Whether PT is worth it or not?

**runningemiles** · 02-24-2008, 12:11 PM

I have gotten my best information and advice from all of you so I am really unsure what to do next. I have a PT exam scheduled for this next week to determine PFD and they would work on biofedback, etc. I feel like right now I am trying so many things and want to spend my money and time on what is the best thing to be trying right now. I currently have to drive 45 minutes if I go to the PT and have a 3 year to find a sitter for. I am already driving 45 minutes once a week trying the tibial nerve stimulation which I am noticing some improvement. My question is, is the PT worth exploring? Thank you for your input. I am still in a considerable amount of pain and this consumes a lot of my life. So I am willing to try anything to get better!

***kadi*** · 02-24-2008, 12:25 PM

PT cut my pain level in half, so for me it was well worth the initial time & $ investment. I did one eight week course of 2x a week (external PT only, I refused internal work*), during the summer (when I'm on vacation - I'm a teacher) & now do home exercises my PT taught me. I think that one thing that really helped me was to insist on using the appointments to teach me what I can do on my own. Staying in PT long term is not an option for me with my work schedule, so having a home program is very important.

Also important is to find a physical therapist who is familiar with IC and pelvic pain!

*the 1 time I did internal work, I got a bladder infection, so refused any more. Just putting that out there to let patients know that even if the PT is "just" external, it can still be very beneficial!

Wishing you success & better days soon!

**Claredale** · 02-24-2008, 01:15 PM

I did it 3 times a week for a couple of months, but I was lucky that I worked 2 blocks from the PT clinic back then. I hated paying the co-pay, but I have to say, I learned how to breath better when I was flaring. I also got to try the Tens unit, which worked for a short time. It was another process my insurance required that I try before having the interstim. I did feel better for a short time after each session.

I can't say that it relieved my pain level by much, but I learned some exercises that helped me through it. Especially not to strain to pee. That was a biggie learning how to relax when I had retention.

T83

**Nancypt** · 02-24-2008, 01:22 PM

Hi,
It has helped me tremendously. I may be biased though ( I am a P.T. who is not trained in pelvic floor dysfunction.
Nancy

**dmarie** · 02-24-2008, 01:59 PM

I've completed 8 sessions so far and the biggest improvements for me have been decrease in pubic bone pain and no more pain after sex!!!!!! I was very skeptical but I'm willing to do anything and everything to get better!!! Next I am planning on trying accupuncture and seeing a nutritionist. I've come a long way in the past year and a half. I still have some low-level symptoms most days but the symptom-free days are heaven and I long to have more of them! My PT is very experienced in the area of pelvic pain and gave some very interesting pointers in resuming pain-free sex!!! PM me if you want more info! Best of luck!
ps. You have such a beautiful family!!!!!

Dawn

**runningemiles** · 02-24-2008, 03:45 PM

Thank you all so much. This is very encouraging. I would like to hear more about the internal vs. external PT. I have already been to the clinic and done a very extensive interview with them and could tell they knew a lot about IC which I was very impressed with. They are wanting to do the exam this week which will include putting an electrode inside of me to determine my muscle tone of the pelvic floor. I too get UTI's very easily and everytime I got an instillation I would get one. They are going to want to do some internal work I think. I could already tell it is going to help me w/ my voiding schedule, retention, water intake, and straining. I am for sure going to go to my appt now so THANK you so much for responding.

**Nancypt** · 02-24-2008, 05:12 PM

I too was worried about the internal work but feel the internal myofascial work helps to relax my muscles and decrease my tone. I think the internal electrical stimulation has also decreased my tone. I am interested in possibly renting a unit for home use
Nancy

**runningemiles** · 02-25-2008, 12:29 AM

The PT told me the whole unit cost around 400 and some insurances are covering it. She was selling one to a patient last week when I was there. Thanks for the input. I need some much help w/ relaxation of that area

**fcombs** · 02-26-2008, 05:34 AM

Originally Posted by runningemiles

I have gotten my best information and advice from all of you so I am really unsure what to do next. I have a PT exam scheduled for this next week to determine PFD and they would work on biofedback, etc. I feel like right now I am trying so many things and want to spend my money and time on what is the best thing to be trying right now. I currently have to drive 45 minutes if I go to the PT and have a 3 year to find a sitter for. I am already driving 45 minutes once a week trying the tibial nerve stimulation which I am noticing some improvement. My question is, is the PT worth exploring? Thank you for your input. I am still in a considerable amount of pain and this consumes a lot of my life. So I am willing to try anything to get better!

Dr. Doggweiler who is well known in IC circles sent me to a physical therapist, and I am willing enough to give it a chance that I pay for it out of my pocket. The PT I go to works for a group that does not accept my insurance. I am giving it a good solid try because this PT does not go at it in any way I have experienced or seen before. I tried biofeedback with no success. My PT does hands on manipulation of my body and gives me very simple things to do at home.

The reason for the manipulation and the exercises is that my body tends to literally get "bent out of shape." One leg was an inch longer than the other after Christmas when I wasn't able to see my PT for several weeks. Here's what happens according to Lindsay:
"I have seen other IC patients who seem to have this problem. One side or the other of the pelvis seems to get torked forward causing one side to appear shorter, and when this happens - this torking forward of the pelvis on one side, it exacerbates the pain in the bladder because it pulls on it. In fact, it pulls on all those muscles and causes irritation and pain." She also states that the way we hold our bodies due to our discomfort might be the reason for this problem.

