Tried Almost Everything/Feel like Running Out of Options/Long Post

[SouthernSally]

Looking for input on next steps. I’ve had pain for app 6 years but the last 3 have been worse. I have been working with a gynecological specialist who is president of the International Pain Society and she has run out of tools for me. I’ve also seen two pain management doctors and pain psychologist.

Diagnostic pudendal nerve blocks provided no relief. Vulvodynia and pelvic floor are involved but the worst pain is in lower buttocks. I can’t sit for long and driving is almost intolerable. Mornings are fine but symptoms build as the day moves on and I’ve sat some. The pain feels like someone is taking a fist to my lower buttocks and squeezing, pinching, and then poking with with sharp nails.

I’ve tried pelvic PT three times. Pelvic MRI was fine, Botox injection, PFCN block, ischial tuberosity ultrasound and block, bilateral transformational steroid/nerve root block. Hip injections. pelvic stretches (no kegles) pain meds, hormonal creams (I am post menopause) various cushions, acupuncture, TENS unit, a 4 week self-directed mind body program using Dr Howard Schubiner’s workbook, meditation, and I’m sure I’m leaving out some.

I’m working with a gastro to alleviate bad constipation and will see a neurologist and urologist in January. It takes months to get most appointments.

I walk on a track 2 to 3 miles daily, use dumbbells, and do light, leg/butt strengthening exercises, none of which hurt. I am thin and have no other health issues.

I’m thinking at this point my pain is not nerve related. I’m seeking a regular PT who accepts my insurance to possibly work on the piriformis and psoas muscle, maybe with deep tissue massage.

I’m decently coping but curtailing social activities and travel gets me very sad. I sit some nights with feet bent using ice packs. Each step in a new direction feels futile and its difficult to be hopeful.

Any thoughts? Thanks.

[Desperateforrelief]

My first thought from your description was piriformis spasms. They can be quite painful. For me it was from hypertonic muscles (too tight). The PT can help you try to relax them. It depends on what caused this in the first place. I'm sorry for your suffering. These can be hard to treat.

[SouthernSally in reply to Desperateforrelief]

Thank you. I can't figure out precisely what caused it but I think the constipation and straining has contributed. Also I lost a little bit of weight and I'm kinda small to begin with so working on the glutes is something I'm trying. Since pelvic PT hasn't worked I have nothing to lose by trying regular PT.

[Mshrink]

I’m sorry for everything you’ve been going through and I’m having a similar experience. I found a Physical Therapist who does dry needling and it has really helped me. Turns out a lot of my pain is related to muscle spasms and dry needling can address the trigger points in your muscles. Not pleasant but no worse than the pain I feel every day. Try to find a PT that is certified in dry needling! Kind of like acupuncture.

[SouthernSally in reply to Mshrink]

Thanks for your response. Dry needling is one of the few things I haven't tried and it's definitely worth a shot. I'm happy it's helping you. Another thing I might try is using a foam roller but I need to be careful in picking one that's not too firm. I'm sorry you have daily pain as well.

[AuntieH]

Hi SouthernSally. I have been dealing with similar symptoms as you and have been through the gamet of doctors, physical therapists and pain medications. I cannot tolerate pain medications because they make me constipated and I don't want to have worse proplems with that. So I bought some Yaktrax hand warmers and made an insulated envelope out of an old placemat which I slide two handwarmers into and that enables me to sit longer (my pain is by my left inner sitbone) and that enables me to be able to sit long enough to be able to go out to dinner like a normal person. Good luck, I know this is an extremely difficult condition to live with.

[SouthernSally in reply to AuntieH]

Thank you for empathizing. I like your improvement for dining out. I wonder if my butt could take the heat since a heating pad is too intense for me. But it’s definitely something to look at. I have a follow up tomorrow with the pain doctor regarding my last injection that did nothing. I’m willing to take another jab or two.

[AuntieH]

I sit on heating pads too during the day and have to keep turning them on and off because they get too hot. These handwarmers inside this insulated sleeve don't get that hot. Plus, a glass of wine or two during dinner also helps 😉 without causing constipation.

[SouthernSally in reply to AuntieH]

Thank you for letting me know that! Right now I feel like I need to clone myself. I have two friends out of state, an older couple. Right now he is in the hospital and will probably be remaining there or in another facility on life support. She is disabled and spends thousands of dollars a month on home care aides. I'm their POAs and need to think ahead about their finances in terms of Medicare/Medicaid, and how she will be able to continue paying for aides. I think I may soon need to take a very long drive to visit, and set my pain aside however possible. Sorry for going off course here. I'm trying to stay strong for both of them.

[AuntieH]

Wow, that's a big undertaking, but very admirable. When my husband and I travel now we break the trip up into two hour segments and stay in a hotel for a night and go another couple hours the next day. I also use a heated seat even in the summer.

[SouthernSally]

Do you have to rewarm or recharge the hand warmers? We usually do one overnight. I take an oxycodone and muscle relaxer which help very little for about an hour.

