100% Healed from IC for 1.5 Years

C

CGP

Peer Supporter
Hi There,

I commented on another post about being healed from IC, and was asked to post here - I hope this helps someone. When I was hurting, there were very few success stories out there and TONS of horror stories, especially on IC message boards.

I had major pain right after I got married. It happened after I had a UTI on our honeymoon. The UTI cleared right away with antibiotics, but the pain stayed, and got worse the more I learned about IC and began panicking. I did have emotional issues with getting married, because my family is on the opposite side of the country and my husband doesn't want to move, so my wedding came with a lot of mixed feelings.

I saw every kind of doctor for the pain (obgyn, urologist, 2 naturopaths, general practitioner, acupuncturist, pelvic floor therapist, psychologist, psychiatrist, hypnotist, LEAP dietician... everything.) There were so many articles and so many suggestions related to diet, procedures and everything else, that I felt an immense overload and didn't know what advice to follow, or where to begin - I felt like no matter what I did, I wasn't taking enough information into account. I have doctors in my family, so turning my back on all medical advice felt counter-intuitive. I finally sat down, with all of the information I had gathered over 8-10 months, and made a plan.

Here is what finally worked - I have been 1.5 years IC-free now.

The "IC is Stupid" Plan for TMS Healing
  1. Read about TMS. I read The Mindbody Prescription & Unlearn Your Pain, to learn about TMS, and also loved Mind Over Medicine by Dr. Lissa Rankin. I immediately stopped reading all IC boards, stopped all diets and supplements and visiting doctors. I stopped obsessing over how my IC might compare to other people's IC - how I/they were diagnosed, whether they had ulcers or scar tissue etc. etc. etc. Details don't matter: this was not something wrong with my body. It made perfect sense.

  2. Grow a backbone. I decided to stop being a helpless puddle of a person. While not the nicest, I began to do this by taking on a judgmental mindset about others who weren’t healing from IC. I armchair speculated about the people on IC message boards - I noticed that a lot of the them were very dismissive of mind/body solutions, always followed doctor’s orders to the letter and defended their surgeries and prescriptions... many were almost bragging about their pain, symptoms and surgeries, and some had had the symptoms for 40 years. By doing this, I mentally distanced myself from those people and began to believe I could be different. I could see all the ways these people were giving power to their pain.

    I also had some conversations with my husband about specific issues - personal things that were causing some of my internal conflict.

  3. Create a Proof Sheet. This was a list in my phone of reasons why I was optimistic about my IC actually being TMS, and it became my main point of focus as I healed. It started with other people’s success stories, Schubiner, Sarno and Steve O quotes, and other things that supported my thoughts. As I noticed the pain moving or disappearing at times, I built my case by adding TMS-ey instances to the list. (For instance: Why did my pain turn to tailbone pain for a second when we walked the dog? Why did it go away when I took a Xanax or drank red wine? Why doesn't it bother me as much when I'm at home for Christmas?)

    As I repeatedly consulted and added to my list, I got to a place where I 100% unequivocally believed it was in my head and NOT physical. I had an enormous amount of proof.

  4. Enjoy Life. Find a few things to be extremely excited about and run toward, to fill the time you are no longer going to spend worrying. For me it was planning a trip to Miami, beginning art school, and making & decorating delicious acai bowls every morning (I was really into copying this instagram: @alphafoodie). It sounds dumb, but I really focused hard on these things, and all things fun and funny, completely ignoring all fear and physical sensations. Fear is gasoline on the fire, fun is like a fire hose. I thought a lot of my mom, who is the funnest person ever and always having a good time, never worrying. I tried to think WWMD (What Would Mom Do?).

  5. See a TMS specialist. I was about 80% of the way there, but I still noticed twinges of pain sometimes. I met with a TMS doctor in Chicago, Dr. Stracks, and after he confirmed I was a classic TMS case (not even needing to hear details of my symptoms), my IC symptoms never returned. I was literally cured the second I left his office. I think I needed final final confirmation from a respected, real doctor who knew about TMS.
I have had other symptoms pop up since then, but am able to shut them down by modifying and using these steps. I e-mailed Dr. Stracks recently about a skin symptom I was having a few days ago, and after receiving confirmation that it had a TMS connection, I was able to actually stop it from happening with my mind. Now I know it is also a stupid, fake thing I have complete control over.

If I had one more thing to suggest, it would be to find and use a guided meditation or EFT/Tapping script about befriending your body. I found a great one on TheTappingSolution.com here that has helped me make some breakthroughs. It can help to actually tell my body that we are on the same team. This meditation is great when you are having a meltdown and want to turn on your parasympathetic nervous system and just relax. I try to maintain and re-balance by doing one of these, or TM, most days.

