Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Victoria

Sensitive Subject

Recommended Posts

Am I the only one who experiences urinary and fecal incontinence? I assume this is also related to the ANS? I've been dying to ask this question but I was too embarrassed until now. Please PM me if you're not comfortable discussing the subject openly.

Share this post


Link to post
Share on other sites

No, I don't think that is normal with POTS. I would really think you need to see a neurologist and have your spinal cord looked at through an MRI.

Share this post


Link to post
Share on other sites

Actually, I have had periods where I had fecal incontinence before. I just don't quite make it to the bathroom in time, or think I'm just passing gas and it's more than that. My POTS doctor (neurologist) told me that it can definitely be a problem for us. I've had some pretty embarrassing experiences with it. Luckily, it comes and goes. I haven't needed meds yet, but I know that there are some out there that can help with incontinence.

You're not alone!

Best,

Jana

Share this post


Link to post
Share on other sites

I'm sorry to hear you have this problem. :( I've never had this before so definitely check with your doctor.

Share this post


Link to post
Share on other sites

Hello Victoria,

Do you by chance also have a diagnosis of Ehlers danlos syndrome?! As incontinence does seem be an issue for many EDSers!

Share this post


Link to post
Share on other sites

Anna, do you know what the explanation is for incontinence in EDS? Several mast cell disorder patients I have spoken with also feel tied to their bathrooms for various reasons. I have episodes of extreme urgency, no incontinence (yet?).

Share this post


Link to post
Share on other sites

Hi Sarah4,

From what is discussed on the UK EDS site innocence seems to be contributed to issues like spinal compression, nerve impingement, over stretchy bladder or bowel. It seems to have many causes all of which should really be checked out by a doctor that will take on board the EDS diagnosis, ha I know not an easy one! From what I have read on the net it is thought that the urgency type feeling EDSers get is to do with having over stretched bladders or bowels this leads to the nerve receptors not being triggered when they should be! I have to remind one of my sons (16years) to go to the toilet as his bladder will hold over a litre of wee the normal healthy maximum, we have been told by the continence nurse, is 500ml! This over stretching of the bladder can in turn lead to a number of problems one being incontinence.

Share this post


Link to post
Share on other sites
Guest tearose

Yes, I have this. I have had POTS/ans dysfunction for many years.

I wear protective garments, ( various ones depending on my issue) , and have a change of clothing with me and know where the restrooms are.

It is worse if I have had too much fluid or go from very hot temperature into a very cold one.

I have learned how to sense the temperature and dress accordingly. I do have to be very careful in the summer going from hot outside weather and then into air conditioning. I have had to leave the supermarket when it was too cold.

I take no medications because it is usually due to environmental responses. I am also worse in the morning because I drink more to hydrate and get my bp up so I naturally have to pee more until I am finally balanced out. Once my plumbing has balanced out after a few hours of being up in the morning, I am okay.

I hope you find a way to manage. Getting over the humiliation of an accident is hard but you can do it! I have learned when I can finally leave the house in the morning and get on with my day and life.

Share this post


Link to post
Share on other sites

I also have had this problem. When I told my cardiologist about the fecal incontinence he put me on 10 mg tid midodrine with an additional 5 mg daily if I felt it was necessary. It has helped along with really paying attention to my body.

It has definitely hampered my willingness/ability to go out (e.g. shopping).

Share this post


Link to post
Share on other sites

Hello Victoria,

Do you by chance also have a diagnosis of Ehlers danlos syndrome?! As incontinence does seem be an issue for many EDSers!

Yes! Mayo genetics diagnosed me with EDS, the hypermobile type. I didn't know incontinence was an issue with Ehlers-Danlos Syndrome. Thanks so much for sharing this with me.

Share this post


Link to post
Share on other sites

Yes- me too- on both counts. I can't help but wonder if the fecal incontinence isn't related to my MCAD. Since I've been on appropriate meds for that- no issues-thank goodness. Uncontrollable "D" is common in mast cell disorders.

As far as the urinary incontinence, it's awful. If my bladder is even a little full, a sneeze can empty me :blink: Jumping jacks or jumping rope is out of the question. Last summer I ran a 7 min, 50 sec. mile- unbeknownst to me- I emptied my bladder in the process...EMBARASSING! I think this is related to connective tissue laxity. If I have a virus with coughing, i actually feel my uterus prolapsing pressing on my bladder. Kegels would be a great solution if I could only remember to do them...

I've also had the exact opposite problem a few times when I felt an extreme urge to urinate and NOTHING would come out. I surmise that my sympathetic nervous system was in such overdrive that my parasympathetic nervous system (necessary for urination) couldn't be summoned to work. SCARY. I've almost had to get to an ER for an emergency catherization. By using extreme relaxation techniques, I've avoided this so far.

Sorry you are also dealing with this, Victoria. It's awful.

Hugs-

Julie

Share this post


Link to post
Share on other sites

Thanks Sue. I've had MRIs of my spinal cord a couple of times and all is normal.

