Hi everyone I hope someone out there can help me because it's now been 10 Years that I have suffered with this unbearable pain and nothing seems to help. The doctors have sent me for more operations and procedures that I can even explain. Everything from two different pudendal nerve blocks to radio ablation of all the nerves around my tail bone to huge doses of different pain medication's, Lyrica, you all know all the stuff. It ended in a freaking coccygectomy in 2013. The 2013 coccygectomy almost killed me because an infection reached out of control and almost went into my spinal cord which the doctors say would've been fatal. So what am I left with. The thought of knowing that every single day when I go to the bathroom then 10 minutes later those muscles will spasm and will Charlie horse inside my anus so badly that nothing will stop it even though they give me the usual from the pain management clinic the Lyrica the muscle relaxer etc. does anyone know of any medication at all that really helps with this Charlie horse that occurs inside of your anal sphincter and around it? I've been told that all kinds of different things could help from meditation to stretching to all kinds of things and I've been through about six rounds of physical therapy even internal physical therapy with no improvement. So I can count on this pain for at least an hour after I go to the bathroom each day and most likely it will occur again at night before I have to go to sleep which makes them difficult to sleep as well without taking Ambien or other things.
This problem has destroyed my life. My wife was so sick of seeing me in pain that she actually divorced me and I was sent out into the world not even being able to walk and unable to do my job which ironically is a pianist! Imagine a pianist who can't sit down!? And then of course the pandemic Has to come along so I can be even more depressed about the situation and realize that I may never work again after working at some of the best places in the country and out of the country. I became very very depressed and my anxiety levels through the roof which of course feeds right into this problem and makes it worse. Most of the doctors don't realize that this problem has both a physical and psychological element. My nervous system is so up regulated that it just makes the pain even worse. I've tried to purchase things off the Internet that would make your cortisol levels drop and all kinds of things anything at all that might help and nothing has. So my question out there to all of you who can relate to this and I know that you're out there in droves and you've been seen by dozens of doctors and have no relief because they'll say to you I have no clue about this stuff we didn't learn anything about the pelvic floor tail bone or anything like that in medical school we stop at the bottom of the spine is what I was told hundreds of times I think. So my question is does anyone know of anything whether it be some type of medication or stretch or any kind of thing at all that could help manage this. It sucks so bad.
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pianoguy
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My wife has the same issue. Going on 9 years now. I’ve taken her to every doctor in Florida that could possibly know something about it.
She was a non stop woman busy and happy every minute of the day.
Pain meds etc, same as all the above.
We came across a Dr. who specializes in the insertion of a stimulator into the spine, it is controlled by a cell phone type unit and can be regulated up or down depending on the pain level.
It is from Abbott, we are going to have the procedure done soon.
The trial period was a success, it took away about 60% of the pain.
I don't know where you live in Florida but there is a woman named Tracy Cher... She is in Orlando Florida please look her up there is no one better for this she teaches doctors how to work on this. Find her at all cost. The only thing that works for me is alprazolam and any kind of muscle relaxer. I hope she gets better because this is a nightmare. God bless
glad she had a good trial. Just had my trial one taken out a couple weeks ago. It did not help me. I wanted it to so badly but.. going for Botox at end of month. Helps the spasms at least.
I wish you and your wife good luck! Do you know if she is getting the traditional Abbott spinal cord stimulator or the dorsal root ganglion (DRG) stimulator? And where along the spine it's being placed? I'm curious because I met with a neurosurgeon who uses the Abbott stimulators. I've been approved for one but I'm still trying other methods.
Have you tried taking 0.5mg of alprazolam twice a day? It's an anti anxiety prescription medication which helps calm your central nervous system. Good luck!!!
I feel your desperation & know exactly how you feel when it comes to this madness. I won’t get into everything but I’m in a similar situation after having a prostatectomy 10 years ago. Look into the eCoin by Valencia technologies. It’s a small device placed in the ankle at the area of the pudendal nerve to help with overactive bladder, which may be what you have.
The device just received FDA approval last year. My urologist has already received the training & she’s actually performed a few but only on medicaid patients. My insurance has already approved it but I’m still waiting on Valencia for reimbursement purposes to the hospital.
I’m hoping to have it done soon though. Like you, I’ve seen countless doctors & had numerous procedures & tests all to no avail. Extremely frustrating to say the least.
I’m a post-menopausal female who has suffered from genitourinary symptoms of menopause for 2.5 yrs. Symptoms are vaginal burning, as well as urinary frequency, urgency and burning. I’m being treated with vaginal estrogen which has helped some.
I also have been diagnosed with hypertonic (tight) pelvic floor muscles and pelvic spasms. The spasms get so bad that they can affect my ability to start urine flow.
Three things have helped me:
1) For spasm relaxation and pain relief: Prescription compounded suppositories containing Valium and baclofen. Valium alone won’t sufficiently relax spasming pelvic muscles; your suppository needs to contain a muscle relaxant as well (baclofen or methocarbamol).
2) Oxybutynin patches, which were formerly available only by prescription (for overactive bladder) and eventually approved by the FDA for over the counter sale. The patches are marketed under the brand name Oxytrol for Women. I get them on Amazon. One patch is worn for 4 days. It takes a while for it to build up in your system so one needs to stay the course and be patient. I began noticing a rather profound reduction in spasm frequency on my 6th patch. (There are 8 patches per box.) Although I am highly sensitive to the side effects of drugs, I’ve had no issues with this one. Highly recommended.
