Trying to stay positive

[chasingbliss]

Hi folks - i was diagnosed on 11/14 w/moderate IC after my cysto w/hydro. Earlier this week, I thought things were looking up b/c my symptoms seemed to be a little better than before the cysto (my main symptom is pelvic pain and painful urination). But over the last 3 days, things have gotten worse instead of better and yesterday and today I feel as tho I am back at square 1. The day i was diagnosed, I started the diet and I am scheduled to see my doc for my followup next Wed to discuss treatment plans. I know it often takes a while to see a difference and I was warned that that the cysto may not show any improvements.

I am still working through all the emotions that surround this diagnosis and trying to find peace with it but the thought of having this chronic pain - something that has impacted every part of my life - is terribly sad. I keep thinking of how i took a life without pain for granted.

I am taking Ultram for the pain (waiting for next week's plan) which is working well. I just don't want to think about how long I will have to take this medication just to be comfortable. I have had to work from home because i simply can't sit in a chair for more than 15 minutes. My desk at work is being raised to allow me to sit and stand throughout the day.

I guess i just needed to vent. Thanks for maintaining and participating in this forum. It really helps stave off the feelings of isolation and loneliness.

[icgennifer]

Hi folks - i was diagnosed on 11/14 w/moderate IC after my cysto w/hydro. Earlier this week, I thought things were looking up b/c my symptoms seemed to be a little better than before the cysto (my main symptom is pelvic pain and painful urination). But over the last 3 days, things have gotten worse instead of better and yesterday and today I feel as tho I am back at square 1. The day i was diagnosed, I started the diet and I am scheduled to see my doc for my followup next Wed to discuss treatment plans. I know it often takes a while to see a difference and I was warned that that the cysto may not show any improvements.

I am still working through all the emotions that surround this diagnosis and trying to find peace with it but the thought of having this chronic pain - something that has impacted every part of my life - is terribly sad. I keep thinking of how i took a life without pain for granted.

I am taking Ultram for the pain (waiting for next week's plan) which is working well. I just don't want to think about how long I will have to take this medication just to be comfortable. I have had to work from home because i simply can't sit in a chair for more than 15 minutes. My desk at work is being raised to allow me to sit and stand throughout the day.

I guess i just needed to vent. Thanks for maintaining and participating in this forum. It really helps stave off the feelings of isolation and loneliness.

Hi Jen

My name is Genn too (spelled with a G).. The post you wrote is EXACTLY how I am feeling and your symptoms are exactly like mine. Pelvic pain and painful urination. I don't have the frequency or urgency. I was just diagnosed on 11/6.. and I feel like my world has been turned upside down! My current urologist doesn't seem to know much about treatment options so I am going to a new urogyno. on 12/4. Im glad Ultram is working for you- that's what I was going to ask for since nothing Im on now seems to be helping. I'm glad you listed your symptoms because I thought that I was the only one who felt only the pelvic and pain and urination. I too don't like the thought of taking pain meds for the long term. I'm still struggling with this diagnosis..working through the emotions, and like you said, trying to find that inner peace.

Take care,
Genn

[leelee88]

It is fine to vent!! And do try to stay positive. While things might seem glim right now they can get better once you learn how to control your symptoms. And remember even after you start meds the ones you are on might not help. So you might have to try several before you find the ones that work the best for you..But you can get your IC under control or at least better.. Hang in there and please do not give up.. Keep fighting and trying to find ways to make you life better with this disease.

My suggestions:

Diet with IC safe foods.
Keep hydrated with IC safe fluids.
Listen to your Body, when you are tired then try to rest, When you are stressed try to relax!
If you start hurting take your pain meds BEFORE it gets to bad..
A heating pad works great when you are in pain.
Prelief Pills if you think you are eating something Iffy or your bladder is burning. You can buy these on the ICN shop.
Pyridium, Urelle, Prosed DS these meds change your urine color but help with bladder spasms..

I hope you start feeling better about all this and remember this can get better.. You just have to take control and not let it beat you down..(((hugs)))

[BT2008]

Hey Jen,

Welcome to the one and only place that IC sufferers can come--where most everyone understands what you are going through!

Leelee provides the best summary advice for dealing with this awful disease. I would only like to add the following (it is quite lengthy, but I hope it will be helpful):

I was diagnosed on 9/11/08, after suffering unrelenting pelvic pain for nearly 3 months. During the cysto/hydro, the urol found the open, bleeding lesions typical of IC.

At the time, the pain was so overwhelming, I couldn't make sense of anything for quite awhile. But, when I began to keep a very detailed daily journal, I was able to isolate several different kinds of pain. This has helped me better understand what is going on with my version of IC. For example, I have four distinct kinds of pain, each with a level of severity all their own.

