Poor advice from Physiotherapist?

[Lorelei M]

I'm not sure if this is the right place to post. I welcome any input

I have had PN for the past 8 years. 46yFemale. 8 Years ago I had a rare complicated severe fungal bladder infection, followed by several years of brief infections and IC flare ups due to altered bladder tissues. Prior to that I had no pain history at all no history of any issues, super active yoga teacher, cyclist, dancer, etc. This left me with classic IC which I still manage today with diet and bladder wall medications. It also left me with some dysfunction in the pelvic floor muscles and the PN. I get pain increased with sitting. If I move around all day without sitting---cooking walking etc---I will have almost no pain. Sitting brings on bladder urgency and deep burning pelvic pain. If I do any bout of heavy lifting or straining, or get too tight in my legs (cycling, lunges) things worsen. This tightens things around the nerve to the point where then I start getting spasms with bowel movements which then lead to bladder and urethral spasms, and pain for hours, along with distention and swelling of the abdomen. Because of the IC I have to be cautious to avoid caffeine, the tiniest amount of which causes bladder spasm. Recently as I am starting perimenopause I started getting vulvodynia and clitorodynia, more fungal infection, but I am working on that with doctors, hormone folks etc. I am a high hope positive person. I think I am a relatively mild case and I have had periods of low symptoms/near remission at times for months to years, until I have triggers like bad IC flare ups or heavy lifting or too much sitting etc. Then it takes a few months of PT and medications and not sitting to calm the nerve down.

Typically the PT I have found helpful is strong manual release in the pelvic floor to get pressure off the nerve in the posterior section--the obturator internus, the piriformis etc, as well as deep external release of the abs, the adductors etc. I had a small adductor tear after the IC and I think it is involved. If I use my abs in any activity things tighten and I can sit less, same with lunges. I do tons of heat therapy (bath, sauna) I get relief from antispasmodic suppositories (belladona, valium, baclofen) when needed, I get huge relief from bladder wall drugs (but they have risky side effects). I think the IC pain/inflammation and the years of infections impacted the nerve so it is easily irritated when compressed by sitting or by tight muscles---and there are spasm signals that create more tension. IC flares don't help--if I can't get to a washroom during a flare it is hard on the muscles and nerves, and there is a lot of tension and inflammation--so managing IC bladder flares is key too.

Anyway: finding effective PT has been a challenge. All in all I have had 11 pelvic PTs and I could write an entertaining story about the random things they have told me. When I first had this injury there were few pelvic PTs in my area and long waitlists..so eventually I flew to an awesome PT in the USA (Sarton clinic, works with Dr Hibner) and they helped to get me out of pain which last a couple of years with home care. Then I found an amazing PT closed to my home (Canada) who can do the deep manual release and she also got me out of a flare after 5 sessions which lasted 8 months (I also used amitriptyline but I can't tolerate the heart side effects) until I did heavy lifting again and lots of sitting (sometimes it is unavoidable). The worst flare I had was from lifting a heavy recliner up a flight of stairs---I was well for so long I forgot I should not lift. So this was deep squat lifting--lots of stretch of the PN and load on the pelvic floor. No pain in the moment but started up the Pn spasms the following days with bowel movements etc..and bladder urgency, frequency.

Anyway when I had to move I tried out four new PTs, none of whom knew about PN..(despite saying they did). It was clear to me from the first session they were suspecting central sensitization which is not something I have much of, as my pain is more chemical/inflammatory (IC) and then mechanical compression and neuropathic. Also it is a matter of skill, as it is hard to do the effective trigger point work and it takes strong sensitive hands. But these PTs will say things like "let's get you back on your bike, and you can do leg workouts etc." :

So I have been working with a PT (whom I perceived is experience but not with PN) and I am constantly pushing back on her information which of course is a very delicate dance. The IMS is helpful that she is doing, but she seems to think I should be sitting more--that I just need to do "graded exposure" and desensitize my nerve to sitting more. Same thing with wearing jeans etc and exercise (now that she realized I have cliterodynia she has changed that advice). Last time she told me I can do ab exercises and leg workouts (lunges, clam shells) as long as I make sure my pelvic floor is relaxed after wards. I think this is incorrect. I can tune in to my pelvic floor even after heavy lifting--and it won't protect me from a flare up. The problem is not the pelvic floor being hypertonic and stuck on all the time (because it is not)..I perceive that any instance of squeezing those muscles irritates the nerve (during the lifting) and that bringing more tension like to the trunk and abs brings a higher resting tone and tightness to the trunk which does tie into the pelvis..and if the nerve gets squeezed it starts to create pain and spasms which then creates more tightness..if the spasms are not happening I am less tight, but once that is switched on again, things get tight.
I think when things are tight the nerve may get stretched and not slip properly so that lunges and sitting and deep squats are not good. I perceive she does not really believe the Pn doesn't move well and thinks it is all about the pelvic floor tension....but I do best when avoiding hip flexion. I sit on cushions with the middle cut out (helps) and I often recline with my legs open (helps). Sitting upright and leaning over a desk or driving position is the worst. I perceive it like a sunburn---the effects accumulate day by day so I have to pace out my sitting time and use it for important tasks.

