Cytotec for IC Pain

[chasingbliss]

My main IC symptom is pain - chronic bladder pain, urethral pain, and PFD-related pain. My interstims are controlling my frequency/urgency/retention, which is great, but I haven't been successful in controlling any pain. I have tried cystoscopy w/hydrodistention, various instillations cocktails, Elmiron (9 months), strict diet adherence, PT, acupuncture, pain killers from ultram to oxycontin, lyrica, elavil, etc. Nothing is helping with my pain. I have lived with this everyday for almost a year and it's taking such a toll. I just need to get control over it and am desperate to do whatever it takes.

I am reading and reading the boards, looking over the alternative/experimental treatments and came across cytotec and want to know how this med works on pain as I no longer have other issues.

Thanks for any info/advice y'all can offer. I really appreciate it. :)

[aprilchen]

Hi Jen,

I would be glad to speak to you about it if you are interested. I did it for nine months and my response was wonderful until I started taking fertility drugs and they found a Uterine Fibroid recently. I wrote an article that I guess might be used in the next IC Magazine that comes out.

-Blessings,
April

[TexasHoney]

I take cytotec for Hunner's ulcers. It seems to helping control those but I still have been having lots of flares recently.

[chasingbliss]

Thanks April & TexasHoney. I am seeing my urologist in a couple of weeks and am going to discuss this with her in detail. Do either of you notice any particularly bothersome side effects with this medication? I am aware of the fertility risks but my husband and I are not having anymore children so that won't be an issue. Just curious about any day to day stuff you may have to deal with.

April - during the 9 mo. you were taking Cytotek, did you find you could reduce your pain meds? My fantasy/hope is to be able to stop the pain meds altogether but it's so hard to imagine that at this point.

Thanks again for the info!!
:flower:

[aprilchen]

Hey Chasing Bliss,

I would say Cytotec is worth it. It did give me my life back, but you have to be patient with it. It made me quite nauseated and cold to the bone, but other than that.....well, it was worth it. The sad thing is, my symptoms have returned. But that is most likely due to the Clomid and fertility drugs. I do not ovulate right and we have had 4 miscarriages. The endocrinologist I see at WPAFB said it was due to inflammation and IC and that WHEN we are successful he will be putting me back on steroids. (Yay-get to get fat but I guess worth it if I can stay pregnant).

So, in a nutshell I would do it all over again. I did instillations of it for nine months and while hard, it was worth it. My husband is just 112lbs soaking wet so he enjoyed me being cold as opposed to being so hot all the time with medications. As for the pain factor, well it really did not help mine. It actually hurt to do it sometimes and that is why after I did it I usually took something for pain. But I would say hang in there because you must hold it in about 45 minutes (that was my recipe) and then urinate it out. Sometimes I couldn't so I would just cath again.

Afterward though (until starting Clomid), I was doing great. I worked the most I had ever worked with this disease. I did go off pain medications temporarily only to be put on Lidoderm and Ultram occasionally when it is bad. Lidocaine patches are a godsend.

Let me know if you have any questions. I wrote a story for The IC Optimist magazine about this so if you have any questions, please contact me at aprilannchen@rocketmail.com.

~April

Thanks April & TexasHoney. I am seeing my urologist in a couple of weeks and am going to discuss this with her in detail. Do either of you notice any particularly bothersome side effects with this medication? I am aware of the fertility risks but my husband and I are not having anymore children so that won't be an issue. Just curious about any day to day stuff you may have to deal with.

April - during the 9 mo. you were taking Cytotek, did you find you could reduce your pain meds? My fantasy/hope is to be able to stop the pain meds altogether but it's so hard to imagine that at this point.

Thanks again for the info!!
:flower:

[asIshallbe]

I will keep ya posted on it. Did you ever give it a shot? Hope you are recovering well. You are in my thought. :smile tee

[asIshallbe]

the more I read about it, the more is scared the living you know what out of me. It also said it can cause a stroke, and my aunt had a stroke 2 days ago, so there is no way I am going to take a med that says flat out, on its face that it can cause a stroke, amongst other things I have read about it. I am desparate at times, yes...but...I will not continue on this subject as it appears to be a touchy one.

