Scared, in pain...Also hello!

[ComputerRepairGuy]

Hi all,

I'm a 27-yo male,work in IT, and have recently been having pain in my perineum for the past 2 weeks. It felt like it was going away after a week and a half, but then started hurting again recently.

Possible Cause:
This is what I believe to be the cause. About a month ago, I had a rather bad bout of constipation that caused me to push harder than usual. I've had IBS since I was 25, and occasionally waver between diarrhea and constipation. A few weeks later, I started having a dull pain in my perineum, accompanied with tinges in my bladder that made me feel like I had to pee immediately.

Symptoms:
- Wandering pain that can be anywhere from the outer portion of my anus, to the middle of my perineum, behind my scrotum or along the left side between my leg and testicles.
- Frequent need to urinate, sometimes accompanied with urgency. This is especially annoying since I commute via public transportation.
- Pain interfering with sleep. Some nights I can't sleep at all due to a strong pain sensation.
- Pain seems to worsen as my bowels fill with stool, and sometimes after having a bowel movement.

Last week the pain was so bad, I had to go to the ER to get it looked at. I was told there was nothing wrong, based on my vitals, a urine sample (which only said I was dehydrated), an STD test (negative), and a digital rectal exam. They hooked me to an IV with morphine, and the pain subsided. At the end of it, they made an appointment for my Gastroenterologist and discharged me.

Naturally, these symptoms have been distressing, and after copious amounts of googling symptoms, I found that perineum pain/pudendal nerve pain matched what I was feeling.

This is by far the worst ailment I've been afflicted with, and I'm scared that I won't ever improve. I'm approaching my third week of feeling like this, and between the pain, the sleeplessness, and now the lack of sick leave from my job, I feel like I'm coming apart. If not for my caring husband and parents, I feel like I would be completely depressed.

Here's what I'm considering at the moment. I'm going to set up an appointment with a urologist as soon as possible (I think this is the right type of doctor I should start with?) and tell them my symptoms and what I believe it is. After looking through PudendalHope's dr's list, I was also considering going to the Dellon Institute since it's about an hours drive away from me. I want to see as few doctors as possible, since I don't want to suffer any longer than I have to.

In the meantime, I'm trying to work on pain management. I've been alternating between gel ice packs and a heating pad, I take a sitz bath everyday, and I've been popping Advil whenever I can.

Things I can still do:
Maintain an erection/masturbate without pain (though I'm trying to limit this out of fear that I'm going to make it worse)
Sit down. The pain doesn't worsen with sitting or standing, but once triggered from a bowel movement, it stays regardless of which I do

To all of you who have been dealing with this horrid condition, does my plan of action sound like it makes sense? What should I consider doing for pain management? Would ice or heat work better for the affected area? And how long should I give myself before I consider surgery?

[Violet M]

Well, Dr. Dellon is a surgeon and when you go to a surgeon they think in terms of fixing you with surgery. I suppose if you are looking for a diagnosis he might be able to give you that but after only 3 weeks you have a bunch of other options you could try before even thinking about surgery.

Check out the treatment options in the left hand menu on the homepage at pudendalhope.org and the flyer on the homepage. There are additional ideas you can get from reading the forum such as restorative exercise or the mindbody approach that might be helpful but since your problems seem to be associated with constipation you need to get the constipation/IBS under control and avoid having to strain. There are lots of suggestions for avoiding constipation at this link: http://www.pudendalhope.info/node/32 or maybe your GI doc will have some recommendations for you.

If you have a back-up of stool in your bowel you can still get diarrhea from leakage of stool around the hardened stool. They can probably tell from an x-ray whether you have stool back-up that needs to be cleaned out via meds or enema.

Good luck,

Violet

[ComputerRepairGuy]

Had an appointment with a Urologist yesterday. I had read on this site from a few people that they would be quick to diagnose Prostatitis, and sure enough that's what happened here.

Aside from the urinary urgency, I mentioned that the symptoms were pain in my perineum that happened shortly after I was straining to use the restroom, as well as feelings of muscle pain or pinched nerves along the middle to left side of the perineum and going up between my scrotum and left leg.

He checked my urine and prostate, said both looked fine, but that he wanted to treat me with a 3 week course of antibiotics as a preventative measure.

Honestly, I'm not so sure I should fill it. I have an appointment with a gastroenterologist next week, and should he recommend antibiotics for my IBS/SIBO condition, I don't want/don't think I can be on both at the same time.
Plus, my symptoms have started to subside somewhat. I no longer need pain meds, I'm relying on my ice packs less and less, I can sit for longer periods without a feeling of discomfort, and the strong tinges of pain/discomfort that caused an immediate need to urinate have gone.

