Bladder pain, pelvic pain, I am back

[Time2be]

Dear all,
This is going to be a longer post. I am back now, had been away since 2020. And no, I haven’t found reliable relief yet. In 2020 I followed the route of finding a ‘nonTMS’ cause. In 2020 I had been diagnosed with chronic UTI by specialists. Took 18 months of antibiotics, accompanied by Hiprex (Methenamine Hippurate), which I still take. Two years ago I have been diagnosed with cytolytic vaginosis, basically an overgrowth of lactobacilli in the vagina. I managed my symptoms for the last 4 years quite ok. Many periods pain free. But the symptom of urethral pain and burning came sometimes back (that I could manage with baking powder suppositories that take the acidity away). When I had real bladder burning I would have taken a course of antibiotics and that helped. Though it took always more than a month after ending the antibiotics to become pain free.
Why I am back here? In the first place I have a flare that does not really respond to my usual treatment. I am frustrated and in pain. And I asked myself always: how can it be that a UTI can become chronic, why does the nerve sensitization not end at some point?
And, this is the second reason, I want to tell you that bladder pain really is tricky. You can have TMS and a chronic infection, I think. And that makes it so difficult, you cannot just ignore the signs of infection (leukocytes in urine). And despite what an urologist will tell you, a urine culture will not show all infections, especially not chronic ones. The tests that should be able to tell you if an infection is present, are not realizable.
My question is: do you think it is possible to do TMS work and at the same time have something infectious going on the body? I have to add that my specialist thinks that I am right now - after two weeks of antibiotics - are dealing with a disturbed micro biome in the bladder plus lactobacilli overgrowth in the vagina (the urine test they do shows it) after two weeks of antibiotics. So, I should not take antibiotics unless I feel it is an acute UTI (this is difficult to evaluate!).
Or, I can put my question differently:
Do you think that TMS also could include inflammatory processes in the bladder (with leukocytes present), a micro biome that is not in balance? The last three months were very stressful for me, I am aware of this connection. I am at a point where I think I need to accept that this condition get the better of me, that’s how it feels.
the last years I often came back to this forum, I also have the curable app and listened to some of the podcasts. It is not that I totally have forgotten about the mental and psychological part of my condition.
Thanks for reading!

 

[Rabscuttle]

We can’t really evaluate the specific medical stuff.

I just want to share something- I work in veterinary medicine as a nurse. Cats get something called an idiopathic stress cystitis, basically inflammation of the bladder without an underlying cause. On urinalysis there will typically be white blood cells and blood but no bacteria. Negative culture. But if this goes on long enough, sometimes opportunistic bacteria can make use of the altered conditions of the bladder and cause a true UTI. Regardless, the stress is the underlying cause. Unfortunately cats prone to this don’t really have access to the higher level thinking that we do (which is a gift and curse) and they can get stuck in this cycle like us, without the ability to fix it.

even if what you’re dealing with is a true physical issue, you have nothing to lose by approaching this from a stress angle and taking steps to detach from the symptoms and working on lowering our nervous system threshold and improving aspects of our life that are dysfunctional. If we’re perpetually stressed and obsessive then we’re not really giving our bodies a fair chance to normalize.

I think it’s a bit interesting that you choose to believe your urine culture is missing some embedded infection than the more optimistic route of there not being an infection and this being TMS and the presence of white blood cells is merely due to stress inflammation, and the vaginal bacteria overgrowth is again due to stress and suppressed immune system from stress.

 

[Joulegirl]

Obviously, we can't provide any medical advice here. But I can tell you about my experience. I was diagnosed with Internal Cystitis. Which is basically bladder pain with no infection. When they ran tests on me, there was no infection present. They wanted to do a scope on me when I found out about TMS, and decided against and it was the best decision I made. It really hasn't bothered me since.

So, if you have symptoms and the tests are run and infection is present, you need to follow the doctors instructions. It's when they can't find anything wrong that's when you think TMS. But while you are following doctors instruction, you can do TMS work as well. It's not going to hurt.

As for TMS causing inflammation, it can. I dealt with it with nerve pain-the area would be red and swollen. As for a balanced microbiome-I wouldn't have a clue about it. I would say this-don't try to read more into your tests. If a test comes back with negative or positive-just accept that and follow doctors orders. Trying to say that some infections don't show up on a test-is causing you to focus on this and not TMS. Which is exactly what the brain wants.

 

[Time2be]

Thank you Rapscuttle and Joulegirl! What you tell me is that TMS work would be good, even if there might be something going on that has to be dealt with other ways (medication). That was also my idea. This is interesting about cats, there can be white blood cells in the absence of bacteria. Very interesting.
I also understand from your answers that I am kind of stuck in a test and control loop. Which is of cause what the brain wants. I get that. I didn’t expect you to answer to the medical stuff. I mentioned this because it is unfortunately not black and white with urine testing. It is a scientific fact that up to 50% of the urine cultures miss infections. That’s were the uncertainty lies. My specialists told me that I had a chronic infection. Now they are not sure. For three years I treated this as full blown TMS (without success). I am living with this for 30 years (with lots of periods pain free).
I think I will use TMS for lowering my felt stress and normalize body functions. It could do no harm. And follow my doctors instructions, of course.

