View Full Version : newly diagnosed and terrified
07-16-2004, 06:32 PM
It's Friday night and I'm at home crying my eyes out because the IC diagnosis came today. I've been having symptoms for more than 12 years now, and I'm 32 years old. The first big flare came when I was 20 - I had a "bladder infection" for over a year. Without a doubt, it was the worst year of my life. At the same time, sex was almost impossible because of vaginal pain. I went from doctor to doctor, got told I was crazy, drank gallons and gallons of cranberry juice (which only made things worse) and eventually got sent to a urologist. He said that he thought I had IC and that there was nothing for me to do but go to a support group, and that I would be the only woman under age 40 there.
I went through the distention in 1998 after putting it off for years. I had horrible results - bleeding and pain like I've never known. I mean, it was that Stephen King kind of cry for mommy, uncontrollable shaking pain. But, the doctor said that it wasn't IC - everything looked normal.
So, more years went by with more painful sex and more "bladderiness" - my term for it - that got lots worse after drinking alcohol or eating spicy food. I went to see a urogynocologist starting three weeks ago, and went through some sort of test where they look at bladder capacity. Today, I had the in office scope. This doctor showed me the scar giant *ulcer* I have and diagnosed me with ulcerative IC.
This is the worst thing that I could have imagined. Going in to the appointment today, I was thinking to myself, "well, at least it's not IC. You can handle anything but that..." I feel like a little kid who thought there was a monster under the bed, got a professional to check it out and was told there was no monster, only to find out the the "monster" is there, is the kind with scary big teeth, and has been taking bites out of me for years.
I started elmiron and elavil tonight. The diet starts tomorrow, and some sort of instillation therapy begins next week. I don't know why they didn't start it today, but I was so shaken that I didn't think to ask.
The absolute kicker - this isn't my only chronic illness. I have rheumatoid arthritis and an inner ear problem that causes me to have intermittant vertigo. I'm so, so, so scared that the meds for IC will make the inner ear thing get worse.
I'm sorry to go on and on. I'm just about at the end of my rope. It's late-ish at night, and my husband's out seeing a friend's band perform; I insisted that he go because I'm sick of him missing out on things just because I'm not feeling well! I'm begging anyone out there who reads this to tell me what might and might not help - the diet sheets I got from the doctor made it look like I can't eat anything at all. I am at the end of my rope and don't know how much more I can take. Please advise.
07-16-2004, 06:53 PM
HI Terrierhead. I'm am sorry to hear you have IC - it is a life altering condition that comes with lots of discomfort. You have come to a great place with people who genuinely know what it's like to have IC. They can share stories and provide comfort when our closest family members and friends can't get why we feel so bad or can't do the things we used to do.
I have recently been given the IC diagnosis (in the past 6 months) and have been able to find relief with treatment. It took a while to get the official diagnosis and two urologists before I was satisfied with my treatment. It's on some level a trial and error process because each person with IC is a little different. One of the best things you can do, is follow the IC diet low in acid. Cranberry juice is one of the worst things you can drink by the way. There's lots of info on the ICN website.
Please remember that a lot of people will post on here, but you don't always hear from the ones who are living almost normal lives with treatment. A lot of venting can happen hear. I will say, life will never be normal like you knew it before IC, but you can find a "new normal" and live a pretty normal life. I still have good days and bad days, but for the most part I do good.
I would definitely recommend the over the counter "Prelief". YOu can usually find it in tablet form at drug stores where antacids are sold. YOu may need to ask the pharmacist to order for you if it's not on the shelf. You take it with food and it removes the acid from your food, thus you have less bladder pain.
Again, Welcome to the ICN. I hope that you are feeling better soon and can find a treatment that works for you.
Sending thoughtful hugs ~
07-16-2004, 07:16 PM
:welcome: to the ICN. i'm so sorry you had to wait so long before you got answers to your problems but the good news is with the right treatment they can be normal life with IC. some even have a great relief with the IC Diet alone.
Please read www.ic-network.com/handbook this has alot of wonderful and very helpful information there.
I have found alot of relief with the bladder cocktail treatments.if you need anything please let us know we do care.
sending you hugs and prayers
07-16-2004, 07:43 PM
Things will hopefully not always be this bad,life with IC is difficult & painfull & even very lonley at times. But with diet,meds a good DR /uro ( this is so important) & the fantastic support people here you can always turn to things will get better. Take time to rest do as much research as possible & hopefully you have a good support network at home.
I too are going through a hard time at the moment & just learning alot more about medications & the IC diet so I'm hoping for an improvement soon.
This is a wounderful place I havn't been coming here long but have had IC for about 15years. I lean to these boards for all types of info. I live in Australia so info is abit limated here.
