Issues with bladder, bowel & sex

[cuttersmom]

Quite a title huh??  I'm just trying to piece some things together and while it's on my mind thought I would ask.  I'll give a little background first.

39yo female diagnosed 2 weeks ago with MS from lesions on Brain, c & t-spines.  Started seeing a urologist in September for urinary frequency (although I have been dealing with it for 2-3 years) which snowballed to the Neuro & MS dx.  As far as bowel problems (haven't discussed that with any MD) I have always been a very regular AM "pooper". Although I didn't pay attention to when this started, more recently (last 6-8 months), I'm to the point where I have a BM only once or twice a week.  When I do, I have to strain, and once I start I have a hard time leaving the house cause I know more is coming.  Then the sex... Absolutely no desire for it.  Originally I attributed it to the urinary issues because I always had to pee (always tried to pee before), so just could not get into it.  Needless to say, sex has dwindled to literally nothing in my marriage.  My husband has been wonderful about it, I guess because he knows how much it bothers me with the peeing, but what I haven't told him is that I just have no desire for it.

Anyway, I'm going to Mayo in AZ in 2 weeks and am trying to write down questions for the Neuro there.  So my first question is to others with these issues.  Do you tend to experience all of these issues together because the nerves are all in the same area?  

Next question is.. Do these issues occur because of the location of the lesions on the brain?  I believe the nerves for all these areas are in the sacral region which we don't look at for MS, so I've got to think that the brain lesions, or at least on of the pathways in the c & t-spine areas are what effect it?

Any answers or thoughts would be great!

Kristen

[flowerfloosey]

Just an added comment to this interesting and vital discussion.. Lots and lots of normal women have little to no sex drive especially after we no longer want pregnancy. Saddle numbness is another thing to google.

Frequency of urination was my first symptom along with my urine feeling hot coming out when I did any physical activity.... even walking. The heat makes it worse. Being that I am so heat sensitive..I have always thought it was from that. My body core just doesn't cool itself. It feels kind of like swimming in a cold pool and then going pee in a nearby potty and it feeling hot coming out.

Anyone else feel this??

[singinalong]

wow, great discussion!!! I can relate to the sexual disfunction...not a symptom that I have really taken the time to look over, I have been so consumed by the visual problems. My husband has been good about it too... he gets a little nagging at times. LOL -- but thats totally it.. Just NO desire. AT ALL -- I could care less. ... and that has been the last 8 months or so... The bladder urgency as well... but more the bowel urgency. gotta go gotta go gotta go right noowwww...
But, seriously, it has been hard on our marriage at times. ... frustrating for my husband, but for me, I just got nuttin.
Very interesting information!!

[cuttersmom]

Thanks Bio - Nope not into vertebrate embryonic development..LOL! Thanks again for the info.  I had the dermatome map in my head (from being a recovery room RN), but still wasn't sure where everything was.  Actually one of the sites that came up for Myotome, was pretty basic.  Pelvic plexus was giving me some funky things, so I did not take the time to go through them.  Will do that tomorrow.

Have a great night!!

[biowham]

I suggested you look up "dermatome" because the myotome maps on the Web kinda suck and the dermatome maps are comparatively beautiful and more illustrative. That's why I sent you to the plexus, which homes in on the myotome area of interest.

Probably not so interesting fact: In my field, which involves developmental biology, myotome has a different but related meaning. Yep, scientists are purposely confusing! That's why, if you google myotome, you get a lot of pictures of an embryonic structure called...a myotome, and it's not the myotome you're looking for, unless you're into vertebrate embryonic development.

Making lists is a great idea. Keep 'em short and sweet, but they're great reminders.

Bio

[cuttersmom]

Thanks for all the info.  I actually have been meaning to look up the dermatomes, so finally did after Bio put it in my head.  Dermatome are on the skin. The organ receptors are called myotomes (learn a new thing everyday!!)

Sacral 3, 4, 5 are all about bladder, bowel & sex organs.  And something else I read said that all of these can be effected by the lesions in the upper part of the spinal cord. So I guess that kind of gives me an answer.

I am making a list for the Neuro so I don't forget anything (as I seem to do a lot lately!), and I will definately add these things on the list just so I can understand a little better, and hopefully find some solutions!

Kristen

[Lulu54]

Kristen,
Yes, all three can and often do go together.  And as Bio points out, it is all tied together by the sacral nerves.  It certainly is not a fun threesome to deal with.

