Make this crap stop

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So let’s start with a little about me, I’m 21 and live in constant fear of normal everyday things, having a girlfriend, spending the night at a friends place and even vacations. I have become a hermit, no traveling, no friends and no love life. I’ve been to doctors, been on medication and for about six months I ate one meal a day ( that actually worked for a little while, but I don’t recommend it) I’ve had alarms and diapers and bed covers my whole life and it just seems terrifying to be the only one out there like me. If anyone knows some way to make this crap stop please for the love of god post it below. I’d love to travel, have friends, maybe one day a wife and kids but all that is hard to imagine when I wake up everyday no doubt covered in piss
 
First of all, don't lose hope. Secondly, take my word for it- you're not the only one dealing with this. Just about every grocery store and literally every drug store carry incontinence products. They wouldn't be as common if the problem wasn't also very common. One thing I'm going to suggest you consider is that a normal life isn't impossible for you. Yes, you have to deal with all this crap (I agree with you on that), but if you tell yourself that somethings are going to be very difficult or near-impossible, your mind is going to be 'set' to thinking that way. But what if you're wrong about some of this? The right girl may not give a damn about what kind of underwear you wear. Stop and think about this as well: If all things were equal, and you met the right girl, but then something changed- perhaps she lost her sight, or maybe she turned out to not be 'perfect'... would you walk away? I bet you'd say 'No.' And not every girl is going to reject you for this. I know that for a fact.
I assume you are wearing protection at night- if anyone- friend or potential date/wife can't deal with this reality, they are ruling themselves out as a genuine friend or partner. There will always be factors that will prevent, hinder or end a relationship- this is simply one of many. I'm going to suggest you cut yourself a whole lot of slack- enjoy life, try doing the things you think you can't do, get to know others and let them share their flaws with you. This forum is a good one; I assume you are new here, so I hope you will get involved on some kind of regular basis. I wish you well, and I wish you a Merry Christmas, too.
 
Okay champ; I've got questions.

I remember way back when I first joined - a ton of people came in like Radiator Springs and started asking questions and trying to sort me all out, so you deserve that too. I ask these only so that others on here who suffer and have knowledge on there own experiences, can have more of an idea of what's going on to better help you get sorted out.

1. What medicine have you been on? Did you take any medicines that just didn't work at all, worked some?

2. In terms of continence issues - do you suffer from daytime symptom issues as well - pain, urgency, just night?

3. Have you seen a specialist besides primary GP? If not, please do. We always recommend newcomers to visit a Urologist that way you have more of an indication of what condition you may or may not have.

4. You mentioned eating one meal a day - as this is the NAFC; are you mentioning both bowel AND bladder issues? I'm going to assume just bladder - please drink fluids if so - hydrating can actually help you long term if you push through the 1-2 days of less control, increased pain and urgency.

Anyway, my name is Honeeecombs - I suffer from OAB Syndrome, Autism and Schitzophrenia - I wish you a Merry Christmas and hope you are finding ways to stay positive regardless of your troubles.

Take care,
Honeeecombs
 
As it’s just bladder I work construction so I sweat a lot during the day so it helps by not having a bunch of extra liquid, idk what medication I’ve actual been on a lot of that was probably around 5-15 age wise and I’ve been to literally 10 different doctors, and it’s only at night, I can take a 6 hour nap mid day and be completely ok but at night time all bets are off
 
Njal said:
As it’s just bladder I work construction so I sweat a lot during the day so it helps by not having a bunch of extra liquid, idk what medication I’ve actual been on a lot of that was probably around 5-15 age wise and I’ve been to literally 10 different doctors, and it’s only at night, I can take a 6 hour nap mid day and be completely ok but at night time all bets are off

I'm going to ping @msuspartan if he is glancing through threads and maybe he can be of assistance to you. Those symptoms and things are different from what I experience with my bladder condition.

Do you have issues with constipation? I know that's kind of a TMI question - but there is this doctor named Steve Hodges who works in pediatric Urology who's made scientific strides in treating continence issues from those from youth.

Here is his email: shodges@wakehealth.edu

The only reason I recommend this is because you said you've endured this your entire life - you may have a gastrointestinal condition or issue that is causing bad bladder control.

----------

Either way, let us know what you find out and what doctors tell you @Njal. Welcome to the NAFC.

