im glad to know im not alone

[TheMoonandBach]

I suspect I have had IC for almost 3 years now, with pain and constant urination ever present. Just over a year ago, I had a systoscpy done, but the urilogist I went to was a quack and did not believe in IC, so I got the, take this medicine and you'll be fine runaround. Finally two weeks ago today, I was at work and the pain was so intense, I almost passed out and could not continue working. I immediately left work and went to the ER in tears from driving myself there. My soon to be husband met me there. They said... its a bladder infection. Take this and if the pain gets worse, come back in. A shot of morphine, 3 vicodin, and 10 hours later, I was back in the ER. Once again, it was, we dont know, but here is some more pain medication. The following night I was back in the ER, but the mystery remained. They put me on detrol, and the symptoms subsided for about 4 days. Then on Christmas, the pain came back full force. Once again, the day after christmas, I was back in the ER. And once again, news about what was wrong with me was non-existent. Finally the ER doctor said: here is the number of a urilogist, I'm setting up an emergency appt. for you. So I went in on this past Wednesday and the doctor uttered two words I had never even heard of before. IC. Finally, after 3 years of pain and thinking it was all in my head, there was a name to what was wrong with me.

Now here is my question to other IC patients. When I have had my last 3 flare-ups, it feels as though my urethra itself is swollen and it is very difficult to actually urinate. I still go 14 times a day, i just spend 15 minutes forcing myself to go, which is also very painful. Now, I have done a lot of research over the past few days, and have not seen that as a common symptom. What is going on with my body?!?!?! What is wrong with me? Where do I go from here? I am hypoglycemic, so I dont know how to handle this diet... I am just confused and at the end of my ropes and very frusterated with myself...

PLEASE HELP!!!

[ICNJess]

Wow you poor thing!! I wish I could help, but I would say to ask your urologist about your diet since you are hypoglycemic, or perhaps try a nutritionist. It sounds like your urinary tract is extremely sensitive in flare-ups, which is actually pretty common with ICers. When I'm at my worst, my whole tract (from urethra all the way to kidney!) is hurting and I am in pain. I hope you get some answers soon.

Hugs,
Jess

[traceann]

Hello and :welcome: to the gang!! I am so glad you found us as this place is wonderful for getting support, information etc.

I will tell you and I think most will agree, the time around diagnosis is the WORST! Once you start on the medications, and have some knowledge behind you on what foods/drinks can aggrivate your bladder things do get better. I have been on my meds for a year now, and I rarely feel my bladder anymore, and have expanded my diet GREATLY. The beginning of the diet is restrictive, but that is just to elimate any known bladder aggrivators and give your bladder a chance to "calm down". Once you have reached that point (for me it took 3-4 weeks give or take), you start introducing foods one at a time back into your diet. If my symptoms increased, it went on my no-no list to be retried at a later date, if it failed the second time it went on my permanent no-no list. Happy to report, there is hardly nothing on my no-no list now a days! ;) So, it will probably surprise you at what you can eat, it will most likely be more than you expected. Since you have other food-affected health concerns, working with with a nutritionist/dietician would probably be a great idea to help you navigate all of this. Or even talk to your doc who helps you manage that, take in a copy of the IC Diet foods list and see what they think as well. Here's a link right to it:

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

You have already found it I'm sure, but thought I would post it for you anyway, I know for me in the beginning I could never find it twice, :biglaugh:

And here's a link to the Patient Handbook:

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

When my symptoms started, it was mostly urethral for me. That was where my pain and discomfort mainly was. So, my doc put me on Ditropan (same kind of med as Detrol), and it helped some. When I went back in and reported it was just working ok and that my frequency was still up, we discussed IC (er, I should say I brought up IC after months of research) and that was about it. A couple weeks later when a "UTI" started the bladder in the act, I was given Elmiron and we started treating it as IC. Thank goodness. For me, and I think most ICers, it's our med combo that seems to be the ticket to managing symptoms. One of them alone wasn't enough for me, it's all them working together that really makes the difference.

Have you been started on any medications or treatments for the IC, along with the Detrol?? Here's a list of some self-helps I learned in my first month here from these wonderful people. These have served me well, in dealing with the day-to-day and some not so day-to-day symptoms.


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!!!!

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.

Hope this helps a little bit, ask all the questions you need to we are all here to help as much as we can!!!

