New here- not new to bed wetting

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Just joined and hoping to get some feedback from people that have experienced the same problems. I’m a 36 yr old female, bedwetter as a child and teen. Around 15 or so, I finally found a pediatric urologist who was able to give me a few meds to help and I spent years dry. (Maybe a drunk accident or 2 in college)

Around 5 years ago, everything came back again and I was wetting every single night. In addition to going to the bathroom multiple times.

I’ve been to the urologist and had 2 urodynamic tests. I’ve done a sleep study at home and in a lab. No one can find any problems except for a minor overactive bladder.

Sleep alarms didn’t really work for me and would be annoying for anyone else that I’m sleeping with.

I’ve been taking care of my terminally ill mother for the past 9 months and it’s been better during that time because my normal routine is off. But, I’ll still have accidents periodically. I try to cut off my liquids a few hours before bed and go to the bathroom multiple times.

I have another video visit with my urologist in August to revisit Botox. That was the last suggestion she had. But I haven’t seen her in almost a year since I’ve been out of town taking care of my mom.

Has anyone else used Botox specifically for nighttime bed wetting? I don’t have any other leaking issues and don’t wet during naps.

Any other suggestions besides sleep alarms and pills?

Has anyone used corn silk?

I’ll take whatever advice you have!

 

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Hi Agsil
Short in time but a quick welcome. I did try cornsilk after reading about it and it seems like a natural folk remedy very very popular in Mexico for bladder health that one person did post great results here. I bought an organic tea on Amazon. It causes me to have a very active bladder in the day not just night so after 3 days I stopped.
What I've learned on nafc is everyone is different sometimes subtle some very clearly.
My point is there appears to be no one solution for everyone its individually what works.
Im also aa night bedwetting no issue in day but it started in my 50s when 9nexsummer I really irritated my bladder drinking lemonade not water in a hot Florida hospice for mom situation.

 

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Welcome! I'm not a lifelong bedwetter. I started roughly 8 or so years ago and seem to be almost nightly now. I've went through urodynamics once and several other tests and didn't really seem to have any answers. I'm still debating on going through a cystoscopy but I've mostly resigned myself (and made some peace) with wearing protection to bed. How frequent are your accidents? I know very sporadic episodes would probably make it cost prohibitive to buy supplies.

I'm not sure what the end goal for Botox would be. Did she give you any specifics about what that would do to treat bedwetting?

 

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Hello Agsil - Welcome,

Reading the post, some questions came to my mind first:

(a) Do you know why the UD was done? I ask because it is quite unusual for enuresis problems. Was the UD done in conjunction with your OAB problem and gives daytime continence problems?

(b) Do you wake up from the urge, or does the wetting happen during sleep?

(c) do you know why Botox treatment was suggested? did it happen in conjunction with the OAB and what was done about it before?

(d) what exactly was found in the sleep lab (what phase of sleep during the wetting)?

(e) was a urine test done (Not a dip-stick but a culture done in the lab) and can an infection be ruled out (the normal dip-stick tests have a very high false negative rate)?

I am not a doctor - but I will try to explain why I am asking this:

OAB and Eneuresis are two quite different things. Both can have similar causes but normally they do not.

While eneuresis can be caused by hormonal problems (ADH), lack of oxygen or just too deep sleep, OAB can also be caused by a number of physical reasons.

In general I would consider the following ways:

If you also have daytime continence problem (OAB-wet) the wetting did not happen in a deep sleep phase and wake up from the urge but can't hold it in or make it to the toilet in time then I would ask the doctor the following:

1) How does he estimate the success of bladder training?
2) What dietary advice does he have?
3) 1+2 unsuccessful: What medication does he recommend?
4) Does he think a cystometry is useful?
5) If 1+2+3+4 unsuccessful or without findings: What options besides Botox does he see?

If you don't have any continence problems during the day, the enuresis happened in a deep sleep phase, and you don't wake up from the urge, I would ask the doctor the following questions (if necessary also referral to a gynecologist):

1) Sleep lab: what was the blood oxygen status when you wet the bed? Was there any snoring?
2) (Gyn): Can the current hormone status and the ADH value be determined?

If urine examination, bladder examination, cystoscopy, medication, sleep laboratory and hormone status, etc. do not bring a result: Are there psychological stresses that may have coincided with the onset of the first symptoms?

One more note about the Botox treatment. I would consider very carefully whether the risk of the treatment justifies the benefit.

1) Basically, such a treatment is only effective for about half to three quarters of a year and then has to be repeated. The intervals of repetition usually become shorter the more often the treatment is performed.

2) There is a 10% risk of urinary retention and the bladder must be emptied by catheter for the duration of effectiveness.

I hope this gives some new ideas and with some more information I am sure others can help even more.

 

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@MichaelDahlke

Wow, you might want to consider being a physician. That was a really great response!

