Pressure

[mperry]

My main symptom is pressure pain. Has anyone found anything that helps relieve this symptom?

[ICLori]

mperry, that is my main symptom, too. For me, Ultram works to relieve the pressure/pain enough so that I can sleep at night.

Blessings,
Lori

[traceann]

I too used a pain reliever for that sensation. I used Motrin, but I am one of the ones who's bladder tolerates it with no problem. However, the intestines didn't, so I no longer take it at all... But sometimes the pyridium did help me out, and get some sleep!

Hugs!

[trytosmile]

Laying down and a heating pad is about all that works for me. I have it 24/7 so now adays that feeling feels normal.

[icsonja]

What exactly are you feeling,is it an intense need to urinate that is relieved by going,or is it a continous pain and pressure? And where do you feel it at, bladder,urethrea,pelvic,all over?
The reason I ask is that differnt types of pain need different medications, and for pain caused by the need to pee, meds like Detrol or Ditropan work for a lot of women, but if it is a constant pain, or a pain in your pelvis you may have to use narcotic pain relief, if advil and over the counter meds don't work.
I found for me that in a flare, when I have that awful "have to pee to stop the pain" every five minutes that I need a combo of meds;morphine for the nerve realted pain and pyridium to soothe.
I have been told that anti histamines help a lot with your symptoms too, ones like Atarax (which knocked me out, I was in a fog for hours) but again it helps many.
It may be best to seek a pain managment Doctor so that you dont end up taking meds you dont need and not getting the ones you do.Pain control has come along way and the stigma of being on narcotic pain control is slowly lessening.
I hope I have helped and not made you more confused. Let me know if you have any questions OK? And welcome to the ICN, its nice to meet you!
Sonja

[peaceplease]

I was going to put a post in about my constant pressure, but I will just add onto this. I can't handle much more of this. I mean when I read all of these threads about flares I am jealous, what is a flare, beats me, I have pressure in my lower pelvis and bladder ALL the time, unless I am lying down. Getting off my feet helps, but when I stand it hits again. It is all the time and I know there is no urine in there as I will pee and within 3 minutes it is back. The diet hasn't helped at all, everything is the same every day, day after day, never better, some days terrible, always bad. It is like a battlefield to cope all day caring for my children and doing all my duties. I am SICK of it and can't go on much longer with this quality of life.
So, for those of you who suffer primarily from pressure (or if what I describes sounds like your reality) please let me know what has helped most. I am NOT into pain medication at all... I have not done a hydro and I will NEVER do DMSO, just won't plain and simple. I am gonna throw in the towel on the diet as I have seen NO results from it and it has been 6 weeks. I go to PTherapy weekly and that has not helped either. I feel really really depressed and hopeless...

[massagedoula]

Peaceplease,

Pressure is/was my worst symptom of IC. Like you, I did not want to do the hydro. Also like you, I had/have constant pressure feelings. Flares to me are when it gets worse, though it is always there to some extent.

Anyway, I wanted to write this:
Don't give up on the diet yet. It took me 2-3 months before I noticed that it was helping me. Even then I thought it was minimal, but now, almost a year later, I can really see just how much it truly helps me.

Also, I currently have very little pressure feeling. It is amazing after 10 months of constant pressure that drove me to tears and sadness most of the time. It is still there but very muted. I hope it will go away totally soon. What has helped me is Elmiron, IC diet/sugar-free diet, and powdered marshmallow root. I think that they are in the order of importance, as I wrote them. Don't give up!

[peaceplease]

MDoula:
How long can you go now from the time you pee until you feel the need to pee again? Are you having a lot of sideeffects from the Elmiron, what about hairloss? The pressure you still have, is it something you are always aware of or is it so slight you barely notice it? Also, does the pressure rebuild more quickly than you consider normal if you are intaking water throughout the day?
Thanks for the reply

[traceann]

Just added in my 2 cents, lol. I have been on the Elmiron for close to a year now (the 19th of this month), and have had great success with it. I did take awhile, as is the way with it, but I wouldn't trade it for anything. No problems with hair loss, from what I have read, that side-effect only affects approximately 2% of those who take it, and if it does happen, it reverses once the med is stopped. I made a deal with myself to try if for at least 6 months.

At the very first, I had pain and pressure. But after a few weeks on the diet, when bladder was finally calming down, just the pressure remained. I had some days of 30+ potty trips. Seemed every 15 min I was feeling like I had to go, ugh. After starting the Elmiron, a couple weeks later we added in the hydroxyzine and that to me is when things started the upswing. The pressure started to subside, and the potty trips started coming down in numbers. Yippy!! I was doing so much better at the end of my 1st 3 months when I went it for my follow-up. Not a "normal" 100% (whatever that is, lol), but 100% from where I started.

For me the more water I drink, the better I feel. I may have a few more potty trips, but it keeps the urine diluted so it doesn't aggrivate my bladder nearly as much!

Sorry to butt in, but just wanted to share my experiences!!

Hugs!

[tlacey]

Peaceplease,

Your symptoms sound exactly like mine. My uro has suggested Interstim and I am considering it. I have yet to find anything else that works. I'm going to keep close watch on the replies to your post, maybe someone will give us both something worth trying.

