emilyjean
01-13-2009, 08:27 AM
I just posted this post up in the 'remission' section of the forum. But I just realized this might be a better place for it? I don't want to upset anyone by the brevity of what's helped me with my overlapping conditions. I know all these conditions are complicated and require a lot of research and care. I just hope to help somehow, cause many of you have helped me get to the good place I'm at now!
I’m surprised that already tons of people are reading my post about how I finally found relief from severe IC. I thought I’d add some more detail about what’s helped me. To help other sufferers as much as I can.
I wanted to add that, along with relief from IC, I've also found relief from my overlapping conditions of IBS, chronic fatigue, vestibulitis, depression, and pelvic floor dysfunction. Here’s what’s working for me:
1. I have good team of doctors that work together. I have a primary doctor, pain specialist, acupuncturist, and physical therapist that all work together and know a lot about IC and how it relates to other illnesses.
I like how the physical therapy and acupuncture most likely CAN’T hurt me (unlike pain meds and surgery, both of which I tried and made my condition worse in the long run). The physical therapy and acupuncture have given me long- term results with IC and my overlapping conditions.
(I’ve bad luck with urologists. They recommended several urethral dilations, and interstim right away before trying less expensive and invasive treatments. I was given a urethral dilation the day before my cystoscopy with hydrodistention, which makes no sense. And the day of my cystoscopy my urologist cut me deeply around the urethra in a very odd place to supposedly ‘help with my symptoms’. I was also told to get a DSMO the week after I had a cystoscopy with hydrodistention, which I’ve read can be very dangerous. When I asked my urologist for a prescription of an antihistamine, cause I read it might help, he said that it isn’t a treatment for IC and that he didn’t know how to write a prescription for an antihistamine.
From theses horrible experiences, I learned to always get a 2nd opinion. before doing expensive surgery or treatments. I also like how the pain specialist and primary care doctors know how everything in the body works together instead of specializing in just one area of the body. They seem to have a more holistic approach on how things work in the body. )
2. I learned that my IBS was a misdiagnosis. I actually had leaky gut syndrome. Which means, that the lining of your gut is ‘leaky’ and not properly working. IF I didn’t fix my leaky gut and it’s malabsorbtion problem, I would suffer from MORE overlapping conditions in the future because my body wasn’t absorbing nutrients properly.
Here’s what fixed all my ‘IBS” (in actuality leak gut) and chronic fatigue symptoms: probiotics, fish oil, a gut repair supplement, anti inflammatory supplement., and nystatin or diflucan for yeast. Also I did an elimination diet and discovered I’m allergic to milk, soy, nuts, and wheat. Going off those foods took care of my horrible stomach symptoms!
3. To heal my depression, I needed pain management (acupuncture, physical therapy, and the meds Lyrica and Flexeril).
I also saw a psychiatrist for Post Traumatic Stress Disorder, which he said came from the trauma of the IC pain, fatigue, loss of work, loss of friends, and loss of quality of life from my illnesses.
And I’m taking fish oil, which helps with inflammation and depression
4. For the vestibulitis: physical therapy, TENS unit, ultra sound, Lyrica for the nerve pain, fish oil, and aloe.
5. For the pelvic floor dysfunction; (which was aggravating all my symptoms) No straining ever, PT (ultrasound, interferential stimulator, myofacial release, and soft tissue massage), pelvic floor exercises (after you’ve calmed the tension down with internal myfacial work and Flexeril.)
6. Chronic fatigue; (fix leaky gut problems, make sure your gut is absorbing nutrients, calm inflammation with fish oil, take benadryl to get a good nights sleep and as an effective antihistamine, and eat mostly vegetables, fruit, brown rice, chicken, and fish. I can’t eat a lot of sugar, processed foods, and red meat. I can’t eat wheat or dairy. If I do the fatigue and ‘IBS’ symptoms will come back.) I also, per doctor request, switched to all natural beauty products and cleaning products, to avoid chemicals that increased my inflammation which in turn increased the pain and fatigue.
