In Desperate Need of Support, Help, or Understanding

[syrabeth]

Hi, I am a a college senior and I've been in almost constant pain for 6 months. I used to be a generally happy person but the pain has slowly worn down my smile and made my personality vacant. Between UTIs and vaginal infections, and IBS symptoms, I have lost most of my friends. I feel like I have no one to talk to about what I'm going through.
Up until a few days ago I believed that I would get better, the infections would go away and I would have a normal life. But my last doctor (of over 15 that I've been to) said that I probably have IC. The light at the end of the tunnel disappeared. I've lost hope that I will ever get better and live a normal life. I'm taking vicodin every day, waiting to get into another urologist appointment where they will finally do some diagnostic exams (that are just as scary as the pending diagnosis). Even the exams leave me feeling violated and the doctors are constantly mean with little to no understanding.
I am alone and hopeless, watching my dreams fade. I might have to drop out during my final semester. Then I wouldn't be able to have my July wedding...
If anyone would be willing to help me know what to expect and lend me some support it would help a lot.
thank you,
Sarah

[lisabar36]

Hi Sarah, I am so sorry your feeling this way. I was diagnosed in 1999, and I remember the same feelings. I also have IBS. I know it can be very depressing, but there are so many treatments out there to help with your symptoms and make you feel better. I hope you can find a good urologist and once you get diagnosed, you can start some treatments. Please remember there is hope! We are all here for you, this is a great support group and there is alot of information. Have you looked at the IC diet yet? That would be a good start. I know with me alot of foods cause me a great deal of pain. I follow the diet and that alone makes me feel better. I came a long way with my IC. I was feeling very hopeless for a long time. Hang in there. :)

[Goldfinch]

Hi Sarah, I'm so sorry you are suffering, but I'm glad you are finally getting to a urologist and I'm glad you found this site. If the doctor who suggested you have IC led you to believe there's no light at the end of tunnel he/she should be rapped on the knuckles or worse, because that's exactly wrong. And don't freak out about diagnostic tests. IC is a diagnosis of exclusion; many of the tests that rule out other diseases are not terribly invasive or painful. One step at a time and you will sort this out and find out what's going on and how to treat it. I take it you have just discovered this site and don't yet have a lot of information about IC or related diseases. So start reading! (Like you probably don't have enough reading to do already in school.)

You don't describe what type of pain you are having, but it's clear that the first thing you need is some quick relief. If your symptoms are like a UTI, with frequency, urgency, burning or stinging and seem mostly bladder related, there is one med that works very quickly that you can get over-the-counter, called Azo or uristat. It works primarily as a bladder anaesthetic and it works fast--like within hours. Then there are urinary tract antiseptics that also work pretty fast, and they are by prescription only. If you have to wait to see a uro, perhaps your primary will give you a script for one of them. Read about these drugs in the forum "Treatments for Mild IC."

If your doctor didn't mention this, you should know that diet is very important in treating IC and other bladder related conditions. Even if you don't have IC, if your bladder is irritated, eating a bland low-acid diet can calm it down. If you are drinking or eating any of the following, the best thing you can do is to quit them cold turkey asap: Coffee and non-herbal teas, soda, alcohol, cranberry juice and all other acidic juices, all citrus fruits and things with vinegar, tomatoes, hot spicy foods and soy sauce. It may not make you feel better right away, but stick to it, and within 2 to 4 weeks you should see some improvement, maybe a lot. And drink plenty of water; if your bladder is unhappy you want your urine to be diluted.

I'm sure others will chime in here. Take care and DON'T get discouraged. Everyone gets low when they first learn about IC, but now is when you start to get some answers and some help.

[KarenAnne]

Hi Sarah! If your friends have abandoned you because you are ill, then they were not very good friends to begin with. I learned on this site about the IC diet. Definetly give up the acidic, spicey, caffeine, pizza, just like "Goldfinch" said. And th AZO over the counter will help too.

