PTSD and Incontinence

Off-topic
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Howdy,

I found this forum today and read through a bit of the IC discussions. I was searching for people who might understand where I am coming from and may be able to offer some advice.

I am a nearly 40 year old female. Due to an assault that took place when I was 10 years old and a lack of serious treatment, I developed PTSD. I have been in intense therapy working on processing these issues for the past few years. The PTSD still leaves me with residual flashbacks, body memories, and nightmares that lead to bedwetting.

I also suffer from OAB and an abdomen full of scar tissue (from a ruptured appendix at 8). The scar tissue has stuck my bladder to other organs and will tug and pull. I have good days and bad days. It as though my issues ebb and flow. It can be effected by my general health and cycles, and has worsened over the years. I can have a nearly dry week, with minor key-in-latch leaks, and stress leaks, and the next, I can have several more serious accidents in a short period of time. Not predictable - but the quarantine has let me retain my dignity, as my accidents have happened at home.

2020 has been rough for humanity. Not looking to get political, but news and videos of the unrest that has been engulfing my country (the US) has caused my PTSD to flare up. I was dry-ish for months (no wetting while asleep, but a good soaking or two on the way to the toilet after waking up). The nightmares have returned with a vengeance, and with them, the bedwetting. Waking soaked and terrified keeps me stuck in the nightmare. It is like my body remembers when I wet myself in abject terror during the attack or when I woke in a wet bed, terrified that my parents will find out that I wet “because I was far too old to still be having accidents.”

My partner is really understanding, but I feel awful making him lose sleep. I am embarrassed that I keep going back to those moments that hurt so badly. Bedwetting leaves me feeling so very confused. It is easier when I am not stuck in a flashback. Nights that I wet and not have a nightmare I can chalk that up to OAB, but the PTSD is making things so much worse.

Most of this was venting, but I am curious how other people handle incontinence that is caused or exacerbated by PTSD.

-hoimi

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I’m so sorry your having all these issues. You’ve really been through the wringer, and nobody deserves all that.

I don’t have PTSD, so I’ll leave the discussion of that too those who know more about it. Many of your other issues with OAB are very similar to some of my problems. I can commiserate with the frustration of wing when you put the key in the lock, and the frustration of having so much variability in symptoms. I’ll have dry days for as long as a couple of weeks, then suddenly be back to having wet days.

The most important thing to do is talk it over with your doctor. The adhesions from scary tissue may be bad enough that they should be surgically corrected, and your other symptoms should be looked at for potential treatment options. There are meds, neurostimulation, and behavioral approaches that can ask help to some extent.

It sounds like your partner is wonderful. Speaking as a partner of someone who deals with severe anxiety, nightmares, and sleep paralysis, don’t worry to much about him losing sleep. When you love and care about somebody, that becomes the most important thing, and losing a little sleep is just not the big issue.

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Thanks for the reply!

Adhesions are a tricky devil, because they are caused by surgery - and fixed by more surgery, which can start the cycle anew. Back when I had my ruptured appendix surgery (late 80s), I was lucky to have survived the experience. Today, surgery options are greater, but I have spoken to many doctors and not one of them recommends non-life saving surgery for me again. The adhesions themselves have become part of my normal, but they have ways of making themselves known. I have to carefully regulate my fibre intake and watch the things that can constipate me, as it can cause intestinal blockages. When the guts are upset, the bladder often follows suit.

Last night wasn’t the worst, but I don’t know when I’ll be triggered next. Hypervigilance is a pain. I keep thinking that I need to sleep in the other room one night, so he can catch up on sleep…

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I’ll try not to be one sided when it comes to ptsd and incontinence, so here it goes I was diagnosed with ptsd while still in the military(army) in 2002 and didn’t have wetting problems until 2010 when the night terrors started back up and I was reliving what I encountered in service I lost all bladder control without any warning and started seeing a therapist along with my psychiatrist we were able to get control of my emotional stability the accidents stopped but was still have occasional flashbacks and nightmares. My incontinence now stems from a medical mistake. I was prescribed medication for the ptsd and the mood swings from it along with sleep medication. I hope that helps I can only say what worked for me it may or may not work for you I hope you can recover some normalcy of life, hold on and keep your head above water

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Thanks, @jasonm03 !

