Update -Pudendal Nerve Inter-Stim Implants

I am VERY encouraged! I had trial bilateral inter-stim implants on March 25, 2015 and did well. Our insurance company agreed to cover the permanent implants and that surgery was done on April 21, 2015. Tomorrow will mark a full month of using them with wonderful outcome. I have four programs in each modulator to try before going back late June. The fourth program has by far been the most helpful. I have a part-time desk job and my pain level would grow to 8 - 10 on the pain scale shortly after sitting. I would have to take three hydro to bring it down to a level where I could concentrate and continue working. I now typically only take one hydro and my pain level has never been greater than a 5 since the surgery. I just wanted to encourage anyone who is contemplating having the surgery or looking into it to definitely look into it. My quality of life is much improved and I can't imagine ever going back to that kind of pain again. When I return in June to my doctor who is out of state, the programs I didn't find very helpful He will remove and put new ones in for me to try. If anyone has questions, I would be happy to try and answer them. Only three doctors in the US place the electrodes next to the pudendal nerves. I had trial bilateral sacral inter-stim done prior to this without improvement, so I'm glad I didn't give up on neuromodulation as being the answer for me. It's not a cure, but has been hugely helpful for me.

29 Replies

  • I am happy that you have had such positive results. It gives encouragement to others. Thank you for posting your progress.

  • Thanks April...hopefully my experience will benefit others. God bless.

  • I just got back yesterday from seeing dr benson. He ordered a pudendal block which I had yesterday. I didn't feel any relief right away but they said give it up to 5 days for kenalog to work if it's going to. He talked about interstim with me if the block worked however I'm not encouraged that it is going to. He talked about a lady from cedar rapids that I could possibly talk to about it if needed. I told him I thought I already was conversing with her. He is very professional and I found the staff great. The surgical center was wonderful. I'm so happy that you are getting your quality of life back. I'm so very frustrated right now but hoping I can find answers soon.

  • I'm so sorry you are discouraged, but totally understand your being so. I am glad you went to see Dr Benson and that your impression and experience was positive like mine; but disappointed that you don't have a clear answer yet. Yes, I am the lady from Cedar Rapids. So, if you don't experience any relief from the PN block, did he say what your next step should be? He did mention to us that for every 5 women that come to him that have been diagnosed or suspected with PN only 1 truly has it. Since I turned out to be that one, we never thought to ask if he was able to accurately diagnose and treat those 4 without PN. Not having PN would be a good thing; however I totally understand the frustration a person experiences for not having a clear answer for why your body is being inflicted with so much pain. I'm so glad you replied. I don't know if you believe in the power of prayer, but I am going to be praying you won't give up and the Lord would show you the path you should take to get the help you need. I really think highly of Dr Benson and hope he can ultimately help you. If you end up being diagnosed with PN and would like to ask questions about the inter-stim as possible treatment, I would be happy to speak with you. I have been praying God would use this experience in my life to help others. Before having surgery I had thought it would be helpful to talk with someone who had the implant surgery. There is a gal in Australia who has a website and shares her experience of being diagnosed with PN after falling from her exercise ball when it exploded. She had sacral inter-stim surgery and has been successful in regaining some quality of life back. She has become quite instrumental in the medical community of raising awareness for this horrid condition; it's quite inspiring. I forget the name of her website, but if you google Soula, pudedendal neuralgia, Australia, I'm sure you will find it. I have found it helpful to hear of others with similar journeys who understand the different emotions we go through while seeking an answer. Don't give up!

  • That is so sweet of you. I cried tears when you wrote you'd be praying for me as I pray for all of us with the horror of pelvic pain. I'm teary eyed right now, but am this way a lot....I am so scared of this condition. I will google Soula. Dr Benson didn't give me any other things to think about if this wasn't PN, but he wants me to do a bladder diary for 3 days and I will have to schedule a follow up. I wish I could put a picture to your name. Do you have facebook? If you want to connect, let me know! We need all the support we can get.

  • Are the bilateral interstem implants used for rectal nerve? I am in USA. Do you know anybody here who I could talk to?? Would appreciate your help.

    Did you just get it for pelvic? Can you sit without pain???

    Thanks so much!


