I’m in treatment for PFD and into my sixth month of pelvic physical therapy. It’s been slow. It’s been painful. But I finally felt I was making progress.
At my pt’s suggestion, I opted for Botox injections into my pelvic muscles to speed recovery. It’s been just over two weeks since the procedure and I feel my pain has actually increased! Like as bad as when I first started therapy.
For what it’s worth, my pt does feel the muscles have relaxed. I just feel like hot garbage.
I’ve read here that several people have had this same experience and that it gave way to greater relief after 2-4 weeks. I hope I’m one of them. If anyone has had experience with this treatment, I’d love to hear about it—especially if it’s hopeful.
Thank you!!!
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wreckedum
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Yes I havnt had Botox yet.. I am in pt fo pfd also and it's my fourth month and I am also on Flexeril to relax my muscles I finally feel like I'm making some progress but most of the PT is on the external trigger points and mobilization as well as pudental nerve gliding as I am unable to tolerate the pain after rectal internal PT.long story short my pt has suggested Botox but I am going to try internal valium first.It seems Botox works for some very well but not for others and all say it takes a few weeks to adjust to it ... As with PT it's worse before it gets better
When my flares were at there worse I used valium and yoga...the yoga and the p/t really helped me a book to read is Heal Pelvic Pain by Amy stein it was what helped me turn the corner
I am hoping to get some from my gynecologist...but it is from a compounding pharmacy...usually a mixture of valium , lidocaine..maybe some baclofen...depending on what doc prescribes
Had bad experience. At around 2 weeks my muscles in pelvic floor got much tighter- very bizarre. My PT was concerned I would worsen my pudendal neuralgia. The pain did not get much worse. I advise people against botox for “pelvic floor” which is what my doctor did. The exact muscle needs to be identified and injected. My understanding is that Botox does not spread that much from the original injection site so the idea of injecting the entire pelvic floor seems a little bit silly to me (and my physical therapist who was beside herself). Also, the dose might be important. My symptoms lasted for six months whereas all previous injections of Botox lasted only 2 1/2 to 3 months. So not really sure how much he injected and that might’ve been part of the problem.
Hi, kellerfly. I’m much better than when I wrote this. Things eased up and I started making real gains in PT. Last couple of days have been a bit tough but all in all I’m trending upward. Still in it. Still fighting. But I’m SO much better than I was. They say I’ll go all the way. ❤️
Hi there. First off, let me say I am so sorry you are going through this. It’s a nightmare, it’s not your fault, and it can and will end.
I did experience an increase in pain after Botox and it was awful. Was it the injections? Or was it a neurogenic pain response fueled by fear over these symptoms and a very traumatic medical procedure? Months later, I’m convinced it was the latter.
Where am I now? I’m almost pain free (let’s say 90%) and getting better all the time. I’m doing phenomenally well and here’s the thing: it wasn’t PT or injections or ointments or medication or any of that. It was understanding the role the brain plays in chronic pain and then beginning a long, difficult, but ultimately rewarding process of using mental techniques to cause my brain to literally rewire itself and deactivate the pain. Sounds nuts, I know. But your brain rewires itself everyday. You memorize a dirty limerick, that’s your brain rewiring itself. 😉
And I was VERY resistant to the concepts. So resistant! “More PT! More medicine!” I said. “Somebody else fix me!” But this is real science and after trying everything else, and getting nowhere, I had to finally acknowledge the many pelvic pain success stories I’d encountered on TMSWiki and begin to have some faith. About 8 months later of doing this work (time is meaningless since everyone is different but that’s how long it’s taken for me) I am feeling so much better physically and emotionally. And you can too. I know it.
With that in mind, here are some tools I recommend for beginning this journey:
Alan Gordon’s 21-Day completely free pain program on TMS Wiki (tmswiki.org/forum/painrecov... as well as his podcast “Tell Me About Your Pain.”
Dan Buglio’s group “Pain Free You” on Facebook has a video a day on this subject which can help keep you on track.
If you want a personal guide, I really recommend the good people at The Pain Psychology Center who conduct sessions over Skype on this very subject (painpsychologycenter.com). They are fantastic. Probably the best thing I did in this whole process was reaching out to them. They will do a free initial consult over the phone.
Also, success stories on TMSWiki can give you hope. Posts by ezer, c90danwaiel, carbonevo, jason32, sparrow17, mc1986, and bronos24 come to mind. Check a few of those out. The story is always the same: they stopped focusing on the physical, learned to address the psychological.
You could go down this route for a long time of course: books by John Sarno (sort of the Freud of mind/body pain recovery) and Lorimer Moseley (modern day pain researcher who has a great TED talk). And indeed I encourage you to soak up all the information you can at first to build confidence. Eventually the need for that falls away, but early on it’s so helpful and I believe so important.
I realize that this can be a lot to digest, especially after going through Botox, but I’m here to tell you this approach works. Ultimately, this is a condition of FEAR and PREOCCUPATION. The fear tells the brain that the sensations are dangerous, as does the constant focus on it. Pain is not a damage signal, it is a danger signal. Your body is almost certainly totally physically healthy. Therefore, resolve the fear, and the pain begins to fade. But this fear or anxiety can come from a variety of sources, not just symptoms. It predates the symptoms (which is why we got them in the first place!) So the solution is not merely to regularly and with repetition feel your pelvic issues from a place of safety. That’s half of it. But it is also to learn where in your life you are unwittingly activating fight-or-flight and thus putting your body in a state where small issues become amplified and turn into very real intense ongoing pain.
It’s a journey, but it’s fascinating, and ultimately I believe it is the path to full recovery. I hope this information helps you. No matter what, if you stay committed, you will get there. This process is very personal, with many routes to the same destination, and you will eventually work it out for yourself.
Total healing is absolutely achievable, but not through the ways we are used to. We have to learn new ways because it’s the old ones that got us here.
Gosh thank you so much for such a detailed and positive message. It means a lot, I can tell you’ve been in the same place as me. You’ve given me some good information there that I’m going to digest and look at in the morning. Thanks so much. I’m so pleased to hear you are well!!!!
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