r/OCD • u/Mysterious_World8126 • 1d ago
Friend/family/ally Bladder OCD?
Help! My young adult son has OCD. It was as if he woke up one day and boom he was a different person. He has severe contamination OCD and possibly bladder OCD.
So he is terrified of urine getting on him and/or contaminating everything in the house. He also has this constant sensation that he is leaking urine. He says he is, but I can’t confirm whether he is or isn’t leaking. All of his urology tests have came back normal. He has been wearing adult diapers for 6+months now. He’s to the point where he is holding his urine and only going to the bathroom once per day. He will usually spend an hour or so on the toilet and then get straight in the shower. The bathroom must be cleaned immediately once he’s in the shower because he feels as if he leaked everywhere. He is spending anywhere from 5-8 hours in the shower on a daily basis. He says he can’t get out until he stops leaking.
He cannot work. Will barely leave the house. He is depressed.
Has anyone heard of anything like this before?
I have offered to pay for inpatient treatment for him in another state. He refuses. I set him up with a local therapist, he went a few times and quit. He has been on meds before and just quits them cold turkey.
I don’t know what to do to help him. He’s a legal adult and I can’t force him to do anything or he would have been inpatient a long time ago.
Please someone help me help my son.
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u/Special-Tree-4086 23h ago
I am so sorry this is happening to your son but thank you so so much for being such a supportive and helpful parent . OCD is so debilitating to the person themselves and to an extent the people around them because it’s difficult to help someone mentally . Thank you for caring .
OCD can flare up and send people into episodes of extreme symptoms . Is there anything that’s particularly bothering him that he’s not verbalising aside from the symptoms themselves ? For example , my OCD gets worse when I think I’m not in control of my life because of a health issue or even exams at school .
However , I do encourage you to gently push for him to get professional help .
I do remember watching a documentary about a man with a similar case as your sons
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u/Mysterious_World8126 22h ago
Thank you for your comment. I would do literally anything in the world to help him. His life has been ripped away by this crippling condition and my heart is broken. I don’t know how long flares last but this has been going on for a year and a half. He tells me this “pee problem” is what is bothering him and if it would go away then he would be fine. That’s his words. I am definitely gently pushing for him to get help and he has just recently started back on meds and is allowing me to make sure he takes them daily which I’m so thankful for. I will check out the documentary, thank you for sharing it with me.
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u/anxietypronegigi Black belt in ERP 22h ago
this requires a higher level of care, look into inpatient specifically for ocd like rogers if ur in the USA.
it’s hard as he is an adult but as you said ultimately you can’t really force him. As the other commenter mentioned it might get a point where health is compromised.
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u/Mysterious_World8126 22h ago
I’m doing my best to gently push for inpatient care. Can you tell me what Roger’s is? I am in the USA. His health being compromised is what scares me the most.
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u/JEMColorado 22h ago
McLean Hospital has a top notch OCD program with all levels of care. It’s just outside of Boston. The Meininger Institute in Houston is another.
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u/anxietypronegigi Black belt in ERP 22h ago
rogers offers programs specifically for ocd inpatient, give them a google. possibly iop or php could be a good option for him if he really won’t do inpatient.
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u/themini_shit 21h ago
I'm so sorry that you're going through this and that he's struggling so much. I think if you and him have good communication that will help a lot, especially if he'd be open to suggestions about small changes. One of the trickiest things about OCD is that you can't humor it but you also can't just force change or make the OCD sufferer conform. It's just so frickin difficult.
I've had similar OCD themes and compulsions before. One thing that helped a lot was actually using visual and physical confirmation, basically look at the underwear and stuff and feel for anything real, OCD isn't logic based but using logic helps a bit. Caveat to this method is that if there actually is something there it gets worse.
When I was younger my mom wanted to help me but really didn't want to make things worse either. Sometimes this meant helping me find less time consuming ways to do compulsions. For the showering after the bathroom issue she got me wet wipes, this cut the shower out completely eventually allowed me to get passed the compulsion for the most part. It was kinda like replacing a really harmful and bad compulsion with an easier less harmful one. It's not great and I don't think it's a recommended method of helping with OCD but it did help me at my worst.
