In Limbo

[BugJem]

This is my first time posting. I've visited here several times since last week when I was told by my gyno that he believed this is what I have. I've been going back and forth between the gyno and the urologist since Aug 2003. Finally, after calling the gyno in tears feeling like I'm a freak and that no one understood me....I went back in and he had me answer a list of questions and if you had a score of at least 10 it was a good chance that you might have IC. I had a 23. He sent me back to the urologist who has told me that IC is not something he knows a lot about. He wants to try DSMO. I feel like this is not my treatment plan of choice. DO I HAVE A CHOICE? He says no. However, as I read many, many posts, it seems there are other choices. I am in the midst of my busy season at work and can't run to the doctor every week or two to get this done. The nurse told me today, that they are going to try this and that they will know after the first time if it's going to help me or not. IS THIS TRUE? From what I've read it takes about 6 times. I feel like they are not taking me seriously and haven't over the last year. And now finally when I have a bit of hope that I'll get some answers...I'm still getting the run around. I'm only taking Urell and Prosed (I think that's the name) for the burning. And Macrobid after I have sex. Well, sex at this point is practicly out of the question because I suffer so bad for days after it. Before coming here (suggested by my Gyno) I thought I was crazy. I thought I just went to the bathroom a lot. I didn't realize that going a minimum of 18 times a day was abnormal. I've been complaining that my stomach was bloated and about the burning and the lower back pain and pain in my hips which is always worse the few days before my period and a few days into my period for over a year. No one listened and I really just started to keep it to myself because I was told nothing was wrong with me. I guess there is no quick fix..I'm just anxious to feel better and be myself again.

[dyno]

Hi, :welcome: to the ICN. You will find lots of support here and hopefully some information that will help you out.
First of all, if you haven't read it you might want to look through the Handbook http://www.ic-network.com/handbook/ from this site. You will find a lot of information regarding treatments and diet which is a big help to many IC'ers.

As far as DSMO, that is not the only treatment and from what I understand it can take more than one treatment to know if it will help you. There are oral medications you can try. If your Dr. is not real knowledgeable about IC, it might be time to see if you can get another opionion from a different urologist. There is also a book that you can buy from the ICN shop, http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&pid=icsg, The IC Survivial Guide that is also a big help and you can also take it with you to Dr. appointments to discuss options with your Dr. along with stuff you can print out from the boards.

One thing you will learn with IC, you become your best advocate for your care. Speak up and let your Dr. know if you aren't comfortable with something.

If there is anything else we can help answer we will do our best. We are not Dr.s and can't give medical advice but we can maybe steer you in a direction that you can discuss with your Dr.

Again, welcome to the ICN. :)

[ICLori]

Welcome to the ICN, this really is a great place!

I'm sorry that you have this disease, but I always say, the hardest part is the part before you get diagnosed. Once you get diagnosed, then you start trying treatments, and you are that much closer to getting better! Most IC'ers are comfortable most of the time, once they find their "magic" drugs I like to think of them as, LOL!

But sometimes it does require a lot of patience. You might have to go to several different doctors before you find one that is very knowledgeable about IC and also very compassionate (it's important for IC docs to be both!) You might have to try several treatments before you find the one that works for you. And all this time, you are uncomfortable, as you are now. So this is a disease that surely tests a person's patience! I completely understand how you feel about wanting to be better right now and get this disease behind you.

Some people are lucky and get back to normal with their first try at medications, but for others, they have to try different meds, or they get better on, for instance, Elmiron which takes many months (6 or more) to fully kick in. So please be patient and no matter what, don't give up!

Jolene's great post was absolutely right on the mark, it may take several DMSO treatments before you feel the effect (I have even heard of it taking 6 treatments or longer), and there are many doctors who try various oral medications before they try DMSO.

I find that a bit frustrating, about doctors. Each doctor has his or her own favorite list of medicines, and as a patient, you probably want to try every treatment available, until you finally are comfortable. That's where it takes some real persistence. It's awful to have to fight a battle when you are sick, but I'm afraid sometimes that is what it takes when you have IC. If your doctor won't let you try the other standard meds for IC (Elmiron, Atarax, Elavil) or any of the other probably dozens of meds that have each been shown to help a few IC patients, then it's probably time to shop for another doctor. Please don't let any doc tell you "just learn to live with it" because you deserve better than that!