I've been watching what I eat and have been avoiding straining on the toilet. At this point, I don't think I have anything as severe as PNE, but am still concerned that I may have some nerve damage. I still can't sleep fully during the night sometimes, as I wake up feeling like I need to pee, even if it's only a little. This usually coincides with my colon being full of stool or gas.

Has anyone who has overexerted those nerves/muscles ever recovered with just conservative methods/waiting it out?

[solarmom]

Hi
I think it is a positive sign that the pain has
subsided somewhat. if you believe that it started with the
constipation it could be muscle tension in the anal sphincter
that radiates forward to the perineum etc. You
may want to find a pelvic floor therapist to
assess muscle tension in the levator ani and ask
the gi doc if there are positions to avoid muscle strain
during bm.

[ComputerRepairGuy]

Hi solarmom

Thanks for the advice! I've got an appointment with a gastroenterologist on Tuesday, so I've got those and a few other questions lined up for him.

I have actually been prone to random pains around my anus for most of my life. For a brief period, I thought I might have had Levator Ani Syndrome as the pain started becoming more frequent about 3 years ago before it disappeared 2 years ago. I've also had anal fissures in the past, but fortunately those have subsided through conservative treatment.

[Violet M]

In answer to your questions, some people get significant improvements just from lifestyle changes so hopefully that will be the case for you. You may have to be careful indefinitely though because what caused this initial flare-up could happen again unless you maintain the lifestyle changes. At least that is what I've heard from other people.

Violet

[ComputerRepairGuy]

I decided to take the antibiotics that the Urologist prescribed to me. I still think his diagnosis was wrong since it doesn't match up exactly with my symptoms or his findings, but I figured I might as well not delay the "ruling out" phase of this any longer if I indeed do have some form of pudendal neuralgia. I hate having to go on yet another antibiotic (I've taken several courses in the past for Small Intestine Bacterial Overgrowth), but I'm out of options until I can get more sick leave to find the appropriate doctor for this. I was given Trimethoprim 100mg 2/day for 2 weeks.

I'm also wondering if this condition can present differently for some people, as I see "pain with the inability to sit" as a common symptom and signifier of this malady. The main problem I'm experiencing is the frequent urge to urinate. I've described the trigger for it as "pain", but it's more of an irritation or a warm sensation that tinges from a specific spot along my perenium or pelvic area. Have many people here presented in this way?

I'm now about 1 1/2 to 2 months into this. I feel like I've made improvements, but still get the feeling that I could take two steps back if I'm not careful. Still using Ice whenever possible and warm Epson Salt baths daily.

Current feeling: Even though I just emptied my bladder, there a slight irritation along the underside of my left leg, near my left buttock, and at the root of my penis that is irritating my bladder. Really wishing there was an off switch for this.

[April]

CRG,

I think it does make sense to rule out everything else, especially if your symptoms aren't entirely typical. I haven't had the bladder issues you describe (although it burns somewhat when I urinate and I think I urinate frequently), but I do think there is variability in how this presents. I have almost every primary and secondary symptom on the pn symptom list except that I can usually sit without immediate pain. It sounds like you are looking for a pn doctor. I think that also makes a lot of sense.

April

[Violet M]

Frequent urge to urinate can be one of the symptoms of PN. I've had it at times. You might find a tricyclic or SSRI antidepressant helpful in dampening the symptom. I had about 75% relief of this symptom using antidepressants.

Violet

[ComputerRepairGuy]

Hi Violet,

Thanks for the advise. I've felt a definite improvement in my symptoms over the last month, including a lessening of the urgency feeling. It's still present, but it doesn't feel as severe as it did a month ago. I haven't had to use ice packs while sitting at work or at night in bed for the past couple weeks. I've mostly been focusing on eating better so I don't strain on the toilet, and continue to use epsom salt baths when I get home from work. I'm also trying to regulate my urinating to try and get it back into a feeling of normalcy.

I've read that recovering from nerve damage/stretch injury can take several months, so I'm focusing on tracking any changes I go through each month. Now that it's October, I'm about 2 1/2 months into this, and will try waiting it out another 3-4 months to see if there is any major improvement. After that point, I may consider seeing a specialist for medication to better regulate it. Overall, I'm cautiously optimistic.

Mentally, I've talked myself down from the PNE self-diagnosis, as the primary symptom of "pain while sitting" hasn't been an issue for me. If this does get worse or persists, I plan on tracking down one of the doctors from the Doctor list on this site, most likely Dr. Richard Marvel as he is the closest to me.