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Interstitial Cystitis (IC) and Bladder Pain Syndrome (BPS)
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Interstitial Cystitis (IC) and Bladder Pain Syndrome (BPS)
Interstitial cystitis support group and discussion community
Mar 7, 2025 • 1:32 PM (edited 5 days ago)
I am a man and have been dealing with this for over 40 years I would go see a doctor and explain my situation of excruciating pain in my bladder and bowel problems and the doctors treated me like I was crazy. All they ever gave me is antibiotics even though I had no infection. I had a period for 5 years straight I could do nothing but suffer and then for whatever reason the worst pain just stopped, and I was able to return to work. Not all my symptoms went away but it was manageable. As of last month, I was going through a lot of stress, and the excruciating pain is back. Now I was never diagnosed with painful bladder syndrome but I know in my gut that is what I have however I am now in my late fifties and have been diagnosed with bladder cancer and BPH so I know the doctors are going to say that is the cause of my pain so I will have to argue with them that I did not have bladder cancer or BPH when I was 15 years old when all this started. The only medication that seems to help my pain even for a few hours is Adderall. I am not sure how or why it helps but the pain becomes tolerable or even gone but come right back some hours later. I got the Adderall from a friend who could spare a few but now I have to see if I can get a doctor to prescribe it to me. Sometime the pain is so bad I would rather die than live not because I want to die but because the pain is too much.
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Mar 7, 2025 • 1:59 PM
Here is some information which you might take to your doctor:
Research about Dextroamphetamine sulfate helping with IC/BPS. Adderall contains dextroamphetamine and amphetamine.
https://pubmed.ncbi.nlm.nih.gov/16440825/
Also listed on an IC page
https://www.ichelp.org/understanding-ic/medications/#:~:text=Amphetamines,Anti%2Dseizure
research on amphetamine and IC/BPS:
https://article.imrpress.com/journal/CEOG/32/4/pii/2005070/247-249.pdf
Mar 7, 2025 • 2:13 PM
In reply to Kathleen1314's comment
Thanks for the information I am wondering if anyone else has used Adderall or some other amphetamine that helped with their pain?
1 ReactionsMar 7, 2025 • 3:43 PM
In reply to elitelockmike's comment
What made you decide to take the adderall?
I have added it to the list of IC helps that Inspire users have used with your call name.
https://www.inspire.com/m/Kathleen1314/journal/cc2b0a-ic-interstial-cystitis-a-compilation-of-what-works-for-inspire-posters/
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Mar 7, 2025 • 4:07 PM
In reply to Kathleen1314's comment
Well, it is going to sound strange but as I mentioned in my original post I went through terrible pain for 5 years and one day I also had a cold, so I took an over-the-counter medication called Contact Cold and Flu that had pseudoephedrine in it and that is like a speed medication and my pain got better so I started taking it every day and it made me jittery but it help at least a few hours a day. I have to admit I took a lot of it every day, but it was the only way I could get through the pain with some relief. This over-the-counter medication is no longer available as people were buying it and turning it into meth. I went through a long period where the unbearable pain stopped (why I do not know) other symptoms were manageable until last month when the pain came back as severe as it was. I tried other suggestion like taking Tagamet and Benadryl and nothing helped so I decided to try Adderall and see if it would help, and it does. It is obviously not the perfect solution, but it is all that helps my pain.
0 ReactionsMar 7, 2025 • 5:41 PM
In reply to elitelockmike's comment
How did you connect the pseudoephedrine to the adderall and then decide to try it?
0 ReactionsMar 7, 2025 • 5:50 PM
In reply to Kathleen1314's comment
Here is some more research:
https://pubmed.ncbi.nlm.nih.gov/23971244/
"Results:All six women found marked relief in their painful bladder syndrome in a rather short length of time. The benefit persisted as long as the therapy was maintained. Temporary cessation resulted in prompt return of symptoms, but resumption of sympathomimetic amines again allowed good relief of bladder pain and related symptoms.
Conclusions:Because of very few side-effects and no drug dependence in the dosage used, sympathomimetic amines should be considered for first-line therapy."
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Mar 7, 2025 • 8:34 PM
In reply to Kathleen1314's comment
Well, I learned that Pseudoephedrine is also a sympathomimetic drug of the phenethylamine and amphetamine chemical classes. So, I figured the Adderall should have the same effect and it does at least for me it helps. I hope that this will help someone else with the same condition.
Mar 7, 2025 • 8:39 PM
Hi, I am so sorry, you’re going through this with no support from your doctor.
I was wondering if you had considered pelvic floor therapy. I saw one for a while and he also taught me to self help. It’s just when you spoke about your bowel too. The pelvic floor controls the urethra, bladder and bowel but you probably know. Along with amitriptyline and later gabapentin. I saw a homeopathic doctor and an acupuncturist.
I felt it was worth mentioning.
I hope you find the combination that is right for you as we all know it’s not one size fits all with IC. I wish you all the comfort in the world. X
Mar 7, 2025 • 8:59 PM
Please speak to someone you trust about the way you feel. Could a friend or relative go with you to the doctor for support. Please speak to someone. X
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Mar 7, 2025 • 9:36 PM
In reply to lindaataylor2's comment
So sorry you are suffering with this invisible disease. Pelvic Therapy has helped me a lot with IC and Bladder pain along with Bowel disfunction. Unfortunately, I was not referred for Pelvic Therapy until I was in my 50's although I had been having intermittent pain for 45 years.
The biggest thing I've found has been small hard stools impacting the bladder as they move along the GI track. Makes it hard to pee and worst when laying down at night. The Pelvic Therapy has given me exercises to move things along without medication and the knowledge of what's stool related and what's UTI.
Intense acupuncture (3x a week for 3 months) by Oriental medicine doctor (not U.S. MD) helped desensitize the pain pathways as well. But it was a commitment for the initial 3 months and then weekly for another 3 months. Major reduction in pain - better than any medication I've taken. Look for an Oriental medicine clinic in Chinatown/International districts or areas with large Asian populations.
Mar 7, 2025 • 10:15 PM
In reply to elitelockmike's comment
I hope so too.
I have spent a large part of the day reading the research on this. There are several research studies that back up the use of this and similar drugs for IC/BPS.
Thank you so much for the info. I added it to my compilation page with your name.
Mar 7, 2025 • 10:18 PM
In reply to jalefen's comment
Good information.
I know of no one else who has pointed this out. Thank you.
Trying to think how to phrase this for the compilation page..... Put it on with your name and phrased as best I could. https://www.inspire.com/m/Kathleen1314/journal/cc2b0a-ic-interstial-cystitis-a-compilation-of-what-works-for-inspire-posters/
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Mar 7, 2025 • 11:18 PM
In reply to Kathleen1314's comment
Thank you for trying to help us all. X
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