I hope you too find the much needed support here. It's just nice to know that we all share in your problems & understand what you are going through.
I hope things start to get better soon if you ever need to talk you can pm me at any time
07-17-2004, 01:19 AM
Hi and Welcome,
Sorry you have IC but the good news is there are treatments available! Good luck with your installs next week!
The handbook has helpful information http://www.ic-network.com/handbook/. There is a section on diet in the handbbook!
07-17-2004, 02:36 AM
I just wanted to add my :welcome: to the many others already here!
I'm so so sorry to hear that you received an IC diagnosis today, especially after being told you did not have it years ago. I can imagine how frustrating that must be. You've come to the right place for love, understanding, and support though... this is a wonderful website.
However, there are treatments available that can work wonders for many people, and most people with IC feel okay most of the time! It is a bit of trial and error -- you've already experienced the first of that trying to find a uro/uro-gyno that knows what he/she is talking about -- but most find somthing that works.
The best thing to do is communicate with your doctor... if you feel a treatment is not helping, SPEAK UP!! There are many more options out there for you to try :)
Good luck... :grouphug:
07-17-2004, 02:51 AM
I'd just like to add another :welcome: to the IC Network family.
For me (and I was diagnosed in 1975), the worst time with my IC was before I was diagnosed. Once I actually knew what was wrong, I could begin treatments and work towards feeling good. At that time there hadn't been given much thought to a relationship between IC and diet so I found my diet triggers strictly by trial and error.
The diet can be a challenge, but it's well worth the effort. Many ICers find the diet alone is a very effective treatment. And remember --- when you are feeling better, you may be able to add back some of your favorite foods. Most of us are sensitive to the really acid ones (cranberry anything is probably the worst one) like citrus and tomatoes.
I know you're feeling upset right now, but you have already dealt with IC for a lot of years --- now you know and can be treated. It may take a while to find exactly which treatment options work best, but most of us do.
Sending warm welcoming hugs,
07-17-2004, 03:20 AM
I am adding my :welcome: to the others. I am so glad you found our ICN. This is a wonderful place full of information, wisdom, personal stories, and a bunch of very caring and supportive people. Most everything I have learned about IC, I have learned here.
I am known for telling "newbies" that knowledge is power. Spend some time reading the information that is available on this site. Don't try to do it all at once. It can become overwhelming because there is so much.
I am one of the ICers who have found treatments that enable me to live a pretty normal life in spite of IC. There are even days that I am unaware that I have a bladder unless I have to urinate.
I do watch what I eat and drink alot of water. I use Prelief with some foods and drinks that I have found cause my bladder to become "angry" with me. The others that cause me to have major bladder pain, I do without. Check out the IC Diet available here.
Please don't be discouraged. Like Donna said, most of us find the treatments that work for us. IC is a very individualistic disease, so we have to discover for ourselves, with the help of a good doctor, what does and does not work.
Stay in touch...reach out to this group...and stay positive...
07-17-2004, 04:36 AM
Just wanted to say hello and :welcome: .
You have a great support system here! The ICN is great.
You've gotten so much good feedback here I don't really have anything to add. But I do want to welcome you!!! :welcome: And reassure you that most people with IC do find treatments that help. I hardly ever flare anymore --- I feel normal most of the time, so hang in there!!!!!!!!!!!!!!!! :)
07-17-2004, 05:22 AM
Hi! I just wanted to tell you that I also live in Kansas City (Blue Springs) & would be more than happy to talk or even meet with you. My email address is firstname.lastname@example.org. Please feel free to write me & I'll give you my phone number so we can chat. Take care - Karma
07-17-2004, 05:25 AM
Hi, welcome, I'm so glad you are here! :thumbsup:
Like everyone has said, you have already gone through the hardest part. Now after suffering for years from this, you finally will get some help! And there is a very good chance you will be comfortable soon.
Many IC'ers find good relief from Elavil, and a percentage find they are comfortable after several months on Atarax/Elmiron.
You may get to the point on these medications that you almost forget you have IC at all!
As far as I know these medications won't cause vertigo or make it worse. They do give you dry mouth, though, so that's something to think of, and can cause constipation.
Unfortunately it's very common for IC'ers to have more than one illness. They haven't ruled out autoimmune disease for a cause of IC yet, and it's common for those who have one autoimmune disease, to develop others.
I think you will soon be much more comfortable, and when those icky feelings go away, you will feel more in control of the situation and not as scared as you do now.
07-18-2004, 11:23 AM
Hi & welcome!
Everyone's given you great advice. The only thing I have to add is that I too have had bouts of vertigo, (not any fun is it?), and the meds didn't cause me any problems.
Best of luck in finding treatments for your IC!
