my introduction

[ellenmarie]

hello everyone! my name is ellen, and i thought i would introduce myself to this community! I am 24 years old and was diagnosed last year with IC.

about two years ago, i started getting uti's CONSTANTLY. or i always had assumed they were UTI's since antiobiotics seemed to treat it. i couldn't even understand how i got them. i wasn't having sex, and i still got them. and i have always wiped from front to back since the very first UTI i got. Hell, these things are painful! I wanted to do anything I could to help keep them at bay. still, these UTI's persisted. i would finish my antibiotics, the pain would go away, and the next thing i knew, i had a UTI again. i was told by my doctor that some women are just prone to UTI's, so i never thought more of it. i was just bummed that i happened to be one of the women who are prone to UTIs. until finally, i got a uti that didn't go away even after multiple trips to the doctor, and multiple antibiotic prescriptions. my doctor then suggested it was OAB, and gave me some samples to try. these did not help either, so he referred me to a local urologist.

i went to a urologist to see what he thought. during the weeks of antibiotics, and OAB samples, i did research on my own and had a sneaking suspicion that i had IC, and told the urologist that is what i feared was my problem. I had a cystoscopy done, just too look inside of my bladder and see if the wall was healthy. that was SO painful, i can't imagine enduring the other treatments i have heard about. from the cystoscopy he said my bladder wall looks fine and healthy, ruling out other problems (such as cancer, i suppose?). he gave me a bunch of medications to try - none of which worked at all. when i came in for a follow up he told me he assumed it was IC due to my symptoms and lack of infection and lack of complications from the cystoscopy. he told me he didn't think the bladder distention would help me since I am so young. He also gave me a name and number of a doctor in waco texas who does treatments that are not FDA approved but have significant promise. one of the treatments the guy offered was to have botox injected into your bladder, and the other had to do with actually fusing your nerves (or something like that!) so that you just don't feel the pain anymore. the entire experience totally freaked me out. i am only 24 years old (was 23 at the time), and have never had a broken bone, or even stitches. and i have no tolerance for pain, hence, i'm a giant baby ;D horrified, i went home and just started to deal with it on my own. i also do not have health insurance, so these treatments are feasible to me anyway.

then... it just went away. for MONTHS. i was so relieved. i thought maybe it was all in my head. this year, it came back. oddly enough, it struck again around the same time as last year (and i realized yesterday that my constant UTI's I had, were around this time of year as well.. very strange). i nearly forgot how painful and delibitating it is. i can't sleep at night. i feel in constant pain during the day, but at night it is unbearable. i keep a heating pad on my pelvic area, and wear those super thick menstrual pads because i am so terrified of peeing on myself and am too embarrassed to by adult diapers. i am about to be 25 years old. how in the world can i wear diapers?! how my boyfriend continues to love me is beyond me. the worst part for me is the pain, particularly at night, and the constant fear of wetting myself keeps me up at night. i'm so exhausted...

i am going to the doctor tomorrow to see if i can get any medicine to help with the pain, and to help me sleep at night. I have read about elavil, and how that has helped some people. I would love to hear any experiences with this drug, or any other medications that have helped. Since I don't have health insurance, any sort of invasive procedure is just not something I can afford. though.. i hope to get health insurance eventually, but as a college student, i just don't have the funds to do so now.

Yesterday was one of my lowest lows. I had no sleep the night before, and just felt like "how can i accept this?". I stumbled across this network and I cannot even put into words how comforting it was. to see how many other women are dealing with this, and are still optimistic and enjoying life...! I feel great today. I feel like I can handle this and won't let IC win. Yesterday I was completely defeated, and today is a new day. I'm so thankful I found this place. I don't know of any other 20-something's who have to worry about wetting themselves during a simple car ride.

I do have a question - I know many women can't sleep, like me, due to this. How in the world do you deal with a lack of sleep... AND no caffeine! I have yet to change my diet (though I did last year before it went away for a few months), and I know caffeine and spicy foods are going to be extremely difficult for me to give up. How did you guys do it? I am ready to be inspired by all of you :smile tee

sorry for the novel and much love,
ellen :)

[SharonA]

Ellen...I am so glad you found us. :welcome: to the ICN...:)

I am wondering is your uti-like symptoms are connected to Spring Allergies since they happen at this time of year??? There have been Members who say that flares increase when everything is budding and blossoming. Maybe you should talk with your doctor about this possibility.

