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Interstitial Cystitis
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cureic posted:
I was dianosed with I.C. June 2010 here in Alabama.I belive that I have had this I.C. for a long time because when I was living in Florida I was at the doctors and in the hospital a lot for years and they could not find anything wrong. My doctor ordered a ultrasond and they saw that I had cyst on my overies. I had the surgery and I still had alot of pain and burning when I used the restroom I used it alot. My doctors still said they could not find anything.I relocated to Alabama and saw my primary doctor and told him my symptoms he referred me to a Urologist that's when I had surgery and I was told that I had I.C. and that's where my pain was comming from. My Urologist referred me to the Pain Treatment center in Birmingham. I talked to the doctor there and I was told that he's going to do an Epadurol on me and there's a 40% success rate with this type of procedure. The medication that I am taking now is: 8mg Toviaz,25mg Hydroxyzine Pamoate,Amitriptyline 50mg,Tramadol 50mg.I had the DMSO bladder treatments that did not help me at all. I feel so lost I am very weak with this and the pain is worst then having a child because it starts with no warning at all it just hits you.I am 38 female. Please does anyone have any suggestions at all please because I really am doing a lot of research with no success.

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  • Does Epadural Help?
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CTBeth responded:
Do you mean epidural? Epidural anaesthesia is an
injection of anaesthetic into the space outside the dura mater enveloping the spinal cord.

What is going to be injected, and why?

Have you heard of a drug called Elmiron? I do not know the generic name or if it is still being used for interstitial cystitis. I recall it from the early 90s. It was said to repair the gag layer of the interstitium.

BTW, you do not have to post a poll with your discussion. No disrespect intended, but your poll makes no sense.

With interstitial cystitis, as with most pain syndromes there is not a one-size-fits-all (in parlance) medicine or treatment. I.C. is tough to treat. Yes, do all the research you can. Although many get relief from DMSO (Di-methyl-sulfoxide) it is unfortunate that you did not help you. Am I correct that it is introduced into the bladder via catheter and you hold it in for a while?

Please tell us about the epidural medication. Usually epidural anaesthesia is very short-acting.

I do not have I.C. nor have I researched it, so I am curious about epidural treatment since that involves the epidural space and I.C. involves the interstitium layer of the urinary bladder.

Good luck,

CTBeth
 
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cureic replied to CTBeth's response:
Bless,CTBeth this is my first time posting on Web Md I didn't no about the poll sorry. But I really don't understand the concept of an Epidural and bladder pain for I.C. but the doctor stated that he's going to numb the nerves because he thinks that's one of the problems of I.C.. I really want to no more about this I.C. because it is controlling my every move.
 
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CTBeth replied to cureic's response:
Cool, we're online at the same time.

I have heard a lot about IC even though I do not have it. I know that that pain is crippling.

A good place to start is with a google search. I was so interested in what you wrote that I am going to search it later, too. If I find any really good articles I'll post the link on this discussion for you.

The good thing is that the urologist sent you to a pain management MD straight away. One thing that has helped me through the years since my injuries is to write a list of questions when they come to mind. Bring this list to the MD at your visit. Get all of your questions answered.

The more we know about our injury/disease process,m the better we can advocate for our own care.

I'll look up that drug I had mentioned, Elmiron, in my nursing references and post it on this discussion- probably tonight.

I hope that you'll have the opportunity
 
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CTBeth replied to CTBeth's response:
(my comp messed something up and I couldn't complete my sentence)

I hope you'll have the opportunity to get all of your questions answered before your epidural treatments.

You are entitled to know the facts, what is going to be done, what is the expected outcome, what are the risks, etc. You also are entitled to discuss the alternative treatments. This is informed consent. I suspect you'll also get a lot of people on this discussion who know a lot more than I ~ so hang in there.

TTYL,

Bet
 
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cybil53 responded:
Hi I am so sorry you are suffering with IC, I too have had it for many years. I have not had the epidurals but I did go to an IC center for treatment.

I have been on Elmiron for many years and it does help me somewhat but if you don't have insurnace it is very exspensive. I went through a very extensive work up which included exploratory surgery and bladder biopsy. There are many different meds they can put you on to help to be more comfortable like vaginal valuim for one. I use a tens machine and went through physical therapy for 2 months and now I do it at home everyday. The therapy was very uncomfortable but I have to say it has really helped me. Diet is also supposed to be a big thing so you should check out the IC diet. Most women with IC also have problems with their pelvic floor muscle.
I have been on and off a few different meds in the last year. I am also on the Fentanyl Patch and breakthrough pain med for the IC and Fibromyalgia. Along with many other meds, I take an antibiotic before having intercourse as a preventive. If I don't take one I go into a major flare so that has been a huge help for me.

I have learned that you have to go to a doctor that specializes in IC otherwise you will get nowhere. Unfortunately there is no cure for this yet but there are things you can do to make it more comfortable. I would encourage you to go on the ICN site it has so much info and there is a blog you can read and post on. http://www.ic-network.com/forum/showthread.php?t=63879&goto=nextnewest
Also make sure you go to a doctor that knows how to treat IC I went to 3 Urologist before I found the IC Center. Good luck & hang in there I no what you are going through it is such a painful condition. Take Care!
Cybil
 
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CTBeth replied to cybil53's response:
Cybil,
Then you probably know what the epidurals for IC are about.
I was going to try to find out about this, but you probably know.

