We thought it might be an interesting idea to ask people to share their story about how their IC started-as in, when was the very beggining of the onset of symptoms. Of course, we have heard so many stories over the years. But, if you would like to share what happened to you. Post a story to the response here and it might make for interesting conversation.
Dr. M & B
Comments
This IS interesting! My IC
This IS interesting! My IC "started" with a regular UTI at 27 years old. I'd had them before. Not many but a few. It was diagnosed as a UTI (with a test). I took the usual antibiotics that USUALLY cured my UTI's. This time they didn't. I took round after round of different antibiotics. When my symptoms just kept on going with all the antibiotics, I was sent to a urologist. And so began my desperate search for relief. After many years, 35 different doctors and a toxic load of all kinds of medications, I finally decided that I was going to have to take another path. I worked with a few alternative practitioners who helped me minimally. And then I finally found Dr. Matia...and my true healing started with the first dose of herbs she gave me!!!
Mine started what felt like
Roaccutane!! Mine started what felt like over night nine years ago- I thought it was a UTI (as I had a new sexual partner) but no infection and it kept coming back. I am pretty sure the cause was being on the acne drug Roaccutane that did it (It's criminal its still being given to people!) I had also been on antibiotics in my teens/early twenties so im sure contributed in the overall inbalance.
On a side note a work friend of my sisters was going to go on the drug to have clear skin on her wedding day -my sister told her my story (just so she had all the info) when she told the dermotologist she didnt want it anymore and she was give accupunture a go instead they told her off for wasting their time.
Best wishes x
My IC started one night 5
My IC started one night 5 years ago. I was laying in bed and got what felt like a sharp pain in my bladder. The next day I went to the doctor thinking I had a bladder infection. No bacteria. I spent the next month going between my primary doctor, gynecologist and finally a urologist. He delivered the bad news that I most likely had IC but wouldn’t know for sure without a cystoscopy. Of course, I didn’t know any better and allowed him to do the procedure. What a barbaric procedure! The pain in my bladder was so much worse and I bled for days. My urologist did give me some good advice. He suggested I try to control the symptoms with diet rather than medications or treatment. I spent the next few months researching and becoming more scared and desperate. Eventually my research led me to Boaz and I’ve never looked back. My road to wellness has not been without many bumps but Boaz has been there every step of the way.
I LOVE this everyone!! THANK
I LOVE this everyone!! THANK YOU!!! It would be SOOOO great if more people would provide their stories! We have started an instagram account and we have more stories there! It suddenly occured to me, Boaz and I hear these stories all day long for 22 years. Others need to hear them! And, this is something we will be including in our new videos we will be filming, of course, generally speaking, not divuldging any personal stories unless persmission is specifically given. More people need to know. More education needs to happen. YES treatment is critical but so is education and PREVENTION! We have finally come to the point in our work where we are realizing the best thing we can leave behind is the body of knowledge we have gathered over these years. Thank you, each of you for sharing!! xoxo Dr. M & B
Hi All - this is so
Hi All - this is so interesting! Thanks for those who've shared. I think I've had a weakness in my bladder my whole life. Before age 6, I had 2 "uti"s - idk if they cultured out or not. Then I remember having a terrible day of bladder pain in sixth grade after coming in from ice skating in negative 5 degree weather. Went to the doc, no infection, and then the pain dissipated over a couple of days. My IC went full blown when I was 16 after having intercourse. So, sex has been a trigger for me from the get-go. After many embarrassing tests and hard conversations with my family, I ended up at the urologist. I remember him describing a cystoscopy to me to determine if I had IC. I figured that if the test was negative, he still had no idea what was wrong with me, and if it was positive, he had nothing to offer for help, so I said, "it sounds like this test is more for you than for me." Over the years, my symptoms have gone into remission from time to time. I was relatively symptom free from 18-21 and again from 23-31. Since then, it's been a bit tougher. Last time my IC was triggered was July 26, 2009. I'm sure many of us know the date our life got turned upside down! I'd just gotten off a redeye flight after spending 10 days with a friend who stayed up all hours and chain smoked in the house, so I was exhausted and run down to the point where my poor bod just fell apart.
The biggest gift that IC has given me is better boundaries and learning to really take care of myself and to not be shy about it. I'd rather be healthy than polite! I wish I'd learned that lesson an easier way, but c'est la vie.
