hey just wondering something...

[stef000]

I might have asked this before:shake:...but i don't remember and also someone else might have too but thought to ask just in case...:rolleyes:
i was wondering if anyone has pelvic pain everyday due to their IC and/or uterine problems??? :confused:
and also if you do, do other treatments such as instillations or other things help that pain??:confused:
just wonderin....:rolleyes:
i hope all are doing well today :pray::pray:
definitely need more good painfree days :pray:
:grouphug::grouphug:

[Claredale]

Back when I was dealing with all the symptoms with IC, yes I had pelvic pain everyday. I was never one that instills worked on. They made my symptoms worse, but my doctor gave me pain meds as well as other meds to help manage my pain. I also pretty much lived with my heating pad night and day. Even had one for the car plugged into an AC/DC outlet.

It took alot of med combos and eventually the interstim to help all of my symptoms were manageable. Now, I still take meds, but not nearly the amount I even took last year at this time, but the majority of my days I feel quite normal. Nights still are totally great, but I am no longer in the den suffering through the night. That is when my pelvic pain was at it's worst.

[aleet7]

I might have asked this before:shake:...but i don't remember and also someone else might have too but thought to ask just in case...:rolleyes:
i was wondering if anyone has pelvic pain everyday due to their IC and/or uterine problems??? :confused:
and also if you do, do other treatments such as instillations or other things help that pain??:confused:
just wonderin....:rolleyes:
i hope all are doing well today :pray::pray:
definitely need more good painfree days :pray:
:grouphug::grouphug:

I tend to have a dull ache most days and sometimes milder or stronger on other days. That's maybe because I'm getting over a Uti. When I wasn't diagnosed with IC I hurt everyday for 8 months(probably because I was eating and drinking things that irritated my bladder).
I've never had instills but I did have pelvic floor therapy. The Tens Unit helped me a lot! I also drink lots of water when I'm hurting and take a pain reliever. I'd stay away from Advil or Motrin because they tend to irritate the bladder. My doc prescribes Vicoden for me when I'm in a flare. I also use my heating pad sometimes when I'm in pain. I hope that your'e not in pain everyday! If you are then I'm so so sorry! I hope this helps some.
Best Wishes,
Teela

[aleet7]

Back when I was dealing with all the symptoms with IC, yes I had pelvic pain everyday. I was never one that instills worked on. They made my symptoms worse, but my doctor gave me pain meds as well as other meds to help manage my pain. I also pretty much lived with my heating pad night and day. Even had one for the car plugged into an AC/DC outlet.

It took alot of med combos and eventually the interstim to help all of my symptoms were manageable. Now, I still take meds, but not nearly the amount I even took last year at this time, but the majority of my days I feel quite normal. Nights still are totally great, but I am no longer in the den suffering through the night. That is when my pelvic pain was at it's worst.

Tracey,
I have a question for you. Did you feel like you were taking a lot of meds to deal with the pain? I totally feel like I'm taking a lot of med combos too especially since I have a UTI right now. My husband is concerned about me getting hooked on pain meds! I tell him that I only take something when I need it but he's very overprotective. I feel like I've suffered so bad especially when I didn't have my diagnosis! My doc only gives me one script for pain meds with no refill ever(and sometimes it's only 20 tablets)! Is that how your doc did?

Teela

[Briza]

Stef
For the year before I was diagnosed I was in daily round the clock pain, and even after that until I got my symptoms under control with diet and the right combo of meds. Since then I have had many many days where I would start the day with no pain, but by lunchtime and getting tired from being on my feet at work the pain would set in. Luckily my meds worked well for me and if I took a pyridium or pain med at the first twinge of pain or burning I would usually not have to take more than one dose a day. That's how it worked out for me.

Aleet...yes at times it seems like we have a lot of meds to juggle!! But what most people who don't understand completely IC (who does, really:)) and it's complicated and various symptoms is that we usually are not taking ALL of the meds at the same time, unless in a flare, for example...once I learned which med helped with which symptom, I knew what to take and when. If I felt only burning, I would take pyridium and drink lots of water, if I felt only pain, I would take only my pain med, if I felt only frequency, I would take or increase my dose of Elavil, if my back hurt, I would take a muscle relaxer or use cold packs in addition to the pain med. If I was having ALL of those symptoms, then yes, I would take all of my meds.
Yep, a lot of people freak when they find out you're taking Rx pain meds in addition to all the other stuff we get Rxd...even if you're taking them sparingly and only when you need them. I see in your list of meds that you take Darvocet...it is probably the lowest level of narcotic pain meds, and if you are only getting 20 at a time then there is no way, IMHO opinion, that you are going to become "hooked" on it. Now granted, if you were taking it round the clock everyday, your body may become physically dependent on it, but if you were to need that much pain medicine then again JMHO, you need a stronger pain med that would cover your pain so that you could take less of it. If that IS the case and your dr isn't willing to prescribe you something different or even a bit stronger than Darvocet...Ultram, Tylenol 3, Vicodin, you can always ask for a referral to a pain clinic.
Tylenol 3 has been my main pain med for almost 5 yrs now and I have never b/c hooked on it or nor physically dependent on it.
Best wishes, Bri:)