  • Hi Trish,

    I am on my way out the door for work...but will do a quick reply. This procedure is for urinary or fecal incontinence as well as pain. No...I definitely could not sit without pain prior to surgery...it was excruciating most days if I chose to sit...which I have a desk job and have neuropathy in my feet as well so I would have to keep rotating between standing, sitting and kneeling. Which, I still do because I don't want to cause further damage to the pudendal nerves; however I am much, much better and my pain level is reduced greatly. Basically the damage to the pudendal nerve can cause pain anywhere from your lower back to anywhere your body touches a chair when you sit, rectum included. I went to Kevin Benson in Sioux City South Dakota at the Sanford Clinic. You could call and talk to one of the nurses. From your questions it seems to me they would say it would be worth a trip there for an exam and consultation. If you could have your GP or gyno refer you and send your records prior to an appointment, that would be most helpful. I would be happy to try and answer any questions you may have regarding the inter-stim or my symptoms prior to surgery, or my experience with Dr Benson. I wish you well.

  • Yes, I would definitely like to connect. I'm not a FaceBooker, but we could private message here and exchange email addresses and I could send a photo that way if you would like. Soula's website is pudendalnerve.com.au in case you didn't find it. I am glad that Dr Benson is having you do a bladder diary because that could reveal something as well. That tells me he isn't giving up on you and he may have an answer. I so understand and relate to your tears, the horror and fear of this condition. My heart goes out to you. Please hang on and keep searching.

  • Whoopsie...this response is for jlteam5 above.

  • I'm so glad something has been found to give you some relief. I hope it continues for you. Xx

    I wouldn't wish this sort of pain on anyone.... It's truly life altering and depressing.

    SS xx

  • Thank you Suzy for your well wishes. I am so sorry that you are suffering with pelvic pain too. You are SO right...pain can change a person's life very quickly. Keep searching for an answer to your pain and don't give up. It is so good that we have each other to lean on and can relate to and support one another.

  • Hello. How very interesting to hear of a completely different method in trying to release the pain. I had never heard of this form of treatment as it had never been put forward as a proposal. I had decompression surgery on 23rd April 2015 in Nantes,France. Lots of rest a nd limited sitting.

    Thank you for your Post.

    Masses of luck for a painless recovery.

  • I wish you the very best on your road to a full recovery. It doesn't surprise me that you hadn't heard of the pudendal Inter-Stim surgery. There are only three doctors in the states currently performing this surgery. It's not a cure, but has definitely lowered my pain level. I would love to hear how you are doing during your recovery. Blessings!

  • I am trying to post every couple of weeks or so. It is named "I had pudendal decompression surgery in Nantes ..."

    Bless you to on your recovery.

  • Is this the sacral nerve root stimulation approach? I tried the peripheral nerve stim for pelvic floor rectal pain but seemed to offer me no relief. Be interesting to see how the stimulator works 6 months down the track. For some people their pain adapts to the stimulator with time. Hope it works for you though. I am based in Australia and have one of the best pain specialists for these nerve stimulators.

  • Hi Pafen,

    I'm so glad to hear you have a very competent doctor. That is so important to trust your doctor and feel comfortable with him/her. I tried the sacral Inter-Stim trial in December with the temporary leads and they migrated when I got out of our SUV directly after the procedure giving me electrical jolts instead of the mild tapping sensation you are suppose to have. So, I was very disheartened and had the leads removed. The doctor that did that procedure referred me to Dr Benson in South Dakota who is 1 of the 3 doctors in the US that does this particular surgery. The wire leads are implanted deep within the pelvis in close proximity to the pudendal nerves. In my case, I have bilateral PN, so I have two implants. He uses permanent leads for the trial that have little barbs on them that keep them from migrating and you can try the trial for up to a month done this way verses the temporary leads which need to be removed after one week. Yes, I agree it will be interesting to see if I continue to experience relief from pain as time goes by. I guess it is important to keep rotating the four different programs so your body doesn't become accustomed to it and stops being effective. Right now I'm encouraged and thankful for some relief. Lord willing it will continue. I wish you the best. Please keep us updated on how you are doing. God Bless!

  • Im very interested in the stimulator you have. I damaged my pudendal nerve 20 yrs ago. I have had every surgery out there. Nothing has worked. I would love to try the stimulator that you have. Could you help me get this information? I am desperate. Could you email me at


    Thanks so much!!

  • Hi Dreambig,

    I am SO sorry it has taken me so long to respond...my life is crazy right now, but I want you to know I am available to speak with you if you would like.

    I don't know where you are located so I am giving you information for the two doctors who do this procedure in the United States. Hopefully one of them isn't too far for you to travel to. We are 6 hours away from Dr Benson, but it was worth the drive even though travel in a vehicle sitting is next to impossible. I made a cot size cushion and laid on it with the seats down in the back of our SUV and it worked out great.

    Here is the name and information of the originator of neuromodulation by the pudendal nerves.

    Dr Ken Peters

    Comprehensive Urology

    31157 Woodward Ave

    Royal Oak, MI 48073

    (248) 336-0123 (Office)

    Her is the information for Dr Benson who did my surgery.

