SM and menstrual cycle

[Catrine]

Hello all,

Just wondering if any of the ladies on this forum with SM have experienced problems with their menstrual cycles? i've read a few people do. My cycle has gone completely haywire. I go a few months without anything and then have multiple period cycles - the longest has been going on 5 weeks. This has been happening since the start of the year.

I guess what I'd like to know is, if you've had any medical diagnosis, what was casusing your problem? I had blood tests earlier this week and should hear the results soon. I figured that my hormones were just screwed up due to all the stress I've been under over these past few years. However, I would have expected things to settle back down now that my syrinx has been decompressed. I did ask whether I was going through "the change", but my GP thhinks I am too young.

My SM symptoms seem to get much worse when I have my period - thus it is a relief not to have it. My surgeon has said that there is a theory that women produce more CSF when they have their period. No official studies have been done but it is a theory.

Just like to hear your thoughts.

Thanks and keep well
Catrine

[Graybo]

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[toport20]

Hi Catrine,

Oh what lovely problems our bodies can come up for us huh? Well, when I was first diagnosed, I was on my period for a year...ughh. Talk about fun. I had my hormones checked, everything looked fine to my Gyno. My first surgery was tethered cord, it helped with some of my sm/cm problems but not a fix. After that year, I totally stopped my menstrual cycle, for about a year but it would surprise me and come back once or twice.

This past year, I have been exhausted, beyond exhausted. I had my PFD in May and I sleep all the time, they dx'ed me with a low thyroid but have been unable to get it under control. I changed endocrinologists and explained to her how I felt. She did a huge bloodwork test on me and found my cortisol and acth plasma levels are low and is currently looking at my pituitary gland. I guess it can affect all those things and much more.

I'm not saying it's what you have, just a suggestion so you might have a different avenue to look at. I have heard of chiari causing a flattening of the gland and causing hormonal problems. Keep us posted!!

[Andrea]

My cycles are spot on regular but I definitely notice a big increase in symptoms around the time when it's supposed to come. Sucks actually. My dh was the one to point it out to me long ago. He was recognizing the pattern. I need to get on some sort of supplement but sheer laziness has prevented me from doing so.

[NuChiarian]

I completely lost mine. It was actually one of the first symptoms I got when I think about it. It stopped about six to eight months before my surgery. Hormones and everything were normal. I had surgery to correct my Chiari and SM and bam, a month after my cycle started again. I think your brain plays a big part in the regulation of your cycle, so if something's outta whack with the brain, it could get messed up.

[gtfamily]

Wow- I'm new to the message board and was surprised and intrigued to see this. I am 45 and have been bleeding or spotting pretty much everyday for the past 2 years (I did have a short reprieve for 2 months at one point), but anyway... the day my symptoms first started (numbness), my bleeding stopped. It was so weird. That was 2 months ago and these past 2 months I have had regular periods and nothing in between. I thought it was just a coincidence, but now that it's been brought up on the message board, I'm curious. When I had all the bleeding, my primary doc and gyn did several blood tests, checked hormone levels, had ultrasound, biopsy, etc to try to figure out why I was bleeding so much, but came up with nothing. I have not noticed that my symptoms are worse during menstruation though. Anyway, curious to hear what others have to say. Thanks for posting.