I need help with placement for my tens unit for PN

[Luvpups]

Hi there...

I’m Dawn I’m new here, I’ve been diagnosed with pudendal neuralgia!!!! Yay for me!!

I’ve been experiencing symptoms for almost 6 years!

I’ve tried the nerve blocks, an ablation (radio frequency) Botox in pelvic floor...I went to PT for 9 mo and it did help!!!!

I was denied by my insurance co for DRG which was a real disappointment!

I’m currently waiting for my tens unit and I’m looking for specific help placing the leads🤷🏼‍♀️

My pain is right ishium vag/rectal pain I’m about a 6 on the pain scale most days...

I take Lyrica tramodal and Norco and use Valium suppositories that are coumpounded.

Any help or advice would be great!

[Pinky2233]

Regarding tens unit, I just had someone show me. I’m told the burst is best as it breaks up the nerve path signal. There are 3 places I was shown. The first is around the inner bone of the left ankle. That was first and foremost. The second is crossing the black and the red above the pubic bone and the third is at the lower back also, crossing red and black opposite each other at the base of the spine very low.

Hope it helps

[Lexi1221 in reply to Pinky2233]

Did that help you? What is your situation for lack of a better word, sorry.

[Luvpups in reply to Lexi1221]

Hi there sorry it’s taken so long to reply!!!!

You need to find a dr whom specializes in diagnoses in pelvic nerve pain...I saw Dr Mario Castellanos he was the dr who diagnosed me and he did my Botox and also scheduled my nerve blocks he also was the first dr to RX the compounded rectal suppositories for me (diazepam and belladonna) they r not covered by insurance and can be pricey!!!! Much cheaper in AZ then LV

My symptoms have a muscular component so for me they are so helpful!!! If you are one whom just suffers nerve pain....after pelvic surgery or an accident or activity they may not be as effective!

It’s been 6 yrs for me and basically my days are good my pain is managed most days but there have been many lifestyle changes that are sad 😞 but I am feeling somewhat better!!! Please take care and ask me any questions you have???? Honestly this is the only forum I belong to and I have no idea how to DM!!! I’ll check back daily to see if you have any questions for me♥️

And yes my dogs and hubs and kids are my world! Maybe not in that order Hahahaha

[Lexi1221 in reply to Luvpups]

Thanks for getting back to me. My pain came on for no reason. Very weird. I’ve been to many pelvic specialists. Had Botox and nerve blocks. Tried Valium suppositories. Nothing. Actually thinking of going to the Mayo Clinic. Where do you live? You said a dr that specializes in Pelvic nerve pain, is that different than a pelvic pain dr??? I think it’s nerve pain that I have, very hard to treat. That’s why I did the implant the second time.

[Luvpups in reply to Lexi1221]

Hi there!

I went to Phoenix Az to get my diagnosis confirmed! Dr Hibner is the head of the practice. At my first appointment I had a gentle pelvic exam by his PT she was wonderful all my weird symptoms were completely normal she wasn’t wide eyed or shocked like most of the medical professionals I’d seen before!!!

I live in Vegas and was recommended by my pelivic floor PT that I go see dr Hibner. I know there are other physicians that treat and diagnosis but there are also other nerves that intervate the pelvic floor! Diagnosis is key to treatment!!!! I did need a referral from my gynecologist, she was more than happy to refer me she didn’t know what was wrong!!!

As always please ask any questions!

Dawn

[Lexi1221 in reply to Luvpups]

Funny we were thinking of moving to Vegas. What part? What kind of dr is he? Is he part of a clinic? I was actually thinking of going to the Mayo Clinic. I would fly to AZ in a minute if I thought he could help.

Marcia

[Luvpups in reply to Lexi1221]

The practice is a gynecologist that specialize is pelvic pain....particularly nerve pain they also treat IC so basically the “pelvis” look at the dr website dr Hibner has also written papers you can read online about nerve pain! He is highly recommended on the west coast! They r surgeons and are known for decompression surgery he has perfected the surgery he learned in Nates France. Pudendalhope has been very helpful for me!

Vegas is great I was born here!!!

[anne77 in reply to Lexi1221]

I have been to he MAYO Clinic in Jacksonville, FL and PN is something that they aren't that familiar could not help me. They then want you to do an intensive 2 month outpatient program which is supposed to help you learn to live with the pain. My insurance wouldn't cover it, but I made the decision not to do it anyway.

[Luvpups in reply to anne77]

Hi again!!!