I sincerely hope this helps some of you out there! You will get through this. Remember: it's just your brain being stupid.

xx
Claire
 
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Thank you so much Claire! I think that one of the most important parts of your plan is doing and planning things that one enjoys! Making plans, looking forward to something positive that is future oriented is urgently needed in a situation were we are scrutinizing our souls and sometimes feel captured in the negativity of our past. I fully agree, I always felt best when I were very active, like last January when I moved to a new house.
Thanks again, I think you insights will help a lot of people here, not only them with bladder issues.
Best
Pernille
 
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Oh, Claire - so many great things to love about your story - Thank You!!!
Here are my favorites:
CGP said:
I stopped obsessing over how my IC might compare to other people's IC - how I/they were diagnosed, whether they had ulcers or scar tissue etc. etc. etc. Details don't matter
Click to expand...
CGP said:
I mentally distanced myself from those people and began to believe I could be different. I could see all the ways these people were giving power to their pain.
Click to expand...
CGP said:
...fill the time you are no longer going to spend worrying.
Click to expand...
CGP said:
Remember: it's just your brain being stupid.
Click to expand...

Cheers!
~Jan
 
ThAnk you. I’m a new member here. Where do I get these books please. I’ve suffered too long for stupid reasons now. Deb.
 
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Deb, welcome, and I hope you can find relief here - we're all in this together!

All of the books or audio programs mentioned here can be purchased on Amazon, although I have also been able to check out many of them at my local library to start with.

Our site is devoted to, and in honor of, the brilliant work and theories of Dr. John Sarno, MD, who wrote four books. My favorite is
The Divided Mind which is Dr. Sarno's last book. What I like is that he presents his theories very efficiently in four chapters, and turns the book over to five other MDs and a therapist, who discuss other aspects about mind-body conditions in six additional chapters. I checked this book out from my library (then I bought my own copy, then I gave that away, then I had to buy it again).

For your anxiety, you can't do better than Hope & Help For Your Nerves, which is a little book written in 1963 (55 years ago!) by Dr. Claire Weekes, an Australian psychologist. Her soothing no-nonsense advice has saved thousands of people all over the world, from crippling anxiety. There are also numerous audio programs by her that you can find online.

Claire mentioned above, Mind Over Medicine by Dr. Lissa Rankin, MD. If you put Lissa Rankin into our search box (ignore the API error message and choose the tab "results from our forum") you will find lots of posts about her books and videos, and links to where to find them - although Amazon has them, of course. She also has a web site.

Once you've read one or two books about TMS (Dr. Sarno's term) and mind-body disorders in general, you'll be ready to do one of the free programs we offer here.

Good luck, Deb - we're pulling for you!

~Jan
 
Thank you. So start with Dr. Sarno’s book first then. That’s is what you are saying to do. I’ll buy it on Amazon tonight then. If that’s what I should do first. Thank you please advise. I also have Pudendal neuralgia they go hand in hand I’m assuming this will do the job for both. Thank you again for the reply. Deb
 
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Sophia15 said:
Thank you. So start with Dr. Sarno’s book first then. That’s is what you are saying to do. I’ll buy it on Amazon tonight then. If that’s what I should do first. Thank you please advise. I also have Pudendal neuralgia they go hand in hand I’m assuming this will do the job for both. Thank you again for the reply. Deb
Click to expand...
Thank you Jan.
 
Details do not matter! Loved this, thanks!!!
I am such a storyteller. Can use the gift in so many other, less destructive ways!!
 
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Came back to post one more awesome book recommendation: The Untethered Soul by Michael A. Singer.

My favorite chapters are 7 & 8 - what it boils down to is that we all should try to live our lives with open hearts, and don't allow our hearts to close when we are faced with difficulties - this is what separates happy/flowing/healthy/balanced people from sick/sad/stressed/depressed people. It is a simple, single habit to learn that makes a huge difference. The more we learn to "stay open" and keep from "closing", the easier it becomes to remain open, and the happier we become. It really, truly has made me a happier person since I started using this technique. It is a little like meditation.

I hope this helps someone!
 
I just listened to a podcast interview with the author of the untethered soul. there were a lot
of golden nuggets in that interview. thanks for your list of action steps you took. i found it inspiring!
 
CGP said:
Hi There,

I commented on another post about being healed from IC, and was asked to post here - I hope this helps someone. When I was hurting, there were very few success stories out there and TONS of horror stories, especially on IC message boards.

I had major pain right after I got married. It happened after I had a UTI on our honeymoon. The UTI cleared right away with antibiotics, but the pain stayed, and got worse the more I learned about IC and began panicking. I did have emotional issues with getting married, because my family is on the opposite side of the country and my husband doesn't want to move, so my wedding came with a lot of mixed feelings.

