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Pikkaso1980 10-25-2004 12:01 PM

IC/Chronic Pelvic Pain Syndrome
Hello, Everyone;
I have been suffering from "CPPS" for over 3 years. I would like to know if anyone has this as well, i am very supprised it does not have it's own topic.
Any way, I have done every treatment that is available. I have recently discovered information on "Pelvic Myoneuropathy" and wanted to know if anyone has read into this (more than I have)?

-What does every one think about this "wastebasket term" (as they call it) CPPS (it is not "wastebasket" to me, as it has compelty ruined my life)?
-Has anyone ever under gone trigger point therapy?
I really can't think of all my questions right now so i will add on later.

Shoreline, what do you think about all of this, if anything?

Shoreline 10-26-2004 07:08 AM

Re: IC/Chronic Pelvic Pain Syndrome
Hey Pikka, Acttully CPPS is a new one for me, being a guy I don't have quite the same experiences with female problems.

I undersdtand being anoyed with using a catch all syndrome that may used as a DX when they can't find another problem. Kind of ike failed back surgewry syndrome, what does that mean, what failed. It's a descriptive DX ,obviously a specific DX you feel you can find treatment for would be better. We would all rather have a specific problem we can fix than some DX that just describes what we experience.

You did mention IC and one of the more published outspoken PM docs is in memphis and specializes in IC, He may be able to guide you to someone in your area that may be more help. What exactly seperates IC/ftom CPPS or PID.

Dr brookoff is well published and this is his specilaty although he treats all types of painful conditions.
His name is Dr danial Brookoff and heer are a couple of his articles. I would try to make contact with him. Just cut and paste the addys into your browser or do a search for Dan Brookoff

It is easy to start confusing something that started as one problem like IC or PID and then spreads. There is a physiological and biochemical reason for this as explained in the first article. Acute pain is very different from chronic pain and can spread as it Increases in neuro inflamatory agents are released with the CP process and nce localized panin can be diffused and spread over an entire aresa, much like RSD, starts with an inury to something like a hand and ankle and spcan spread into CRPS chronic regional pain syndrome, It just means it's spread nthrough a specific region rather than being clearly the old injury.

The IC sites would probably be more familiar with the tratment options for IC or CPPS. Whatever the source, pain is a very destructive force in some peoples life and not addressjing it can cause problems like your experiencing now.

My experience with TP injections has ben varried, The doc either seems to have the touch or doesn't. Trigger points are usually given to break up muscle spasm, not adhesions and the peppering method of hitting as many places as possible doesn't seem to be as effective as focused TP injections.

If you don't get good results from one doc it dosn't mean this modality can't be beneficial because so muc depends on th docs touch and knowledge of anatomy and simply being able to find the right spot versus hitting as many spots as they can get out of a couple needles full of juice. TP's noramlly consist of a numbing agent and an anti inflamatory, there are plenty of anti in=flamatories to choose from so I can't say if it's goning to be steroidal, NSAID or a naturally occuring anti inflmatory agent.

My wife is presently getting much better relief since they added Nemanda into the mix of meds, This parkinsons med also blocks the NMDA receptor which helps with neuro pain, pain tolerance and opiate tolerance, blocking the receptor can also slow or stop the flow of harmful enzymes and neurotransmitters that are created from NMDA activation like substance P and the calcium channel blocker NK-1.

The first article explains this too. It sounds complicated but once you read it a few times you should be able to pick out the relavant parts and have a better understanding of the biochemisty invloved in CP and the ways to reverse some of the damaging effects of the new neurotransmitters and pathways created that allow CP to continue on for months and years.

TP's aren't particular painful when focused but when they pepper an entire area they do seem to cause pain after the numbing agent wears off.
Honestly I would seeif you can contact DR B and by email or phone and see if he can recomend someone in your area or just recomend some of the treatment methods he uses and then you have to find docs familiar with that modality.

Sorry I couldn't be more help, I'm just a little out of my own ballpark when it comes to these types of problems.

Pikkaso1980 10-26-2004 08:22 AM

Re: IC/Chronic Pelvic Pain Syndrome
Thanks Shore-

I just want to point out that i am a male, with CPPS.

Shoreline 10-26-2004 12:25 PM

Re: IC/Chronic Pelvic Pain Syndrome
Sorry Pika, I assumed and that can make an *** out of someone. IC is much more prevelant in women but men can have it to.