3) Pelvic floor physical therapy by a highly knowledgeable and experienced pelvic floor therapist—preferably one with Herman and Wallace certification. Many clinical studies have shown pelvic floor physical therapy to be extremely effective for symptoms such as yours (and mine). I’ve only had one session and she sent me home with a few breathing exercises and stretches. Between these and the Oxytrol, I feel much better.
hi!!! I’ve been through EVERYTHING u have been through and more. I have tried all the stimulators out there and had one DRG stimulator implanted but it didn’t work!!!! I’ve had numerous injections and physical therapists and acupuncture and hypnosis and EVERYTHING else out there but nothing has worked!!! I currently have an implanted pain pump but trying to find the right settings of meds. I’m using morphine and baclofen which seemed to help in the trial but the concentration is so much more by one injection than a trickle through a catheter so on my med refill we r going to up the baclofen. I have tried ketamine suppositories and infusion as well. I’m thinking of doing the wise Anderson protocol that helps with the pelvic floor but not sure. Need to give the pain pump more time. I’ve been pushing through my pain for so long I’m just wearing out!!!! It’s been 9 tough years!!!!! This is the worst thing I’ve ever been through even after three neck surgeries!!! I’ve had knee pain and severe back pain but nothing compares to this!!!! This is insidious!!!!! I keep asking god to help but so far nothing has helped!!!! What do u do to try and help? I will try anything to get out of this pain so I’m reaching out to fellow pain sufferers. I hope to hear from u!!! Thank u for being so open!!!!
he only way that can help us is to look for a physical therapist who works with endocavitary tecar therapy.
In the region where you lives there must also be. Don't lose hope and look. I was also at the end of the line. Look for this solution and you will see that your life will take a turn
What is it TECAR ?
fisiowarm.com/en/tecarthera...
tecartherapy.com/
btlnet.com/tr_therapy
winback.com/
fisiowarm.com/en/2021/03/05...
Now you know what is TECAR. Search «Dr Google» in your country by a PT who works with endocavitary tecar therapy or call one of the tecar brands and ask for a physical therapist or clinic that treats the pelvic floor. Anything, im here.
Hi so sharing your pain. It's just unbelievably bad people would never know. I have not found the answer and I've been everywhere to everybody. Even hide my tail bone removed and still no better. I will pray for you and everyone else on this thread! Right now I'm just using muscle relaxers and some Hydro more phone but it really doesn't do much. I'm going to my doctor soon and I'm going to just tell them I can't be on the same exact medicine I've been on for 10 years! My body is so used to that medicine and that dosage that he just laughs at that now. Yet when you try to get more they'll call you a drug addict! People can buy all the booze they want all the marijuana they want doesn't matter we can't get even anything to help us or else we're called drug seekers? I can't tell you how many times I went to a doctor and he thought I was a drug seeker and I wanted to just knock him senseless because of accusing me something like that after what I've been through! Screw them! I also pray to God and I can't blame him. He answers in his own time. We have to remember that 1000 years is one day to God. But there has to be a solution somewhere and I hope we both find it. Hang in there we all are! All the best. Al
Hi!!!! It was SO nice to hear from u and I’m sorry it’s taken me so long to respond! I hear u about the meds and labels put on us when no one has any idea how much we suffer!!!! It’s unexplainable!!!!! I’ve tried EVERYTHING under the sun and I keep hoping but NOTHING has worked and my faith in god is waning but I pray every morning and every night and sometimes throughout the day!!! I’m now thinking of going to the wise Anderson clinic in Petaluma but still hoping the changes being made to my pain pump tomorrow help!!!! I don’t know what else to do!!! I’ve read about TMS but how can u NOT think about pain when u stand up and r immediately hit with a feeling like everything will fall out your ass!!!! The pressure is horrific!!! U had your tailbone removed and I had a colostomy hoping our pain would go away and it DIDNT!!!!!!!!! This isn’t right!!! How did your pain start? What can u do during the day? For some reason my pain has changed for the worse and I’m losing it!!! I’m SO sad and depressed even on antidepressants!!!! I only hope that all of us in pain can find something that can help us!!! I hope u someday find health and happiness and I wish that for everyone that has this horrific pain!!! Take care!!!!
I am sorry to be course but my pain is severe and it's right in the anal area even though the doctor say there's nothing wrong there so it must be coming from somewhere else. I had to pudendal nerve injections did nothing so I'm praying something can stop this pain. Thank you everyone.
I read the responses and I agree the muscle relaxers suppositories help. But B&O's have worked the best for me. They stop the pain in it's tracks. It is belladonna and opium suppositories. They are getting harder to get. I save them for the 8-10 pain range. They help with bladder, especially urethra/rectal pain. They do not help other pains at all. I do not know why this is.
I’m so sorry to hear your in such pain for so long. Have you seen a physiotherapist? Sounds like you have pelvic floor issues . Your rectum muscles are reacting to anxiety and stress. You need to learn from a therapist to down train, no straining techniques. Exercises that relaxes this muscle. Sitting as you do as pianists is not helping. Do you also have a squatting potty? Those help with BM muscle relaxation and correct breathing. Stool softeners daily to keep stools soft help. Look up Dr. Bri on YouTube. Also find the time to turn to God. He will heal you or make it tolerable. Just ask him. I’ll keep you in my prayers.
The only way that can help us is to look for a physical therapist who works with endocavitary tecar therapy.
In the region where you lives there must also be. Don't lose hope and look. I was also at the end of the line. Look for this solution and you will see that your life will take a turn
What is it TECAR ?
fisiowarm.com/en/tecarthera...
tecartherapy.com/
winback.com/
fisiowarm.com/en/2021/03/05...
Now you know what is TECAR. Search «Dr Google» in your country by a PT who works with endocavitary tecar therapy or call one of the tecar brands and ask for a physical therapist or clinic that treats the pelvic floor. Anything, im here.
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