Have you looked at the pudendalhope website??? They have a list of dr that treat PN on the west coast take a look there could be help near you!!! Never give up trying to get batter♥️ Dawn

[Mommy5x in reply to Lexi1221]

My pain was first attributed to menopause

Uterus ablation. D&C for thickening of the lining of the Uterus. Leg pain, pelvic and glute pain. Dr. Mario Castellanos at Dignity Health in Phoenix suggested bilateral pudental nerve blocks. I have lost count of how many times I've had them

Just got off the phone with his PA and discussed RFA. I have another nerve block next week at Dignity St. Joseph. Also ask about Amniofix. If you can go see Dr. Castellaanos definitely do it. Contact info is 602 406 6017.

[anne77 in reply to Luvpups]

I am confused, is Dr. Castanellos in the same group as Dr. Hibner? Who did the nerve blocks, and do they do MRNs? I

[Luvpups in reply to anne77]

Yes....I accepted an appointment with Dr Hibners associate Dr Castallanos because he was available sooner...there was a 2 mo wait for an appointment! He did my Botox but the Anesthesiologist does the nerve blocks they are CT guided and done in the hospital as out patient surgery. I did not have an MRN just an MRI

My diagnosis was confirmed based on general symptoms, during the pelvic exam it was thought that my coccyx and sacrum muscles were pinching my Pudendal nerve.

This was over several months!!! With all three of my PN blocks I was initially numb for a min of 8-12 hours unfortunately with each I really flared and they never kicked in much! The Botox was under general anesthesia and that also flared me for a few weeks then I did have some relief. Unfortunately it was not very long lasting. I also tried Radio frequency abliation that also just flared me! 👎🏼 I highly recommend them if you live nearby

This practice is mentioned on a website called pudendalhope check it out...I also found a podcast where dr C is explaining different nerve conditions of the pelvis these guys are gynecologist 😊

[anne77 in reply to Luvpups]

Thank you for the explanation. I have read about Dr. Hibner, and even considered getting a consultation with him because my sister lives in Phoenix. I live in FL and have had 1 nerve block at the Mayo Clinic with a radiologist there, with the same outcome as you! I also saw a Urogynecologist there, and worked with her pelvic pain therapist, but it not only did not help me, but really flared me up! So, are you just managing your pain with medication, or did Dr. Hibner and Dr. Castanellos suggest any other options i.e. (did they suggest the tens machine ?) I have read about Radio frequency ablation, but I haven't tried that yet. The meds I'm taking help take the edge off, but my pain never goes away except when I am sleeping I hope the tens machine helps you-keep me posted!! Thanks Again Anne

[anne77 in reply to anne77]

Oh, one more question--where did they do the botox injection? Also, I have found the pudendal hope site, and it's definitely a great source! THX

[Luvpups in reply to anne77]

The Botox was done by Dr Costellanos (gyn) under general Anesthesia in a hospital as out patient surgery!!!

Before the Dr C felt deep in my pelvis right before my Botox procedure just to make sure he knew where to focus the injections...he injected 200 units into my pelvic floor!!! Afterward in recovery I felt like I had given birth to a 15 lb baby I had bleeding for about 3 days of course I flared for a few weeks and it did help but it was short lived!

Currently I take it easy lay down when I can (I had to give up my Carrer) and be consistent with my meds and stay one step ahead of my pain....some days that means I’m heavily medicated but I’d rather take the meds then not live...I spent the first 2 years of onset of symptoms in bed literally!!! I was sent to specialists and no one knew what to do for me!!! “ I kept saying could this be Pudendal Neuralgia????? None of the drs knew!

I did my own research and compared symptoms. My pain management Dr has been a great help!!!

[Luvpups in reply to anne77]

Hi Anne so glad you took a peak at the pudendalhope website there is a lot of helpful info and the latest treatments also!!!

I see a pain management Dr and asked him for the tens unit!!! I figured it would help the tight muscles I have in my buttocks and hips!!! I know it’s all interconnected to the PN

My pain management Dr diagnosed me with CRPS basically means my nerves are wonky!!! The tens unit I have is called ZXNEX it has 3 different types of stimulation ICF, TENS and NMES I’ve been sleeping better since using it!

From what I understand the longer you have PN the harder it is to turn things around also if the PN was caused by a surgery or after giving birth or due to an activity “”(heavy weight lifting) the more likely the decompression surgery will work!!!

I’ve accepted the fact that I’ll have this for life and will never stop trying to improve my symptoms!!! The medication is helpful for me I’d say the only time I’m truly pain free is while I’m asleep! 😂

Dawn

[Luvpups in reply to anne77]

So sorry I said Anesthesiologist did the CT guided pudendal nerve blocks when actually it’s a radiologist!!!! Oops wrong dr!!!