[katie87]

please anyone who had taken it or knows about it share what you know? is cytotec a shot or pill what kind of med and what does it do????????????? I do want more children does it affect fertility?

[Snowden1]

I went to Cleveland Clinic and saw a doctor there - he was extremely arrogant (there are other nicer doctors there). He gave me a script for cytotec. I came home and researched it. I decided it was not for me. If you still have a uterus (which I don't) and are thinking about having more children - I would definately look at the studies done on this and read what people who have had it had to say. It can also be instilled, but usually the doctor wants you to take it orally first. Although, he said only about 3% gets to your bladder this way and you may need to come back in 6 months to try the instills. Again, I would really research this drug.
Teresa

[glassd18]

I took Cytotec for IC, but also for stomach troubles which is what it is originally for. It is only harmful to take if you are trying to get pregant or are already pregnant because it can cause you to have uterine contractions, and miscarry. I felt like my stomach was empty at times. If you start it I would try to take a small dose first. I even cut the 100mg (I think that's what the mg was) in half and then work your way up. There is a girl on here who had great success with it, but I don't know if she is still on the IC network, and if she still takes it, but it gave her her life back. We are all so different and what works for one person may actually flare another so you have to make sure you do one thing at a time, and give it some time. We are all so desperate for relief that it can be hard to do, but have patience with each thing you try. I was so confused, and still am sometimes, but now I know that the best thing I can do is watch my diet carefully first and foremost. The ID of the girl who took this drug successfully is Sacausa I believe. Good luck!!! There is another person too who had success here, but I can't remember their ID. Here is a post from Sacausa:

http://www.ic-network.com/forum/showthread.php?t=40160&highlight=saucasa

[maryla]

Snowden1,

I went to CC also and my thoughts exactly towards the uro you are mentioning!!

I tried his protocol for a yr, I did instills of cytotec 100mgs, lidocaine, sodium bi-carb, elmiron, and kenalog 4-5 times per day. Did nothing but numb my bladder for a very short period and let me tell you the side effects from the cytotec were hell. I don't care if it happened to be 90 degrees out side. I felt froze to death and after each instill my fibro hurt to the max.

I stopped all of his instills and just do reg ones at my uro office and I use the Gaba-IC about once a week. I'm going to try using something else soon. I'll keep you posted on that one.

So, my thoughts would be to never use it ever!!!!!!

Snowden1,

Have you been to one of his "group appointments"? I was there in 08 and did not receive any info for one this yr. Just wondering.
I found some of his info to be very contradicting!

Hugs and blessings

[Snowden1]

Mary,
They did call me for the group apt., but since I never took the drug I thought it probably would not be a good idea (haha). Yeah, he was a big jerk to me. He did not even examine me (he had his associate do it). Then he picked up the paperwork I brought in (my own personal info) with other doctors I had seen and info on cystoprotek and aloe vera. (All while I am being examined by the other guy). He ask me how much these doctors charge (if they are private pay?) Also, how much the supplements cost. Then he explained the cytotek as something natural found in the body, but my body probably doesn't make it. Then he told me to "relax" and go home and "have some wine." Also, I was in the room for an hour and a half before anyone came in to examine me. I had to keep getting dressed and undressed - so I could run to the bathroom across the hall.

Anyway, sorry to vent like that, but people shouldn't be treated like that. I am sorry about your experience - we all want something to work so badly.
Teresa

[aprilchen]

May I make a statement here about care at the Cleveland Clinic. If it is the Urologist I have, he is a wonderful specialist. He can have a brisk bedside manner at times, but his expertise in this area far outweighs any of this stuff you all have mentioned. So, about Cytotec: I did it for nine months straight, three times a day mixed with Lidocaine and Heparin. I want to say my dose was 100mcg crushed and dissolved into Lidocaine and Heparin instillation. I was off ALL pain medications until recently when I hurt my knee and now I have a frustrating antibiotic resistant kidney infection of some sort...(we should know the bacteria tomorrow or the next day and have more info on what it responds to)....but the thing with Cytotec is....yes, there are a lot of side effects. I wanted to give up a few times because being from the South in Alabama and moving to Ohio in the FREEZING cold weather, it chilled me to the bone, but I stuck it out and I am STILL glad I did.

