Very Depressed

[STYXYGIRL]

Hi, everybody. I was just diagnosed with IC last week. I've had very frequent uriination problems for the last twenty years or so and I'm 31 now. I went to the uro about ten years ago, but he did the cysto and filled my bladder with air and with water and it was so painful I never went back. At that time he said I had a very small bladder and something about the muscles that contracted to the bladder were hyperactive. I also suffer from endometriosis so I have to be on birth control because if not I get really bad pains and cycles. So I've been on the Elmiron for a week and detrol La. I was just married in November and hardly have any sex life because I'm constantly burning and itching and now have a constant pain in my back especially on the left side. For my job I have to travel at least an hour and I'm stuck on subways where I have to pee and there's no where to go. I just need to hear something good will come of this medication because I'm suffering and my husband is suffering from this and I don't know what to tell him about when I'm going to feel better. Well, thanks for listening to my story.

[VickiB]

Your first Uro visit sounds similar to mine! It was like entering a "Little Shop of Horrors" and I didn't go back to a Urologist for 26 years after that experience!

I'm sorry you're having to deal with IC. I can't imagine having to ride a subway for any length of time with no restroom access! IC makes so many things that others take for granted so much more difficult!

Hang in there with the Elmiron. For many of us, it really helped. Unfortunately, it often takes it's sweet time to kick in though!

Have you tried the IC diet? (It can be found in the handbook link at the top of the site page) That's probably the one best thing I did to get control over my symptoms!

Keep your faith up. Most of us do find a treatment that works, and go on to live pretty normal lives.

Hugs,

Vicki

[navemj]

Hang in there with the elmiron! It took up to one year for it to help me, but when I went off of it after being on it for five years my bad pain started all back up again! I know how it feels to go to a doctor and they misdiagnose you! I also suffer from endometriosis. I had laparoscopy two years ago and after I developed vulvodynia. It was terrible, but God has healed my VV. I am on continuous birthcontrol so I don't have a period. It is so hard to deal with IC and being married. My husband is very understanding though. He knows that there is no cure for IC. Maybe it would be a good idea to let your husband read some things on the internet about IC. He needs to understand that IC is very complicated. You can go in remission then it suddenly come back. Have you read some of the stuff on this site about sex and IC? I am one of the lucky ones where sex helps my pain sometimes. I have pelvic floor dysfunction so sometimes my pelvic muscles tighten up. When we have sex it helps loosen up everything. If I am in a flare with my bladder I cannot have sex though! But remind your husband that there are other ways you can please each other. It is so important that you really explain this disease to him. I told my husband before we married that I basicly had bladder ulcers and I will have it for the rest of my life. He really helps me watch my diet.
There are medications out there that will help with an overactive bladder. Have you tried any of these? Hope this info helps.
navemj

this is not medical advice just my personal experience

[ICNDonna]

There are many, many treatment options for IC. My suggestion is to read the information in the Patient Handbook (see link at the top of this page). I know some urological treatments can be painful, but a urologist is still the one who usually is more educated in the treatment of bladder diseases.

Elmiron can take six months or longer to become effective so you might want to consider some other alternatives in the meantime.

Sending healing thoughts,
Donna

[VickiB]

After making my earlier post I've been wishing I'd have said some things differently! So, forgive my double post on this one!

My first Uro visit was truly awful, and made me think twice about seeing a urologist again. But it was back around 1978! I'm not sure if they didn't understand I was already in a lot of pain? -Actually, I would bet that doctor had never heard of IC at that time. Perhaps the procedure they did on me would have been quite tolerable for any normal bladder. But as many of us know, an IC bladder doesn't play by the 'normal' rules!

Anyway, in 2004 things became so bad that I tried my second urologist. There was no comparison between the two. This urologist knew of IC, he understood I was tender, he believed I was in pain, and he caused me very little pain with examination. He told me that even though it was IC and incurable, there were plenty of things we could try. He siad he would see to it that I'd soon be feeling better, and he kept his word on that!

I guess I just wanted to say please don't put off seeking the help you need from a urologist because of that terrible experience you had. There are good doctors out there, and life with IC can be managed with their help!

Vicki

[Sheltie Lover]

Please hang in there. Your in a very tough stage right now but things WILL get better for you. The best thing is to educate yourself and your husband. Read as much info as this website offers. Read the handbooks, study the diet and know your options. Communicate as much as possible with your doc about what is working and what is not. Most importantly, give the meds a chance to do thier job. You can help that process by watching your diet. Things will look up for you and when you need someone to talk to or bring questions to, you have this message board.