Hey Pikka, You know you storry remined me of my cousin, He was 22 years ol, lived IN WV and saw 41 different docs about testicular pain, had lots of tests done, was referred from doc to doc, They all assumed he was two young to have testicular cancer so an MRI of the area was never done. Fortunately he found a urologist that looked at things with a fresh set of eyes, cought the cancer and said if it hadn't been cought at the least he would have lost both testicles and at worst could have died. 41 missed DX's. He was treated like a drug seeker at ER and by docs, DX with minor problems like epiditimiasis. inlamtaion of part of the testicle. But 41 docs? That's not an exageration either. I saw him last christmas and his wife went throgh all this with him.
Good luck, Dave
Sorry about spelling and typing errors, I corected them, I was on my way to get my pump refilled and rushing.

LOVEQ 10-26-2004 01:01 PM

Re: IC/Chronic Pelvic Pain Syndrome
Dear Pikka:

I have Ic and a few other things as well. Boy this disease is sure not fun. So how long now have you been diagnosed??? Are you currently on and meds?? What treatments have you tried???

I did try trigger shot injections but they did not work for me at all and mad me worse!!! But please don't go me some people have had luck with them....

If you ever need to talk I am hear..... I am a female but it does not matter this diease is the same for noth of us. A big Pain in the ***........ ha ha

take care
Love Q

Pikkaso1980 10-26-2004 01:47 PM

Re: IC/Chronic Pelvic Pain Syndrome
I woould love to hear about the sysmtoms you are dealing with, what meds have helped you out? Have you ever tried "Trigger Point Massage"? not just injections?

LOVEQ 10-26-2004 02:03 PM

Re: IC/Chronic Pelvic Pain Syndrome
well you know all of the things that you can do for IC well lets just say I have done them all including natural approaches as well with no luck.... I have tried massage which my person calls deep tissue massage I believe it is close to the same thing... this is great for you anyway you look at it. Cause it can help with toxins in your body and getting them out of your body.... so I could say try it why not. You always want to try the less invasive stuff first, then when all else fails then go to the other stuff. M pain is so intense that most days I can't get out of bed and I am only 30 years old and I work full time... My boss is growing not happy with me.... She my main thing as long as I can get out of bed to go to work I am happy with things.... but this has not been my case lately..... Now I am on MScontin 30 X3 and MSIR 15mg X3 a day and it is not work at all and it has been two months. I have tried other things drugs that have helped the most was Oxycontin, but they felt 40mg X 2 a day was to much..... Hate doctors some time.... So that is where I am right now..... there are treatments out there. Some work for one person ,but some will not work for the other... so never go by that. Just remember least invasive is the best first.....

Please write back if you need more input....
take Care

LOVEQ 10-26-2004 02:08 PM

Re: IC/Chronic Pelvic Pain Syndrome
ohhh I am sorry forgot to tell you my symptoms. My pelvic region feels like it is on fire sometimes and then other times I have electrical bolts of electricity to go thru my bladder and down my front of my thighs. It gets so bad I can even stand on my feet let alone walk for longer then 5 minutes at a time without dieing in pain. I also get pain that is from my pelvic area into my back like bolts of electricity..... I go to the restroom and pee like 50 times a day. No joke.... It hurts to pee feels like I am peeing glass..... God there are so many more symptoms go to tell you. I would go and do a google search and see what you think.

Write me back OK??

Pikkaso1980 10-26-2004 02:24 PM

Re: IC/Chronic Pelvic Pain Syndrome
Sorry my replies are so short. How long have you been in pain? do you have a Pain Doc?

twisten 10-30-2004 12:42 AM

Re: IC/Chronic Pelvic Pain Syndrome
Hi Brenda, when you feel the need to vent this is a great place for it!! Welcome to the board. Glad to see another new peep on here but sorry for the reasons. Hope to read more posts from you.
Sorry for interrupting the post just wanted to give her a welcome.

exxon 06-24-2009 04:17 PM

Re: IC/Chronic Pelvic Pain Syndrome

I've had this for 19 years. I've been on all the standard treatments and nothing has worked. I'm now going to try Elmiron. I feel so sorry for anyone with this condition as it can really mess up your happiness. If the Elmiron works, I'll be very surprised.

tinabean34 07-04-2009 04:14 AM

Re: IC/Chronic Pelvic Pain Syndrome
Hi everyone,

I have been dealing with this for 5 years, diagnosed 4. I have tried the diet, Elmiron, pain meds, injections and on and on.