No, it does not affect having future children. It, however, does cause and can cause m/c so if you're on it for a nine month period you need to make sure you are on a reliable birth control method. I had the Implanon rod inserted for the duration of that treatment. The effects of the medication....side effects...wear off after about a week after you're done with the nine month regimen.

I had a great experience with the "group appt." I had in July or sometime this summer at his office as I had my last hydrodistention on 8/19 and all told, the combination of those therapies has done well for me.

Am I off pain medications completely? No. Especially now, I am taking just Vicodin at night before bed with Ambien so I can rest since I have this Kidney infection, but I do hope soon that the antibiotic they choose is working well. I started Levaquin 500mg once a day three days ago and I feel some better, but I am still feeling the symptoms so I am wearing like two lidoderm patches on my back right now and one over my bladder. Those things are wonderful for pain and are NOT sedating.

Also, something else I see on here as a common theme is where people are taking medications such as Voltaren, Aspirin, Ibuprofen, etc. and my specialist at CC was right about that....that these medications exacerbate and make IC much, much worse...so they DO NOT use them. Their protocol for pain is Ultram, instillations and Valium, which they will prescribe, no questions asked. I get 10mg twice a day if I need it and I have needed it this week.

Anyway, I hope I answered some of the questions asked here and if there are more, please email me at aprilannchen@gmail.com.

-April

[aprilchen]

Oh, and check out the emedicine article here at the end of my signature. This is my go-to for information because it actually mentions the physician at Cleveland Clinic and his invention of the instill therapy. The only thing in that article that is definitely wrong is that it has references to using NSAIDs. When I first went to CC, I was on 800mg Ibuprofen and that was the first thing we stopped. Then he distended my bladder and though it hurt like no one's business, I don't care because he ordered enough I.V. medication to make me really comfortable. Anyway, we already have my next one scheduled for 2/10/10. I currently, by the way, instill Heparin, Lidocaine and Elmiron in my bladder three to four times a day. Also, they added an Oxytrol patch which controls urgency and frequency and it is awesome! Well, hope this helps iron out any questions. :-)

[Snowden1]

April, I'm glad you had a good experience and this worked for you. I hope you continue to feel better.
Teresa

[maryla]

Yes, I too love the group appointments and wish I had been called. But, I guess since I am no longer in contact with Maria, I'm guessing I didn't get the invite.

Yes, he is a great uro, And I'm happy that his protocol helped you. And I 2nd your position with the NSAID. It makes sense that they are notorious for messing up ones stomach, so I think it would apply to the bladder as well. He told me this as well, but I've always had problems with NSAIDS, so I 've never really taken them.

I do want to mention, that he would not give me heprin and I noticed that is one of the meds that he prescribed for your instills? Just makes me wonder?

Hugs and blessings,

ps, I hope that you are feeling better with the kidney infection!

[samik]

does the oxytrol patch help a lot with the urgency frequency problem? My main complaint is severe pressure on my bladder.

[glassd18]

That is a question I'd like to know too. I have frequency with pressure that comes back no long after I go.

[maryla]

I tried those patches a few yrs ago and felt like the patch was eating my skin so I took it off. Just about all the antispasmatic I have tried make me really sick. and I didn't feel like they helped me that much, so I stopped them all. And I have tried many. But we are all so different, they could help. My uro gave me samples to try first.

hugs and blessings

[aprilchen]

Maryla,

Heparin is a vital part of the instillation because it has something to do with protection of the urothelial layer within the bladder. That is part of his protocol, so that makes me wonder. What exactly ARE you using in your instills? I am not the "expert" on this by any means, but I do know quite a bit about it. My instills (prescribed by Dr. Rackley and his NP Maria) are three to four times a day:

1. 40,000 IU Heparin (ends up being 2 vials Heparin at 20,000IU each)
2. 50mL Lidocaine 1% Solution (this is one whole vial)
3. 100mg Elmiron (pull apart capsule and place in instillation)

I usually pre-mix my instillations and at least let them sit for a good thirty minutes to let the Elmiron completely dissolve in there.

