Feeling really sad...

[psj]

Hi,

I am 22 years old and in my final year of university. I was diagnosed with IC last summer with symptoms of frequency and urgency. I have been on Elmiron every since, trying to eat a strict IC diet, doing my best to exercise and reduce stress, BUT I am struggling so much... especially with the anxiety related to IC (driving, public transport, sitting in class and my greatest fear: two upcoming presentations I have to give).

In January I did three weeks (3 x a week) of instillations of medications (Heparin, Lidocaine and Sodium Bicarbonate). I then had a three week break to see whether it was helping. The first two weeks of the break I think my IC symptoms were reduced, but then the last week or so, it's gone back to what it was before.

I saw my urologist this morning to discuss where to go from here. He said I had two options: 1) continue with instillations (1 x week) or 2) surgery (cystoscopy hydrodistension - which might reduce my symptoms for 2 months, but emphasized that there are risks to this procedure). He asked me to make a decision right away, which I couldn't. I told him I'll think about it. As he was about to leave the room, I told him that I can handle the physical aspects of disease, but that the mental aspect of living with IC is really taking a toll on my (I was crying at this point). He then told me to take a low dose of Elavil and referred me to a pain psychiatrist at the hospital.

I am so confused, sad, and frustrated.... I feel like I have tried to be really proactive (IC diet, stretching exercises, acupuncture, think positive, seen a school psychologist for coping strategies, kept and IC diary, quit my part-time job to reduce stress...), but it is still not enough...

Has anyone taking Elavil? What are it's side effects? Will it help reduce anxiety?
Has anyone tried cystoscopy hydrodistension as treatment? How many times can one do this treatment safely?
Has anyone tried bladder instillations over a longer period of time? Benefits?

But most importantly,
How do you all manage the anxiety that is related to IC?

Would really appreciate some help and support. I am having my lowest IC day today...

thanks.

[ICNDonna]

I'll make this fairly short --- I have a sinus infection and will be heading for bed very soon. I'll try to answer your questions.

Has anyone taking Elavil? What are it's side effects? Will it help reduce anxiety?

Many ICers take a low dose of elavil to help with symptoms. I couldn't take it because it made me extremely hyperactive (fairly rare side effect).

Has anyone tried cystoscopy hydrodistension as treatment? How many times can one do this treatment safely?

Hydrodistention has been a major treatment for me since my diagnosis in 1975. I have now had 42 hydros at intervals of anywhere from six months to just under two years. I had my most recent hydro in May 2008. I have read that this helps about 50% of IC patients.

Has anyone tried bladder instillations over a longer period of time? Benefits?

I have had many different kinds of bladder instillations. They, along with hydros, have helped keep my symptoms under control.

I think the diet was my biggest challenge, but once I became accustomed to it, it isn't bad --- and it's one of the things that has allowed me to live a normal, active life in spite of having IC.

Donna

[bluetart]

Oh no I am sorry that things are not going well. There are alot more options that your doctor forgot to mention. There are many differenty medications and different instilations to try. Also physical theropy options to help get rid of pelvic floor disfunction. I had the hydro cysto, in the long run it relieved my symptoms but it was extreemly painful for me for the first three weeks afterwords. I wouldn't do it again but I am glad I did to get my dx. There is also bladder training. Yoga (soothes the soul). If your period agrivates your IC you could try a birth control where you ony have you period 4-1 times a year. There are alot of options out there. that are less invasive. Than there are more invasive ones such as the interstim implant that should be tried after all other options and combinations fail. If that is all your doctor as to give than he might not be keeping up to date.

[Tinkerbell23]

Hi,

I am 22 years old and in my final year of university. I was diagnosed with IC last summer with symptoms of frequency and urgency. I have been on Elmiron every since, trying to eat a strict IC diet, doing my best to exercise and reduce stress, BUT I am struggling so much... especially with the anxiety related to IC (driving, public transport, sitting in class and my greatest fear: two upcoming presentations I have to give).

In January I did three weeks (3 x a week) of instillations of medications (Heparin, Lidocaine and Sodium Bicarbonate). I then had a three week break to see whether it was helping. The first two weeks of the break I think my IC symptoms were reduced, but then the last week or so, it's gone back to what it was before.

I saw my urologist this morning to discuss where to go from here. He said I had two options: 1) continue with instillations (1 x week) or 2) surgery (cystoscopy hydrodistension - which might reduce my symptoms for 2 months, but emphasized that there are risks to this procedure). He asked me to make a decision right away, which I couldn't. I told him I'll think about it. As he was about to leave the room, I told him that I can handle the physical aspects of disease, but that the mental aspect of living with IC is really taking a toll on my (I was crying at this point). He then told me to take a low dose of Elavil and referred me to a pain psychiatrist at the hospital.

