I have been on this journey of chronic pelvic pain for 3 years now . I had 2 surgeries trying to fix my PN based on findings of imaging . The surgeries did nothing to help at all. I work in the medical field myself so I thought that there absolutely HAD to be something structurally wrong with me. The pain was so intense. But I was also confused how something could be structurally wrong but the symptoms fluctuated so much. Level 10 pain most days to occasionally a random level 2 pain. Eventually I decided to pursue the mind body connection and discovered something that helped when nothing had before. Meditation. So I found that stress increases my pain, while meditation will decrease it.
I want to add now that my symptoms began suddenly, without any injury. After a time of intense prolonged emotional distress including ending a very toxic 17 year relationship , followed by back to back losses including losing my Dad suddenly, then both my Grandparents , hurricane Florence, 2 of my dogs died (one of which was was very traumatic), and almost losing a 3rd newly adopted puppy immediately after due to a horrific accident. I thank God for my medical training because I was able to act quickly and save my puppy. I won't go into details other than to say that of all the things I witness working in a hospital everyday for 20 years nothing even has come close to impacting me the way that it did seeing what happened to each of those dogs. And after that I was left with PTSD. But being prior military I feel like I was conditioned to do what I needed to do in that moment and I never worked through the emotions. I didn't even have time to before the next situation would occur. Which leads me to where I am today...
I now watch a daily video called Pain Free You on You Tube. There are specific videos in which he talks about pelvic pain and pudendal neuralgia. This isn't going to be a quick fix, but I can say I'm about 50% better than I once was. I am starting to calm my intensely upregulated nervous system. I went from being almost to the point of disability to working full time again and being able to hike a few miles a day with my dog. Sitting is still bad but I'm being patient with this process now instead of trying to quickly "fix" this like I once did. Nothing worked for me, I tried multiple Pelvic Physical therapists, a Neuro PT, chiropractor, pudendal nerve block, botox, surgeries...nothing helped at all. But this is slowly working . I'm sharing all of this because I hope it reaches someone and helps you, my heart goes out to all of you. We are in this special little club that none of us signed up for, but I believe there is a way out. We need to be kind to ourselves and trust the process.
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My journey has been 5 years of very similar symptoms,operations and emotional trauma.Thank you so much for posting this.
It is comforting and helpful to read.
I also find meditation and restorative gentle yoga excellent. Dancing,moving ,walking also help.Anything to relax the tension and nerves.Aromatherapy baths and massages are lovely too.I take magnesium which helps and have a much healthier diet to ease constipation if I do need painkillers some days.
Can I ask did you find Gabapentin helped? I am not sure about it,although it was recommended by my surgeon.
It's a long road...but at least like you I can walk again.
I am very happy you are finding some relief…I too use meditation and yoga for my p/n pain …I tried many many different types of drugs that all gave me some type negative reaction…the stress is definitely 💯 percent a huge factor on my nerve pain…driving in traffic just sets me off horribly…try reading the book by Amie Stien “ Healing pelvic pain” I also use the dvd by Dustine Miller “ Your Pace Yoga ..reliving pelvic pain”…I also work with an herbalist and take Valerian root and hops in capsule Form up to 3 times a day …gabapentin was one of the only drugs that seemed to help but after about a week in it caused me to have blurry vision….this is when I started (after 3 years of being misdiagnosed dr. After dr…..I wish I had half the money I spent) also meditating 🧘♀️ with crystals is helpful…I have found soaking in a hot tub ( milk bath or epson salt baths) is very helpful…I wish you much health good luck it is definitely a personal journey
Thank you for this! I'm so happy for you! 50% improvement is HUGE in my opinion. I'd take it. I'm familiar with Dan and Pain Free You. He is one of the best in the mind/body space. I've watched him and many others and did Howard Schubiner's one month workbook. The messages of safety haven't worked for me when the pain is so acute. I am able to function well in many ways but it's the sitting that becomes unbearable.
I did not have the prolonged emotional stress you had. I am sorry for all you have been through. I think my situation is from my nervous system over time. A very long, incrementally gradual process over time. So gradual I hardly noticed it for the first year or two.
I want to mention one other person in the mind/body space who I think is very helpful. Dr David Hanscom. His website backincontrol.com (same title as his book which I have not read) is very good. He has talks all over YouTube and a podcast. What I find different about him is that he stresses that you cannot make yourself "unthink" something. He says you don't learn French by unlearning English. I think you might find he does not contradict Dan's work.
