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Anyone get PN Nerve Block without steroid?

jr188 profile image
30 Replies

Hello,

I have read various studies PubMed etc. that say there is little difference in pain result whether the nerve block is done with steriod or without. Just lidocaine. My pain doc has me scheduled for a block with just lidocaine, and I am wondering if that is just for diagnostic purposes. ?

I have already been diagnosed with PN, so not sure if that would provide pain releif.

Anyone else do a PN block without steroid, and how did you fare?

thanks!

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jr188
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30 Replies
Maria31 profile image
Maria31

Yes, I had this with no steroid earlier in the year. I had a temporary numb leg and a flare-up of my sciatica for two weeks or so but not much else and could still feel my pelvic symptoms ‘underneath’ if that makes sense. Due to my reaction we did not proceed to further treatment and I believe my issues are in part back related. Happy to elaborate if needed x

jr188 profile image
jr188 in reply to Maria31

thank you. W as this just to check for pn?

Maria31 profile image
Maria31 in reply to jr188

Yes diagnostic only.

Humming profile image
Humming

A nerve block without a steriod is usually for diagnostic purposes only. If you have no pain while the nerve is anestised then that suggests you could have pudendal nerve entrapment in the area that was anestised thats if it hit the right area when they do the block. There are various blocks they can do in different places. If you do have entrapment surgery maybe suggested. If it is negative which means you still experiece pain during the block then it suggests you havent got PNE in that area and an operation in that area wouldn't help. A nerve block with a steriod is for therapeutic purposes - it is supposed to reduce inflammation around the nerve and ease the pain for a temporary period. For most people i have spoken with (at pelvic pain clinics)including myself they didn't work however i am told for some people they do. In London they do blocks for therapeutic purposes in Nantes in France they do blocks for diagnostic purposes. I have had both and am considering a another block in a few months time in a different place. I hope that this helps.

Desperateforrelief profile image
Desperateforrelief in reply to Humming

Great answer. I agree 100%.

The lidocaine will wear off quickly. Diagnostic.

jr188 profile image
jr188

Thank you for your replies. The nerve block was confirmed and it will have both steriod and lidocaine. Perhaps it was for a different block. Anyhow, my mind waivers as to whether I should do it or not. I am on the books for it. A PN block.

Nursepb profile image
Nursepb

I saw a pundenal nerve specialist in Sugarland Texas yesterday. He wants to do a pundenal block. My pain started over the urethra and burning high in the vaginal where my TVT-O mesh is located . The burning was awful. I was bedridden but that has gone away for the most part . In the evenings sitting on a hard chair will start the burning sensation in the vagina . I have been doing pelvic floor PT and my hips are very uneven - since childhood. I was also under lots of stress - dad and brother died and I feel like I was tensing my buttocks unconsciously. I think my mesh was pulling on the nerves . I don’t want a block unless I know for sure it’s the nerves and not the mesh ! My insurance has a high deductible and pundenal specialist doesn’t even take it .

jr188 profile image
jr188 in reply to Nursepb

here...im.sorry to hear that. Keep up with the PT as it is effective

Desperateforrelief profile image
Desperateforrelief in reply to Nursepb

I had a TVT-O. I know the symptoms you are talking about. How long have you had the mesh? Please be careful with PT, it made me worse until the mesh was removed. Mesh can shrink, and come under tension. That is what happened to mine. I had it implanted in Jan 2008, worked excellently until May of 2009. The mesh had started moving into my urethra. You really need to see a specialist. Dr. Zimmern in Dallas TX is a great doctor. Uro/GYN. Feel free to ask me any questions. I am sorry you are going through this.

Nursepb profile image
Nursepb in reply to Desperateforrelief

I had mine put in December of 2009

Desperateforrelief profile image
Desperateforrelief in reply to Nursepb

Did you have these issues immediately after implant? I was also bedridden for 2 years. I am so much better than I was, but still my sex life has not returned. 12 years ago at 49! It has been a hard road, but I feel like I'm finally coming out on the other side. Get the block, worse case it will cause a flare for up to 10 days. But knowing what you're dealing with is essential. It definitely can be the mesh causing your pain. It could be the mesh damaged your pudendal nerve. TVT-O's were made to make it easier for the doctor to insert mesh slings. They go through the alcocks canal (which has several nerves, including the pudendal nerve). Mesh can migrate, shrink and a number of other things. This is a blind procedure they do on women, they measure 1 cm down on the thigh and aim. We are not "one size fits all", although that is the way the procedure is done. I have several friends and myself who have PN from this procedure. Doctors have been known to go through the PN nerve with this procedure. I did fine with it, until it shrank. I pray you find the help you need!

