Alright my fellow IC patients. It’s time to start what I believe is the most important and meaningful contest for IC Awareness Month!
What’s your IC story
Why: Every patient story is important. From when your symptoms began to how you’ve been treated by family members and friends, your experience and your voice matters! We want to know what struggles you’ve faced and successes you’ve had. What treatments have worked for you? What’s not working?? Does the diet help? Have you struggled to find a doctor who will treat IC? How is life for you today? Long or short, a tear jerker or a smiling success, we want to show the world what life with IC/BPS is really like.
To protect your privacy, your entries can be anonymous and/or with a fake name. All we need is a working email address so that we can contact you if you’ve won the prize. Some stories may also be added to the ICN Patient Story Archive but, again, we’ll email you first and make sure that it’s okay to do!
Prize: One random responder will receive a $100 gift certificate to the ICN shop where you can purchase the latest books on IC, as well as supplements, low acid coffees, chair cushions and much more!
How: Responses must be placed on this blog post (not Facebook) OR emailed to jill@ic-network.com to be eligible for the gift certificate. Current ICN Patient Support Forum users can log in right now with your user name and password.
If you’re new to the ICN Patient Support Forum, you can register by filling out the REGISTRATION FORM HERE! All you’ll need to do is select a user name and password and confirm your age. Our system will send you an email to verify that you’re a real person! Then just log into this page here!
Entry Deadline – Saturday, September 30, 2014 MIDNIGHT PST
Any problems?? Pop Jill an email at: jill@ic-network.com
Hello all, I was diagnosed with IC in June of 1989, was suffering with extreme pain in my pelvic area for years but it got worse after I had my children. I had my first child when I was 19 and things were okay but always had a hard time during menistration the pain was terrible. Then I had a tubal preganancy and the doctor that performed the surgury made a mess of my insides, which I found out when I went to a gynocoligist after I had my son. The reason I went was because of the severe pelvic pain and he performed a laparoscopy to see what was going on and he said I had to have a hystorectomy because I had varicose veins on my uterus. After that I was still in horrible pain, so another laparoscopy and he then said I had extreme scar tissue from when I lost the baby so it was squishing my ovaries. No more ovaries and still severe pelvic pain, then got referred to a uroligist, he took a look into my bladder and I was then diagnosed with IC. I have tried everything possible to help with the pain, installations, medications, TENS machine, it’s been so long since diagnosed I don’t remember all. Right now I am doing bladder instillations four times a day and in it is, Lydocaine, Sodium Bicarbinate and heparin. Have been doing this for about two and a half years starting with one a day. Now I am looking for a new uroligist because mine retired and the wait list here is nine to twelve months and going to my other one in Vancouver is too far and he says he doesn’t think there is anything left to do for me. This part has been really hard on me because I know there is nothing else unless I want to try Botox but not really wanting to or bladder removal and I am not ready for that. The emotional part is the hardest to deal with, during my twenty five years of dealing with this invisible desease so many people say that you are faking it so you don’t have to do anything. How I wish I could do so much more, it would be awesome if I could transfer the pain for one minute so that they get it. The only one that really knows is my husband, he is such an amazing man he helps me get through this every day, he sees what really happens to me. His love is what helps me stay sane and not as depressed, I am so thankful that I met him and he stood by my side while going through this. I hope my story has helped at least one person I know that reading other peoples story helps me, I know it seems crazy to want to find others like you who are going through the same things but it helps knowing you are not alone and for that I want to thank all of you that post. Have a wonderful pain free day!!!!!!!!!!
When your symptoms began: On the 4th of July, 2012, I thought I had a urinary tract infection (which I had only ever had once years prior). I went to my general practitioner and was told “no, you do not have a UTI” based on the test they did in the office. The doctor said “you may have interstitial cystitis” and proceeded to give me a referral to Dr. Howard Horne’s office. I made an appointment for later that week with him (all the while missing work due to the worst pain and urgency I have ever felt) and was given an instillation right there. He then scheduled me for a Cystoscopy with Hydrodistention under anesthesia. It was confirmed I had IC.
How you’ve been treated by family members and friends: My husband has been my main support, however, my boss is wonderful as well.
Struggles you’ve faced and successes you’ve had: After my hydro, I felt better immediately. Unfortunately, no one at the office told me I had to come back for DMSO treatments so I didn’t. It wasn’t until months later that I had another flare up that I went in and the physician assistant was surprised I hadn’t come back (until I explained that no one told me to!) I then proceeded to have a few months’ worth of treatments and felt well for another few months.
What treatments have worked for you? What’s not working?? Does the diet help? The treatments that have worked have been trial and error. I take 300 mg of Elmiron daily and although I do still flare up, I have never been in agony like that first week. I also take 4-6 Desert Harvest aloe pills and two 25mg of hydroxyzine (atarax) daily. I never miss the elmiron or atarax. On a bad flare day, I would urinate 17-20 times; yesterday I went 8. That is amazing!
I am VERY diet sensitive and have found out the hard way that I really can only eat the items in the safe column (and not always then). This was trial and error. Oh and using Uribel (makes your urine blue) or Azo (orange) has helped during flares. I pretty much drink water with no additives (tried Evian and think it over alkalized me) and Marshmallow root tea. Once a month, maybe a root beer. That is all!
The biggest advice I have (and what has helped the most barring meds) is KEEP A FOOD/DRINK DIARY! I have written down everything I ate or drank, along with whether there have been any particularly bad allergy/pollen days , and it helped immensely to determine what was a trigger for me. I started some cystoprotek and never equated it with flaring until I stopped taking it!
