Really sorry, need some support

[George]

I'm in a flare. I think it was caused at the dentist. I've been having 3 dental treatments each week for the last 3 weeks. I think I've been progressively getting worse. Last appointment was on Tuesday. My bladder is sore and my urethra is screaming. I had a lot of local anasthetic and gas on all 3 appointments. I'm under an enormous amount of stress but I really think that my pain is related to the dental treatments. My friend bought me some uristat and that I think has made things worse as well. I've got stains everywhere on my underwear and I'm just so upset. If things just can't get worse. I cannot tolerate Elmiron. After 5 weeks on it things just went from bad to worse. Tolerated it initially, then the nausea set in after a week. Tried to ride out the nausea and then terrible headaches started. What a mess. I'm so tired of all of this. I thought it was bad enough just peeing all day, but this pain and irritation is really depressing. I just seem to go from periods of just annoying IC symptoms to downright debilitating symptoms. I've not had any peace from this for 2 years since this IC all started. My urethra now is just so sore. My bladder is just downright angry at the moment. I'm just at a loss as to what to do. I'm sure this dental treatment has made things worse. Just really need to scream at the moment. I can't find any relief. Sorry to be such a pain. I'm always asking for help.

[ihurttoo]

Dear George,

I am sorry that you are suffering. Please dont ever think that you can ask for help too often!! This is your support group, and that is what it is here for!

I am sure the dental work has set your bladder off this time. It always does me too. I dont know if it is the chemicals in the stuff they use to numb, or just the work itself that sets off a chain reaction, but whatever it is, it always gets my bladder too!

I just had dental work done last week and had the same thing happen, so I definately feel for you!!

Are you able to tolerate anything in an anti-inflammatory? (Most ICers can not.) Fortunately, I am one of the lucky ones, that I can take them and it seems to help me with pain from this source. I guess because when the inflammation in your mouth gets in your bloodstream it can travel to your bladder, and wreak havoc there too. I suppose it goes there since it is already so vulnerable due to us having IC. Who knows though!

Did you ask your Dentist for something for pain? If he/she gave you something and it just isnt effective, then by all means, please ask for something stronger, and of course if you HAVENT asked for anything, then by all means ASK!! No sense in trying to tough it out! No one gives prizes for enduring pain without pain meds!

Something else too, if your Uro wont help you with pain issues, it might be time to find another Uro, or a new Primary Care Dr that can help you with this, so that you will have meds on hand for occasional flares. If however, you have every day pain, (and this is just a bad increase of your daily pain), then adding a Pain Mgmt Dr. to your medical team is certainly in order.

Has your Dr. ever let you try B and O Suppositories? (That stands for Belladonna and Opium.) Alot of ICers swear by those and some Uros dont seem to have as much of a problem prescribing them as they do other pain meds...(at least around here.) You might call your Dr and see if he/she will let you try them. You never know! What is the worst they could do, say no? If so, you are no worse off than you are right now, and they might just do it!

While you are at it, ask for something for the Nausea from your Dentist. If the DMD says no, then ask your Primary Care Dr. If that one says no, ask your Uro. If you cant get past the "gatekeepers", call after they close and ask the Dr on call to call in something for you. Use every resource you have to get the help you need!

One other thing too, I know you know this already, but just wanted to remind you that you never know when what you think is a flare is actually a UTI. The symptoms can be SOOOO similar sometimes! So, please call your Dr and see if you can drop off a urine sample at their lab, just to be sure. It is always best to be on the safe side!!

Also, have you tried drinking the baking soda/water drink? Sometimes it helps. Also, try getting in the tub, with water as warm as you can stand, to help relax those muscles that are tensed from the pain. This usually helps some, since those tensed up muscles contribute to the pain.

When you get out of the tub, try heat and ice. See if either help at all, or try alternating them every few minutes. Sometimes this confuses the nerves enough to stop it from transmitting the pain signals. Worth a try!

I wish I could help you! I feel so bad for you! But remember, since you arent normally in this much pain, and this IS a flare for you, then you know it will pass at some point! So, hang in there and tell yourself the same thing you do when you have the flu, "Each day I suffer, is one day closer to when this passes!"

