I am assuming I have a complex case!!!

[Kirs10]

I was diagnosed with IC in 2003, I have been alot of pain with it, and extreme urgency and frequency. I had a hydrodistension done in 2003, and it worked pretty well for about 8 months. Then in 2005 I had just started a new job and I had the worst flare and my then uro did another hydro in december of that year. It last about 6 months and then the pain came back and the uro refused to do another hydro, he said that I needed to try everything else first. So, rescue instillations, self cathing, upping meds, and a refusal from me to do DMSO treatments, and he was done with me. He told me that I had refused the stndard of care there was nothig else that they could do for me..........this was all over a 2 month period.So I found a new URO 2 hours away. I saw him and in the first visit he told me that i needed the interstim done and that it would help with the pain and I would be feeling better by the weekend is what he told me husband. He did tellus that if this didn't help with pain he would do a hydro every 6 months if I needed it to be done. 2 months later he did the trial, and it didn't help with pain but it did help with urgency and frequency, so he told me to put it in and they would refigure it and it would help with the pain.
So December 15th I had the interstim installed and guess what no help with pain and when i went back for my post op he told me that i needed to give it time and that it would work but it didn't so when i saw himj again i asked about the hydro and he said that he doesn't do them very often because he doesn't believe in them.
I worked for a month through major pain taking vicoden every 4 hours for pain and dealing with the sweats and the side effects, I went back to my PCP to see if he could give me some stronger meds and he agreed to give me percocet and vicoden and to alternate them. I did get to see the URO again and made him do the hydro that has always worked and so on the 23rd of March he did and it made it worse if anything. When i went back for my post op from that he told me that we had done everything that we could do to fight this and there just wasn't anything else we could do.........He told me he would give me a fentanyl patch to try and see if it helped but that my PCP would have to follow it. So I followed up with my PCP and he upped the patch to 50 mcg and says that i will probably need to go up to 75mcg. His concern is that he is going to get h pain meds to help with the pain but he is not sure I am going to be able to function on all these meds.
I am feeling very depressed, and I am trying to keep my chin up and it just gets harder and harder. My husband is not very compassionate about my pain and he isn't very happy that there is only one income in our family right now. I am thinking about filing for disabilty, but can't afford the book that is on this website for sale to help people.
I guess I just needed to vent my situation and see if there is something else that I am not aware of to try to help me with my pain.
I really appreciate all the help you can give me.

[jen74]

I am so sorry you are in so much pain. I understand what you are going through. I have alot of pain with my IC. I am doing heperin/lidocaine instills now, but so far it makes my pain worse. I will do another one this Friday and see what happens. I also have a motility disorder in my upper stomach and small intestines and cannot take alot of the meds that are used to treat IC as they mess my stomach up bad.
Your doc was a jerk to drop you just because you refused to do the DMSO. I will not do DMSO treatments either. I also will not do a hydrodistention. I hope and pray my urogyne does not drop me. I am also a complicated case because I have other health issues that interact with the IC and the treatments. IT is rough.
Is there any way you could see a different doctor who would maybe be more willing to work with you?
Jen

[ICNDonna]

Since you've already seen two uros, my suggestion would be a third opinion. I suggest you find a uro who is not in the same practice as the first ones.

Donna

[littlemyrn]

I'm sorry you are going through this. I have had many breakdowns lately with the pain issue. I am lucky right now that I only work about 5 hrs. a week, but come fall I am going to have to get a 20 or so hour job in addition to the other for income (just got divorced last fall). Things are pretty tight here, but making the child support and alimony stretch, but I told my URO at my last visit that I have to get better in order to do this and she has already said that other than interstim there is not much more to try. I already to self instills of Elmiron/Lidocaine, just got a TENS unit. She is willing to do hydro's when I ask and they do help for about 4 months, but I have a deductible and need to wait a couple of months before I can afford that. So I get down, and told my friend this weekend, I am soooo TIRED of this, I want my life back and I have a great attitude, but this is really getting me down. Anyway, we all understand your struggles here, so never apologize for anything.

[Kirs10]

Thank you all

I really appreciate all the input you have given me. I am not sure where else to get a third opinion from. There are very few doctors in Maine that believe in IC and I have seen two of them. I hoping that these patches will help, I am having a real issue with them right now though, I am sweating profusely.
I will keep you informed if I can find a new doctor.......and all .........Thanks again....

