my new pain management strategy

[flowerangela]

since i dont have anymore pain meds and may not have any possibly until tomorrow evening,i was hurting so bad i had some of that stuff in my medicine cabinet you use for a toothache.its the kind that also provides a cooling sensation feels like menthol i knew it was a numbing agent.so i used some of that up there and the pain is almost completely gone,that and a complete shout out to God help me please.i dont know if its bad for that area down there but considering all the stuff they used to numb me in the hospital i dont think it will do any damage.. im damaged anyway sigh its max strength orasol gel benzocaine 20%. i feel so crazy but it worked.

[cmclien]

Benzocaine can be used vaginally or rectally and I'm glad it helped you! But be careful how much you use as it can be absorbed into your blood stream. I think they say, 3 or 4 times a day max. They make a rectal suppository, you could ask your doctor if it could be used vaginally at night. That might help you more. Make sure you ask your doctor about it tomorrow. There is a pain killer that people here use which is a suppository. I am not sure what it is called and it it is benzocaine or not. Maybe someone will post.

[bubbe1]

pain

Hi,
I don't have experience with Benzocaine for bladder pain, but I did notice that you said you were out of Klonopin and couldn't get more because you're not seeing your psych. I wanted to mention that I have been taking Klonopin for years, for restless leg syndrome, and it was given to me by my GP, not by a mental health professsional.
You might want to talk to your regular doctor about that ,if you feel that it helps you.
I hope you feel better.
Laurie

[flowerangela]

well the problem is when i was living out of state i was prescribed klonopin in a hospital by a psych.and i dont have a local psych here in my hometown and dont feel like going to one.. i do get the zoloft from my primary care doctor.i feel like i am going through withdrawal from klonopin but have been on it less than a month on a low dosage so i really cant tell. thanx for the advice.

[Snowden1]

Klonapin is very addictive and I am on a small amount of it daily also. My doctor said not to go off cold turkey. I would call to make an apt with your pcp to get more or you may feel really sick. One of my better uro's prescibed it to me.

I would say it is probably not a good idea to put stuff into your vagina or urethra in your medicine cabinet. Although, I really do understand your desperation and would have probably done the same thing. If you can get a scipt - I know there are some kinds of suppositories that may help you.

Anyone know what they are called????

[sailawaygrl]

OK don't think this is petty, but yes klopapin is a strong drug and we become dependent on it and other drugs. When you are using a medication for legitimate reasons you are not an addict, you are physically dependent upon the medication. I know we know that difference but if other's hear someone say that or read it, they think differently.

The two types of suppositories that I am aware of are B&O(belladonna and opium) and vaginal valium. I use both of them. The b&o are usually for strong spasms that you can't stop. The valium I use nightly for pfd.

The thing that y'all are talking about, it is to numb the area. Aren't they some kind of jet something? Some people use them before instills to numb. Can't remember the name right now. But it might just be called a lidocaine jet.

Sandra

[Snowden1]

Sorry, I didn't mean to say addictive, I meant to say dependent. As I am on it as well.

[flowerangela]

pain free for hours now and not really worried about withdrawal from klonopin.. wasnt on it that long..less than a month.

[sailawaygrl]

What kind of pain do you experience? Is it external? Or urethral spasms? Just wondering how the numbing gel could help. My pain is totally in my bladder and even when I do have external discomfort it is from nerves so nothing externally will help. Interesting that the gel helped you. Maybe you can get your Dr to percribe you lidocaine gel, for exterior use or like Briza said the urojets.

Good luck, glad you are pain free!
Sandra

[flowerangela]

back to in pain again today and no meds... see my previous post about the drs office. my pain is internal.i cant tell if its my bladder or some kind of gyn problem. but since ive been having utis.. they assume its my bladder.

[cmclien]

Did you say where you put that gel that helped you so much? That would really help figure out where your pain is actually coming from. If you put it vaginally and all your pain went away then you got to wonder.....or did you put it in your urethra? even that would help your doc figure it out because then the pain would be in one spot maybe.

Are they open today? When you talk to them, make sure you ask to talk to the doc about your diagnosis and what exactly he found.

[flowerangela]

hes out of town and they only have the fill in girl i dont know if shes a nurse,np,dr or what. but shes not very helpful. cant give me a reason for the diagnosis. cant find a non narcotic pain med (since hes out of town no narcotics) will not order me a suppository. i cant really tell if its my vagina or my urethra. thats supposed to be the drs job i do know the pain is concentrated in one area though.

[amaranthe]

i cant really tell if its my vagina or my urethra. thats supposed to be the drs job i do know the pain is concentrated in one area though.

Yes, it is true that it is SUPPOSED to be the Drs job, but many of us on here have been IC patiets for many years (I have had IC for 9 years and know several here who have had it over 30 yrs), and many STILL dont know where the pain is coming from (if it is from the urethra, bladder, vagina, pelvic floor, adhesions, endometriois, fibroids, cytocele, etc.) There are just too many places it could be coming from and most are impossible to rule out, even for IC experts. So, your Dr. may never know where it is coming from, no matter how hard he tries

That's why if you want to get better, you will have to take an active part in helping your Dr. find the root of the problem and where the pain is originating from. That's also why other patients said that if the numbing agents helped you, then that was great because that means the pain could be coming from that area rather than your bladder.