Also, did they ever mention to you about using "gravity" with the catheter syringe when it is hooked into the cath to deliver the instillation? This is not something I knew about until recently, but I COMPLETELY remove the plunger from the catheter syringe and lean back on the toilet, take a deep breath and let gravity deliver the medication. Not "pushing" it in via the plunger in that syringe is gentler on the bladder.

Honestly, Maria is the resident expert there on the instills and I would call her for an explanation if you are still a patient as to why you did not get the Heparin. Sometimes, because they see SO many patients it could have been a simple oversight or even could be because of some other medication you are taking. Many times Heparin will clash with other meds and you just have to be careful!

Seriously, I would call her and ask for an explanation as to why....she is friendly and ALWAYS has returned my calls within a day or two of my messages and oftentimes the same day. Sally is also a great resource. She is Dr. R's assistant and can be reached at his direct number which is publicly known so I guess it is okay to write it on here: 216-445-5378.

Email me if you have anymore questions and I would be glad to help!!!

[aprilchen]

Samik and Glassd18,

YES! Oxytrol helps with that "urgency/frequency" feeling tremendously! I do not know what it does exactly except that I gave it a trial run for the first week and changed the patch every 24 hours. It takes a week or so to REALLY see a difference and then I started noticing that I wasn't having that urge to go constantly! Some people take it in pill form, but that did not work for me. I believe the pill is called Detrol LA or the equivalent. However, the patch works wonders! I can't believe how much that "feeling" has gone away.

Also, recently I was diagnosed with Fibromyalgia and was put on Lyrica 150mg, at night ONLY and because of this I sleep so well. I have had nights where I do not wake up at all to urinate anymore. For years, I woke up constantly and now all I take at night is 150mg Lyrica, 6.5mg Ambien CR and 5-10mg Valium (Valium prescribed by Cleveland Clinic). Anyway, it is awesome! I feel better than I have felt in YEARS!!! There is so much to be said about getting quality sleep.

Yes, catheterizing three to four times a day is a pain....because it is inconvenient but I have found being a "faithful instiller," has made ALL the difference. There is an article that I have in my signature field I think you might want to read. I stumbled on the information about Oxytrol when I was researching for my SSA hearing (which I won).

More information about Oxytrol is here: http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=oxy1904.html&contentName=Oxytrol&contentId=565

If you're interested in trying something like Detrol LA, you can read more here:
http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=det1840.html&contentName=Detrol+LA&contentId=240

If I can answer any other questions (of course, I do not provide OFFICIAL medical advice--because I do not have a license...just experience using these medications, please let me know). My email address is below and I am on here quite frequently.

Be Blessed!

[aprilchen]

Well, Detrol LA does essentially the same thing, according to my Urologist. Might want to check into that. I don't THINK Detrol LA is an antispasmodic. I think it controls "nerve impulses" that make us WANT to urinate constantly. It takes time though for any of these to work and if the Oxytrol was irritating your skin, then definitely I wouldn't wear it. Let me know if I can be of any further help.

[egilfillan]

I did not know that it was being used for bladder. I am taking it for colon (IBS-c) problems and have had zero side effects. I take 800 mg a day in divided doses. It is worth trying but it does take a while for it to regulate your system.

My bladder pain is going down but I thought it was due to other meds as well.

[glassd18]

@ Egilfillan re: cytotec it gave me gut rot even on the small dose. I can't imagine 800mg / day alothough I was given 600mg a day to replace acid reflux med that I could take due to my bladder. Maybe I'll try it again. I know it takes time to get used to it. What other meds are you on?

@Aprilchen thank you for the info. I tried Detrol LA at the beginning, and it made my mouth feel like the Sahara Desert, and I think it was making my hesitancy worse. Can't say for sure.

Sometimes I think I need to start all over at square one!!! The instills flared me so badly. I was doing Heparin, lidocaine, and sodium bicarb.

[aprilchen]

Hi glassd18-Well, they do say those meds DO cause dry mouth and I noticed chewing sugarless gum and drinking this water called "metroelectro" really helps. It is electrolyte water, essentially and not anything specially flavored. I found it on the diet aisle at our Kroger with the Kashi Products (which I am really, really fond of because they are all natural).

