts: 37
Posted 07/29/07 at 03:32 PM #8
I also have alot of pain from menstrual cramps I have also been on depo-provera, it was a life saver I have also had endometriosis removed but I would suggest depo-provera to anyone my doctor started me on one shot every two months until my periods stopped (about 4 months) then one shot every 3 months I pick it up from the pharmacy and give to myself.
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Aimee Jo
Carol
Senior Member
Registered: 08/25/07
Posts: 14
Posted 08/25/07 at 02:55 PM #9
My daughter is 36 years old and just had a complete hysterectemy. She has endometriosis also. We were worried about her being put to sleep but it went well. She was told never to have neuro blockers in the anesthetic.