My husband was almost relieved to hear the lack of desire on my part has little to do with him and everything to do with my MS.  My GI doctor just today told me to take glycoLax once or twice a day to help with the constipation - it can be bought OTC as MiraLax.   The bladder issue and the neurgenic pacemaker implant I think we've talked about.  The pros may far outweigh the down side of no MRI's,  Good luck with the clinic visit and please talk to them about everything - they have heard it before....

Lulu

[biowham]

Hi, Kristen--

The usual caveat--I am not diagnosed with anything--but I just wanted to chime in that I also have to pee during sex. I'm not worried I'm going to pee, I HAVE TO pee. I go before, I go after, and I interrupt everything and go in the middle. We're talking real urgency here. That's no surprise because I actually pee probably 20 times a day, at least, also always with urgency. So far, the only sign that there is any kind of bladder problem for me--other than that constant peeing thing--is two UTIs back to back, although the second "UTI" didn't grow anything in culture--I just have astronomically high leukocytes (white blood cells).

That doesn't answer your question about innervation at all, I know. Quix may have this down better, but if you google "pelvic plexus," you'll find some information. You can also google "dermatomes," and you will see that those areas do have some in common. You'll see that part of it is covered by the sacral nerves. It's no surprise that you have this trifecta of issues.

Bio

[cuttersmom]

Thanks for responding.

At this point the only medication that I take is Baclofen (waiting on insurance for Copaxone), but I only started that about 2 months ago.  I tried doing Metamucil, but that didn't help.  As far as increasing fluid, which quite honestly I need to do, I don't do because of the urination. I'm an RN, so it's already hard enough to go the bathroom the number of times that I do, let alone adding more fluid!  I do have neurogenic bladder (the urgency is due to retention) and am holding off on getting a neurostimulator implanted until I talk to the MD at Mayo.  My neuro here wants me to get it done for my comfort. I questioned the further ability to get MRI's and she felt that her dx of MS is correct and therefore would not need any further MRI's unless we got to the point that we thought the disease was progressing. I guess at that point I would have to have it removed.

As far as intimacy.. I'm pretty sure I'm not numb. Just no desire. Not really frustrating for me:), but I know my husband (who has been a godsend dealing with me) may begin to have issues soon!  I will bring all the up with the MD at Mayo, and hope that we can piece it all together there.

I'm just thinking there has got to be a connection between all three somehow.  And until I was told I had MS, that dx had never entered my mind so I never put all three together!  You've given me some things to think about, and I appreciate all the info.  Good luck to you!

Kristen

[Heather3418]

Boy Kristen, you are going through alot of issues.  Are you taking any medication for the bladder urgency?  It does sound like Neurogenic Bladder.  I just think about peeing and boy I better be right near a bathroom or I'm toast.  I do not take anything for my bladder, because it causes so much dry mouth, that is already a problem because of other medications that I take.  It's hard to go through everyday picking what seems like cottom out of your mouth.

Your bowel problems can be nothing more than not taking in enough fluids during the day.  If you are taking medications that can cause constipation, this can also compound the problem.  This should be brought up to your doctor, so he can determine whether this is neurological or caused by your diet or medications.

In my life, I try to increase the fluids, eat plenty of fiber and take a stool softner twice a day.  I am still plagued with constipation, most probably due to my medications and possibly the lesion in my throacic spine.  I just don't know.

Your fear of piddling during sex is probably affecting your desire for intimacy.  This happened to me and I was sure there was something mentally wrong with me.  My Neuro said that my fears of having an "accident," during sex, did have an emotional effect on my sexual desires.  It may also have to do with my age (55) and the start of menopause.  As you know they call it MEN O PAUSE.  Our hormal levels during the stages of menopause also have something to do with desire.  

You need to talk to your family physician or Neurologist about your problems and your fears.  Talking this out with a professional, gives you a better understanding of why you have a diminished sexual desire.  It also may be caused by some numbness in the genital area (IF you have that) that may be causing your bladder issues.  The "message" isn't getting through properly maybe because of your spinal lesions.

As I said, this is something to talk over honestly with your doctor.  There are all kinds of ways they can help, so you are not chained to the house when your bowels are messing up.  When you are severely constipated by the way, you can have loose stool come AROUND the firm stool.  This happens to me often.  This tells me that I must do what I really don't want to do.....take in more fluids (which makes me pee even more)

Good luck to you dearheart and make sure you understand that no subject is too sensitive on this Forum.  We are all here to help.  Most of us have been through this too.  There are alot of soft shoulders around here.

Let us know WHEN you have that talk with your doctor...okay?  Chin up...

Best Wishes and Forum Hugs,
Heather