Need help and advice please

[Okiegirl]

I am hoping for some help or advice please. In February I experienced a severe sudden onset of urethral/pelvic pain with urinary urgency/frequency and was hospitalized due to the severity of my pain. This occurred approximately 4 weeks following a colonoscopy that was “difficult” to perform due to a redundant colon and I was told significant pressure had to be applied to advance the scope. The pain I endured was terrifiying. I have no history of pelvic or bladder issues. I was released from the hospital and returned to my practice (I am a primary health care provider) over the next few months I had periods of mild symptom flares I usually treated using ice to the perineal area. Fast forward to June of this year...I’m now completely disabled, severe left sided vaginal, urethral bladder pain. 2 cystoscopies done, no lesions. Lap surgery only mild endometriosis, failed interstim placement, no infections of any kind, no spinal problems or anomalies of pelvis per MRI. I am unable to sit due severe vaginal, urethral, bladder pain. I can not drive or leave my house due to pain. 2 superior hypogastric plexus blocks failed, some temporary relief from ganglion of impar blocks and 2 pudendal blocks. Absolutely have the feeling I need to urinate 24/7. The pain has been crippling and searing. I have been in PT off and on since June. I have seen some slight improvement which I’m thankful for but am still basically disabled. My PT is wonderful but I’m on the verge of losing my mind, my family and my practice if I don’t get some serious help. Anyone have the severe urinary symptoms I’m describing? Also, unable to sit, never feel like bladder is empty? I’m on all the recommended meds, baclofen, elmiron, amitryptline...pain meds hydroxyzine. Honestly, the pain must be nerve damage there is no other explanation for the burning and pressure feeling. I believe in conservative treatment but have really gotten no better in all these months and am mostly bedbound. I am considering surgery but hesitate to do something for that might not help or make me worse. There was a time I also tried bladder instillations, no help at all. I don’t think the pain is coming from inside the bladder at all. It has to be PN. I think I was injured during the colonoscopy. Possibly PNE? Any advice would be appreciated as I would love to have my life back. I have been in contact with a surgeon and initially offered a surgery date but have heard nothing back from them in almost a week and that worries me.

[April]

Okiegirl,

I'm so sorry. This sounds really difficult. Before I started medications, I had the constant urge to urinate---maybe not as extreme as you describe it, but it was interfering with my life (I was waking up repeatedly through the night even when my pain was under control). I was initially give samples of Vesicare, and it worked great. But, my insurance forced me to try cheaper options before they would cover Versicare. One of those cheaper options (tolterodine) was just about as good, so I stayed with that because it was cheaper for me. (The one that did not work was oxybutynin.) I realize your problems are bigger than just your bladder, but while you're trying to get this all figured out, you could ask to be prescribed one of those. My other medications are gralise, tramadol, and nortriptyline, and they are all working together pretty well. Given the severity of your pain, though, I think you could request something stronger.

Was the surgeon you contacted Dr. Hibner? His team will do one of the specialized MRIs to see if any problems can be identified that way, and he can review your options---what you might want to try before surgery. Amniotic fluid injections have been getting a lot of attention on the forum lately, and one person reported success with cryoablation (but others reported otherwise.). Hibner (or one of the other pne surgeons) might be able to review these and other options. Have you tried suppositories? There's a recent thread about that that might be useful if you want to get ideas for that. The thread heading is: Suppository & topical ointment options.

Keep us posted.

April

[Okiegirl]

Thank you so much for your reply. I have an interstim and further MRIs will be hard. Have you had surgery?

[Joelle7979]

Hi Okiegirl. I also had the frequent urination. Cystoscopy showed nothing. My doctor put me on Lyrica which really helped. Also azo pills u can get at drug store also helped me. It's very annoying. I also had catscan which showed no issues.

[Okiegirl]

Hi Joelle7979,
Thank you so much for your reply. Do you still feel bladder pressure?
Have you been diagnosed with PN? If so, how have you found help? Does it get better with time? I appreciate the recommendations regarding lyrica. I tried neurontin but didn’t think it helped much. It’s strange so many of my symptoms mimic severe IC but the perineal burning is much too severe for IC I think and does not respond to diet at all.

[Joelle7979]

I have had this since September this year. I have not been completely diagnosed yet with PN.

[Okiegirl]

April, it was not Dr Hibner, this doc was “cash only” at first he seemed quite interested in trying to help me. Now there has been no further response to my questions....even after offering me a surgery date. Now I am not sure if I keep waiting or what. I’ve been through every conservative treatment imaginable and am totally debilitated. I am a health care provider and honestly, on behalf of our entire profession...I apologize for the way patients in pain get treated. I worked very hard to never allow someone in pain to suffer and had no idea people were allowed to suffer like this in this day and age. I’ve never been treated so poorly in my life by the medical profession. I’ve lost my faith in it but have devoted my life to working in it.

[Okiegirl]

joelle7979, I also have that same kicked between the legs feeling, constant urinating. Are your u able to sit much? Also, are you able to work? Just wondering

[Joelle7979]

I can sit longer than I used to being on the lyrica.

[Joelle7979]

Okiegirl, I sent u a private message.