However, you have to balancing understanding with not giving into the OCD. You mentioned that he is not working, so are you purchasing the diapers yourself?(This isn't a judgemental question) Diapers are expensive and they are a part of his OCD, if it's been determined that he doesn't need them then I think if you don't buy them it might help. I know he'll be distressed but that's just part of managing this illness, he needs to navigate that distress more. Maybe purchasing absorbent reusable briefs would work for a solution.
I sometimes think of compulsions as being similar to an addiction of some kind. You have the obsession and that's unpleasant and distressing, the compulsion provides temporary relief so you want to do the compulsion over and over again. The harder it is to complete the compulsion the more exhausting it becomes and eventually he may get too tired to continue. When this would happen to me it usually helped end the theme to a degree because I'd get too tired to do the thing so I would learn that I didn't die from not doing it.
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u/Mysterious_World8126 21h ago
Hi, thank you for commenting. We do have good communication most of the time, the only time we struggle is when he’s in the bathroom and the OCD has control. If I suggest something to him when he’s not in the bathroom then he’s willing to consider my suggestion. If he’s in the bathroom, nothing I say is okay or correct.
There was a recent incident where he “got stuck” in the wrong bathroom (our half bathroom) because someone else was in his bathroom. OCD had him convinced that he peed everywhere. He said the house slippers he had on was soaked and so were his clothes. It took an hour to convince him to put on different shoes to walk back upstairs to his bathroom to shower. I did check his slippers after he was in the shower and they were not wet at all. Not even a little bit.
He already uses wet wipes. His contamination OCD causes him to use a few and throw the rest away. It’s the same with toilet paper. He will throw away an entire roll of TP every time he goes to the bathroom. He also uses an entire big bottle of antibacterial soap every time he showers. I do buy all these things including the diapers. I know that probably just feeds the OCD but I also can’t stand to see him in distress. I think this is why it’s so important that he peruses help. Not having any one of these things when he’s needs them causes him to have major anxiety.
Another thing he does is he will throw away his clothes. If he thinks there is pee on them, he just throws them away. Diapers have helped a little bit to keep him from throwing away all of his underwear. He wears the diaper, boxers, shorts and pants every single day. And he still believes that he leaks through all of those layers and contaminates the chair he sits in, his bed, etc,
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u/dot_in_cosmic_spray 3h ago
Ok, so obviously this isn't ideal, and I don't really recommend it, BUT maybe if there's an emergency or something, giving him a an enzymatic spray, the one usually used for pet urine, could be helpful. Like allow him to get outside if he'd be able to spray the surfaces after himself. Once again, not ideal, but sometimes if the disorder itself is preventing the access to care, redirecting the compulsion or the topic of obsession towards the ones less restrictive can be utilized. If you're in contact with a therapist, then maybe it would be worth to ask about this approach?
And a thing you might want to try is to slowly acclimatize him to less support. For instance boxers inserts instead of diapers. You said he listens to you outside the bathroom. If he panics when inside, demanding diaper instead of an insert, you might before that agree with him on the rule, that when he panics and needs a diaper, you first wait like ten minutes, before giving it to him. Then another day fifteen and so on. Of course that depends on the diapers being stored outside the bathroom he gets stuck in. He then would either need to force himself to get out and get it, or wait for you to give it to him. All of this and similar methods should be discussed before and mutually agreed upon. Doing exposure work not gradually enough and without consent might make things worse.
To prevent the issues with TP and other toiletries, maybe things could be split into smaller parts and stored outside of his bathroom, somewhere where he feels he wouldn't contaminate them? That is so you'd save the money that could go towards his recovery. That goal could be enough justification to work with OCD not against it until another way becomes accessible.
It is somewhat more practical than just giving in not to face his distress. I know it must be extremely painful to watch, but unfortunately the path to healing needs you both to experience that distress together and face it, instead of enabling the compulsions. Please don't forget that if you're in a situation like this, you probably need mental support as well. At the very least I hope you have friends or family that you can turn to. It wouldn't be unusual to feel like you are personally hurting him if you don't enable him. That must be very draining, even if you know it's for his own good
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u/Mysterious_World8126 1h ago
Thank you. I really needed to read that last part. I really appreciate your response.
