The rule of thumb, at least for Stanford patients, is to avoid the use of any birth control containing hormones. 

Michele, I'm not clear if you've had surgery yet or not.  I seem to remember awhile back that one of your posts indicated you were scheduled for surgery(?)  Maybe I've missed something, but I can't tell by your post if you've had it/them.  It seems to me that your symptoms, whether they're pre or post surgery might be concerning.  I'm sure you're keeping your doctor in the loop, and I hope the symptoms resolve soon!

Jill

Quote:


Thanks for your response Lore, I would like to ask, besides the copper IUD, what are those methods?
The Depo Provera is a progesterone only injection, it contains no estrogen (thats my understanding) and it is not a "pill."  I was just wondering what was meant by the quote on the Stanford site that indicated no pills, but other BC was OK.  What is the "alternative" BC that doesn't have hormones and is fine???  I am aware of endometrial ablation (which still requires another form of BC be used and may require hormonal tx for 1-3 months prior to thin the lining of the uterus), tubal ligation, hysterectomy, and copper IUD. I was on the depo injection because of increased risk factors I already had with the pill, such as the ones you mentioned.  I also did not have these MM symptoms when I was on the depo-provera injections.  I am not naive enough to believe a depo shot will "treat" my symptoms, but it certainly did seem to help, or at the least things have gotten worse since I went off it.
Thanks,
Michele

Hi,
I was diagnosed w/ MMD in 1993 at age 18 when I had a stroke.  I was completely paralyzed on my left side(I still have some peresis) and told I'd never walk again but am walking, got a college degree and went on for my masters to become a  a Speech-Language Pathologist.  I had surgery (EDAS) within the year of my stroke and am doing well.  It's been 16 years now and I've since gotten married(about a year now).  I'm 34 and wanting to start a family.  When I first got married  I  was on the Mirena, a low dose hormone IUD but decided to switch to the copper IUD since it is hormone free.  I know most IUDs are recommended for women who have had children already but I discussed my situation w/ my OB and decided to go for it. I did well on both(did not dispel either) but liked the copper since it had no hormones, I actually had a period and I didn't have to worry about any hormones putting me at risk with my MMD.  The other options were barrier methods but it seemed too cumbersome for me and my husband's liking.  I'm wanting to get pregnant soon since I'm not that young and will already be "high risk" so I got some advice from my doctors, began the planning process and went ahead and got my IUD removed so we could move forward.  Despite my challenges,I've had a positive experience so far.  It's good to know the risks but also encouraging to know it's not necessarily going to be as complicated as I thought.  So far  my doctors have been supportive.  I also have diabetes type 2 and a seizure disorder as a result of my stroke.  I saw a fetal specialist today(recommended for any high risk pregnancy--which means any one with MMD) and got the go ahead,and directions for what precautions I need to take.  I also found out that since my MMD has been treated and I'm doing well in addition to being seizure free for 5+years, my Diabetes is the highest risk factor for pregnancy for me.  This surprised me a little since I thought he would say MMD would complicate pregnancy the most.  He did say c-section is not necessarily the only option for those with MMD but that in fact  he's known several women w/ MMD that have had vaginal births BUT they should be closely monitored esp. since hormones, overall circulation, BP, etc. will change during pregnancy.  He also talked about  inter cranial pressure during labor being the biggest concern for anyone w/ MMD but reassured me that labor can be eased with proper monitoring, the use of suction, forceps etc. during delivery. 
**IT'S TRUE THAT EACH CASE IS DIFFERENT SO MY ENCOURAGEMENT WOULD BE TO CONSULT SEVERAL SPECIALIST(especially the ones that know you best)& PROCEED FROM THERE FOR WHAT'S RIGHT FOR YOU.**  In my opinion, you can never get too much counsel on the topic.  My seizure specialist said there's nothing better than planning ahead if you want to get pregnant. He could not emphasize the BEFORE you get pregnant statement(and it just makes that much more sense for those w/ MMD).  Just want to share my story so it helps others and so you don't feel alone b/c you aren't.  I hope that helps you.  Feel free to contact me if you want more specifics or want to chat more.
Aloha,
C

OK - I just spent like an hour with a  BC specialist yesterday. I have the Mirena, it was inserted 6 weeks ago. I have been told NO ESTROGEN, PROGESTERONE IS OK. My specialist said the same thing - she also gave me a lot of information about being very careful when getting pregnant, giving birth etc. I was on a pill then the MICRO PILL - which was a no estrogen pill. Yes, the implanon and the depo are also non estrogen birth control bill options. It is also my understanding that the copper IUD is the only NON HORMONE - non progesterone also IUD and birth control option.