The incontinence seems to happen when I'm feeling especially bad; when I'm having one of my "storms" of tachy, weakness, etc. And the amount of incontinence I have at one time isn't small. When it happens at night it doesn't wake me — I wake up in the morning to a very flooded and messy bed. :o Sorry for being so graphic, and poor hubby.

Share this post


Link to post
Share on other sites

Uncontrollable "D" is common in mast cell disorders.

Julie, do you happen to know if "D" would worsen at the time of menses in someone with a mast cell disorder? I've had urinary incontinence since I was a kid and had many embarrassing accidents as a teenager/adult. I had bladder sling surgery years ago and it corrected the mild leakage problems, but did nothing for the big picture. The dam still breaks. It's like someone drops a giant water balloon — I have complete loss of a huge amount of urine and I don't sense a thing until it's over. Most people urinate in a stream, and I do sometimes, but other times it's like the urine falls out all at once in a big gush. I also have no sensation of having to urinate or defacate sometimes. Weird and humiliating depending on what company you're with at the time. I'm sorry for being so graphic. :blink:

I've noticed I have astronomical voids (overfilling a collection hat every time I go), urinary incontinence, and having diarrhea and fecal incontinence after I've been on my feet too long. Norepinephrine surge? Is this in the realm of possibilities?

I experience the same thing you do Julie — the exact opposite problem where I feel an extreme urge to urinate and nary a drop would come out. I once went a whole weekend without voiding. So yeah, sympathetic vs parasympathetic. What a battle.

Thank you to everyone who replied. You've all encouraged/empowered me and it feels good to know I'm in good company.

Share this post


Link to post
Share on other sites

Oh yes- "D" is much worse during menses in MCAD patients. Everything is.

I get the huge gush of urine thing. That's happened to me with a sneeze and if I exercise too hard- no warning, like a water balloon popping. I'm sort of glad to see that the sling surgery didn't correct it, but sorry for you :( My gyno wants me to have that surgery & I am stalling because of my MCAD. I hate to do any unnecessary procedures/surgeries.

Your gushing sounds like it could be related to connective tissue laxity...have you explored that?

Your urinary retention for an entire weekend!!! is quite different than what I've experienced. In my case, I have tremendous urgency. My bladder feels as though it is ready to explode, but nothing comes out. I would guess that my BP is sky high at that point- now way you could maintain that status for days... Sounds like you were really, really, really dehydrated.

Your tremendous output is consistent with dysautonomia. Docs only start to worry if you have to get up to urinate at night- especially more than once.

Victoria, your extreme urinary retention and losing control at night seem a bit out of the norm- if we even have a norm :blink: I'd be tempted to share that with yoru PCP and see if s/he recommends further testing- just to be safe.

Hugs-

Julie

Share this post


Link to post
Share on other sites

Oh yes- "D" is much worse during menses in MCAD patients. Everything is.

I get the huge gush of urine thing. That's happened to me with a sneeze and if I exercise too hard- no warning, like a water balloon popping. I'm sort of glad to see that the sling surgery didn't correct it, but sorry for you :( My gyno wants me to have that surgery & I am stalling because of my MCAD. I hate to do any unnecessary procedures/surgeries.

Your gushing sounds like it could be related to connective tissue laxity...have you explored that?

FWIW, I would also pass on the bladder sling surgery. Major and minor surgeries take me down quickly and for a long time, plus my outcome wasn't exactly stellar.

I haven't explored EDS (connective tissue laxity) as the cause of my incontinence. I've been too embarrassed (more like gun shy) to discuss it with my docs since being degraded at Mayo. The Mayo neuro looked me directly in the eyes and flat out told me I couldn't possibly be experiencing incontinence in addition to all of my other symptoms, and he wouldn't allow me to discuss the problem any further. I was completely stunned and blindsided by his reaction. This neuro's clinical report of my so-called mental status has preceded me to numerous doctor appointments, so they usually have preconceived ideas about me. If Mayo can't find "it" then "it" must not exist. I feel like I've been cornered like a rat since I went there, and in a sense I have. But I also realize I'm overly sensitive about my experiences and I need to pull up my big girl panties, try to deal with it and somehow work around erroneous impressions and documentations of me. This illness is hard to nail down because so many body systems are involved that it can make you appear as if you may be mentally ill. Like I'm telling you anything new, huh? But I do feel I've taken a monumental step toward diagnosis by getting my records to Dr. Grubb.

The entire weekend urinary retention happened only one time when I was in my 20s. I sometimes feel a sense of great urgency, sit down (seemingly forever) to go and nothing happens. Truly nothing, not so much as a drop. An hour or whatever later I try again and the dam breaks. I also feel much like you do with a sudden and great sense of urgency as if my bladder will either explode or I'll lose control. Laughing, sneezing, sudden fright and coughing are enormous triggers. There are other times when I don't have any sensation of having to void when I have a bladder full, so it's a mixed bag.

The "D" fecal incontinence is odd. I don't ever have GI cramps, but I do have a sudden and great sense of urgency and realize I have to get to the bathroom NOW (sometimes too late). I have no idea what happens when I lose control at night. All I know is I wake up to a giant mess and wonder what the heck happened while I was asleep. I'm always exhausted yet I frequently have insomnia. Once I get to sleep nothing wakes me up except for respiratory weakness, tachycardia, or when my 4-6 hrs. of sleep are in. I'm sure the deep sleep I go into comes into play with not being aware that I'm incontinent. The big question is why? And is there more than one cause in my case?