[AuntieH]

No, they are not rechargeable, but last about 8 hours. They only cost about $1.50 for a package of two. We also get out of the car and walk around a bit every hour or so to get gas, use the bathroom or do a bit of shopping. That really seems to help so I'm not continually sitting on the nerve. When we go to dinner it's always at a bar & grill with high-top tables so I can stand when needed without causing attention to myself. I also bring a sweater or soft coat to sit on without feeling conspicuous carrying a pillow.

[SouthernSally in reply to AuntieH]

Thank you. All of that is very helpful!

[AuntieH]

You're welcome! Good luck to you!!

[Agnessa]

I’m having a sitting pain for 1.5 years. Was diagnosed with the pelvic floor dysfunction due to muscle spasm. Reading your post I see a lot of similarities with my symptoms. 

What helped me the most is a relaxation technique with the trigger points release method explained in the book written by Dr Wise and Dr Anderson “A headache in the pelvis”.  I’m highly recommending his method. You can check the website “pelvicpainhelp.com/. There are tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation technique that you have to do it daily. It will take time to get relief but you just need to keep doing it every day. At beginning I wasn’t sure it will help me but little by little I am seeing an improvement. I can sit for a few hours now. The sitting pain is still there but less intense. I’m not taking any medications. Hope you will feel better soon. Good luck!

[SouthernSally]

Thank you for your reply. I’ve heard of the Wise/Anderson book and think I can benefit from the relaxation technique. I’ve been to several pelvic PTs for the trigger point work but it hasn’t been effective for me. I’m looking for a regular PT now to work on piriformis and psoas and see if that helps. It’s wonderful you are seeing improvements.

[Pudendal1]

What l have concluded is that all these shots are bandaids. Youhave to dyi rewire your brain. I have not dobe very well yet but l will keep trying . Good luck and l wish you wellness in your life. I am really down. l have anxiety as well as orher stuff. I am really fustrated. With our medical system.

[SouthernSally in reply to Pudendal1]

Thanks for responding and I hope your down period doesn't last for long. I have anxiety too. Have you ever read books by Claire Weeks or listened to her lectures on YouTube? She's one of the pioneers of anxiety. She sounds like she's in a Shakespeare play but you have to get past some phrases and words she used. She died in 1990.

I'm frustrated with the medical system too. My doctor's have treated me well but it seems they learn very little about pain in their university programs, and pelvic pain is not on their radar.

I've worked a bit on the brain retraining with Dr Schubiner's workbook, Dan Buglio on YouTube, and various mind body podcasts.

[kat3939]

Have you been diagnosed with levator ani syndrome? It sounds like that's what you have and it takes a very specifically trained pelvic PT to help with this. Also, the Wise Anderson program claims it can help with it but as someone pointed out it's a DYI program that requires a tremendous amount of dedication and focus to rewire the brain. The brain has a huge part in the way we experience pain. Hard to wrap your head around because the pain is excruciating and real. They're not discounting that but the CNS and the brain dictate the way we experience pain. Learning to meditate and work on our own trigger points is required.

[SouthernSally in reply to kat3939]

Thanks for your response. I haven't been diagnosed with levator ani. I'm seeing another PT now and we've been concentrating on the piriformis which is extremely tight. And an MRI a few weeks ago showed tendonitis in my glutes, too. But I'll ask the PT about levator ani. She does both pelvic and ortho PT. However I don't have some of the symptoms of levator ani, like a dull ache, or a feeling like sitting on a ball, or pressure in the rectum.

Some people swear by the Wise Anderson program but it's not for me. I don't have the attention span to do their work and the home program is ridiculously expensive with not even a trial period.

I know the CNS and brain play a huge role in this, especially for someone like me who's been dealing with this for years.

I have a consult next week with a neurosurgeon to talk about a spinal cord stimulator, which I don't want but feel I have to learn more about it.

[Ouchandmoreouch]

You aren't alone. I too have had " this" (but what is IT?) problem for 6 years and tried similar treatments. Nothing yet has worked. Sitting is the huge problem and definitely curtails social activities. I will keep searching, next stop is a peripheral nerve surgeon. Just dunno.

[SouthernSally in reply to Ouchandmoreouch]

About six years here too. I feel for you. My biggest challenge coming up is visiting family. I'll need to pass on joining them in some activities. At night the only way I can relax with a little less pain takes up half the sofa. Hard to do when you're visiting. I also need to do a trip to NY by car in the future, but it has to be done. I need to help a friend. I'll take opioids for that trip. I use them very sparingly and they only help a little.

I'm really starting to feel my problem involves muscles and ligaments rather than nerves. I hope to try a piriformis injection. Along with physical therapy I could handle injections every 3 months if I get some relief.

Good luck with the surgeon. Just keep in mind surgeons like to do surgery. That's what they train for. See if he can be objective during your consult. And ask specific questions like "how many patients of yours got better with this surgery, how many have you done" etc.

