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Also, I had a T3 MRN at UTSW hospital and it showed increased nerve activity in the nerves, but it didn’t and can’t really show why. I wouldn’t put so much stock in imaging. The doctors at UTSW and PRM were both Physiatrists. UTSW was not able to help me despite them being the top hospital here and a teaching hospital. I got better treatment and results by going to a smaller organization. I also saw other departments at UT. They’re good for things like rheumatology and neurology. I also saw neurologists who had no idea what to do and was told pelvic nerves weren’t part of their specialty. That’s how I was referred to UT.

⁠​⁠@@michellebranch7543I’m looking for imaging because if there are local findings I will know it won’t be a good idea to continue to try more holistic or centrally targeted pain treatments, and I should instead invest my resources in local treatments. I’ve done a lot of both already and none have helped and I do think it’s important to know if there are any local findings that might guide my decisions for example like whether to try transcranial magnetic stimulation or try PN cryoablation next. I’ve looked into PRM and they look to be describing transgluteal pudendal nerve blocks as their main treatment protocol. My injury was about six inches away from that injection site, to my dorsal branch area, and the transgluteal PN block I had didn’t help. Neither did the transvaginal or dorsal branch block. Well, they all helped temporarily while lidocaine was active . I’ve actually had lots of sessions of injections of combos of steroid, lidocaine, Botox, and even PRP injections. None of these things have helped beyond the effects of local temporary numbing from lidocaine. Unlike the majority of PN patients it seems, I don’t have issues back by Alcock’s canal or between the sacrospinus/sacrotuberous ligaments, and I don’t have a pelvic floor muscle component to my symptoms. But I’m really glad they were able to help you!

Was their treatment protocol with you a series of nerve blocks and pelvic PT or did they do something else? Thanks

Hi. So, I did 7 weeks of weekly injections three times about 6 months apart. I had tried other “nerve blocks” before without success. The series works differently from single blocks, according to my understanding, by giving the nerve some room to heal by injecting around it over the course of weeks. They also inject as their pulling the needle out, so that you get that space along the length of the nerve. I had damage to all three branches. I had the injections done front and back and on both sides. Both sides because all of the nerve issues caused lots of PF dysfunction. And that in turn made my nerve pain worse. I also had a crossover of nerve pain. Pudendal led to ilioinguinal, obtruator, hypogastric, etc. I developed nerve pain in my inner thigh as well. I believe my situation became as bad as it was because I didn’t get the correct diagnosis for over a year, I was told I’d never heal and I’d live in that much pain until I died, and I tried pelvic PT way too soon when my nervous system was in overdrive and my injuries were too fresh. I also had a few terrible experiences with that kind of PT. PTs are great a lot of the time, but I feel too often they are glorified personal trainers who want very much to be considered doctors. I was being treated partly with needles inserted into my sensitive areas with a powerful TENS unit attached so somehow release the muscles and nerves from the pain cycle. I did do PT through the first series of injections but after giving it two years I quit and never went back. I actually used some info and videos from YT to help me with movement and fear of movement. I’m probably going g on way too long and forgetting a lot. Let me know if you want any more info. Best wishes for healing!

Thank you so much for sharing this. I can’t get cryo in CA with insurance but I have definitely been looking for providers and considering this possible treatment. I really appreciate you sharing that it helped you. How many times have you gotten done? Tu inglés es perfecto pero si quieres puedes escribir en español, yo vivía en Madrid por un rato y puedo entender español:)

De nada! Si puedo ayudar, con gusto lo haré. Desde que nació mi hijo, quedé con mucho dolor pelvico del lado izquierdo. Tuve estallido vaginal, las cicatrices, todo fue demasiado trauma para mi pelvis. He ido con fisioterapeutas, traumatólogos, ginecólogos. Ninguno me daba una solución. Aparte del dolor del pudendo, también me dolían los nervios iliohipogastrico, ilioinguinal, genitofemoral y el sacro. Me hicieron crioablacion de todo, también infiltraciones de corticoides en sacroiliacas. Allí no acaba mi aventura, en 3 semanas me harán crio del nervio obturador. Y si, me toco toda la mala suerte a mi😅 Lo del pudendo es la primera vez que me lo hacen, llevo aguantando todos esos dolores 10 años, también tomo diazepam. Aquí en valencia en IMED de burjassot fui a la unidad de dolor y el doctor es un ángel! Yo ya no podía vivir así con tanto dolor. Ah por cierto la crío de pudendo vale 4 mil euros, más o menos. Te digo porque se la pesadilla que es vivir con esa tortura.