07-19-2004, 05:55 AM
Hi! :hi: I just wanted to let you know, I'm 34 and was diagnosed w/IC almost a year ago. I've been on Elavil and Elmiron for several months and have had no side effects from Elmiron..and I only felt groggy on the Elavil the first week. My vaginal pain went away completely after taking my first Elavil. I still have alot of the bladder pain off and on..but I'm still experimenting w/my diet and triggers. I just found a urologist who will start DMSO instillations on me soon. I too have more than IC..I have chronic back pain from a bad ruptured disk for years, and am starting physical therapy soon to try to avoid surgery for that. I had to have a hysterectomy almost 2 years ago for chronic pelvic pain. It turned out that's not even what was causing my pain..it was the IC. :( My husband is in the Army and very healthy and active, so I know how it feels to not be able to do the things your husband can do. And, can also relate to the painful sex issue. I too was very overwhelmed at first by the diet. I ordered the "IC Cookbook" off this website and it's helped alot. Please know that you are not alone...I am betting you won't be the only woman in that support group under 40. If you are it's pure coincidence, because I've heard of alot of women our age who have this. Please feel free to pm me anytime if you want to talk. I have some good recipe ideas when you're feeling up to trying them. This website helped me lasso that monster and feel more in control. :grouphug: Take care-
07-19-2004, 06:10 AM
Just wanted to add my welcome...:welcome:
I know right now everything is very overwhelming...at least it was for me. Just remember...you may think you can't handle this, but you will. Relief is there....but it's like the others said, you just have to find what works for you. The diet is a big part of it. But you will learn what works for you and what doesn't. After you IC is under control with a strict diet and whatever else it takes, you can start trying things out to see what you can eat and what you can't. Some things might not affect you the way they affect others.
Just to let you know there is light at the end of the tunnel, I have had MAJOR pain since last September.....BUT now I'm on day 6 with no pain!:thumbsup:
I'll keep you in my prayers....there is life with IC.
I will add my hello to you as well. I have just been diagnosed with IC in March. I have gone through the DMSO instills but ended up finding out that the diet is my best defense. And yes you are right about feeling like there is nothing left to eat. Everything I really liked was on the no no list. I decided to do the elimination diet and started only eating rice and bland vegies. I could never add to it because I could not get out of the flare. I was getting really upset because the DMSO treatments were not helping. Then (duh!!!) I thought maybe it was the beer I had at night. Well you can guess what happened when I stopped drinking that one beer.......my pain decreased dramatically. So far I have had 8 days without burning. This is a record for since Nov 8th I have not had a day without burning. Not all due to beer!!! but I was ignorant about the diet until 4 weeks ago.....due to the urologist not telling me just how important it is. So stick in there.
I think that arming yourself with all the info about IC and taking control of your diet are two really important things to do. I know that is hard to do immediately after diagnosis....at least it was for me. But by taking that control I think you feel better about the situation .... for so much of IC we have no control over at all.
Also main thing to know is that you are not alone at all. This network really helped me because I know of no one personally that has IC and all my friends are not really interested in me talking about it. This is wonderful place to make new friends that truly understand where you are coming from.
Days will look brighter sooner and you have to hold on to that and know it will happen.
07-19-2004, 09:34 AM
Oh, yikes, BAM... poor you! :(
I know how that goes... Beer is one of my absolute worst triggers... even if I have a sip or two of my husband's beer I start having problems.
I'm glad you discovered it was a trigger for you too. It's really depressing sometimes, when you can't have something that you love anymore, but I think I'd rather avoid that stuff than deal with the pain and incessant peeing. I don't drink beer anymore... I used to like it though, especially in combination with pizza, another big old no-no on the IC diet.
Good luck with your diet :grouphug:
Hi, wanted to add my :welcome: to the group, and the gals have given you some good advice, and there is definitely a light at the end of the tunnel, it just takes time. I agree with Donna, that I think the worse part is not knowing what is going on with your body, I know I was overwhelmed with pain and worry before I had my diagnosis. It has been just over two years, and with the right meds and avoiding my food triggers, taking Prelief before a meal, if I am not sure, life is almost normal for me. It did take a while to find the right combination for me, and the right urologist, and I have also a wonderful Nurse Practitioner, who I have to check in with every couple of months. The group here is the best support group in the world, with great support, compassion and information, you have definitely found the right place to get help dealing with your IC. Take care and welcoming hugs Iris.:hi: :grouphug: :flower:
07-19-2004, 03:48 PM
Just wanted to add my welcome.:welcome: :welcome: :welcome:
Since I basically seem to be one of the last normal welcomers this time that will be all for now other than I want to personally tell you if there is anything I can do for you....or if you just want to talk with someone outside of the boards....or think you might in the future...Private Message Me.....we can exchange contact info there.
