Diagnosed Yesterday

[Love2Act16]

Hi! My name is Allie. I'm 21 years old and was just diagnosed with Interstitial Cystitis yesterday. I have been undiagnosed for 3 months and have been going to numerous doctors trying to figure out what was wrong. I was treated for a yeast infection, a UTI, and Bacterial Vaginosis all without any results. I also had an ultrasound and was tested for Chlamydia and Gonorrhea. This Thursday, after pretty much ruling out every other possibility, and getting so upset and scared that I threw up because I was having a flare up, I went to the emergency room. Finally a doctor told me that it seems that I most likely have interstitial cystitis. She referred me to a Urogynecologist who specializes in Interstitial Cystitis. I made an emergency appointment on Friday and was diagnosed with it at my appointment. I have all the classical symptoms: Horrible flare ups when I am stressed that won't go away for hours and keep me up all night, and every day I get discomfort around my Urethra. Usually I am lucky and when I start to feel discomfort I drink tons of water and it usually goes away, slight pain during intercourse and especially after, pain upon urination a lot of the time and so on.

For the longest time, I was completely convinced that I was alone in this and that I had something that would be undiagnosed for the rest of my life. When I found this website, it honestly was a relief. It is so comforting knowing that there are people out there going through what I am going through. It was so frustrating to me that no one in my life really understood how much pain I was in and the emotional strains it put me in. I have been constantly scared that every night or during the day, that I will be in extreme amounts of pain and won't be able to go on with my day. I have been avoiding sex with my boyfriend because I was too scared of the pain so I started to grow distant from him. I didn't feel like a woman anymore. Luckily, I do have a boyfriend who loves me unconditionally and has tried to understand as much as possible (although I highly believe that anyone who hasn't experienced this for themselves will never truly understand what it does to you) but I am so happy to be able to talk to all of you.

I'm new to all of this and honestly do feel a bit depressed. These past few months have been really hard. I'm in college and have to keep missing classes to go to doctor appointments or if I am in pain. Also, I feel so bad putting my mother and my boyfriend through this. All of yesterday I had my mind on the diagnosis. I had my first bladder distillation (I was shaking before they put it in. I have never had something put into my Urethra before!) and was a little irritated because of it and was scared that it would turn into something more. I'm so cautious of what I eat now and feel like my mind is totally focused on making sure that I don't have a flare-up. I feel overwhelmed and upset. I don't want this to rule my life and I am going to try as hard as I can to not let it but I need some confidence.

I am getting bladder distillations twice a week for the next 6 weeks and then starting Elmiron. My questions to you are: have things been helped since all of you were diagnosed? Can you lead a normal life? Pretty much, am I going to get better and be able to lead a life where this doesn't control me? Also, those of you on Elmiron and who had the distillations, have they helped?

Any feedback would be so helpful. Thank you to all of you. I am so grateful to have found you!:hi: *Allie*

[VickiB]

Hi Allie! :welcome: to the ICN!

I'm so cautious of what I eat now and feel like my mind is totally focused on making sure that I don't have a flare-up. I feel overwhelmed and upset. I don't want this to rule my life

This feeling is so normal in the beginning! -And not really a bad thing in the end, as long as you don't get too far carried away I suppose. When I was first diagnosed IC was totally consuming for me. I researched, I read, and put a lot of time into changes that needed to be made. All those things paid off in lessening my symptoms though, and made it so I don't have to 'think' about IC today. I no longer think in terms of what I cannot do or eat, I just by habit no longer do those things.

As to your questions, have things been helped since all of you were diagnosed? Yes, Very much so!
Can you lead a normal life? Yes, pretty much. I still have occasional times when a flare trumps my plans but that's pretty rare in comparison to how it used to be.
Pretty much, am I going to get better and be able to lead a life where this doesn't control me? Most likely. We all seem to find somewhat different outcomes but most people do improve following diagnosis and treatment. Odds are good you'll be one of them!
Also, those of you on Elmiron and who had the distillations, have they helped I took Elmiron for two years (also amitriptyline, hydroxyzine, and changed my diet & lifestyle) and saw a huge improvement. I've never done any instillations, but others here have and I'm sure you'll hear from them.