[humpieumpumkin]

Hey Kris!

I would reccommend DR. Marc Hodroff out of Fore River Urology in Portland. I have his number if you need it.

Erika

[Kara29]

Kris,

I'm so sorry to hear of the difficulty you are facing with all of these doctors and procedures. You could see other types of doctors to help ease some of the pain as well as working with an interested Urologist. Sometimes you have to sift through many Urologists before you will find one that is willing to try everything for you. There are lots of other things that can be tried for IC. I will caution you to try as many things as you are comfortable trying, first and see as many doctors that specialize in as many things as far reaching as Neurologists go. Write it all down, what works, who you like as a doc and who you don't and who you think has some answers and who does not.

I'm going to think of as many things besides Interstim that you may be able to talk to a good Urologist about. Forgive me if I name something that you have already done.

There are several combinations that are endless for other things to try, some combinations work and some don't. It's just like the puzzle. Keep at it and you may just stumble across the right fit. Some therapies are controversional and may feel wrong to you, if so don't be afraid to say so. Your doctors should work with you on this and understand if you don't want to try something. Have you tried Antihistamines, Antibiotics, Antidepressants, Prelief, Algonot & Cystoprotek, Instillations - DMSO, Cystistat, Heparin, Rescue Instillations, Nerve Stimulation, BCG (Bacillus Calmette Guerin), Cyclorsporine, Botox, Pelvic Floor Therapies, T.E.N.S Therapy, Diet & IC, Alternative Therapies, Estrogen & Hormone Replacement, Exercise & Fitness, Pain Management (The possibilities are absolutely endless with the combinations of pain medications you can try). You have so many choices and combinations with what I just mentioned and it can take years to find the right combo and doctor. Some of them take 6 months to a year to work or longer. Some of them need adjuncts (other meds added to them in order to make them all work efficently together.

The Disability packet is really worth it in the long run if it helps you get disability. Do you have any family or friends who may be able to help you out. You could always pay them back after you get it.

I hope you can find something else to try. Praying for some adequate pain relief for you!

Kara

[humpieumpumkin]

I'm sure you already have read this several times on the board, but the interstim is not for pain-bummer I know. My doctor said he wouldn't do the stim unless I did PT for the pain. He said I could have a slight decrease in pressure and prehaps that sudden urge pain, but besides that, I will still need pain management. I refused to do DMSO, and my uro told me he wasn't going to offer anyways due to my history. The right uro will work with you and respect your choices. A doctor my not be able to procede with surgical procedures until they try all other therapies, but that certanilly shouldn;t stop them from treating you other ways. I encourage you to try doctor Hodroff if your up to the travel, I know it aggravates symptoms. Hang in there!

Erika

[ponytail]

Kirs10 I hope you manage to try another doctor as with IC you need a doctor with an open mind, I think. Also one thing strikes me is that we ICer's measure our happiness with the lack of/management of pain. I know I I have a bad day painwise, I feel very low and right now I feel I've run out of happiness chemicals as it all seems like so much effort. If only there was a scientific way to measure pain then the medical world would take it more seriously on the impact of your life. I hop you can find a more positive doctor as you need one. By the way,why do people refuse dmso is it horrible?

[humpieumpumkin]

No it is not horrible. I chose not to have it for several reasons.

1. I work in an office and I don't feel like being harassed if I smell like garlic. I get harassed for wearing lotions and perfums as it is.

2.It can cause temporary raise in pain.

3.It can cause permanent damage to the bladder muscle.

Erika

[mary124]

Can't you do the DMSO treatments in the late afternoon? I know when I was doing them that is what I did (I also work in an office). What I did to help the pain is I took a pain pill before I went in for the instillations and when i got home, I took a nice warm bath and went to bed with my heating pad. This seemed to help me. Of course, if you have little kids you might not be able to do this unless you have someone to help out-- maybe your husband?
Hopefully something will work out for you.

[USPSham]

Outside of the box, perhaps?

Kirs10,

I can literally sympathize with what you're going through - I was there in 1997/98/99!! Actually, it took the THIRD Uro to even get diagnosed!!! The first said I had only a gynecological problem, the 2nd said I had tons of scar tissue from 2 previous abdominal surgeries and the 3rd told me within 2 minutes I had IC! I was in SOOO much pain by that point that I literally shook all over! Even though the 3rd Uro was quick to diagnose, he was also quick to dump me when his bag of tricks didn't work on me. Within a year (I'd already moved on from him) I heard he had dismissed all IC patients. Due to chronic kidney stones now, and only 4 Uro's in town, I am seeing a Uro in his office now, and anytime I mention IC he firmly reminds me I am there for a 'stone' visit, not IC!!! Ughhhh!!!