One final thought, starting over with a new plan MIGHT be a good approach, BUT you'd want to check into doing the instills WITHOUT Sodium Bicarb. I started doing them with it, Elmiron, Lidocaine and Heparin and then realized the Sodium Bicarb was burning me very badly. So after discussing it with my practitioner, he said just leave off the Sodium Bicarb.

Have you considered asking to add Elmiron to your instillations?

[maryla]

April,

Thank you for all your info and experience with your instills.

I was doing (per Dr. Rackley) Lidocaine, cytotec, elimiron, sodium bicarb, my reg uro added kenalog to the mix and I was doing them 3-5 times per day for over a yr and a half with little progress of relief. I stopped the cytotec after about 6 months because I could not tolerate the side affects. It was horrible. I would freeze to death even if I had 4-5 blankets piled on me and the freezing part would kick up my fibro, so it was a vicious cycle. And yes, Maria is on the ball. I just wish I had been invited to the group appt. I'm going to call her and see if I can go to the next one.

I no longer do that regimen at home. My new DO is trying more of a homeopathic regimen. I do instills of Chondrodin sulfate and sodium bicarb 2 x per day with distilled water. And the ONLY thing that I found to give me any kind of relief is the Gaba-IC protocol. Today I'll finish my last of the 7 day instills. I had a 5 week remission this past summer with low pain levels which has not happened in the last 5yrs. using the gaba. I'm so grateful that our ins pays all but our $10 co-pay.


So, I'm hopeful that what I'm doing now will heal my bladder.

I was thinking that since you do not live that far from me, maybe we can get together for lunch or something or just a good gripe session sometime. We could meet in Vandelia or Tipp City. That's probably about a half way point for us. I can't drive too far without my bladder killing me and that really would work for me. But I also don't get out much either. But I need to!

Hugs and blessings

Oh, his answer to me about the heprin was that he didn't know about the long term affects of it?

[glassd18]

@Aprilchen I did have Elmiron in my instill at first, but they said that it was probably the Elmiron that was flaring me. I was told that the preservatives in the lidocaine was more likely the culprit. I drink Sodium Bicarb to sooth my bladder all the time and it works wonderfully, but I don't know if there are preservatives in that either.

[aprilchen]

Hey glassd18-yes, it is likely something in that mixture that was making you flare, but I doubt the Elmiron is it. Lidocaine actually can do that and this is why Dr. Rackley always uses Sodium Bicarb with the Lidocaine and requests preservative-FREE Lidocaine. Sodium Bicarb is a natural substance so no, there are no preservatives in that. Elmiron did nothing but help mine, really. I had to STOP the Sodium Bicarb instills because they burned my Vulvodynia.

[glassd18]

I believe I have vulvadynia as well. Chronic itching and pain. It used to be just before my menstruations but now it's alot of the time. I have been using a perineal wash bottle after urination to help with that and it does. I didn't know that sodium bicarb could irritate it. Would it irritate it from drinking it as well?

[egilfillan]

I found where to send a Urine sample for Broth Culture Testing.

http://unitedmedicallab.com/form-data/services.html

I sent a baseline - when I didn't have a flare - and it came back as Group D strep. I am now on ammoxicilln with my other meds in place. My pain is going DOWN!

It costs $120 for the test & the analysis of what will kill it. My one Dr. didn't believe in the test, so I asked my general Dr. & she said what have we got to lose?? The test results have to be FAXED to a Dr. We are going to do a 3 month run of the antibiotic and then test again to see where we are.

Kind of intresting - the lab also does a regular urine test & it came back negative.

I have never tried instills. But I spend a year in pelvic floor physical therapy. It helped. Whatever causes IC also causes the connective tissue to stiffen. The physical therapy breaks the adhesions under the skin.

Good luck ladies - keep looking for a Dr. to listen.

Einstein said "Insanity is doing the same thing over and over again and expecting different results."

[Karen12]

My main IC symptom is pain - chronic bladder pain, urethral pain, and PFD-related pain. My interstims are controlling my frequency/urgency/retention, which is great, but I haven't been successful in controlling any pain. I have tried cystoscopy w/hydrodistention, various instillations cocktails, Elmiron (9 months), strict diet adherence, PT, acupuncture, pain killers from ultram to oxycontin, lyrica, elavil, etc. Nothing is helping with my pain. I have lived with this everyday for almost a year and it's taking such a toll. I just need to get control over it and am desperate to do whatever it takes.