Blessings In Christ,
Honeeecombs
 
Njal,
Your condition isn't entirely new to many of us; trust me on that. Since you are open to suggestions, see my profile for a picture of an external aid that is very effective in managing night leakage. The combination of the aid and sleeping mostly on one's back is very effective. Our aid is still patent pending, but we are shortly going to conduct what may be our last field test with volunteers with the latest iteration. We have been developing and testing this product for over five years and so there isn't much guessing as to its efficacy. If interested, send me a private message with your email so that I can send additional info. Else, my address is: info@assure-medical.com Best wishes. fynlee
 
@Njal Do you mind saying what part of the country you’re in, so we can possibly recommend some outstanding clinics to you, if you live by any?
 
@Njal As for dating, women are more understanding and supportive than men, typically, so if you’re dating a female, I think you can expect most of us to be tolerant about your needs, and to have empathy toward you. I’m sorry to hear you’ve suffered your affliction at your young age. I didn’t start until I was age 39 (because I fell down a cliff and damaged the nerves between my bladder and my spine) and by then I’d been married and had lots of boyfriends, so it was sort of okay. I’m definitely really lonely but at least I had lived my earlier life to it’s fullest.

The medications don’t work for very many of us, either. Have you tried Botox injections in the bladder? They temporarily paralyze the bladder so you have less wetting. I typically pee every 5-60 minutes during bedtime, and sometimes have nights where I go through six diapers (happened twice this week). But when I get Botox, for three months afterward, I only pee about once per night and typically don’t wet my diapers nor my bed. It’s a miracle! You should talk to your urologist about trying them.

Have you heard of Diabetes Insipidus “DI”?


You should have a doctor evaluate you for that. It’s not diabetes like the sugar kind of diabetes. It’s a kind that makes your body save pee during the day then pee it out at night. There is a very good medication to fix that condition, called Desmopressin, or DDVAP. It reverses that kidney trouble.

Hope you feel at least a little better knowing you’re not alone. You’ve come to the right place. You’ll easily make good friends here who will support both your mental and physical health as it relates to your condition. We often talk about our frustrations in here, so know that you have a place to vent. We talk about everything; you’ll see - and you can, too!

You’ll have more responses soon; people are kind of busy right now with their families, but they’ll get more active again on the forum as the week goes by.
 
Yeah it’s it cool that there is an actual page for stuff like this, it for sure is lonely, still icing at home and I know my family means well but every once in a while someone gives a nasty look as I’m on my way to the laundry room or makes a comment about smell, it doesn’t bother me as much now as it did then but it really seems that it’s like people look at you like a toddler sometimes
 
@Njal I’m sorry your family members have ever treated you like that; that’s horrible and inappropriate.

I don’t know if anyone on here lives near Memphis to recommend a good urology clinic. I’m in Salt Lake City, Utah.

I’ve been to Memphis. I visited Graceland and ate tons of Buffalo wings near there - the very best Buffalo wings I’ve ever had - from a drive through place!!! I also went to Sun Studios and explored downtown. I went there during the winter and expected it to be sunny and balmy and green, but no, Memphis gets the brown look of winter, too!
 
I got a response from that email you sent me, they told me to go to a urologist and get a couple types of exams they also sent me a couple of other pages similar to this one but geared towards teens and younger adults. I absolutely love the help I’m getting on here so far. Y’all are dope, and what exactly is Botox? I thought that was the stuff they used to make peoples face look younger
 
Botox has been used since the 1950s to aid those with crippling overactive muscles. The first treatment involved injections to the eyelids of those who have a disorder that makes their eyes constantly fly from side to side, and they also can’t stop blinking. Finally, after receiving some Botox in their eye muscles, they blinked almost normally, dramatically reducing their headaches and improving their interactions with society.

Eventually, doctors also tried Botox on the overactive bladder muscle, and for some people, it makes a huge difference (like me; my official diagnosis is Neurogenic Bladder which means bladder malfunction coming from the spinal nerves). Botox calms my nerves down as well as my bladder muscle.

Yes, people now have botox injected into their face muscles to temporarily, partially, paralyze their face muscles - then, they have less wrinkles. That’s cosmetic Botox. Botox in the bladder is medical Botox. Some people on the forum who have hyperactive bowels get bowel Botox. The only downside is you have to get it every 3-6 months but it’s sooooooo worth it.

