Pudendale nerve InterStim : Has anyone... - Pelvic Pain Suppo...

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Pudendale nerve InterStim

Julieamb profile image
14 Replies

Has anyone had a pudendale nerve InterStim? If so can you please tell me if it helped and how long the recovery was after the procedure was done? I pudendale nerve pain but I also have lots of urinary urgency. I feel like I have to pee around the clock even right after I really do pee. So I am wondering if anyone else feels like this and if the stimulator might help. I have an InterStim in now which stimulates my sacral nerves but my doctor wants to now redo it and move it to my pudendale nerve. The current InterStim worked well for my urgency, not my pain for awhile but is no longer helping so now my doc wants to try the pudendale nerve instead. Any advice is appreciated thanks!

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Julieamb profile image
Julieamb
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14 Replies
Pelviccrusader profile image
Pelviccrusader

I have discussed things like this with my pelvic doctor Dr. Echenberg In Bethlehem PA. He will do very reasonably priced consults by phone. Last time I talked to him he didn’t know of any that kept working with time.

svaillantkenn profile image
svaillantkenn

I am having this device implanted in February. Will post about it when the procedure is done. Dr. Kenneth Peters in Royal Oak Michigan specializes in doing this procedure.

Julieamb profile image
Julieamb in reply tosvaillantkenn

Hi and yes that is who I am seeing, I am also supposed to have it done in February too. I just thought I would try and find someone who has had it done. Please let me know how you are doing and I will do the same.

jquintile profile image
jquintile in reply toJulieamb

I had 2 stim implants but in my sacrum.......after all the painful surgery, neither worked and I didn't want them in my body........usually. the contacts are placed along your spine. That may work better..........I won't let another surgeon touch me for this........A new doctor I saw recently, a woman who is studying vulvodynia (or, whatever you want to call it) is doing a Cat Scan at the end of February........there is a possibility that I have some veins or arteries pinching nerves because they are probably distended and may be pressing on nerves...........I hope she's right.......good fortune to you...

suzibal profile image
suzibal in reply tojquintile

Can you tell me the dr name plz

Julieamb profile image
Julieamb in reply tosuzibal

For the pudendale nerve InterStim the doctor is Ken Peters in Royal Oak MI

suzibal profile image
suzibal in reply toJulieamb

Thank you for replying

I am going to see dr peters in March.

I was wondering about the other female dr you saw. Because I guess my pain is triggered by tight pelvic muscle.

I am still delaying the nerve block as I heard from many people it gives only temporary relief! And I am not sure if it's the right thing to do without a definite diagnosis no one knows why I am having this pain so far I saw 5 different specialists the last 2 years and nothing. I just want to move on with my life. I am always in pain and I miss my life.

I hope to find someone who knows how to treat this evil pain.

Julieamb profile image
Julieamb in reply tosvaillantkenn

Hi, I have had to move my date back to early April now with Dr. Peters. Will you please let me know how you do after you have the procedure? Thank you in advance.

svaillantkenn profile image
svaillantkenn in reply toJulieamb

Will do.

Kootsie profile image
Kootsie

I have had an interstim device for pelvic pain for 8 years. It never helped and I wish I hadn't done it. Device is in my buttocks for the rest of my life because I can't afford to take it out. It is uncomfortable as I am thin. I would not recommend. I know several people who have done this and not found it helpful. If you go through with it, I hope you do. Myself I wish I had listened to other's advice. My dr. talked me into it because of urinary frequency. My urinary frequency has improved but only because my diet improved (less acid).

StAnnes profile image
StAnnes

I was at a group meeting for spinal cord stimulators and two of the ladies had this. They have both had stims fitted and have had success. The recovery time for them was about 6 weeks.

jquintile profile image
jquintile

Dr. Douglas Spiel in Edison NJ. He implanted 2 stim units as an experiment. Neither worked. I cannot recommend him. He talked me into stem cells treatment which never had a chance of working. I am now seeing a new doctor who's specialty is vulvodynia. she is at Robert Wood Johnson Hospital in New Brunswick,NJ. Phone: (732) 235-6600.....I am trusting her, the only problem is parking in New Brunswick and she is very busy.....but she's given me new hope.....good luck....

Rxmom profile image
Rxmom

I had retrograde stim placement end nov at main line spine in king of Prussia (dr Jeff) Tremendous relief - def over 70%. I have most of my day back so far. It’s still there & can get bad if I do too much) I just returned from a weeks carribean vacation & and going to try to work a few days this week. Recovery is very brutal for 4 wks then slooow improvement for another 4.

I suffered relentlessly for 6 yrs. but it doesn’t work for everyone. I failed w 8 day drg trial but the 8 day retrograde gave 70% reduction. If you get it make sure they don’t code PN (ins deems it experimental) you need your icdn code to be cprs (chronic pain syndrome) or coccydynia. I had fall on coccyx and only have rectal pain; can’t comment on urinary or vaginal.

Welcome to private message me - I can’t figure out how to do that on this site. If u get it I’ll be happy to share the details

Julieamb profile image
Julieamb in reply toRxmom

Thank you, so happy it is helping you.

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