newly diagnosed, long time symptoms

[Jessi3377]

Hello!
I am a brand new member and newly diagnosed with IC (one month ago). I am 24yrs old and have had symptoms for 19 years now. I have been to at least 8 different doctors who were unable to diagnose me with anything. I have finally found a GREAT doctor who has diagnosed me with IC. I was so releived and happy that I had finally got a diagnosis! The doctor gave me a booklet explaining everything about IC and I realized that I'm not alone with this. Everything makes since to me now, I have learned what can make me have flare-ups and so much more. The greatest thing is just knowing that someone understands and that there are others out there just like me. :).
I still have a lot of questions and am very scared about some things. I have had symptoms since I was about 5 years old. I would say I have a mild case of IC. When I was younger I would only have "bad spells" 2 or 3 times a year. I got married 6 months ago and now have symptoms every day! It seems to be getting worse the older I get. I have some mild urinary frequency but that's usually not an issue with my IC. I mainly just have constant pain and discomfort. I was wondering if there are others that have all the symptoms but do not have urinary frequency?
I have had 2 cystoscopys and the doctors found "little ulcers" in my bladder. My new doctor wants to do a cystoscope and hydro on me in January. I was wondering if anyone can tell me if the hydro is painful? I have heard that it can be because of the hard baldder but I'm not sure if my bladder is hardened if I don't have much urinary frequency. I'm not sure, I'm still a little confused and learning about IC.
Any sugestions on how to make sex less painful? I have been having pain for almost 3 weeks now from having sex with my husband one time. I have a wonderful husband who understands everything but I think he's getting to be afraid to touch me in worry of hurting me. :(
My doctor said he will perscribe me medication after he does the procedure in January. Are there any specifics to suggest a perscription for? I'm not familiar with any and would like to know what you guys have found to be helpful. I would really like to stay away from any ani-deperssants if possible.

I am also very scared and have a lot of questions about pregnancy and IC. Is in hereditary? Can it effect the baby? Will my symptoms worsen? I am not pregnant but am planning on having a baby in a couple of years. I know these are questions I need to ask my doctor but I will not see him again for another month and was wanting some answers now if possible.
Any advise would be helpful to me. I have found that soaking in hot, hot water helps me feel a little better. This is the only thing that I have found helpful. Any suggestions would be greatly appreciated!!! I will read more on the message boards for helpful tips and help in understanding everything.
Thanks to all!!!

[hoping4acure]

Hi and :welcome:

I can tell you I have at least 5 hydro's done. That was one of the things that put me into "remission" :)

Your doctor will perscribe what he thinks is best for you. My doctor always gave my a two pyridium and a pain killer (vicoden) after the procedure.

It will be difficult at first. Try to stick to the IC diet I have listed below and check out the IC patient handbook listed below also.

I am confident that you will find what is best for you. Hang there, keep the faith, and know that we are all here for you. This is an incredible support group...I just can't say it enough.


If you have any questions...ask away, don't be shy...we have heard everything. ;)


:grouphug:

Louann

[Sarojini]

Your story sounds like mine; I think I started with IC when I was about 8 or 9, but had very mild symptoms then -- and they got worse as I got older. I was finally diagnosed a few years ago when I was 29 and at that point I had a lot of pain, urgency and frequency.

Yes, it's possible not to have frequency with IC. Some of us have all of it -- frequency, urgency, and pain -- and others have one or two of the symptoms. IC is strange in that it is different for everyone.

The hydro shouldn't hurt too much; they should give you adequate pain control when they perform the procedure and after, for your recovery, as well. When I had mine, my urine was bloody for about 12 hours or so (maybe more; I was a bit out of it from anesthesia) and I was sore for a few days but recovered very quickly. Others report that it has taken them a week or two to feel normal, but it should go well and you should be fine! Also, about 50% of patients get relief from that procedure itself, so you might have that to look forward to as well! :)

I recommend you check out our patient handbook at http://www.ic-network.com/handbook -- it's full of information about diagnosis, treatment, and self help strategies, including the IC diet.