If I go to see a movie in a theater without Botox in my bladder, I’m up and down every 5-20 minutes, without much warning, and often have accidents that make me have to go home before the movie is over. But when I have bladder Botox (I’m getting it again on Wednesday this week; can’t wait!!!), I can make it through at least one entire three-hour movie without needing to pee because the Botox partially paralyzes my bladder so it’s not overactive any more; it goes back to normal. I only have to pee once during bedtime, usually at 6:00 a.m., which isn’t unusual for a woman my age (46).

I hope you’ll be a candidate for it and will give it a try.

There is also a device, about the size of a pager - like 2”x2”x1” - that can be implanted near your spine. Electric signals from the device control when you do and don’t need to pee. There are men on here for whom it has worked wonderfully for 20+years. When their old device finally wears out after about 10 years, they get another one. But some other men, they find the device painful or ineffectual. You would first get a trial version of it for two weeks to make sure it would work for you before you would get the permanent device implanted and connected permanently to your bladder nerves. You and your doctor can adjust the electrical frequency from the outside of your body to make sure you’re not in pain (it’s like a super tiny electrical charge) and that your bladder is behaving how you wish it to. You would also get fantastic support from the company representatives who can also help you adjust the electrical frequencies.

It’s called InterStim. I think you can also have a smaller version implanted in your lower leg.

Here is a description of it:


Here is the primary manufacturer who makes them: Medtronic


And here is one last link, from the federal government:


Somebody I know on the forum who hated the InterStim is @ThatFLGuy. He can tell you why. But there are several men here who love it! I just can’t remember their names; I’m sorry! Hopefully they’ll see this post and come out of the woodwork to talk to you about it.
 
@Njal Also, you would likely greatly benefit from doing a few physical therapy sessions to learn how to do Kegel exercises, which help strengthen your entire “pelvic floor muscle.” It’s a big muscle. You can try to find a YouTube to teach you about how to do them, but truly, having another human help you by sitting by your side is really the best way to figure it out. Once you strengthen that muscle, you can flex it when you need to pee so you have long enough to make it to the bathroom - most of the time ;) Of course Kegels don’t help you avoid bedwetting because when you’re asleep your body isn’t flexing muscles. I’ve been meaning to tell you that peeing a lot at night and/or bedwetting has a medical term; it’s called “Nocturnal Enuresis.”

In terms of alarm treatments, they help almost nobody. I’ve been on the forum for years and I’ve only ever seen one woman say alarms helped her daughter outgrow bedwetting when she was a child. But if you tried alarms when you were a child and you didn’t benefit from them, you likely won’t benefit from them as an adult.

Diet can matter a lot. Try not to drink coffee or tea or any caffeine after noon 12:00 p.m. because caffeine is a stimulant and will make you pee more at night. I reduced my coffee intake only one cup, on 1-2 days per week when I reallllllllly need it. If I’m going to drink soda with caffeine, I try to get in by noon, but definitely no later than 6:00 p.m. Some people benefit from avoiding spicy foods, but that doesn’t make a difference to me. Others say drinking cranberry juice helps them with their overall bladder health.

The number one substance that increases urination is alcohol, particularly beer, because beer has a big amount of liquid compared to say, 1 oz. of vodka or tequila. I know you just barely reached the age where you can finally legally drink booze and it would be a huge bummer to avoid it. I loved having a couple of drinks a week but I gave it all up 4.5 years ago. But at least I made it to 41.9 years old before I had to quit for my bladder. You’re just 21. So I really feel for you. You can still drink, just remember to plan ahead to wear a heavy diaper plus a few pads that night, so your bed stays dry.

I drink most of my total fluids in the mornings, then I reduce my liquid intake after 12:00 p.m. noon. That means ALL liquids, not just drinks, but soup, yogurt, and ice cream. I know if you work construction, you WILL need to be drinking water and possibly caffeine in the afternoon to get you through the hardcore physical labor.

Here is an article about what to eat and drink to reduce frequent urination:


Some people drink extra water to keep their bladder healthy. But water makes me have to pee worse than does Coca-Cola. Dramatically restricting my entire fluid intake is the only way to make sure I pee less. But it’s not healthy for the rest of the body. I used to drink 64-100 oz. of fluids per day, and I loved feeling healthy and hydrated. Now I drink no more than 32 oz. per day, and usually even less than that. I miss feeling hydrated, but my priority is to spend less money on diapers and to pee less at night.
 
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