 

[Cactusflower]

I would urge you to go hear the story of TMS coach Rebecca Tolin (YouTube). She did have some of your symptoms at one point but mainly others and was continuously diagnosed with inflammation, bacteria, gut biome issues etc for 13 years by well meaning practitioners who wanted to help her. She made many choices in her long confinement, and making those choices was another added stress.
Having a “dis-ease” & managing this “dis-ease” was so stressful.


So why not drop some of the decision making for now. Why not look at things from the angle of what could help. A creative experiment of “what if’s”.
Eg. What if learning to meditate by sitting or laying quietly for 15 minutes a day could be helpful. Would you try it? Could you try it without judgement - just watch the breath at your nose for a few minutes and when you get distracted return to the breath. Do it for 7 days and then see how you feel?
Or
You could use that time to journal about anything and then tear it up and toss it. 7 days, see what comes up for you.
Your only goal is to put your stress aside for 15 minutes a day. Either in your breath or on your paper.
I think these things will help you begin to clear a little fog to see the path you want to take going forward. It does not hurt to try. No cost, only 15 minutes of your time.

Then please come back and let us know what you experienced.

 

[Time2be]

Thank you Cactusflower! I will listen to the story of Rebecca Tolin. And I will try the 15 minute meditation, sure! I guess you noticed that I am in hyper vigilant state right now. I know that I need to get into a different state. Decision making seems to give control, but it isn’t. Thank you again! I will come back!

 

[Cactusflower]

Thank you Cactusflower! I will listen to the story of Rebecca Tolin. And I will try the 15 minute meditation, sure! I guess you noticed that I am in hyper vigilant state right now. I know that I need to get into a different state. Decision making seems to give control, but it isn’t. Thank you again! I will come back!

"I know that I need to get into a different state" - do this gently. No forcing or cramming yourself into a "different state". Take it a moment at a time. It can change.
"Decision making seems to give control, but it isn’t." - It will. Jumping from "cure" to cure isn't really making a decision. Allowing others to lead your path isn't making a decision. What begins to give you some control: even when, at least your mind, will at first say that it isn't control because of the fears attached to making a firm decision (failure, responsibility, what others may think, not people pleasing etc) will eventually give you a broader sense of agency, and foster some broader feelings of safety even in what you can not control. Working through that will come, and it can come very naturally.

After reading Rebecca Tolin's story, I suggest you look at Dr. Brad Fantisil. His simple approach to TMS is refreshing and uncomplicated. I find it very re-assuring.

 

[Time2be]

Meanwhile I had a real UTI, and vaginal infection. I am at the end of medical treatment for this and, not surprising, the pain is still there. Not as bad as it had been, and sometimes it subsides totally, so I had really good days. The anxiety comes sometimes back, it is not as strong as it had been.
My conclusion is that I sometimes have both, an infection and TMS, and I wonder if TMS makes one more prone to get infections. Anyway, I did the meditations and they calmed my mind. I also try to just notice the pain without evaluating the sensation. One thing is to understand the pattern that lies behind the pain, something totally different is the practice to deal with it.
Thanks again for your kind replies!

 

[JanAtheCPA]

All you have to do is Google "stress and inflammation".

Medical research is finding more and more that inflammation is strongly associated with a growing list of chronic conditions. Association is not causation, and they are still looking for some kind of pathological and physiological cause in each case. They aren't yet ready to blame stress, but when I told my new (younger) rheumatologist at Kaiser that I blamed excessive stress for my sudden onset of rheumatoid arthritis in 2020, she agreed, 100%.

Look to your mental and emotional health.

 

[Time2be]

Thank you JanAtherCPA! Yes, I read about the connection between stress and inflammation. There is also a connection between anxiety and inflammation. I read also about neurogenic inflammation. There can be leucocytes in urine without bacterial inflammation. I am in treatment with specialists in London who now are very cautious prescribing antibiotics. They have changed their understanding of these conditions (often named IC/PBS or chronic UTI tremendously the last five years or so. They now look at the whole microbiome (bladder and vagina) and see mor dysbiosis than just one bad bug that cause an ongoing infection. Medically I feel in good hands there. They have confirmed with tests that I had a ‘real’ UTI and ongoing inflammatory processes caused by bacteria of the cocci species. So, I treated this. And they are cautious of over treatment.
However, why is all this happening? And there is the mind - body connection. I am aware of this. And did somatic last weeks, tried to do things in my life that I love, not concentrating only on symptoms. Yesterday and today I have a sort of backlash, frustrating, but not to avoid. What I still find difficult to find the balance between medical ‘real’ causes and mind body issues. In one way they are not separable, in an other you need to address sometimes the medical problem with medical treatment without over treatment.