Help!

[Budgie]

I am a male who was diagnosed about a month and a half ago after suffering very bad pain in the perineum and urethra since the start of this year. I have had urethral pain for about the last 12 years but it was always diagnosed as prostatitis. This year it came on with a real vengeance and has basically reduced my quality of life considerably. I have a sort of cramping pain in the perineum which is awful when I sit down and as the day goes on it gets worse and worse. Over the last few months, my legs have started to feel like they're burning, especially the right one. It starts in the inner thigh and as the day goes on spreads to the whole inside of the leg. I also get a stinging an the urethra all the time. Almost like being stabbed, especially when tensing the pelvic muscles. I am on Elmiron, Hydroxizine and Elavil plus a pretty heavy dose of Neurontin, 2.7g per day! This eases it for a short time but then it just comes on again. I'm so tired with it and don't feel like I'm ever going to get well again. It scares me to think that I am going to have this awful pain for the rest of my life. I'm 39 and it's really getting me down.
Can anyone relate to all of these symptoms? Any ideas on how to alleviate the pain which is just unrelenting. Even pain meds don't touch it.
Thanks in anticipation.
Neil

[kimmi158]

Hi Neil
First of all I would like to welcome you to the Icn.There is so much information for you here and I hope it will give you the answers and support you need.You can find so much in the patient hand book if you scroll to the top and click on hand book.

I also have alot of the pain that you are having ,but I can tell you that I know it's hard right now but with the right treatment you can live life.It may not be the same but it can be good.
Take care,
ICNKim

[Rob]

Neil,
Sorry to hear about your pain. I'm sorry I can't relate to the leg pains. The urethra burning/pain I can. Feels like I'm voiding glass when it's bad. I get a lot of spasms in the perineal. Lately I've had moments of numbness in the perineal. That's new and I don't really know what to think of that.
Sorry I can't help much, but I didn't want you to think the men here aren't responsive ;) . I've only recently been diagnosed and my uro is worthless. I've got an appointment with a "real" uro in Cleveland in November. Long wait, but I hope it's worth it. My current uro put me on Elmiron and I asked for Ditropan XL. So far I haven't really had any relief. Part of me holds on to the idea I might just have a bad infection. While I'm dreaming, I want a pony! :D
Once again, sorry I can't really help with what you need, but good luck to you.
Rob

[ICNDonna]

When I am flaring, I always have leg pain to go with it. I think it's partly due to my becoming extremely tense with the pain.

Sending healing thoughts,
Donna

[Breck]

I have the urethra pain, burning all day!!! It woke me up this morning early and I couldn't go back to sleep. Burning is so bad that I break out sweating. Was driving my 8 and 6 year old daughters to school and my oldest asked me why my hair was wet! And to add, I am passing a kidney stone on top of it all!!! I feel like I need to stick something cold up my urethra for relief. Burning, burning, burning!!!

[Michael Farr]

Finaly! It took me a while to learn how to use the message board! Any way, It is so good to finaly be able to post. I have had IC for about 10 years and it has been hell! To say the least! I am in the prosess of the second round of DSMO inductions and hanging on for dear life. I just moved to Des Moines IA and I am trying to find work. I am a little afraid becuse of the challenges of trying to work with IC. I am a Counselor and when I first started working, sometimes I would have to leave a client for a potty break. It was embarrassing! The last job I had my boss was very compationat so I thank God for that. I was not diagnosed until about 5 years after the symtoms started. I went through all kinds of surgerys and antiabotics for things I did not have. Then a Doctor just started giving me Ultram to deal with the pain. The pain would be so bad at times that I would turn white and scare the **** out of my wife. All I could do then was take shots of wisky with Ultram and hang on for dear life! I have been using Ultram for pain management for about 10 years now. I also use it before the DSMO inductions and it helps a lot. Well I guess that is enough of an introduction. I really hope to hear from some other Men as I have never been able to talk to any one about IC I have gone it alone for 10 years. Thank you Michaelnull

[Leigh]

This may be old news to all of you, but I have found that in my worst days of pain, if I just stay in a hot hot hot bath, the pain subsides. Granted, about 2 minutes after I get out it comes back, but those minutes (30-45) passed in the hot tub are heaven compared to the pain.

It's not a practical solution unless you can throw a tub in your backseat and have the kids drive and get one installed in your office, but for those days you stay home, it's a huge relief.

Wishing you healing a quick relief.