Hugs,
Tracey

[Katrina]

:welcome: to the ICN! Glad you found us! Sorry you have IC but glad you have a name to your suffering. I would alternate cold and heat for that swelling :grouphug: Try to avoid forcing yourself to go. (PFD is way no fun and mine is bad...pushing makes things worse) Try messaging your urethra...and relax!! IC often comes with a few other things...some of the big ones Pelvic Floor Dyfunction (PFD) and Irital Bowel Syndrome (IBS). Retention can come from PFD which can be effected by trying to "hold it" a lot. Let me know if I can help you anymore. :grouphug:

http://www.icnshop.com/ there are IC friendly things such as alternatives, soaps, foods, books, and many other things. It is a good place to take a look at. It has a book for sale called "Confident Choices" which is very helpful in figuring out the diet.

http://www.ic-network.com/icchef/ online cookbook IC

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[TheMoonandBach]

Thanks guys!! I'm really glad to know I have other people to talk to about what is going on with me. Im having a really bad flare up today, but got a heating pad to put on it. Thanks for the advice. I had another question though. I was fired from my job because of this... what can I do? Thanks again. Any and all help and words of wisdom is very much appreciated. thanks--Heather

[asilva]

Thanks to all for the tips. As another newbie, I appreciate them so much. Tracey, you gave me a lot of good information. This may sound dumb, but do you just lay the heating pad across your abdomen and private area? I always used it for the back pain, but not in the front. THe ice pack sounds interesting. Think I will try it. I'm having a really bad flare right now, too. Sounds like there are a lot of us out there (post holiday foods, stress, perhaps?) I called my uro's office and talked to the nurse. Told her I had been researching IC and she said they were very familiar with it, so when I go see him tomorrow, we will plan our next step. Also made an appointment for accupuncture, as many have been helped by that. Hope we all get better soon!

[hoping4acure]

:welcome: TheMoonandBach and asilva.

This is a great place to be if you have IC! You have already gotten some great advice from Tracey...she is awesome ;)

I, also found that the heating pad was my best friend. I just laid it right on my bladder. It helped me a great deal. The other thing that I found soothing was chamomile tea or just plain hot water and honey. The IC diet is so important, please make sure you check that out.

At first you really think your world is crashing in around you. I felt that way just last year, and look at me now...I am in remission! There is hope...hang in there and keep the faith. Also, don't be afraid to research alternative medicines.

Good luck and please keep us posted.

:grouphug:


Louann

[Sarojini]

:welcome:

You have already been given some good advice.

As for difficulty urinating, it might be urinary retention -- this sometimes happens when the bladder and urethra are inflamed from your IC, and things literally do swell so it's harder to urinate. Pushing is a bad idea, as Katrina said, as it makes it all worse. Heat helps sometimes; it relaxes the muscles in the area, allowing your urethra and bladder neck to open wider so you can urinate and empty your bladder more fully. I'd discuss the symptom with your urologist though; it could be that some meds you're on are making the problem worse (for example, Detrol and Ditropan can make the symptom worse in some people).

:grouphug:

[dbdab]

Hi. I've come in here kind of late, but just wanted to add that I went through not being able to go back in April. It hurt so bad that I felt like I just had to push it out and that as everyone has said made it worse. What I think helped me with that was biofeedback, though I'm not positive that was exactly it, but after about 5 biofeedback sessions I didn't have that problem anymore. I know what you're going through, so I feel for you. I think also I was experiencing that when my IC was at it's absolute worst and I think once things calm down that will go away too.

Hope you feel better. Try not to push even though I know it's hard.

Deb

[SusieQ045]

i am so sorry that you are having such a rough time. but im glad that you found us. coming here and talking seems to make everyone feel a little better. good luck and i hope you feel better soon!

[traceann]

Asilva, you are so welcome, and yep like Louann (btw thanks for the compliment Louann ;) ) said, I too just lay it across my abdomen, and sometimes I would turn it diagonally and have the corner point sloping down over the vulvar area -- that way I had it all covered, lol, I guess pun inteneded!! ;)

I would think TheMoonandBach, that you might be able to contact some legal help and see if you have any recourse in the matter. I can't imagine a consultation could be too costly, but then again - I could be wrong. Hopefully someone with an idea will chime in!! :)

Hugs!

[Bianchi]

I dont think it's legal to fire you because of IC. Is there a legal dept. at where you live that you could consult for a minimum fee? Maybe Social Services?
It just isnt right!
Bianchi