I hope you get to feeling better soon! Again, please dont ever think you post too often needing help!! That is what we are here for! We want to help, just like you want to help us when it is our turn! So let us! Helping you when you hurt, is what helps us take our minds off our own pain when we hurt! Sending you big hugs, Amy

[ihurttoo]

OH! I just remembered something!!! Since you mentioned nausea, you DEFINATELY need to get to the DR and have your blood checked!! Nausea following dental work can be caused by Sepsis! I actually was hospitalized 2 years ago with a Double kidney infection a week after dental work. The infection from the tooth got into my blood and caused it and also Sepsis. Sepsis can make you sick as a dog, but it can also be deadly! So, please!! PLEASE go see your Dr. in the morning if you are still nauseated!!!

Hugs,
Amy

[yvette]

Awwwww (((((((((((george))))))))))))))))))
don't ever feel bad for asking for help :) That's what we're here for.
Sounds like you've got an awful lot on your plate and I'm sure between stress and major dental work (extreme trauma to your head!) no wonder your IC is awful.

We need to help you put together an "IC-toolkit". A toolkit is what each of us put together and keep on hand to help us get through nasty flares and such. Does heating pads and/or ice paks help? What about pain meds? What works for you? How about Benedryl or an antihistimine? And of course water, a good selection of books, music, and movies can help too!

I hope maybe other people might offer what helps them get thru nasty flares...
Hope you feel better soon!
y. :bunny:

[ICNDonna]

I hope you're finished with the dental work now. It could very easily be the deadening agent that is causing your flare. If you still have more work to be done, you might talk with your dentist about spacing the appointments less frequently so the effects don't pile up on you.

I hope your tomorrow is better.

Warm hugs,
Donna

[ChrissySunshine]

Amy & Yvette have offered some great advice. I'm afraid I can't add much to it, just want to send some hugs and prayers your way. I hope you get some relief soon. :pray: :grouphug:

[traceann]

I too think you have gotten some great advice already and just want to add to never feel like you are being a bother!! That's what we are all here for!!!!!! Sending you big hugs!!!!!!

[windwalker]

Yup, they gave real good ideas, if you can't handle baking soda in water, some tums may give a little relief. I usually do the baking soda in water, grab the heating pad and if its real awful, I take a muscle relaxer (usually only a quarter of one does the trick). Wanted to give ya some support and hoping this flare ends real soon!

[George]

Thanks everyone for your help. I think the IC toolkit is a good idea. I've not thought about that before. I'm going to try and put together something. I'll buy some baking soda and a heating pad today. I've got to go away for this weekend so I'm hoping things settle down a bit. Thanks again to everyone.

[ICLori]

Hi, George, I'm so sorry you are flaring. :( I'm sorry too that the Elmiron didn't work out for you. Some people who couldn't tolerate Elmiron, have tried the Algonot stuff sold here instead, and people say it works the same way as Elmiron, so maybe it's worth a try?

The anesthetic dentists use always makes my bladder flare badly, too. The worst part is, it usually flares up while I'm still in the chair! So I am there just dying from my bladder, while my mouth is being fixed! I remember this one time, I kept running to the bathroom while my dentist was working on other patients (he had a bunch of us he was going back and forth between.) So he gets back to the chair and I'm dashing from the bathroom to the chair and I hear him say, "My patient is gone!!!" Eek. I tried to tell him afterwards about my bladder problem. All he could think of was, "are you going to wet my bladder chair?"

Everyone else gave REALLY great suggestions and I can't think of anything to add...oh, one thing - I find that a hot water bottle works better for me than a heating pad, because you can get it hotter. But it's a matter of personal preference.

Hope you feel better soon. I know this is really hard - just please don't give up hope, something will work to make you get better.

Blessings,
Lori

[Babs RN]

George,
Sorry to hear life is throwing yow some curb balls. Please let me know if I can help.

