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Pelvic/tailbone pain with Incontinence, my journey thus far

Nov 17, 2016 10:55 AM

I awake every morning, if i'm lucky to get sleep. I get up to shower right away because 9/10 i have wet myself overnight, completely soaked. After I shower, i dry off well, air dry a bit. Then i need to apply a barrier cream before I fight and fuss over taping an adult diaper on, pulling on a cover over the diaper for added protection if I leave the house, because I have bladder problems where I do not feel pressure most the time to have to ‘go’


Every day it is different. Some days i am in pain but can manage to do small tasks, like laundry or moderate cleaning. On my bad days I can't seem to do anything, but lie in bed on my right side. I can’t lay on my back because i feel like pain stems from the tailbone, down into my genital area spreading into my thighs. My left knee screams with pain, but now as bad as what I have come to know as the the pudendal nerve area. That cluster nerve stemming from the tailbone, over the rectal area over to the genitals. Most of the time I have pains in my genitals. It’s hit or miss when I become intimate, getting sharp stabbing pains that shoot up my penis that seem to come from the rectal area. More often these days my legs get really weak and i experience numbness and tingling in my left leg and foot and I lose balance and fall. A couple times if feel like my foot and/or toes fall asleep and get tingly and slightly pained. There have been a couples times I have fallen, hurting other parts of my body in the process. I have torn my right arm catching myself, I have hit my head twice in the past 6 months.


These day to day pains can leave me powerless on their own. Not being able to walk down the stairs, bend, crouch, twist. The simple walking more than 10 minutes can be difficult. Sitting at a table (or computer) gets painful for more that 10 minutes at a time. I have tried home remedies such as heat, cold packs. Sitting on a towel rolled up in a horseshoe. If it's not the pain from what seems to be the tailbone are, it's the pain from pressure on the inside of my thighs. Seems like the only go to spot to try to ease the pain, is laying in bed in the fetal position on my right side with a pillow between my knees.


Since the hit and run accident I had the pains and problems have gotten worse. It started out as the usual ache after I initially healed. Then the sharp pains started after long work days, until I had days where i couldn't even work. Along with these pains, a problem i dealt with back in my 20’s hit me hard. I had bladder control problems. A step back, in my 20’s a had a mild stroke due to blood pressure problems, during then i had light to mild incontinence, but eventually went away.


Today, i can't even hold my bladder very well. On top of that there are mornings or days when and it seems like i had anal leaks, minor at that. This is more on those days where i suffer with diarrhea or looser stools. I have gone from using underwear pads catching light drips , full on wearing protection 24/7.


The pains i suffer affect my intimate life. Like I stated before, it is hit or miss. On the “hit” days during intimacy i have a dull pain but a very sharp pain that radiates from between the legs, tailbone area and legs, when I ejaculate. This has caused problems in my life as you can imagine.


Treatments I have had over all have ranged from a rainbow of pain meds such as Tramadol and Norco, along with heavy Ibuprofen intermixed with muscle relaxers like Cyclobenzaprine. The pain was so bad a couple times I had to go to the E.R. where they administered a steroid,Decadron, and a pain killer Dilaudid.


As for my bladder problems, I have gone through so many medications that didn't seem to help or slow it down. Finally in the end, i have prescription diapers through medicaid, in which the quality is poor, and am needing to sacrifice one good diaper/brief to double up another. The intensity of the incontinence requires i have a better level or protection which I would have to pay out of pocket for a slightly better absorbing style. On top of my incontinence, earlier this year I was told that I had the beginning stages of bladder cancer. At the time I was incarcerated seeing a doctor where i had a procedure done to remove parts of the cancer after complaining about severe bladder pains. Now, seeing a new urologist inside Dupage medical group, they are having problems locating that file for the diagnosis or the procedure. As of this date, there is no sign of the cancer as of yet, but i still get stabbing pains in the bladder area along with blood in the urine. Each time telling my urologist, only to get a checkup done 3 weeks later when the symptoms have already been long gone and the urine clean of blood.


Living with these problems and constant pain has taken a serious toll on my mental health. I didn't see it before, but it has left me in depression. I don't feel like the man I used to be. Some days i feel worthless, incompetent, and just flat out a waste. My wife keeps me on the sane side. I am in no way suicidal. I am a firm believer of “There is always another way”. So this is me, dealing with these pains and problems, struggling to find that “other way” hoping one good doctor can find it with me. I feel every day that the doctors think I am crazy and I am lying. I have the support of my family and my wife, so that should be enough for me, but the fact that I can’t seem to get a definite diagnosis and my chart seems to stay open is really hitting me hard. I have sleep problems due to pain and stress. I not only have my health to worry about but that of my wife, who has her own full chart of things. We are striving to better ourselves but it seems like we keep getting kicked in the “medical problem hole” all the time.

