Physio techniques and experiences

[White Falcon]

In Dec. 2009, I saw a physiotherapist and occuptional therapist (she is both) who specializes in treating vaginal pain. She was very nice, very careful, considerate, understanding, etc. I was very impressed, and she seemed to know her stuff.

Unfortunately, my first visit involved an "assessment" which included finger(s) in both vagina and anus, pressing and feeling around, to assess the situation. This examination increased my pain considerably, and the increased pain had not subsided one week later when I saw her again. She was very concerned, and on the second visit, she opted for a cold laser treatment. This involved inserting a probe, about the size of a thick pen into the vagina. Well, she may as well have been inserting a lit match! I actually screamed and scooted away. Went home in agony again. A week later, I returned for a third appointment, and just had an OT consult to get some tips as to how I might be able to improve my sitting at work (I was still trying to work part-time back then). She recommended a 65 cm exercise ball rather than a chair. On the ball, I can sort of roll to one side and be kind of leaning on cheek or the other, or roll backwards or forwards to alleviate pain. My employer had already bought me a kneeling chair (I gave them a Dr. note for it). Also she suggested sitting on a u-shaped beanbag pillow, like people use around their necks. These may be useful things for those of you who are still able to tolerate some sitting at times. She suggested a nerve block and looking into the possibility of endo entrapping the nerve. And that was the end of my physio experience.

I am wondering what sorts of things other people are doing at their physio appointments. I'm debating whether its worthwhile to try a different physio. Would appreciate details on what others have experienced. Thanks.

[catherine a]

I think most of us would agree that if the internal phsyio makes you worse then don't do it. Opt for external physiotherapy for now but you must seek out a specialist in PN issues. Not many physio's are familiar with Pudendal Neuralgia. It's best to seek out one of the PN specialsits nearest to where you live. Like you, I was in horrendous pain for weeks after having internal physio. I stopped doing it for a very long time (2 years) and just continued my hydrotherapy exercises until I could tolerate the internal vaginal insertion again. It was 3 years after PNE surgery before I could tolerate internal examination.

Catherine.

[Lernica]

I had a similar experience to Catherine's -- very bad flares after internal work. So after six PT sessions from February to April, I stopped. My PT concurred on the basis that my nerve was too "irritable" to work on. And although external PT work did not result in pain flares, it was of no benefit whatsoever for my pain.

[HerMajesty]

I had joint work done; most people consider this a Chiropractic thing but there is a subset of physical therapy called PT Manual Therapy which involves joint mobilisation. It helped me considerably. I never got help (and was often exacerbated) by any kind of hands-on work to the pelvic area itself. I had neurogenic bladder when I started PT and did get moderate relief of bladder symptoms, from soft tissue deep trigger point massage done on my abdomen and inner thighs, not pelvic area. My bladder was also helped by certain core stabilization excercises, particularly those that involved strengthening the transverse abdominal muscles. However most people I have seen discussing core excercises on this board, were exacerbated not helped.
Bottom line:
1. all the help I got from soft tissue PT and excercise was relief from neurogenic bladder. If you do not have bladder issues as part of your PN, I wouldn't really expect any results.
2. If it flares your pain don't do it! Sometimes you will hear from PT's that it has to get worse before it gets better. As far as i have been able to tell that is an absolute fallacy. I have said this many times and never had any patient contradict me and say, "no, I flared in PT but I stuck with it and got better". Doesn't happen. The gains I made in PT I made very quickly without any flare.
3. Joint work did help my neuropathy and has potential to help the subset of PNE patients whose entrapment is mechanical due to pelvic misalignment. If the PT you are seeing did not examine you structurally to look for pelvic joint issues, that is probably not within her skill set and you might need to shop around.

[nyt]

Yesterday when I saw Dr. Hibner's NP, Lisa, for my post-op visit I talked with her about my bad experiences with pelvic PT and my concerns that they would make me worse and undo any good this surgery has done. She said they had numerous conversations in the office about whether bad PT is better than no PT and the bottom line is they feel "No PT is better than bad PT." She said the best exercies is walking and to gradually progress with that as tolerated. So my plan is to walk a little everday, as tolerated, and then at 8 weeks start back my water therapy with gentle water walking. Water walking is what Dr. Dellon recommends as it helps desentize the nerve. If I continue to have pelvic floor spasms than I will look into trigger point injections instead of manual therapy.