I am so confused, sad, and frustrated.... I feel like I have tried to be really proactive (IC diet, stretching exercises, acupuncture, think positive, seen a school psychologist for coping strategies, kept and IC diary, quit my part-time job to reduce stress...), but it is still not enough...

Has anyone taking Elavil? What are it's side effects? Will it help reduce anxiety?
Has anyone tried cystoscopy hydrodistension as treatment? How many times can one do this treatment safely?
Has anyone tried bladder instillations over a longer period of time? Benefits?

But most importantly,
How do you all manage the anxiety that is related to IC?

Would really appreciate some help and support. I am having my lowest IC day today...

thanks.

hi,

sorry to hear you're not doing well, but you have come to the right place. i tried elavil but i had a bad experience w/ it, i was on it for pain relief though. it made me very depressed and tired, but i know others who swear by it. i have had 2 cystos but not for relief only to see my bladder, the hydro i have had for relief. the first one did not work at all and the second lasted 3 weeks, but it was the greatest 3 weeks of my life. i know people who have had many hydros done, my dr only allows patients to have a few especially if you are young, she says the more you do it, the less it works. i do not know if that is the case though. i can only go by my dr. i am doing the instills now, for about 3 months. it took awhile for me to see relief but now i think its helped the best so far w/ my pain. i get heparin, liocaine, an antibiotic and something else that numbs...at first it gave me "rebound pain" but after a few weeks that stopped. i go once every other week and am learning to do it myself. the way i manage my anxiety is by planning ahead if i travel, having a great relationship with my dr, taking time for myself to relax, doing yoga, but most other exercises cause a flare for me, speaking to people in my life that understand and are good at listening and most of all the ic network has saved my sanity. i used to take xanax for anxiety, but that was before ic. i dont take it anymore, but i take valium to relax my pelvic floor muscles so i am sure that helps as well. do you have pain as well? i find that heating pads help my pain and that helps me de-stress. you need to do what YOU are comfortable with though. if you arent sure about something ask a ton of questions and if you still arent then maybe you shouldnt do it just yet. stay educated on everything and give yourself as much time as you need to make your choices, your dr should be more understanding. therapy can also help you as well. good luck with everything.

[Goldfinch]

I'm so awfully sorry you are having such a tough time right now. Not that it's much comfort, but you are in very good company this week. I'm utterly astounded at how many people in their late teens and very early 20's are posting for the first time here in the last few days.

It sounds like your primary symptoms are frequency and urgency. Do you have burning? Are your symptoms bladder-specific? What kind of pain do you have? The drugs most often prescribed for IC are Elmiron, Elavil and Atarax, an antihistamine. In conjunction with diet, these drugs are often taken in some combination of two or even all three together. Finding out what works for you is a customized affair of trial and error; don't get discouraged--it usually takes a while to find the best treatment.

Although Elavil is an antidepressant, it is used in the treatment of IC because it interferes with nerve pain and also has some other qualities useful for IC. Talking to a psychiatrist is a good idea; there are lots of anti-anxiety meds out there that can be taken in addition to Elavil.

I see you are on Elmiron, and you probably know it can take 6 months to a year to start working--it's different for everyone. If you are on the standard starting dose of 300mg per day you could ask your uro about upping it a little. Some people do try a higher dose. If your symptoms are mainly UTI-like there are drugs called urinary tract antiseptics that have very few side-effects and can bring some quick relief, possibly while you are waiting to see if the Elmiron will kick in. I know it's overwhelming. Hang in there!

[vm]

I took Elavil for a few years along with some other IC meds. I found that, in the beginning, I really needed a combination of medications to find relief. No single medication, back then, gave me full relief. NOW I just take Elmiron, but for the first few years I needed more than that. (You can read my story for more information if you'd like...) You might ask your doctor about adding some other oral meds to your treatment, too.

Hang in there, OK? Most of us do eventually find what works, but getting there sure can be hard. :(

[lisabar36]

Hi, I take Elavil in a low dose, I started at 10mg until my body got used to it, always took it at bedtime, then I went to 25mg. I was one who never had any side effects at all from it, except when I first started it did make me a little sleepy, and I had a dry mouth, but that went away shortly after, maybe a few weeks, once I got used to it. I am now back on 10mg, and it really does help me alot, even at that low dose.
I also have had bladder instills, and they also helped me a great deal with frequency. They had to use a pediatric cath on me anything bigger was to painful for me and did not help.
I have had hydros in the past, the first 1 seemed to help alot, the 2nd one they used dmso and I didn't respond to well, and this last one they did just to distend my bladder, seemed like after I could go a little longer without having to urinate and my bladder would hold more, but it didn't last very long, but we are all so different in what works. I have also had a huge amount of stress which could be why the last hydro didn't seem to last longer. Stress can be a big trigger for IC. There is also Atarax that is an antihistamine for IC, and that really helps me with the anxiety part, helps me to sleep better, and also helps my IC. These are some things you can discuss with your doctor. Hang in there and hope you find something that works for you soon.