Some patients inadvertantly find the cause of their pain by doing exactly what you did to get relief...using numbing agents. Others try to find the source of the pain (or to see if it is referred pain) keeping food and pain diaries to see if they can find any triggers or patterns. Alot of patients also keep med diaries of when they take their meds (espcially breakthru pain meds) and what they were doing before the pain started, how long it took the med to work and the amount of pain they were in before and after taking the med on a scale from 1-10.

Some patients, (myself included), have even had surgeries to try to find the cause. (In my case, I have had laproscopic surgery that found endometriosis and adhesions and adhesion related disorder.) I have also had my gallbladder removed. Even though it was full of stones and quite inflamed and infected, (so it had to come out), they still thought that it might help improve my IC. They said it could have been referring pain to my bladder. I have also had a cystoscopy w/hydrodistention. This is a a common diagnostic surgery that a large percentage of IC patients have undergone to find the cause of their pain and also b/c they are told that it might have a theraputic effect since it may temporarily enlarge the bladder capacity. I also have had a total hysterectomy w/ cervix removal, b/c of the severe endo and pelvic adhesions, but also b/c since I couldnt tell where the pain was coming from. My Dr said it was difficult for him to treat the pain, since he couldnt tell either if it was my bladder or if it was my endo referring pain to my bladder too. I have also had my appendix removed and they did complete exploratory surgery at that time where I was cut from my belly button all the way down to my bikini line so they could examine all of my organs at the same time to see if they could figure out where the pain was coming from.

I also know lots of ICers who have IBS and because the bowel and bladder are side by side, each area refers pain to the other area. So, they dont know where their pain is coming from either.

Then of course patients with urethral syndrome are often told they have IC instead of that because the symptoms can be so similar.

There are lots of patients who have back pain and IC and they dont know if it is their backs referring the pain to their bladders or their bladders referring pain to their backs.

But one of the ones that is most frequently confused with IC is Pelvic floor dysfunction. I have seen a ton of "IC" patients over the years who posted here almost daily and then one day they came on here and posted that they had been misdiagnosed and dont have IC after all, instead, they have pelvic floor dysfunction.

Also, let's not forget the poor fibro patients (like myself), who hurt all over, so we almost never know if it is fibro pain or IC pain.

Hopefully, after all that I have written you will now understand that it is most certainly NOT a given that your Dr can or will EVER find the source of your pain. .It's definately not something you should take for granted just because "it's his job." As you can see from the aforementioned examples, it is far more likely that he wont find a cause for your pain than it is that he will find the cause. Meanwhile if the numbing medications do help you narrow down the feild of pain or rule out an area, make sure to let your Dr. know. After all, they need all the help we can give them!

Hope you feel better soon!

Hugs,
Amaranthe

[cmclien]

Amaranthe, good points you made. You sure have been through alot, I really feel for you! I was thinking if it wasn't the bladder then diet wouldn't help those people. Now that I have been mostly following the diet daily, I can eat something and in an hour or two feel it as discomfort. The other night I ate only a tbsp of salsa and felt it. Also for me anyway bladder pain is higher up then urethral pain but maybe I can tell because my pain is mild. If it were severe it would probably be harder to tell.

Angela Hope you are feeling much better today! DO make sure you let your doctor know where you put that numbing gel when your pain went away. Also, when my doctor did my exam vaginally and pressed against my bladder wall it was totally what I feel day to day with my discomfort so it helped him know it was in fact my bladder. The rest of my exam was uneventful though he had me tighten muscles etc maybe to test for pelvic floor dysfunction which I don't think I have at all. At least not from the symptoms I have read about though might mention it to my gyne at my annual exam.

[flowerangela]

i think my pain is coming from my urethra? as that it where they place the foley cath right?

amaranthe, i did not mean for my post to come out the way you interpreted it..i do sympathize with people who sound like they are in worse pain than i am such as yourself.

i was saying that it is supposed to be the drs job meaning because i have little knowledge of which organ is which--the female urinary/reproductive system can be confusing sometimes for me. he would literally have to take a gloved hand and push on the spots inside of me to determine where the pain is coming from. he hasnt done that yet.thats one reason i said..supposed to be his job.

im very frustrated with my uro as ive vented on the boards the last few days. i had to go to the er to finally get relief because he decided to take a 5-7 day vacation and left someone to "fill in'' at his office that had no clue about his patients,especially me,a new IC patient.she didnt even know what ic was,much less what pain meds to call in for me.i kept saying to her..read the chart..she never called me back.

later that evening, i went to the er and although they were mad because they were er drs and felt like they needed to be treating someone with trauma or an icu like condition one of them finally understood when i explained to him what ic was and what it felt like to be in severe pain to the point where i couldnt pee and how i had gotten a diagnosis from a uro with no explanation. my dr's nurse told me just a cysto found it when the dr told my family member my bladder looked completely normal on the cysto .... so im thinking hes diagnosing based on the symptoms ive told him alone?

i have a meeting with him tues about this issue and i dont care how much pain i am in i will go this time.because i need answers. my IC diagnosis was SO quick and i dont feel like its IC. i feel like its something else

since i went to the er,ive experienced a lot of pain relief. they gave me diludad thru an iv,they refilled my percoset which i couldnt get filled by my drs office simply because 'my dr wasnt there', the er hooked me up to a foley so its now possible for me to pee,tested me for a uti,gave antibiotics and other things to make me feel better. the 6 hour wait at the er was worth it as opposed to waiting a week or two to get/make an appointment with my dr.