If you say your still in pain the doctors don't believe you. They say well you aren't following your diet... you don't have it under control.

They seem to forget that for some of us there are other things that are triggers for the IC that have nothing to do with food. Stress, long car rides, stress, other ailments in your body can exacerbate your symptoms.

I also have endometriosis and the two together are just miserable. I am glad I found this post though because I thought I was crazy. I also did Physical Therapy - Internal Physical Therapy which was unpleasant and embarrasing. That flared my pain, did massage, acupuncture.

It is just a hard thing to deal with. The only thing that helps a little is the pain meds, but I don't feel they have me on enough but to everyone else it is a lot. Yes it's a lot for something acute and not chronic.

I have been so depressed and frustrated. Sometimes I am scared to eat. Anyone else have that?


exxon 07-17-2009 02:24 PM

Re: IC/Chronic Pelvic Pain Syndrome

I tried the IC diet. It didn't work for me. I eat what I want. I figure if I'm going to be in pain anyway at least I should enjoy food. This condition is very depressing and can really get you down. When it does, vent! It helps.

elementaryteach 07-19-2009 04:40 AM

Re: IC/Chronic Pelvic Pain Syndrome
Tina, I know EXACTLY how you feel! I've had IC for about a year and a half, diagnosed just this last winter officially, when I had surgery to hyperextend my bladder (which didn't work by the way). Now I'm taking Elmiron, Vesicare, and Trimethoprim. Elmiron to help with the lining of the bladder, Vesicare to help with frequency and urgency, and Trimethoprim to help keep infection away (BURNING pain!!!!! Feel like my insides are ON FIRE, literally, when I don't take it for awhile). Like you, I also have Endometriosis, which I also discovered in December when I had a double surgery. I had a mild case of it, but it was enough to cause pain. I developed Endometriosis soon after noticing IC symptoms, within 5 months! I have done research, and IC and Endo. seem to be related to each other, but researchers really don't know why yet. Have some links to some articles for these "Evil Twins," as they call it if you have both conditions. 90% of females have IC, when only 10% of males have IC.

Let me know what you think. I have also heard that people with IC can have surgery to remove their bladder, and replace it with a new one, made from your intestines. However, the surgery is not always successful, because the IC patient may still have the same symptoms, because the base of the original bladder remains. If I were a doctor, I would SURE be working HARD to finding a cure for this debilitating disease!!! If the U.S. Post Office knew how much time I spent in the bathroom in the last year, going about 15 or more times per day, once every hour, or more, AND not to mention getting up once or twice every night in the middle of the night to go!, they would deliver my mail to all of the bathrooms in town (Lord knows that I know where EVERY SINGLE bathroom is in a building!).

About a month ago, I went on a two-week trip to Europe. One of the things that people gave me a hard time about was going to the bathroom. I told some of them the condition that I had so they would understand why I had to go so much. Anyway, people, mostly the women, would come up to me and ask me where the bathroom was in each of the places we went to, because chances were, they knew that I had already been there! I was the bathroom tour guide/director. Fortunately, there was a bathroom on our tour bus! Otherwise, I don't know WHAT I would have done! Not to mention a bathroom on our nine-hour flight to Amsterdam! I used the bathroom 5-6 times on that flight! I had to FIGHT PERSISTENTLY with my unfamiliar seatmate prior to the flight that I have the aisle seat!!!! He said that he really preferred the aisle seat, and I told him that I had to go to the bathroom a lot. He said he wouldn't mind getting up. I told him again, this time more persistent, that I had to go A LOT, and he conceded, thank goodness!, to sit in the window seat. He said he would try it, and I'm so glad he did! I was going to keep fighting for that seat. He would've gotten really annoyed to have to get up that many times, esp. if he fell asleep and I would've had to wake him up. I think he was glad that he sat by the window, ESP. since he only got up once or twice during that 9-hour flight to use the bathroom!!!! I almost asked him at the end of the flight if I knew my medical need, but I didn't. I made SURE that I used the bathroom, a LOT, which I also KNEW with TOTAL confidence that it would be NO PROBLEM to use the bathroom frequently!!!