Blessings, Lori

[BugJem]

Thank you so much for your reply! It certainly does help to know I'm not alone and that what I'm going through is very real. I was tired of hearing that nothing was wrong with me. This site has done wonders for my mental state!!! :bow:

[vm]

I think many doctors try less invasive treatments first. My doc wanted to try oral meds before DMSO. The oral meds worked after a period of time so I have never had the DMSO.

Have you tried the IC Diet? There is information about it in the handbook. It is a simple (but not easy) way to make a difference in your bladder.

Hope to see you around. :)

[Trishie]

Hi BugJem!
I was diagnoised on 10/21/04 by cystoscopy/hydrodistention. The uro also gave me a DMSO treatment while I was under the anesthesia. I am on elmiron, ditroplan XL, urised and estrace vag. creme. That was my first treatment (I go back for follow-up on Nov 19th), I don't know if I will have to have more instills or not. I have all the symptoms you have.
And I can say that for me the DMSO has really helped me, it has cut down the times I go in a day by HALF. The urgency is better also. I had treatment on a thurs, I had friday off (Dr told me to take it off before I had the surgery), I went back to work Monday. It was a pretty ruff week, I was really sore, but now after 3 weeks I am feeling much better. I would do it again. From reading the boards sometimes it helps and some people it doesn't.
I hope this helps you

[Katrina]

:welcome:to the ICN!
Sounds to me like your doc doesn't know what he talking about. Not everyone does installations ...please realize that you can learn to do them at home to yourself. If I were you I would want a different doc though.
You are right on how long it can take to get help from DMSO
You are also right on different treatments. You will see other things listed in the handbook Jolene gave you a link to.

Even in installations DMSO is not the only choice...and is one of the more painful choices (be forewarned) Heparin is less painful.

Since you are looking for a good treatment for you I will give you another list of them.
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

I am very glad you found us. If there is anything more we can do for you please let us know. I hope you feel better soon.
:grouphug:

[ICNDonna]

I'm thinking you may benefit from seeing a different urologist for a second opinion.

I am on a monthly DMSO schedule, but when I started it was with eight weekly treatments. It is just not accurate to say that you will know after the first DMSO if it is going to help. My first few actually caused me severe pain for several days after the treatment. The pain was bad enough that I was ready to stop the treatments when one night I slept the whole night through. That was enough to convince me to continue. I have pretty well settled down to one or two bathroom trips each night, which is a vast improvement over the time before DMSO.

There are many treatments available for IC. I suggest you read the information in the Patient Handbook so you will be armed with information when you next see your doctor.

Warm healing thoughts,
Donna

[Sarojini]

I totally agree with Donna's suggestion that you might benefit from seeing a different urologist, preferably one who specializes in IC. Try looking on the ICN's physician listings at http://www.ic-network.com/md/careproviders.html to find one near you. If there isn't one listed here, then try the ICA (Interstitial Cystitis Association) Physician Registry -- it's at http://www.ichelp.org/AskTheDoctor/physicianregistry.html. Just type in your name and address info there, and within 48 hours a Patient Advocate will provide you with a list of all the IC Specialists in your state that they have registered.

You're right, DMSO doesn't work after the first treatment; generally doctors start with a series of 6-8 weekly instills, and many patients don't start feeling better until around the 4th one. Others don't start improving until 3-4 weeks after the whole series is over. And others need to go back monthly to maintain the relief after the initial series, as Donna has mentioned. And, unfortunately, for some of us (like me), DMSO does not work at all, and just seems to make us miserable -- I had a uro much like yours who swore by DMSO and refused to believe it did not help me, so I ended up switching uro's and switching treaments in the process.

