Hello everyone,
A reader emailed me her story about interstitial cystitis and how she has learned that it is probably connected to being sexually abused in the past. As you'll see below, she quotes statistics that show that as many as 90 percent of women with IC have been abused in this way. I found her story to be so interesting and I was so impressed with her bravery that I wanted to post it here under my name so others could learn from her. I think the connection between IC and sexual abuse makes complete sense. She is continuing to seek out treatments that will help her and I know that with her courageous attitude she will heal. Here is her post--she and I would both be very interested in your thoughts on what she is going through:
"I have had IC for over 25 years. It first occurred during my freshman semester at college. I started waking up and going to the bathroom several times during the night. It is amazing to me now, to remember that the priest who had abused me during the previous two years was the one who drove me to the doctor. It took me years to put the two together. After researching the best doctors I could find, and trying to understand why I still have this condition, I found a doctor in Baltimore and one in Richmond, VA who both acknowledged that a very high percentage of women who have IC have been sexually abused. It may be as high as 90 percent. Although,I am sharing this with you, it is something I rarely tell anyone. Doctors tend to chuckle about IC and psychological diagnoses. I am a therapist myself, and they even admitted that I was an unusual case in that there was no obvious psychiatric diagnosis. I was actually relieved to find a connection after so many years of suspecting that there was one. I would feel a depressive surge often times when I felt the urge to urinate. Seems really strange, but it continued and (only 25 years later) I found some doctors who had come to the same conclusion and told me how high the percentages were. Now, I am left with a complicated dilemma, trying to heal myself. None of the treatments that are used for IC have helped me much. I wake up after much interrupted sleep, with lower back pain, and burning in my bladder. My case, from what I hear, is probably mild in the whole spectrum of things. I have wondered if I learned a way to forgive, would my bladder heal itself, or is the tissue memory of such abuse able to turn its effects around. I don't know if you have heard any other stories like this. I tend to shy away from a larger group discussion since the rest of my life is good. I have a great husband, children and career. I don't like to focus on the negative and just want to figure out how to heal this, since it's so chronically annoying. Any ideas you have would be greatly appreciated."
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Thank you for sharing this. About two years ago I had been diagnosed with IC, but years before the horrible symtoms started, I had gotten less severe symtoms such as straining only a little to urinate before bed, I had a bunch of urological testing with no clear diagnosis, but was told to see a physical therapist. It wasnt a major issue at the time, besides getting to bed much later, but then one day I was drinking a cold drink and all of a sudden my bladder went into some kind of major spasm and I felt like I was going to be in the bathroom forever. Then my life was turned upside down and I was basically bedridden and lost so much weight and was dehydrated ( I was terrified to just go to the bathroom) a doctor admitted me to the hospital and was worried I was going to die. When I finally got diagnosed, a doctor I saw for treatment asked if I was molested ever-And yes I was by a sibling and neighbor one night (the abuse was only a short occurrence) but I remember how ashamed I felt the next day and slowly became fearful of all men and needed a lot of therapy. So although I dont know if that one time experience was the cause, the emotions after it that I developed probably did have something to do with the development of this condition.
January 28, 2018 - 3:08amThis Comment
honey makes my IC super worse
September 2, 2014 - 6:30pmThis Comment
I think women in general are usually abused. I see no correlation with IC and abuse. I have severe IC and never had sexual abuse
September 2, 2014 - 6:29pmThis Comment
I have IC, HAVE been abused... And find your comments to be insensitive and close minded. Just an FYI.
August 27, 2015 - 4:16amThis Comment
My comment above was towards the person who posted about "women always being abused". Not toward the lovely lady in this article.
August 27, 2015 - 4:19amThis Comment
As I found this post by searching for Tension Myositis Syndrome and childhood sexual abuse, I will forgo any in depth discussion of TMS. I was Dxed with TMS in 1999 after many years of debilitating back pain as well as urinary issues, bad hormonal disturbances resulting in ER visits for bleeding and horrendous weight gain. No matter what I ate or how much I exercised, it just piled on, and doctors simply blamed me for it, even when shown a list of what I was eating. By learning about TMS, I was able to heal from that part, but the other issues continued and worsened. It has only been recently that I was able to connect these things with being raped by a doctor when I was 21 and to previous early childhood sexual abuse by a male babysitter. The brain is an amazing thing and it had "explained" all of it away somehow and repressed it even though previous counselors had been sure it was there somewhere. Through getting with a counselor who is certified to practice EMDR, I was finally able to access the root of the ongoing problems. I am beginning to see some progress in a few areas. I am also going to return to 5 Element Acupuncture since both EMDR and acupuncture can really help the body to let go of the tissue memories.
To everyone out there who shares a similar story, I offer my empathy for what you have gone through and are going through. We are strong, and we can heal, we can even forgive to free ourselves. Wishing the best to you all.
March 5, 2012 - 2:55pmThis Comment
I was diagnosed with IC nearly 15 years ago. I was also told I had a bladder infection, consistently, for years until I found the right doctor. I've noticed that diet, water and low stress levels have been my 'savior' in dealing with the pain. These days, I go in and out of remission but for the most part feel fortunate that it isn't as bad as it was. My reason for writing is that I too was sexually abused as a young child. I was also in a highly emotionally abusive relationship which had ended just before I was diagnosed. This person was also my 1st sexual partner besides my childhood assaults. The correlation between the two, as in the number of people who have experienced sexual abuse and are now IC patients, is staggering.
October 25, 2011 - 1:12pmThis Comment
I just read the comment above and would just like to add that I agree, 90% seems outrageous and I too have never heard of such a high percentage. I also think it is important to not just believe everything you read and that accuracy is extremely important in dealing with this issue. I am in no way claiming that sexual abuse is linked to IC. It does seem as though some sort of trauma is linked but I think we are far off from making this conclusive. Good luck to all.
October 25, 2011 - 1:19pmThis Comment
PLEASE TAKE THE TIME TO READ THIS, THERE HAS BEEN SKEWED/INCORRECT INFORMATION QUOTED ABOVE
Unfortunately, the studies "linking" IC and sexual abuse and their rates to IC patients are NOT more significant than the NATIONAL AVERAGE of abuse both physical and sexual. Please Please do your homework before you take another patient at their word.
I know we all want to believe everything that we tell each other especially since we're usually invalidated for so long by doctors, friends, family ect.
However I have found NO studies that link IC and abuse to 90%. What I DID find was 90 people in the STUDY (NOT 90%!!!!!!!!!!!) had reported abuse. Again, this still is consistent with the national average.
Do your homework before just assuming!!! PLEASE don't perpetuate incorrect information to other IC patients.. we need to all stick together and have ACCURATE information to fight this disease... if there is too many gross in conceptions it perpetuates confusion and we all DESERVE accurate information.
Here is the link to one study which I believe was SEVERELY misquoted here.
http://www.medicalnewstoday.com/articles/123324.php
January 11, 2011 - 2:56pmThis Comment
Anon - Thank you so much for taking the time to research this information, for sharing your thoughts and providing the link to the report from Medical News Today. You are correct, the anecdotal information that is provided earlier in this thread is not validated by this study. The report states that of those surveyed, in this study, the prevalence of sexual abuse from the validated questionnaires was 36%; the prevalence of childhood sexual abuse among the sample was 21% and the prevalence of physical abuse among the sample was 31%.
A key point of the report that is relevant to this thread is the following:
"The larger question to this study is whether abuse leads to the development of IC. This study does not answer the question."
Thank you again for sharing this information.
January 11, 2011 - 5:46pmPat
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