Theory about TMS and bladder pain

Btw: I take amitriptyline again, yes, it’s a crutch. It helps with the pain and I sleep better. Before I was awake at 5 in the morning, feeling anxiety especially in my bladder. That’s an awful feeling. I need to address these issues. One is that my workplace will fire people in the end of January. I don’t think they will fire me, but it is not unthinkable. Again, my problem with certainty. I never thought that this is an issue of mine. I need to give up this attempt to be in control. I know where it comes from. Puha...so many things to address!

 

Hi Time2be: Can you share what the urologist in Los Angeles said to you? I just wanted to tell you that I can RELATE soooo much to everything that you wrote in this thread. SO MUCH. I too am down the rabbit hole of biofilm theory after I had an intial UTI, then cystoscopy, then urinary symptoms after that for the past 8 months. My urologist where I live does not believe in biofilm bacteria theory. My symptoms are exactly the same as yours - except it is just a feeling like I have to go pee. I have done bladder training and I have gotten my voids down but I stress about how many times I go pee during the day. Which of course causes tension, makes me feel more stressed and I pee more. I have found periods of relief especially during vacation, and times when my body has calmed down. I truly believe mine is very much related to TMS/Fear/ and oh no what if it gets worse? The uncertainty! I have spend so much on supplements and pills to try and 'heal' myself. About the only thing that has seemed to have helped is grapefruit seed extract. I just wanted to write to let you know that you are not alone. My husband gets so frustrated with me because he can see easily how my symptoms are tied to stress/anxiety. He is just getting sick of me being 'obsessed' with it and wants his happy wife back.

I had an incident where I took too much CBD/THC oil over the holidays and I was worrying that I 'damaged' myself. I was worrying because I felt shaky. Well that week when I was 'worrying' I didn't think about my bladder at all. I also have random times where it will just completely disappear. I can sleep through the night, I don't have to wake up to pee. I don't have any pain or burning. When I do go pee I have normal voids. I don't have dipstick tests, but I do obsess about what my urine looks like.

Have you ever tried an OAB bladder medication? I would like to try one just to see if perhaps it would simmer down my nervous system so I could focus on some whole body calming down. I do meditate every night.

My issue is I go down the rabbit hole and I read too much on social media and scare myself. Like this morning reading about root canals and bacteria contributing to UTI symptoms. Just don't go there! lol.

Distraction works huge for me. I have a 4 year old son so I read and play with him. Enjoy watching TV, cooking, going for cross country ski's, skiing.

Anyway sending you love @Time2be

 

Dear Keenie82, I saw that you have found the thread where I give the infirmation of Dr. Eric Robins. Your story sounds familiar. I also think that it is most likely TMS you suffer from.
I am doing better now, but will see a specialist in March. If he cannot find anything, I will treat my symptoms as TMS.
OAB medication didn’t work for me at all. In the very beginning I tried.
You are right, reading of biofilm etc. can increase the pain. And distraction is very good! Doing nice things that make your life better is very important.

 

I need to stop going down the rabbit hole! I obsess about this WAAAAAAAAAAYYYYY too much. So what if I have overawareness of my bladder. It is TMS. When I treated it as TMS I felt way better than if I think of it as biofilm. Thanks for injecting a dose of reality back into me. Thanks for letting me know you tried OAB. And yes reading about it increases the anxiety, sticks it in my brain, and disrupts my day!

I will try to do more nice things for my life

 

Hi Keenie82,

I am experiencing EXACTLY your same sympthoms. I've been dealing with frequency for the last three years! Always! And I ended up here, afternoon three years, focusing on TMS

Just wanted to let you know that I have tried all meds in the market for OAB and many other conditions related to the bladder... Nothing has helped because our bladders are perfectly fine and healthy!!

I've been through all tests possibles and all did come perfect as well.

Be confident! I'm sure we will be fine sooner or later!!

With LOVE,

Andrea

@Time2be soooooo happy for you if you are feeling better!! Tons of hugs from Madrid

 

Thank you very much Andrea! Are you on instagram? Would love a buddy to share our good days with. I am rkeenie82;

I am still living a good life. Loving husband, 4 year old son, white friendly dog, work full time, sleep well at night.