1) Constant pelvic pain, like a very bad menstrual period. This is ongoing, day and night, no matter what else is going on. It can vary from moderately painful to curled up into the fetal position severe. This, I have come to understand is the pain felt when my urine comes in contact with the open lesions in my bladder. This can be controlled somewhat with diet (no acidic foods or liquids and LOTS of filtered water). Plus, my heating pad has become my constant companion! This type of pain is best described as continuously pouring lemon juice on a paper cut or other open wound.

2) When I go to the bathroom to pee, there is another distinct type of pain that I have come to understand is the result of bladder spasms. This pain can be so intense it can easily bring tears to my eyes. I have learned that there is a muscular mechanism involved between the bladder and the pelvic floor. When we pee, the bladder muscles must contract in order for urination to occur. At the same time, the pelvic floor muscles must relax. When this type of pain is occurring, I have learned that my pelvic floor muscles are contracting, which prohibits my bladder from being able to contract so I can pee. I have to work hard at being aware of this muscular mechanism, and try to relax my pelvic floor so my bladder can contract. Oftentimes, I have to turn the water in the tub/sink on which triggers my bladder to contract. I am also taking an anti-spasmodic (Bentyl) which really helps a lot.

3) The next kind of pain is the most severe. After I pee, within a few seconds or a few minutes, the pain can spike to an unbearable level. I have learned that this is the result of my bladder collapsing in on itself, and the wounds in my bladder bump and grind together. This can be likened to rubbing two or more open wounds together--and the pain can be incapacitating. I describe this as feeling like ground up glass is churning around in my bladder. As with the healing of any wound, without isolation from the cause of the wound, the wound cannot heal. As such, these wounds in the bladder are constantly being irritated and are never given the chance to heal. I do not know of anything that can be done for this kind of pain except taking the narcotics (and using the heating pad). The Elmiron is supposed to eventually help with this problem by "filling in" the wounds in the bladder (perhaps like pouring concrete into cracks in a sidewalk??). I have been on Elmiron for over 2 1/2 months with no relief yet. But, they say it may take up to six months to work. I hold out hope that it eventually will.

4) The fourth type of pain is pelvic floor pain. This type of pain is not a daily problem for me like the other three types of pain. It occurs most often whenever I have a really, really bad flare of all of the other three combined, or whenever I have an IBS (spastic colon) attack (which is too painful for words!). My pelvic floor pain can be debilitating in its own right, which just adds to the already unbearable pain of the other three. When this is happening, it is like all four types of pain are competing for which one can hurt the worst! This sounds crazy, I know, but that is what it feels like. I do not know of anything that helps this either, except time. For me, this type of pain only goes away when everything else calms down. More often than not, relief only occurs after I have struggled with all the pain to the point that I fall into an exhausted sleep. I do not think that my case of this type of pain is the Vulvodynia that some of the sufferers on this forum experience (thank goodness!! I don't know if I could handle that on top of everything else!) I assume mine is PFD, or Pelvic Floor Disorder. If you cannot sit down for very long, you may have Vulvodynia as well.

I know that this has been a long post, but understanding the different types of pain has really helped me better understand the complexity of my IC, as well as providing the added benefit of making communication with my urologist a lot easier. He has a summarized copy of my journals, so when I speak of the different kinds of pain, he can better understand what I am talking about (instead of just hearing me babble incoherently )

Please know that when we advise you to "hang in there" we are giving you the same advice that we must give ourselves on a daily basis. I trust that Leelee and all the other helpful people on this forum are right, in that one day my IC will be under better control. It is a daily struggle that they obviously understand, and I do find it a great emotional help to read their words of encouragement. Maybe one day I will speak with their voice, and be able to say that my IC is under control. Until then, however, know that you are NOT alone; I, and many others, are also right in the middle of this very traumatic situation, and living through all the many ways that this disease adversely affects our lives.

May we all find comfort wherever we can! And yes, Namasté as well...

~Beth

[elamar]

these two meds might help with some of your pain issues. They are antispasmodics but also sanitize the urine which can help prevent uti's. You might want to ask about low dose valium to help relax the pelvic muscles. I take 2 mg twice daily. They don't make me sleepy at such a low dose. To be honest, I'm not sure it is doing anything but I keep trying! Just doing long deep breathing and trying to relax when I can sometimes helps. Non of my doctors have ever allowed me narcotic pain relievers. Ultram/ultracet helps but never fully gets rid of the pain. Cystoprotek seems to help - that might help with healing your bladder lining along with the Elmiron. My doctor also said she had several patients heal with just fish oil capsules alone - 2000 mg per day. I have been taking them for months, but haven't really had any change in symptom, but they are supposed to be good for inflammation in general. I also take flax oil seed capsules, again for inflammation. Finally getting on a good probiotic can help your insides along with IBS. Hope this helps a bit. Good luck to you.