Have you struggled to find a doctor who will treat IC? No. I am lucky to live in a heavily populated area in that regard.
How is life for you today? In general, I am still learning the ins and outs. On good days, I run errands, take my boys places, and get as much done as possible (and always, good or bad, I work full time). On bad days, I rest and my husband takes care of the running. I am hoping to keep my food diary going for another year or so until I feel confident that I know my triggers well.
So IC is a big deal…I was diagnosed in 2011. It is one of the most painful diseases you could have both mentally and physically. The physical pain is medically equivalent to that of a person in the end stages of cancer. Sadly there is no cure and very few treatment options. No, this disease is not terminal or contagious. What’s the big deal, right? It affects everything….No tomatoes, No Caffeine, No Pizza, No Spaghetti, No Spicy food, No Soy products, No Chocolate, No Carbonated Drinks, No Fruit, No Juice. Outside of food the slightest jar of a car can cause my bladder to spasm in pain that will double me over. I’ve spend days where only a hot bath will relieve my pain…8 hours in a tub of water is not a way to spend the day. When I go to work each day I sit on a heating pad because I am determined to not quit. I lay down at night and the only way to sleep is with a heating pad between my legs. Yes IC is a big deal. What needs to happen? People need to know about this. I’m not alone, more than 12 million people in the US have IC. Dr’s don’t understand, they throw their hands up and say I don’t know what to do. We need to spread the message…Stop the suffering. By God’s grace I am here, and I thank God because without Him I would never be able to handle this disease alone. I am so thankful for a understanding Husband that holds my hand through it all. Don’t take me wrong because I’m not complaining! I’m just sharing my story and doing my part to get the word out…..IC A CURE
failed to put my current email address kaylynechandler@yahoo.com
Before IC my life I was living out my dream. I was in the beginning of my teaching career, I was engaged to be married, my husband was hired full-time right out of school,… Life was great. I was married in February of 2010 and within a few months I started to experience what I thought at the time was a string of bladder infections. In April of 2010 I had a bladder infection and was treated by my family doctor with antibiotics. Less than a month later I thought I had another bladder infection, so the doctor called me in a prescription for more antibiotics. When it didn’t clear up I knew something was wrong. Then went to the doctor and tests came back negative for a bladder infection. I was sent to a urologist who said I may have interstitial cystitis. He started DMSO, which after 12 weeks made a 100% improvement for a couple of months and until it came back stronger. My urologist started DMSO again for 12 weeks, and then another 12 weeks when it didn’t work. Finally they tried different cocktails with heparin,etc. I received installations for about a year with no improvement. I then went back to my urologist and he said there was nothing further he could do and that I would have to live with what I had. Luckily, my family doctor did not give up on me and he sent me to see another urologist about 4 hours away in another province. This urologist determined that I definitely had IC and then recommended a sacral nerve implant to help with frequency and urgency. At this point my symptoms had quickly progressed and I was open to all options. I was having pain with urination, stabbing and burning sensations, Urinating every few minutes never feeling like my bladder was empty, as well as extreme pelvic pain. I decided to get the SNI, and it quickly took care of my urgency and frequency problems; however, I still had stabbing and burning sensations as well as extreme pelvic pain. After my interstim (SNI) I was told by urologist #2 that there was nothing else he could do and that this would be my life. I could no longer work, I spent my days lying on the couch in pain all day, nothing was helping. That’s when I decided to take matters into my own hands. I started researching clinical trials online as well as other doctors in the USA that I could see (I’m from Canada). I came across a trial in New York that was being run by Dr. Robert Moldwin. From what I was reading on the internet, he was the one to see. The only problem was that I lived 13 hours away. I asked my insurance company if they could cover the travel and they did for the most part. Dr. Moldwin and his nurse Monica Johnson were life savers. Finally I had found someone who wasn’t willing to give up on me. The team decided I was a candidate for the trial in which a tiny pretzel forming tub filled with lidocaine is inserted into the bladder and left there for 2 weeks. The entire study was 16 weeks and I made more than 10 trips to NYC. Although I found no improvements with the trial, I did find a Dr. that will keep trying treatments until we find something. I finished the trial in June 2014 and then started seeing Dr. Moldwin as a regular patient. It is now September 2014. Dr. Moldwin and his team have determined that I also have pelvic floor dysfunction as well as vulvodynia (two conditions that my urologists in Canada didn’t even look for). Dr Moldwin has come up with several treatment ideas for my doctors in Canada, but the wait times are horrific. What would take 2 weeks in the US takes me up to 2 years here in Canada. And so now I play the waiting game. My interstim has been shocking me lately and has suddenly stopped working entirely. It’s been a year since my last replacement and I have revision
surgery next week to replace it.
Life with IC is a nightmare. I’ve been told that my case is severe and as a result I spend my days stuck lying down all day. Exercising makes things worse, having relations with my husband is painful and I really have to watch what foods I eat. My family and friends have basically forgotten about me, even though I try to be positive around everyone. No one really calls me it visits, and it’s been very stressful and lonely not having people in my life. I’ve been on disability for three years now and some people have the nerve to ask me when I am going back to work, even though my symptoms have progressed. I have tried so many treatment options from oral medication to installations to surgery and nothing has helped, but I will not give up fighting. My advice for anyone reading this who suffers from IC is to not give up and to take matters in your own hands. If you’re hitting roadblocks with doctors, do your research and find a new one. Tell people how you feel and don’t try to cover up what you have. Stay on too of things, you are your best advocate.