[Sarojini]

Oh, and about the sex issue -- check out our forum called "Romance and Sex." There are lots of ideas there that may help you have less pain during intercourse! :)

[traceann]

Hi Jessica and :welcome: to the boards!! It sounds like you are getting a good handle on the whole IC thing, lol. It's a lot to digest at first, so much information at once.

There are as many treatment combos as there are ICers I think! :biglaugh: My personal combo is Ditropan, Elmiron and Hydroxyzine (an antihistamine). I started just on Ditropan, but that wasn't cutting it by itself completely. Then we officially called it IC and I started on the Elmiron. After reading an article here on the site, I then asked my doc to add the Hydroxyzine to my regimen. The combo of the three have done the trick!! I feel almost my normal self, more than not!! Very rarely does my bladder kick up a big fuss, if it does, it's very mild and doesn't slow me down one bit. I have been on my meds since Nov of 2004, it's been rather slow going, but definitely worth it. The diet is a HUGE tool as well, don't know what I would have done without it. Here's a link right to the IC Diet foods list:

http://www.ic-network.com/handbook/diet.html


Here's a list of some self-helps I learned here in my first month or so of hanging out at the site:

Heating pad/Thermacare Heat Patches: I now have a heating pad with an auto shut-off so if I do fall asleep with it one, I am safe. The heat patches are wonderful for when your heating pad isn't feasible - like for travel or sleeping. Heat was my number one friend for my bladder!!!! And it's funny, I scoffed at heat being any help, it had never helped me for menstrual cramps, so I didn't see how it would work for me now. Funny enough, I was taking a shower as I was planning on having my hubby take me to the ER for the pain, I was miserable and had no pain medications at all...all of a sudden in the shower with the warm water hitting my bladder area, the pain subsided and backed off a bit! I was so excited an relieved!! All I had at the time were some of the Thermacare Heat Patches for neck/shoulder pain - I stuck one on and it was grea!!! LOL

Cold pack/frozen water bottle: For the vulvar pain and for my urethral spasms cold worked the best. Depending on what was going on all urethral or all clitoral/vulvar etc, I would use either one. The frozen water bottle is fantastic for putting between your legs, it fits perfectly. (I discovered this trick on a horrible car trip, that the water my hubby bought me, when I held it between my legs my urethra calmed right down!) I would even half sit on it -- straddling it. It helped sooo much!!

Prelief tablets: These are tablets you can buy in your drugstore or online that help to reduce the acid in foods. You take them right before you eat. They have helped me to expand my diet and tolerate some things I wouldn't normally be able to tolerate. I get them at my local Rite Aid, I spend anywhere between 8-10 dollars on them, and that's for a bottle of 120. It's just basically a calcium supplement, but it's wonderful.

Baking Soda/Tums: If I had eaten something that did not like me, I would drink 1/2 -1 tsp of baking soda in a big glass of water. Tastes yucky but helps neutralize things, even used to help with my urethral spasms. But be careful with it if you have salt-sensitive health issues... Also eating a couple of Tums can help as well. I usually use that trick for travel than the baking soda in water.

Uristat/AZO Standard: These two are over-the-counter Pyridium. Basically an analgesic for your bladder/urethra. It numbs things up quite nicely, and they had helped me immensely with urgency and frequency problems! But, they are for short-term use only, it's not a regular every day thing. I think the directions say not to use more than 2 days in a row. I talked to my doctor and got the go ahead to dose more than it stated, but you do have to talk to your doc if you want to use it more often. Apparently from what I have read and understand, is, it can build up in your kidneys and cause problems. And it also makes your urine orange, so make sure you have plenty of panty liners, because any little drip and you have stains!! LOL

Voiding/Pain Diary: This was a HUGE tool for me. I recorded everything in a little spiral-bound notebook. Every time I peed - approximately how much I went and rated any discomfort/pain on the pain scale I found on the site. I logged in what day I was in my cycle as hormones can affect your bladder -- I found I always have some troubles around ovulation and right before my period. So, it was nice to be able to flip through when I couldn't figure out why my bladder might be acting up and see that it was most likely the normal hormonal kind of thing going on. I noted when my husband and I had sex, etc. Everything -- I logged everything. It was a great tool to have to turn to, and a great gauge of my progress. I would have never realized I was voiding 30+ times a day, and 3 times at least at night. With my diary I could see the numbers start to fall.... And those I would have not recognized either, since it was usually a decrease of one or two times a day.... Now, I am at maybe up to 10 times a day, and mostly because I constantly am drinking something, usually water water and more water, lol.