I'm sorry you've had need to find this site, but we're gald to have you join us!

Vicki

[Goldfinch]

Hi and welcome. You are in very good company here; lots of recently diagnosed women in their early 20's have joined the network. It is absolutely possible and very likely that with treatment you will get your life back, hopefully much as you remember it. Before being diagnosed I was a complete wreck, and very scared. I thought about nothing else but my bladder all day and all night.

You are lucky to have been referred quickly to a urogynecologist and it sounds like your doctor is pro-active and on the case. I am sure you have done some research, and there's plenty here to read on the ICN. The diet takes some adjustment; at first it seems just cruel! But it helps most of us very much, and it's worth giving it a serious trial; it can take a few weeks to bring major benefits, so hang in there. Keep hydrated with lots of water! I was on a very strict diet for nearly a year, but now, after some trial and error testing I am able to eat a pretty wide variety of foods.

I am on Elmiron. It is one of the first drugs many IC patients are prescribed. I have been on it for three months and I believe it is already helping me. You probably know that it can take months for Elmiron to be effective, or even as long as a year, so don't get frustrated--you won't see instant change.

I thought I was having some unusual side-effects from the Elmiron and, with my doc's okay, I cut back from 300mg per day (3 capsules) to 200 for a month. The symptoms went away, I went back up to the original dose and have been fine with that.

This is a great place to look for support and information!

[mbhbarb]

I am glad you found this site; you can learn a lot from other peoples' experiences. I felt much like you when I was first diagnosed. What helped me the most in the beginning was adhering strictly to the IC diet, and paying attention to my symptoms when I added new foods. At first following the diet was difficult because I couldn't figure out how to integrate it into social situations and eating out, but now that I've been at it awhile, I can pretty much do whatever other people are doing but I eat and drink only what works for me.

When I was first diagnosed I was in a lot of pain almost all of the time. I couldn't work, I rarely went out, and I suffered a lot. Now, 2 years after I got IC and a year and a half after being diagnosed, I am rarely in pain, and when I am, the pain is not nearly as bad as it was at first. I'm working again and leading a normal life.

It is early in the process for you and you have every reason to be optomistic about getting back to a normal life. If it works for you as it did for me, "normal" will be a combination of what you considered normal before you got IC, and some new behaviors that you have learned in response to IC.

I hope you are feeling better soon.

barb

[statesboro]

I did notice you have gotten some good responses by now. You have found a good place by coming on here. Besides, we will understand. Most of us look healthy; therefore, many people won't understand. I have noticed you are not the only 20something y/o that has come on here lately with a recent diagnoses.(or not properly diagnosed yet) Ok, then. I did feel lost at first.(1997) At least, there is more information to be found on IC by now. It is probably not uncommon to be feeling the way you are right now. Hey! We don't enjoy having IC, but it is still good to be properly diagnosed. Besides, many people went undiagnosed much longer than you did. Yep! I think that you went through plenty of testing. At least, you must have a good urogynecologist now. Oh! I happen to be a male, and I don't have all the pain now.(hmmm) I have been at my job ever since 1995.(and no symptons then) Hey! I felt like quitting more than once because of IC, but life goes on. You may have to make some adjustments, but life goes on. Ok, then. I have got much love for everbody that comes on here. Take care and be good.

[leelee88]

Hello and :welcome: I just wanted to add that you should check out the Patient Handbook.. You can find the link at the bottom of my signature..Also you could probably get a lot of you IC symptoms under control if you would try the IC diet..

[ICNDonna]

I'd just like to add another :welcome: to the IC Network --- and encourage you to give the IC diet a try.