Konagirl60 profile image
Konagirl60

On what basis were you diagnosed with pudendal neuralgia?

Where is your primary pain? Is it exclusively in your rectum, both your rectum and perineum or elsewhere?

Are you incontinent with urine or stool?

Are you being woken up every night to urinate pain free while on the toilet seat BUT have terrible burning pain in your rectum afterwards?

I had PNE. My right pudendal nerve was pinched in three spots. I’m Canadian and I was brushed off and dismissed from day one.

My primary pain was in my rectum. The pain specialist said it was in my vagina when it wasn’t. As a result she did nerve blocks into my vagina with me in the lithotomy position with only anesthetic. I got no relief. She used no guidance.

The same pain specialist committed fraud and said she did a second nerve block with guidance ( she lied ) and used only anesthetic. She again had me in the lithotomy position and she injected my labia. I got no relief.

She claimed my pain went from 9/10 to 6/10. It was a complete misrepresentation of the truth. This was 9 months after being unable to sit without feeling electrocuted and having no sleep.

As a result my diagnosis was changed from pudendal neuralgia to vulvodynia.

I was very fortunate to get a proper CT-guided nerve block after my sister in law ( who I asked to be an advocate and come to an appointment with me ) watched the pain specialist completely disregard my request for a guided nerve block to be done into my buttock. My sister in law screamed at the doctor to order the nerve block stat !

I had researched that 77% of pudendal nerve entrapments are usually between or around the sacrotuberous and sacrosphinous ligaments. I was lucky that a visiting resident from Montreal got the right spot and the electrical shocks stopped.

The burning pain persisted as did the night wakings and severe rectal pain.

The B.C. Canada doctors refused to do the proper nerve block sequence that is done in the US.

I had to go to Toronto to see a neurologist who diagnosed me properly. He referred me to the best in Minneapolis, Minnesota.

I had a fluoroscopy guided nerve block into my buttock in September 2009 and he used both anesthetic and 30mgs steroid. I sat pain free for the first time in 20 months.

I was officially diagnosed with pudendal neuropathy and I was sent home with a treatment plan.

My GP yelled at me that she did NOT believe the diagnosis AND she told me my pain specialist had dropped me!

I was neglected, poly drugged and left in agony. By the end of 2010 I was feeling my life force draining. I knew I was going to die.

I prayed for an advocate as no one would believe me. My own family accused me of fraud.

My prayers were answered three days later. I met a registered nurse consultant at a health food store. She saw how awful I looked and asked me what was wrong.

I hired her five months later as two more specialists had brushed me off and she saved my life. She found out the doctors were lying and she spoke with the neurosurgeon who could say I needed to go to the US stat because no neurosurgeon in Canada did the surgery I needed.

I had the surgery 3.5 years too late. The burning pain is gone BUT the nerve has not fully healed and I have to be very careful not to sit too long, lift too much, bend over too frequently. I still require three meds.

I am lucky to be alive. I was abused, yelled at my by GP, defamed, mistreated and left to suffer torture. I no longer trust doctors.

Pattimoe profile image
Pattimoe in reply to Konagirl60

Hello again! I just happened upon this and read your story without realizing it was you. I feel so bad that you have to go through all of this. It’s torturous 💗

I did for many years, if you remember. I’m happy to report that I have no sitting pain anymore!! No idea what really worked for me but about a year ago I realized that I was pain-free for a whole day 😱 Started taking cbd and also Amitriptaline (for migraines) so my regular MD thinks it’s the Amitriptaline.

So sad you are still struggling. Praying for you, sweetie 💖

Desperateforrelief profile image
Desperateforrelief in reply to Konagirl60

I am so sorry for all you've gone through! I would like to report that pulsed radiofrequency ablation of the PN has given me almost 100% relief and I can now ride in a car all day without pain. I have only done this for a year, but the change is dramatic. FYI.

Desperateforrelief profile image
Desperateforrelief in reply to Konagirl60

I would like to add, B&O suppositories are a life saver for severe rectal/urethra pain. Nothing else touches that pain. B&O stands for belladonna and opium. Urologists tend to know about this med the most. A really good gyn also knows.