And for the sex issue, Jen's right, check out the Romance and Sex board, there's tons of useful info there (especially her sticky!! ;) ). I learned that what I/we had to do in the beginning was stay away from traditional sex for a few months until things got under control. That's when good and open communication came into play! Sometimes I avoided all forms, if my bladder was especially cranky,and again communication was important as it let him know it wasn't anything personal! :biglaugh: We found ways to be intimate without intercourse. And on nights when I just couldn't enjoy any touching of me, I made those nights into "Just Him" nights, and just pleased him. It made me feel good - I was able to show him that he was still my number one, I loved him and desired him, but my body was just saying no to any sexual activity involving me, and it kept our closeness and intimacy alive. It was hard for him at first to just be passive and relax, and just "receive" but, he got over it eventually!! :biglaugh: I sure can remember though worrying about our sex life! It was very important to me, and the thought of it never being the same again was depressing. I have to say, that having to go through that - even though there were a few snags and some crabbiness - made us stronger, and better communicators!!! ;) I just looked at the refraining from our normal sex life as temporary...something I needed to do to give my bladder a chance to get calmed down!!

I hope this info helps a little bit!! Once again, welcome to the gang!

Hugs!!

[Jessi3377]

Thank you guys sooooo much!!! Just knowing there are people like me and people to talk to helps so much!
I have been hurting now everyday for almost 3 weeks now from having sex with my husband one time. Do people usually hurt that long after something like that? I'm am so frustrated! I have more discomfort than pain right now but I hate that nothing I do makes me feel better. I have a doctor's app. on Jan. 13th and I'm hoping to get some releif from medicines. I am newly diagnosed so, I'm not currently taking anything for my IC.
I have learned so much from this site already and thank you so much for all the advice, suggestions, listening....
Have a Merry Christmas to all!!!

[traceann]

Hey Jessica! I suppose not being on any meds would make the flare from one time drag on a bit - unfortunately ;). But could it also be something you are eating that is helping it "stay alive"?? The diet can be really helpful to you right now, since you are still waiting to get on some meds etc. Have you been checked for a UTI as well??? Just trying to cover all the bases here, LMAO!!!

Hugs,
:)

[SusieQ045]

hey and welcome
your story is alot like mine, i went to so many docor and emergency room and uregent cares that i cant even count. for my treatment my doctor prescibed me to elmiron,ditropan,imipramine,avinza(morphine), and percocet for break through pain.
good luck hun im glad you finally have a diagnosis it wil make getting treatment easier.

[Jessi3377]