[Karyn]

Great topic!
I was just talking to a fellow PNE friend the other day about this very subject.

my first visit involved an "assessment" which included finger(s) in both vagina and anus, pressing and feeling around, to assess the situation.

Been there, done that and personally, I will NEVER sign up for internal pelvic floor PT ever again.
Is there anyone out there who's benefitted from it?

If it flares your pain don't do it! Sometimes you will hear from PT's that it has to get worse before it gets better. As far as i have been able to tell that is an absolute fallacy. I have said this many times and never had any patient contradict me and say, "no, I flared in PT but I stuck with it and got better". Doesn't happen. The gains I made in PT I made very quickly without any flare.

I agree, HM! What type of PT specializes in joint mobilization? I remember my Pelvic Floor PT repeatedly working on my SIJ, to no avail. Are there other therapists out there, besides PF therapists who do this type of work?

[HerMajesty]

Hi Karyn,

A couple of things from your post, 1st you asked if anyone has ever benefitted from internal; I do want to clarify that while I got no benefit from internal trigger point work, I did, as I think I mentioned to you a long time ago, get some temporary relief from an internal pudendal nerve mobilisation technique used by Dr. Weiss...so I suppose some people might get some value depending on what is being done up there! But still, it is temporary relief not real improvement which might not make it worth the risk of a flare.

Manual Therapy is really an emergent technique in Pelvic Floor PT; from my work in the field I have noted that it is quite popular among Sports PT's and sometimes Certified Athletic Trainers. The problem is convincing a Sports practice to let a pelvic floor patient through the door instead of turning them away at the front desk and telling them to go to a Pelvic Floor PT. I have been cultivating Hesch-trained Sports PT's for awhile, collecting direct - line phone numbers to bypass the front desk and assuring them that it is OK to see a Pelvic Floor client simply to correct underlying joint dysfunction, then send them on to a Pelvic Floor PT, no need to be intimidated because a pelvis is a pelvis is a pelvis whether you are aligning it for sports performance or another reason. Once I have assured them that they don't need to become gynecologists, most Manual Therapy trained Sports PT's are happy to see pelvic floor clients.

[White Falcon]

Lernica, I understand you are doing something else recently involving PT. Any news or new info to share?

Thanks for all the feedback everyone. Here I am, 10 months later, and still nothing has changed! My latest specialist was a big disappointment - all she could recommend was mindfulness - basically, I should meditate and my pain will get better from that! Never mind the fact that I've been practicing meditation and relaxation for 30 years.... Wasted my time through 4 hrs of answering questions about my first sexual experience, my parents' sex life and relationship, were they mean to me, blah, blah, blah... Honestly, what a step backwards. Especially when there is research that clearly proves women with vulvodynia are no more or less likely to have been abused or to have mental health problems than women without pain. My husband had to use his vacation time to take me to these silly appointments - and they interviewed him, too, trying to see if he was the problem! He was not impressed.

It seems that no one in BC is doing any kind of pelvic trigger point injections. All the genital pain gurus around here are believers in cognitive behaviour therapy and the new buzzword, mindfulness, to treat this type of pain. These doctors are in charge of all programs being offered and teach at the university, too, so their approach is the only thing on offer. I may start looking for someone out-of-province to do injections.

[Lernica]

Lernica, I understand you are doing something else recently involving PT. Any news or new info to share?

White Falcon,

I'm sorry you haven't made any progress PT-wise. Please see the thread titled "Lernica's going to Cornwall for ESWT!" for an update on my situation. You can use the "Search" button above to find it. (Type in "Cornwall".)

[janetm2]

I guess I am very lucky to not get flared from internal treatments. I am 9 months post op and getting better ( less pain and able to sit enough to work 7 hours a day). The best treatments for my pain are internal rectal as that is where my pain was pre surgery and now post. It is a shame others are not having good results. I am also going to acupuncture.
Janet