Newly diagnosed with PFD/instability; first round of pelvic floor PT starts this week. What has been your experience with PT?

[leoxvirgo]

Hello,

Since suffering a UTI in November that I let go untreated for three months, I have been experiencing mild pain with orgasm, or even sexual arousal, and some forms of exercise. I experience vulval burning that has now begun to move toward the rectum. Believe it or not, unlike many of the folks here who experience vaginismus symptoms, the only thing that seems to alleviate the discomfort is wearing a tampon or having gentle, penetrative sex. Perhaps there's a 'trigger point' on the interior of my pelvic floor, toward the front (this saga began with dull ache and pressure over the suprapubic area + mild urethral burning; I originally thought I was getting the UTI again and again and was taking OTC PaCran cranberry supplements + Cystex religiously to quell any burgeoning UTI, I even thought I had IC for a moment. I saw a urologist since the burning emerged and the pain began moving toward the rectum, and he referred me to physical therapy for "pelvic floor instability." I experience no incontinence and no excruciating pain (knock on wood) although the muscle pain and spasm I feel after orgasm and exercise is enough to keep me up at night.

I've read mixed experiences with pelvic floor PT on this site; has anyone who has had similar symptoms to mine sought PT and had a good experience? I would really like to begin exercising again and re-experience sexual pleasure!!! Though I am very, very grateful for the level of daily functionality I experience despite these symptoms. If anything, this experience of pelvic floor dysfunction, if thats what it is, has made me eternally grateful for my health and painlessness. Its astounding what I have taken for granted all my life. I have experienced my share of health issues -- bilateral breast reduction in 2015 to reduce shoulder and neck pain + headaches, a few recurrent illnesses, also I had PT in high school because of back pain and numbness with bowel movements (I plan to share this with the PT; maybe I've had a PFD for longer than I thought). That pain has subsided but I still get it sometimes. Also, the original UTI in November presented oddly; I had no "peeing glass" feeling or extreme pain; the UTI presented itself with a lot of suprapubic pressure and achiness that just never went away after the round of antibiotics.

Lastly, thank you all for your courage and eloquence in speaking about your experiences with pelvic pain in its myriad forms. PN, entrapped pudendal nerve, pelvic congestion, etc...I have found dozens and dozens of posts online about women's and men's experiences with these often devastating conditions. I have begun reviewing a lot of posts on this site and am trying to find connections between what folks share on here and what I've found on other sites. My heart goes out to everyone who is suffering with chronic pain. Showing up to life everyday is the hardest, most radical thing we can do as humans, and I commend you all for showing up and battling the pain with the tools you have despite the circumstances -- jobs, families, intimate relationships. The ways in which you have adjusted your lives to manage your pain and discomfort are humbling and inspiring. I encourage you to keep posting on Health Unlocked and be an inspiration to everyone, including those of us who are new to this world of PFD and pelvic pain.

[Skye22]

Thank you for your heartfelt post!!! I have levator-ani syndrome which affects my pelvic floor bladder and Bowel.

I am supported by an amazing health care team who work together to give me some semblance of a normal life. My specialist physio performs internal/external trigger point therapy in conjuction with botox injections into pubirectalis muscles by my consultant.

Therapy doesn't eradict pain it makes the painful spasms a bit more bearable.

At times I can feel all consumed by pain and misery but I celebrate the good days where I can feel like a "normal" person for a little while.

Sharing on this forum is a huge big network of despair and hope, without hope there is no point in existence!! I wish you good health and you find a treatment that works for you!!

[leoxvirgo in reply to Skye22]

I am thrilled to hear you are working with an amazing healthcare team. If anything, this experience is teaching me the value of reaching out and working with the resources I have around me. I am lucky to be employed, able to work, and insured (knock on wood) so I try to take none of that for granted because I know its harder for others. I am not someone who naturally reaches out for help so I have learned how to do that over the past few months.

Good to hear that your PT makes the spasms more bearable. Have you had luck, overall, with the Botox injections? I have heard people have mixed results. its amazing how much people's experiences with pelvic floor problems can vary. Thank you for the kind post and I wish you nothing but the best and for more reasons to celebrate. That's the key to life, I think -- celebrating the good days!

