Seeking patients with Bladder or Pelvic Pain for a NIH patient panel

Mayo Clinic Connect is seeking 3-4 patients diagnosed with Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) (men or women) or Chronic Prostatitis/Chronic Pelvic Pain Syndrome (CP/CPPS) (men) with ongoing pelvic/bladder pain and urologic symptoms to take part in a Patient Panel at an upcoming VIRTUAL NIH Meeting on urologic pelvic pain October 17-18, 2022.

We are seeking 3 or 4 individuals willing to speak in a 1-hour panel about their health journeys and answer questions from the assembled audience about their symptoms, expectations from treatments, and views on current clinical management. The one-hour Patient Panel will be held the morning of October 17.

Participants are welcome to attend the full two-day meeting (free of charge) and have the option of offering any brief, final thoughts at the end of the meeting on Day 2.

We will select approximately 3-4 individuals to participate representing a diverse set of experiences. Additional information will be provided to selected participants, including a list of possible discussion points.

This invitation is on behalf of Dr. Kasey Boehmer, a researcher and patient living with IC/BPS, who is on the planning committee and will be moderating the panel.

Interested? Please complete this form and Dr. Boehmer will contact you.
https://surveys.mayoclinic.org/jfe/form/SV_6uqXJmi2bC60Zoi

Interested in more discussions like this? Go to the Chronic Pain group.

Hope y’all discuss the serious side effects of meds used to treat these conditions. Such as cipro. 😡

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@4846

Hope y’all discuss the serious side effects of meds used to treat these conditions. Such as cipro. 😡

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Welcome @4846, what condition did you take ciprofloxacin for?

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@colleenyoung

Welcome @4846, what condition did you take ciprofloxacin for?

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Ecoli Uti. I really had no symptoms of. I was 65 now 73.
Muscle tendon nerve pain small fiber neuropathy after cipro.

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Plus all the digestive issues. Had photosensitivity hives etc

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@4846

Ecoli Uti. I really had no symptoms of. I was 65 now 73.
Muscle tendon nerve pain small fiber neuropathy after cipro.

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For a serious pseudomonas infection Venous stasis ulcer on inner ankle was prescribed with Cephalexin prior to that had developed tolerance to that and Doctor said I needed something stronger to kill bacteria so wound could heal told Doctor that I had had Hep C and prior TIA in 2001 I took only 1. 750mg does of the Ciprofloxin and my heal and area above got really sore with strange clicking when I walked Doctor said to go to ER had Blood Pressure 198/92 sent to wound care for treatment after that but could not get in for couple of weeks the ulcer eventually healed and will be seeing Vascular surgeoan to treat varicose veins to help to prevent future ulcers while I was on the Cephalexin I had fatigue and itchy bumps that developed on my Labia and now there is a painful red lump there which I hope is an in grown hair. My ears have a ringing and sinus pressure starting extreme fatigue and sore muscles I have switched Doctors and He did Blood work which the other Never did despite the fact that I had Hep C Liver enzymes elevated Hep C active again Could these Antibiotics complicated my Hep and somehow harmed my already struggling Liver? My abdomen is painful and bloated soooo exhausted Should I have had Blood work done prior to the antibiotics? I am a 71 year old female who just wants to be healthy as possible and am wanting to know if anyone else has had any bad reactions to Cephalexin or Ciprofloxacin Thankyou

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This is a wonderful sight

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@midnightbompers442

For a serious pseudomonas infection Venous stasis ulcer on inner ankle was prescribed with Cephalexin prior to that had developed tolerance to that and Doctor said I needed something stronger to kill bacteria so wound could heal told Doctor that I had had Hep C and prior TIA in 2001 I took only 1. 750mg does of the Ciprofloxin and my heal and area above got really sore with strange clicking when I walked Doctor said to go to ER had Blood Pressure 198/92 sent to wound care for treatment after that but could not get in for couple of weeks the ulcer eventually healed and will be seeing Vascular surgeoan to treat varicose veins to help to prevent future ulcers while I was on the Cephalexin I had fatigue and itchy bumps that developed on my Labia and now there is a painful red lump there which I hope is an in grown hair. My ears have a ringing and sinus pressure starting extreme fatigue and sore muscles I have switched Doctors and He did Blood work which the other Never did despite the fact that I had Hep C Liver enzymes elevated Hep C active again Could these Antibiotics complicated my Hep and somehow harmed my already struggling Liver? My abdomen is painful and bloated soooo exhausted Should I have had Blood work done prior to the antibiotics? I am a 71 year old female who just wants to be healthy as possible and am wanting to know if anyone else has had any bad reactions to Cephalexin or Ciprofloxacin Thankyou

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You could join the FB groups. For cipro side effects. Find the fda black box warnings for cipro. Not to be given to elders like us. But young people are effected too !!! I was 65. My gut has never been the same

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@4846

You could join the FB groups. For cipro side effects. Find the fda black box warnings for cipro. Not to be given to elders like us. But young people are effected too !!! I was 65. My gut has never been the same

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Thankyou for your input I am always leery of side effects Do the benefits out weigh the potential danger!?

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