I'll be sure to give my new internist copies of my genetics workup for EDS next time I see him. Unfortunately it'll have to wait a while because hubby just changed jobs and we have to go 30 days without medical insurance. Yikes!

Share this post


Link to post
Share on other sites

I'm curious- those of you with urinary incontinence, is it episodic or all the time? My 5yr old has been potty trained off and on since he was 3. We spent most of last year with accidents-- he broke his pacemaker lead & we noticed accidents started right at the same time. Once it was fixed, rate was set high & no more accidents.. Rate got turned down- back to accidents. We have the rate high again and no accidents for 2months when out of the blue- accidents again! He tells me that sometimes he just can't feel it. I'm wondering if this is similar to what you guys experience or you just don't get to the bathroom on time? lol.. He can sometimes just sit at the table for supper and pee his pants, it's not like he jumps up to run to the bathroom- he doesn't feel he has to go and then it's over with. UGH>

Share this post


Link to post
Share on other sites

I've had this since my third child.

I actually thought maybe it was related to childbirth I didn't know.

I had third degree tears through to the rectum and a forceps delivery.

After the forceps delivery things got extremely scary.

My bladder would fill and I would not feel the need to go at all.

Scary!!!

So with the subsequent babies I had the urinary incontinence and then with the last the bowel incontinence started.

I asked about the relationship to childbirth and people didn't think it was a normal response to childbirth at all.

In time postpartum I got a lot of my "control" back but for a long time I didn't have any warning and had to get there in a hurry or I was in trouble.

Most of the time I am continent. But having an accident does not surprise me.

The other thing I get is what feels like extremely painful cervical spasm and the spasm can move throughout my pelvic floor back to the rectum all the way up to the bladder area.

I think I do get bladder spasms at times without infection-but those are not bothering me right now.

And I don't leak with that.

Share this post


Link to post
Share on other sites

Hey Momma-

That's interesting about your son. How awful that he needs a pacemaker at such a young age- but the correlation between HR and accidents is compelling. I was basically a very compliant child, but also struggled with "potty accidents" maybe till 5 or 6 y/o. I can't pinpoint exactly when my dysautonomia started.

As an adult, that is not an issue. I always have a trigger, like physical exertion, sneezing, coughing.

Makes me wonder if night time bradycardia gets your little fellow into a deeper sleep and subsequently accidents occur...

Give him a hug-

Julie

Share this post


Link to post
Share on other sites

Victoria, thanks for posting this topic. Another woman with autonomic neuropathy (for over 25 years), whom I met locally, has had major issues with both types of inconinance, and found great help with advice from the paraplegic community.

My own episodic urinary stress incontinence is triggered by sneezing, and worse during allergy season. Last winter I had a sinus infection that wouldn't improve with my non-medication, natural techniques. I broke down one evening and opted to take a sliver (1/4)of 24 hour sudafed. Not only did it improve my sinus congestion, my incontinence stopped within minutes, even though I continued to sneeze. I now carry a few quarters of 24 hr sudafed on me and which help with the stress incontinence during awkward times away from home. Mind you I don't have POTS and tachycardia for me is not triggered by that low of a dose.

Best wishes in getting to the bottom of your health issues.

Share this post


Link to post
Share on other sites

You all have just described what I was going through for 15 years before eliminating gluten, etc and taking azo with probiotics for a couple of months.

My traditional doctors did not help me with this. They only presribed drugs, imodium daily, etc etc,etc, and treated me like I was an idiot. Albiet most were polite about me being an idiot .. Lol

Uncontrollable bm.s is normally a food intolerance symptom. As are all the other gi complaints we have. Testing can find some food intolerance but a STRICT elimination diet should help you find the rest. You have to eliminate all processed foods to do this. Keep your calories up by using healthy fats.

Frequency, leakage, etc are normally urinary tract inflamation symptoms. I always test positive for trace blood in my urine but azo has eliminated the symptoms you listed. I take azo again if it flares back up. I'm doing a detox now so I needed it again.

Hth ..d

Share this post


Link to post
Share on other sites

I get weeks of urgency and urinating lots at night and then it all returns to normal and with the urgency have had a couple of leakages but put that down to childbirth ;)

Share this post


Link to post
Share on other sites

I have a problem with urgent diarrhoea and for me it usually occurs after a meal if I am sitting upright and eat too much in one sitting. I think this is why it becomes a more severe issue when I am out somewhere with family or friends as at home I eat tiny portions. Of course when you are out is exactly what you don't want as it scares me so much. Last weekend I only just made it to the toilets in a restaurant, and I had eaten a large carbohydrate meal with a fizzy drink which was fatal. I also wasn't adequately hydrated as I had travelled in a car for four hours first.

I have at times been too late which is a nightmare and always on days when my pulse pressure was too low - 80/65 standing. It is a recurring problem and one that few of us want to talk about as it is really horrid.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...