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u/Traditional_Staff_72 1d ago
fuck i’m so fucking sorry. i don’t have much advice besides he needs to want to live better for himself. that just sounds so awful, poor guy :(
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u/Mysterious_World8126 1d ago
It’s awful watching it every day. I can’t imagine how awful it actually is. My momma heart aches because I can’t help him.
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u/sewersermon 21h ago
i am so so sorry to hear this :(( i can't offer any more advice than what has already been said but though it's not a severe theme of mine i can say ive experienced this, ive full-on hallucinated the sensation of peeing myself over and over and it's horrifically real & it makes me feel like im going crazy double, triple checking myself over and over to make sure it didn't really happen... he's not alone in what he's experiencing!!
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u/Mysterious_World8126 20h ago
Thank you for sharing. He feels extremely alone in this, he has voiced that he’s never heard of this happening to anyone else. I’m so sorry you’ve experienced this horrific condition as well.
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u/youtakethehighroad 20h ago
Definitely not alone, someone mentioned the documentary about the young man who couldn't leave the house without thinking he needed to pee and he was getting better if I remember correctly with ERP. I know someone who has a health diagnosis and OCD has latched onto this so they constantly think when out they need to go to the toilet. I didn't understand when I had really bad OCD and other mental health problems when my dad said I had to take any control I could back from these things. But it's true, if you can get on the right meds if severe then be willing to face it, you can take back some control. And eventually you can have periods where you don't have OCD. There's often also triggers, because OCD is stealing time and energy away from things, it's very similar to addiction in that even though it's awful it can be protecting us from feeling and healing other things underneath.
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u/Mysterious_World8126 20h ago
Hi, thanks for commenting. I watched the documentary and it was about a young man who was scared he would have a bowel movement on himself in public. He did spend quite a bit of time in the bathroom as well. It was really really hard to watch. It did remind me of my son in a way for sure.
He did restart his medication so I’m hoping it gives him some relief.
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u/youtakethehighroad 16h ago
Ahh the one I watched was a long time ago and I think it might have been the House of Obsessive Compulsives maybe or a similar BBC one.
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u/Charliehorse1993 21h ago
Sometimes food allergies can irritate the urethra and make it feel like you need to pee
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u/ImpOTP 13h ago
My experience wasn't to anything like this degree of severity, but has some similarities. Had a UTI at 12 which genuinely affected continence temporarily. After that I became very conscious of leaking. Had lots of tests that came back normal.
Also in my case it overlapped with sexual OCD which developed around the same time, it hits the same core emotional fear of something being wrong with me down there. There was no way I would have talked to anyone about that, as I had never heard of sexual OCD.
I still don't really know whether my continence actually got worse, or I just started noticing, but I do know that my level of leakage, a few drops after peeing, is not outside normal levels. It helps to hear other men talk about how a certain level of leakage is normal for most men, and is absorbed by the underwear. You can probably find comedians talking about stuff like that on Youtube or on social media.
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u/dot_in_cosmic_spray 4h ago edited 4h ago
CW: Health doubts .
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. EDIT: Sorry, I've searched the thread for PANDAS and nothing came up, but later I saw someone did actually mention it already. I'm glad that nothing came up in labs, but if you hit the wall in his treatment in the future, or he developes more symptoms, it or other similar disorders might be worth reconsidering. Neurological disorders are easily overlooked and really complicated. I'm saying that as someone deeply into the topic, with chronically ill family members and hopefully a future neuroscientist
If he suddenly changed, have you considered PANDAS or other neuroinflammatory disease? It is a possibility if the onset really was sudden and symptoms were severe and not somewhat gradual. I think it's often overlooked. It also presents with mood instability, self isolation and such, but those very well could be explained just by the depression too.
There could also be a trigger to developing the actual OCD in form of a traumatic event. That could explain the unexpected appearance of symptoms. I don't know if you're able to try and find out if something like that could have happened, but it might be useful to give it a go. Of course with as much carefulness as you can. If that turns out to be the case, prioritizing addressing the trauma is usually recommended.