Hugs,
Barb:smile tee

[SandyRN]

So sorry things are rough right now....and don't EVER feel bad about asking for help. We ALL do it, and thats what we're here for. You've gotten some great answers and I hope you feel better soon!

Sandy

[Kara29]

George,

I hear your frustration. From all of the replies you received from these wonderful people, you can see that you are not alone in this! AMY Wonderful post! :)

I hope you find some peace and light soon!

Kara:angel:

[traceann]

Yup - tool kit can be a real lifesaver!

My tool kit: my heating pad w/auto shut-off, Tums, baking soda, Prelief, AZO Standard/Uristat/Pyridium, cold packs, frozen water bottles, pain reliever, ThermaCare Heat patches, favorite friendly herbal tea and my favorite comfort movie/book (which happens to be the 2nd Harry Potter movie and any of the Harry Potter books, lol)...

[CohenandI]

Hi George, Andrea here.... I don't tend to get on here much latley but just wanted to say HI & I hope you are feeling better soon.
You have had such a horrid time with your IC it's not funny & I am so sorry that the elmiron didn't work for you it's has really helped me thank god not 100% but it has helped & we all know that any help or relief from this bladder agony is better than none. Do you have pain meds? If not you really need to make an app. with your DR. or mabey a pain clinic & get some help you shouldn't have to live in pain like that. My meds combo is pretty good now most of the time ( even though this week I have hardley made it out of bed, except for the loo stops every 10 mins:mad: ) but I know if I didn't have my pain meds on hand I would be at the ER so I am so glad for that. If you are too bad mabey you nedd a trip to the ER, just make sure you take some IC info with you so they know what you are talking about:confused: just to save some time.
Hope things improve
Andrea

[George]

Thanks everyone for your ideas and support. I'm really not feeling great, but I am just hoping that this will pass and I'll get back to "normal". I have to go away for the weekend for a family committment and I'm just dreading the drive in the morning. I've bought a hot/cold pack that I have heated up in the microwave. It was okay but it is just too small. The shop didn't have any bigger ones. Better than nothing I suppose. I took Uristat yesterday which my friend bought for me, but I don't think it agreed with me and there is just orange stains where ever I look. Also the baking soda makes me feel like I want to vomit, is that normal? The taste is not real good.

All in all this just has to pass. My periods of when I'm well just consist of peeing all the time and irritation. But this flare is depressing me. I think if by next week it hasn't improved I'm going to see the GP about pain relief and get checked for a UTI. I'm taking just an anti inflammatory but it's not really doing much. Anyway thanks gang for your help and support.

[traceann]

Hey George, lol I have always thought that the baking soda and water tasted how I imagine aquarium water would taste, lol. BLECK! But, it does help even if it does gag me, ;)

Hmmm, what kind of anti-inflammatory are you taking? Motrin, Advil etc (any ibuprofen product) can aggrivate our bladders, as it's rather acidic. I was lucky and it actually helped my pain, but did nothing great for my stomach so I am no longer using it. But, if you are using that type of product - you might want to switch and see if that dials down the discomfort some!!!

HUGS!!!!!!!!

[Tracey5399]

Hi George,

I can't add any more great info than you already got. Aren't the boards awesome!
I am so sorry that the elmiron didn't work for you, i really was hoping it would.

I would definitly look into the cystoprotek and also for your road trip you can also if you want try the depends. That way you are fully covered and if ya gotta leak a bit they are great for absorbing and feeling a little more comfortable.

I really hope your flare calms down and you find a pain med that will work for you. Even if you don't need them all the time at least if you ever have to go through this again ( i pray you don't ) but a pain med may help you be more funtional.

Wishing you a safe, feeling well trip,
Tracey :)

[poetgirl]

I hope you feel better soon! I didn't do so well with Uristat either (and we all hate that orange dye!) Hopefully your doctor might be able to prescribe some form of med that can help with your bladder/urethra pain.