Big Hugs!
Amy

[ICB]

I'm really sorry that you are suffering so much. But let me give you some hope; after going to the bathroom every 15 minutes, 24 hours a day; getting very little sleep; and also suffering from Vulvodynia and fibromyalgia; I am well 95+% of the year. This is mostly due to a combination of medications, dietary supplements and physical therapy.

Donna gave you fabulous advice; do your research, and start learning about all of the different treatment options and self-help techniques available to IC patients - you can start with the Patient Handbook. The best patient advocate you can have is YOU!

Also, I found these panties that are very stylish and allow for a stress-free day or night when we're not at home; this may allow you to get a stress free ride to work that you're looking for. The panties have a sewn-in pad that traps liquid for built-in protection, they have a waterproof outer layer that prevents leakage, they contain antimicrobial fibers that eliminate odor causing bacteria and can be machine washed & dried between 200 to 250 times. You can find more information on WWW.EVERSURES.COM.

I am a support group leader and have several fact sheets and informational handouts on IC & Intimacy. If you would like a copy, please send your request to icrelief@verizon.net and I will email you the information.

Best wishes, ICB :flower:

[vivig14]

i was diagnosed about 9 ( age 29) years ago via hydro/cysto under general by a urologist. i think i had a small capacity as well. i kinda had the same reaction as you--it was sooo painful, and the uro couldn't explain why i was in that much pain after the procedure (he attributed it to IC, though I hadn't actually had pain as a predominant complaint and certainly no where near that level). Anyway, i sort ran from the whole diagnosis for a few years, didn't do much to tx it except i did start the diet which helped a lot.

recently, i went for a consult with dr. robert moldwin, urologist at Long Island Jewish Medical Center in New Hyde Park, NY. You're lucky to have him in your state. He's very compassionate, personable, and sensitive. And he certainly is THE uro expert on IC. Anyhow, good news for me all this time later, he says i don't meet the criteria for IC. I hope that all my treatments (PT, meds, relaxation training and efforts) have paid off and that's what I'd like to think is responsible for my remission. I still struggle with spasming of the pelvic floor and pelvic pain, but there are so many more options for tx out there (and growing at a nice pace) that now's a good time to come out and give it a second shot at getting better. Elmiron didn't work for me, and neither did detrol, but lots of people on this site have had success. a lot of it is trial and error with the meds and various other stuff, and takes time. hang in there! it will get better.

[toby75]

ICB

I also have Vulv..., IC and Fibromyalgia. What have you done to take care of those awfuls pains of fibro. I am so tired of feeling like I have the full blown flu with the chills, aches, pains. I hate it!

Styxygirl- Sorry to interrupt on your thread. I think keep taking the Elmiron if you do not have major side effects. Also, really watch the foods and drinks you have. I would too, get on some kind of pain therapy. Pain thearpy for me has help me stretch my bladder out from 300cc to 850cc in 1.5 years.

Taking pain meds has helped me with the urgency and frequency to go all the time. This has in turn stretched my bladder muscle out. The longer I hold it the bigger my bladder stretches. Pain meds are not the answer but for the time being if they give you part of your life back and cuts your bathroom breaks in half and you get some much needed sleep, who cares, right!

While you are learning about the disease and taking meds for the disease and learning the ones that work for you and don't, you should not have to suffer. Narcotic pain meds help tremedously in that aspect. I know there are a lot of people that think "oh no" don't take those because they are bad and you could get addicted. Either you live your life in pain and curled up in bed all day and night or take medicine they make for chronic pain patients and live your life. Of course once you bladder gets better and livable, definitely ween off the pain meds slowly. But until you can get together whats right for you to get into "IC remission", don't be ashamed or embarrassed to ask for what you need. It's your life and nobody has to walk in your shoes but you. I guarantee you nobody else wants to walk in our shoes for 30 minutes because in that time frame they would have had to gone to the bathroom twice already lol!

So research as much as you can on your own, be armed with info and find the URO that you like and will work with you!

Take Care
Amy W

[Vampireness]

Styxygirl - I am really sorry about the diagnosis. Although I do understand having been through it myself but did you not think you have something like this living for twenty years this way? As in did it surprise you?

I am actually glad you got diagnosed so that you are able to get these treatments right now.
You mentioned itching.....and I don't know about endometris....though I was tested for it I don't have it. Just wondered about yeast since itching was mentioned.

About your husband, I don't think you should expect a specific timing on when your going to be ok. That will leave you and your husband hanging. So Elmiron has a mind's of it own and it works for some and not for others. But there are other alternatives available if one fails.

I am really sorry about travelling. That is really difficult..I hope the detrol starts kicking in.

Good luck!