[Michael Farr]

Yes I have done the hot baths too! Some times I would drink hot black coffee while in the tub and it seemed to help stop the pain longer. Don't ask me why, a lot of the things that I have tried have been hit and miss. By the way I in no way mean to sound like I know anything more about this IC stuff by using the name ten year vet for my sign on name I just thoght that it may be a less used term and I would not get sent back to the drawing board to pick a new name. As I said before it would be great to hear from some other people I have never been able to share with other suffers of this discusting disease. It is so good to know there is a place to share. Any one out there looked into disablity. How are some of you dealing with work issues. I have heard some say they cannot touch wine. I have found if I drink some wine before bed time I am up less at night. If I don't have some wine or other drink I am up and down a lot. Go figure!!! Well bye for now I hope to hear from some of you soon! I know we are all buzzy!!! Michael :p :rolleyes:

[t T]

hi,

i don't really have anything profound to
give you for advise-except-
-hang in there-
i'm relatively new to this group, and a
internet,computer newbie, so i haven't
posted much.
-i was first diagnosed w/ic in 72
-then that doc left my state
-it took me until the mid 80's to find
another doc that knew anything about ic
and get re-diagnosed again-and it took both
of us to the breaking point of frustration
before my body and his office time frame,
about a year-we were both ready to scream,
and give up-finally-break thru-
-then i moved
and have had bout of try a doc. -try another
doc - syndrome- got help- then one doc
quit-went to va.-the other quit practice
because she got cancer
-the long story - short - is -lot more to it-
don't give up !!!!!!!!!!!!!
- you can make it - you aren't alone
- i'm here, this group is here,
- recognize your courage ! !
- your are courageous- others that don't have
ic - can't see (don't know) - they only see
your outsides - not what you do internally
during every one of your 24/7 days and nites
- you do make it every day !
! ! you have a courageout spirit ! !
! ! i applaud you ! !

-i don't know if this will help you or not
but - i hope & pray it does.
- consider yourself mentally hugged
tT :rolleyes: :cool: ;)

[Michael Farr]

I don't know who posted last but thank you so much for your kind encouragement. I see that you have had IC for a long time also. Yes, the Doctor thing can be very trying. I was teated for Prostities (not sure about sp)for about the first 3 or 4 Years. I had thee surgeries and two biopsies before I was finally diagnoest. I seem to be doing some better and the Ultram helps on bad days a lot! How do you manage pain in your challeng? How do you manage work. Have you looked into disability? My wife has been very understanding and compationate but she still does not know like we do what it is like to deal with IC. It has made an impact on her life though to see me suffer when I have bad days. I hope that you have understanding people in your life! I want to thank you again for responding to my post. You are the first person who has directly posted to me although I am sure it will be encouraging to others also. I am 49 my name is Michael and I live in Des Moines IA. You made refference to prayer, that is the only thing that has gotter me through this ordeal. My faith in God and His loving kindness and the kindness of others like you. It is my prayer that God will stregthen you and that His grace lift you up on your bad days. And, I pray that we will both be healed or that the perpose of this challeng may be seen clearly. Blessings to you and all who post here. Michael ;)

[Steve G.]

Budgie,

Please ask to have a DMSO or cocktail bladder instillation. It should help. Then go to the Cystitis Research Center web site. Contact Dr. Fugazzotto and send him a urine sample. He'll tell you if you have a hard-to-find infection. He'll recommend antibiotics. At this point, its worth a try, right?

Steve

[sandi]

Budgie, Hang in there, it will get better! I too have the pain in my legs and almost unbearable pain, sually in the left leg. Also almost unbearable pain in the urethra. I've had ic for a couple of years (probably longer, but the diagnosis took forever); I've had uro problems for the past 20 years. I normally take elmiron, neurontin, detrol, novo-ketorolac, macrobid, and oxycodone. I've had dmso instillations for the past year that have done nothing. My uro instilled something called chlorpactin in the o.r. about four weeks ago and the relief from constant pain is unbelievable. Since the chlorpactin treatment I haven't needed my oxycodone at all. Why not ask your uro about this treatment. I've found that the novo-ketorolac (analgesic) works pretty good for the urethral pain.

[Michael Farr]

Thank you Sandi for sharing some of the treatments you are using. I have never heard of some of the one's you listed. Budgie, I recommend looking into the DSMO inductoins too. They seem to help me enough to make it worth the hassle of doing them. My uro showed me how to do them my self so it save on the bucks. I usually have to do about 10 of them before I get any results. My uro has me do 12 in a row twice a week. My uro has me use hydrocortisone, heparin, and sodium bicarbonate to mix with the DSMO. I just moved to Des Moines IA. dose any one know a good uro in Des Moines? I hope this note finds you all doing better and Budgie I wish you blessings and results in your attempts to find good treatment. Hang in there you will get through this!!! ;) :rolleyes: Michael. I want to thank all who have posted it has been a great help to me and I hope that I have been a help too!!! Bless you ALL!!!