07-21-2004, 09:23 AM
See, and I thought that the burning and constant peeing with beer were *normal* LOL. Guess not. Can people with IC have alcohol at all? I miss cocktails - no alcohol for more than 2 weeks now, and I used to have a glass or two of wine every night.
07-21-2004, 02:37 PM
Well, I guess this is one of those things where we're all different! Wine puts me in a world of pain, right up there with tomatos! I haven't tried a mixed drink since begining the IC diet, mostly because I know my bladder throws a fit over soda and most juices too. I don't know about regular beer, (Bud, Coors, Miller, etc), but I like dark brown ales, and they don't bother me a bit!
07-21-2004, 02:51 PM
Alcohol=Pain for me! I don't follow the diet--Bad me. Maybe I should and I'd be in less pain. Elavil has been a miracle drug for me. It cut my pain way down, I no longer wake up 5 times a night to pee, and I sleep GREAT! The first few weeks were hard--I was REALLY tired until my body got used to it.
Don't fear, Get educated! :)
I live a semi-normal life and I have gained the strength to go on, despite the pain. Don't let your bladder take over your life. REST REST REST :woohoo:
07-21-2004, 03:32 PM
Well, beer and red wine are my two worst alcoholic triggers... and terrierhead, for a long time I thought the constant urination, burning, and pain after these were normal too, so you're not alone with that :) Since then I've discussed what it feels like to pee with my husband and with my best female friend and discovered that my sensations during urination are highly abnormal.
Anyway, as for alcoholic beverages, I can drink sweeter, less acidic white wines like Rieslings if I (a) only have one or two glasses and (b) use plenty of Prelief before each glass. I can do clear drinks like vodka tonics if I follow the same rules. It also helps if I don't do it every day... once a week for a treat on a Friday night is about it these days.
I haven't tried stuff like whiskey since diagnosis. Don't dare!!!!!
I have tried Bailey's Irish Cream in milk and that works ok for me, but again, moderation is key. I used to LOVE Baileys in COFFEE after dinner but it's a double whammy now for my IC--- it "puts me on the can all night" as my DH jokes.... :)
07-21-2004, 05:04 PM
Just wanted to wish you a warm welcome from way up here in Massachusetts! :hi: There is really not too much to add, since these ladies have again astonished me with their genuine caring, compassion, and sound advice. They are a truly wonderful group of people with alot to offer, as in advice, a shoulder to cry on, or a rock that you can scream, yell and vent to, and they will not yell back. They will be compasinate and caring :angel: . I hope things get better for you soon.Please come back and post oftn so we can know how you are doing, and help if we can! Best wishes for better days ahead (ASAP!!!!) Sheri G :kiss:
07-21-2004, 05:53 PM
I am not a beer drinker, I like mixed drinks but It seems like any kind of alcohol= days of pain for me, so I stay away from it, I thought a half a rum and coke would be ok, no-no-no my bladder did not like that :(
10-27-2004, 06:59 AM
Hello terrified and others,
I posted my newly diagnosed story just recenty but wanted to provide a positive story.
My IC started last year I believe but I was mis-diagnosed, I had a cystoscopy in Ireland and the results showed nothing, mind you no biopsy's were taken. I had 4 very severe bladder infections last year (all after sex I might add) and 2 showed bacteria and 2 showed no growth. However I started having pain all the time with a full bladder. I did a lot of research on the internet and started taking the herbal teas Yarrow, Horsetail, green tea and cammomile, and also took Urva Ursi, Golden Seal/Echinacea and Quercetin complex. I tool all of this for about a month and completely cured myself - It was amazing as previously I was going to hospital every week due to my pain, and then a month later I had no pain at all and could enjoy sex again with my partner. Everything was great since Feb this year and now it has flared up again (no reasons, nothing changed). I am dreading having to take all these herbs again, as I worry about the effects on the kidneys. So at the moment I will stick to my Detrusitol then after my 6 week pack will try Elmiron as there have been lots of success stories posted. But I wanted you all to know that I did have virtually no pain since februrary so that was a good 8 months.
Let me know if anyone else has tried any herbal products
10-27-2004, 08:35 AM
I know of one woman who was cured by herbs so there is help for everyone
11-01-2004, 06:39 AM
does any one know about the product CystaQ - i cant seem to find it over here in london? Also know one has heard of Elmiron - where can I get these products??
Any Londoners out there???
Any success stories on herbal remedies, I would like to know if anyone else has had success...
You will find CystaQ on this website at the above link. Take a look, I haven't checked on it in a while, but you should be able to find info on the internet I would think. Elmiron is a prescription drug here (USA), it also should be findable through a search on the net. Many, many people with IC use it for their treatment plan. Hope this info is helpful!
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