Desperateforrelief profile image
Desperateforrelief in reply to Konagirl60

I am so sorry for your pain and the extra pain caused by idiot doctors! Know that you are not alone! I've dealt with this treatment also. I had a reaction to the mesh, after it eroded, and I went yo a top specialist. I had a pathology report with me, it said "foreign body reaction". He took my report, shredded it with his hands and said that's a bogus report. You have internal shingles. They had removed a growth that hurt real bad. That was what the pathology report was for. I tell you, we have to be our own advocates. I have my husband with me all the time now. I get less flavk when he is there. During covid I saw a doctor, they would not let my husband in. I was treated horribly. We have to know the truth. We hurt, we aren't making it up. Etc. It is hard enough to find hrlo without having to fight the doctor as well. Hang in there!

Nursepb profile image
Nursepb in reply to Konagirl60

symptoms were burning pain over urethra and in the vagina . All cultures negative for infection. Now only burning pain in the vagina in the evenings after sitting . I use a donut pillow and am on meds . I also have tingling down both legs to my ankles .

EffieT profile image
EffieT in reply to Konagirl60

Your story is awful and I am glad after so much trauma, you were finally able to get a little relief. I live in Toronto and for 3 years have been looking for someone to diagnose and treat my pelvic pain. Aside from my Pelvic PT, specialists have been useless. Unfortunately, Dr Antolak has retired but I'm looking for someone else in the USA since I don't think I will be helped in Canada.

Konagirl60 profile image
Konagirl60 in reply to EffieT

Dr. Hibner in Arizona or Dr. Conway in Nashua, New Hampshire are the doctors whom Dr. Antolak trusts in the US.

EffieT profile image
EffieT in reply to Konagirl60

Thank you so much.

Konagirl60 profile image
Konagirl60 in reply to EffieT

You are welcome. I have the names of the two doctors in Europe he trusts should the above two not be able to help you.

EffieT profile image
EffieT in reply to Konagirl60

Thank you again. I hope I don't have to take you up on that!!!

jr188 profile image
jr188

I had PN in 2011 and went to pt, specialists and recognized the symptoms when i had burning tgis August. I have not been able yo have sex for yrs as it burned. I cant sit for long and thrre is pain in the perineum area. Im sorry for all you went through.

Desperateforrelief profile image
Desperateforrelief in reply to jr188

Can you please tell me what tgis is? Thanks.

jr188 profile image
jr188 in reply to Desperateforrelief

sorry, typed it wrong. this.

Desperateforrelief profile image
Desperateforrelief in reply to jr188

Thst makes sense. I was really tired. Lol, I make a lot of the same mistakes. I highly recommend pulsed radiofrequency ablation of the pudendal nerve. It has been a game changer for me. It has reduced my pain by a lot. I get burning, stabbing, aching, etc. Sometimes it feels like my private parts are in a vice. I too have not been able to have sex. I am hoping for this to change. But it's been 12 years now. The first session gave me 100% pain relief for about 4 months, then gradually declined. The nerve grows back. Pulsed radiofrequency is not the same as radiofrequency ablation because it heats the nerve vs killing it (they burn it without the pulse). I have had both kinds of ablation. They gave me radiofrequency ablation for my coccyx. That hurt for a few days following procedure. But now I have 0 coccyx pain. It was pretty severe, keeping me from being able to sit. These nerves will grow back and I may need to do the procedure again. It does sound like you have pudendal neuralgia. I get perineum pain as well. Mine was due to severe mesh complications. I sure hope you find answers for your pain!

Pollywobbles profile image
Pollywobbles

Hi. Can you tell me a bit about your symptoms please and how you ended up with Botox? I’m thinking about asking for this. Is it still working and do you get a flare up afterwards? Thanks

Pollywobbles profile image
Pollywobbles

Hi jr188. I was wondering how you got on with your lidocaine injections. I’m having a couple in two weeks time. I believe the steroid caused the irritation to my nerve in the first case as I had a couple of injections in my legs. All of a sudden I had this terrible pain and it got worse and worse until I had every symptom of pn going. I also self diagnosed as my pain consultant didn’t know what was wrong. I’ll let you know how mine goes. I hope they last more than an hour! 😊

jr188 profile image
jr188

Hi Pollywobbles.My nerve block was with steroid and lidocaine. Had it done 2 weeks ago. They had me wait afterward in case my leg was numb. Side effects. Etc. I had no numbing and didn't feel different. Was very disappointed! Two weeks later I am having better pain days, with more at a 4/5. I'm also going to PFPt. Oh, I'm sorry to hear of your symptoms. Are these trigger point injections with lidocaine or nerve block? I wish you the best!

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