Interstitial Cystitis/Bladder Pain

E

ec15x

New Member
Hi all,

New to this in the past few weeks and would really appreciate some advice.
After two years of urinary urgency, burning and just the feeling of being ‘not right’ down there, I was diagnosed with Interstitial Cystitis following cystoscopy in October. On my cystoscopy they said there was inflammation including some small bleeding cracks when distended.
No treatment I have tried so far has made any difference. I recently learned about TMS and it was like a lightbulb switched on in me. I 95% believe it is TMS for the following reasons:
- I have had two flares of this which have lasted many months. Both flares came immediately on the back of a pile up of stressful events in my life - I’m talking hours later
- I notice the pain less when I am busy or happy…for example i was abroad for four weeks and barely noticed it. On the plane home, bam there it was
- it doesn’t wake me from my sleep, suggesting more that it’s psychological
- I am not affected in any way by diet changes…my urologist told me food/drinks were most likely the cause of inflammation but this is not the case for me
- the last flare went away on its own for over a year. This happened without me realising but during a time when my life became much happier and a weight had been lifted from me in regards to previous stressful events
- I absolutely fit the TMS profile and have had significant traumatic experiences throughout my life

I have been doing the TMS work for two weeks now and I am enjoying the process. However, I guess I am realising that I am not going to make real progress until that 5% fear is lifted. This 5% is down to the inflammation which was discovered on my bladder wall…does this mean it is not TMS and is in fact structural? I do not have hunners lesions which are the definitive marker for IC, just glomerulations (bleeding). My research is telling me that glomerulations are not even a reliable diagnostic marker for IC anymore and that they have been found in asymptomatic members of society. Also, could it be possible that all of the stress I am placing on myself and my bladder could actually be causing the inflammation and irritation?
I guess I am just looking for a bit of advice from more experienced members of the community to get me over this 5% doubt.
Thanks all.
 
Science noe shows that stress causes and/or increases inflammation. This is due to chemical reactions in the brain that secrete substances which affect inflammation. TMS itself is not structural, but it can influence the brain to do all sorts of things simply because of the mind body connection.
Your mind is an organ just like your liver and spleen. We’re just conditioned to think of them separately - but it is all one thing so of course the mind can effect the body beyond pain to create things like rashes, swelling, tenderness, tightness, redness, temperature changes -all of this is the mind/body connection interacting with the nervous system. It can interact with other systems to create inflammation.
If you do a search on IC on this forum you will find many people who have had these symptoms.
If you want a success story, IC was just one of the many symptoms Rebecca Tolin had, she can be found telling her story on Youtube
 
Welcome to the forum @ec15x - and that's an excellent introduction!

ec15x said:
my urologist told me food/drinks were most likely the cause of inflammation but this is not the case for me
Click to expand...
ec15x said:
could it be possible that all of the stress I am placing on myself and my bladder could actually be causing the inflammation and irritation?
Click to expand...
Yep, as @Cactusflower said, the connection between stress and inflammation is a scientific and medical fact. You can Google those words and you will find plenty of authoritative information. That urologist is under-educated and uninformed. Just my humble opinion, of course :hilarious:. Okay, giving him/her the benefit of the doubt, maybe they are still stuck with fear of "it's all in your head" syndrome. Education needed. My health care providers are at least on board with my mindbody beliefs, and I'd like to think they are considering it when they work with other patients. I've recommended Dr Sarno's books to all kinds of practitioners over the years.

I'm happy you found us because you're in the right place! And please, don't worry about your 5% doubt! The job of the TMS mechanism in your brain is to create doubt, trying to keep you stressed out and in fear. It's a primitive survival mechanism which simply does not work in today's complex world with today's overload of intangible and existential stressors.

You will always experience some doubt. I still do after twelve years of doing this work, but I'm here to tell you that as you do this work your ability to reject the doubt and take positive action whenever symptoms appear or reappear will get easier and more automatic over time.

Keep us posted!
 
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Thankyou both so much for getting back to me - I really appreciate your advice. What you are both saying is totally in line with how I’ve felt over the past few weeks, and I’ve really felt that, although my symptoms haven’t really improved, I’ve felt so much stronger mentally and had real hope that by working hard on myself I could tackle this. I guess today that TMS part of my brain was going ‘Nope, you can’t do this, let’s go back to what we know…’. Hopefully by continuing to acknowledge that voice but kindly telling it that it is wrong and we are going to do the work, it will quieten in time.
 