Hello to all! Thanks for all the responses!
I am in so much pain right now and just need to let that out. I have been in severe pain 3 to 5 hours every day for a month and a half now. I have always had pain but not for a long going period like this. I went to my family doctor at the end of December to see if I had a UTI but I didn't have one. I have my doctors app. with my urologist tomorrow and am so excited to gets some quesions answered! I really think I have a UTI right now. I usually go to my family doctor to see if I have a UTI and then get some antibiotics for it but lately I've been going and he says I don't have a UTI. Does anyone know if there is an over-the-counter test that I can get to test myself for UTIs? It would save me the $30 co-pay each time I go and they tell me I don't have one.
I'm having my first hydro done on Wed. I know that the hydro is part of diagnosing IC but my doctor told me he diagnosed me with it in December by looking at my past medical records. Maybe I'm not officially diagnosed because he won't prescribe me any meds for it until after my hydro, I don't know. I have had the cystoscope done a couple of time before but never the hydro. I heard the hydro hurts? any encouraging words?
I started the IC diet! I have been on it for a week now but I'm still a little confused on what to eat and what not to eat. my doctor told me not to eat anything white in color... no bread, potatoes, rice, etc. I drink only water, I have fiber containing cereal for breakfast and lunch, I avoid spicy foods at dinner time. I have pears, carrots, and pretzels for snacks. I am also taking pre-leif with every meal. So far I can't see that this is helping at all. I am going to continue and hope I get some releif. I really don't see a connection between food and my IC. except for when I'm in pain and I drink a ton of water I always feel better. Maybe I'm not feeling the results because I have a UTI right now? don't know...
I love these message boards because I can talk and vent about my pain all I want. I try not to talk about it too much to people. I know they can't do anything about my pain and are probably sick of hearing about it. I don't want my life to be all about IC but I see how it is slowly taking over every bit it. I sit at work and I'm in pain at home so I sit any lay around there too. I'm usually pretty active, I like to go to the gym, jog, and do anything outdoors. All I've been doing lately is laying around, I feel so lazy! I was really upset when I had to miss church on Sunday because I was in pain :( My muscles are cramping from lack of movement.
I do have to say I'm lucky that I have the job that I have and a wonderful husband and family. I work nights and I get to sit, wear comfortable scrubs, drink water all night long, go the the bathroom as often as I like, and I can sit on an ice pack or a warm blanket if I need to (I sit behind a desk). I even have a refridgerator in my office to keep my water bottles and ice pack. I havn't ever had to miss work because of my IC but it is hard sometimes to get myself here when I'm in pain.
I'm feeling sorry for my husband. We've only been married 6 months and sex doesn't happen very often. He's been cleaning and taking care of me, he's so sweet! I still cook and clean when I'm feeling alright. I hope he doesn't think I'm lazy becasue I really have been lately!
Well, I need to get back to work,
Hope everyone has a great weekend!!!

[traceann]

Hey there Jessica, um this is just my experience, but if it weren't for bread, potatoes, rice, pasta -- etc in the beginning I would have starved! ;) I have no problem with "white" items as a whole group, some foods that are "white" I am sure bother some peoples bladders - milk for example. But here's the link to the IC Diet foods list, it's very very helpful, I took it with me wherever I went - out to eat, shopping etc.

http://www.ic-network.com/handbook/diet.html

As Jill's said before, it's about eating fresh stuff really, avoid preservatives, etc. Stick to low to no acid foods, and so forth. I made tons of yummy things for myself out of pasta and frozen veggies when fresh weren't available (I was diagnosed in November of 2004), lots of pasta tosses, with herbs and olive oils as my seasonings, grilled chicken breast with herbs (one of my faves is dried sage, preservative-free garlic powder and salt) or a chicken breast (boneless & skinless) pan fried with the sage/garlic seasonings (sometimes thyme as well) in a little bit of butter. I also enjoyed grilled steaks. We went out and bought a cast iron grill pan, and it's fabulous for indoor grilling, hubby likes the taste better than on the actual outdoor grill! LOL Don't be too afraid of food!! You gotta eat, lol. I discovered I loved sweet potatoes - had never tried them before, just didn't think it was something I would like - now I love them and white potatoes, cubed up, tossed with olive oil, and herbs (thyme, garlice powder, salt etc) and roasted in the oven, yum, I can't get enough! And the veggies, I ate all kinds : broccoli, cauliflower, carrots, corn, peas, green beans... I'd make my own mixed veggies out of frozen and then toss with pasta, fresh garlic, salt and olive oil. Used rice the same way. Breads I chose based on ingredients... I have to stay away from soy flour - does not like me at all, lol. Basically I do the "diet" way of shopping - I shop the outer perimeter of the grocery store...all the fresh veggies, meats, dairy and frozen veg. If it weren't for Monterey Jack and mozzarella, I'd be a crazy person, lol. Well, I am crazy, but if I had to stay away from them under the white rule, I'd be really crabby! LMAO!!! OH and I can't forget my bagels and cream cheese! That was truly a lunch staple for me, lol.