[pj77]

In the beginning it is so frustrating to have a few better days and then go back to bad, I went throught this so many times. It is very normal , and all of us with IC understand. Do stay positive-it is so hard, but stress is no good.

With IC everything is slow, but so so many of us find the right combination of things and get our IC under control and lead very normal lives.

It is so so hard those first several months. I think the first 4-6 mos are the worst. Waiting to get diagnosed, tests, waiting for appointments and tests, the actual diagnosis, waiting and trying medications, waiting for medications to work. Take your pain meds and don't worry about having to be on them for awhile right now, that is what they are for-pain. I rarely have to take them now.

The diet also did not work for me right away, I was too flared up, and took me months to settle down with other meds before I was able to tell the diet even helped me and what foods flared me etc. I'd say it took me 6 months before the diet stuff started to get figured out. Don't worry about trying to figure that all out either. Just stay away from all the major flare stuff like coffee, pop, tea, tomato, spicy and citrus and try more bland stuff, more fresh stuff.

Good luck and you are on the road to figuring this out, at your next appointment talk to your doctor about all the different meds you can start trying, a lot of them are already listed in this post, and all the self-help things you can do, like the diet and resting, heating pad, etc.

[jwakethe2nd]

Hello All!
I am extremely new to this. I was diagnosed last Monday after struggling since early September. I have a lot I would like to discuss, but mostly I am having extreme nausea and a metallic taste in my mouth.....I'm thinking it may be from the elmiron? Has anyone experienced this? I've only been on the elmiron for a week now.
I'm happy to have found this site......you all seem very supportive and knowledgable. I hope I can find support here and provide it to others as well.

[chasingbliss]

Hi everyone! I hope your holiday was a good one! Thanks to you all for such wonderful words of encouragement. I was finally able to read them all tonight (we've been having DSL issues).

I share the sentiment of several in feeling so grateful and lucky to have found this community. I am acutely aware of how isolated this illness can make you feel and it is very comforting to be able to visit here and find solace in the words of fellow IC travelers.

I am doing a bit better than I was 2 weeks ago. My visit last week to the urologist went very well and now I am trying to adjust to the new medication - elmiron, elavil and prosed. I am holding off on instillations for now as the mere thought of a catheter sends me screaming for the hills. My next appt is 12/24 and I promised my doctor I would submit to them if my symptoms hadn't improved.

Slowly but surely I am learning to live with this disease. I am trying to see the light at the end of the tunnel and remain hopeful that I too will feel better in a few months. I can tell you my priorities have definitely shifted since this journey began and I move quite a bit slower though life. But that may not be a bad thing considering the frenetic pace at which I existed prior to my diagnosis. There's always a silver lining, right?

Have a great week y'all!

[Briza]

The diet also did not work for me right away, I was too flared up, and took me months to settle down with other meds before I was able to tell the diet even helped me and what foods flared me etc. I'd say it took me 6 months before the diet stuff started to get figured out. Don't worry about trying to figure that all out either. Just stay away from all the major flare stuff like coffee, pop, tea, tomato, spicy and citrus and try more bland stuff, more fresh stuff.

I agree 100% w/ everything that PJ posted; however, I think this part is particularly most important for new patients as they try figure out their food triggers, especially if you are dealing with round the clock pain/burning.

It was the same for me as PJ, I was so in so much pain it didn't matter what I ate, I hurt. It really wasn't until I got my symptoms somewhat under control with meds, including pain meds, that I was able to determine my food triggers. But even if you can't feel what is hurting you or not, sticking to the diet is very important esp in the beginning so as to give your poor insulted bladder a break from whatever IS or has been irritating it. And that will help it to heal a bit and make whatever meds you are taking work all the more better! For many of us, our meds are pointless if we don't avoid our food triggers, or at minimum make us require more meds and doses of our meds than we would need if we avoided our food triggers in the first place. And usually for most patients, the diet is not that restricted as it is at first glance once symtpoms are under control and you know your food and bev triggers. It does take time to figure it all out, but well worth the effort in the long run.

So if nothing else, stay away from the classic and most common triggers like PJ listed and like those noted in the IC diet section here on ICN, and believe me, your bladder will thank you for it, even if you do not feel the results for months.
Best wishes to all, Bri

[Briza]

Hey Jen,

Welcome to the one and only place that IC sufferers can come--where most everyone understands what you are going through!

Leelee provides the best summary advice for dealing with this awful disease. I would only like to add the following (it is quite lengthy, but I hope it will be helpful):

I was diagnosed on 9/11/08, after suffering unrelenting pelvic pain for nearly 3 months. During the cysto/hydro, the urol found the open, bleeding lesions typical of IC.

