Interstitial Cystitis/Painful Bladder Syndrome is a urinary bladder disease that causes chronic inflammation of the bladder wall lining. The inflammation causes pain, urinary frequency, urgency and pressure in the bladder and surrounding pelvic region. The origin of IC/PBS is still unknown; the Interstitial Cystitis Network states that “various research studies have explored the possibility that infection, epithelial links, epithelial permeability, mast cells, heredity and neuroinflammation may play a role in IC but, to date, there is no single cause that we can attribute to causing IC in ALL patients. Rather, it may be that IC has several different variations.”
I know a lot about IC because I suffered from it for years. In my case, I believe it originally developed as a result of trauma to my bladder from a catheter that was forcibly inserted during cholecystectomy (gallbladder) surgery in 1997. Within a year, I experienced a kidney infection followed by a cycle of recurrent urinary tract infections. This was unusual because I had not had a urinary tract infection since I was in my early teens. The infections usually cleared up with a course of antibiotics, but even when the infections were not active, I was still experiencing pain, pressure, urinary frequency and urgency. I spent a lot of time in the bathroom or at the urologist’s office.
In 1999, I had exploratory surgery performed on my bladder to pinpoint the cause of my symptoms. I was diagnosed with neurogenic bladder and a congenital urethral stenosis, which was corrected with surgery. However, neither of those conditions – which I had had my entire life – were causing the majority of my symptoms. The cystoscopy/hydrodistention (procedure to examine the bladder wall lining and stretch the membrane) was inconclusive, despite obvious signs of chronic inflammation.
It took nearly four years before I was properly diagnosed with IC and by then, I was experiencing regular and near-debilitating flare-ups that were interfering with my ability to live a normal life. I was fortunate to have a job that allowed me to telecommute when I needed to because the level of discomfort, lack of sleep and perpetual bathroom trips made it difficult for me to function when I was in the middle of a flare-up. The resulting inflammation from IC also caused gynecological problems, since the pelvic region shares similar nerve pathways and tissue structure. It was a very difficult, painful and depressing period of my life.
In 2003, I finally found a urologist who felt certain, as I did, that I was living with IC. I began medical treatment (Elmiron, Elavil, Urised and Detrol) as well as a modified diet, because certain food and drink can irritate the bladder. Over time, I did see improvement in my symptoms, but I still dealt with occasional flare-ups, as well as the unpleasant side effects from the medications themselves. Still, after being in pain for years, I was grateful for any relief. I had been taking the medications about three years when I went on a business trip to India at the beginning of 2006 for two weeks. This was actually my third trip there (and we won’t talk about what it’s like to have a bladder condition and have to fly halfway around the world) but this time was different. I experienced energy healing for the first time and it was what led me to Reiki.
The energy healing I received that day actually eliminated my neck and shoulder pain from the long flight, which was my immediate concern. It was such a remarkable experience that once I returned to the U.S., I immediately sought out someone to train me in energy healing. It totally changed my perspective on what “healing” means. The interesting thing was, after practicing Reiki for a while, I realized that my bladder wasn’t bothering me at all. I had weaned down my medications around the time I went to India because I was seeing improvement and was concerned about my liver enzyme levels, but still took a maintenance dosage. So, I decided to wean myself off to see what would happen. Days, then weeks went by. I felt fine. I haven’t taken any medication since.
I got pregnant in the summer of 2006 and aside from the normal discomforts associated with pregnancy, had few issues with my bladder. I was concerned that after my pregnancy, all of my IC symptoms would come back full force – and they didn’t. The true testament of my healing revealed itself after my emergency c-section. I was catheterized for a week due to post-surgical complications, but still experienced no bladder-related issues. I do have some pelvic floor tightness that pops up from time to time but that is likely a residual issue from the surgery, and is alleviated with regular chiropractic adjustments and yoga. Every now and then, I’ll have a day where my bladder is irritated for some reason, but it is mildly annoying and resolves by the next day. The other thing that I should mention is that the vulvodynia I was also experiencing is no longer active either.
The site owners of Healthy IC Recipes invited me to write an article on Reiki, entitled Spiritual Healing Through Reiki. Writing the article is what inspired me to tell my story in more detail. It meant a lot to me to be able to share how energy healing can be beneficial for people living with chronic health conditions like IC. Our bodies are capable of healing themselves, but often need some assistance with the process. Reiki is a gentle, effective complementary therapy that can help people manage their symptoms, improve the quality of their life and in some cases, faciliate much deeper healing.
Please contact me if you would like to learn more about how Reiki can help you on your healing journey.
June 14th, 2010 at 2:13 pm
Thank you for your story. I have had some pressure and odd feeling in my bladder for about a month now. I went on the internet to find an answer because doctors found no bacteria or kidney stones. I bumped into the IC Network webpage and immediately freaked out when I read the stories of people having to live with this for the rest of their lives.
I thought to myself that I could probably have this so I haven’t been visiting the Network anymore because I find it fills my brain up with negative ideas.