I do not have IC, but one of my good friends does and she suffers, although has said that she has been better since her menopause. Have you heard of this? I have been interested since she got unwell with it about 25 yr ago. She and I were both pregnant at the time; I was enjoying every day of it and she (Jayne) was miserable. She went through the DMSO "cocktail", lots of med trials, and ultimately has done well on Elmiron.

It may seem odd that someone who does not have it would have such an interest, I do. Jayne is an RN, too, and was disabled with IC pain for a few years before Elmiron.

Take care~ and I hope you're feeling well today,

Bet
 
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Caprice_WebMD_Staff responded:
Hi Cureic and welcome to WebMD,

I see you've already received a lot of help here. You may also want to post on our Women's Health Community and when you do, put 'Attention: Jane' in the subject line (Jane's our health expert there and she may have some ideas for you). :-)
Treat people as if they were what they ought to be, and you'll help them to become what they are capable of becoming. ~Goethe
 
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cybil53 replied to CTBeth's response:
CTBeth,
I just wrote a long Post and lost it! Anyway, I have not had the epidurals but I know there are many different kinds of pain blocks that are offered for IC. I will ask the next time I go to the IC Center.
I didn't think it was odd at all that you were interested in IC. Your friend is very lucky to have her in your life. It would be so nice if more Family and Friends would take the time to educate themselves on our daily struggles with Pain.
I have never heard of IC getting better after menopause. I am so happy for your friend that she is feeling better. I am 55 but I had a total Hysterectomy at age 28 so that won't happen to me. The DMSO cocktail actually made me worse so I don't do that. Using a Tens across my bladder and lower back seem to help me somewhat. Nothing takes all the pain away and some days are much worse than others. We can only keep hoping they will find a cure.
Take Care! Cybil
 
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CTBeth replied to cybil53's response:
don't you so hate that? More-than-a-few times I have hit "cancel" rather than "submit."

Help Web MD programmers, Haha!
I'll write more later.
 
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cureic replied to CTBeth's response:
Thank you so much for helping me in the research of I.C..I have been feeling bad and now checking the post.Thank you again.
 
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annette030 responded:
I am sorry to be the bearer of sad news, but I would personally not undergo any invasive procedure for pain management that only offered a 40% chance of success.

I would also ask the doctor exactly what his definition of "success" was. Often pain management doctors consider a procedure "successful" if only 50% of the pain is relieved. If that is his definition then only 4 out of 10 patients get at least half of their pain relieved with this procedure for this ailment.

I was not aware that they were doing epidurals for IC. I have Irritable Bladder Syndrome, so I have done some research for my own problems. I would ask this doctor how many epidurals he has done for this type of pain, specifically related to IC. My general opinion is that I would like a doctor to have perfomed 100 of the procedures he is suggesting for me. That is the learning curve for doctors doing invasive procedures in my opinion.

There are lots of other types of overactive bladder medicine besides Toviaz. I took Levbid, and Urispas. I remember the Urispas worked better. If the pain lasts a long time and you are taking pain meds like trmadol, the doctor could increase the dose or offer you a long acting version, or you could try opiates for pain. The problems I had with my bladder caused symptoms of a bladder infection: frequency, irritation, and intermittent pain. Nothing that I required opiate pain meds for.

When I started neurontin for my FMS, my Irritable Bladder Syndrome and IBS seemed to improve too. Not sure why. I also eliminated caffeine from my diet and that made a huge difference for me. I had read about that one myself, no one suggested it to me.

Talk this all over with your pain management doctor and your urologist, then do your research and decide for yourself what to do next.

Take care, Annette
 
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CTBeth replied to annette030's response:
If it was me, I'd try anything for a 40% chance of improvement.
This is a very personal decision.

I especially appreciated reading that Neurontin helped your bladder. Of course! IC is, at the end of the day a neurogenic phenomenon. Personally, I'd prefer to take Neurontin than opiates.

Now don't forget, Annette, just because we have a different opinion on the 40% doesn't mean that I don't adore you- as I do, LOL<3
 
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danielleray1999 responded:
hey girl i am danielle from louisiana and i have been going through the same thing for two yrs i didnt have insurance for a while and the only thing that i could get the free hospital to do was a dionostic laporscopic they found nothing but the multipul cysts on each of my overies they already found. i hurt so bad that most of the time i cant even get out of bed or off the couch. i cant get two doctors that tell me the same thing one said that the cysts wouldnt cause the pain and one doc says yes they will and that they wont do anything unless they get bigger than they are nomatter how much they hurts. i feel your pain i have looked everywhere online and i cant find what im looking for but now that i have insurance i dont know where to start except to see a gyn which is what i have been waiting for. can you email me anything that might help me any questions i should ask the doc to check for or something i need to know or do i have no idea what i am doing and no one i know has been through this i am lost and have no help. when i find out anything from the doc i will let you know what they say to see if any of it might help you. i have tryed vicoden and tramidol and it dose not help at all i was given percocet from the er and that is the only thing that helps with my pain the doc wont even put me on pain management through the er or the free hospital. me and my husbands prayers are with you and your family thanks for the help and the time danielle my email is rayndanielle@centurylink.net
 
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annette030 replied to CTBeth's response:
Everyone has to decide this for themselves, lol. I just would hope that the patient and the doctor are using the same language to define successful treatment.

I love neurontin, it has helped so many related symptoms of my FMS: irritable bladder, irritable bowel, and migraines too. All are somewhat neuro related. I think it is a great drug for me, but it doesn't work out that well for everyone.

I love you too, Beth, lol.

Take care, Annette


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