That all said, if you're in a rural/small town area, you might consider doing what I had to do........I dumped all Uro's and went to a D.O., in an SMALL town, about 30 miles from my city. He was recommended to me by my wonderful Pharmacist, who knew I had SEVERAL chronic pain issues. I'd not responded to Hydro-Distention surgery, DMSO treatments (actually got much worse, was very allergic to Elmiron, and my Uro refused ANY pain meds after 3 months!!!!!! The D.O. that was recommended to me planned out a 'Pain Management' course of action, on the first visit!! He was actually knowledgeable of IC and also the Fibromyalgia, Peripheral Neuropathy, Severe Chronic Myofascial Pain, Severe osteo Arthritis, etc.!!

I stayed with him until he just recently left his practice, to begin teaching at medical school! I've seen the D.O. that he turned his patients over to a couple of times so far, and I'm trying to think that I like him..........though not nearly as much as the one I was with for nearly 9 years!!! I'm sure going to miss him!!! Anyway, just wanted to point out that sometimes the type of Doc you're *supposed* to go to for particular problems just don't work out as they don't seem to be helpful to us. Also, there are MANY, MANY, well qualified Docs out there in "small town USA" that are overlooked! This first D.O. literally saved my life!!!! I have a very complicated case of not only IC (advanced stages of 'Classic' IC) but of several other diseases and illnesses, too. Hope you find the help you DESERVE, soon!

Hugs,
Sherry

[ihurttoo]

Sherry,

Your post reminded me of something I read on a message board for Drs a few weeks ago. The message board was for Pre-med students, med school students, interns, residents, and Drs. Anyway, of course when I went there, I zeroed in on the Urology forums. Well, there was a guy that posted there who was at the point in med school where he was getting ready to have to pick a specialty. So, he asked the Uros why on earth anyone would want to be a Uro, and what was good about there jobs. About 15 Uros responded to him. They ALL told him about the same thing: First, that there are very few true urological emergencies, so they hardly ever get calls after hours (even when they are on call). Second, that there are very few procedures or surgeries that they do that cant wait until morning and that the vast majority of them can be scheduled. Third, they said that they hardly ever have to deal with "drug seekers" b/c they can fix most everyone that comes in with a problem, and the ones that cant be fixed are usually cancer patients, so their oncologists take care of their pain meds. Fourth, they said that the majority of their practice is men, and most of them said that they chose Urology b/c they preferred working with men, and that about 85 - 90% of their pts are men. They also said that the money and hours were comparable to most other specialties, but that they didnt have the horrible hours and didnt have to deal with chronic pain patients or have to worry about the DEA breathing down there necks since they hardly ever had to r/x pain meds.

Boy, was this an eye-opener for me! After reading that, it made alot of sense to me why ICers have such a tough time finding Uros, b/c alot of them just plain dont want the tough patients, the ones who arent a quick fix. Alot of them went into Urology so they wouldnt have to deal with being called after hours or with chronic pain patients, or have to worry about the "drug seekers" or people wanting/needing pain meds.

Well, there are no quick fixes for IC patients. Also, most ICers will end up having to call after hours occasionlly when in a flare (especially if they dont have pain meds!) And also alot of ICers need pain meds. And lastly, most ICers are female, (and most other Urology pts are male). So, there ya go! For me, that explained alot when I read it, (even though I was enraged!)

I hope it helps you and others to see, that maybe it isnt YOU, maybe the problem is that certain Drs. just honestly dont want IC patients, and if they dont, then we are better off without them. We are better off with someone who truly has an interest in us and cares.

This is not to say that there are no caring Urologists, or that ALL Uros think that way or went into for the reasons that the URos did who posted there, but I definately think it could account for why some seem to take no interest whatsoever in IC patients and sometimes seem to almost try to run ICers off.

[USPSham]

NOT surprised at your findings!!