[aleet7]

Briza, you answered every question I was wondering about. My husband had me questioning myself about all the different meds that I take! Just like you I know what to take for what symptoms but he doesn't listen, he thinks he knows best. OMG, about Darvocet, I was wondering why this med did very little for my pain! I hate it that my doc(uro) makes me beg for something when I'm in a flare. I got 20 Vicodin when I called his nurse and told her that I was hurting bad during a UTI! I finally decided that I need to call my pcp and ask her for help with this. Thank you for responding to my post! You just eased my mind about the med combos!!!!!:angel:

Best Wishes,
Teela

[Briza]

I'm glad that anything I said was of some help:) Most uros it seems do not like to be in charge of pain control. My gyn is my IC dr and he Rxs my Tylenol 3 and all my other meds. He could prescribe me vicodin, but he flat out told me when he first gave me Tylenol 3 that that would be the strongest pain med he would prescribe.
I did get Vicodin from a pain clinic at one point, but for whatever reason it did not work AT ALL for my pain, just made me itchy and b*tchy. It seems not many here on the board take Tylenol 3 for pain, more often vicodin or ultram, but T3 has worked fantastic for me. I tried Darvocet at one point and it did nothing.
Ultram is a pain med drs may be more willing to prescribe because it is not considered narcotic, but many here take it with great results! So yes, there are other options and you may very well be able to get a different pain med (and hopefully a little more of it plus refills) from another one of your drs, whether it be your PCP or gyn, that works much better for you than Darvocet. Tylenol 3 is just one step up from Darvocet, I think, but it has been my lifesaver more times than I can count.
Best wishes...Bri:)

[aleet7]

I'm glad that anything I said was of some help:) Most uros it seems do not like to be in charge of pain control. My gyn is my IC dr and he Rxs my Tylenol 3 and all my other meds. He could prescribe me vicodin, but he flat out told me when he first gave me Tylenol 3 that that would be the strongest pain med he would prescribe.
I did get Vicodin from a pain clinic at one point, but for whatever reason it did not work AT ALL for my pain, just made me itchy and b*tchy. It seems not many here on the board take Tylenol 3 for pain, more often vicodin or ultram, but T3 has worked fantastic for me. I tried Darvocet at one point and it did nothing.
Ultram is a pain med drs may be more willing to prescribe because it is not considered narcotic, but many here take it with great results! So yes, there are other options and you may very well be able to get a different pain med (and hopefully a little more of it plus refills) from another one of your drs, whether it be your PCP or gyn, that works much better for you than Darvocet. Tylenol 3 is just one step up from Darvocet, I think, but it has been my lifesaver more times than I can count.
Best wishes...Bri:)

Bri, again your info has been very helpful to me. I didn't know that Uro's had a problem with writing scripts for pain meds. My Pcp has been very helpful to me so I'll try calling her or at least asking her to refer me to a pain clinic. I have most of my problems in the evening(pain issues). They totally keep me from sleeping. It's like I'm busy all day and then when I lay down I can focus on the pelvic ache or burning feeling. I take Benadryl and valerian root and it's not helping me as much as vicodin does. I'd be happy if they would prescribe me Tylenol 3, I just don't like having nothing to deal with the pain. I've been saving those 20 Vicoden for absolutely horrible days! I'm so scared of running out of pain meds that some days I hurt until I can't take it anymore then I take one(I hate suffering like that). You have been so helpful!:woohoo:

Thanks,
Teela

[elitynski]

Just curious - when I run out of Xanax would Valerian root be something I could take??

[Briza]

Just curious - when I run out of Xanax would Valerian root be something I could take??

I don't know much about Valerian root but I am very well acquainted w/ Xanax. This would have to be something to discuss with your doctor, especially if you have been taking Xanax for an extended period of time and also how high your dose is. Stopping Xanax can be difficult, I know from experience, and the withdrawal symptoms can be from severe to downright scary and life-threatening. If you have been taking it for sometime, PLEASE work with your prescribing dr to wean you off of it...depending on how long you've been taking it and how high your dose is it can and will affect you if you stop taking it cold turkey...I don't think that it can just be replaced with Valerian root right off the bat.
Best wishes, Bri:)

[aleet7]

Just curious - when I run out of Xanax would Valerian root be something I could take??