Let me answer your questions-
The initial UD was done on the basis of overactive bladder before I was wetting at nighttime again.
The second was done just to get a full picture of bladder function after I went back for bedwetting.

When I wet, I don’t wake up from it. I usually wake up and discover I wet so my assumption is from a deep sleep.

During the sleep study, I didn’t wet. They did claim that I got into a deep sleep during the study but didn’t discover any sleep apnea or any reason for concern.

She has prescribed DDAVP which I took with moderate success but it’s not a long-term solution. She hasn’t suggested bladder training but I will ask about that. She left Botox as the last option that she could think of that could potentially help.

I have had my urine tested but I can’t say for certain how it was tested. That’s something I will ask about as well.

I really appreciate your help and will update the post.

 

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I would suggest you see a Urogynocologist. They are specially trained in both urology and gynecology. You should definitely try bladder training which is also called pelvic floor therapy. I've tried all of the above and had minimal success, but they know their stuff.

 

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I saw a urogynocologist for a couple years only to be told by him that he didn’t know what else he could do for me. I moved on to a Urologist, top choice in my city, and she at least keeps trying to fix me. Mine is more related to OAB and IC. Very painful IC. Botox usually helps with my pain, but not so much with the OAB.

 

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Hello Agsil,

thank you for the compliment, but the knowledge comes rather from painful own experience. Doctors are similar to lawyers: If you tell them exactly what you want and what they should do, sometimes something comes of it - the only problem is - you have to be able to tell them...

Anyway - obviously your urologist has a similar idea regarding the eneuresis. DDAVP increases the ADH level and thus ensures that the water reabsorption of the kidney is promoted. So less urine is produced. Since the drug is effective according to your statement, there could actually be a problem with the ADH regulation in your body.

Unfortunately, DDAVP is not without problems, which is why it is not a long-term solution. Together with OAB it can in the worst case even aggravate the urge problem because it reduces the urine production and can lead to more concentrated urine, which in turn irritates the bladder wall. The result of this is the urge to urinate again. Drinking a lot together with DDAVP is then also rather contraindicated because the water can no longer be excreted.
Maybe that was the reason why the urologist suggested Botox - to counteract the effect of DDAVP. The combination might work as far as the urge to urinate is concerned - but it will not improve the problem of eneuresis.

To be honest, I always find it a bit difficult to try to solve the problem of one medication with another.

But at least you have another clue to the cause. Unfortunately, I don't know much about the ADH regulation system - but maybe someone here has an idea.

The UD was inconspicuous, as I assume?

 

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@Kathylp

You seem to have the exact same combination that I have. I still don't know if it's related or not. OAB wet and IC together seems to be extremely rare - especially in men. I was also offered Botox treatment, but I refused. I got rid of the pain of IC with a consistent change in diet. The idea came from a nutritionist, whom I had actually consulted because of my developing type-2 diabetes. Unfortunately, this has not yet helped with the urge problem. I have come quite far with bladder training as far as my problems during the day are concerned, but unfortunately not far enough to be able to do without protection. For the night it has brought nothing at all.

 

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Have you seen a pelvic floor physical therapist for your bladder issues? Has your urologist suggested one? You may have shortened pelvic floor muscles - sometimes called tight pelvic floor muscles. If those muscles are tight, they can cause leakage, frequency, and urgency.

In the daytime (or rather during awake hours), those muscles are always contracting (except when you actually pee) because they are part of our core muscles. They can make it difficult to fully empty the bladder as well because they may be unable to fully relax (because they are shortened) when emptying the bladder. And, pushing when you pee is a bad bad thing. Whether you push to start, push to finish, or push throughout peeing. Pushing to pee actually makes the pelvic floor muscles contract but they have to relax in order for the bladder to empty.

When we fall asleep, those same muscles finally relax. Unfortunately, during a deep sleep they can relax so much they no longer help keep the urine inside causing bed-wettting. The only way to fix tight/shortened pelvic floor muscles is to stretch them and that is where a pelvic floor physical therapist comes into play. No other modality (drugs, e-stim, Botox, etc.) will address the tight pelvic floor. You may experience some success with those modalities but they won't fix the problem. They are more of a bandaid and some of those bandaids can have side effects of their own.

 

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Thanks for the information, all. Unfortunately there aren’t any of the pelvic floor PT around where I am now (I’m in a pretty rural area) but I will look into going back home to see if I’m able to get in. I’ll also do some research on exercises I can be doing now.

I’ve been wet almost every night again this week, even when I only slept 4 hours so I’m back to it. I cut myself off from drinking at least 4 hours before going to bed and even with wetting 1-2 times a night, I’m still going to the bathroom at least another 2 times.

It’s definitely frustrating.

 

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Hi Agsil,

I completely understand your frustration, but I'm afraid this is not something that can be easily fixed. Before you start Kegels, it might be a good idea to check your pelvic floor tone. Anyway - you didn't write that much about the UD results - which might be important here - especially:

What bladder volume was measured?
What AALP was measured?
Was detrusor overactivity detected?