This I think is part of a PT bias towards the CSS thinking where they think you need to move more not less--and that the patient is having "Fear and avoidance" of the activity which is causing the pain. This is not the case for me because I love activity...and I have to use restraint not to do it--also I have vanity like everyone else and prefer not to be so soft. And most of my flares are from me doing activities and thinking it will be fine because I don't typically get pain until later, after the activity.
But the last PT who told me to exercise more---well I did..I did 2 weeks of daily glute and leg activities and ended up in a massive flare. I think it tightens the piriformis and squeezes the nerve? However also at the same time I had tried a TENS for 2 weeks which may have also been involved (including on my inner thigh) which I think maybe got the upper branch involved (clitorodynia is new ).

My other PT who is helpful and great (but who lives in another town ) is also perplexed about why I can run. I do find mild running helpful...and long walks helpful basically anything I am doing that generates circulation around the nerve helps to reduce pain for me. The trouble of course is some of those activities tighten my muscles later---but if am mostly moving around and not sitting I will have lower pain..this has been the trend for me for years, And I need to avoid abs and lifting etc. I think for me the benefit of circulation around the nerve outweights the load on the pelvic floor.

My current treatment plan is to work on the hormone tissue side for the vulva and clitoris and to continue exploring antispasmodics and to travel farther distance to see the PT who helped me before for internal release. And I will continue with IMS. My goal is to get back to work (clinical counsellor--lots of static listening to people, and research) because I am currently in disability mode. I just feel confused about exercise and I don't think the PTs can guide me on this because they don't really know. (I am consulting with an expert PT in the USA on Zoom--I am in Canada and I will ask her about this later).

I welcome any input if someone can explain to me how things could be working also so I could explain to the PT here why it is not as simple as relaxing the pelvic floor and then doing any activity I want. They seem to think if I just breath well and relax the pelvic floor (Even while lifting or sitting) then I can lift or sit or do lunges. This is just incorrect in my view and I don't think they have actually worked with PN before or read about PN. I will be the one paying the price for that advice...so I want to be cautious and also find ways to be active. I'm just gonna continue with mild functional activities..also the PT bias is "to get you to do more on your own" which is absurd because so many hours of my day are devoted already to reducing symptoms. The few PTs who know PN don't say that to me, and their PT (deep manual release) helps me to have more free time and more sit time.

I welcome any tips on exercises that are ok right now I do walking, brief mild short runs, yoga..I got flared up from swimming but will try again. I need to not tighten my adductors. It is not fear--it is legit mechanical.

Thank you!!

[Violet M]

Hi Lorelei,

Welcome to the forum. The pelvis is pretty complex and everyone is different, but from my own experience, lunges and weightlifting were what started my pudendal neuralgia problems. I didn’t realize it at first because typically my pain didn’t happen at the time I was exercising but would flare up several hours later or the following day. Eventually I started having pain all the time and couldn’t sit much. So I don’t agree with the PT’s who are telling you to keep up the intense exercise. If your pudendal nerve is irritated (and it sounds like it is based on where your pain is) then it doesn’t make much sense to keep doing the things that irritate it. Mechanically, if someone has a nerve entrapment, the nerve is not able to glide smoothly between the ligaments if the space between them is too tight Or sometimes the nerve is caught in fascia and can’t glide smoothly so movement irritates it. That’s what happened to me and all the movement/exercise/ positive thinking in the world wouldn’t have helped it. I can’t say what is causing nerve irritation for you, but what I described above is a possibility to consider. So you asked what exercise you can do. It’s partly a matter of trial and error for you. Whatever you can do that still allows you to keep your pain levels low might be ok - like walking or even jogging if that doesn’t bother you. Certain kicks with swimming are typically better than others if you have nerve entrapment, with the frog kick being the worst. Since I had nerve release survey, I can walk, hike, run up and down stairs, and do step aerobics with light weights, and ride a stationary bike for short periods. I can’t jog or lift heavy weights. Before surgery I couldn’t do anything active — even walking was painful so I was mostly in bed. But it doesn’t sound like you are anywhere near that point and if you are careful hopefully you can prevent that from happening.

