Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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katster 02/06/2011

Hi everyone,

I'm having a really hard time right now. With everything with my health and my constant pain I just feel like I can't take any additional upset. I'm planning to graduate in May which means I will lose my doctor and my therapist, two pillars of my support system, because they work for the school. That is freaking me out because I feel like I won't know who to turn to for help period. I'm sure you guys face this too, but I can't talk to my close loved ones about what I go through because they get too upset/freaked out and just cry and are miserable about it. To know what I go through is a burden to them and talking to them only makes me feel worse and sometimes even hopeless. Those of you who know me know that I'm an unfailing optimist and a positive person period so if there is something that can actually bring me down, I need to avoid it. I feel like you guys are the only ones who will understand this. I am terrified to not see my doctor anymore. I am terrified to not see my therapist anymore. I am terrified to move home because at school I am about 5 min from a hospital and here it's more than 15. I feel like crying all of the time. I really need your support right now please. Any messages will be greatly appreciated. Thank you.

deleted_user 02/06/2011

I wish I could give you a hug (a gentle one so I dont hurt you) Sorry your going through this, I feel so bad, I really can relate. Your going through such a tough time right now, if I could only use a special wand to make it all better.
Could you ask your doctor to refer you to a good doctor. Or talk to your insurance company to refer you to a Urogynecologist?
I know what you mean when family members do not understand!
My family is not supportive at all.
Is there any way you can communicate with your family for more help and support.
Do you have more pain when your stressed? That happens to me, I cant handle stress, I just want to run away lol.
I am here for you any time! Hoping you find some relief from your pain and all that your going through! Praying for peace and comfort.
Take care!

katster 02/06/2011

Thank you so much hun, I appreciate it. My doctor unfortunately doesn't have colleagues that he will refer to me to in Toronto. Since I have other conditions, I need a GP because that's what I'm losing. I still have my specialists, minus the therapist because she's at my school too. I hope that in time my family will be able to better handle what's happening and give me more emotional support but right now they're still too upset that it's happening at all. Yes, my pain is WAY worse when I'm stressed. WAYYY worse. Thank you for your kind words. I hope your family becomes more supportive as well. Take care!

Simone50 02/07/2011

I understand what you mean, too. I think other people who don't have our illness and pain just don't get it. That's why they make us feel worse. They just don't know what to do to help us, because there really is nothing they can do. Honestly, other than your doctors, I think support groups like this one is the best way for us to express our feelings and pain. Sharing our experiences and treatment options with people who have the same pain is the way to go because WE GET IT. Not very many people are supportive of me, either. I also hide my pain well in public. I'm not a complainer and no one understands IC anyway, so why bother? This is the only place I can vent.
I hope you find an answer to your needs after you graduate. The stress of it all will make you hurt even more. I'm so sorry for you.. and for ALL of us here.
Please vent to us whenever you need to. We are here for each other. It's so important to be able to talk about this to someone who understands.
Take care!
Hugs,
Simone

katster 02/07/2011

Thank you so much Simone. Since the moment I joined this support group, I knew that I was never really alone. You guys do get it. Thank you.

deleted_user 02/09/2011

Hi Kat, I'm so sorry that you feel so overwhelmed right now. You always have us. I agree with Simon, people who don't have our disease just don't understand. My family tries to act supportive but they aren't. Stress very badly affects our symptoms too. I really hope that you are able to find a new doctor and therapist. I graduate in May also so I know how much stress you must be under trying to find new caregivers. We are always here for you. That is what is so great about this website. We can relate to each other. I hope that things will get easier for you. :) Laura

deleted_user 02/12/2011

Congrats on being almost done with school it will be such a sense of relief and accomplishment when you're done...I actually didn't believe I had actually done till a few months later when my diploma arrived in the mail!

So what are your options for health care when you're done with college? You're in Canada right so that means you don't need insurance cause of universal health care? I'm not sure how it works though my suggestion would be to to start looking for doctors now, checking out their reviews, asking around to see if they're good etc. Maybe that will give you a little hope to know that when you're done with school you can transition into doctors who will help you.

I'm sorry you're family isn't as supportive as you need them to be I hope you can talk to them and they will come around.

katster 02/12/2011

Thank you so much for the support. Laura - congrats on being almost done! That's amazing! Yes, thank God for this site. I would be alone with out it and would have 5% of the knowledge I have about IC. As for health care, yes, I don't need insurance and I think you're right about starting to look now. I have so much school work to do to finish since I have been in this horrible flare for weeks and it is stressing me out very badly. I hope I can curb the stress so my pain doesn't get even worse than it already is. I just need to hang on another couple of months and get it done somehow. Do any of you push yourself too hard? I know I have been doing that and that is one of the reasons my pain is so bad. It is hard to find a balance though when there are assignments with deadlines. Thank you again for your support, I'm definitely going to need it in the next couple of months.

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