About the IC Diet...Once you make the emotional and intellectual connection between your symptoms and your diet, changing your diet becomes much easier. In the beginning, I had a difficult time of accepting that I could not eat oranges. After all, they are good for you and are so delicious, right? Then I read the information available on this site regarding diet and decided that I would never eat another orange ever again. Now I feel that there isn't an orange grown that is worth risking having the symptoms of extreme pain that I suffered with when I was first diagnosed. They no longer tempt me. I feel that way about any food/drink that I have problems with. I never want to be in that kind of pain again and will do anything necessary to make sure that I am not.

Take a look at the same information about the connection between diet and symptoms I found in 2002. You can find the link to the IC Diet in my signature below. You just might have the same ":idea:" experience I did when reading it.

You will also find the link to the Patient Handbook in my signature. Reading that was a real eye opener for me.

(((Hugs)))

[ellenmarie]

Thanks so much Sharon for your advice :)
I thought it was very strange that my flares seem to occur around the same time of year as well. I will bring that up in my appointment tomorrow, maybe an antihistamine would help. It seems like my flares happen the first half of the year, and the second half of the year is problem free. So I suppose I should look at this in a positive light and think about how I have half a year pain free :)

I definitely want to subscribe to the IC Optimist and the newsletters! I think these will definitely help me to keep thinking positively.
I just scoped out the diet and am bummed.. no chocolate?!! Oh my goodness! ;) This will be very hard for me to commit to, but I think it will be worth it if it helps the pain subside. Not even chocolate is worth the pain!

Thanks again Sharon, I really appreciate your links and insight. These helped a lot!

[Goldfinch]

Ellen,

What doctor are you seeing tomorrow? A uro? It sounds to me like you were given some haphazard meds and tried them all at once, but you didn't elaborate on what they were and how long you took them. There are many meds that can take a while to kick in; some of the anti-spasmodics like detrol are that way, so you have to give them a good trial.

There are exceptions to every rule, but basic IC isn't typically associated with incontinence. OAB often is, but isn't associated with pain. Before you see the doctor write down all your symptoms and your questions and read as much as you can in the handbook, about the diet, etc.

Since IC has an autoimmune component, antihistamines are often prescribed and can be helpful. That's a good suggestion above to ask about that. Hydroxyzine is one that works for many (generic for Atarax) and isn't expensive. Other over-the-counter antihistamines can also help.

Elavil is worth asking about, for sure. It is an anti-depressant that is also a common med for IC, mainly for it's OTHER properties. Those include an anti-histamine, an anti-spasmodic, a sedative, and an analgesic for pain. In addition to that, it has a side-effect that might be useful for leaking: retention. Ask about Sanctura as well, which might help with incontinence.

I completely understand your reluctance for further invasive testing. It is possible to be diagnosed and treated for IC after ruling out bladder cancer (cysto did that), simple OAB, stones, etc. Your response to meds can be diagnostic and so can your response to the IC diet. If you followed it strictly for several weeks and saw some benefits, that would be an indicator that you have a distressed bladder lining, which is pretty much the defining symptom of IC.

[glassd18]

Welcome Ellenmarie!!! Thank you for sharing your story. I take Lorazepam before bedtime which relaxes my muscles, and also helps me sleep. I sleep with a magic bag (bean bag you can heat up in the microwave or put in the freezer for cold therapy), and that helps too. Also there are other meds that can help so don't give up until you find what works for you!! The people here are wonderfully helpful, and were my Godsend when I was first diagnosed. Good luck, and keep us posted as to how you are doing.

[ellenmarie]

Hi Goldfinch!
Thanks for the medication information! And as well as everything else :D
To answer your question, yes, I was given several medications - but did not take any at the same time (unless instructed to). My urologist and my general physician gave me several medicine samples to try for two weeks at a time (some only a week trial) - and then to note the effects and then to move on and try the next. That is why I had so much time to go online and research as much as I did!

I know I did try detrol, and another OAB medication, but to no avail.. But maybe I truly didn't give them enough time to help. I will mention that to my doctor tomorrow. I tried two types of OAB medications, but I can't remember the name of the other one. I believe I took detrol the longest, because my general physician is who gave me samples of this, and my uro did the same afterwards as well as another OAB medicine. I had several medications, and wish I could list them here as I have seen other people do, but I don't remember, nor do I have the boxes for them anymore. I held on to them for a very long time, but I lost my house (I was only renting thankfully) and nearly everything in it in Hurricane Ike in September... Though that ended up being a blessing in disguise, so no pity party about that from me :) It's been about a year since my uro gave me these samples, I wonder if I called if he would have an idea of what I took?

I am seeing my general physician tomorrow, which I know is not the same as seeing a urologist... I guess I just feel more comfortable with my general physician since Ive been seeing him for many years. I do hope I am not wasting my time though... I saw there is somewhere to find good uro's on this site, so I may investigate that since I know I will need to become good friends with him or her :) hehe.