I am reading and reading the boards, looking over the alternative/experimental treatments and came across cytotec and want to know how this med works on pain as I no longer have other issues.

Thanks for any info/advice y'all can offer. I really appreciate it. :)

Hi Jen:
I haven't been online for a year now as I've been busy at work and no time to do research. I have been diagnosed with IC for 3 yrs now and each year seems to be getting worse. Your post sounds just like me. I have had the same treatments as you and just undergone my second cystoscopy/hydrodialation procedure. This time the procedure didn't seem to take like the 1st time and my pain symptoms and frequency hasn't subsided to the point of comfort yet.
My urologist hasn't offered any other type of drugs such as what I read on the posts. Perhaps these are only available in the U.S. I am from Canada, so I've not heard of such from my doctors. Hmm...I'm at my witts end as well, frustrated, depressed. Work has become a chore to try to get to. Have been on sick leave since end of August and they are pushing me to get back. I work in an office, but spend more time in the washrooms than at my desk.

[glassd18]

Hi Karen,

Sorry to hear that you have been getting worse. Are you following the diet? I also have had trouble getting appropriate control of my symptoms, but I also do not always do as I should, and on those days things are much worse. I never did a cysto/hydro. I have had a regular cysto just to make sure that there wasn't anything else going on. My bladder looks pristine with a regular cysto, but you usually can't see the irritation without doing the hydro. Anyway I am very sensitive to meds and diet. As the things that are suppose to help sometimes hurt. The one thing that has helped me alot is Ativan (Lorazepam) which is a benzodiazepine which helps relax the muscles for me at betime so that I can get a good nights rest. It also helps a bit with the pain. I only take it at night though for sleep, but it can be taken throughout the day, but it can make you drowsy so you'd have to see how it affects you. Sleep is very important. Without it it's hard to get through the day especially if you are in pain.

Here is an article about Cytotec that Jill put on the boards quite a few years ago:

http://www.ic-network.com/forum/showthread.php?t=11587

I hope and pray that you (we) find relief from this hideous disease.

Hopefully your employer can understand your situation. It is difficult to explain and even more difficult to understand if you don't have it.

Another medication that may help if you haven't already tried it is: Prosed, or Urelle. These help by numbing the bladder. You can take it everyday. It can be quite expensive. I also drink baking soda: 1/2 tsp in 4 oz of water up to 3 times daily, but do not do this if you have to watch your sodium intake or have high blood pressure. I do not have this problem. It helps to quell bladder flares. FYI it doesn't taste great!! You could also do Uristat or AZO which is usually sold in pharmacies for a couple of days to help take the edge off, but this med can't be used long term as it builds up in the system. At least you could have some time without pain!!! Well that's all I've got for now. Hugs Di

[chasingbliss]

Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board. :confused:

glassd18 - Someone else recommended Ativan to me b/c I am having a horrible time sleeping. I am going to talk to my pain doc about it next week when I see him. You are right. When you're not sleeping, the pain is 100 times worse.

I wish some little bit of relief to everyone.....:grouphug:

[maryla]

[QUOTE=chasingbliss;514537]Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board. :confused:

Karen,

My DO has me on a low Oxalate diet for my fibro and I can tell you it has gotten a lot better since I have been on the diet. You might want to check it out, Oh it is also helping my vulvodynia a ton too!

hugs and blessings

[egilfillan]

My osteopath suggested a different urine culture test. The Broth test. We figured what have we got to lose. Mine came back strep –group D strep to be exact. I have been on amoxicillin 250 mg 3x’s a day for almost a month now and my pain is going down. Is it gone? No- but I no longer need Tyl3.

My urologist was not willing to try it. There wasn’t enough research on it. But, all I know is that I am feeling better. We figure 3 months on amoxicillin. 3 day break, test again and 3 more months on amoxicillin after I have no more bacteria to make sure it doesn’t come back. I read that one lady had multiple bacteria present in her bladder and another had layers of bacteria. Each test came back with a new bacteria.