So, don't be afraid of the foods, just make good choices, fresh stuff etc. And I am glad to hear you too drink lots of water, I know that keeps me and my bladder happy!!

I too am fortunate I have the job I do, I go in at 11 am, and home by 5. That later start time sure helped me out in the mornings, as those tended to be the worst for me, sitting and waiting for pain meds to kick in so I could start getting ready, ugh.

Yeah, I know how it feels to feel like you are not pulling your weight, it stinks. My hubby and I were married 7 months the 8th of this month, :woohoo: We were "engaged" when I was diagnosed, so he got to deal with it all as well, and helped me out a lot. It does get hard for the loved ones, they get frustrated as well, and can get grumpy, lol. Just try to keep the lines of communication open open open. Give him plenty of opportunity to vent his feelings, etc. It will help, keeps things from getting bottled up and then out of control, :biglaugh:

Well, anyway I just had to jump in when I saw your doc said no white foods.... I say I seriously disagree...again, that's just my opinion, but I think a lot the gang here would agree on the fact that it really doesn't make much sense, :hmm: :biglaugh: :hmm:

Hugs!!!
:)

[amber sevy]

:welcome: and :hi: I know I am a little late but wanted to say a little. about the sex thing I have been marrried for 2 years and it is still hard to get my husband into the "him only" nights talk a lot and help him understand how much you enjoy them also. that will help him relax. I am still trying to find my combo it will come for all of us someday. Keep your chin upand know we are all here for you.
learn all you can about IC I live in a small town where none of the Dr. had heard of ot but now they know a lot about it and do all they can to help me. Yes you can be happy again it takes time to find out what your triggers are but when you do you will find the pain will let up. I also think that once you have the hydro your doctor will be a lot more willing to help with pain meds. lust when i thought that I was taking the most Lortab I could a day my Dr. told me it was OK to take them 2 at a time when I felt i really needed to. be honest about everything and if he is a good Dr. he will help you.
just a little thing I do get a note book write down EVERYTHING that you put in your mouth. there is a pain scale on here note that number eachday and how many time you go to the bathroom. this can be helpful in many ways to figure out your triggers and it will help your doctor also.
I hope i have said a little to help you and if you ever want to talk PM me and I would love to help you any way I can :grouphug:

[Jessi3377]

Hello everyone!!! I went to the doctor, and again no infection. I have been following the IC diet for about 2 weeks now and it's really helping me! I can tell that caffeine, even the smallest bit of chocolate, and spicy foods cause me to hurt worse. I think my doctor wanted me to stay away from all white foods because of the low amounts of fiber they contain. He never mentioned any other foods to avoid, which I can't understand. He just said to eat plenty of fiber. I think I get plenty of fiber, I eat high fiber cereal in the mornings. I love pastas, and breads, rice... I want to do what my doctor says but I'm not listening to him on this one.
I am having my hydro and cysto in the morning. I will finally gets some meds!!!

[traceann]

I am so glad to hear the diet is calming things down for you!!! :) That is wonderful to hear, and once you get your meds - hope you feel even better! Do keep us posted please!!!! Good luck too!!! :)

HUGS!

[Jessi3377]

I had my hydro and cysto last week and I'm doing great!!! I feel so much better! I am on medication for my IC now- Elmiron and another medication that I can't remember the name of. I don't know which has helped me more: the IC diet, the hydro, or no sex but I feel so much better! I am also taking hydrocodine pills for pain. Whenever I start hurting I take only half of a pill and my pain goes away. This is the first time that I have ever had control over my pain. I think what made my IC so bad for me was the fact that I was hurting and nothing I did or took helped the pain. I know that I can't always take pain pills but it is so nice to finally have some relief!!!
Hope everyone has a great week!!!

[traceann]

That is wonderful to hear!! I am so happy to know that you are feeling great, that's fantastic news ;) Here's to keeping the trend going!

Hugs!