I had been working on some of the harder issues with my assault over the past few years, and it has brought a lot of unresolved feelings to the surface. I think I am more prone to accidents because of my OAB issues getting worse, and coupling it with the recent increase of being triggered.

I am between psychiatrists, because my last one was not worth my time - as it appeared that every session, I was not worth his. My therapist, however, is amazing. She is trained in trauma therapy and works on body memories. The lousy thing was that she was unable to do a televisit with me this week. It is hard for me to shake the nightmare, and it can ruin my day before it starts.

I am on Cymbalta for depression, Buspar (which isn’t doing much) for generalized anxiety, and I have very little Valium left, and will only use it if I am having a panic attack. I don’t know that I want to take things that have severe side effects (been there, done that). I also enjoy the comfort and protection of diapers. If I could just have that feeling, and stop having nightmares and flashbacks, that’d be great.

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I feel your pain. I have mental health issues and politics and the news cycle and lock down has been bad for me. I do zoom meetings with my psychiatrist weekly to help me stay out of the hospital. Im diapered 24/7 so I dont know if bedwetting or leaking is getting worse for me, since I dont use the potty anyway.

What do you find helps with the panic attacks and depression cycle that comes with ptsd? I use medication, vitamin supplements and exercise to try and keep stable.

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I don’t like to rely on meds, as I am between psychiatrists right now and my Valium are dwindling. However, there are times that I need something to cut the edge, as I really don’t want to have a panic attack.

I did a full run of a treatment called TMS, which was interesting. They put you in a skin-tight swimming cap, and use high powered magnets to blast certain areas of the brain. It was like fast repeated knocking on my skull, like a woodpecker. I did it for something like five months. I have to say, either it really helped, or I am all about Placebos.

I do tele-health meetings with my therapist weekly, but she had another engagement last week - and I could have used a good session. She is focussed on trauma therapy and does work on body memories. If you do not see a trauma specialist, I highly recommend looking into it. Most therapists want you to succeed in finding peace of mind. If your therapy is stagnated or you just find that you are going in circles, it is worth asking about what options that your therapist recommends. I left a therapist that I loved, but it was worth it. We are making progress, even if the bad times feel like we aren’t.

I have been trying to avoid all of the sad that I can and just fill my brain with either mellow or slap-happy. The news is never a good thing. Even if they have a lighthearted story, the world is sinking into Tartarus, and everything is so very political. There is nothing wrong with stepping away from social media, or turning off the news if it is triggering you. I had to leave FaceBook again. The stress is not worth it. Twitter can be a cesspool So I only take that in when I am totally ready for the madness. My Reddit is filled with adorable subreddits; cats that squeak, guinea pigs, Animal Crossing… There are still good things in the world. They are silly animals.

I have to do some serious grounding right after a nightmare, but it often doesn’t really work in a soaked diaper, because my body remembers. My husband is great about it, but I feel awful when I wake him up. He says that I don’t cry out in my sleep, but the motion can wake him up. The thing is, I really need him in that moment. He can bring me back pretty quick and he always helps me clean up.

I have been working to control what I can in my life. There are things that I have no chance of controlling. I celebrate the little accomplishments, like keeping the kitchen tidy, or today, I cleaned the heck out of our deck. (This weekend, I shall harness the might of the power-washer.) I have also been using an app that my therapist recommended a while back called Daylio. It is a micro journal. You can just put something like BAD - Poor Sleep - Nightmare. You can create as many daily logs as you need. I’ve been using it to track my nightmares, and as a really vague void diary. Unfortunately, the app went from free to a subscription. However, journaling can be beneficial, if that is your thing.

The thing is bad days are going to happen. Sometimes, it is going to be harder to break free of the grasp that the past has on us. We don’t get over things. We get through them.

I wish you peace. Try to enjoy the things you can. Let the joy you find in the little things be a balm for your soul. Like birdwatching, reading a funny comic strip, the smell of your favourite drink, a good game, or the daydream that takes you away from reality.

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Very good advice, thank you. One of my Drs recommended the magnetic therapy to me and I declined. I declined because the therapy I am presently doing is helping me. I have tried many options presented to me including electro convulsive therapy and psilocybin therapy. I have found both to have positive effects, although the electro convulsive therapy gave me nerve damage in my brain so I discontinued it.

