Lidocaine Caused Burning

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Someone said this already about the burning indicating neuroproliferative vestibulodynia and I can attest!! My pelvic floor PT who is treating me post op vestibulectomy said very rarely has she seen post op patients have the same burning to lidocaine they once did before the surgery. And I can attest to that too! Pre surgery it burned SO BAD and I couldn’t handle it. Now when she put it on for one of our sessions in the same exact vestibule region I was so scared it was going to be horrific again and I literally felt NOTHING. Like a normal person I just felt the gel sensation that’s kind of cool and that was literally it!!!

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u/vicariouslyhaunted 23d ago

Wow that's amazing

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u/LibrarianExcellent80 23d ago

It is!!! Seriously was in denial lol I was like “Wait are you sure that q tip has lidocaine good clean love??” But sure enough it did!

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u/vicariouslyhaunted 23d ago

Did you need to find a special PF PT to help with post surgery dilating?

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u/LibrarianExcellent80 23d ago

Yeah so I’d do A TON of research because since this issue and surgery is still so new medically speaking you just have to do your research when choosing a PF PT post op. Thankfully my PF PT actually was the one who unofficially diagnosed me and sent me over to Irwin Goldstein because she works closely with him! So of course I wanted to do my follow ups with her. Dr. Goldstein was even like, “I don’t mind if you see her at 4 weeks!” I saw her at 6 weeks still though haha. But she’s awesome! Unfortunately they don’t take insurance, but I’m at a place right now where I’m not paying rent while working so I took the option with her. Otherwise, I would’ve done more research.

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u/vicariouslyhaunted 23d ago

Hm I wouldn't even know where to begin. Maybe a post in here asking others who they went to. I'm not ready to get evaluated for the surgery yet, but that's good info to have. Thank you

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u/LibrarianExcellent80 23d ago

Yeah of course! If I were you or if I were in this situation again where I had to look for pelvic floor therapy post op I would have started by seeing my ob through my insurance (so it gets covered) post op and ask to get a list of PF PTs she could refer me to in network. Then I’d study that list and send emails and ask if they have an understanding of pelvic surgeries and vestibulectomies at all.

If you didn’t care about getting it covered and were just seeking someone who is an expert (similar to mine) I’d happily email her for you or you could email her yourself for people she knows in your area! Her name is Jandra Mueller with SheFit physical therapy in San Diego. You could find their website and email her asking for recommendations near you. She’s actually very well networked!

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u/vicariouslyhaunted 23d ago

That's a great idea. I don't mind paying out of pocket if it's an expert. I have a PT right now, but I'm her most complicated case and her first neuroploriferative vestibulodynia patient. I'd much rather get PT from someone who knows how to manage post surgical care

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u/LibrarianExcellent80 21d ago

Yeah totally hear ya! I’d even go for someone who has at least had experience with transitioning surgically (male to female) patients because it’s the same type of post op care in a way (working through scar tissue in the right window before it solidifies and causes pain in the future).

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u/Safe-Veterinarian-56 23d ago

Ugh this is good to know but also upsetting bcuz i really was hoping i wouldn’t need the vestibulectomy:(

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u/LibrarianExcellent80 23d ago

I know :( Unfortunately there hasn’t been any proven conservative measures that actually permanently fix the issue at the root. When it’s nerve issues how much can creams and meds really even do except make the symptoms better as long as you’re on them? I had to make the decision for myself as a young (23 yr old) married woman who wants kids in the future. I can’t be on a ton of meds to make me feel slightly normal, especially if I’m pregnant or breastfeeding. That was just how my husband and I made our decision though!

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u/Safe-Veterinarian-56 23d ago

I’m 26 and been dealing with this since 20 😭
I’ve tried amitriptyline and gabapentin. Neither touched my pain
Now on cymbalta only a few weeks but 0 pain relief. What i don’t get is if my issue is nerve related wouldn’t these meds help at least a little?

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u/LibrarianExcellent80 23d ago

I totally hear you and your pain friend😭 I tried amitriptyline too, but the problem with this is that it’s not just nerve issues, but horrifically unstable nerve proliferation. Translation: NERVE CHAOS. The issue I had found too was that applying things to the vestibule burned even MORE so it just wasn’t worth the pain for a coin flip chance it would help with the symptoms. Maybe in other cases of neuropathy those things would work, but this is neuropathy on steroids in an area that even at normal baseline already has so many nerve endings and much more sensitivity than any body part. That’s why it feels like certain treatments barely make a dent if any at all :(

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u/Safe-Veterinarian-56 23d ago

How was recovery for you? And how long?
Dr Goldstein recommended the surgery for me but he allowed me to join the ketotifen study. It doesn’t burn me at least but no way of knowing if i have placebo. He also offered capsaicin cream but that sounded like hell. :(

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u/LibrarianExcellent80 23d ago

Oh my gosh yeah that cream does sound AWFUL. And yes I heard about the study! Like I said for myself though I’m married and want to have kids soon so it was really frustrating dealing with this issue without hope for a permanent cure. My medical leave from work was 6 weeks. I just had my surgery on March 13th of this year! I’m recovering beautifully (slowly but surely). I had the buccal graft as well as the PUG removal like the whole entire deal! I still have more so sensitivity toward the upper part because of the PUG but my vestibule part feels INCREDIBLE. I’m working through scar tissue but it’s amazing how it just feels tight and sore when I do exercises but doesn’t burn at all anymore!