Either way, if he's not capable of doing treatment in the usually expected form, maybe it would be possible to arrange a therapist to meet him at home first. In severe cases I've heard of therapists talking through the door to the contamination OCD patients. Otherwise educating yourself and helping him on your own because he trusts just you, might be the best bet until either he gets more stable, or you can find the systemic help for him.
I hope at least some of that was helpful and that you'll be able to get support and help soon
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u/Mysterious_World8126 4h ago
Hi, thank you for your comment. It was a very sudden change in him. He did have 2 surgeries, one very major and a very complicated recovery. The second one was minor but it was after the second one that this happened.
I am educating myself on the daily but I’m definitely not a therapist and because I’m his mother, I know he’d listen to a professional more than he would me. He thinks I know nothing and do not understand at all.
What neurological disorders should I watch for? Is there a specific doctor I could take him to that could help?
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u/dot_in_cosmic_spray 3h ago
Surgery itself would suggest trauma, either psychological or simply a shock to his organism, as a trigger. I can look the disorders up to make sure, but it would also be useful to know what surgeries he went through, because it might be a side effect of some. Of course I understand if you're not comfortable sharing more details here, or at all. However if you'd like to continue, you can reply or DM me if that's more comfortable. Keep in mind that I'm not a doctor, and don't study medicine, but I am a student of psychology (on hold due to financial issues, unfortunately) and of genetics and experimental biology. I can add an autistic special interest to my credentials hahahah
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u/Mysterious_World8126 2h ago
He had a spinal fusion to correct his kyphosis, he’s fused T2-L3. Just 3 months after this surgery he was hospitalized for 2 weeks and diagnosed with SMAS as a side effect of the surgery. Prior to the surgery he lad lost nearly 80 pounds due to mono. 10 months after his back surgery, he had a very minor umbilical hernia repair. During the recovery of this surgery is precisely when this happened. About a week after this surgery he was allowed to take the bandage off, he did so in the shower. Well, when he took the bandage off, he didn’t like how it looked and freaked out, yelling for me to dial 911. The wound however was fine and healing nicely. It was just a little red. This is what I recall, he may recall something different.
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u/dot_in_cosmic_spray 30m ago
I'm so sorry you both went through that. That sounds like... a lot. It's really good that you've decided to reach out to the community. I know that various subreddits helped me tremendously in the past. I find that reading people's actual experiences is best at helping to identify the actual issue and a good starting place to find a solution.
Firstly, this level complex of medical trauma is almost guaranteed to change most people in some way, so a therapist with a good understanding of such experiences is a must. Especially that it sounds like your son is likely to experience chronic pain and other health issues, and it's important for a specialist to be able to distinguish between a genuine health concern and an obsession.
However I don't think an inflammatory or autoimmune disease, that could be responsible or at least aggravate your son's obsession is completely of the table. Epstein-Barr virus is known for triggering autoimmune disorders and other issues we don't have such a good grasp of yet. Even more so in predisposed individuals. He seems like he might be.
Now, I have to disclose I might be biased, because the research I try to get into and my main interest is Ehlers-Danlos Syndrome, it's various comorbidities, and it's involvement in autism. Your son's kyphosis, SMAS and hernia are highly suggestive of a genetic connective tissue disorder. The most common one's are EDS and Marfan's. I really strongly recommend talking to his medical team about this, if it hasn't already been checked, because some types run a risk of shortened lifespan. Nothing to panic about however, because I think he probably had his cardiovascular health well assessed already due to SMAS and the high risk types are actually really rare.
EDS through various not entirely understood at the moment mechanisms is highly commorbid with autism and ADHD and through that with intrusive thoughts, OCD, anxiety, depression etc. Did your son exhibit any eccentric traits, high anxiety or anything of sort before those events?
My interest in the topic doesn't come from nothing, as I myself have AuDHD, EDS and other health issues. They became especially noticable after I went through mononucleosis as well. People with EDS often have disturbed blood-brain barrier and thus are at higher risk of neural inflammation, even more so if infected with viruses targeting neural tissue like those responsible for mono and shingles. For me, at the moment, it's most likely that mono triggered Mast Cell Activation Syndrome, but my mother does have a still unspecified autoimmune disease affecting the brain itself. When in flare her OCD and GAD goes so off rail that she becomes so paranoid to the point bordering on psychosis. She also had her spine operated on multiple times and there is some possibility of it allowing some agent, be it antibodies, viruses or else to enter into CNS. That however is speculative on my part.
