Do Some of You Feel Burning Frequently?

[futurehope]

Just curious.

Are there any of you out there that feel burning frequently but at such a low level of pain that you keep on doing/living/eating normally?

In other words, if you strictly followed the IC diet, the pain might go away, but you are not hurting enough and are unwilling to deprive yourself.

Anyone out there like that?

[msent]

I was diagnosed with IC in 1999; one of my main symptoms was burning and vaginal discomfort. I always thought I had a yeast infection and didn't. I don't know what helps, so far nothing for me. It seems to come and go. Lately it has been more constant. It is just always there and you function around the discomfort.
---------
Diagnosed with IC : 1999
Medications:
Elmirion 100 mg tid
Wellbutrin 150mg
Crestor 5mg
PRN: pyridium/ditropan XL/ultram

[scriv]

Yes, I burn all the time, sometimes worse than others, but not enough to stop me carrying on with life. I am, like you, also using vaginal oestrogen cream for urogenital dryness. i don't know whether this is all connected or what...:hi:

[Mimi7]

During a flare, I seem to experience burning that intensifies as the day goes on. I assumed it was from chemical urine irritation, but my urologist told me the burning was caused by nerve irritation in that area.

Still don't know who is right.

:angel: Mimi

fms, ic, ibs, migraine, etc.

[MerryBerryMoose]

Yup. I too have mild burning all the time (if it's a really good day). It has become my new normal.

[Maride]

I am burning almost all the time, except right after an instill. Today is so bad I can not wait to go pick up my instill and do it. Also the mild pelvic pain has increased a lot today. Just because I skipped one day of instills due to irritation of the urethra. Hopefully tomorow will be better.

Maria

[meme]

I had a burning sensation almost everyday and was not sticking to the diet well because I could still function. Lately though I have been following it strictly and have felt so much better. I still have bad days, but sometimes I have days where I have no burning at all so to me sticking to the diet is worth it now. No more chocolate or tomatoes for me, just not worth it anymore.

[izazen]

Almond milk helps - I heat it up.

[mary124]

Up till recently, I didn't have any burning however, just in the last week or two, I started, nothing to stop me from going about my day.

[leelee88]

I have been burning lately to, Im wondering if its my meds..

[patricia1]

I have the burning feeling everytime I go to the bathroom.

[Lexiebug]

The vaginal burning is the worst for me, the pain of it all (even with methathadone:() the burning I describe like shingle nerve pain, like a torch on fire on my vagina, along with the clitoris that never stops twitching, it will come and go, never a full day but it will lessen and then I have no idea what helps it. I wipe with a wash rag and I use lydocaine cream they allow me to stick up as far as I can go, it is sad, it is so uncomfortable, sitting is so uncomfortable so I pace but pregnant and with fibro and the pain, I need to sit, so it is a no win situation, the burning is felt more sitting but when you are so sick with pain you have to sit.

It is like nerve pain, the botox, last week, they went right into my clitoris and my vaginal wall and nothing.:( Botox is for muscle pain so it has to be nerve pain which is sad, I hate it, I would do anything for it to go numb, to me it is so consuming, I cant take it and it does affect my world to have a normal life when it is bad, three little kids, so uncomfortable. I try to tell people, pretend you have hemheroids in your vagina and it is on fire, yet nothing helps it.

If anyone ever gets help with it, please tell me, I feel it is referred pain or it is the urine that hits the area and we are allergic to it, like sunburn pain.

Good luck to you all, it is very sad.

Love,
Amy

[katievarga]

That is one of my worst IC symptoms, It feels like I have a bladder infection, always in the morning, after my first pee of the day. I stopped taking my elavil? It made me too tired, it has been pretty bad since i stopped. I was only taking 30 mg at night. I think I might have to take them again. I also sit on my leg, I can't wear jeans either. I am so happy I am not the only one. I don't have alot of pelvic pain, but in the last few days, I feel alot of cramping. I had a miscaraige 10 days ago, and I still haven't gotten my period, so I don't know if it is my IC or cramps.

[leelee88]

Katie,
I know how you feel,
If you stopped your Elavil that might be why you are burning more, I take Elavil 25mg at night I went off it one time BIG MISTAKE.
But you really need to talk to your Dr. because medicines like Elavil should not be stopped all of a sudden, I had to lower my doses and then come off it it..

[katievarga]

ronda
I know I should wein myself off, But I think I will be going back on them. I am in alot of pain right now, and my Dr won't give me anything short term for pain. I am going to see a dr/councellor, regarding pelvic pain. But the wait list is 6 months. I still don't understand what it is I should feel with IC. I have a mild case. So I don't know if the cramps I get can be from the IC, or what. I know the burning, and that "uncomfortable feeling" (the only way I can describe it) is the IC. Thanks
Katie

[leelee88]

Katie, I have the burning feeling also a constant urge that I have to go all the time even if I dont have to, I also have like a throbbing feeling in down there, My Gyn said it was a part of IC but called it Clitordynia.. If you need more info on this please pm me:smile tee

[mckinney906]

my main complaint is the burning. I could live with the urgency but the pain from peeing is sometimes unbearable. I explain it as hot sauce coming out of your pee hole :rant:

[cyndib]

I had a major flair last night. Not sure if I ate something I shouldn't have or if it was from a 25 mile 4 wheeler ride.