Lindsay talks to me a lot about planting my feet firmly on the floor, about posture, about doing keigel exercises every time I think about it and pulling my pelvic area inward as I do the keigels. It's not about biofeedback or machines of any kind.

The reason I continue is because the first day I went to see Lindsay I had reached a point where I would limp across the floor a bit after rising from a seated position - just until I kind of "worked it out." I thought I was getting arthritis, but I just had a physical and was tested for arthritis. I don't have RA. Anyway, I remember rising from my chair that day in pain and going into Lindsay's room, and when I walked out that day after a very short time I was not in pain. I remember reveling in that feeling of not being in pain.

I have had interstitial cystitis since 1994 - perhaps longer - but it was in 1994that all the symptoms manifested themselves. I was diagnosed in 1995. And here it is 2008. I've learned a lot. I have run a support group, done telephone volunteer work for newly diagnosed patients. I was a real activist when I got diagnosed because I just couldn't understand why so many people didn't even know about this horrible thing I had. It was just a few years later in 1998 when I was in the throes of my battle with IC that I lost my son - my only child. If there are any of you out there who don't believe in God, I can tell you right now, he's there because he kept his promise during that time. He has said he will not give you more than you can bear, and just prior to my son dying my horrible IC symptoms began to lift. I went through a remission that lasted several years, and I still am not as bad as I was in the beginning.
I cry for my son every day - the IC is secondary to that pain.

I don't know why I chose to tell that story - this is about to have physical therapy or to not have physical therapy. There must have been a reason I was led to tell it, so I'll leave it.

I will end by saying this - I don't think the machines work. At least they didn't work for me. But the actual physical manipulation of my body does work. And don't worry about it hurting ... the manipulation is very gentle and pleasant. If you can find someone who takes this approach, you might be onto something. Try it .... what have you to lose but some time and babysitting money.

Best wishes,

Faye Combs

**Annie2** · 02-26-2008, 06:14 AM

I have had tremendous success with PT. My therapist used both external and internal myofacial trigger point release as well as stretching exercises (NO kegels in the beginning as they can increase muscle strength, tension and increase pain for an ICer!), biofeedback and prescribed a TENS unit with a vaginal probe for use at home to stop muscle spasms & associated pain. My urologist was extremely impressed with my positive results from PT. He and his partners in practice had other patients try it and they, too, had a high rate of success. Because of this, my uro's practice hired their own physical therapist and are seeing great success in treating IC as well as other conditions. My uro told me the success rate they are seeing is not 100%, but is extremely high. As long as you can work with a qualified therapist very knowledgeable and experienced in treating IC and PFD patients, my opinion is it is definitely worth giving it a good and honest try. As my therapist explained, PT cannot cure IC or PFD, but it can be a VERY valuable tool in controling these conditions.

**my3boysmcr** · 02-26-2008, 01:06 PM

My PT does all hands on manipulation and trigger point release. We did not start any internal trigger point release until we saw improvement from my meds and external work. I have improved tremendously from PT! I have been able to have sex without pain in recent weeks. It helps a lot with my back pain and muscle spasms as well. I just discovered that neurontin has been helping me (I went off of it since we didn't know if it does or doesn't). It was making me SO tired! Anyway, my back pain is back and I am feeling the need to go more often than I had been. Going to PT does help. I am starting on Lyrica this weekend to see if we can get results without the side effects from that. I LOVE stim too. That is a godsend at the end of therapy.

**runningemiles** · 02-26-2008, 04:35 PM

Thanks guys for all the responses this really helps.....however I have two ovarian cysts and have to cancel my exam this week as my gyno doesn't want me to do anythign to rupture the cysts. So I have to postpone it until these resolve

**my3boysmcr** · 02-26-2008, 11:50 PM

Originally Posted by runningemiles

Thanks guys for all the responses this really helps.....however I have two ovarian cysts and have to cancel my exam this week as my gyno doesn't want me to do anythign to rupture the cysts. So I have to postpone it until these resolve

Good luck. I see a pelvic pain specialist (he is also an OBGYN) and he is the one who diagnosed PFD. My physical therapist did nothing internal until a few weeks ago. She often tells me where the muscles are spasming and that is what we are trying to "fix"

**blackcatwomon** · 03-04-2008, 06:08 AM

PT was worth it for me for pain reduction. My physical therapist was really awesome in explaining about the pelvic floor muscles and how the pain evolves. I also had to drive about 45 to meet with a therapist that specialized in pelvic floor therapy. I think the best lesson I learned from her was how to be aware of my pelvic floor and conciously relax those muscles. I would say give it try, at least for three or four sessions. Good luck!

Orlene

**sugar** · 03-09-2008, 09:00 AM

I was getting close to giving up on physical therapy when something really cool happened. I read on these boards about an interferential stimulator and my PT ordered one. Then, Dr. Evans PT Wilda called and talked to me about treatment techniques AND she took the time to call my PT and make suggestions of how to best use the iF machine and other treatments. That way we're all on the same page regarding treatment. According to Wilda I need more internal/IF work than exercises. So I used the IF on Fri for 15 minutes and have had less pain this weekend than in months! So I think we're on to something...I called her to give her this positive feedback and she is going to order one asap so I can use it at home. It's little, looks just like a TENS unit that clips on your belt. And she places the electrodes two on the front of the bladder area above the hairline and the other two crossed high up on my thighs where it meets my butt cheeks. This is the first thing that has caused some pain relief w/out meds!!
So needless to say, I'm sticking w/the pT and am glad!
Take care!
Annette