I made a video discussing my experiences and outcomes of 3 PN blocks

Yes he was not able to help me. I do not have entrapment at alcocks or between ligaments or anything like that

@@matthewprzystup998 I did see him, he can’t help me. I don’t have PNE

@@matthewprzystup998 ruclips.net/video/SX5PHeTJ6uw/видео.htmlsi=y_jl6Sjb80xvS4Wz

@@matthewprzystup998 oh which doctor? I saw one but she was a urogyn, and her treatments didn’t help. TBH my injury is so unique and there is no one actually doing the procedure I would need at this point (neurolysis or removal of just the right side dorsal branch innervating a specific area)

Yes! I address that in a few videos and in around 2 mins on this one. I think they are able to help the folks who have these issues from pelvic floor muscle dysfunction who just need to learn to relax their PF muscles. Or as it often turns out, people who are simultaneously also addressing other route causes medically like with hormone replacement. Or as I’ve noticed, the success story isn’t actually the whole story and people’s pain isn’t really gone or it comes back.

I really hope you find something that helps you soon ❤

@@maggiesworld. omg! That’s so wrong. I am reading Rachel Gross’s book Vagina Obscura. There is a long history of believing bizarre and insane things about female anatomy, that comes from thousands of years of fear/ignorance of female bodies. :(

@@RoxyHeartt for me part of the combo of IC/vulvodynia pain was hormonal, basically GSM in my 20s/30s from using the pill. Have you been able to investigate this path yet? Thank you for the comment and I am hoping you find answers. Many people really do either get better or improve enough to live a good life again ❤️

@@mysecretlifeofpain excuse my ignorance but what is GSM? I was on topical Estrogen topical cream for 4 months sadly no success. My pain seems to be at the entrance mainly. Thank you for the video. It makes the world of difference because it’s easy to feel very alone and it’s so expensive going to specialists and also disappointing which is why videos like this are so important! Should I ever find something that’s helpful I will revert back and share it.

Ps: I was also on the pill for 10 years 😔 went off of it as soon as I started the pain flares 🔥

@@kostaborojevic498 Some people do get better. It seems to happen in a few different ways. Some people get treatments and medications that reduce the pain and symptoms enough that they feel okay. So far I am none of the above and surviving by thinking with just a shred of hope that there is still something I can find somehow that will make this improve…it helps me to think “if this is going to kill me, let it kill me trying to get better.” That makes me feel like I cannot give up until I’ve tried literally everything

I’ve stored the dried caps with dessicant sachets for months, and just made the tea on a monthly basis, stored in fridge OR frozen. I think when frozen the tea is good for a very long time. I think to level up I’d have to learn more about using commercial preservatives. Another stop gap might be buying AM tinctures, there’s a handful of companies in the US making products. I think they are usually very/fully decarboxylated (no ibotenic acid) l

Dry it then store it in a dry place and make tea when you need it.

Did you watch the whole video? It did not work for me. I have had numerous injections with steroids. I’m glad it helped you.

@@cliff_fall you’re welcome! Thank you for liking and supporting my channel.

No, I don’t have entrapment at least as it is currently diagnosed and treated- near Alcock’s canal, between the ligaments back there, etc. If I have entrapment it’s on the dorsal branch and likely microscopic

@@mysecretlifeofpain do you get pudendal nerve pain?

@@nawluck yes this is a pudendal neuralgia channel I have it 24/7 since a surgery

Any thoughts on stem cells for PN?

@ I wish there was more data and more diagnostic information available to us. I got PRP injected into my painful tissue where my skin was damaged in a surgery but it didn’t help. I know they’re not exactly the same thing but both “regenerative.” Since there are so many ways to irritate or damage the pudendal nerve, I think it would impact when and how stem cells could be effective. Are stem cells only working when there is some sort of destruction to nerve fibers? Do they need to be injected directly where an initial injury occurred? Do they have pain relieving effects independent of what is causing pain signals? I have many questions. I had the opportunity to try Amniofix, which had no information on it for PN and my doctor wasn’t able to explain to me why it would help, how that would work. So I didn’t try it because it was massively expensive with no data. When the answer is just “oh, it’s healing, it heals you.” I am skeptical at this point. Especially when no tests are being done to confirm dysfunction or damage. That doctor would have injected me around Alcock’s canal and far from the location I feel my pain comes from.

@@martinmalloy8264 this is definitely the case for some people, but it is not applicable for me unfortunately. I have been discharged from pelvic PT with a perfectly normal pelvic floor. Also tried multiple rounds of pelvic muscle Botox, muscle relaxers that had no effect. I have nerve damage from a tissue crush/stretch injury in a surgery, no muscles involved.

Yes. I do those exercises it reduces the pain. Not at sudden it may takes some time.

@@williamblair1123 thank you! And thanks for leaving a comment. Sorry you’re also in pain. How will you do the vagus stim? Ear clips?

@@mysecretlifeofpain I'm not in pain, per se. I have some ear clips but they don't seem to be doing anything. What am I supposed to feel by using them, as it relates to the vagus?

It’s horrible I know, mine has been resistant to intervention as well. I hope the TENS brings you some relief

@@mysecretlifeofpain I just finished 8 months of PT, with no measurable benefit. The PT was $110/week! Mutual decision was not to continue as it was wasting their time and my $. Tried a nerve block but the results were not long lasting. This pain is literally destroying my life.