[tigger_gal]

I too have pressure and pain, I find laying down with my heating pad or a hot bath helps, but only until I get up and move again.... Its been especially painful the last 3 weeks, with a uti and then urodymanics test.....
sending you big hugs and hope you feel better soon.

[peaceplease]

TLacey:
Have any of these medications helped at all? Did you ever have a hydrodistention? I appreciate so much the ICN, but it is hard not to feel even more worried when you hear of somebody with similar symptoms and not getting any help from various treatments. Have you found the diet helps your pressure? Do you also have pelvic pain and/or burning when you pee?

On the side WHAT is LOL? I read it all over and don't know what it stands for!
Thanks

[Godwillhelp]

LOL stands for Laugh out Loud....I feel like I am reading about myself here. I have the pressure feeling with the need to pee all the time too. Right now I am drinking a lot of water and using my TENS unit. My symptoms seem to get worse at night. I am one of those ones that worries about progression. My symptoms do different things and everytime I have a flare it seems that I am doing something new or worse. I have been to the doctor about the new symptoms and he can't find anything...no infection, etc. I read about the pain/etc. that a lot of people have to the point where they can't function and that scares the crud out of me. I have anxiety attacks with just the symptoms I have described. I can't imagine how horrible it could get especially since I can't seem to find the answer to symptoms like some people have. The progression thing freaks me out.....

[tlacey]

Peaceplease:

LOL means laugh out loud.

The medications all worked at the beginning. We're (me and my uro) aren't sure what caused the change. Several things in my life changed at that time. I went from a sitting job to a job where I stood 40 hours a week. I moved into a fixer upper. I took a cut in pay in order to stay with the same company and keep my insurance and it took me awhile to find a dr who here who treated IC. Before I moved a had seen my old uro and because I was doing so well we were beginning to wean me off the elavil and hydroxyzine and we were going to beginning weaning me off the elmiron this month if everything went okay.

I've read somewhere that whatever you do to tighten your abdomen (exercise, sex, etc.) causes your pelvis to tighten and possibly spasm which can cause your bladder to do the same.

I had urodynamics in October and I've been a lot worse since then. The uro said I have a abnormal bladder and an incompetent sphincter. Sounds wonderful doesn't it.

Keep me posted if you find something that helps and I'll do the same for you.
You can pm me anytime. I'm attached to my computer almost everyday while my husband is working.

[peaceplease]

I don't think IC is supposed to be progressive, at least that is what I have been told, and even by Jill O. of the ICN told me that it generally isn't, this much I am clear on. I also have been told it doesn't lead to bladder cancer (but you gotta wonder on that.)

TLacey:
It sounds like maybe you had a lot of stress maybe you were clenching your pelvic floor muscles and that put your bladder into spasms. Have you tried Pelvic Floor Physical Therapy?

The thing about Elmiron is it doesn't seem to HEAL the lining, just rebuild it temporarily. That is great the meds did work for you, maybe you can get back on them and start from the beginning and you will get better again, you said you were weaning off them...

[tlacey]

Peaceplease-

No, I haven't tried pelvic floor exercise. I was going to therapy on my lower back, but that didn't help my IC either; just made it worse.

We started to wean me off, but then everything started again so they put a screeching halt to that.

My uro thinks that Interstim is the only thing left for me right now.

[peaceplease]

Hi TLacey:
I forget if you had a hydrodistention? Have you been checked for uterine or bladder prolapse out of curiosity. I don't have this, but we still ordered a pessary for me since the pressure is so much greater standing, sometimes it will help a little bit... Worth checking out with your OBGYN.
Maybe giving physical therapy a try with somebody who specializes in tx. IC patients.
Take care and I will TRY to do the same

[Godwillhelp]

If it isn't progression....it isn't infection....what is with the new or different symptoms?

[mperry]

Hello All:
Thank you for taking the time to read and respond to my post.

ICSonja: My pressure is down in the pelvis. I always feel like I have to go to the bathroom but I never really feel like I have to go to the bathroom. I don't feel really urgency. When I start to feel urgency, it is a sign I am coming out of a flare.

Peaceplease: I've had IC for 6 years. For four years I went into remission. A hormone change brought me out of remission. I was formally dx April of 2004. Over this past summer I had almost pain free days. It took a year of Elmiron, Atarax, Clozapan Ultram and a few months of PT to get me there. I've been off the Colzapan and Ultram for months and I'm starting back up to relief the pressure I've had over the past few weeks. I believe I will get it under control again because I have in the past. Even the pressure I feel now is nothing like when it first started. IC is a real pain but you can get it under "control".

Thanks again for all the posts.

Maureen

[mperry]

BTW, I have much less pressure from standing or walking. When I have to sit for a long period of time, the pressure usually increases quite a bit. I now have a standing work station at work. Nothing beats lying down though.

[ICLori]

Just a side note - IC is progressive for some individuals. It is not impossible for the condition to be progressive. So if a person is having worsening symptoms and it is not a UTI or a flare, it is completely possible for it to be a worsening underlying condition.

I say this with some authority because I am one of the IC'ers whose IC has been progressive over the last five years. If you read various articles about IC, some doctors will say it is generally not progressive, others will say it is progressive. Depends on which doctor you want to believe, I guess.

Blessings,
Lori