I am having Reiki sessions every week now and am going to the homeopath also, we’ll see what happens.
Anyway, I am posting a reply because I feel that your story is helpful and inspiring and it would be nice if you could give this kind of hope to the women and men in the IC-Network.
Thank you.
June 15th, 2010 at 11:29 am
Hi Louise,
Thank you for your comments regarding my story, as well as sharing your experience.
While it is possible you could have an inflammatory issue with your bladder that are producing symptoms consistent with IC, there are other pelvic pain conditions that cause similar symptoms, including pelvic floor dysfunction and vulvodynia. I would recommend that you partner with a urologist experienced in women’s urinary issues or a urogynecologist to rule out any other possible issues.
In the meantime, I am sure you will receive some benefit from Reiki and homeopathy – I’m glad to hear you are taking some steps to get some relief and find out what works for your body’s needs.
I do have a presence on the IC Network boards and have shared my experience with healing my IC symptoms with Reiki. I am careful, however, to not come across as if I am trying to “sell” my services.
I have had several clients with IC and pelvic issues who say the Reiki sessions they’ve received from me do help alleviate their discomfort. I’m grateful to have the opportunity to assist these clients, because I remember how frustrated and isolated I felt years ago before people knew a lot about IC and there were fewer options for treatment or alleviation of symptoms.
Regards,
Dana
September 16th, 2010 at 10:12 pm
Thank you for your article. I have had IC for about 2 years and it has improved tremendously, thanks to a combo of supplements and therapy.
I have been interested in trying Reiki for a while and this post has inspired me to find a healer in my area.
Also, I must put in my 2c about the IC Network. I found that going there was REALLY bad for my well being and made me feel hopeless. The mods and regulars there are often cliquish and I saw them (on multiple occasions) gang up on women they disagreed with who were NOT being combative at all. Also, women asking if it will get better are often given “worst case scenario” answers which are unnecessarily fearmongering. I mean really, there are over 100,000 posts on that board and only TWO in the “Feeling Better” section…how depressing is that?
I caution others with IC to take the site with a grain of salt as they are in the BUSINESS of selling IC related items. IMO, any support network with a STORE attached should be viewed with a healthy dose of skepticism. And to all of you suffering from IC…take hope, IT CAN GET BETTER. Good Luck.
September 16th, 2010 at 10:54 pm
Hi NYCat,
Thank you for your comments. Are you in the NYC area? If so, you should be able to find a qualified Reiki practitioner without too much difficulty. In fact, I know several and can refer to you privately if you wish.
Many message boards devoted to an illness or chronic condition tend to dwell on the negative aspects, since people are suffering and that’s their reality. I learned a lot from the IC Network boards that helped me understand and begin to manage the symptoms I was experiencing.
The clinical stance is that there is no “cure” for IC. This is categorically true. There is no drug or treatment that absolutely cures it. However, I am also living proof that the body is quite capable of healing itself. Reiki helped facilitate that process. Everyone’s healing journey is different, and Reiki may help some people more than others to alleviate symptoms and restore well-being and improved quality of life.
I do agree with you; it can get better.
Warm regards,
Dana
January 24th, 2011 at 12:32 pm
i am w NYCat- women on the IC Network claim not to be giving medical advice, but they do- and they make everyone feel worse. i have had very bad experiences on that website and will NEVER go back. the reason i am writing, though, is bec i really enjoyed reading about your story- i am a true believer in healing- the body heals, we just have to find different ways that work for us. i am currently doing acupuncture- and it hasnt really worked- but then again, it’s only been 3 weeks. i hope to find more inspiration through reiki. thanks for sharing your story and giving us some hope. x
January 26th, 2011 at 2:25 pm
Thank you for your message and good words. I’m glad to hear that my story resonated with you. I hope acupuncture will be helpful (and like you noted, it can take time for the body to regain its energetic balance) but also remember that sometimes we need a combination of two or more wellness approaches to help the body kickstart its healing process. With IC that approach could be something along these lines: following the IC diet, and adding in energy work, bodywork or other mindfulness practices, such as meditation.
I’m sorry that the IC Network site wasn’t of more help or support to you. I learned as much as I could about the disease and what treatments were available from the people and information on the site, and then went my own way. I’m glad they were there for the time that I needed to get much-needed information that was not so readily available (even from my urologist!) but it’s unfortunate that those looking for a more positive wellness approach to managing and alleviating symptoms aren’t finding it.
Please keep me informed as to your progress and let me know if I can be of assistance. I have not forgotten what it was like to live with IC. I do distance Reiki work for those who would like to receive very affordable treatment in the comfort of their own home!
Warm regards,
Dana
October 26th, 2011 at 8:01 pm
Hi I have been diagnosed with IC and or pudenal nerve damage. After 14 yrs of severe pain I would like to try Reiki as I want my life back and doctors have been of no help. Please email me if you know of a reputable practitioner in Oshawa Ontario. Tks