I saw every kind of doctor for the pain (obgyn, urologist, 2 naturopaths, general practitioner, acupuncturist, pelvic floor therapist, psychologist, psychiatrist, hypnotist, LEAP dietician... everything.) There were so many articles and so many suggestions related to diet, procedures and everything else, that I felt an immense overload and didn't know what advice to follow, or where to begin - I felt like no matter what I did, I wasn't taking enough information into account. I have doctors in my family, so turning my back on all medical advice felt counter-intuitive. I finally sat down, with all of the information I had gathered over 8-10 months, and made a plan.

Here is what finally worked - I have been 1.5 years IC-free now.

The "IC is Stupid" Plan for TMS Healing
  1. Read about TMS. I read The Mindbody Prescription & Unlearn Your Pain, to learn about TMS, and also loved Mind Over Medicine by Dr. Lissa Rankin. I immediately stopped reading all IC boards, stopped all diets and supplements and visiting doctors. I stopped obsessing over how my IC might compare to other people's IC - how I/they were diagnosed, whether they had ulcers or scar tissue etc. etc. etc. Details don't matter: this was not something wrong with my body. It made perfect sense.

  2. Grow a backbone. I decided to stop being a helpless puddle of a person. While not the nicest, I began to do this by taking on a judgmental mindset about others who weren’t healing from IC. I armchair speculated about the people on IC message boards - I noticed that a lot of the them were very dismissive of mind/body solutions, always followed doctor’s orders to the letter and defended their surgeries and prescriptions... many were almost bragging about their pain, symptoms and surgeries, and some had had the symptoms for 40 years. By doing this, I mentally distanced myself from those people and began to believe I could be different. I could see all the ways these people were giving power to their pain.

    I also had some conversations with my husband about specific issues - personal things that were causing some of my internal conflict.

  3. Create a Proof Sheet. This was a list in my phone of reasons why I was optimistic about my IC actually being TMS, and it became my main point of focus as I healed. It started with other people’s success stories, Schubiner, Sarno and Steve O quotes, and other things that supported my thoughts. As I noticed the pain moving or disappearing at times, I built my case by adding TMS-ey instances to the list. (For instance: Why did my pain turn to tailbone pain for a second when we walked the dog? Why did it go away when I took a Xanax or drank red wine? Why doesn't it bother me as much when I'm at home for Christmas?)

    As I repeatedly consulted and added to my list, I got to a place where I 100% unequivocally believed it was in my head and NOT physical. I had an enormous amount of proof.

  4. Enjoy Life. Find a few things to be extremely excited about and run toward, to fill the time you are no longer going to spend worrying. For me it was planning a trip to Miami, beginning art school, and making & decorating delicious acai bowls every morning (I was really into copying this instagram: @alphafoodie). It sounds dumb, but I really focused hard on these things, and all things fun and funny, completely ignoring all fear and physical sensations. Fear is gasoline on the fire, fun is like a fire hose. I thought a lot of my mom, who is the funnest person ever and always having a good time, never worrying. I tried to think WWMD (What Would Mom Do?).

  5. See a TMS specialist. I was about 80% of the way there, but I still noticed twinges of pain sometimes. I met with a TMS doctor in Chicago, Dr. Stracks, and after he confirmed I was a classic TMS case (not even needing to hear details of my symptoms), my IC symptoms never returned. I was literally cured the second I left his office. I think I needed final final confirmation from a respected, real doctor who knew about TMS.
I have had other symptoms pop up since then, but am able to shut them down by modifying and using these steps. I e-mailed Dr. Stracks recently about a skin symptom I was having a few days ago, and after receiving confirmation that it had a TMS connection, I was able to actually stop it from happening with my mind. Now I know it is also a stupid, fake thing I have complete control over.

If I had one more thing to suggest, it would be to find and use a guided meditation or EFT/Tapping script about befriending your body. I found a great one on TheTappingSolution.com here that has helped me make some breakthroughs. It can help to actually tell my body that we are on the same team. This meditation is great when you are having a meltdown and want to turn on your parasympathetic nervous system and just relax. I try to maintain and re-balance by doing one of these, or TM, most days.

I sincerely hope this helps some of you out there! You will get through this. Remember: it's just your brain being stupid.

xx
Claire
Click to expand...
scx
CGP said:
Hi There,

I commented on another post about being healed from IC, and was asked to post here - I hope this helps someone. When I was hurting, there were very few success stories out there and TONS of horror stories, especially on IC message boards.

I had major pain right after I got married. It happened after I had a UTI on our honeymoon. The UTI cleared right away with antibiotics, but the pain stayed, and got worse the more I learned about IC and began panicking. I did have emotional issues with getting married, because my family is on the opposite side of the country and my husband doesn't want to move, so my wedding came with a lot of mixed feelings.