I immediately took 2 urised, my regular doses of Elmiron, Wellbutrin, Elavil and Effexor. I also applied the heating pad to my abdomen and laid on my side. For the vaginal burning, I applied an ice pack wrapped in a towel. It really helped. I don't know if you have ever tried the iced pack but it always seems to ease the burning.

I think I may have pelvic floor dysfunction now, as I can't always seem to hold in my pee. Going back to the dr. to see if they can trade the Elavil for topomax and/or what they want to do about the possible pfd.

[OUCHitis]

Sometimes the burning is so bad that I dont even want to move out of bed to pee...I just lay there in agony. My hubby feels so badly for me because he doesnt know howto help. Theres times where I take the Urostat for relief and then use cold wash clothes on my "private" areas because it also burns and hurts there. I too use to feel like I had bad bladder infections and yeast infections only to find out they were false alarms and no one knew how to help me...I tried creams and such nothing helped. As far as the burning there are times I feel like ripping out my urethra because the pain and discomfort is horrible.

[KristiV]

I also have been having issues with burning on my urethra and my vagina. I was itching as well on my vagina. My gyno prescribed estrace cream for the outside every night and replens which you can find at Walmart for 10 dollars. He told me to put this inside twice a week. He felt that I was dry and that I might have torn a little on the outside from being dry. I started this on Monday and have not had burning or itching on my vagina very much, if at all, since then. That doesn't mean that I am not still having issues with the urethra, but if you are having problems with your vagina, you should try the replens.

Kristi

[futurehope]

Thanks for the reply. I am going to my gynecologist tomorrow and will mention the Replens to him. The Estrace cream made me smell funny so I didn't like it. I now use Vagifem inserts.

[pj77]

Burning pain is/was my main symptom. I had it constantly in the beginning when I was diagnosed and before starting treatment. But I also had other symptoms with it . It was very bad in the beginning, unbearable without pain meds.

Now that I have been better with Elmiron I still have the burning from time to time, but usually related to what I eat. Certain things cause burning, but it is not as intense now that I am on the Elmiron-so yeah I will eat the things anyway because it's not that bad, and sometimes I just have to give in to some food cravings.

I have found that my bladder does better with lots and lots of water and I do better if I keep my urine concentration down with lots of it. Otherwise I can still get that burning sensation, even if I have been good with foods.

[ESKIMO]

I WAS DIAGNOSED 7 YRS AGO & ALWAYS HAVE PAIN. MY PAIN LEVEL IS A 4. IT'S LIKE RIDING YOUR BROTHER'S BIKE & FALLING ONTO THE BAR. MY PROBLEM IS I'M ALLERGIC TO ALOT OF THE MEDICATIONS, ALTHOUGH ONE OF ICER'S SAID TO USE A SQUIRT BOTTLE FILLED WITH WATER AFTER. IT DOES FEEL COOL, BUT I STILL HAVE PAIN EACH TIME I GO. I KNOW THIS IS AS GOOD AS IT WILL GET FOR ME RIGHT NOW. I DO ALOT OF PRAYING & THANK GOD :pray: FOR WHAT I DO HAVE. OUR LIFE IS BUT A WHISPER IN TIME, MY DAD WOULD SAY & IT'S WHAT YOU DO WITH IT. ALTHOUGH I DO HAVE BAD HAIR DAYS, & YES I DO DOUBT MY SELF SOMETIMES, I'M SURE WE ALL DO. BUT WE CAN'T LET THE NEGATIVE GET US DOWN. I HAVE FAITH THAT THEY WILL FIND A CURE.:pray: THIS IC SUPPORT GROUP IS A GREAT COMFORT TO TALK TO OTHER'S WHO KNOW HOW IT FEELS & CAN HELP. TAKE CARE & I PRAY YOU GET RELIEF.:pray:

[Tip and IBS]

During a flare, I seem to experience burning that intensifies as the day goes on. I assumed it was from chemical urine irritation, but my urologist told me the burning was caused by nerve irritation in that area.

Still don't know who is right.

:angel: Mimi

fms, ic, ibs, migraine, etc.


IT KINDA MAKES SENSE SINCE MY BURNING ALSO INCLUD MY SIGMOID COLON IN FRONT OF THE BLADDER.

IS IT PUDENDAL NERVE OR WHAT?
DID YOU HAD ANY TEST TO SEE THE "NERVES IRRITATION"?

APPARENTLY MRI HELP TO SEE NERVE "DAMAGES".

This is possibly something we will have to treat as PAIN rather than torn muscle and so on....(i'm just guessing here)...