Never giving up, forgiving myself when I lose control and my wife and family are the biggest support factors in my life.

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I am totally interested in psilocybin therapy, but ECT scares me. I know someone who went through it and suffered from memory loss following.

WARNING: Dark Waters Ahead.

The depression is so much better than before, but I kind of feel like I might be starting back down that path. It might also be a reaction to reality being so dark. My ongoing health and psych issues caused me to leave a job I had for five years, right before the lockdown. I miss my co-workers and leaving feels like a total failure on my part. It is like I have given in, instead of fighting.

There is a song, by the band Rilo Kiley called A Better Son/Daughter that has a line that goes:

And sometimes when you’re on, you’re really ******* on

And your friends they sing along and they love you.

But the lows are so extreme that the good seems ******* cheap

And it teases you for weeks in its absence.

That song is my jam. There are times that I can rise above the demons that want to hold me down. I can be genuine and who I want to always be. Bu then… There are times that the nightmares infect the daylight and I can’t break free no matter how hard I try. And then there are days, that I just don’t try.

I feel like a failure - like that one incident has completely shifted who I was meant to be. In some alternate reality, I am this fully actualised person, able to use my powers for good… Instead of letting them go to waste. I’ve been fighting that one diversion for thirty years. I deserve peace, but instead I keep thinking about justice. I want to let my parents know how much they hurt me - and part of me wants them to feel horrible about it.

I had repressed the actual severity of the attack. I remembered around the event, but not the deepest trauma. I dealt with this feeling that I was missing time and that there was a black hole in my mind. After years of work with therapists, I remembered everything. It was cathartic at the time, but then I had to work to deal with that horrible moment.

I went to my parents, to tell them that I remembered, and honestly, I was seeking their support. My dad said, ‘This means one of two things, hoimi. Either it happened, and you can finally get over it. Or you made it up, and you can stay crazy.’ What human says that?! I get that I laid a seriously heavy load on him, but I’d been dealing with the trauma - without his support - for way too long. It has not been mentioned since.

Do you deal with the feelings that you deserve justice or something from what caused you your pain?

I think I am getting really deep in my head. I have therapy tomorrow. I might also seek out support elsewhere, as I don’t want to ask for help by triggering you.

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ECT can be lifesaving when it’s the only thing left to try, but it’s very hard to deal with the memory effects. I managed to stay working full time while going through a course of 24 treatments, most of them the bilateral ones that have a greater impact on memories, but only because I was working for an incredibly caring and generous boss at the time. I remember having to get directions to a job site where is been many times before, and I don’t know how many memory lapses I had that I don’t remember.

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I have had the same effect. I dont remember what I dont remember, so it doesnt really bother me. I have not yet been told about something important that I have forgotten, honestly it’s mostly been movies or tv shows or other trivial things. ECT has saved my life, but like you say, it’s a last option. I have had memory loss and nerve damage as a result of ECT.

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This type of therapy I don’t take lightly. It’s like a sledgehammer, and it will change you. You need someone to guide you through the process and you need a lot of therapy beforehand, so you understand yourself.

Words alone don’t do the experience and healing benefit justice. If you use this medicine, please be safe. Depending on where you live, it may be illegal and so obtaining good psilocybin can be dangerous for multiple reasons. If you decide to take this route, I fully recommend growing your own. PM me if you would like a link to a very good resource on growing safely.

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I suffer from severe chronic cluster headaches and had people constantly telling me I needed to use psilocybin to get them under control. I refused, given that it’s not only illegal here, but also since I am the sole wage earner in our household and work a demanding job as an electronics engineer.

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Thank you for sharing you experiences. I am helped by reading them.

 [@hoimi](https://www.adisc.org/forum/members/52528/), does your work with body memories include anything like EMDR,  *Eye Movement Desensitization and Reprocessing*? It has been found to be particularly effective with PTSD.  Both my wife and I feel we have benefited significantly from this technique.  My wife also feels she as benefited from TMS.

