almost 2 years, still burn!

[ddt1974]

It's almost 2 years and I still burn in my urethra. Not constant, but a good 70 % of the time with varying intensity. Managing with Xanax and advil.

[webslave]

Look at it differently: what haven't you tried?

[CppsDad]

Are you doing any PT externally or internally, self-administered or through a professional?

Mike

[jonestpauper]

My 5yr. burn is in my urethra, prostate, and pelvic floor muscles 24/7 at a level 6 out of 10 being the worst.

Been through 6 Military and 3 Civilian Urologists. Same answers.

Been through various pain-killers and the antibiotics that don't work at all, oh, and also the anti-depressant that really screws up your bodies network, if you will!.

Currently seeing pain clinic, acupuncturist,physical therapist, and psychologist at local Veterans Administration Hospital.

For self: Daily Exercising/Stretching/Yoga/Jacuzzi/Meditation/Prayer


Sincerely Praying for us all,
Tony

[LightningTree]

Hey guys, I have some basic questions for you. Sorry if these sound stupid, but they are important from my mortal perspective and might help me better understand where you are coming from:

1) Are your symptoms less when you first wake up in the morning?

2)Do either of you sit or had sat frequently or for long durations?

3)Have either of you taken antidepressents for more than a few months in a row since your pain started?

4)Do either of you have symptoms of extreme anxiety?

5)Have you talked to a physical therapist specifically about detecting rectal/pelvic muscle tension and gotten feedback from the physical therapist through digital exam (Stanford method) or some other means?

[ddt1974]

1) Are your symptoms less when you first wake up in the morning?

Yes, but I take a 1mg Xanax before bed daily, so that might be why it's less in the morning.

2)Do either of you sit or had sat frequently or for long durations?

Yes.

3)Have either of you taken antidepressents for more than a few months in a row since your pain started?

I take one now, Celexa.

4)Do either of you have symptoms of extreme anxiety?

Not as long as I'm on my SSRI. Without it, yes.

5)Have you talked to a physical therapist specifically about detecting rectal/pelvic muscle tension and gotten feedback from the physical therapist through digital exam (Stanford method) or some other means?

My sister was diagnosed with interstitial cystitis 8 years ago.
I've had a full cystoscopy, normal results. Prostate normal. Urine normal. I have seen a urologist who stuck her finger in my anus, and felt all the different directions and asked me if it hurt. It only hurt when she first shoved her finger in there, it felt like a sharp tearing, but once that calmed down, there was no pain when she pressed the different directions. She recommended physical therapy. I haven't sheduled an appointment cause I don't want people shoving their fingers in there. I am going to try and get on a daily dosage of klonopin .5mg 2x a day, indefinitely, to treat the burning, most likely through a psychiatrist. I am doing stretching that I see in the headache in the pelvis book nightly, (any links or info about different stretches appreciated). The stretching makes the pain less for about a half hour. Thanks, Dennis

[LightningTree]

Hey Dennis,

Thanks for the responses to my questions. That gives me a better understanding of where you are coming from. I'm just another sufferer who is currently doing better, so I can at least offer you advise based on what I did (1.5 years to moderate remission.) Keep in mind that my twin brother also has this, we posit it has the same cause, and that since he had it years sooner, and had to learn all of this from scratch, it took him 4 years to beat into remission. We are both doing better on the following protocol.

(1) avoid regular sitting:

(a) Stop extensive sitting: Arrange to have something besides a chair to sit in. I lounge on a beanbag chair at work. Get up and walk around for five minutes at least once an hour. Extensive sitting, in my experience, promotes pain and afferent sensation in the penis. When I avoid sitting, my pain moves to locations within the pelvis, which quite frankly, is much more sufferable than the severe penis sting. When I sit for long periods of time without my adapter (see b), I get afferent sensations (bead in the urethra) or a stinging sensation that lasts for days. I'd rather have rectal sensations while I work on reducing the pain.

(b) Seat adapter: If you can go to a geriatrics/wheelchair store, you can find a cheap plastic toilet seat adapter that is a hard, raised toilet seat platform designed to "raise the elevation" of the toilet seat. Buy one, but we won't be using it for that. Taking a hacksaw, cut the seat so that it is only 1 inch (2.5 cm) high. Put it in a pillow case and use it in a car for driving, or on a seat at social events. This toilet seat adapter prevents my induced pain in general, and within a pillow case is not conspicuous. And screw conspicuousness, anyway.

(c) Think of it this way. If your body is complaining about your lifestyle, its time to change your lifestyle. Maybe your body is complaining. It may not be the root cause, but it can help.