One other thing you and others may want to check out. EssentialSomatics.com. There's a free course and YouTube videos. It's about natural movement, not exercise or stretching and it is extremely gentle.
i am so sorry you have to deal with PN too. It is a horrible condition as you already know. I also have several pelvic floor muscles that are tight. I did pt many times over the 15 years i have had these several illnesses. I deal with PN, Levator Ani Syndrome, Anal Sphincter almost constantly spasms, IC aka Painful Bladder Syndrome and Vulvodynia. I have had everything done except surgery, and i don’t want that. Doesn’t seem to help many people. I am going to try what you are suggesting about watching Pain Free You and TMS. I know it’s real pain. I am 71 now and i can’t do much. Looked so forward to having some time to myself. I may have some questions if that’s ok. I am so glad you are feeling somewhat better.
Hi Betty !!!!! I’m so sorry to hear what u r going through and I’m right there with u!!! This is the first time someone has mentioned sphincter spasms and I too have those and severe levator ani!!!!!! Pelvic pain is the absolute worse pain I’ve ever had!!!! What have u tried for those? I’ve tried EVERYTHING under the sun even doing a diverting colostomy which made my sphincter go CRAZY!!!!! NOTHING has helped!!!! I’ve tried SO many things and nothing has helped! I now have a pain pump and that hasn’t helped because the muscle relaxer isn’t strong enough! That’s being changed June 1!’ I have tried pain free you but when I stand up I feel like everything is going to fall out my ass and vagina!!!! I don’t know what to do anymore!!! I’m looking into sola therapy and the wise Anderson clinic but those r very expensive but everything I’ve tried hadn’t worked!!!! Even hypnosis didn’t help!!!! What r u trying now!!!! I’ll try almost anything to be able to live a somewhat normal life cuz right now I sit on s heating pad all day!!!! No one knows how excruciating our pain is or understands it. I feel SO alone but know I’m not!!!! I would love to talk to u more!!!!! I hope u will write back and maybe we can figure out what to do!!! Take care!!!! Talk to u soon!!!!
thank you sincerely..your post answers many of my own questions. Your post is so clear…. Sometime perhaps could mention whether or not if you suffered any prolapse (bladder, cervix.. ) as well?
I cannot even get anyone other than my GP to help me. The on call neurologist that was on duty the night I hurt my back dragging a bull’s grain trough away from him..(there were some frisky heifers on the other side of his corral gate, and he was wrecking the feeder), I originally felt no pain at a all. By next morning my legs were numb and I was becoming numb higher up. Called an ambulance b/c I work and live alone. The theory was transverse myelitis. 5 MRI’s , spinal tap, Etc etc .. one neurologist dussgreeed said it was traumatic damage. I think he was right.
No treatment offered, I have become worse. My only ‘treatment’ was to be offered buckets of gabapentin, bacolofen…cymbalta.
Can hardly sit.. if I didn’t have a young woman-child who has cancer a province away.. I would end my suffering. I am renowned for being tough.. but this is a nightmare. Logistics make my attendance at much more Physio hard, as my daughter is a province away.. a farm is hard to sell…truly we are in a bad spot.
Yup… can’t even insert a tampon. No ob/gyn will see me til Jan.
So I really appreciate all your posts, everyone. Also.. my symptoms are progressing still.. I was always extremely fit, and so I shuffle a couple miles/x2 a week on country roads… but a pelvic floor Physio told me do the opposite of Kelgels. Relax, sink everything out.. never tighten.
Which it seems I read is recommended for prolapse!
I only use 1/3 prescribe amount of meds I found I never could go higher than 700 m/day of gaba, backlofen..? Limited relief. Cymbalta… no help so I don’t take it after trying it for a month.
I was foggy, mentally as well…if I took the prescribed amount of bacolofen. Sorry for spelling errors. That prescribed amount was at oral max..80 mg day.
The neurosurgeon says now the disc damage has largely healed But they all feel arthritis has caused ongoing damage (T12 level)..and nothing more can be done for me. A physiatrist as well as the neurologist dismisse my own questions if I have PN. I read it somewhere trying to figure things out. I seem to have the symptoms but … I am getting exactly no where.
Asked for referral to another neurologist. And was told I have seen one already, I was thoroughly examined two years ago to this day in the hospital. So… here’s your meds, honey.
Selling off my cattle.. I can’t manage things much longer with my daughter needing me weeks at a time. I am a Canadian.. so family is stretched across the prairie provinces.
I am sorry to write so much.. I have had Botox paid for by Government, as my leg as and left foot is contracting, for spasticity.
Which they don’t all believe I need.. since that 🤬neurologist does not believe I have… but the physiatrist says… ‘it helps you’ so he continues to prescribe it every 3 months.
Thanks for reading. I wish I could give back to you all for writing about your experiences. This is my only foray into social media.. computer ‘stuff’.. but I can raise one heckuva good T-bone steak.
Oh yeah.. daughter loves animals so much she’s VEGAN.
Do you feel you’ve had adequate and compassionate care in Canada?