    Beaumont Hospital Women Urology

    3601 W 13 Mile Rd

    Royal Oak, MI 48073

    (248) 898-0811 (Office)

    Dr Benson was taught by Dr Peter's whose success rate I believe he said was around 85% and his is a little lower. If you do a search on Ken Peters on YouTube, there are several videos that are helpful with more information.

    I would highly recommend Dr Benson and his staff are equally as caring and compassionate. If you have had a problem with Drs listening or believing you...you will not have that problem with him. I am so very fortunate and blessed to have been referred to him by my obgyn.

    Please let me know if you have any specific questions...I would be happy to try and help.

  • Thank you so much. I will call one them. I really appreciate you getting back with me.

    Thanks again


  • Did your insurance company pay for the stimulator? Do you mind me asking how much it was.?

  • My insurance did pay for it. Dr Benson's office did quote a price for the trial implant and when it was successful we met preapproval for the permanent implants. Since insurance paid, I really didn't keep track of it, but both the trial and permanent were covered and they take care of all the paperwork for you which is so less stressful. Also, I needed two implants as I have PN on both sides...many only need one implant. Please let me know if I can be of any further help. I pray this will be the answer to give you long awaited relief. Please let us know how you get along.

  • Thank you so much!!

  • I'm glad I reread my reply...I accidentally copied and pasted Dr Peters info twice. Below is my Drs info.

    Sanford Female Pelvic Medicine and Reconstructive Surgery Clinic

    Dr Kevin Benson

    1500 W 22nd Street

    Suite 402

    Sioux Falls, SD 57105

    Get Directions


    M–F: 8:00 AM–5:00 PM


    (605) 328-8750


    (605) 328-8751

  • Thank you!

  • Hello, hope I'm not bothering you. I wanted to know if you had really bad vulva pain and butt pain with your pundendal nerve damage.



  • You aren't a bother at all. I believe all things that happen to me can be used by God for good in some way. If I can provide you even a little help, it will bless us both...so don't hesitate in asking any question.

    Yes...I had really bad vulva pain and butt pain...8 - 10 every morning after I had sat for a short amount of time at work. Sitting on the toilet or hovering over a bowl of really cold water provided a little relief. But, once it had awoken for the day it was not going to quit. The only relief came by way of hydrocodone. I am still on a very, very small dose of that each day, but it isn't taken strictly for the PN. Dr Benson also diagnosed me with vulvodynia as well as PN. From what I have read, it is not unusual for these two ailments to coexist. I also have SI joint dysfunction with pelvic instability, which is also not unusual and contributes to pain by causing the pudendal nerve to be unable to glide as it should. With the vulvodynia, Dr Benson prescribed a very small amount of Estrace estrogen cream twice a week. It took several months before it improved at all, but patience won out and that has helped along with the Inter-stim immensely. I am a post-menopausal 60 year-old so depending upon your age, that may be a good option for you as well. The one thing you may not want to hear, but I feel obligated to share is a huge part of recovery, and I didn't think it was possible when I first was diagnosed, is stop sitting whenever possible. I thought how can I navigate through life without sitting? As I started getting my pain managed through the Inter-stim, I gained strength and am now able to stand at a computer station at work up to 6 hours per day. I literally never it unless I have to or unless standing made me feel extremely uncomfortable in the situation. For the most part I stand in the back at church. I have even been known to frequent restaurants only if they have the bar high tables so it is less noticeable that I am standing, if I am a passenger in the car I lie down, etc. I really don't think I would have made the progress with the Inter-stim alone that I have if I hadn't given up sitting for the most part. The Inter-stim is not a cure, but a way to manage PN. I feel like I am rambling so I will scoot. If you think of anything else, let me know.

  • Thanks so much for sharing. I am 55 and post menopausal. I even had my SI joints fused, it helped very little. I called Dr. Bensons office this morning and she said it would be able to get in at the end of this month. I just pray that it will give me a better quality of life. You are so sweet for helping me. I am very grateful.


  • It truly is my pleasure. That is SO encouraging Lanie! I will join you in that prayer that you will regain some quality of life...that's so important. I think I have an appointment with him October 26. But I have been spotting and and after quite a bit of testing I just found out I have utetine polyps and they will have to be removed here in Iowa, so I may have to postpone my appointment with Dr Benson. I am SO hopeful for you. Please let us know how you come out! Praying...Roxie

  • Dreambig...love that!

    I'm out the door for work...but I will email you before week's end. I'm so sorry for your extremely long journey of pain. That says a lot about you that you continue to search for an answer. I will be in touch!

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