[ICB]

ICB

I also have Vulv..., IC and Fibromyalgia. What have you done to take care of those awfuls pains of fibro. I am so tired of feeling like I have the full blown flu with the chills, aches, pains. I hate it!

Take Care
Amy W

Hello Amy W:

I'm sorry to have taken so long to reply to your post. I've been extremely busy; unfortunately, life doesn't slow down for all the important things that need to be done.

I have found that a combination of dietary supplements, prescription medications, physical therapy and exercise has helped me to get my symptoms under control.

If you'd like a more detailed answer, email me at icrelief@verizon.net and we can exchange phone numbers and I'll be happy to give you all the details.

Best wishes, ICB :flower:

[STYXYGIRL]

I just want to thank everybody for the replies. In the past week and a half I stopped eating chocolate and drinking tea, but I haven't seen much of a change in the frequency. I am going to order the handbook and read up on everything. In the meantime all the medication I'm on seems to be making me really tired all the time. I don't have any energy. I'm on Elmiron, Detrol, Impiprimine for depression, zyrtec and birth control. Right now the only thing that brings joy to my life are my two dogs Styxx and Otis and my parot Precious. I hope everybody is feeling well. And thanks again for the advise. I think I'm going to try those panties they sound like a really good option for me.:cat: :cat: :cat:

[Sheltie Lover]

Hi there! Glad to hear you are striving for more info on IC and making an effort with diet. Just stick with it and try eliminating other possible trigger foods. You might start feeling a difference. I know tomato products are a huge trigger. Are you eating pasta sauce, etc?

I know when I took immiprimine, it made me so tires so maybe that could be the culprit. Discuss that with your doc. Maybe there is another option. The other thing you might want to have your doc look into is Chronic fatigue syndrome that makes you feel tired all the time. It might be worth looking into if your sleepiness is a continuing issues

My dogs are my joy too! they are little angels that are always there to lick my tears away! Feel better soon!:grouphug:

[ICB]

[QUOTE=STYXYGIRL]. . . In the past week and a half I stopped eating chocolate and drinking tea, but I haven't seen much of a change in the frequency. . . In the meantime all the medication I'm on seems to be making me really tired all the time. I don't have any energy.

Just thought I'd share that some IC patients are not affected by diet; or if they are, it could be that only a few things that bother their bladder. The best way to know what bothers you is to go on an IC Diet, then add back one IC "unfriendly" food/drink per day. If the food or drink does not increase your IC symptoms, you will most likely be able to eat/drink that in the future without a flare-up.

The medications that you are taking may be causing you to feel tired. However, our bodies are constantly fighting and managing our IC symptoms and this is another reason we feel so exhausted all the time.

Discuss your current symptoms with your healthcare provider; he/she may have some suggestions that may help.

Best wishes, ICB :flower:

[Lamster]

:hi:
I know how you are feeling! I'm depressed too. ******. (Pun intended!) Welcome to the ICN boards. Sorry you have to be here. Hell, it could be worse! Umm, jury still out on that for me too! I wax and wane from I'm gonna make chocolates and pastries for all of us with IC to damn damn damn! Of all diseases on this planet... knowledge is power with the IC ... the more ya know the more you get depressed, then anger fuels my search for a better life and way! Hang in there and keep a food diary. Here's a wee bit of background on my journey thus far:
I'm 42 and just been diagnosed with IC. After many tests (since last Aug.)Was in Spain, they thought I had a virus from food I ate, or the bugs that bit me! Stools samples, MRI's, CT's, with and without contrast. Found out I have extreme GURD and a hiatal hernia! On Nexium twice a day for that! Then there was the colon cancer scare. Then they thought I had a large mass in my pancreas! MRI found 2 large fibroids. After three (first one passed away) OB/GYN's... one finally listened to me! I just had a larposcopy done ... have large fibroids... non issue at this point! Have adenomyosis and pelvic endometriosis and IC! On Elmiron and Sanctura! Diet makes me insane! Flare ups suck! Hate driving too! Ordered a pillow from the ICN store! Here's the rub..... I've never been sick! This IC and endometriosis is kicking my butt! Pain with flare ups brought me to my knees! Irony in all this? I used to be a chef! Was on my way to CIA to be study to be a pastry chef. No chocolate? LOL Thought this was a cosmic joke. Nope just something else! Now I need a complete supracevical hysterectomy. Doc believes we need to save my cervix to help my bladder! I just would like to have my quality of life back. My mom keeps telling me to drink cranberry juice! Not getting it! eh?
Told her I may as well drink a cup of acid! I know that I am not alone. The biggest hurdle is accepting my bladders limitations. Lost my passion for food too! Wonder if I can get a handicap sticker with a stick person crossing their legs?
Gotta keep my sense of humor!
Being checked out from bottom to top... had my eyes checked... reading has been an issue! Now that I must read every label! Eye doc found blockages in my optic nerves sent me to a neurologist. He ordered MRI of my brain, and sonogram of my carotid artery! That's next week! I couldn't make this up if I tried! Ranting... I know! Thanks for listening. Thanks for being here. I woke up to go to the bathroom... and was comforted in the fact that I am not alone. Hugs****:smile tee