Again I really appreciate all your offered information! I have read so much about IC this week, and definitely plan to read more before my appointment tomorrow. I already have a list of medications I want to ask about. Listing all my symptoms is another great idea. This site has been so helpful, and inspiring. I've already bought a book recommended from this site, and plan to subscribe to the IC optimist as soon as I get paid. I'm excited to stomp out IC and be in charge of it instead of the opposite. Diet will definitely be my next thing to tackle, though I don't know how optimistic I will be about that ;)

Ellen

[ellenmarie]

Thanks for the welcome Glassd18 :) I'm really falling in love with this place!

I've heard about the bean bag, and also about the seat cushion, which I am very interested in. Car rides are pretty painful for me, and being in Houston... there is no escaping it! Traffic is here all day long!

P.S. may I ask you how you put a picture in your profile? I tried to figure it out with no luck..

[KarenAnne]

:welcome: Glad you found this website, it is so great!

[VickiB]

Hi Ellen,

Adding another :welcome: to ICN!

It is thought that IC isn't typically associated with incontinence, but I have to say that I do have trouble with this. My bladder is normally completely trustworthy, but when I go into flare mode all bets are off. During a flare I resort to emptying my bladder every ten minutes so there isn't much there and wear pads just in case. When not flaring I can go for hours with no chance of leakage, so I can't help but feel this incontinence is part of my IC symptoms.

The diet is hard at first! The thought of giving up some of my favorite food & drinks was heartbreaking to me. -I actually had to fight back tears in the grocery store! Five years later I find I could now care less whether I can have a soda or not. I do know that certain items cause me a bunch of pain and that thought of pain way overshadows any love I once had for them!

I hope all goes well at your appointment tomorrow!

Vicki

[L. Thomas]

My IC is incredibly effected by allergies. There is valid research showing a correlation between IC and histamine response (allergies).

[BT2008]

Hey Ellen; Welcome! You will definitely find a lot of information and support here at the IC Network!

On the leakage of your urine: Vicki is right that it is not typically associated with IC, however, I do not think that this is necessarily the case, especially in the early stages.

I was not hit with the severe pain of IC until June of 2008, and not diagnosed until September, but--the more I learn about IC, the more I am convinced that I have had IC since 2002.

After having my remaining ovary removed (thus completing a full hysterectomy) I immediately started having the "dribbles"...when I walked, when I laughed, when I coughed/sneezed etc. I had to wear a pad 24/7. Then as time went on, I began to suffer from frequency to the point that I was going to pee every 30 minutes to an hour. After this went on for several years, I still went every 30 minutes or so and began to regularly experience hesitancy (where you feel like you really need to go--but can't), and this was followed by a flow of very aggravating "start, stop, start, dribble, dribble, start, stop," etc. This was when I started turning the water on to help me pee! And somewhere in there, I stopped having the leakage problem! Why? I don't have a clue! But, it was not long after the hesitancy problem started that I was eventually hit with the horrible bladder pain that severe IC can cause.

So, while I never had a UTI during all that time (hence no urethral pain at all) and never consulted a doctor for my urinary symptoms, I can now look back and see the progressiveness of this disease. So, it may well be that you are in the very early stages of IC, and this is VERY good news! There is a very good chance that you can stop it from getting worse--at least for a long time to come--if you can get the right treatment ASAP. And do pursue the allergy possibility. That may be your answer right there!

Keep searching for a urologist who will help you, in spite of the fact that you don't have any insurance. Also, as far as going to your GP, take him some literature on IC that you find here on the network or on the web in general. Also ask him for suggestions of a urologist who will help you, and maybe he will even give him/her a call on your behalf. Since you have such a good relationship with him, try to insure that he and whatever urologist you see will work together to help you manage all of your symptoms.

As far as the diet is concerned--and yes, even chocolate!--if and when the pain gets bad enough, you WILL stop eating or drinking that item!! Like Sharon said about oranges, you will not be tempted in the least to eat/drink something that causes you pain. Just the thought of some of the no-no's gives me the weebie-jeebies and looking at pictures of some them almost makes me hurt!!:lmao:

On CHOCOLATE (which is not so much a "food" as it is a "necessity of life"!!:)): Until you get your pain and symptoms under control it would be best to stay away from it. However, there is white chocolate, carob, and other creamy sweets that you can enjoy just as much (ok, maybe not as much, but they are better than nothing!!). Also, once you get your pain and symptoms under control, you can try to eat a little bit of chocolate and see what happens. If it doesn't make your pain worse, try a little bit more. But, just be careful and don't "trick yourself" into thinking that eating it will always be okay! Sometimes it may be okay, and sometimes it may not!! I can actually eat chocolate now, but not much! And I can honestly say that a little bit goes a long way when forced to live without it altogether! Plus, I have also found that dark chocolate is safer for me than milk chocolate.

