Does anyone know of an excellent pelvic floor PT and pain md specializing in pelvic pain (male) in the western Washington state area? We are in Snohomish county, a suburb of Seattle. Seeing an anesthesiologist at the University of WA but not too impressed.
We are considering contacting the Mayo Clinic. Has anyone found a good specialist there?
I’m currently seeing someone in the Mill Creek area. Summit Rehab and PT. They have helped me a lot. If you are uncomfortable seeing a woman therapist this may not work for you. Depends on your attitude on getting relief. It does take time and you have to do the work. Hope this helps!
Thank you!! Female is fine, he just wants to get better! Do you have a good pain management dr you’re seeing? He went to the UW but no procedures are covered by our insurance, we will be paying out of pocket for a impar block
hello I spoke to you a couple of months ago I was just wondering how your husband is doing I've had pelvic floor dysfunction with pudendal nerve irritation for about 14 months but I am definitely getting better after 8 months of pelvic floor physical therapy and muscle relaxers and I also diligently do my home stretches and my deep breathing but there's a lot of stuff that I'm finding out about it now...just wanted to get updated on him thanks
Hi, thanks for asking. He’s had 3 pudendal nerve blocks at the University of Washington. All three have only contained lidocaine. His pain is completely gone following the injections but within an hour or two (when the lidocaine wears off) his pain comes back worse than before. The dr said it’s because his nerve is irritated. He has his final nerve block next Tuesday which will contain cortisone.
He has found a pelvic floor specialist that is knowledgeable of PN but can’t get into to see her until mid-March. He cannot handle any internal massage as it aggravates the nerve for days afterward and he almost goes crazy. His pain is completely worsened by bowel movements, especially softer stools for some reason. The burning is intolerable and he also state that he feels like someone has taken a razor blade to his anus.
I’ve ordered CBD oil and will make suppositories for him.
Pain pills (oxycodone) help a little but he’s only prescribed 2 a day. Diazepam (Valium) works great (because of its muscle relaxing properties) but the drs won’t prescribe benzodiazepines. He can’t take cyclobenzaprine because he’s on amitriptyline for interstitial cystitis pain (which I completely believe is related to the PN). He has tried Cymbalta and gabapentin, both have him horrible diarrhea which just exacerbated his symptoms.
This is a complete nightmare for him..us.. as I suffer, too. We have been married 45 years and I’m sick watching him suffer and feeling helpless. He doesn’t even enjoy our beautiful grandbabies anymore due to this evil pain.
I will let you know how he reacts to the cortisone PN block. And what the UW Pain Clinic will recommend if it doesn’t work (God forbid). I’m interested in the PTNS device. I have read about the cryoblation. We will discuss all these options with the UW dr we are seeing.
Thank you for all your wonderful posts. I hope this new PT is as good as yours and can help him.
God bless you. Wish you lived close by, I’d like to join your support group!!
Yes I think the ptns may be a good idea to try.... I got a small TENS unit just from Walmart that helps too and that is a ptns kind of smaller version... I think the if that works then the implant is recommended.... So my PT said something which I've long believed and that is your nervous system gets so used to the pain that a pin pick will feel like a knife and it has muscle and nerve memory so that your nerves and muscles are telling your brain that it's supposed to hurt and so therefore it registers as pain and we have to do a brain retraining..so the main thing is to get your nervous system calm down completely the whole nervous system ...someone on here told me about the curable app so I checked it out and you can listen to at least six different lessons for free before you decide if you want to purchase it and they have 20% off if you wait a day or two after you listen to these lessons I think it's only around $60 for the whole year so I think it might be worth it what I really liked was it was free and I really felt like it explained a lot in better terms than I've ever read before so just check out curable app and then listen to the six free lessons let me know what you think... I think we're going to need a whole revolution movement to get people to know about this because I think a lot of people have it and they're just not talking about it.... Probably popping a lot of pills but I do know for sure it takes a long time to reverse the condition because it's taken a long time to get it like that ... my PT said that a lot of people are butt clenchers which is called guarding in stressfull times and then you don't even know you are doing it after a while... But of course this results in nerves getting squished in the muscles...and after a while you've got pudendal neuralgia and pelvic floor dysfunction....just remember to tell your husband just be patient it Will get better , especially with the physical therapy for the pelvic floor which is amazing but it takes months...maybe a couple of years I'm going to put him into my pranic healing group and my prayer group... Best wishes...message me anytime you want and if I come up with something new I will message you right away
Thank you so much! I agree with you, he has been under a lot of stress in the past AND an avid cyclist so those muscles and nerves are tight. I can even feel his butt clenching at night when I lay against him.
I’m interested in the curable app.
I’m so appalled at the medical community of knowing basically nothing about a disorder that so many suffer from.
My husband’s pcp is still skeptical that it is pudendal neuralgia. It makes me irritated.
Thanks for all your posts and support
BTW...my name is Mari-Ann...
Hi Mariann... nice to meet you !!I am Audrey....one more thing I just been doing recently and I just remembered I think it's having some beneficial effect I'm taking a B-Complex for the nervous system ....just a thought....I am also going to try full spectrum cbd gummies one of these weekends when I don't have to go anywhere because my friend has hempworx which is a CBD business online.... She knows everything there is about CBD products and I've known her for 25 years so if you want to get the right products for your husband I can connect you with her... okay we'll talk soon🙄🤔😏😁
So nice to meet you, too, Audrey!! I definitely would like to speak to your friend at hempworx since neither myself or my husband know anything about CBD. Also, is there a certain B complex your taking?
My husband started Palmitoylethanolamide a couple of weeks ago after reading in length that it can help PN pain. No results yet but he hasn’t given up.