So I think you are smart to follow your instincts and not follow PT advice you aren’t comfortable with. And if sitting is painful I don’t agree that it’s something you can desensitize yourself to do without pain. Doesn’t sound like the pain is all in your head. Many of us on this forum have heard that “all in your head” nonsense before.

Violet

[Lorelei M]

Thank you so much Violet

Your response is very validating. Yes I just perceive many of the PTs are operating from a different paradigm which discounts the possibility of a nerve that is irritated and doesn't slip so easily. I think with all the big infections I had it is unlikely there is not some adhesion somewhere or some stickiness. I also think that the amount of pain and inflammation caused a lot of spasming in response and the sphincter muscles controlling the bladder and all the muscles in charge of holding urine in and letting out got 70 years of normal workout over the span of a year. It just was too much bracing and pain holding with bladder infections and IC, racing for a toilet.
The result being that I think those muscles can squeeze the nerve and in turn the nerve creates spasms which build more tightness around itself. I'm going to travel longer distances to see the PT who has helped me the most, and find a gentle way to push back on the local PT's advice around exercise and sitting (because they want to follow up each week on whether I did my homework but I think the homework is incorrect and so then I am perceived as avoidant and non compliant). I"m planning to use drugs a bit more if I can find some that work and keep up with external work also ( massage etc). I love to exercise so much that when someone so much as hints that it is ok a part of my subconscious mind leaps into those activities in denial and wishful thinking knowing they are not wise---and I pay the price later.

I am planning at a later date to apply to get an MRI with Dr Potter just to rule out anything visible like a vein or something, but otherwise I will continue seeking expert PT guidance from the USA clinic (pelvicpainrehab) to help guide the PTs in my local area. I notice if I do absolutely nothing and am super soft and super thin (not healthy) often I can have low pain...but this is not good for my health. If I do exercise, then I need to do more stretching, rolling, massage because things get tighter way faster since the injury...as though the pelvic muscles will spasm with tension I guess. I perceive that I am the myofascial type which responds well to musculoskeletal interventions...and the myoneural type one of the articles on this site describes---where there is a feedback loop between and irritated nerve and then tight muscles...but it started with the bladder infections irritating the nerves and muscles...it didn't start from poor breathing or stress and working on those things really doesn't cut it. Certainly the nerve has some dysfunction under certain conditions (spasms, burning, pain etc) in all of the branches (rectal, deep pelvis, urethral, clitoral--the latter being more recent). I need to also really manage the tissue side from a perimenopause, infections (vulva, clitoris, urethra) and bladder standpoint because my bladder lining is more sensitive to a wide range of commonly caustic foods and if I get that inflammation down it gives the nerves and muscles less to respond to and tense up about.

Many thanks!

[Violet M]

You certainly don't sound like the avoidant and non-compliant type and any PT who makes you feel that way might need to rethink what they are telling you. Obviously you love to exercise so why would you avoid it unless it's making you worse?

Anyway, I'm wishing you success with your plan and I hope you will be able to get back to at least some exercise that you can tolerate eventually. About a year after my PNE surgery I started exercising very slowly and whenever anything seemed to cause a flare-up I quit doing it and found something else that worked. Today, almost 20 years later, I can do more than I ever dreamed I could when I was going through the worst of PN. With your positive attitude, I think you will be able to figure this out.

Violet

[onlysams]

My mom had a relentless battle with pelvic floor dysfunction and severe lower back pain, which seemed to spiral after a minor fall that didn't seem like a big deal at the time. She went from being an avid gardener and walker to barely being able to sit or stand without discomfort. Like you, she tried numerous treatments, from medication to various physiotherapists, without much lasting relief. It was a tough period, seeing her so limited in her activities and struggling to find a solution that worked for her.

What made a significant difference for her was working with a physiotherapist who truly understood her condition and could provide the right mix of therapy and exercise advice. Interestingly, she found great help at Art of Mobility in Mississauga with a physio named Justin Mah. Justin focused on gentle, specific exercises that didn't aggravate her condition, alongside manual therapy. His approach was cautious, avoiding anything that could potentially trigger a flare-up, while still encouraging gradual progress. His advice was always clear and tailored to her specific needs, which really helped in managing her pain more effectively.