Nov 17, 2016 3:59 PM

Deiveron, I'm so sorry to hear what all you have gone through, and still suffering. I'm female and have had many female related surgeries, the last in 2010 that encompassed 5 separate procedures during the one surgery. Since then I've developed pelvic congestion syndrome (varicose veins in pelvis, causes leg & groin pain), pelvic floor dysfunction (causes bladder, bowel & sexual dysfunction), and incontinence as well as most recently the inability to completely void my urine (severe retention). Like you it has weighed very heavily on me mentally. I wear either pads in my underclothes or depends diapers too. I just take it one day at a time.

Check with your doctor about possible pelvic floor dysfunction, as it can cause severe floor muscles to spasm (I've been doubled over crying uncontrollably). Also look into spinal disc impinging on nerves, if they haven't checked already. Also, pelvic congested veins, though mostly affecting women, can occur in men, and must be diagnosed by a MRI with dye. Having any pelvic surgery can cause PCS. I received trigger point injections into pelvic muscles last year, which helped a lot with reducing the muscle spasms I would get from front to back & side to side. Maybe something like that could help you. Sending you hugs love & prayers you'll find out the cause of the added painful symptoms, and get ways to help reduce them! 🙂💕🙏🌸

Nov 17, 2016 4:25 PM

I've been tested for almost everything. I'm in phys therapy for leg weakness. After that she wants to see about another therapist to retrain the bladder. Problem is I don't feel the pressure to go anymore.

Nov 17, 2016 9:03 PM

Deiveron, I think you and I share the same disease, called Tarlov Cysts. These are cysts that form on the nerve roots, mostly in the S region and tailbone. I have every symptom you have. Most docs don't tell you about these cysts because they assume they don't cause problems. I am coming off 2 year since I finally found a doc that knew that they do cause, pain, numbness, gential bee stings, incontinence, uti, bowel issues, then they can progress to loss of mobility. The best way to know if you have them is with a mri of the s and tailbone region. They have several different names, but if you look up the Tarlov Cysts there are 2 good pages; one for the foundation and another for Dr Feigenbaulm. I'll be here if you need any help. I belong to several support groups for this.

Nov 17, 2016 9:07 PM

My MRI showed nothing

Nov 17, 2016 9:28 PM

If you have a copy of it look for white mass and hopefully you have a copy of the written report, most radiologist do not note them. If had not demanded my neurologist show me the images and had not asked what those things are in my spine I would not have kknown

Nov 19, 2016 12:50 PM

Its amazing. i was doing my own research and found a site for Pelvic pain, Perineum pain and almost all the symptoms i have. i tell the doctor and i get the "oh i dont believe it is that" crap. i think im going to see another opinion.
http://www.pelvicpainhelp.com/perineum-pain/

Nov 20, 2016 8:52 AM

Did they check for Cauda Equina Syndrome??

Nov 23, 2016 9:07 AM

Lately my 2 smaller toes go numb when I get the pain. I'm not diabetic so it's not that

Nov 23, 2016 9:09 AM

My physical therapist believes it may not be the spine, but in fact the perineum nerve area affecting the nerves on the tailbone, she is discussing it with my pain specialist.

Dec 01, 2016 1:38 PM

an update on current events. I woke up today with my left leg hurting a lot and i could not move it for a good half hour. It was not asleep, i couldnt spread my left leg or bend it at the knee or hip.

Dec 01, 2016 8:43 PM

Did you have PT in the last day or two?

Dec 01, 2016 8:50 PM

Each time I had pT I had severe pain in the lower back and loss of the legs.

Dec 01, 2016 8:52 PM

Had mine last Monday. I was fine until this past monday

Dec 01, 2016 8:57 PM

With the Tarlovs, the only PT that helps is water. So I gave up on it, besides the therapist have no idea the amount of damage they were doing to me until they looked at the second mri.

Dec 03, 2016 1:44 PM

How are you feeling now? What have they told you?

Dec 03, 2016 1:57 PM

Deiveron, I have the same toe numbness when in pain. I am diabetic but they have confirmed it is unrelated to that.

Dec 04, 2016 5:01 PM

Another MRI and more phys therapy. No more injections. Gabapentin does nothing. They stopped my Norco.

Dec 04, 2016 10:29 PM

You poor thing. I'll be praying for you & your wife.

Dec 06, 2016 7:55 AM

Deiveron I admire how positive and open you are in such testing and painful circumstances. If you are able to get a second opinion do so. Have an MRI at the best place. Not all machines produce the same quality. My specialists tossed the Mri's in the trash and sent me to the Mri place they trust. It's good to know you aren't alone in your symptoms here which might help with finding a dx.

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