Good luck -- and make sure you follow the others' advice -- if you are uncomfortable with a suggested treatment, let your doctor know. Ask questions and be vigilant! It's your body, and you deserve a say in how it is treated :)

:grouphug:

[BugJem]

Thank you all for your advice. I'm feeling very confused and it's getting the best of me. I get so uptight over it that I send myself into a anxiety attack. I'm just frustrated and as I'm reading here, it's normal. There is much for me to learn and understand. I do feel I need a more compassionate doctor one who understands this disease and who is willing to allow me to have a say in my treatment options. Which I don't feel he is doing. He did the cystoscopy almost a year ago and didn't figure this out then. I remember him telling me your bladder looks red and irrated and he said..maybe you're just not empting your bladder you need to try hard to empty it. I feel he's only acting on this because my gyno gave me the quiz and feels certain that this is what I have and insisted that I go back to the urologist and give him the quiz. He clearly told me he doesn't know a lot about it. In business I'm a very strong person..but when it comes to this, I seem to be incapable of standing my ground. I say what I feel and they belittle me and then I'm still going along with them. And as I have for the past year, I'm just allowing them to make me feel like this pain and discomfort is all in my head. :bonk:

I have a question...Trishie mentioned, hydrodistention..what is that?

Thank you all for your positive feedback and help. It feels so good to have someone understand what I've been dealing with. I don't have it as bad as many here and feel a little guilty complaining when I read some of your posts.

Have a happy Friday.

[Sarojini]

Hydrodistention is a procedure usually done in the hospital under either general or spinal anesthesia. In the procedure, the doctor overfills your bladder with water or saline (which is why you need to be anesthetized for it -- it would hurt too much otherwise). Then, the fluid is drained and your uro will look at your bladder again. In typical cases of IC, pinpoint bleeding spots called glomerulations will be visible on the bladder wall, and any ulcers (called Hunners Ulcers) will be very visible. Then, you doc will usually refill your bladder and leave it distended for a little while (8-10 min) -- this is called the therapeutic distention, and about 50% of IC patients get significant relief of symptoms from this part.

The hydrodistention is generally considered the gold standard for diagnosing IC, since the glomerulations generally aren't visible during an in office cystoscopy.

You can read more about it in our Patient Handbook (http://www.ic-network.com/handbook)

:grouphug:

[BugJem]

My Urologist did the cystoscopy in the office and filled my bladder...I was in agony...I'm wondering if he also did the Hydrodistention too. I remember telling him I can't take this...don't fill it up anymore...This was over a year ago and I was crying and coming off the table. They told me that it only hurt so bad because I had a very narrow urethra. The nurse told me that some urologists do the procedure in the hospital under general...but that he doesn't. I remember him telling me that my bladder wall looked red and irritated. He also told me I'd feel better in a while after having this done, he said he stretched my urethra. ??

I think I need to see someone who specializes in this and maybe start all over??? Have that done again to confirm what I feel is the obvious. I'm just so upset that it took this long. Thank God for my Gyno who recognized this.

Can anyone tell me if your periods are worse...in regards to cramps and pain? I had my period for two days and it went away only to come back 2 days later worse than before with cramps that I can't begin to describe. Is that a IC signature?

Thank you all for your information and support. You've been wonderful and comforting. :)

[Katrina]

Yikes....sounds like maybe you did have some hydrodistending done right in the office. Sounds like specialist may help.
Most of us have our IC symptoms get a lot worse with our periods. More severe cramping can be part of that at times.

[ibtracy]

:welcome: to the growing ICN family. My first and most important suggestion after reading your hydrodistention reply is to find another urologist, call around in your surrounding areas and just be up front and ask if they deal or are knowledgeable with IC? Keep calling. I finally had to go to a different city altogether, 90 miles from home, but it's worth it to find someone who knows what they're doing. I'm so sorry you're going through all this! I've been through the horror of going to someone who said they knew all about IC and didn't so I really sympathize with you. I wish you the best of luck on your urologist hunt and use the websites that Sarojini gave you, they might help. :grouphug: Sending you a supportive hug to get you thru your doctor search. I hope tomorrow is a better day and you find a different doctor. Keep us informed, okay?

Tracy