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u/Safe-Veterinarian-56 23d ago

That is amazing I’m so happy for you! My bf and i are also heading towards progressing our relationship it sucks so much not being able to have pain free sex and I’m so depressed from this condition. I’m highly considering the surgery. 6 weeks of recovery vs years of suffering
Did you ever try like the topical amitriptyline gabapentin creams?

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u/LibrarianExcellent80 23d ago

Thank you!! Yes I totally get it! It is SO depressing sometimes especially when you’re with someone you love. I did the amitriptyline/ketamine cream and some estradiol cream for like at least 3 months but I only did it because Dr. G told me that sometimes there’s a miraculous case where it gets cured for no reason with that as like a miracle. Otherwise the creams in general are not meant to cure, they’re meant to just ease the symptoms until you stop using it. I don’t think people really understand that. And I thought to myself do I really want to be dependent on creams for the rest of my life??? And when I told Dr. G that I want to get pregnant and have kids he was like oh yeah you can’t use that stuff when pregnant. So I had to come to terms with needing the surgery instead of having a horrific pregnancy where I have to get off the stuff that’s masking my symptoms. That just didn’t sound like living for me personally as a root cause person. I think the surgery is TOTALLY worth it.

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u/AdLittle6433 25d ago

Same lidocaine burns

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u/vicariouslyhaunted 25d ago

I learned the hard way :(

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u/Bakingsomecake 25d ago

I think lidocaine causing burning can be pretty common in people with vulvar pain issues, but burning upon application of lidocaine is specifically a sign of neuroproliferative vestibulodynia that can sometimes be considered in the diagnosis process.

However, many topicals can cause burning, especially in those with neuroproliferative vestibulodynia, and this can even be due to inactive ingredients (such as the cream vehicle).

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u/vicariouslyhaunted 25d ago

Makes sense. Well, I do have neuroploriferative vestibulodynia and the lidocaine only made things worse. I had to wipe it off. I got no numbing effect from it

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u/Bakingsomecake 21d ago

Interesting. When I was treated by Irwin Goldstein, they did a test to put numbing cream on the vestibule to see if the pain changed or went away. According to them, if that numbing takes the pain away, then the root cause is surface nerves (neuroproliferative vestibulodynia). If it doesn't, then it points to something else (such as pudendal neuralgia, deeper nerves). But what you did at home could be somewhat different so I'm not sure. Just sharing in case this is helpful. It can be so hard to figure out exactly what's causing the pain.

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u/vicariouslyhaunted 21d ago

Others in the comments seem to have similar experiences to mine.

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u/UnablePomelo913 24d ago

Lidocaine can cause severe irritation of the vulvar mucosa. In my case, the irritation following the application of a 5% lidocaine ointment was so severe, that I had to be admitted to a hospital. Since then, I have reacted to all topical medications with severe burning, including the estriol ointment, which had provided me with significant pain relief for years. Without the estriol ointment, I have now been bedridden for a year. So please be careful with topical lidocaine; it has ruined my life.

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u/vicariouslyhaunted 24d ago

Fuck. That's horrible. I only tried it the one time yesterday and I won't be using it again.

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u/mercmcl 24d ago

I had better luck with prescription lidocaine jelly rather than over the counter products with lidocaine, which irritated the area. I use lidocaine 2% jelly available by prescription. This one is not irritating for me.

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u/ImpressionCorrect437 22d ago

Had the exact same lidocaine gel from that brand with 4% you had and I also experienced burning after use and it also did nothing for my pain sadly. Still no clue, why it does not have a numbing effect for me at all.

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u/vicariouslyhaunted 22d ago

From what I'm gathering, neuroploriferative vestibulodynia is the cause

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u/ImpressionCorrect437 20d ago

Yup I’m guessing that’s what I have also, sadly very complicated to deal with.

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u/vicariouslyhaunted 20d ago

It sucks. I'm considering the surgery at this point

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u/[deleted] 22d ago

[deleted]

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u/vicariouslyhaunted 22d ago

It burned so bad even after 15 min that I had to wipe it off. It also didn't numb at all

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