 From what I've come to know first hand of the body-mind-spirit relationship, I cannot condone "therapies" as violent and destructive of the brain tissue as ECT.  I, too, have heard horror stories from a friend given this.
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@AnalogRTO - I get migraines and I often think of boring a hole into the side of my skull to let the pain out. Fortunately, my husband has locked up the power tools. Also, I know that it wouldn’t work to relieve the pain, but there are times that the pain is so bad, that I’d do it, if it meant I’d never have another migraine.

I am so sorry that you have cluster headaches. I know that migraines are terrible. I can’t imagine dealing with a cluster. I thought that I had a high pain threshold, but golly, I have heard that those are hell.

@peeboy I have’s tried EMDR, but I had a friend who benefitted from it. I just do body memory work with my trauma specialist. Today’s session was really rough. It is really hard when to get over something, you have to move through it. -57/10, Would not recommend.

TMS was fine, but expensive, and I was super sad that I didn’t get to keep the skin-tight Velcro cap! It was just asking for cosplay, or those fun velcro patches.

I am glad that I live in an era where therapy is more accessible, more effective treatment options are available, and the stigma of metal health is shifting toward the better. I don’t know that I would have survived the past twenty years without therapy.

Now, if my body and my brain would get on the same page - and stop giving me flashbacks, that’d be great.

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Whew…

You’ve certainly been through more than your fair share of pain. I’m very sorry to hear you’re still enduring the flashbacks/side effects.

I doubt most folks truly appreciated the connection our mind/soul has on our body/physiology. Most people know what it’s like to feel stressed/afraid/angry: increase in heart rate, heartburn perhaps, sweating, trembling/shaking. All that fun stuff. :frowning:

PTSD is a diabolical condition. Flashbacks can happen at any time, and knowing what triggers them is key to handling and then overcoming the problem(s). Hopefully your ‘T’ (Therapist), will be able to help and cure this.

When my plumbing first began causing accidents, it was while sleeping. I still don’t know if it was the nightmares/flashbacks causing the I.C., or if by having an ‘Accident’ caused the bad dreams/flashbacks? Sort of like a dog chasing and catching its own tail, spinning in circles. I’d already been facing and struggling with PTSD/Severe Depression issues prior to my plumbing starting its antics. I finally discovered what was causing that, and in truth facing and dealing with the bad memories helps me control the PTSD/Depression/Flashbacks to a fair degree. Now it’s usually something that startles me, or a particularly bad nightmare/memory that’ll see me reduced to a quivering wreck.

I wish you all the best in your Healing.

Welcome to ADISC and all the good peeps here that are more than happy to listen/offer support!

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ECT is not as violent and destructive as the other alternatives that I was considering at the time I started ECT. It is generally the treatment of last resort, and had I not had ECT, I’d be dead. You can condone it or condemn it, but for me it made the difference between life and death.

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Was the medical mistake your incontinence stems from the cocktail of meds prescribed or was it a botched procedure?

I understand if you’d prefer not to answer.

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Please let’s not start a religious war. The only alternatives I can concede more violent and destructive than ECT are frontal lobotomies and transorbital lukeotomies. Chemical straight jackets like Haldol can be pretty damaging, too. Consider the people who held your same conviction about their bloodletting, which kept that similarly misguided “treatment” all the rage for so long. But your truth is true for you. What’s true for me is talk therapy, when done right, within exacting constraints and with all the required ancillary support, can pull anyone out of a mentally caused life or death crises. Brain is not mind. But damage the brain and it sure can impair mind-body connections.

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Hi, PTSD is a very debilitating condition. I Have been coping with it since I was 22 now 60. Back then I was disemboweled in a timber mill accident and had to walk 25 meters to get help while holding my bowel in one hand and trying to stop the bleeding with the other. Sometime later my appendix grew into my liver requiring further surgery. I have had a shotgun pointed at my head and intervened in what would have been a deadly assault. I also found a dead body once that had been deceased for 8 days in the middle of summer. I mention this because of the imagery that is involved with PTSD and when you relive those events in your sleep. Yes, negative things on media do make it worse. Also do noisy opinionated people. I tried meds, many things and what really helped me was Cognitive Behaviour Therapy. It is amazing. You remember the good things you had forgotten and learn to focus so you are in control of your trauma not the other way around. I wish you all the best.

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