(2) Keep taking your medication under your doctor's supervision. Long term continued compliance with medications will help your mood, which will help your pain levels. Pain and mood are linked to suffering. Why suffer? If a med isn't working for you, get your doctor to switch your meds, or get you off meds if that is the solution.

(3) Less pain in the mornings

(a) Having less pain in the mornings is not just because of the Xanax the night before, in my opinion. It is because your muscles have been less tense during your rest period, and your central nervous system is also rested. Having less pain in the mornings is quite common and is a good sign, in my opinion, that the protocol many of us follow here can help you. I would think a bit more about that rest feeling if I was you, and don't be so quick to judge that medication is causing it. That's my humble opinion.

(b) Having less pain in the mornings, try to recreate that sensation throughout the day. This involves

i. Daily relaxation sessions: at mid-day (even if only 10 to 15 min)

ii. Watchful relaxation: You NEED to pay very close attention to your muscle tension throughout the day. In my case, I was holding muscle tension during stress and some common daily activities that I wasn't aware of until a Physical Therapist helped me learn to feel it. Its not a hoax, once you can feel it, you will know when it is there and not there. Our civilization is just very detached from our bodies in some respects. A simple education fixes this.

iii. Take naps: When it all gets to be too much, try taking a nap and see if it doesn't help reduce your pain levels. Cats do it. They're cool.

(3) Physical Therapy: I understand your reluctance to have a finger up your butt. You seem committed to avoiding that experience. That's ok. There are other physical therapy options that can help you, especially at the beginning. Once you see improvement, you can re-evaluate your perspective as your results see fit, either in favor or against.

(4) Psychology : It helps to have someone to unburden yourself to who is not a family member you know counts on you to be strong. So if you are seing a counselor, let loose. If not, find one and get it all out in the open. This will reduce your stress and tension levels, and reduce suffering and possibly pain as well.

(5) Standing and Daily Activity: While many of us cannot return to our active exercise regimes of our younger days, we can benefit from walking. It can reduce pain by stretching muscles, release endoprhins to block pain signals naturally, and most importantly, tire out your muscles so that they don't tense so much in the afternoons.


That's my advice Dennis. It sounds to me like you and your doctors have found medications for you. I think it is really important for you to really focus, if you haven't been, on the meditation/relaxation and daily tension awareness aspects of treatment.

I HIGHLY recommend getting in touch with your potential tension sources. Getting in touch with your muscle tension in your pelvis is CRITICAL to reducing your pain reoccuring on a daily basis.

When my symptoms were at their worst, the penis pain was intense, my pelvic floor muscles quaked and spasmed, and the pain felt like a hot, electrified bowling ball had somehow embedded itself at the base of my pelvis.

Now, I am pain free most days, and occasionally have symptoms such as mild penis sting (Thursday afternoon) or rectal pain (Monday) that go away with fifteen minutes of walking and commitment to muscle relaxation.

That's my two cents.

And remember, waking up in the morning with less pain is a very good sign.

[CppsDad]

Apprehension about internal PT is common. However, you are doing yourself a disservice if you don't at least get evaluated once by a professional in the area. Not only will they find internal areas that need work, but they will find external areas as well. Personally, I think I learned more from my PT intellectually, then I got out of it physically. I asked a lot of questions, got a lot of good answers, and put those answers into practice. I treat myself entirely now, but I don't think I could have been nearly as successful by myself without my PT's input in the beginning. True, as Lightning Tree suggests, there are a lot of therapeutic options that don't involve internal work, but if there is internal work that needs to be done, very little will help you except for the internal work.

Lightning Tree lists a lot of good suggestions. Follow them, and you'll probably see improvement. Personally, I attribute all my success currently to:

1) Stretching
2) External PT
3) Internal PT
4) Walking
5) Better attitude
6) Pain medications
7) Relaxation

Michael

[Paso]

ddt,

how is your sister doing today?

/Paso

[ddt1974]

ddt,

how is your sister doing today?

/Paso

I talked to her about it a few months ago before my cystoscopy. She says she has about twice a week flares, feels like she wakes up with a bladder infection but it goes away. She said her main symptom is burning too. That's all she said.

[Paso]

Ok, but does she live a normal life? does she work etc?

Paso

[ddt1974]

Ok, but does she live a normal life? does she work etc?

Paso

Yes, normal life. I think I have more pain than she does!

[Paso]

Thats good news on her behalf. What treatments did she try?

[graeme]

My sister has IC as well, suffers bad just as I do with CP.

I often wonder if there is a genetic weakness for this seen as it is a huge coincidence

[ddt1974]

If I go to my 1st physical therapy appt, what should I expect? Give me details! Thanks, Dennis