I’m from Vancouver and I was gas lighted after I developed a severe athletic injury and pinched nerve in my groin. The doctors were abusive and I was misdiagnosed because they simply would not listen to me. They said I had cyclothymia. This was nonsense!
I was told I’d be seen in a ‘Pain Clinic’ when instead I was seen on a ‘Medicine Ward’. I never filled out Pain Clinic Intake Forms so I had no voice. My nerve blocks were done incorrectly and without imaging yet my Pain specialist committed fraud and said her second nerve block was done with imaging! She outright lied and she did so more than once.
I’m lucky to be alive. I hired a registered nurse consultant and she advocated for my surgery. Doctors kept saying they’d help me procure it and they lied. I needed decompression surgery of my right pudendal nerve in Minnesota or I was going to die. I got my surgery 4 years too late so I’m disabled now with a swollen nerve injury in my groin. It makes sitting, sleeping, lifting and walking painful.
Can you try magnesium bisglycinate fir your muscle spasms? What about fresh ginger, turmeric and orange juice?
I am warmed by hearing your journey, as I can relate to your experiences a 100%. I have found the work of Irene Lyon ground breaking for healing chronic pain. Her Smart Body Smart Mind teachings have revitalised my whole body and mind. thank you for sharing and sending I am sending you warm wishes.
Sorry to hear you have been going through this - It's hard to describe to someone who hasnt experienced the pain involved. I think you should read this book: A Headache in the Pelvis - available on amazon - I am not the author - also check out this site for information: pudendalhope.info/ - good luck!!!
Thanks for sharing. I'm the same, pain seemingly came out of nowhere, however I don't think stress brought it on, as at the time I was a young happy chap with no stress on my mind. I'm also thinking this may be a case of calming down my nervous system which seems to be on hyper alert at all times. It simply started off as pelvic pain, but now it's "pain everywhere below the waist", unexplainable pain too, which I think is the important part.
Thanks for sharing I will check out those videos, a few years ago I would have turned my head at the thought of meditation/relaxation would help this agonizing pain, but having tried a lot of exercise and getting nowhere with it, I might just experiment with it
Hi! Im SO glad to read your post ! I too have had a long journey with my pelvic pain but mine started with a rectal exam in 2015 when I felt a pop and then the headache in the pelvis started. Since then I have tried EVERYTHING out there to help even doing a diverting colostomy to help and that has only made me 100% worse. The urge to poo is ALL the time. For some reason my pain has changed and I’m about ready to lose it!!!! I’ve done the pain free videos and meditation but doesn’t seem to help me. I’ve listened to many of the videos and the people say get on with your life but when I stand up I feel like EVERYTHING is going to fall out my ass and now vagina! I have had a hysterectomy and that was ok but right after my levator ani came back with a vengeance!!!!! It did calm down but got worse so my colorectal doctor and I decided to do the colostomy and now I’m dying the pain is SO bad!!! I saw him last week and he said my levator muscle was very tight which it always is. So how did TMS work for u? Im willing to try again! I have PUSHED through my life and it HURTS so bad but I try!!! I had a pretty busy weekend gardening and visiting with my kids and grandkids but not for long and I HURT so very bad. How did u get to where u r today? I need your help to understand!!!!! Im a 68 year old woman who wants her life back ! I use to work and exercise and I haven’t been able to do either in years!!!!!!!! U have given me hope but my faith in everything is waning. I have a pain pump now but the muscle relaxer isn’t strong enough so like I said everything wants to fall out!!!! My personal email is mandykl1234@yahoo.com. I hope I hear from u!!!!! Please take care and thank u!!!!
hi!!! I wrote u another message but not sure u got it!!! I’ve looked into Dan buglio and watched his videos etc. how can u not think about your pain when it is CONSTANT and POUNDING!!!! Like u I have done EVERYTHING there is to do!!!! I am seeing dr wises’ pelvic therapist on July 7 as I’m not sure even dr wise thinks he can help me!!!! Dr wise is of the wise Anderson protocol!!! This spasm is crazy!!!! Comes from both the levator and sphincter muscles as it feels like I have to poo ALL the time!!!! I can’t take much more!!!! I’m going to look again at pain free you to see if I’m missing something!!!! I’m SO sad and confused after 10 years!!!! I keep hoping I’ll feel better but I’m not sure anymore!!!! I just had pelvic therapy again and it sent me into acHUGE spasm where I thought I was being RIPPED in half with a volcano blowing up in my butt!!!! If u have any thoughts or suggestions I would greatly appreciate it!!!! Please take care and hope to hear from u!!!! God speed!!!!❤️💕💝🙏🙏
I’ve asked before but not sure u got my message but how do u get through this without thinking about your pain when u feel like your ass is falling out your bottom? I try to push through but the pain and burning is unexplainable!!!!!!!!!
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