I've been acqainted with Valerian root for years now. When I first started taking it, it worked very well for me. I'm a person with a weird tolerance for meds. If I take it long enough(one or two months) it loses it's strength. Several times I've taken Ambien and slept for 3 hours and then got up for the rest of the night. I simply can't rely on anything for too long. Sometimes Valerian works for people and sometimes it doesn't. It wouldn't hurt to try it. It is non addictive. It knocks my 200lb husband totally out for the night.

Best Wishes,
Teela

Ps. Briza made some very important comments about Xanax.

[SharonA]

Eric...Before you try this herb, you really should first talk with your doctor about it. I am not sure how long the Xanax would stay in your system after you are no longer taking it. I think it is a good idea to do a search on this herb to learn what it might do and what the side effects are, if any.

[Briza]

Sharon is right, before adding anything to your regimen, whether it be an alternative/natural treatment such as Valerian root or any OTC or prescribed med, always best to check with your doctor and/or pharmacist to be sure that there won't be any bad interactions. I find it is helpful to do some research of my own before approaching the doctor or pharmacist about it, so that I have in mind some specific concerns I can question them about.

The thing about Xanax is that it can be out of your system very quickly, but the withdrawal effects can sometimes last for a (very) long time...like I mentioned before much of that has to do with how long you've been taking it and how much you've been taking.
Definitely Xanax and other similar anti-anxiety meds have their place and give great and fast relief for anxiety and related disorders, but coming off of them after taking them for an extended period of time is *#&$ hard, and usually requires the help of a doctor to slowly wean off. It sux that I am in this position right now, but I am trying not to beat myself up about it because I have had very real symptoms and reasons that required me to take it to function and try to lead as normal a life as possible.
So I am in that weaning off process right now...and thank God I have a dr who is helping me do it over a period of many months, however long it takes, rather than taking me off it cold turkey. I tried to wean myself off within a month's time and it was a disaster. After expressing my concerns with my dr, we have come up with a longterm plan that I am comfortable with and is not causing me any rebound or breakthrough anxiety, or withdrawal symptoms. I am so thankful for this dr helping b/c I know some drs will just out of the blue refuse to prescribe any more and that is so very dreadful.
If anyone is interested in the weaning off protocol that I am using, pm me and I can refer you to the website that has extensive information about weaning off just about all of the anti-anxiety meds. The website is legit and does not promote or sell anything, just gives a very very thorough explanation of how the anti-anx meds work and exceptionally detailed info on how to wean off of each of the anti-anx meds....
Bri:)

[Claredale]

Hey Teela, looks like Briza did a great job with your concerns. I go to a uro/gyno, prior to that I was treated by a pelvic pain specialist, both of which have been the doctors to prescribe all my meds for IC. Both Darvocet and Vicodin didn't do a thing for my pain, either did Ultram or the extended release one either, but as has said many times, we all are different with meds.

You mentioned that your body is strange because you get used to meds after a short time. That is really very common. I have been that way for so long, which is why I pretty much go back and forth with different meds. Luckily Lortab has been able to manage my pain for the majority of my IC life. Even when my symptoms became severe, I told my doctor that I wanted to stick to the shorter acting meds if at all possible, I was so grateful that I stuck to them. With other meds I have to change them up instead of going to higher dosages. That is what worked, so again, I was lucky. With sleep meds, my body conquered Ambien very quickly as well. I now go between Lunesta and Rozerom every few months.

As you may have noticed I said when I used to have everyday pain, was when I was in pain 24/7 and was taking a Lortab every 4 hours and pretty much counting the minutes before I could take another dose. Prior to my interstim, I pretty much had all my symptoms going on all the time with the freq/urg, pain, no sleep, spasms. The spasms were so strong, I can remember that I used to shake my riht leg almost constantly. It drove my husband crazy at night when I would start having spasms. I couldn't help it, I was just in too much agony with everything. The only symptom I really didn't get to "enjoy" on a constant basis was burning. I don't know if that was because I was very careful with my eating, drinking lots of water, etc. I sometimes had that little sting at the end of my stream, which sometimes was so painful that it would make me scream out. Which wasn't always easy to keep that to myself while at work, but my co-workers at the time definitely knew my situation, plus I was given access to the workout room's bathroom which was just a around the corner from my office. My boss knew that I had to "concentrate" to go to the bathroom. I was very lucky back then to have a work group that understood.