[Knitting20projects in reply to Ouchandmoreouch]

Hi, I had surgery (branch of pudendal nerve—not the Nantes type procedure) with Dr Dellon in the Baltimore area in 2012. It definitely was not a miracle cure but I think it contributed to my improvement. I am happy to discuss more if you would like. I initially had to pay out of pocket but then got reimbursed by UHC after I argued to them I had tried everything else short of a spinal cord stimulator. I posted a longer explanation of my situation below.

[SouthernSally in reply to Ouchandmoreouch]

Have you seen a peripheral nerve surgeon yet?

[Ouchandmoreouch in reply to SouthernSally]

Yes, I met with a perpheral nerve surgeon at Mass General in Boston. The physiatrist who recommended me had identified the posterior femoral cutaneous nerve (PFCN) through numbing injections as the problem. I was more than surprised when the surgeon told me their diagnosis was piriformis syndrome. Their approach was to have CT guided botox injection of piriformis. If there was any relief, they would be proceed with surgery to release it, including surgical review of the PFCN at the same time . At my follow up meeting, their position was changed...surgery could only help as much as the botox and I am give it more time to work. It has been 2 months. I am disappointed and feel, well, I think we all know the feeling.

[SouthernSally in reply to Ouchandmoreouch]

Oh yeah we know the feeling. I saw a urogynecologist yesterday after waiting 6 months for the appt. She found nothing and recommended pelvic PT which I already tried several times. I may have found another PT close to home that does dry needling of the glutes which I want to try. It's so hard hearing a doctor say she can't offer you more. Keep the faith. I hope the Botox helps.

[Knitting20projects]

I don’t know if you’re still on this site. I’m so sorry for your ordeal. I had a very bad situation too. I’m assuming you’ve already tried duloxetine and Venlafaxine ( neuropathic pain), gabapentin, pregabalin, & amitriptyline or nortiptyline for neuropathic pain. At this point I am wondering if you have been referred for a spinal cord stimulation trial? Or dorsal root ganglion stimulation trial (I think that is still considered experimental so not sure if it’s a recommendation). Or was that not thought to be an option that might help you? I would probably decrease the search for a cause at this point. You probably have central sensitization and it seems less and less likely that, after this many years, someone will find something to fix. I’m very sorry to say that. It was my experience too. I ended up with opioid hyperalgesia after being given high doses to control CRPS (pudendal nerve injury from delivery). Pain Medicine MD tapered me slowly off opioids and my pain was actually better. Not cured but improved a lot. If you’re on any opioids I would get tapered off if possible because of my experience. Sending you support.

[SouthernSally in reply to Knitting20projects]

Thank you for your response. Yes I'm still here! I've taken those meds and more. I've also been approved for a spinal cord stimulator but I am reluctant to get one. At this point I don't think my issue is nerve related. I do have anxiety which I know contributes to the pain. I could have central sensitization since this has gone on for so long but I think that is also anxiety driven. I also think there are physical causes for some of my pain such as high hamstring tendonitis which affects the sit bones. I've also lost weight and cushioning in my buttocks, which doesn't help. I'm seeing a chiropractor who is looking at the spinal connection. I'm also seeing a urogynecologist in two weeks to rule out any other issues like bladder.

I'm thankful I can walk and exercise with no pain. I have been prescribed opioids but I've only taken them for long car trips or flights so I don't have anything to wean off of. I'm happy for you that the tapering has improved your pain! I'm done with nerve blocks, pain doctors, and pelvic PT sessions, although I've been following a pelvic relaxation routine of Dr Bri's on YouTube which also helps with tight hips.

[Knitting20projects in reply to SouthernSally]

Oh, I completely get it. I was absolutely against getting SCS and honestly I somehow made it the last 10 years without one. I even had another child (c-section!) . I stupidly weaned my topiramate down a year ago to minimal dosing and pain recurred. Luckily it was fairly mild, but the psychological effect on me & my husband was terrible. So I went back up and pain luckily was controlled. I see Neurology for severe headaches and she said there’s not much else I can try (for nerve pain—-mine is classic nerve). I was very sedated on gabapentin & unable to work. So I don’t want to risk that. She said pregabalin usually causes similar sedation if you feel foggy on gabapentin. I was on high doses (2700/day). I really hope you find something that allows you a decent quality of life. I don’t know if he is retired yet, but Dr Echenberg (Pennsylvania) saw me for a “can I carry another child” consult (he is a close colleague of my pelvic pain MD & was visiting my state). He is a lovely person who was incredibly compassionate & kind. I don’t know if he would have anything else to offer you, but he would at least be a kind & understanding, validating MD. Most people have no idea what severe chronic pain does to people. I will be sending healing thoughts your way 💕💕💕

[SouthernSally in reply to Knitting20projects]

I took a long look at Dr Echenberg's site and he still practices. How fortunate for you that you were able to see him in your state! I may try to get a consult or visit with him. It seems like he can synthesize different pieces of information to come to a real conclusion. Thanks for mentioning him.