Ihurttoo,

Thanks for sharing what you read on that message board, and I am NOT the least bit surprised with the replies the Uro's already in practice gave this young student!! NOT AT ALL!!! In today's age of managed care (and it exists wheter or not you have an HMO!!!) a patient is taken through the 'ABC's' of their usual protocol of treatment for your problem - including Uros! If the patient does not respond and remains 'unfixed' after trying thing "C", then the patient is deemed either uncooperative, 'difficult', or as they deem many of us - merely depressed and in need of psychiatric help. Oh, forgot to put in the 'drug seeker' label some of us also get.

In **My** experience, the larger the clinic the Dr. is a member/part of, and the larger his/her partnership (# of Docs in their Department), the more "managed care" they practice!! Every great once in a while, you'll find that rare Dr. within a large practice that really is a caring soul and WANT to HELP his/her patients..........but they have are almost always also the new guy and will soon be as warped as the rest of them! Also, they pass you around to several other Docs in the clinic for each individual problem they can label you with. A prime example just happened to me. When phoning my so-called Uro's office (the one that will treat me for kidney stones ONLY and won't discuss IC) in March to set up my yearly 24-hour urine and blood labs, I was told my the receptionist that he'd not seen in in over 1 1/2 years and it was high time he had to sit down and talk to me.....a little surprising to find even a caring receptionist these days. Anyway, he walked into the room after viewing my standard KUB xray (Kidney/Ureter/Bladder) and asked if my left side had been hurting, then punched me in the back of the kidney and said, "I thought so". He took me to see my xray and showed me a long cluster of stones in the left ureter, just above the bladder. Being the last several were too big to pass, he said he'd give me a week to do what I could on my own.

In a week, I return, with another KUB showing no movement of the many stones. Being I was still not obstructed, he needed more conclusive proof of their impending doom to schedule the surgery to remove all the stones and sent me down the hall for a CT. I see him again in a couple of hours and he tells me that the Radiology Dept. has changed their minds........the 'stones' were not stones at all, but calcium build up in the lower pelvic arteries. However, my real problem was a huge cyst on my left ovary. I chuckled as he made this announcement as I have NO ovaries! He showed me the test and the 'cyst' and sent me to the front to book an appt. with a new OB/GYN upstairs.

I see the new OB/GYN in a week or so, and he puts me through the typical 'female' check-up. Via pelvic exam, he feels the cyst and gives me the plan and explanation of what could be happening. Long story short, we do nothing for 6 weeks and hope it ruptures.......or reabsorbs as he calls it. I see him again next week and if the cyst is still there, we do surgery........open the belly BIG time surgery. This new Doc really impressed me with his consideration of my comfort and asking all along the way if I have questions, but when finding a rash on my chest, he insisted I see the Dermatologist on staff there. He wouldn't let me try any creams or anything through him and scared me with the slight possibility of 'Inflammatory Breast Cancer' to ensure I follow up with the Dermatologist.........now I'm seeing THREE Docs in that clinic, when all I did was go CALL to get my lab work set up!!

Maybe I just haven't caught up to today's standard of practice of what they used to call medicine, but I'm sick to death of being passed from Dr. to Dr. to Dr., still with NO answers, and having to pay $50 co-pay to each one, for each visit. Even the Dermatologist had no answers, of course! Radiology makes mistakes REPEATEDLY at this place; one even saying my stent was in the right kidney, when it was in the left!!!! Every time they've done an IVP they said there were no stones in the ureter and I'd pass some within a couple of weeks to months!!! Perhaps the reason Radiology makes so many mistakes is because for 'patient convenience' you wait for them to evaluate your test(s) and send you back to your Doc's office with the written report and films in hand. They guarantee you won't wait more than 20 minutes for such reports! I want the Radiologist to take their time evaluating my results and that 20 min. includes the back up of reports they are reading along with mine!!!

Sorry this got to be such a 'rant' post, but I have to say I was glad in many ways to hear of what you read...........is what I've KNOWN for years but finally got admissions to back it up. I didn't receive REAL care, where I was listened to and my pain was seen as a SYMPTOM until I went away from the big cities, big clinics, etc. and went out into the RURAL area!! I can only hope and pray the PCP I'm now seeing (my long term one recently left his practice to teach at med school!) will do half as well as my previous one. Take care all!

Hugs,
Sherry

[Kara29]

Sherry,

I'm sorry to hear about all of your experinces so far. I hope the road turns around for you and you find the help that you deserve and need.

Kara