I also wanted to comment about your husband's concerns. I remember when I was first starting to take my pain meds around the clock, my mother being a retired RN was very concerned about my meds. She didn't make me feel guilty or anything, just worried like a mama would be. I had already had the discussion with my doctor about it, so I was fine, but I invited my mom to come talk to my doctor. We were also going over my interstim surgery, so I figured that was taking care of everything she needed to know. Dr. Doggweiler told my mom that it was important to keep my pain managed as best as possible. It was best to take my pain meds when I felt my pain level building, because once your pain gets past that certain level, the pain meds are useless. I stayed in the 5 to 7 bracket on the pain scale on a regular day. Flares were sometimes above that if I didn't do my little tricks to keep my pain down. Anyway Dr. Doggweiler calmed my mom's fears. I was taking the pain meds so that I could function. She even used examples of if I had diebetes, I would need meds to control that, heart problems, etc. I did have my liver tested especially during the time I was on so many kinds of meds and my liver was always handling it great. I never considered myself as dependant, even though there were days that I was running low on my meds, prior to an appt, I would get a little anxious about what if I have a flare, etc. My doctor was quick to calm my concerns and if I actually was running out, she would call in a few or else move up my appt. Now that my interstim is still running smoothly and my meds actually seem to be working, with the changing up of my sleep meds, I am down to 1 to 2 pain meds a day the majority of the time as long as I stay away from my triggers, which is hard in the summer since I tend to stay busier and want to do more than I really should.

Sorry to rattle on.

Tracey

[aleet7]

Tracey,
Thank you for sharing that with me! You absolutely did not rattle on because i was hanging on to everything you wrote! I totally do not feel like such a freak now that you mentioned that it isn't uncommon to get used to meds until they don't work for ya.

I've been in an aweful flare for two weeks now! I went out of town to spend time with my dad and mom! My dad had a stroke and I've been so stressed out not to mention in agony with a flare! My dad passed away this morning and I'm still in a flare! I came home just to go to my appointment with my uro. I am desperate for help right now dealing with pain! I'm already broken hearted over my dad and in the middle of an awful flare! I have to go back out of town to help with arrangements and I don't know how I'm going to hold up without pain meds or pain meds that don't help!

Thank you so much for sharing!
Teela

[anewday]

I have daily pain. It varies to some degree. It used to get excrutiating pretty regularly to the point of crying but with treatment it has gotten better. Instills help with bad flares for me but not so much with day to day pain. It's always there, but I have hope that someday it won't :)

[Claredale]

Teela, I am so sorry about your dad. I hope he didn't suffer very long. When my grandfather had a stroke, a couple of years ago and as hard as it was for him to die so suddenly, it was a relief to know that he didn't suffer.

You and your family are certainly in my prayers. I so wish you had some meds to help you, because stress is one of my absolute worst triggers. Try to drink and eat to keep your energy level up. Also remember you can't do everything so when people ask you what they can do, please tell them. I know most of us just say thanks and go along pushing ourselves at times like this. But people really do want to help.

Hugs and prayers!
Tracey

[Dreamlove15]

Hi,

I'm sure this is already known by my recent posts...

But my IC is RAGING everyday...

since I had the cyst and period issues, everything gotten even worse...

So to answer your question.

Pain is something all too familar...:(

[aleet7]

Teela, I am so sorry about your dad. I hope he didn't suffer very long. When my grandfather had a stroke, a couple of years ago and as hard as it was for him to die so suddenly, it was a relief to know that he didn't suffer.

You and your family are certainly in my prayers. I so wish you had some meds to help you, because stress is one of my absolute worst triggers. Try to drink and eat to keep your energy level up. Also remember you can't do everything so when people ask you what they can do, please tell them. I know most of us just say thanks and go along pushing ourselves at times like this. But people really do want to help.

Hugs and prayers!
Tracey

Thanks Tracey!
My dad had a stroke 4 weeks ago. It basically took him from us since he went in a coma and never came out!
I went to my uro today and he had me have an Elmiron instill and told me to by uristat over the counter! I'm so upset with him today! I told him how I needed to feel better to go out of town and he didn't care! The funeral is Friday and I'm hurting like heck especially since I just had an Elmiron instill! I feel like my insides and urethra are on fire! I called him to tell him that I feel worst than when I saw him earlier and he and his nurse are gone for the day! I can't even sit on my bottom, I'm leaning on one hip! Every drop of urine feels like acid to me! I pray that I feel better because whether I am or not I'm going to my dad's funeral!

Teela

[SharonA]

Teela...I am so sorry to hear about your dad. :(

Have you tried AZO (Pyridium, Uristat) before? It does help me when I am having a flare. Stress is my #1 trigger. If you haven't tried it, it might help.

[aleet7]

My doc told me to buy Uristat but the pharmacist told me that they didn't carry that. She told me to by the AZO and it worked well. I felt a lot of negativity from my doc. He was acting surprised that I was in a flare( although I told him my dad passed away the day before) It's obvious that he didn't think that stress was enough to put me in a flare! Not to mention that my 3 year old was just diagnosed with nerve deafness in both ears!!!!! It's been really hard (mentally) lately for me. This board has been a great outlet and source of encouragement to me!
Best wishes,
Teela