[Breck]

Hi guys!!! I don't even want to think about going to another URO. I just had stones removed and that urescope tore me up!!! My IC or whaterver it is has doubled!!! Pulling the stents out turned me white, and they say its nothing???
I find I do a little better taking klonopin for my nerves. I'm off to take my second walk of the day to try and relieve some anxiety.

Blessings

Breck

[Murph]

Breck:
Have you tried pyridium or some other urinary anesthetics? I have severe urethritis and mild prostatitis that comes and goes, and the urinary anestetics keep it in check along with oxycontin and roxicodone. Neurontin did not touch that kind of pain and made me sleepy as well as dumb as a doornail. Also, try inasmuch as possible to stand in a hot shower every time you have to urinate. It helps me alot. Elmiron has made a big difference for me also with urethritis, surprisingly more so for that than for the IC and Hunner's ulcers. Hang in there bud and know that there's others of us out there and we're here for you. :cool:

[Budgie]

Thanks guys, for all the responses. :D It sure does help to know that you people care and know what we are all going though.

I'm due to see my uro next week so will suggest the stuff that you mention. I'm still suffering just as bad and don't know sometimes how I get through each day with the pain.

Has anyone ever had a definitive answer on what causes the leg discomfort? Is it just referred pain from the nerves in the pelvis?

Thanks again.

Neil

[Michael Farr]

Hey guys: I found a uro here in IA Des Moines that is. He is a know it all, and is not very compationet. It is a hassel to find a good uro that knows whats up with IC. I may try another uro in the same clinic. I have to because my insurence will not give good coverage out side my plan. Any way, I am doing much better after the DMSO cocktails and I am using Elivil for night time freaquency;it helps a lot. I know you did not post it here Breck, but I wanted to thank you for the prayer that you posted. I believe in prayer too. I have had IC for 10+ years and prayer has been a help!!! It any of you guys know of teatments that are helpful please share, I have found a lot of help that way. Thank you all again for posting. It is very encouraging to from other people who are keeping on and coping with something that is out of our control. God bless you all, Michael ps dose any one know what the UBB code is and how to use them? Thanks :rolleyes:

[sandi]

Hi Budgie,
Re: leg pain, my doctor believes that the leg pain is due to nerve damage in the pelvic area. The other contributing factor is that the muscles in the pelvic region tense in a protective reaction and when there's no relief from the pelvic pain the muscles seem to "forget" their "normal" position. Ask your doc if anyone in your area does internal pelvic massage, it helps. The first several treatments will hurt like a son of a b@#$%. Once the muscles have been relaxed, gentle stretching and regular massage therapy will help. I know what it's like, have been struggling with the same thing for years.

[Budgie]

Thanks Sandi

My physio did start to do some internal myofascial release. It helped for about half a day and then the pain returned as before. When i mentioned this she said she wanted to look at my posture before doing anymore myofascial stuff. The problem in the UK is that they won't or can't see patients several times a week so I can't get the benefit of it.

Budgie

[ridgerunnermax]

Response to Budgie. I have been diagnosed with IC as well. My primary symptom is pain. I have been unable to sit comfortably for the past 2+ years. I have perineum pain, lower back pain, pain in the scrotum, pain in the inner thigh.

I am presently being treated by a Physical Therapist who specializes in treating patients with Chronic Pelvic Pain. Don't know at this point if it is going to help or not.

Please email me at maxridgerunner.wmconnect.com. I also event any other man who has been diagnosed with IC or Chronic Pelvic Pain to email me as well.

I think we men who have this condition need to do more to support each other.

Take care.

[doylebr]

Budgie,
Hang in there man, I think all of us here know how tuff it can be. As far as what helps, I have found that consistenly watching your diet can help (avoiding caffine, carbonation, drinking mostly water), but it is not an overnight thing, you have to be consistent with it. Also, tylenol is a big pain reliver for me. Aspirin or other pain meds aren't as effective. As far as the pain in your legs, I do know that when your bladder is in shock, it can tighten any muscle connected to it. That is why many people with IC also have pelvic floor dysfunction. They're are many physical therapists throughout the country that teach you stretches to try to help you with this. I have gone to one, and although it is not an absolute correction, I do think it does provide some help. Ask your uro if he/she knows anything about it. Good luck with everything. We are here for you.

[Budgie]

Hi Guys

Thanks for the responses. At last I have managed to get my physio to do myofascial release three times a week starting on 23 January. Let's hope this helps because the pain is still unbearable. I have started some new painkillers (Tramadol) which I need to take with paracetamol and they do take the edge off the urethral pain for an hour or so but it's the perineal pain that is the worst and it doesn't do much for that. I have forgotten what it was like to sit comfortably!
I have been on the Elmiron now for over three months but it doesn't do anything for me yet.

Thanks for the messages anyway guys. It is appreciated.

Neil