At the time, the pain was so overwhelming, I couldn't make sense of anything for quite awhile. But, when I began to keep a very detailed daily journal, I was able to isolate several different kinds of pain. This has helped me better understand what is going on with my version of IC. For example, I have four distinct kinds of pain, each with a level of severity all their own.

1) Constant pelvic pain, like a very bad menstrual period. This is ongoing, day and night, no matter what else is going on. It can vary from moderately painful to curled up into the fetal position severe. This, I have come to understand is the pain felt when my urine comes in contact with the open lesions in my bladder. This can be controlled somewhat with diet (no acidic foods or liquids and LOTS of filtered water). Plus, my heating pad has become my constant companion! This type of pain is best described as continuously pouring lemon juice on a paper cut or other open wound.

2) When I go to the bathroom to pee, there is another distinct type of pain that I have come to understand is the result of bladder spasms. This pain can be so intense it can easily bring tears to my eyes. I have learned that there is a muscular mechanism involved between the bladder and the pelvic floor. When we pee, the bladder muscles must contract in order for urination to occur. At the same time, the pelvic floor muscles must relax. When this type of pain is occurring, I have learned that my pelvic floor muscles are contracting, which prohibits my bladder from being able to contract so I can pee. I have to work hard at being aware of this muscular mechanism, and try to relax my pelvic floor so my bladder can contract. Oftentimes, I have to turn the water in the tub/sink on which triggers my bladder to contract. I am also taking an anti-spasmodic (Bentyl) which really helps a lot.

3) The next kind of pain is the most severe. After I pee, within a few seconds or a few minutes, the pain can spike to an unbearable level. I have learned that this is the result of my bladder collapsing in on itself, and the wounds in my bladder bump and grind together. This can be likened to rubbing two or more open wounds together--and the pain can be incapacitating. I describe this as feeling like ground up glass is churning around in my bladder. As with the healing of any wound, without isolation from the cause of the wound, the wound cannot heal. As such, these wounds in the bladder are constantly being irritated and are never given the chance to heal. I do not know of anything that can be done for this kind of pain except taking the narcotics (and using the heating pad). The Elmiron is supposed to eventually help with this problem by "filling in" the wounds in the bladder (perhaps like pouring concrete into cracks in a sidewalk??). I have been on Elmiron for over 2 1/2 months with no relief yet. But, they say it may take up to six months to work. I hold out hope that it eventually will.

4) The fourth type of pain is pelvic floor pain. This type of pain is not a daily problem for me like the other three types of pain. It occurs most often whenever I have a really, really bad flare of all of the other three combined, or whenever I have an IBS (spastic colon) attack (which is too painful for words!). My pelvic floor pain can be debilitating in its own right, which just adds to the already unbearable pain of the other three. When this is happening, it is like all four types of pain are competing for which one can hurt the worst! This sounds crazy, I know, but that is what it feels like. I do not know of anything that helps this either, except time. For me, this type of pain only goes away when everything else calms down. More often than not, relief only occurs after I have struggled with all the pain to the point that I fall into an exhausted sleep. I do not think that my case of this type of pain is the Vulvodynia that some of the sufferers on this forum experience (thank goodness!! I don't know if I could handle that on top of everything else!) I assume mine is PFD, or Pelvic Floor Disorder. If you cannot sit down for very long, you may have Vulvodynia as well.

I know that this has been a long post, but understanding the different types of pain has really helped me better understand the complexity of my IC, as well as providing the added benefit of making communication with my urologist a lot easier. He has a summarized copy of my journals, so when I speak of the different kinds of pain, he can better understand what I am talking about (instead of just hearing me babble incoherently )

Please know that when we advise you to "hang in there" we are giving you the same advice that we must give ourselves on a daily basis. I trust that Leelee and all the other helpful people on this forum are right, in that one day my IC will be under better control. It is a daily struggle that they obviously understand, and I do find it a great emotional help to read their words of encouragement. Maybe one day I will speak with their voice, and be able to say that my IC is under control. Until then, however, know that you are NOT alone; I, and many others, are also right in the middle of this very traumatic situation, and living through all the many ways that this disease adversely affects our lives.

May we all find comfort wherever we can! And yes, Namasté as well...

~Beth

Excellent post, Beth. It took me longer than you to figure out exactly what symptom and condition (i have IC, VV, Vulvodynia, PFD) was causing each type of symptom and which med to take for each...but once I did learn how to differentiate all my various conditions and symptoms and the med to take to relieve each symptom, my intake of meds was drastically reduced and unless in full on flare from ALL conditions and all symptoms at once, I rarely have to take all of my meds at the same time anymore. Your post shows very clearly how important it is to really listen to our bodies and pay attention to how and when each of our meds helps us. Nice post. Best wishes, Bri