[Skye22 in reply to leoxvirgo]

At first I was dubious about botox as not many people had good experiences. I had tried everything else and had nothing to lose. First 2/3weeks had an increase in pain but it was bearable. After this I definately noticed a difference, I could sit on my bottom for longer periods and had longer breaks between flare ups.

I had a double procedure where I was given injections into bladder for incontinence, the outcome was very pronounced, I had about 80% control of my bladder back and less trips to the toilet!!! So overall treatment was beneficial!!!

It's been about 5mths since I had the treatment and now going back to where I was pre injections. Painful spasms in pelvic floor are back with a vengeance and my bladder control is now very limited, about 40%control, so It's a pronounced difference. It's now evident I need a further course of treatment, awaiting appointment for clinic.

My advice to others would be to have realistic expectations about effectiveness of treatment, injections are not a cure, they help relieve symptoms depending on what condition you have. And as we are all different we will have a variety of successes.

[kalecolbe12 in reply to Skye22]

I have heard people who get 4-5 rounds of Botox can sometimes be cured or it gets a lot less

[kalecolbe12]

I have experienced a lot of help with pelvic floor PT ..i have pelvic floor dysfunction with some urinary symptoms but mainly rectal symptoms which we think was from yours of butt clenching due to stressful situation I was in and that compromised my inferior rectal branch of my pudendal nerve so just trying to undo it will take quite a long time I have been going to pelvic floor physical therapy once a week for 8 months and now I am down to once a month but I diligently do stretches breathing exercise some resistance exercises mindfulness meditation and I have needed some Meds to break some of the pain cycle because I was in lot of pain after bowel movements for a while .I also had some perennial pain after sex because the pelvic floor is all connected and the muscle spasm and pain can travel.

I found the pelvic PT to be a big support to me also mentally because I know that pelvic floor physical therapist really understand this condition where as a lot of medical specialists really don't and they are afraid of it because they just throw things out there and hope they stick ...some people get unecessary surgeries too..

the last 3 weeks has been my best I have been much better and of course I expect a flare-up now and again...especially if I am in a stressful situation I can feel a direct connection but the thing is once your brain is in the pain pattern it's hard to undo that connection...

[leoxvirgo in reply to kalecolbe12]

Hi there,

Thanks for this response. I am thrilled to hear you have had luck with PT. I have seen your posts on other threads on this site and I am glad you responded to mine too <3 . I had my 1st PT appt yesterday and I too was so comforted mentally by the PT's knowledge and demeanor. She rly took the time to figure out what's going on -- WHERE is the pain, WHAT are the triggers, HOW long does a flare last, etc. She in no way just assigned me a treatment regimen and left me on my own; she was very thorough in her exam and she is obviously very passionate about what she does.

I am truly shocked at how much the mind-body connection plays a role here. The PT did some internal work and showed me how to do the 'clock' stretches at home. I did them upon returning home and felt good, and then the fear hit me of "will the pain come back?" "oh my god, I have no pain, I feel so good, does that mean my life will be normal again? What if its not?". Upon feeling these fearful thoughts I immediately felt my muscles tense up and had some tightness symptoms. It is truly wild how our minds "remember" pain and where it lives in the body.

Do you have problems with sex other than the perineal pain? Do you get spasms after sex? One of my main problems is having to avoid sex because of spasms...its no fun! I am hoping to incorporate more mindfulness & meditation into my life because of this experience. Perhaps this is all an opportunity for me to get into a better mental hygiene routine...I certainly have been going out late at night less because of all of this, lol! I will do the exercises later today and hope that my hip muscles open up a bit to reduce urinary symptoms. I was so shocked when she was doing the exercises and I felt the urinary burn and she was able to say confidently that the tight muscles in my pelvic floor near my right hip are causing the UTI-like feeling. Bodies are so weird but I'm so glad I got hooked up with a PT who seems knowledgable and kind. Thank you!