I’ll let you know Tuesday’s outcome with the cortisone added to the PN block. Praying to God it works.
I just read a study on the block with the cortisone.... Just one last question has he had the MRN MRI which is the MRI that shows the tiny nerves and if the a nerve is compressed? I know that's the only way that they'll do the decompression surgery ...I'm in Phoenix and Dr Hibner does it here...
What did the study reveal about the cortisone blocks? I’m so concerned it may not release his pain. He has not had the MRN. They do them at the University of Washington but his dr wanted to try the blocks first.
I have relatives in Sun City West. If necessary we could come there if he needs a decompression surgery.
The study was interesting it did reveal that some people it helped a lot and others not... just like everything else with this Darn issue but I forgot to ask if he had had Botox ?for some people that works after two or three times and then others it doesn't but I think with Botox you have to commit to at least three to four times in the year some people say it's all they needed and it worked another say it didn't work so so I guess we just have to keep trying everything... one last question ..how long did you say he's had this for?
That’s what we’ve heard about the cortisone too. This issue is one of the most perplexing medical problems and truly a nightmare. His started 2 years ago this coming April. He was an avid bike rider all his life (did the Seattle to Portland, a 200 mile ride). Then he went on a business trip, cane home with a bad bout of burning diarrhea and it’s only gotten worse from there.
He hasn’t tried Botox yet. New PT on March 17th that is knowledgeable in PT for PN..
He is in bed right now and asked me to thank you for all of your help and support. He’s grateful that you’re on the blog and feels terrible that you’ve had to endure this too.
His name is Richard.
Absolutely!! We have to be there for each other because it's very difficult for anyone else to understand it... Can you send a private message to me through this site because I'm not sure how to use it and I want to send you some other information that is private ... thanks
Hi MariAnne and Richard... Just wanted to know how the lidocaine cortisone shot went on Tuesday... I wanted to tell you I am going next week to get battlefield acupuncture.... I never heard of it but it's a new kind of acupuncture that they do to the soldiers on the battlefield instead of giving them opioids and it kills the pain so I'm going to give that a try and I'll let you know how it goes... I'm supposing I'll have to have a few treatments for any effect but when I spoke to the acupuncturist she said it works pretty fast and if it doesn't work it's because of the pain,/ brain pattern and then it will take different kinds of acupuncture and other mothodd of ancient Chinese medicine
Hi Audrey,
Richard’s PN block went well but so far he has had absolutely no relief and is actually a little worse. The anesthesiologist said it takes at least 3 days for the cortisone to begin to take affect so he’s hopefully waiting. In the meantime his primary care dr gave him a prescription for Valium 10 mg tablets to use rectally (after I ordered them online, lol). They seem to help a little.
We have a follow up with the pain anesthesiologist on Monday morning. I’ll let you know what he says regarding how we are to proceed...ablation, cyroablation, ptns.. etc...
Anyway, today his pain is excruciating.
Let us know all about the acupuncture, he tried the traditional once but the dr was so weird and it was not a good experience. I’ve never heard of battlefield acupuncture. I’ll look it up.
I wish he could try the cyclobenzaprine...but at least you have the Valium coming!! I just ask you what a pain anesthesiologist is?are they better than a regular pain doctor? I noticed I have one in my medicare that I can try because my other pain doctor all he could do is prescribe me Meds ...maybe the pain anesthesiologist can do more procedures..although I don't know if I'll do anything at this point because I'm about 70% better than I was just with my muscle relaxants although I am still going to try the gabapentin which I hear is great for the nerve tissue..by the way I spoke to two other people who are getting much better from the cymbalta meds but honestly I'm thinking about it I think it's all just a calming of the nerve and that's why valium works so well for Richard and the muscle relaxants work for me don't forget to check out the curable app if you get a chance.. no worries if not..oh and check out dct resistance training for pelvic floor by David mcCoid...he will actually email or Skype with you for free....talk later🤔🙄
The pain anesthesiologist is great because they do all the procedures. The one we’re seeing is very knowledgeable about the pudendal nerve. He’s from Italy, European physicians seem to know more about PN than here in the US, at least from what I have read by patients and articles.
I’m so happy that you have gotten 70% relief! That’s amazing.
Richard starts with the new PT on March 17. And we’ll definitely check out the dct resistance training, sounds interesting.
We’ll keep you informed of his progress and let us know how the acupuncture works!
How is your husband doing? I've heard great things about DCT also acupuncture for tight pelvic floor or at least pain management. Are your docs sure he doesn't have an entrapped pudendal nerve? My ears perked up when you mentioned he was an avid cyclist seeing as cyclists are more likely to be affected by entrapped pudendal nerve than non-cyclists.
Has he gotten an MRI to check for lumbar problems, specifically spinal stenosis in the lower back, degenerative disc disease in the lower back, and/or Tarlov cysts?
Also forgot to add that I'm on cyclobenzaprine and gabapentin now and and they both help a lot
Hi you guys...well I know you don't feel like talking to anyone but I have some info for you...so there are some great Facebook pages for pudental and pelvic floor dysfunction a great Facebook page called pelvic floor dysfunction support for rectal issues.... Also it's not the end of the world if you have to get a colostomy because I'm talking to a lot of people have who have them and quite a few famous people have them..I'm thinking about it and of course it's worse case scenario but they said it's way better having the bag than having all that pain and I believe them
Hi I was just wondering how things are going Richard... And if the PN blocked kicked in and also if he's still trying the valium?I am currently getting some new ideas and I will be in touch with those when I get them together
Sorry this took so long - didnt see the post: pudendalhope.info/node/63
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