I have not been able to sit without horrid pain since August. I did too much — and I have not recovered. On top of that, the nerve blocks I have been getting to try to help this pain for years, like pudendal nerve block, trigger point injections into my pelvic floor, si joint injections, and caudal injections — I have been getting them since August as well; nothing has worked to improve the pain at all
My pain clinic won’t touch me anymore until someone figures out the root cause of the pain. An MRI is being ordered (finally) I am in physical therapy. The only relief I get is when I can float in my epsom salt bath. Even then, it’s not full relief (you know what I mean). I have some medications — again — takes the edge off, but the pain persists.
Sitting is something we all need to do, and it is not easy for me at all. I’ve had to limit my daily tasks to only necessities. I’ve canceled too much since August. I’m a single mom. It’s been a nightmare.
Has anyone experienced anything like this? Has anyone bounced back from this — and if so — how?!
Help!
Kelli
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kellerfly
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Dear Kellyfly -- I have not experienced the awful situation in which you find yourself. But my heart goes out to you. So sending empathy and warmest possible wishes. I hope you find some helpful replies and that the MRI throws up something useful. I do find the HeadSpace pain meditations helpful, but that is about living with pain, not fixing it. Good luck, dear soul. x
I'm sorry to hesrvthis hon. I've got the same and the only relief is cannabis. Takes it from a 10 to a 3 just hot to remember to get off my feet. Had multiple mris nothing shows or on ultrasounds. Been to vascular. Neuro and chiropractor. I'm healthy except I'm crippled ha! Norma
I have had this condition for at least 4 years. Had same shots and treatment as you…very little helps. I am having a X Ray Hip Arthro Gram in a few weeks. Had all kinds of tests. Hopefully this one will show something. I have tried every cushion on the market. Nothing works! I have had shots in my vagina..Ugh…hurts like heck and at first some relief. Hopefully we can find something that works.
I know what you mean, it's hard when every test shows nothing only osteoarthritis for me. PtSD is rucking up the pain so mindfulness meditation and cannabis and I'm going going to do EFT (Emotional freedom technique). Swimming in the sea takes my level from a 9 to 3 so that definitely shows psychosomatic. Norma
I've had the same problem for 6 Yrs. It started with not being able to sit down, but over the years it has got to the point where I'm in agony for at least 3hrs a night, occasionally all night. I've had MRI scans and various tests. No pain killers work. I'm waiting for a call from the Pain Clinic. Hope you find the right treatment
Five+ years of sitting pain and multiple pelvic treatments, specialists, injections, and meds. Seeing a new minimally invasive gynecological surgeon in July and I'll ask about a diagnostic lap and the few injections I have not had already. My spine is also screwed up and I'm seeing a few spinal surgeons for options. Most likely they will recommend PT and maybe injections. Many of the pelvic exercises are also back exercises which I've done already. But other docs have said the compression from my spine may be causing my pelvic pain.No cannabis in my state. And no bathtub in my house! Xanax helps the anxiety. I take pain meds when I have to travel but they don't do much. I've explored the mind body connection but have had no success with that. Still, I know the central nervous system plays a huge role in amplifying pain.
I know I’m very lucky with my tub, and living in Michigan for my meds. Although with the temperature fluctuations in the spring and fall — I get hit hard with wicked full body flare ups in this climate. I know I will need to move somewhere more steady weather wise soon.
No cannabis in the uk either but you can atoll get it. They've legalised it for epileptic so thats a start. Ridiculous that some thing so natural and good for you should be kept from us.
Also I went to a reflexologist 2 days ago and the centre of the throbbing shifted from the pubic bone to the sides of the groin. Mostly on the left so I'm going back to her. Any change is a good change right.
I too, am unable to sit without being in major discomfort, it's a common symptom of pelvic pain. I'd put money on the MRI coming back without any issues, mine did and I'm still left without any answers and my symptoms getting worse. One thing that does help me, is a leg workout followed by an ice cold bath. I don't know your situation, but it's usually a quick getaway from the pain for me, my bum and legs relaxed after a leg workout followed by a cold bath, until the next day..
I sympathise with you though, people take sitting pain free for granted, you don't realise how much of your life you spend sat down until you... can't anymore. Keep trying things, that's all you can do, I'd stay away from things such as injections, I can only imagine they'll cause further problems down the line.
I've tried various workout plans, chiro, PT, pudendal nerve block, weight lifting. none of which have helped, what I will be looking into at some point when I can get myself to do it, is relaxation methods and meditation. When you have pain for a certain amount of time, it gets stuck in your brain & anger/frustration only aplifies things, it's a vicious circle. It might not do anything, but maybe it's something to try at some point. Google TMS syndrome.
I'm only 24 and have had pelvic pain since 17, the specialists are baffled when I see them, I don't think they're used to seeing young patients with pelvic pain and pain in their legs. On the outside I'm completely strong and healthy, on the inside I'm in crippling pain and spend half my life laying on my side in bed on tiktok to try and find some comfort... I'll keep trying things though
I've read many of the books and did Dr Howard Schubiner's 30 day workbook but didn't improve. I've had no trauma but I have anxiety which is why I think Xanax works a little. I may be in that other group of highly sensitive people.It's difficult, not impossible, to interrupt your brain's pain signals. If you haven't already check out Dan Buglio/Pain Free You on YT.
You are spot on there about the pain cycle. It has to be broken. I've started meditating and its calming if nothing else yet. I'll keep going. The mind is a powerful thing!