Warm hugs,
Donna

[BT2008]

:welcome:

~Beth

[c2miracle]

:welcome: Think Positive! :smile tee

[mlsnow71]

Hi everyone,
I have a complicated history and wondering if anybody can help me out. I was diagnosed with endometriosis 10 years ago at the age of 18. I had a scope at the time and had some removed. I went about 3 years and then developed a mass that they thought was an endometrioma. that flared up and caused pain cyclically and i suppressed the pain with birth control pills. That worked for a few years and then last year at this time the mass ruptured and caused a lot of pain. again, i suppressed the endo with continuous birth control pills. I have always noted a night time frequency when i had my period and during the weeks i was supposed to have my period when i suppressed it.
well in december i had to take a lot of antibiotics for chronic sinusitis and i had a lot of break through bleeding and a couple periods. In mind january, after my second period in 2 months, i started having urinary urgency. I dont go to the bathroom a ton more, i just have the sensation that i have to pee all the time. i didnt have any pain for the first 2 weeks this was happening, just urgency. Then over the last 3 weeks, i have been having pelvic pain that feels like really bad period cramps, even though i dont have my period. Sometimes it feels like bladder pain, sometimes just cramps. So my gyn wanted to refer me to urologist to rule out IC, because she said the symptoms could be IC or endo. So i went to see the urologist yesterday and he seemed like a complete jerk. basically, i told him that i had uriniary urgency and pelvic pain and he said "well, sounds like you have IC". He didnt even listen to my other symptoms, like pain after bowel movements and feeling like i have to move my bowels all the time. He said that IC is a diagnosis of exclusion and that my symptoms could be from endo but they could be IC or even both. He said at least with endo you can see and rule that out. So, he did a cystoscopy in the office and said my bladder looked normal. He said that hydrodistentions are no longer used b/c people without IC have the same appearance so it is not diagnostic. He put me on sanctura and uristat and said see you in 3 months. So i am not sure what to do. I am not entirely convinced i have IC, and still think it could be endo. I dont want to take these meds if they arent going to help me. In addition, I had a yeast infection, which i was treating with terazol cream, and no i have a really irritated vagina, all red and feels like burning. So i have a couple questions. From what i have been reading, it sounds like people with IC go to the bathroom a lot!! i dont feel like i have to go sit on the toilet, i just feel the sensation 24 hours a day. I only pee like 5-7 times a day and maybe twice max at night. i also had the urgency for a few weeks without pain which doesnt seem to be consistent with IC. Does anyone have an opinion on this? also, i am scared that i have vulvadynia, because of the soreness in my vagina. Or could this simply be irritated from the yeast cream? also, the uro doc said that if i had endo on or near my bladder it would cause the exact same symptoms!! I have read about IC when my gyn originally mentioned it and i have not had any of the most common trigger foods. I dont drink caffeine and have avoided alcohol, caffeine, tea, citrus and tomoatoes. Nothing seems to make a difference. I just dont even know where to begin with this IC thing. he basically spent 5 minutes with me and sent me off with meds! please help!!! thank you to anyone that can help me
Michelle

[VickiB]

Hi Michelle, and :welcome: to the ICN!
I'm sorry you're going through this. It's both frustrating and confusing!

The first thing that popped into my mind after reading your post is -see another urologist!! I have the impression you don't have a good working relationship with this one you've mentioned,...I wonder if anyone does as he doesn't sound like he has his patient's best interests at heart! Anyway, some doctors are lemons, some are great, your's smells a bit sour!

IC is not easily, nor usually quickly diagnosed. Even the symptoms vary from one person to the next, though there are plenty of similarities too. That feeling the sensation that you have to go is a common complaint around here, as well as pelvic pain. But you need to be comfortable with your doctor and the diagnosis, and it sounds like you're not. -Probably for good reason!

If it were me, I'd seek a second opinion.

Best wishes,
Vicki

[mlsnow71]

Thanks Vicki!
yes i agree. i need a second opinion. Does anybody know of anyone in the boston area?? and sounds like people pee a lot. does anyone not pee that often and just have the other symptoms? i get no relief from peeing. just constant! thanks again
Michelle

[BeverlyJ]

I have not noticed any signifacant changes since I'v been on Elirum and Oxybutynin. I was diagnosed in December and my Uro sceduled me for my first Hydrodistention tomorrow''Im a bit scared but want to give it a shot. Im 32 and I feel what your feeling' It is very hard to live with this from day to day but getting your pain and diet under control can help deminish some of your symptoms. IC is a life long disease there is no quick fix but having a support group is greatly apprecaiated and hope that it can some help to you as well as all of IC patients. Take Care''