Experiment with all the foods on the IC Diet the same way. Try one and wait a few days and see what happens, and then try another one.

Living with IC involves also living a life of trial and error! But just keep trying and make a point of learning from your errors!

Take care, and welcome to The Best Support and Information Forum in Cyberspace!!

~Beth

[ICsmiles]

Hi, I too would like to say welcome, and I hope that coming here to the ICN helps you as much as it has helped me. I always find some kind of information or sharing that pertains to my situation, plus the comfort of knowing I am not alone in this.
I am going to try botox but I have already tried most of the first-line treatments for IC, which I have had for many years. In the last two years pelvic floor dysfunction and pudendal neuralgia were added to the mix. Anyway, I am very hopeful about botox. I will come back here and post as I go through it and let others know. We are all researchers and advocates for our own health - some very courageous people here. Best wishes, and let us know how you are doing.
Sharon

[c2miracle]

:smile tee Hello "ellenmarie", welcome to our IC family. This site has helped me tremendously! Advice is abundant and the support is always here. Hang in there and drink alot of water! Think Positive! :smile tee

[ellenmarie]

Hello Everyone! Thanks so much for all the replies! I get the replies in my email on my phone and have definitely appreciated all the support :) This past weekend was my birthday (big 25 :woohoo:!) so I have been avoiding even thinking about IC.. sorry everyone ;D

But I did go to the doctor last Friday and am now currently taking Detrol again - just because he gave me samples, and I figured it can't hurt to give it another chance. I have 4 weeks of samples, so hopefully I can start to feel a difference in something. My doctor also gave me atarax, the antihistamine, to take at night. This has helped me be able to sleep, which is a freaking blessing!!

I asked about elmiron and elavil. My doctor has never prescribed elmiron and is not familiar. He looked it up really quickly for me and told me that since I don't have insurance it probably wouldn't be a good option for me because it is so expensive. In his handy book, it showed up with four dollar symbols like this $$$$. so I don't know how much that means the price range is. Does anyone know just how expensive it is?
My doctor definitely wants me to try elavil eventually, but wants to wait to see exactly how the atarax and detrol effect me, if at all. It will be a slow process, but I understand his outlook. I suppose going at it slowly and seeing just how each particular medication effects me is better than taking a bunch and having no idea which works and what doesn't.

Since my flare this year, I have been very outspoken about it with my friends and family, and have found a surprising amount of people that also deal with IC. I already knew my grandma dealt with it, but also my best friend's grandma, and my mom's best friend. So it's been interesting to hear their details. Apparently my best friend's grandma JUST found a medication that immediately helped her symptoms. My friend is supposed to give me the details of that medication (apparently it's new, 2009?). All she knew was that it was very expensive and was a very new medication. I'm definitely interested and will share the information with all of you as I find out details.
My mom's friend who has IC also has the vulvadynia (sp?) which I do not currently suffer from. BUT, she told me she takes 3 citracal a day and that has helped her a lot. Though, every person I talked to told me that the diet significantly helped them. Of course I was bummed to hear this ;D I am so not excited to have the most boring meal courses EVER! But, hey, it is worth not being in pain. I can agree with that.

I am also adamantly trying to figure out my finances and see what I can do to afford health insurance. I don't know when I can get that all sorted out, but I really really really want some NOW!

So that is my update for now! I love love looooove this community! All of you have given me so much hope. The happy posts, the depressing posts, all of them! It's just great to see all of us dealing in our own way. I love it.

[ellenmarie]

hello everyone :)
i talked to my best friend's grandma today and yes, the "miracle" medication that helped her was indeed elmiron. She says it is the only medication she has tried that actually helped her. AND i asked her how much she found it for - and she said she is an adamant searcher, and found it for $350 at Target in case anyone was wondering. Though I did a search for the cost and saw a 2006 article saying it ranged from $100 - $250 so... yep, still not sure! :bonk:

[VickiB]

I quit taking Elmiron in '06. in large part due to the price. It helped my bladder but hurt my wallet more! (My insurance didn't cover it) At that time it was around $340.00 for a month's supply at my pharmacy.

I've read the patent runs out in 2010, so maybe someone will market a generic version.

Vicki

[Goldfinch]

There is a thread in the Elmiron topic devoted to price. With no insurance it can indeed run to over $350 per month. That's for 90 pills, or 3/x day as per the manufacturer's standard starting dose.