@@DelmarksmanI understand your frustration. I did 6 months with a really knowledgeable PT who at first seemed convinced my PN was caused by thickened connective tissue back at ischial tuberosity and fascial adhesions (despite my pain starting immediately after an invasive surgery). But treating that made no difference and I was discharged :(

The original advice I got was at night. I couldn’t sleep, it made my thoughts race. When I switched to the morning I felt energized by it and then I didn’t have sleep issues. I recommend joining the LDN for chronic conditions FB group they’ve been very helpful for me ❤

It’s really terrible…I’ve gone through so many *different* pelvic issues and found ignorance and error pursuing treatment for all of them 😢 I hope you find knowledgeable practitioners soon! If you have vulvodynia I recommend looking in to providers that specialize, they will often call themselves “sexual medicine specialists” or “vulvovaginal disorder” specialists

Yes, nerve blocks definitely don't treat most of the root causes of PN. I wish my doctors had not acted like they were a treatment. I've seen articles suggesting that sometimes people experience relief from a block more due to the action of the needle puncturing the muscle, where it would act similar to dry needling and cause a twitch response and release of spasm or hypertonicity. If you had PN from PFD that could potentially create some lasting relief. But just applying lidocaine, which wears off in a day... doesn't make a ton of sense to me as a treatment. They say it can "desensitize' nerves but if lidocaine were so successful in that, nerve pain would not still be a major medical issue

@@mysecretlifeofpain True, I’ve been wondering why this is so prevalent these days. Do you think it’s because of so many exercise programs that are too strenuous? As a senior, I don’t recall anyone experiencing this. I don’t have it but I’m watching a close relative suffering terribly from it. The doctors really don’t know what to do except these nerve blocks. I couldn’t see the sense in them unless leading to good treatment. I would worry that poking around might make it worse, and it’s bad enough already.

absolutely, that's the main way I use them. When I run out of what I make myself, I have used commercial brands for micro dosing

@@daniellepisarek4411 if gabapentin helps you, you’re in a different scenario than me. If GP helped me, I’d have stayed on it. It just didn’t help me at all, ever, in any way, even after months at 1800mgs a day That’s great about a ketamine trial, I hope it is beneficial to you!

@@daniellepisarek4411 thank you for your comments and feedback. Wishing you healing

@@daniellepisarek4411 i usually find ingredients by searching the name of the product plus “inactive ingredients.” It’s usually not easy to find on the actual brand’s site, but other sites will list all the prescribing info and package inserts

@@daniellepisarek4411 Its not weird. I’m not saying everyone is allergic to all of these ingredients. I’m saying that they contain documented allergens, so a substantial amount of people react to them, just not the majority. Think of it like peanuts or gluten. Most people can tolerate them just fine. But you shouldn’t give them to a person suffering with an unknown allergy-like condition before you know whether or not they’re allergic.

Hibner?

@@LoveABun exactly. We need more research and diagnostic tests and for doctors to take this area seriously

@@LoveABun the silky peach cream did help with atrophy but many people will need more than OTC estriol. I also use estradiol and testosterone. I use it as indicated, two pumps a day. I take the week of my period off all hormones. When I started HRT at first I noticed improvements mainly in my urinary pain and symptoms after about a month. SPC does contain some glycerin and so it sometimes feels a bit burny especially if I haven’t used it for a few days but it goes away after a few minutes. The burning from chemical irritants in creams lasts for 30 mins to hours in my experience

Thank you! I’m glad it helps, just posting a new one today about the most common HRT base cream and why it’s crazy to label it “hypoallergenic” cuz it would be banned in others countries!!

Thank you ❤this is what keeps me going

Thank you for sharing your experience. I haven’t had a lot of help from it for pain even at higher doses (still likely 1st or 2nd plateau) but it has helped for energy/mood. Did you use regularly or intermittently? I have been concerned about cognitive effects too but I was sent some links to studies showing DXM can be neuroprotective, and I’ve seen it’s also being used in a combo daily rx antidepressant.

So I guess I should keep looking in to negative cognitive effects. It seems like almost everything has this potential :(

I’m so glad you had already figured out what you needed to do to have some caring supportive folks in your life! I’m not doing too much different since my procedures this winter unfortunately, I had really thought/hoped I’d figured something out but I still have a tiny spot of hyper sensitive tissue that seems to be sending a lot of signals. I’m still trying things though! ❤thanks for sharing here

Yes! But people there don’t know about this account or about what I’m living with generally. I mean I’ve tried, I’ve actually shared articles about my diagnoses and made posts before my surgeries and procedures but people don’t seem to get it. If you find this account on TikTok or IG, you can direct message me or do that hear and I’d be happy to meet you on FB

I wasted a lot of money and time on chiropractic. And this video is about how I solved the problem so I don’t need to keep trying things for this

@@mysecretlifeofpain happy for you.