:grouphug:

[GGOMEZ]

Hello everyone,

I had been doing real good for a couple of months but I noticed my frequency start to increase about two weeks ago. I called my dr. and she started me up on 2 IC treatments per week. After a week my frequency started to go down but then yesterday I got up and just wasn't feeling right. I felt extremely fatigued. My wife said that I should take a day off from my swimming and relax at home. Well by yesterday evening my frequency really picked up and I started having good pain on urination. I was up 6 times during the night and didn't get much rest. This morning my blood pressure started to go up as well along with a low grade fever. I called my dr. at 8 am and they told me to come in right away. When my urine was checked they found I had an infection. She ordered an antibiotic injection right away and then also gave me a prescription for cipro 2 times a day for three weeks. She told me that with men the infections are hard to kill because it goes into the prostate and very little of the antibiotic gets to the infection. This is my second infection in the last 5 months. Boy does it hurt to urinate. I've got an ice pack on my head and I'm drinking a bottle of water every hour along with Tylenol every 4 hours. I know I'm in for a rough night. I'm with all of you that are hurting. I will pray for you. Please pray for me as well. The last time I ended up in ICU for 3 days. I hope that doesn't happen this time. I will keep you informed.

GGomez

:smile tee

[Katrina]

:grouphug: All bad flares could use some muscle relaxing help too...heat, cold, moisture, relaxation. Hope you feel better soon :grouphug:

[windwalker]

Prayin for ya, do what ya can to rest. May not be easy but hopefully the antibiotics will kick in quicker and help out.

[George]

Thanks to everyone for your support and suggestions. I'm doing a little bit better today. Warm baths and a hot pack has helped. I'm going to start Cystoprotek soon and I'm going to try Prelief as well. Everyone here is just great. Thanks for listening.

[GGOMEZ]

Hi Windwalker,

Thanks for your support. My fever hasn't gone away yet. It seems that as soon as the effects of the Tylenol ware off, the fever begins to climb. It's painful on urination but not as much as yesterday. I'm still very tired. I was up about ten times last night and each time I was able to pee just a little. My dr said she would know what bacteria is in my urine tomorrow. I feel as bad as I felt back in June when I ended up in ICU in Port Huron, Michigan. But I'll wait and see what tomorrow brings. Thanks.

GG:

smile tee

[traceann]

Oh GGomez! I do hope you start feeling better soon! That has got be miserable, ugh. I just went through the fever bit with a bout of bronchitis I am hopefully finally getting the better of, so I know how miserable they can make you feel!!!

Do keep us posted on what your doc finds out and hopefully you will be on the road to feeling better soon!!!!!

:)

[shcasmom3]

Ask your doctor if you can take the elmiron without the coating. Thats how my daughter takes it. You just need the medicine on the inside of the capsule. The outside has a tendency to hurt peoples stomaches. Also, stress releases "mast cells" which attack the bladder and make it worse. Allergies do the same thing. My daughter (who is five) is on hydroxyzine for a mast cell stabilizer. Ask about those things maybe they'll help. She has IC for about 2 years as well. Her specialist is the best doctor, Dr. Lowell Parsons. Look him up on this site. There are several articles. They may help you. Good luck.

[Kimchi]

Hey George. I have not been on the board in a while and just saw your post. I sure hope you are feeling better. I was wondering if you have ever given any thought to rescue instillations? They are life savers of me. Might want to talk to your Dr about it.

[windwalker]

I hope you are feeling better today and you know what bacteria was the culprit. Remember sometimes the anti's can cause some pain but ya know, its worth it because it could get worse w/out the treatment, plus you can feel so much better when its all done.
If you are getting stomach upset, you can take the elmiron, empty it in a glass (8 ounces) of water and drink it, I did that recently for a week and I was fine. A little gritty but no awful taste. Keep resting and hope you are getting better. Oh, I know where Port Huron is, I am about 45 minutes from there. :)

[purpleviolet]

I hope George is better from dental work. I'm wondering if dental work can cause more bacteria to head downstream. I know some people have to take antibiotics because they have certain heart conditions that may react to the release of bacteria into the bloodstream from dental work. I just wonder if a load would hurt the bladder without a real infection starting. Ofcourse those drugs for the mouth probably are irritating. Are they acid?