Why I ask this: the effectiveness of Kegel training goes hand in hand with pelvic floor strength. The AALP (Abdominal Leak Point Pressure) is a good indicator of your pelvic floor strength and should be higher than 90cm H2O. If it is lower, Kegel can help.

Bladder Volume: normal bladder capacity for women is between 200 and 400ml. The lower it is, the more urgency problems may occur. If the capacity is too low, bladder training (that's not Kegel...) can help to expand the bladder capacity. This is the typical first stage treatment for OAB.

In addition, the urgency level during the filling stage may give some clues to possible sensitivity/nerve problems.

If you are interested in more medical documentation explaining many of the values, this document may help:

http://eknygos.lsmuni.lt/springer/356/Section%20III/7%20Item.pdf

To make a long story short: Kegel is only useful if your pelvic floor is weak. If it is not, Kegel may even be contraindicated. So ask your doctor for the results of the UD and review them. The only advantage a PT can give you here is that she has a device that can measure abdominal pressure - so you can see if you are exercising the right muscle - and even measure success.

Personally, I would learn more about ADH and melatonin - because I still think that might be the key here.

 

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These are the only test results I am able to see from my chart. I'm realizing this is nothing related to what you are asking so I asked for additional info.

Spec gravity- 1.010
Glucose urine- neg
Bilirubin urine- neg
Ketones, UA- neg
Blood urine trace-intact
PH urine- 6.0
urobilinogen urine- 0.2
Nitrite urine- neg
Leukocyte Esterase urine- neg

 

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Hi Agsil,

You send the lab exam - not the UD results but this is also interesting because the spec gravity value may indicate a kidney problem (Isosthenurie). If this value is constant and renal insufficiency is not excluded, you shall exam this because this is a marker it for renal insufficiency

But what I mean is a urodynamic exam - also called cystometrie. I explained in this thread more precisely what it is:

Log In To Continue | National Association for Continence

forum.nafc.org

 

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Here’s what I was able to get from the doc:

Bladder volume capacity ~ 350 mL,
Normal bladder compliance,
No uninhibited detrusor contraction seen
Possible mild leak with cough
Increased EMG activity (pelvic floor contraction) initially at permission to void with relaxation after - possible reflex guarding vs. Detrusor-sphincter-dyssynergia vs dysfunctional voiding
PVR (residual) 15 mL
Max flow rate Qmax 22 ml/s, (50 ml/s on free flow)
Max bladder pressure pdet Max 67

 

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Hi Agsil,

these are not bad values - so I don't think that pelvic floor exercises will help much here - unless you really have a continence problem when coughing or lifting weights - at least this possibility was not ruled out during UD - but that was not the problem after all. If there really is a kidney problem, which can't be ruled out to begin with based on the lab values, then it's probably not the bladder, because the flow and residual urine values are also fine.

This actually brings us to exactly where your urologist has probably arrived. For now, there are no obvious physical or neurological causes for the problem and the bladder volume is large enough. That would actually narrow it down to two more likely areas: ADH deficiency or psychological causes. Beyond that, there are also theories about genetic causes.

By the way, the hormone ADH is also affected by alcohol or nicotine: alcohol decreases production (that's why you have to go to the bathroom more often and get dehydrated when you drink alcohol). Nicotine increases ADH production. If someone has just quit smoking, this can also have a short-term effect on the bladder until the body regulates it again.

For psyschiche causes can be e.g. depressions - there is e.g. the saying (at least in Germany) that one cries with the bladder.

 

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Hi @MichaelDahlke, I have never heard the expression that one cries with the bladder. What an interesting concept!!

 

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Just joined and hoping to get some feedback from people that have experienced the same problems. I’m a 36 yr old female, bedwetter as a child and teen. Around 15 or so, I finally found a pediatric urologist who was able to give me a few meds to help and I spent years dry. (Maybe a drunk accident or 2 in college)

Which meds did your pediatrician give you while you were a teen?

Around 5 years ago, everything came back again and I was wetting every single night. In addition to going to the bathroom multiple times.

I’ve been to the urologist and had 2 urodynamic tests. I’ve done a sleep study at home and in a lab. No one can find any problems except for a minor overactive bladder.

Sleep alarms didn’t really work for me and would be annoying for anyone else that I’m sleeping with.

I’ve been taking care of my terminally ill mother for the past 9 months and it’s been better during that time because my normal routine is off. But, I’ll still have accidents periodically. I try to cut off my liquids a few hours before bed and go to the bathroom multiple times.

I have another video visit with my urologist in August to revisit Botox. That was the last suggestion she had. But I haven’t seen her in almost a year since I’ve been out of town taking care of my mom.

Has anyone else used Botox specifically for nighttime bed wetting? I don’t have any other leaking issues and don’t wet during naps.

Any other suggestions besides sleep alarms and pills?

Has anyone used corn silk?

I’ll take whatever advice you have!