[txbogata30]

Hello everyone, it is good to be able to read through things that people have written and to know that Im not the only one suffering. I spent 5 years going to GYN after GYN trying to find out what was making me feellike I was having what felt like labor pains. I fianlly found one last year that did the IC test and diagnosed me with IC, they started me on the elmiron, I took it for about a week, and I hurt so bad witht he cramping and everything that I gave up and quit taking it. I went back last week to get started back on the medication, and found out not only was the IC still giving me problems but I also had high blood pressure maybe caused from the pain. So I am now back on the elmiron and also taking medication for my blood pressure. But it has really been really hard this time, instead of hurting every now and then with just a big attack and it being over with, the elmiron cause continous cramping that will not go away, I am engaged to be married, and live with my fiance, and have for a year, I hurt so much that I dont sleep at night, and dont get to rest during the day because I hve 2 children to tend to, on top of keeping things done in the house, and its really making me a grouch, and like everyone else, sex is very painful, so I try not to think about it too much, but I dont want him to feel like I dont want anything to do with him, so as hard as I try, he is pulling away from me, and talking to his ex now. I dont want to loose him over a medical problem that I amhaving to learn to cope with on my own, cause I know that its something that I am going to have to live with for the rest of my life. Any suggestions on how to cope with all of the adjustments and everything and how to keep your personal life going also please let me know, cause i have no one else to turn to that really understands what I am goign through. Like others, i have also had several DNC"s because of doctors thinking I had endometrosis for so long, and finally had an oblation that stoped my cycle 5 years ago, so my pelvic are has been through alot, and is still suffering, along with mental frustration. The doctor didnt bother to tell me a year ago that this is a problem that I will have for the rest of my life, they told me to use the medicine for 3 months and I should be ok, but now last week is when they finall tell me that I will have it for the rest of my life, it will not go away, and I will have to take medication for the rest of my life, and me only being 32, it is really hard to adjust to that. Im glad I finally found this, and have someone to talk to now

[tblackman]

I am not sure where I should be posting, I am a 32 year old and I have been suffering for five years with what my Doctor calls chronic cystitis. It is not IC but I can't find any support anywhere. In fact the doctor tells me that it is very common and he sees it every day but I don't know anyone that has ever had this problem. I feel like there is no hope of ever being able to lead a normal life. I am in the doctor's office literally every week getting antibiotic injections Is there anyone who is going through the same thing? I take antibiotics every day and have had a problem with intense pain and burning everytime I urinate.

[Vampireness]

txbogata30 - I sent you a PM awhile back, did you get it?

tblackman - I am really sorry....your doctor might either have to change the dosage or the antibiotic itself. If you've done cultures you can tell from them if your making progress etc.

I'm sorry your in alots of pain. But if you don't feel like your going anywhere you might want to consider changing doctors.

[MarthaF]

Many find help through a very thorough culture called a broth culture. Some bacteria are very slow growing or only show low colony counts and are not reported. These can be pathogenic but are not being treated. They require the right antibiotic for the right amount of time. There is only one lab in the US that does broth cultures - United Medical Lab in McLean, VA. You can send a specimen on you own or a doctor can order it. They use a special medium to encourage the growth of some fastidious bacteria and give it several days. Traditional labs do not/will not do this since they don't believe it is necessary.

PM me if you want more information.

Martha F

[tblackman]

That would be great. I have changed Dr's 4 times over the past 5 years. I have been on an antibiotic all this time. Levequin, macrodantin, macrobid, cipro, septra ds and the list goes on. I am at my wits end. I would like information about that broth culture. At this point I am willing to try anything ! Thanks for responding it means a lot to know that others understand what I am going through

[Vampireness]

tblackman - How did your symptoms start? Because you mention you've been on so many antibiotics so I'm thinking with infections? Have they come out positive?

How long were you on treatment, did you feel better while on treatment?

Your currently on medication?...like antibiotics?

Broth Culture for me was very helpful. It found Group B Strep which United Lab didn't dismiss, in my previous culture I see that they have dismissed alots of findings and send me back home saying I have no infection. They did give a whole bunch of paracentamol (painkillers)