Every individual case is different. This isn’t medical advice, just what’s worked so well for me. Hope it helps! (Check with your Dr. before you try any new diet or treatment.) Good luck! I know this can be very difficult. It took me years to figure out all how all this worked together. I had to see quite a few doctors. I had to do a lot of research and ask a lot of questions on these support forums to figure this all out.
I’m surprised that already tons of people are reading my post about how I finally found relief from severe IC. I thought I’d add some more detail about what’s helped me. To help other sufferers as much as I can.
I wanted to add that, along with relief from IC, I've also found relief from my overlapping conditions of IBS, chronic fatigue, vestibulitis, depression, and pelvic floor dysfunction. Here’s what’s working for me:
1. I have good team of doctors that work together. I have a primary doctor, pain specialist, acupuncturist, and physical therapist that all work together and know a lot about IC and how it relates to other illnesses.
I like how the physical therapy and acupuncture most likely CAN’T hurt me (unlike pain meds and surgery, both of which I tried and made my condition worse in the long run). The physical therapy and acupuncture have given me long- term results with IC and my overlapping conditions.
(I’ve bad luck with urologists. They recommended several urethral dilations, and interstim right away before trying less expensive and invasive treatments. I was given a urethral dilation the day before my cystoscopy with hydrodistention, which makes no sense. And the day of my cystoscopy my urologist cut me deeply around the urethra in a very odd place to supposedly ‘help with my symptoms’. I was also told to get a DSMO the week after I had a cystoscopy with hydrodistention, which I’ve read can be very dangerous. When I asked my urologist for a prescription of an antihistamine, cause I read it might help, he said that it isn’t a treatment for IC and that he didn’t know how to write a prescription for an antihistamine.
From theses horrible experiences, I learned to always get a 2nd opinion. before doing expensive surgery or treatments. I also like how the pain specialist and primary care doctors know how everything in the body works together instead of specializing in just one area of the body. They seem to have a more holistic approach on how things work in the body. )
2. I learned that my IBS was a misdiagnosis. I actually had leaky gut syndrome. Which means, that the lining of your gut is ‘leaky’ and not properly working. IF I didn’t fix my leaky gut and it’s malabsorbtion problem, I would suffer from MORE overlapping conditions in the future because my body wasn’t absorbing nutrients properly.
Here’s what fixed all my ‘IBS” (in actuality leak gut) and chronic fatigue symptoms: probiotics, fish oil, a gut repair supplement, anti inflammatory supplement., and nystatin or diflucan for yeast. Also I did an elimination diet and discovered I’m allergic to milk, soy, nuts, and wheat. Going off those foods took care of my horrible stomach symptoms!
3. To heal my depression, I needed pain management (acupuncture, physical therapy, and the meds Lyrica and Flexeril).
I also saw a psychiatrist for Post Traumatic Stress Disorder, which he said came from the trauma of the IC pain, fatigue, loss of work, loss of friends, and loss of quality of life from my illnesses.
And I’m taking fish oil, which helps with inflammation and depression
4. For the vestibulitis: physical therapy, TENS unit, ultra sound, Lyrica for the nerve pain, fish oil, and aloe.
5. For the pelvic floor dysfunction; (which was aggravating all my symptoms) No straining ever, PT (ultrasound, interferential stimulator, myofacial release, and soft tissue massage), pelvic floor exercises (after you’ve calmed the tension down with internal myfacial work and Flexeril.)
6. Chronic fatigue; (fix leaky gut problems, make sure your gut is absorbing nutrients, calm inflammation with fish oil, take benadryl to get a good nights sleep and as an effective antihistamine, and eat mostly vegetables, fruit, brown rice, chicken, and fish. I can’t eat a lot of sugar, processed foods, and red meat. I can’t eat wheat or dairy. If I do the fatigue and ‘IBS’ symptoms will come back.) I also, per doctor request, switched to all natural beauty products and cleaning products, to avoid chemicals that increased my inflammation which in turn increased the pain and fatigue.
Every individual case is different. This isn’t medical advice, just what’s worked so well for me. Hope it helps! (Check with your Dr. before you try any new diet or treatment.) Good luck! I know this can be very difficult. It took me years to figure out all how all this worked together. I had to see quite a few doctors. I had to do a lot of research and ask a lot of questions on these support forums to figure this all out.