Please remind yourself that “symptoms” are not just physical. As Dr. Sarno says “think psychological”. The physical symptoms are merely an aside to the real cause of TMS which is mental and emotional.
For which, you are seeing improvements! How wonderful.
 
ec15x said:
Hopefully by continuing to acknowledge that voice but kindly telling it that it is wrong
Click to expand...
Exactly! This is always my #1 technique. And while it's often hard for us TMSers to have self-compassion, I do try to remember to follow the advice of Nicole Sachs, which is to always have kindness and patience for ourselves.
 
I was diagnosed with IC and tried all the therapies and diet changes that are recommended and didn't see any real relief from pain or correlation to diet. After 5 years I found TMS and went through the online program here, read a bunch of books and did a 12 week TMS therapy program with a therapist. That has helped and I don't have bladder pain almost ever and when it occured I turned out to have a UTI which was treated with antibiotics. If I get any twinges I remind myself of the work I've done and that my bladder is healthy. Good luck with your symptoms and know that you can recover. Stay away from IC websites as they are full of sad and extreme stories.
 
Thankyou so much. Although there are some stories out there of TMS and IC it’s always good to hear directly from someone who has done the work and found the benefits from it. I’ve been reading and working through the structured educational programme here, I am about 4 weeks in. I haven’t really felt any significant symptom relief yet but I do feel mentally stronger. I was thinking about working with a TMS therapist as I am still struggling not to pressure myself into getting better and be outcome independent.
 
ec15x said:
Hi all,

New to this in the past few weeks and would really appreciate some advice.
After two years of urinary urgency, burning and just the feeling of being ‘not right’ down there, I was diagnosed with Interstitial Cystitis following cystoscopy in October. On my cystoscopy they said there was inflammation including some small bleeding cracks when distended.
No treatment I have tried so far has made any difference. I recently learned about TMS and it was like a lightbulb switched on in me. I 95% believe it is TMS for the following reasons:
- I have had two flares of this which have lasted many months. Both flares came immediately on the back of a pile up of stressful events in my life - I’m talking hours later
- I notice the pain less when I am busy or happy…for example i was abroad for four weeks and barely noticed it. On the plane home, bam there it was
- it doesn’t wake me from my sleep, suggesting more that it’s psychological
- I am not affected in any way by diet changes…my urologist told me food/drinks were most likely the cause of inflammation but this is not the case for me
- the last flare went away on its own for over a year. This happened without me realising but during a time when my life became much happier and a weight had been lifted from me in regards to previous stressful events
- I absolutely fit the TMS profile and have had significant traumatic experiences throughout my life

I have been doing the TMS work for two weeks now and I am enjoying the process. However, I guess I am realising that I am not going to make real progress until that 5% fear is lifted. This 5% is down to the inflammation which was discovered on my bladder wall…does this mean it is not TMS and is in fact structural? I do not have hunners lesions which are the definitive marker for IC, just glomerulations (bleeding). My research is telling me that glomerulations are not even a reliable diagnostic marker for IC anymore and that they have been found in asymptomatic members of society. Also, could it be possible that all of the stress I am placing on myself and my bladder could actually be causing the inflammation and irritation?
I guess I am just looking for a bit of advice from more experienced members of the community to get me over this 5% doubt.
Thanks all.
Click to expand...

I haven't been diagnosed with IC, but am here myself as a result of pelvic pain and urinary frequency. I'm still on the path to recovery, and don't think I can provide advice better than that given above, but wanted to share that it wasn't until I learned about TMS and began reading all I could, frequenting this forum, and doing the work, that I started to really have hope that I could heal and overcome this. I have seen progress, it's been slow but steady.

I realized we give SO MUCH power to our doctors and medicine - essentially an external locus of control in the world of health - that we forget, and often times even reject, the notion that we have the ability to heal. Simply putting that faith back in yourself does wonders...I think many of us that come here feel so very powerless at first, TMS really changed that for me.

Best of luck to you....your assessment indicating why you think your IC is TMS sounds spot on to me. I really enjoyed Alan Gordon's Pain Recovery Program on this site. I also tend to recommend Steve Ozanich's The Great Pain Deception book. That one clicked with me most, but there or so many good resources.
 
ARCUser831 said:
I also tend to recommend Steve Ozanich's The Great Pain Deception book
Click to expand...
Amazing book. I call it the "encyclopedia of TMS" because he covers SO many topics and permutations in the TMS world, plus his personal recovery story is pretty intense. You can also read Steve's old posts on the forum Steve Ozanich | TMS Forum (The Mindbody Syndrome) (tmswiki.org) (go to the bottom of the page to navigate to older pages, or to find original threads only)
 
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