An interesting thing is the lab does both the dry test (agar plates done in every hospital lab) and the wet test (broth culture). My dry test was negative and my broth test was positive. Science alert: one is gram negative bacteria and one is gram positive bacteria. It just makes sense that if the bacteria like a place that is warm and moist that it would show up on a culture that is also warm and moist.

Go to http://unitedmedicallab.com/form-data/services.html

It costs $120 for the test & the analysis of what will kill it.

I would also recommend physical therapy to everyone. Make sure the PT person (mine was female) specializes in IC / pelvic floor pain. And, my insurance paid for it.

IC causes the muscles to shorten b/c of the constant pain. Just like you want to curl up into fetal position, so do your pelvic floor muscles. This pulls your hips out of alignment. The other thing IC does is it causes your connective tissue to harden. My PT would do myofacial release at trigger points, - break the adhesions between skin and muscle.

Good luck ladies - keep looking for a Dr. to listen.

Einstein said "Insanity is doing the same thing over and over again and expecting different results."

[aprilchen]

Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board. :confused:

glassd18 - Someone else recommended Ativan to me b/c I am having a horrible time sleeping. I am going to talk to my pain doc about it next week when I see him. You are right. When you're not sleeping, the pain is 100 times worse.

I wish some little bit of relief to everyone.....:grouphug:

Hi Chasing Bliss,

One of the things I notice on your medication profile is that you're on an NSAID called Voltaren. Cleveland Clinic vehemently opposes using ANY NSAIDS because even one dose can cause irreparable damage to the bladder lining. (of course, I am not a medical practitioner and I can only share what Cleveland Clinic has told me). But recently in a Group Shared Appt., Dr. Rackley discussed the implications of even ONE dose of anything considered an NSAID. There are quite a few medications considered to be NSAIDS and I know from my own experience when I first saw Dr. Rackley the first thing he did was STOP all meds that were NSAIDs. At the time, I was on 800mg of Ibuprofen for pain and something else that had a narcotic and and an NSAID. Here's a link to a list of NSAIDs: http://www.lyberty.com/encyc/articles/nsaid.html (http://www.lyberty.com/encyc/articles/nsaid.html)

Are you on Voltaren for IC pain? If so, I'd speak to whomever is prescribing it and I have an article that was sent to me regarding the use of NSAIDS. If you will email me I have the whole article that discusses a case study. But here is the important part the legitimates STOPPING ALL NSAIDS when you have IC.

Differential Diagnosis

As previously mentioned, the diagnosis of IC/PBS is one of exclusion. There are a number of conditions that must be considered in the differential diagnosis of a patient with possible IC/PBS, including:

* Urinary tract infection
* Overactive bladder
* Endometriosis
* Bladder carcinoma
* Drug effects: cyclophosphamide, aspirin, NSAIDs, allopurinol

Urinary tract infection (UTI), endometriosis, and overactive bladder (OAB) are relatively common conditions; the other conditions listed are rare but should be considered in patients with relevant findings, such as microhematuria on cystoscopy. Note that cyclophosphamide, aspirin, NSAIDs, and allopurinol are associated with a nonbacterial cystitis that resolves when the drugs are discontinued.5 Of course, two or more of these conditions can occur concurrently.

I can say it took about a year for my bladder to get tolerable after stopping the NSAIDs. Though, I have good days and bad days like any other IC patient. I catheterize three to four times a day...so it can be quite intimidating and a lot to deal with, but there is no cure for IC, just comfort measures. I guess that is why we must all pray for more funding for research to find a cure. I KNOW in my heart that there is something out there that will CURE this horrible disease for us all and it just has not been discovered. That is why I continue to hold out hope.

God Bless!

[chasingbliss]

Hi April! Thanks for the info. I do need to go in and update my signature b/c I am off the Voltaren. I was prescribed that early in my treatment for my tailbone pain after my pain MD took some back x-rays and found arthritis in my spine. I took it for a while but discontinued after determining it wasn't effective in managing that specific pain.

It's really good to know this b/c I had no idea! It's a bit disconcerting that neither of my urologists (previous and current) have mentioned this to me and they knew I was taking the Voltaren for almost 8 months. :-(

Thanks again for taking the time to share this information with me. I really appreciate it. You're awesome! :-)