Anyway, going to back to the Endo. Have you tried birth control yet to help with the symptoms? It's the less expensive route than Lupron, which my gynoco. said was a six-month treatment, and without insurance would cost $1,000 per shot!!!! That's $6,000.00!!! Don't know about you, but I don't want to spend that kind of money, with or without insurance! I decided to try the birth control pills (Low-Ogestrel is what I take). I had my period for a couple of times after I started taking them, and then I finally asked my gynocol. if I could just NOT have a period anymore, because with both the IC and Endo. symptoms, it was HORRIBLE during that time, and esp. a couple of weeks before, when I would also have ovulation pain, that is, feeling the egg actually travel through the fallopian tubes....not fun! So now I just take the Active pills, instead of the 7-day Inactive pills. It's much better! No more periods, at all! My doctor said that my body would remember all of this if and when I wanted to have a baby, to just start taking the Inactive pills again. I've been period-free since my last one in May, which has helped IMMENSELY!!!

Seriously, talk to your doctor about it, and see what he or she says. Of course, one side effect that I've noticed with taking birth control since March is the gradual increase in appetite that I had. I've gained 15 pounds since March! I can eat, and eat, and eat, and not feel full until I'm COMPLETELY stuffed! And paying for it dearly! She's aware of this, and I asked her if it's possible to lose this extra weight that I've gained. She said with a highly disciplined, healthy, diet, exercising, and working REALLY hard to control my RAVENOUS appetite, it IS possible to lose weight while taking birth control. I've started working harder in this area in the last six days. Optimistic about losing weight now! I'm also going to try the IC Diet and see if it helps my IC symptoms further. Haven't really tried it yet, with all of these other medical things going on. My IC has definitely calmed down in the last couple of months, with the help of taking four different medications, three for IC alone, and one for Endo.

I've also been drinking a LOT more water, because for each Elmiron and Trimethoprim pill that I take, I have to drink a FULL glass of water for it to be effective. I've also read that a common misconception for people with IC is to not drink a lot of water, drink barely enough to scrape by. I have researched and concluded with my own recent experience, that drinking MINIMAL amounts of water every day actually makes IC worse. If you think about it, water has lots of minerals and other substances. Drink lots of water to help your body get rid of all those toxins. I've also been told that a special water called Lifesource can help with Endo. Haven't tried it yet myself, but I'm about to! Will let you all know if it's effective, but it might be awhile before I notice results. Who knows, maybe it will help with my IC too? I'm going to be optimistic, but also realistic and practical about it! I've spent a long time, too long, being depressed about all of the medical conditions that I have. And now I might possibly have Celiac Disease or a wheat allergy....have an allergist appt. in a few days. I'm VERY curious to find out if I do...will solve many of my medical puzzles. Of course, if we really want help, we should all go to the Mayo Clinic in Rochester, MN, and DEMAND a cure!! Or undergo more testing! That's my next step if I can't figure out my 5 1/2 year symptoms NOT related to IC and Endo....tired of the pain, some sleepless nights because I'm in pain and can't get comfortable, feeling bloated, etc....Well, I better sign off! Fellow IC and Endo patient in need of some encouragement, but also feeling slightly optimistic :)

PNo 07-19-2009 10:23 PM

Re: IC/Chronic Pelvic Pain Syndrome
IC caught my eye. I have not been diagnosed with IC but I am in urological testing which looks like it will end up being neurogenic bladder from spine issues. Along with this problem comes urinary retention and that looks to be irritating my bladder. I just had a cystoscopy and my bladder was pretty irritated and red but no stones or tumors! THey did no a biopsy. Just the process of the exams seem to help my bladder because they are flooding it with saline water during these tests and washing it out. So I started researching and found that one treatment is a "cocktail" they can give your bladder through a cath - you hold it for 10-15 minutes and it soothes the bladder. It is a regular treatment you can get and there are people who self cath that do it at home. I also was told after the tests we may go down the path of fluid restriction - because if you are red, irritated and bladder muscles are overworked it is a vicious cycle causing pain. ANyway I saw the other poster make a comment about fluids and I think depending on what your exact problems are it might be a different answer for each person with these problems. Thanks for all the posters - lots on the pain and spine and back boards seem to have these problems but don't make their way over to the urology board which is pretty quiet.

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