It sounds like you could use some talk therapy. Does your college have a counselor you could talk to? Don't drop out of school just yet-you are almost there. Hang in there & write to us. We will get you through this. Get inw/ the urologist asap.
Best wishes, Karen

[dyno]

Hi Sarah and :welcome: to the ICN. I know you are scared and hurting. We have all been there. You have been given good advise so far. In my signature line you will find a link to the Handbook, a wealth of information there.

Also as far as the water goes, yes drink plenty of water but make sure it is not too acid. Not all water is created equal, I have found this out the hard way, or should I say painful way. Bottled spring water is usually a safe bet.

I also say don't drop out of school, you have one semester to go and like was suggested before maybe talk to a counsler to see what you can do to help you get through this last semester.

We are all here for you and will help you in any way we can along the way. Hang in there!!!

[Goldfinch]

Hi It sounds like you could use some talk therapy. Does your college have a counselor you could talk to? Don't drop out of school just yet-you are almost there. Hang in there & write to us. We will get you through this. Get inw/ the urologist asap.
Best wishes, Karen

Sarah, your health center might also be a good resource for locating a uro, especially if you are in a school that's not close to home. My daughter is in college in a pretty small town, and when she needed some expert help she discovered that her campus health center is run by a wonderful woman who has very good contacts off campus.

[ellenjb]

Oh my gosh, I am so sorry you are dealing with this at a young age, and I can completely sympathize. My IC developed when I had not even two semesters left of law school, and i never thought I could make it through it, but I did. I met with the Dean to explain what I was going through, and brought documentation from my doc (even though I was not yet diagnosed with IC, I had documentation that I had ongoing problems, pain, urgency, etc). What really helped me was to study in a hot bath...it sounds ridiculous, but it allowed me to take the focus off of my bladder, and put it onto my studies. Just make sure you add Aveeno oatmeal bath stuff (as long as you dont have an allergy to oatmeal) b/c it keeps your skin hydrated. I'm not kidding if i had to, I sometimes stayed in the tub for a two hour period. You can do it....just hang in there, and realize that you have a great chance of getting SO much better with the right diet and treatment plan. Also, look on this site for IC docs in your area....the right doctor can make all the difference. Take care and try to keep your head up during this difficult time.

[syrabeth]

Thanks for the support so far!

It helps. My dad isn't a wealth of sympathy, his exact words were, "at least you don't have cancer" and my mom is trying to help (she goes to all my dr appointments with me now) but she still things that if I would "just come home" everything would get better... it's good to have some outside opinions that are somewhere in between.

I did try the health center for the physical and mental side. Unfortunately, it wasn't that great... actually left me more upset. Just opened up the wounds and didn't help me heal them.

I am allergic to caffeine so soda, tea, and coffee aren't an issue but i love fruit and eat a lot of it. I quit that as soon as I learned that it might be an issue!

About the pain, my symptoms are odd. I experience a burning that might be in my urethra (?) about a minute after I urinate. Then it lasts for about 30 to 40 minutes. I try to pee three times a day to limit the pain. In addition, urination makes me dizzy and causes strange mood swings. I have constant bloating (hard swelling) of my lower abdomen and walk like an old lady from muscle and back pain. The constipation is finally going away but I'm so afraid that it will start again. I was given muscle relaxers for my bladder and they alleviated the extreme pain but I haven't really had any urgency or frequency!

It's all confusing. I met with what is now my third urologist. He walked out on me because I questioned him and he didn't know the answers. After that I was told that I shouldn't read up so much because then I don't "believe the dr's". He sent me over to his colleague. He is an IC specialist and an old man. I just finished my Kidney and bladder sonogram (?) to go with the vaginal and ovaries. Now they want to do ( I believe) a cystoscop with a biopsy of the bladder wall. I'm scared and embarrassed to be revealed that way. Also, I can't imagine going through all that pain and then being told that they still don't know what's wrong.