I get bummed by my TMS. How have you coped with frequency? Do you have good days and bad days?

Sending love! It is maddening but it is TMS! I know because stress flares me. I am very much mind body related. My mind can create my symptoms so easily. Like miffybunny said I have programmed this into myself. Plus reading endlessly abt thoroughly focusing it doesn’t help.

Thank you for your kind words!

 

Hi Keenie82 and Andreita!
It takes time to resolve this, so be patient. I am doing somewhat better these days, though some days are better than others. Here is the list I have at my desk at home and that reminds me everyday to be patient and stay calm:
1. Work on removing the negative
2. Work on being in the moment
3. Work on taking baby steps and taking each day as it comes
4. Work on not freaking out on the future
5. Work on not getting anxious about things that have not happened
6. Work on not letting your thoughts spiral out of control
I found this list once in a blog of a physiotherapist. It helps me a bit.
Now, I wait for the appointment with the specialist in London, it is end of March. I don't have leukocytes anymore in my midstream urine. And I don't check the first void because in women there could always be something in it. It will be the task of the specialist to find out if I have an chronic infection there. Now I doubt that I will learn anything new. My guess is that he also says in the end that he cannot find anything wrong. That will have cost me a lot of money. But I need this certainty.
Basically I am hopeful. I think that I will be fine either way. Either it is TMS or there is a sort of infection that can be cleared.
Keenie82@ that sound awesome, a supporting husband, child, dog, good night sleep. You are doing all the right things to get better! You also seem to be good at being good to yourself. This is so important!

 

Hi @Time2be - greatly appreciate you connecting with me. All your tips are valid points. This January I have been in a 'stress' flare about my bladder. More I stress, the more it stresses. Anyway I totally see how this is TMS. I do however look forward to hearing about your trip to the specialist in March I just keep keeping on. I have counselling this afternoon. I just need to talk to someone about this, other than my husband and parents. I am driving my husband a tad bit bonkers. Thank you for the list. I am going to print it out!

 

Hi Time2Be, just curious if you have had your specialist appt yet?

 

Dear keenie, Dear all,
The appointment with the specialist in London was very interesting indeed. I have to highlight that he is not some quack, but a very high esteemed professor at a London university. A very polite doctor and a very good listener and diagnostician. He made an ultrasound of the bladder and told me that part of my bladder wall is thickened. Most probably due to an embedded infection which I might have for a long time. That would also explain the leukocytes I had in my urine. He also told me that I might have a histamine problem, which he tested with a blood test. When I left the clinic I was relieved, astonished and somehow in doubt. Could that be right? He said also that all sorts of stress aggravate my condition.
A week later I received the result of the urine culture. Yes, there were bacteria the others have not found because bacteria from a embedded infection take a longer time to grow. And that’s what he is doing. Normal culturing also dismisses all bacteria growth under a certain threshold and research has shown that also lesser bacterial growth gives symptoms. Now I am taking an antibiotic, first for only two weeks to see how I react. But he thinks I have to take it for a month. And then we’ll see. I have another appointment in two months to see if the bladder wall is already thinner.
Maybe I should be be very happy about this result and in a way I am. However, I experienced to much with this condition, so now I wait until I see real results. I am almost pain free now, but I was that also before the visit. I also asked why I have this fluctuation in pain and why in certain stressfull situations the pain starts. And then sometimes somehow disappears also as fast as it came. He said that emotions and stress trigger the immune system and that a chronic inflammation acts very different than an acute one. At least this would explain why I sometimes had periods of pain and really had difficulties to find any psychological reason for it.
Does that mean I don’t have TMS? I think in a way I have TMS. It’s the way I react to stressful situations that contributes in a bad way to my well-being. But if he is right and I get rid of the infection, then I think I will be much more succesful in establishing a better habit to cope with stressful situations.
About the histamine intolerance I am not so sure. I haven’t received the result of the blood test yet. My impression is that how the immune system reacts has a lot to do with the psyche. Of course, if I really don’t produce enough of the enzyme diamine oxidase then this has to be addressed.
If all this turns out to be correct I am mostly angry about those doctors many years ago that treated me wrong. I have to say that the label ‘psychosomatic’ has been used very early and frequently for my condition. They also didn’t
have the knowledge we have today, so this counts as an apology for their lack of diagnosis. My feelings for the urologist I saw the last four years are very different. She could have had the knowledge! I trusted her and She cost me a lot of money. I was so very much appalled by her latest advises (watch a movie, enjoy life!) and how she dismissed my concerns of having a considerable amount of leukocytes in the urine. She simply denied that something like chronic and embedded infections exist at all.
Medical science is as all other science fallible, I know that well. New theories and new knowledge arise and can turn over deep seated presuppositions about diseases. This makes it difficult for doctors and for patients. However, I am really proud of myself that this winter I followed my instincts and looked for a specialist who could rule out that something has been overlooked. I was convinced that something was not right. And now it seems this was a good intuition. I’ll keep you informed.
Please, don’t understand me wrong! I don’t say that TMS doesn’t exist. All I am saying is that in my case it seems there is an underlying infection that has to be addressed.

