Constant Urethral Pain

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Constant Urethral Pain

Postby Mssammielynne » Mon Dec 04, 2017 9:11 am

Hi all,

My problem is constant urethral pain/burning. After the birth of my son in 2004 I was completely numb in my bladder, vagina and rectum area. I had urine incontinence but not fecal. This lasted until he was about 12 weeks old. At this time I returned to normal, except for pain at the opening of my vagina (only when touched, inserting tampons, sex, and exams- once I'm not being touched there the pain will subside within 20 minutes). It also left me desensitized. My orgasms we're not as strong/good as they used to be and I now only have a bowel movement about once a week. They are not hard. I had rectal pain only as a stool passed. This subsided directly afterwards. Bowel movements would make my urethra hurt. I also have a hard time passing gas. I feel as if I have to bear down way harder than is normal . It would also burn after I urinated if I didn't drink at least 50 oz of water a day.

Then 3.5 years ago while on Absorica (Accutane) for acne I developed a UTI. This was the second one I had had in my life, and was also within one year's time frame. I was passing blood clots. I have never felt such pain in my life. My entire abdominal area, my lower back, bladder, urethra, vagina - it all hurt horribly. The only relief I could get was sitting on a toilet. When I went to the doctor's office to get checked I actually sat in the bathroom on the toilet and when they were ready for me they came and retrieved me from there. I was placed on a round of antibiotics, but after finishing the bottle it didn't remove the constant urethral burning. After I urinate the pain will increase slightly for about 30 minutes, then return to my normal pain. I do not notice any increase in pain with sex. I have no bladder related issues. Urgency, no urges. The first urologist I went to said I had IC. I did the IC diet for 6 months but no change. Elimiron for year, no change. I'm currently on gabapentin 3600 mg and 25 mg of imipramine. I was given Tramadol to use for pain but I do not notice that it helps. Valium rectally or vaginally doesn't help. I've had pelvic floor physical therapy. They said my vaginal muscle tone is normal, but if she had to say any muscle was tight she thought it would be in my rectum. When she would hit the pudendal nerve spot on the right I would feel a shock down my leg. On the left, it felt squeaky. Likes when you wash plastic Rubbermaid containers. Neither were painful, I just knew she was pushing on it. She said she would diagnose with PN. I've had several doctors say that they would say the same thing. I did feel better while she was treating me and afterward, until I sat in my car on the drive home. By the time I reached home I would be back to my normal pain. I've also had pudendal nerve blocks done by CT, superior hypogastric block and the injections at s3 and s4. (I forget the name of those injections.) If I had to say either one of those did anything it would be the hydrogastric block. I'm just not sure if it was the actual block that helped or the anesthetic and pain meds they use during the procedure. Either way, on the car ride home my pain returned and after 4 hours I was back to my normal pain. The pudendal nerve blocks done through the buttocks did nothing, but afterward I had such an increase in pain that lasted me two to three weeks before I returned to normal. I did not notice this with the other two blocks. I see dr. Evans in Greensboro and he does the trigger point shots in his office. I do not believe I noticed any relief from those, but they also would put me in a flair for about 2 weeks. I stopped having those done. I've had multiple cystoscopies and my bladder wall looks "beautiful."

The first urologist that did a cystoscopy said he saw a stricture and it was stretched during theach procedure. After this, I noticed the burning after I urinated went away. It did not affect the constant burning though. This relief lasted for about 6 months and then he decided to do a dilation. The pain after urinating only went away for about 3 months this time. I now see Dr. Evans and he did not notice a stricture. So I do not know at this point if I truly had a stricture or if it was just inflammation as Dr. Evans thinks was torn by my first urologist. Dr. Evans sent me to Dr. Kapural in Winston-Salem. He is the one that did the injections. He says the next thing he would try would be a neurotransmitter because I had relief, even though it was fleeting, with the second set of injections he did.

I've read about pain pumps being used by some patients on here. I'm not sure how that works. If it's just a temporary thing or something that is done permanently, but I intend to ask at my next appointment. Dr. Kapural said that if the neurotransmitter test isn't successful he doesn't know of any other treatment.

Is this PN? Or is this some other involved nerve? I am able to locate my pain. If I press on the opening of my urethra just a few centimeters I feel as if I hit it. I've been told that that would be around my urethral sphincter. Botox is not an option because of where my pain is located. Everyone says it would cause incontinence. What do I do? The only relief I truly get is by sitting on water bottles 24/7, sitting on the toilet or lying on my side. I actually feel as though lying on my back slightly increases my pain. I do not know if this is because of my scoliosis. I recently gave up drinking sodas. For some reason I do believe this made a slight difference, whereas when I was on the IC diet and I stopped I didn't notice a difference. Coincident?

Thanks y'all!
01/05 pain at vaginal opening and decreased sensation after birth of 2nd child
07/14 severe uti, burning in urethra didn't go away after antibiotic
04/17 dx pudendal nerve neuralgia
07/17 physical therapy, no improvement
09/17 guided pudendal nerve block, no improvement
10/17 guided bilateral superior hypogastric block, no improvement
suppository valium, lyrica, cyclobenzaprine, hydroxyzine, amitriptyline, estrace,
gabapentin, imipramine,
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Re: Constant Urethral Pain

Postby Violet M » Tue Dec 05, 2017 7:19 am


Sounds like your doctors think you have PN, but that you are not quite so sure. I don't know, other than to say that the pudendal nerve innervates the bladder sphinctor and is the primary nerve involved in orgasm and it sounds like those two things are affecting you the most.

In answer to your question about a pain pump, they are generally considered a long-term treatment although I do know people who have had them removed at a later date, especially if they weren't helping.

Botox is not really a long term solution and would not really be indicated unless you had some muscles that were tight, which it sounds like you don't. The purpose of Botox is to cause tight muscles to relax but you said your muscle tone is normal.

Hope you can sort this out and find what works for you.

PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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