Hi Kellyfly, I have had sitting pain (pudendal nerve) for the last 3 years along with pain in the right testicle probably from varicocele. I believe most of my issues were related to my mountain biking activings when I was in my 30s. I have had nerve block and meds but nothing really seems to help. I have been sitting on a cushion with the center missing and that works okay but it's crazy that I haven't been able to find a long term solution to the problem or what the problem actually is. MRI's and scans didn't really find any issues. I'm doing lots of yoga and strectching as my hips and lower back are not lined up well. I'm hoping this will address the root cause of my issues as well. I tried doing deep breathing excercises but I'm not very consistance probably becuase I didn't see any changes after a few weeks. I will start them again and see what happens. don't lose faith and keep trying new things.
i can tell you your symptoms were caused by biking that,s how my problems started and being not the wiser kept cycling until i couldn't took me 8yrs to get diagnosed with PNE
Have you tried a sports med doctor? A pain doc referred me to one to check for ischial bursitis (bursitis in your sit bones.) He used a handheld ultrasound device to check for inflammation but didn't find any. Pain from ischial bursitis, PN, and piriformis muscle can all feel similar. High hamstring tendonitis can also affect the area. I have some of the latter but the sports doc thought it was too mild to be causing my pain. His specialty is PRP injections but I didn't feel the ROI would be worth it for a mild case of tendonitis. The injection is supposedly very painful (and I have had many so I generally don't fear them) and requires physical therapy afterwards. Also PRP I injections are not covered by insurance. I think they cost a few hundred dollars. Interestingly prior to going into sports med, the doctor owned a bicycle shop and was known for fitting folks with the right seat.If you check out pudendal hope look for information but I suggest you not linger too long because a large portion of the users have lost hope.
Hi SouthernSally, thanks for the idea. what kind of sports med doctor did you go to? Was it more like an orthapedic doctor who specializes in sport injuries or a doctor of physical therapy? I started looking for sports doctors now and will hopefully find one that has delt with people who had biking related issue. Till now I have only seen urologist.
He’s an MD with areas of expertise in orthopedics, orthopedic surgery, and sports med. The pain doc who referred me had already done injections to my ischial tuberosities that didn’t help. She suggested the sports doc because he specializes in PRP injections and is adept with using ultrasound to look for inflammation.
You might search here or on FB or Reddit for groups that bicyclists belong to. PN has been known to affect the saddle area. Just understand the difference between PN (pain) and PNE (entrapment). PN is often not related to entrapment and could be caused by other nerves, muscles, or ligaments putting pressure on the area.
Hi, i had pudendal nerve operation about 16yrs ago and it was a success ,but the last 2yrs i have had pain coming back and the pain threshold i am trying to cope with but struggling also had nerve blocks to no avail , went for MRI and it showed no entrapment so i dont know which way to turn ,i,m on gabapentin ,amitriptyline and pain killers
I couldn’t sit at all, tried every treatment known to man, nothing helped. I had my tailbone removed in 2008. I wish I had it removed sooner, because by the time it was removed, other parts of my body were in pain. I think the tailbone being loose caused nerve damage, sitting crooked when I did have to sit, standing all the time. Anyway, having it removed helped but not enough. Got a spinal cord stimulator in 2016. That helped a lot, although it does become less effective over time, still glad that i have it though, without it would be much worse.
I have not heard of someone having their tailbone fully removed and helping with this issue. This is interesting to me. I’m surprised no one else has suggested such things.
I have had ongoing sit pain for 12 years. The only treatment that has worked for me is internal pelvic floor therapy and gabapentin. If it wasn’t for the myofascial release I would have never been able to sit again. I will never be 100 percent but I can sit at work and on road trips again. I’m a new person.
My husband has suffered from pudendal neuralgia for the last 6 years. His pudendal nerve was compromised during a day surgery supposedly to help his incontinence. He has done all the nerve blocks, fascial physiotherapy and 2 years ago had an implant of a StimWave which is supposed to mask the pain through electrical impulses. The StimWave helps a little bit but he is still on a combination of drugs (hydromorphone, methadone, lyrica, cymbalta and a compounded salve which includes ketamine). And he still can't sit without lots of pain. The fascial release therapy was helping but had to be abandonned when Covid came along. If you do have pudendal neuralgia, it is nerve damage and probably can't be seen on an MRI. We are constantly on the lookout for any new treatments. He still has lots of mesh in there from 2 incontinence surgeries so nerve decompression surgery is really not an option for him. It's an uphill climb but never give up hope, different things work for different people. Keep researching.
MRI showed that my tailbone was dislocated. Doctor also thought I may have pudendal nerve entrapment, Pudendal nerve blocks did not help the sitting pain, so I went forward with having the tailbone removed.
Totally been there. 10 years -Nothing "medical" worked. I suggest the Mayo Clinic Chronic Pain Rehab program. It is wholistic and works for all chronic pain. It takes time and work but is life-changing. My insurance covered most of it. Probably because it stops the patient needing lots of other things. There are three locations but I can recommend Rochester Minnesota.
I have had pain for approximately 7 years. Have had every test, scans, shots , p.t. and more. My husband and I were just talking about the Mayo Clinic…Thanks for your input.
please read the book “Healing Pelvic Pain” by Amy Stein this has helped me I also find yoga helps the DVD by Dustine Miller titled “Your Pace Yoga” ..I hope this helps you..I have found the more the medical field tried the worse I got ..I didn’t start to feel better till I stoped thier treatments …I will pray for you
Yes - I know exactly the feeling.I have had it for 7 years and tried all the treatments you mention.
I damaged my "sitting bones" and surrounding lady parts on a zip wire.
The only relief I get is by sitting on an ice pack. It is instant heavenly relief.
But be careful of freezer burn so don't overdo it and don't place directly o your skin.The other thing I use is biofreeze spray. It makes your eyes water at first but then everything freezes and it is amazing.
Recently I am trying "Postpartum padsicles" made by Lansinoh which are also kept in the freezer.
My pain clinic has been supportive but ultimately unhelpful.
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