Severed Pudendal Nerve

[Allie]

Thanks AGAIN to all who replied. I am having SEVERE urinary issues...cannot "feel" urine in my bladder anymore, cannot "feel" when I urinate - I can only tell that I am because I hear it splash down in the bowl...I have to PUSH urine out now. This is SCARING me...one of the BIGGEST SYMPTOM of Interstitial Cystitis is urinary FREQUENCY, and I have NEVER EVER had to "push" urine out, and, I can ALWAYS "feel" urine in my bladder.

I SO appreciate ALL the help I have been given so far, and, it is ENCOURAGING to know that it's POSSIBLE this is a temporary situation. I HAVE to keep praying it is.

IN THE MEANTIME, does ANYONE on here have ANY of the Urinary problems I described?

THANK YOU ALL SO MUCH IN ADVANCE!

~Allie

[calluna]

I think I can hold my hand up to that last one, although my situation is not the same as yours. I had urinary problems for many years before I ever had PN symptoms, I had colposuspension to deal with stress incontinence back in 1994, and although it certainly dealt with the stress incontinence, since that surgery I find it very difficult indeed to know when my bladder is full, I just don't get the feeling that I need to go. And passing urine is very different, I have to push, it is not just a case of letting go, as it used to be. Also sometimes I have problems passing urine, I try to go and nothing happens - fortunately this does not happen often! In general I've got used to my new situation over the years.

(My pudendal symptoms started after pelvic reconstruction surgery in June 2009, they used a lot of mesh in some unusual places - new technique - and the thinking is that the nerve is now either stretched or compressed or irritated by the mesh, or that they actually damaged the nerve during the surgery. I woke after the reconstruction surgery with a completely numb area - left side of vulva, perineum, anus. The feeling started to come back after some weeks, when it returned, it came back as pain, and it has been with me since then. I'm waiting to see if it heals, they told me 1 - 2 year timescale, in the meantime I am under the care of the local Pain Clinic, they've helped a lot. )


I would strongly recommend that you start using icepacks - they really do make a difference. Also I think you really need to get some medications that will help with your pain. As has been said, it is important not to get into a situation where the 'pain gate' gets stuck open.

Lifestyle changes are also important, even if only they are only for the short term. If you find sitting uncomfortable, avoid it. I now sit only with my special cushions. Have a browse through this site, there is a wealth of helpful information .....

I do hope that you start to feel better soon!

[Amanda]

I agree with Calluna, ice is a great way of stimulating the bladder to go. Having to push is something im used to as well.....its not comfortable but you do have to go often. I find that standing in the shower with water flowing helps me release and let go....you could try using a water bottle when you need to go, and flush out the urethra with cool water to encourage the flow of urine.

[pomegranate]

When I suffered from urinary issues in the past, I found that squatting in the warm shower or bath was the only way I could completely empty my bladder.

Are you on any meds that can cause urinary retention? Just a thought. That side effect didn't kick in for me until after a month on meds.

[Allie]

Thanks AGAIN to all you VERY KIND people who have replied...I SO VERY MUCH APPRECIATE IT.

Today was by FAR the worse day. Like many of you, I DO NOT FEEL urine in my bladder anymore. Because of my disease, I am USED to VERY SMALL amounts of urine causing pain...that is the hallmark of Interstitial Cystitis...bladder pain upon urine filling, and, the relief of pain when voiding.

Like a couple of you said, sometimes, I sit down to urinate, and I JUST CANNOT GO. I have NEVER had this happen to me. EVER.

I am not on any medications that would cause urinary retention...I get that often with medications...I cannot take Narcotics for pain of ANY kind for that reason.

I have developed pain in my upper buttocks today, and, a vague pain and weakness in my left leg as well.

The ONLY way I know I have to urinate is that I have a "burning" sensation in my uretha if I "push". So, I sit down on the toilet to go, only to either NOT be able to, or, to have to wait and wait and wait, and then NOT even feel that the urine is coming out, and then PUSH to keep it going.

WHAT kind of Dr. should I see for this condition? The Dr. who did my block is simply a radiologist. The Dr. who referred me is a Urologist. This is certainly not their areas of expertice.

I live in New York State. Does ANYONE know ANY Dr's I could see? I would be willing to travel ANY where in the United States.

THANKS AGAIN IN ADVANCE...I am REALLY REALLY suffering, both physically, and mentally as well.

~Allie

[Celeste]

I've heard only good things about Dr. Howard in Rochester. He can diagnose PNE if you have it, plus is a resource for urogyno issues. I've never met him but I've heard he is kind and helpful, so I think it's okay to recommend him.

Best of luck to you, and let us know what happens.

[Violet M]

I was going to say Dr. Howard also. You could also look for a PT on the list of PT''s for one near you. If you have tension in the pelvic floor that is contributing to your problem some myofascial release might be helpful. Dr. Hollis Potter in NY might be able to help with a diagnosis. You can check out the physician list for more ideas of where to go.

[Allie]

Thank you BOTH so much for the Info on the Dr's. I will definately look into both of them.

STILL having problems today.

IF this was going to get "better" in a month like the Dr. told me, I would THINK it would SLOWLY be getting better day by day, don't you all agree? But instead, it gets worse.

I am DISCOURAGED and DESPONDENT beyond all words...

Thank you again...

~Allie

[Celeste]

IF this was going to get "better" in a month like the Dr. told me, I would THINK it would SLOWLY be getting better day by day, don't you all agree? But instead, it gets worse.

Mostly, I think we just have to abandon our ideas about how we think it "should" go. Attachment to these ideas only sets us up for despair when we don't get a match. Regarding pain, it is what it is. You have no control.

But now you have some names in your state to go see, and hopefully there is some relief out there for you. Let us k now what happens.

[Allie]

Hello all...

I have developed NEW symptoms, and I do not know if ANYONE has these:

Pain in my left buttocks.
A vague numbness that goes down the back of my left leg.
HYPER EXTENSION of my LEFT KNEE that started on Tuesday...UNFORTUNATELY I kept walking on it, and I now have EXCRUCIATING pain on the back of my left knee, to the point now where I have LOST the ability to WALK without a limp.

IF I was getting a LITTLE better each day, I MIGHT believe the Dr. who did these pudendal blocks that this situation was TEMPORARY. But, everyday it gets a little worse.

DOES ANYONE have THESE symptoms as well? I have an appt IN ROCHESTER with a Neurologist. I called their office yesterday and asked for a cancellation..they have none, not with any Dr. So, I called again TODAY, and told them I have lost my ability to walk...they said to see my Primary Care Dr, and perhaps go to the Emergency Room. I am NOT doing that...I have BEEN to the Emergency Room 14 times in the past year for my Interstitial Cystitis, and, what are they going to do? The receptionist then told me that MOST Dr's in the Syracuse NY area, which is where I live REFER their patient to their office, since they cannot help them.

I'm so sorry to go ON AN ON...I just don't know if anyone has had these symptoms.

Thanks again in advance.

Allie