 

Another Update: it seems there is nothing wrong with my bodies ability to process histamine. This fits well with my experience that my condition is not food related. There will be a urine check next week. If the bacteria are gone then I don’t need to take more antibiotics than the initial two weeks. If not, then another two weeks.
Ironically I had no symptoms before I had the appointment and also not after, until yesterday.
I am now quite convinced that these bacteria contributed only to a certain amount to my symptoms. But it is good to know that there is no infection left.

 

Another update: the doctor thinks I have mast cell activation disorder. I am a bit puzzled. However, it would fit with my history of symptoms. I decided not to stress about all this. I will follow his advice and see how it works. This includes taking a mast cell stabilizer and avoid food rich in histamine and those that are histamine liberators. It’s a bit of a nuisance, especially when eating out, but I will find ways ...
One of the triggers for mast cell activation disorder is stress. What a surprise! I think that this ‘disorder’ just explains what happens to some people when they have to much stress. So, again, I am back to my psyche, my emotions and the way I proceed stress.
I am hopeful that when the infection is cleared and my immune system is calmer I will be able to go back to almost normal.
Again: do I have TMS, PPD or MBS? Yes, in a way. I like the term psychosomatic better because it says what happens: that the body delevelops dysfunctions if you are not in tune with yourself or exceeding your own limits as I did for years.

 

Hey i have been following your updates and it’s amazing of how far you have come in terms of making decisions and taking care of your body , i wish you luck in whatever way you choose to adress it as sometimes somethings work in mysterious way and there is no one solution for all, stay calm and have faith
Best wishes and keep updating!

 

Hej Kimaya,
I am so glad you can use my posts. Well, I had to take another antibiotic for two weeks (will end in three days).Then I have another testing. Meanwhile I keep the diet, I have only to avoid mast cell liberators because I am not histamine intolerant, the mast cells produce to much of histamine in case of a trigger. It's not so difficult to follow the diet and as it is no allergy there will not happen any drama, if I accidentally eat something wrong. It's a trial and error process to find out what the trigger for you is. I found out that I tolerate one or two glass of white wine sometimes (like twice a month) but not more. Basically I eat healthy without being religious about it. And generally I am doing better. The bladder is definitely better and in a different way better than before. I was astonished once about a feeling I haven't had for a long time - it was a natural feeling of having to go to the toilette.
I think mind and body go hand in hand in this process. I am basically optimistic, sometimes I have some bad days, but not often. And I allow myself to see a future where I don't have pain. I realize now how much of my energy went to this. However, I have to wait and see if this is really helping. So far, I had some very good days.
I know that some here on the forum will be critical about the path I am taking. That they might think that all this embedded infection stuff and mast cell disorder is just another fake 'syndrome' and in reality it is TMS or Mind-Body- disorder …. In my book either-or thinking is to narrow. I think as long as you are aware of the fact that mind and body play together, you are not in danger of just expecting the quick fix from a pill or a treatment.

 

I didn't check in to see your updates but I am glad I did! I am glad to hear how you are doing! Would love to see another update from you Time2Be. It is amazing that you are doing better.

 

PS I don't think that you are neglecting TMS if you are finding some answers through antibiotics and mast cell activation.