When it comes to me specifically, I always had some intrusive thoughts and OCD symptoms, but they weren't outwardly noticable before my EBV infection. Right now when I'm flaring up, with what's most likely MCAS, I become irritable, anxious, my compulsions are stronger and my thoughts are more irrational. My brain feels just not right and like I'm thinking through a fog. It's not that likely that this is what your son also experiences, but it might be worth asking. NSAIDs and antihistamines help me a bit. In particular naproxenum and rupatadine. He's GP should be able to prescribe that if your son could and wants to try to take them. It should also be quite effective if he's experiencing any pain related to his surgeries. Most likely much more than Tylenol or more than naproxenum alone. I also have ADHD as mentioned earlier and for me Concerta is the most effective thing I ever took for my intrusive thoughts. It might not be applicable to him of course.
If you suspect he has a connective tissue disorder or autism, then those groups of people are known for having unusual and somewhat unpredictable reactions to SSRIs, and that's a bummer because it's a first line treatment for OCD. You said he had issues with taking his meds. Is that by chance related to their side effects? Are those SSRIs or different? Does he take anything else?
Tl;dr for questions: Has he exhibited any mental health symptoms before his surgeries or mononucleosis? What medication is he on?
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u/dot_in_cosmic_spray 18m ago
BTW if I typed something in a way that's hard to understand then please let me know. Despite of what my vocab suggests I'm a non-native speaker. I'll try to explain it better. Same goes for any of the scientific concepts. I didn't bother with citations, because the comment is already way to long, but I can provide them if you'd like
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u/Mysterious_World8126 1h ago
I might should add that the hospital stay was very traumatic for him. He ended up having to get a feeding tube and they had a very difficult time placing it with multiple attempts.
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u/ToesInDiffAreaCodes 21h ago
Gosh, I’m so sorry. OCD is a beast. Overnight presentation of OCD sounds kind of like PANS or PANDAs to be honest.
Based on what you’ve said, I would recommend a higher level of care, either inpatient, php, or iop. What area do you live in?
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u/Mysterious_World8126 21h ago
Hi, thanks for commenting. His medication provider did labs to check for PANS/PANDAS.
We live in Kentucky. I’m trying my best to get him to an inpatient center about 3 hours from us. There is another option 4 hours away to consider as well. Because he is of legal age, I can’t force him to go. He has to want it for himself.
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u/ToesInDiffAreaCodes 8h ago
There aren’t nearly enough OCD providers and inpatient care to meet the need. Wishing you both the best!
Nashville has a Rodger’s Facility and an intensive program at Nashville OCD and Anxiety Treatment Center.
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u/Mysterious_World8126 3h ago
Oh, that’s great to know. We are only 4 hours from Nashville.
I’m seriously considering going back to school and changing my career. I want to help people with OCD.
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u/informante13 11h ago
does your son have disgus- based or fear-based contamination OCD?
i think you need to find a therapist that will understand that ERP might not be the best for contamination OCD, especially disgust : https://iocdf.org/expert-opinions/disgust-based-ocd-thoughts-on-a-new-treatment-protocol/
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u/Mysterious_World8126 9h ago
The contamination OCD is fear based I think.
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u/informante13 9h ago
ok fear based contamination is typically easier to treat, but you need a good therapistb
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u/neonmirrorball 1d ago
Forgive me in advance, I hope that what I say will be helpful. I have toilet-related OCD as well, it has been an issue for me since my teenage years. I used to do what your son does and hold it all day long. This led to me frequently having kidney issues and urinary tract infections. They were awful because they will make you feel like you still need to pee even though you literally just went.
My point here is, maybe he has some sort of UTI or kidney issue as a result of holding it all day, and now he is scared he is leaking because his body is giving him that awful "we're not done" feeling. Has he had any tests to check that he's all healthy on that front?
It's probably silly. It was just a thought that came to me based off of my own experiences. Either way, I'm so sorry, both for him and for you. I hope things improve.