New and hoping to get some answers

[Vjera]

Hello everyone!

I'm not diagnosed with PN yet altough I think my symptoms are tipically for PN. Here, where I live most of doctors didn't even heard about pudendal nerve.

All of my life I had trouble with urination meaning that I had to go every hour or two and sometimes more often. My urinocultures were always clear.

In 2013 a day after intercourse started to feeling pain in my urethra but only after urinating. Went again for testing my urine and cervical swabs and guess what...they all came back clear. The pain in urethra stopped after about 10 days and didn't had pain or problems until this year in february again after intercourse. But pain in urethra again stopped after few days but than I started experiencing itching and burning in my vulva. Doctor assumed it was yeast infection and gave me some cream but when I started using it I was feeling even more pain and burning in my inner vaginal lips and vaginal opening. They again test me for all STD's but everything came back clear again. Burning in my vulva is not constant but for the last 6 weeks I had huge problems with urinary retention.

Also, I have pain in my lower back but had it for ten years.

Please, can you gave me advice how to manage my urinary retention because urologist gave me no meds and neurologist also didn't prescribe any meds until I do SSEP and urodynamic testing. Neurologist also told me that I can't take any meds for antidepression because they are causing urinary retention and thinks that using that meds will make my problems worse.

Thank you all for reading!

[Violet M]

Hello Vjera,

Welcome to the forum. Do you feel like the urinary retention is related to pain at all? Since you sometimes experience pain from urinating maybe you are reluctant to relax and allow the urine to flow. If so, maybe some medication like neurontin or lyrica will quiet the burning and help you to relax. I have heard of urine retention as one of the possible side effects of antidepressants so I agree that maybe it's smart to avoid those.

Also, do you have any physical therapists in your country who specialize in the pelvis or pelvic floor who can evaluate you for tense pelvic floor muscles or sacro iliac joint dysfunction since you also have low back pain? If your pelvic floor muscles are tense maybe some valium and baclofen vaginal suppositories would help. Extra strength vagisil (20% benzocaine) might help the vulvar burning. Ice is also great. Hope this helps while you are waiting for a diagnosis.

Violet

[Vjera]

Thank you Violet so much for replaying!

Unfortunately in my country there is none physical therapist who specialize in pelvis and pelvic floor therapy. I have to look for closest but of course money is the problem.

I use ice and it's helping me with the burning but nothing helps with retention. I tried to shower with warm water but it's not helping at all.

I was wondering if that prominent bladder neck is somehow contributing to urinary retention. I asked urologist what does that mean and he said that my bladder muscle is to strong but offered me no solution how it can be treated. Only said that I have to to urethroscopy and eventually dilatation of urethra.

Neurologist told me that maybe the reason of my frequently urination through all these years was the fact that i could'nt empty my bladder but I didn't had problem with urinary retention until now. He also told me that there is possibility that I will have to use catheter but first I had to do SSEP nervus pudendus and nervus tibialis and urodynamic testing to find a cause of urinary retention.

I'm worried that this is permanent and the biggest problem of all is that I can't use any antidepressant's so I wonder what are my options for managing pain.

[Vjera]

I forgot to ask are Neurontin and Lyrica antidepressant's or other kind of medication?

[susanc]

I am also new to this forum or any forum for that matter. I don't know if I have PN so just now researching
And trying to figure it out. Is the pain associated with the pelvic floor area only surface pain? My pain
Is within, not surface. I feel like I am sitting on a ball and the pain is significantly centered on the ischial
Tuberosity...sits bone. I am schedule for a cortisone shot in the ischial area but now I am wondering
If that is the wrong direction.???

[janetm2]

Vjera,
Neurontin and Lyrica are anticonvulsants - see treatment options (sub section of medication management) off the home page for these meds and the others such as antidepressants.

Susanc,
There is a symptom list also on the homepage that may help you categorize and relate your pain. You may want to review the FAQs for a list of steps to take and tests to see if something else is the cause of your problem.

Janet

[Vjera]

Thank you Janet for replaying.

I will talk to my neurologist to see if Neurontin or Lyrica is option for me but he doesn't want to prescribe any meds until I do recommended testings.

This is so frustrating...pain, doctors who don't understand and the fact that I'm not able to have normal life. Most of my days I lie in my bed trying not to make thinks worse.

Also...maybe this is somehow important but I noticed that I have more difficulties with urination in the morning. By the end of the day it's much easier to urinate. Does anyone know reason for that?

[Violet M]

Also...maybe this is somehow important but I noticed that I have more difficulties with urination in the morning. By the end of the day it's much easier to urinate. Does anyone know reason for that?

Not sure. Hopefully the tests you are having will give you some answers.

Susan, my pain was primarily internal.

Violst

[Vjera]

Violet I hope so too.

I' m still trying to find some tips and tricks to reduce urinary retention. If there are any.

[Violet M]

I guess it would depend on what's causing the retention. It seems like urinary retention associated with pain might be treated differently than urinary retention without pain. If there is a structural problem restricting urine flow that might be treated differently than muscle tension restricting flow or a nerve problem where the signals just aren't getting through. I hope your doctors can help you sort this out.

Violet