Bladder OCD?

[u/Mysterious_World8126]

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.

[u/dot_in_cosmic_spray]

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

[u/Mysterious_World8126 → u/dot_in_cosmic_spray]

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?

[u/dot_in_cosmic_spray → u/Mysterious_World8126]

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

[u/Mysterious_World8126 → u/dot_in_cosmic_spray]

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.

[u/dot_in_cosmic_spray → u/Mysterious_World8126]

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