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?
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| From: Donna Tonderum Category: myotonic dystrophy Date: 12 Jul 2001 Time: 23:33:12 Remote Name: 216.161.69.119 CommentsMy 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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| Posted 03/14/06 at 09:31 PM | #3 |
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| From: Category: myotonic dystrophy Date: 18 Jul 2001 Time: 19:13:11 Remote Name: 165.247.120.138 CommentsTwo years after a partial hysterectomy I was diagnosed with Myotonic. The doctor 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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J
| Posted 08/11/06 at 02:36 PM | #4 |
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| 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?? LOLFinally 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 |
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Registered: 12/12/06
Posts: 1
| Posted 12/12/06 at 03:59 AM | #5 |
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| 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. | |
Super Member
Registered: 05/01/07
Posts: 71
| Posted 05/01/07 at 09:11 PM | #6 |
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| 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. __________________ Simon |
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Junior Member
Registered: 07/09/07
Posts: 4
| Posted 07/09/07 at 11:12 PM | #7 |
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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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Super Member
Registered: 07/28/07
Posts: 37
| Posted 07/29/07 at 04:32 PM | #8 |
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| 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. __________________ Aimee Jo |
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Senior Member
Registered: 08/25/07
Posts: 14
| Posted 08/25/07 at 03:55 PM | #9 |
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| 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. | |
I have myotonic dystrophy. I’m 42 years old. I was diagnosed at Mayo in 2005. I do have increasing pain and nausea with my cycles. This sucks as my GI tract is already compromised and I’m allergic to Reglan and other motility drugs. Not to the stomach implant stage yet. Anyway, I e never been able to carry to term and am not healthy enough to care for infants. My mother has been diagnosed with stage 4 endometrial and uterine cancer. So, I’m thinking a hysterectomy may be what is ultimately best for me. I just want relief. Antiemetics suck. Pain medicine slows the GI tract even more and I’m allergic to weed. So far most doctors think I’m going to change my mind and want a kid. After 3 miscarriages late first trimester, no. So, let’s just cut this out already!
You’re all in my prayers for your ongoing battles with this disease. Stay strong.
I was just diagnosed with myotonic dystrophy two days ago.
I suffered terribly for many years with intractable menstrual cramps. No doctor could ever find anything wrong with me, and I was treated very badly by a number of them (more than half of which were women!), who seemed to believe I was making it up, or was just very wimpy.
What worked best for me in the end was simply regular aspirin one to three times a day for the first day or two of my period. In addition, muscle relaxers such as baclofen (which was prescribed for a different reason) helped a lot, but all the muscle relaxers had unpleasant side-effects (mainly tinnitus which didn’t go away when the medication wore off) so I avoided them unless the pain was excruciating. Other painkillers, including narcotics, had no effect whatsoever on the pain.
But reading this thread, I see that I am very, very lucky I didn’t have endometriosis, endless bleeding or pain three weeks out of four. But perhaps then the DM would have been diagnosed earlier.?
It is a bit of a relief to know that there was a “legitimate” reason for all those decades of suffering. Which is over, as I had early menopause at the age of 41. It was like somebody switched off a light. One year of slightly irregular periods, and then nothing. Luckily I didn’t want to have children, but still, I am not happy about suddenly turning into an old lady at the age [now] of 46.
Obviously I have a lot to learn, still trying to deal with the diagnosis and the upcoming cardiologist appointment, which I am dreading.
In my teens and twenties, I was an athlete. Nowadays, it is a big day if I walk a mile.
Sorry for the long and meandering post, and so many years after the last one!
So the only thing I can do to get rid of this pain is a hysterectomy???