Dear Claire-sixth grade - how
Dear Claire-sixth grade - how awful for you. I've spent the last few days trying to sort through my onset of IC symptoms. I just felt that I had to chime in - maybe that's a symptom? : ). I used to have hideaous cramps - nearly killed myselt with aspirin trying to stop the pain. I would have UTI's- some "real" some not. Eventually one very real UTI showed up as drug resistant to all oral antiobiotics. I was told to go to the hospital to start IV antibiotics - scared the hell out of me. The hospital, before starting the IV's, tried what they felt was the last ditch effort for oral treatment - it had cultured back as a possible alternative. I took macrobid for nearly two weeks. The UTI was getting better - I was feeling stranger by the day. HOWEVER, I kept going with the antibiotic, too afraid not to. End result - UTI cured-crazy sick- eventual lung ex ray showing fluid in the lungs. I was given that "look" - one that we probably all know - when I suggested that it was caused by the macrobid. I went home and read the warning labels that I'd received with the drug - something that my doctor didn't seem capable of - and found that once again - I fell into that 2% category. Due to the fact that I was scared to death of a couple of options - a UTI that didn't exist - or a UTI that that had no cure - or a UTI that could be treated with an antibiotic that was going to kill me, I set out to find a better end result. So, now with a full flair, that wasn't going away - probably helped along the way by the macrobid - I launched my search for other answers. Fortunately, for me, they quickly appeared in a late night internet search where I found this site. I held onto the hope that the forum offered me, made my appointment, bought my plane ticket, and mostly ignored well meaning warnings that I was being duped. (I was cynical enough to think that when I arrived at the given address that it might be a burned out gas station) I have never looked back and have never regretted my instincts. Denise
Denise and Claire--Thank you
Denise and Claire--Thank you for sharing your stories!! I LOVE this string of communciation from all! These stories and "those looks" are all too familiar as well, sadly. It reminds me of my own story, which, I will absolutely also tell in more detail at a later time, as I too had all of those looks of doubt and judgment. I was bron with birth defects of my Kidneys that were not discovered until I was 24 years old after a life time of this being wrong and that and being told I was an emotional kid. It's so interesting that so much is blamed upon the emotions, as if having an emotional response to being unwell is not an obvious reaction. I had raging headaches as a kid (in Chinese medicine there is a correaltion between the Kidney issue and the raging headaches) and got CAT scans and tests up the wazoo and was told I was "normal". Hmmm. I was overly vaccinated and given a mass of antibiotics for the chronic throat infections I had (also related to the Kidneys) and became less and less well over timewith more throat infections and yeast infections, sensitivites to birth control pills (in retrospect thank god!) until a medication I as given in my early 20's almost made me bleed to death and then an ultrasound uncovered my Kindey issue. This was the beginning of my "end", or was it my beginning. I choose beginning as I would never be the person I am now without having had all of that happen. All of that which stole my young and thriving years. It stole away all of the dating and "partying" all the wild years. But, I was never one for all of that, so I don't really look at it as a loss. Life is a journey, and this was mine. I don't feel bitter, I feel grateful in some ironic way. I will tell my whole story which is so very long another time. It does not seem right in the context of this chain, but it did occur to me, I should chime in here since everyone has been so gracious as to share theirs. I would love more as I am certain many others would. Dr.M
You speak of your journey -
You speak of your journey - maybe that some good, or insight has come from it all? That might be an interesting thread, what has our journey both taken from us, and possibly given to us?......just a thougtht - Denise
This is something I love to
This is something I love to discuss with people! Often though, I think it is difficult for some, so I am careful with whom I bring it up. I often refer to all of this as a gift because I think of all things that have changed because of it. Not in my own life only, but in the lives of everyone. For all that has happened, so much as been prevented. To me, life is more beautiful when one looks at the upside of the circumstances that have been difficult. Of course, there are tragic circumstances in which this is an impossibility. I am not so naive to think otherwise. But, even with all of the suffering a condition like IC causes, my feeling is that there are gifts within. Thise are the things to reach for and I believe that they, in turn, fill the heart with an energy that creates more positive energy and so on.
My Ic - I had a lot of ear
My Ic - I had a lot of ear infections before I turned 5 and had lots of antibiotics and then ear tubes . I had really no issues until university under stress I guess I developed lactose intolerance took I while to figure this out . I then started birth control pills when I got married. Frequent yeast infections & first time in my life UTI’s twice a year which antibiotics fixed . Then I decided to try with the advice of a nurse practitioner depo provera I had 3 injections over a 9 mos period . I started feeling like I had a uti for a day or so then better - I took cipro & bang ! Severe bladder pain for months . It went from there - got pregnant with my 3 rd child in the midst of this - had her and about 2 years after found Matia. I never abused my body never ate bad . Had some electrolysis to my upper lip at this time - I guess this never helps either . I have learned a lot & I am thankful for the help I have received. I could add all the frustration & some treatments and doctors before bomamed but we will leave that out ....
Thank you Jeanne for your
Thank you Jeanne for your story! This too is a common story! The ear infections and the treatments for them. The Depoprvera brings up a very very important issue! Hormonal birth control! In our opinion, it is so awful in all forms. If one would look up the side effects of every hormonal birth control pill listed side effects inclue bladder problems and yeast infections. Depoprovera is incredibly awful as it is progesterone which is absolutely antagonistic to inflammation in the body, which results in an enormous negative response with IC. This is something we can help other young women with and our own children. Say NO to hormonal birth control!