[SandyRN]

Hi,

I'm so sorry you are going through so much. IC can be a lot to handle. You've been handed a disease that basically has no cure (YET) but the symptoms can be managed. It just takes some trial and error to find the combination of things that works best for you.

I've not taken Elavil, but I have done instillations. They do seem to have helped you, right? I did the same meds in mine, the lidocaine, sodium bicarb and heparin. I only had one done in the doctor's office, then I started doing them at home. You might ask if this is an option for you. It's not that hard to do once you get used to it and you understand how to do it. Your doctor and his nurse should be able to show you how. It's great to do them at home because you can do them when you feel you need them and you don't have to go to the dr's office to have them done.

I hope you feel better soon. It does get better with time. Knowledge is power, so continue to learn all you can about IC. You've come to the right place for that!

Take care, Sandy

[psj]

Thanks for all the answers and support!! Really helpful.

I have another appointment with my urologist tomorrow morning, and I think I have decided to wait with the cystoscopy hydrodistension (my Dad is allergic to general anesthesia, so I feel it might be a bit risky, also it's just short term relief) and rather continue with the instillations (once a week probably).

I just talked to a disability specialist at my university today to try and get accommodation for some upcoming presentations I have to give in class and perhaps postpone the assignments of one of my courses. I feel like I need to free up some time to focus on healing and especially reducing my IC-related anxiety... It's so hard to explain to people (e.g. professors) over and over again what it's like to live with IC.

I really hope my IC improves... and all of yours!!

[mzyne]

I would have a serious think about getting the Cystoscopy with Hydrodistention. I am only 24 and have had IC for 4 years now. I have only been treated for 2 years. I can't imagine how horrible it must be to go to uni with it!

I had my first two days ago. After reading various comments from the forums I got very nervous and stressed about having the procedure. I am like you and I get very nervous, anxious and stressed on a daily basis about IC. I was scared (total understatement) about having a huge amount of pain and I thought that my IC flares would be worse after the operation.

I was very pleased and surprised after the procedure. I was in no pain at all! The only thing that worried me was the drip and that is only from a fear of needles! To go to the bathroom after the operation was slightly painfull, but nowhere near as much as it hurts when I have a flare... it just feels like you have a slight scratch...

I was in hospital for around 7 hours. The procedure took all of half an hour until I was awake in recovery. They took my blood pressure various times and I had a quick bite to eat, then I was free to leave. I spent the afternoon watching Will & Grace, Sex & The City on the couch with my mum and the next day I was back and work! (bugger! lol)

Maybe this is going to give me the pain relief that I need to get by for the next few months/years… However long it will last!

It is all about trying things to see if they work for you.

I know everyone is different, but don't over think yourself out of something that could really work for you!.

Best wishes from Australia! :hi:

[ICsmiles]

Hi psj,
I am so sorry you are going through this. But you are not alone.

My advice would be to concentrate on one thing at a time, one day at a time. I know that sounds trite, but it helps to just narrow things down to what you need to get done THAT DAY - especially getting through your presentations and other college work.

Take some deep breaths and realize that there is nothing you HAVE TO DO IMMEDIATELY in making decisions about your IC. You were already very wise in not letting your doctor pressure you into making a decision. On this journey of IC you will meet many doctors - some good, some not-so-good. Unfortunately many of us have learned the hard way that we cannot trust everything they advise us to do.

You are already doing the right thing by becoming knowledgeable about IC. Get the books that are recommended and keep researching - there is so much more information out there about IC, as well as other conditions that go along with IC. Do the least invasive things first and see if they help. Also learn about the other conditions such as PFD (Pelvic Floor Dysfunction), which means that your internal muscles are tight or in spasm and have trigger points that refer pain to your bladder) and PN (Pudendal Neuralgia) - which means that a major nerve in your pelvis is entrapped or inflamed and that can lead to similar symptoms as IC.

I wish I had known about physical therapy when I first got IC. When I did learn about it, it seemed weird that it could help inflammation inside an internal organ like the bladder. Anyway, finding out if it helps you will tell you a lot about your condition. You may be one of the lucky ones who benefit.

So - do not despair - there are so many things to try. My doctor recently told me there will be a cure for IC in my lifetime. She was referring to the research being done on the APF (anti-proliferative factor) which prevents the lining from re-growing in our bladders. The doctors who are working on that are Susan Keay MD and Toby Chai MD.

Diet is so obvious - but it took me a long time to become totally willing to give up some of my favorite foods. If you have a test or presentation try to be really careful in the days before it and do not eat or drink anything acidic.

Well, that's a lot for now.
It sounds like you are doing all the right things. Give yourself a pat on the back. And keep coming back here - you will always find someone who can help, or just listen. :smile tee