[Luvpups in reply to Pinky2233]

Thx so much♥️

[Luvpups in reply to Pinky2233]

Thx Pinky2233 I’ll try it!!! I love my tens unit!!! It has helped my tight hips and low back pain!!!! Thx so much♥️

[Jas123 in reply to Pinky2233]

Did the TENS device work for you?

[Lexi1221]

How do u know if you have prudendal Neuralgia? How diagnosed? I have vaginal and rectal pain and burning. I’ve had it for 14 years. Honestly if my pain level was a 6 I could deal. All these years I’ve been diagnosed with pelvic pain. I’m on my second DRG now, done differently than the first. I knew from the start it wouldn’t take a lot of the pain away. I just needed something. Besides that I’m on 2300 mg of gabapentine, and 150 mg of nucynta. Pain meds really don’t help nerve pain but right now I’m on it anyway. I’m totally frustrated. I’d love to talk to you. Don’t know how to private message so I can give you my #. Do u? Love your dogs by the way😊

[Luvpups in reply to Lexi1221]

I re read your message 14 yrs Lexi I am without words!!! I’m so sorry you haven’t found anything that helps!!! The combination of 25mg Lyrica and 300 mg Tramadol and 7.5 Norco when flaring and the suppositories really do help!!! I’m 55 retired so I do lay down and rest ugh!!! I hate resting...I prefer to be on the go!!! I was a hairdresser before this all hit!!! Lived my career and wasn’t planning on retirement!!!! Haha!

My basic symptoms are rectal/vag burning right ischium pain and soreness urethral burning and spasms!!! PT helped some I was riddled with trigger points throughout my pelvic floor...although very painful when the PT released them I did feel better!🔥 I was turned down by insurance for the DRG so disappointed!

Hope that answers some ???s

Take care I’ll check back soon♥️

[Luvpups in reply to Lexi1221]

Oh yes that gabapentin is the devil that stuff made me feel weird 👎🏼 the Lyrica is better for me!!! 259mg it did make me sleepy for a few weeks but I feel normal now also I take a time released 300mg of Tramadol 👍🏼

[Luvpups in reply to Luvpups]

250 mg if Lyrica

[anne77 in reply to Luvpups]

Hi Luvpups, I also take 250 mg Lyrica a day and have tried gabapentin. I also have a script for Tramadol, but haven't filled it yet. Do you take the tramadol as needed or regularily each day? I wish the Lyrics wasn't so expensive, but having tried both, I feel that Lyrica is easier to tolerate.

[Luvpups in reply to anne77]

Hi there!!!

Yes everyday after breakfast I take the 250 Lyrica and the Tramadol 300mg time released!!!

The way my pain management dr explained it was with such a painful disorder I need proper successful pain management...made sense to me! I do remember feeling sleepy the first few weeks after taking it!

Go to the Lyrica website and print out a coupon! You can use it every time you fill it! I pay $35 for the Lyrica

Good luck!!! I always tell myself if I don’t like a medication I can always come off of it slowly! We all have nothing to lose 🙃 I am willing and have tried some weird stuff for my nerve pain!

Good luck 😘

[Luvpups in reply to Luvpups]

Oh I do take the 250mg of Lyrica at bed time too! That and a muscle relaxant 4 mg Tizanidine....I’m sure that is a sissy dose!!! I’ve been taking it for years to help me sleep! Who knows if it does anything!

[Lexi1221]

Does the Valium suppositories help you? I tried them it didn’t do anything. I do still take Valium but orally

[Luvpups in reply to Lexi1221]

What was the RX ???? Mine are 10 mg diazepam

[anne77]

Thanks for all of the information! It sounds like you have a system down that is helping you to control the pain Thanks for sharing!

[Luvpups in reply to anne77]

I wish I had things under control!!! Today is a bad flare day 🤷🏼‍♀️ if I knew what caused it I’d certainly change it!!! I seem to have pain upon basically MOVING???? Does anyone else feel this way!!! I am currently laying on my heating pad....I should be getting my face painted for our annual trunk or treat!!! I guess it’s a Norco day!!!! 🙃

[anne77 in reply to Luvpups]

I get flare ups too from time to time. There seems no rhyme or reason for when they hit, but they put me in bed too Feel better soon!

[Luvpups in reply to anne77]

Thx♥️it helps to compare symptoms and it truly helps to know that we are not alone in this very strange and difficult to explain disorder!!!! I hope 🙏 you have a pain free weekend!

[Luvpups]

Has anyone used rectal suppositories with Belladonna and Opium???? Curious if anyone had any long term affects??? I had eye sensitivity weird right????