I can get rid of the pain with vicodin.. but that isn't exactly the best habit to pick up either. I just want to be myself again!
- Sarah

I

[syrabeth]

I just wanted to emphasize, thank you thank you thank you!:pray:

and I'm from PA aswell, coincidence or conspiracy?! haha

[dyno]

Sarah I had a Dr. walk out on me because he couldn't answer a question I would be looking for another Dr. and anyone who tells you not to educate yourself is wrong.

Especially with IC you have to become your own advocate. You have to understand the treatments and tests and if you have to go to more Drs. to find answers, do it.

If you are dealing with IC, remember most of us do find treatmenst that work for us. So you just keep reading and educating yourself, asking questions and most of all stand up for you and your right to good medical care!

[bluetart]

Hi sarah i am so sorry your in so much pain. Ic came one part way through college it was very scary and I though I was going to have to drop out. I didn't know what was wrong I was in pain and I was dealing with a whole bunch of old men uros that thought i was just a moody girl. I eventually got some releif with treatments and didn't drop out and will be graduating on time. If you have to drop a class to lighten the load and take it in the summer or finish your thesis in the summer to take the stress off. Do what feels right about the school situation and what you can handle.

I have a few more suggestions if they havn't already been mentioned. Sleep, naps, power naps ect. School is stessfull and stress will set off your symptoms, sleep gives the ability to handle stress. A Heating pad or an electic blanket for you tummey and maybe something over the counter with an anti-histamine in it to settle the inflamed bladder. Also carfule with what you eat not just IC wise but IBS wise. Keep your self regular with fiber. If I am having IBS sympotoms than it will set off bladder pain.

I hope any of this helps and that you can find a decent doctor to get you a treatment plan and discuss everyone suggestions.

[lisabar36]

Hi Sarah. So your from Pa? I live in Montgomery county, I do know some really good IC docs, so if you need any suggestions please let me know. I remember before I was diagnosed, I was very frustrated, I always thought I had a UTI, and a yeast infection. I never felt good, I had pain for years before they found the IC. I had a bunch of tests that were normal, and it wasn't until they looked at my bladder, they found the IC.
I do also get the burning in my urethra sometimes, especially if I eat something I shouldn't have. However I have done so much better on treatments then ever before. There are alot of meds out there to help with symptoms, and to help you feel better. When do you see the uro? Hang in there.

[lisabar36]

also, I wanted to mention, I suffer with back pain, my Physical therapist said it has to do with the pelvic muscles and how they are all connected and she is really working with me in therapy, at first it was very painful because my muscles are not used to being manipulated, but each time I go it helps me more and more. I had MRI's on my back to rule out other things first, which I am not sure if you had? But therapy really does help me alot also. :)

[elamar]

I found the med utira-c to be a life saver for me. There are a class of anti-spasmodics that can help with the pain and urgency. My urgency and frequency were so bad, they in themselves were a source of pain. There is urelle, prosed, utira-c (these turn your urine blue and are safer for long term usage - you can usually use up to 4 per day or as needed), then there is pydrium which is the one that turns your urine orange. Sometimes doctors will prescribe that if you have a uti. It is only meant for short term usage. There is a lower dose version over the counter called AZO. Your doctor may have free samples of the urelle or prosed. There is also levsin which is an ingredient found in some of those mentioned above, it has no dyes in it. Ditropan xl was also an excellent help to me. I used to have to take both ditropan and utira-c together to get my spasms under control. I wouldn't recommend that unless you have around the clock urgency like I did. I hope this helps. There is also now tramadol er that is a helpful pain reliever. You still need a doctor's prescription but it is non narcotic. I usually just had the tramadol which I thought worked fine. It didn't get rid of my pain all the way, but I could function on it pretty well. It didn't make me sleepy or loopy. My doctor now gave me tramadol er (extended release) thinking it would be better. I honestly don't feel like it is helping me. I don't know what they did to change the formula, but I liked the regular version better. I hope this helps. Good luck to you.