finally diagnosed, and looking to connect with other patients!

[admarie]

Hi, I was just diagnosed last week, and I thought I'd introduce myself to everyone here. It's such a relief to know there are others who suffer from the same things I do. I'm 21 years old, and I had these symptoms come out of nowhere last summer. It's made me feel about 50 years older, and it's hard for anyone to really understand. In fact when I suggested to my friends a while ago that I thought I had interstitial cystitis (after googling "bladder disorders") they told me I was just plain crazy, and the fact that I had this constant pain and peeing was all in my head. A few doctors told me that too. Finally I got an appointment with a nationally renowned IC expert and he was shocked that other people had discounted my symptoms as stress and anxiety. I find out this week if I qualify to participate in a 12 week study he's doing, which tests the effectiveness of amitriptyline for IC, I believe. I was wondering what other people's experiences are with this drug, as far as side effects and efficacy in treating IC symptoms.

I feel like I'm new to this, even though I've been studying IC on my own for several months and had all but diagnosed myself. I'd love to hear from people who are newly diagnosed or more experienced, I've never met anyone else with this disease and neither has anyone else I know. It's really been tough and disheartening to be diagnosed this young but at least I know I'm not the only one. Thanks for listening!

[leelee88]

Hello and :welcome: Glad you found us..

[Isabellasmom]

Hey Admarie, my name is Jen and I'm 22 and pretty sure that I have IC also. I actually think that I somehow got it as a result of hormone changes in pregnancy (I just had my baby girl, Isabella, on June 4th). I've also been researching IC alot and have been coming to this site to read about it, but not post. I just started posting recently. I also feel like an old lady, and don't know anyone else who has this condition. It's definitely hard. I want a Dx so that I can get some meds to help me, but unfortunately, most uros have been telling me it's just a pregnancy thing and should go back to normal w/i 6 mos. Meanwhile I've been suffering thru it and taking care of a 6 wk old baby 24/7, which has been hard. My BF and I don't live together r/n, so he sees her when he gets off of work, and since he works a 9-5 job, he can never stay late. I'm not working r/n due to the fact that I hafta take care of Isabella and the Peeing Problem (it's what I like to refer to my probable IC as). My family and BF are all just starting to realize that I was NOT exaggerating when these symptoms started in my PGcy. How did your symptoms start? Mine just randomly started in my 7th wk of PGcy. If you want, you can email me at jkostenski@hotmail.com. Talking online is just about my only social life r/n now bec I'm always w/ my daughter (she's a big crier). Hopefully I will talk to you soon!
~Jen

[Krisi]

Welcome! I am sorry it took them so long for a diagnosis. I hope they find the right meds for you. I have had IC since the end of 2003. I started amitriptyline also know as Elavil about 3 weeks ago. I don't know how much it is helping. I am also on Elmiron and Atarax, along with weekly heparin instills for about 6-8 weeks. I was recently diagnosed with vulvodynia and pelvic floor dysfunction, which I recieve PT for. If you have any questions or just want to talk feel free to PM me.

Krisi

[Dani1978]

Hi, my name is Danita. I haven't been officially diagnosed yet, but I have been researching IC for weeks now. I am seeing a urologist that wants to exclude Overactive Bladder first. He put me on some OAB meds about three weeks ago. My main issue is frequency with occasional burning sensations, and a tight feeling in my pelvis area that comes and goes. From my internet research, these symptoms CAN be caused from stress and anxiety, but I definitely don't think docs should overlook the definite possibilty of IC. I kind of feel that my uro isn't being as proactive as he could be due to my history with anxiety.

I am glad you found this forum. It is great to know that others know what you are going through! I am definitely a newbie and can't offer the insight others can, but feel free to PM anytime! I love getting to know new people!

Take care!
Danita

[petrie86]

Hi admarie!!! i'm also 21... just turned 21 on july 7th. I was dxd in sept 06, and like you had been told by many uro's it's all in my head and i'm crazy. Especially by my bf, he always told me that i'm just stressed. But finally i saw a specialist who dxd me. I started out with instills which didnt work, then i also was on elavil (amitriptyline). I stoped taking it b/c i was having a fluttering feeling in my heart. My uro thought it might be that med but it turns out it's not. I'm still having that feeling and am seeing a cardiologist tomorrow. But anyways I'm also on Elmiron which has helped alot. Elavil is a great med, and helps people sleep through the night. I hope your dr puts you on it. Maybe also talk to him about other options. If you ever need to talk to someone your own age pm me! Hope you get some relief soon... hugs

Rach

[SharonA]

:welcome: to all of you. :hi:

Marie...You asked about Amitriptyline (Elavil). I have been on Elavil 25mg for several years. It has given my life back to me after spending many months in terrible pain from IC. Elavil can cause some tiredness at the beginning. It can cause your blood pressure to go up. It can cause some weight gain. It can reduce the frequency/urgency that goes along with IC for many of us. It also works as a pain med when taken at low doses by interfering with the pain receptors in the brain. Since it's main purpose for existing is that it is an antidepressant, it might help for depression even though it is prescribed as a low dose med when given for IC. There are other side effects related to this med, but the best one for me is the pain reduction.

[jubejube]

Hello and welcome to the site! :smile tee
Sorry i dont have any experience with the drug you were describing, but if you could offer any information to me, that would be great! :help:
I am newly diagnosed, and young as well (26) and have been dealing with how this will affect my life... its life-changing, but hopefully we will all be able to find the best ways to deal with it. Im so sorry you have been having such a tough time, and with your friends not believing you, that must be very hard!
Hopefully you find the best treatment for you!
Take Care,
jube

[humpieumpumkin]

Hello! I am 22. Before dx, doctors told my parents I was faking it to get their attention since they were going through a divorce. :rant: I think doctor think for some reason if they tell you its in your head the problem will dissapear. Oh well. Alot of us have been told our problems are psycological. I am so sorry you had to go through that, and that you are suffering with IC.

Erika:welcome:

[cc_orchids]

You and I are have exactly the same symptoms. I had to read your post twice because I couldn't remember writing it and I was reading about myself. My main problem is also frequency, with some occasional burning sensations (but always goes away fortunately), and some pelvic pressure that comes and goes. I too am are taking Overactive Bladder medication along with an antimicrobial. I'm not sure where my dr. was going with this since he already diagnosed me with IC but I have a lot of questions for him when I see him next Monday.

I'm interested to see what your dr. says and I will definitely post the results of my conversation with him next week.

P.S. I was also born in 1978.

Claudia

[tuvaralm]

:welcome: I hope you can find some advice here, and I know you will find some support! Good luck with everything

[Bessie]

:welcome: We are all here for you!!