I saw every kind of doctor for the pain (obgyn, urologist, 2 naturopaths, general practitioner, acupuncturist, pelvic floor therapist, psychologist, psychiatrist, hypnotist, LEAP dietician... everything.) There were so many articles and so many suggestions related to diet, procedures and everything else, that I felt an immense overload and didn't know what advice to follow, or where to begin - I felt like no matter what I did, I wasn't taking enough information into account. I have doctors in my family, so turning my back on all medical advice felt counter-intuitive. I finally sat down, with all of the information I had gathered over 8-10 months, and made a plan.

Here is what finally worked - I have been 1.5 years IC-free now.

The "IC is Stupid" Plan for TMS Healing
  1. Read about TMS. I read The Mindbody Prescription & Unlearn Your Pain, to learn about TMS, and also loved Mind Over Medicine by Dr. Lissa Rankin. I immediately stopped reading all IC boards, stopped all diets and supplements and visiting doctors. I stopped obsessing over how my IC might compare to other people's IC - how I/they were diagnosed, whether they had ulcers or scar tissue etc. etc. etc. Details don't matter: this was not something wrong with my body. It made perfect sense.

  2. Grow a backbone. I decided to stop being a helpless puddle of a person. While not the nicest, I began to do this by taking on a judgmental mindset about others who weren’t healing from IC. I armchair speculated about the people on IC message boards - I noticed that a lot of the them were very dismissive of mind/body solutions, always followed doctor’s orders to the letter and defended their surgeries and prescriptions... many were almost bragging about their pain, symptoms and surgeries, and some had had the symptoms for 40 years. By doing this, I mentally distanced myself from those people and began to believe I could be different. I could see all the ways these people were giving power to their pain.

    I also had some conversations with my husband about specific issues - personal things that were causing some of my internal conflict.

  3. Create a Proof Sheet. This was a list in my phone of reasons why I was optimistic about my IC actually being TMS, and it became my main point of focus as I healed. It started with other people’s success stories, Schubiner, Sarno and Steve O quotes, and other things that supported my thoughts. As I noticed the pain moving or disappearing at times, I built my case by adding TMS-ey instances to the list. (For instance: Why did my pain turn to tailbone pain for a second when we walked the dog? Why did it go away when I took a Xanax or drank red wine? Why doesn't it bother me as much when I'm at home for Christmas?)

    As I repeatedly consulted and added to my list, I got to a place where I 100% unequivocally believed it was in my head and NOT physical. I had an enormous amount of proof.

  4. Enjoy Life. Find a few things to be extremely excited about and run toward, to fill the time you are no longer going to spend worrying. For me it was planning a trip to Miami, beginning art school, and making & decorating delicious acai bowls every morning (I was really into copying this instagram: @alphafoodie). It sounds dumb, but I really focused hard on these things, and all things fun and funny, completely ignoring all fear and physical sensations. Fear is gasoline on the fire, fun is like a fire hose. I thought a lot of my mom, who is the funnest person ever and always having a good time, never worrying. I tried to think WWMD (What Would Mom Do?).

  5. See a TMS specialist. I was about 80% of the way there, but I still noticed twinges of pain sometimes. I met with a TMS doctor in Chicago, Dr. Stracks, and after he confirmed I was a classic TMS case (not even needing to hear details of my symptoms), my IC symptoms never returned. I was literally cured the second I left his office. I think I needed final final confirmation from a respected, real doctor who knew about TMS.
I have had other symptoms pop up since then, but am able to shut them down by modifying and using these steps. I e-mailed Dr. Stracks recently about a skin symptom I was having a few days ago, and after receiving confirmation that it had a TMS connection, I was able to actually stop it from happening with my mind. Now I know it is also a stupid, fake thing I have complete control over.

If I had one more thing to suggest, it would be to find and use a guided meditation or EFT/Tapping script about befriending your body. I found a great one on TheTappingSolution.com here that has helped me make some breakthroughs. It can help to actually tell my body that we are on the same team. This meditation is great when you are having a meltdown and want to turn on your parasympathetic nervous system and just relax. I try to maintain and re-balance by doing one of these, or TM, most days.

I sincerely hope this helps some of you out there! You will get through this. Remember: it's just your brain being stupid.

xx
Claire
Click to expand...
May I ask how long you took to recover? I know that it doesn't matter cause everyone is different. I'm a male who's been practicing TMS for about 8 months now and I still have alot of fear to get over.
 
Hi, I am trying to find a success story about embedded chronic UTIs I keep getting repeated UTIs every 3 months initially thought I had IC bit theh cultures turned out positive . Last 2 years have miserable with fear of what if infection spreads to kidneys or destroys gut et. Currently in a flare and cant determine if even positive UTIs are TMS or just pelvic pain.

Please respond . Thanks
 
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