I started seeing a physiotherapist specialist in pelvic pain, three weeks ago, and the pain has definitely got worse rather than improving. She has been teaching me some exercises, a combination of respiration + contraction and release of the pelvic floor muscles, that I also have to do at home every day for 10 minutes. I feel like my muscles are much more contracted now than when I started, and sitting is more painful. Has anyone else experienced this? Am I supposed to just keep trying? Is this what PT appointments are supposed to be? She hasn't done any trigger point release at all. She is the only specialist in my area
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claud89
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I’m sorry that you aren’t feeling much benefit from it so far. Pelvic physiotherapy can seem like a long process. I’ve had it myself and think I was close to a year before I felt the pelvic floor dysfunction had resolved which was caused by 15+ years of living with 3 pelvic pain conditions. You haven’t mentioned when you you started having pelvic pain. I’m going to make a suggestion and that’s to continue with the physiotherapy. Why have I said that? Ok imagine that as a child you encounter a stressful situation- being shouted at at home or school. This is a stressful situation which causes most of us to instinctively to clench our pelvic floor. Over our childhood and teens many of us will have encountered these situations where we are made jump, stressed etc. The pelvic floor has started to tighten as a result but not enough to cause pelvic floor dysfunction and pain. Years later we start getting pelvic pain, maybe not all of the time but enough for us to continue to clench the pelvic floor. This time round the stress is whatever is generating the pain - back pain, pelvic pain from endometriosis, PNE etc. Sometimes pelvic floor dysfunction can occur on its own due to chronic stress so isn’t always the result of illness. Pelvic floor dysfunction pain can be very painful and should be used a lot earlier on in a lot of pelvic pain conditions. This is in addition to us still clenching our pelvic floor in times of stress - a manager at work we don’t like, having an argument etc. The pelvic pain is something that is with most of us a lot/all of the time so unconsciously we clench the pelvic floor more and more which causes the muscles to start generating pain on top of the pelvic pain we are already experiencing. With this in mind it’s no wonder that it takes such a long time to feel any benefit from physiotherapy. An easier way to think of this is an elastic band. If you hold each end in your fingers it looks normal. As you start to twist it gradually tension is beginning to develop and before long you have an elastic band with knots forming. This is similar to your pelvic floor. It has tightened areas that to the trained person feel like knots within the muscle. Not a perfect analogy but hopefully you can see what I mean. Understandably we want quick fixes and treatments that work straight away. But recovery isn’t linear. Sometimes it can take months before a small glimmer of hope can be felt only to take a step back a week later. It’s one of the reasons many people don’t keep with physiotherapy but I would urge you to stay with it and do your. daily exercises. The relaxation part she’s doing with you is an important stepping stone in getting you to relax your pelvic floor instead of clenching it. The breathing equally is important as many of us don’t use the full capacity of our lungs when we breath either because we’ve done it since a child or as a response to pain. When you have your next session you could always mention the trigger point release, it might be her plan to use this later on in other treatment sessions. I hope some of this helps and if I find some useful information on pelvic floor dysfunction and pain etc I will post it on here
Thank you so much dear Alaine for taking the time to write such a detailed reply! It definitely gave me the strength to stay and try harder. I will mention trigger point release when I go next. I think I am feeling so discouraged because before going I felt like I had reached a sort of (delicate) balance, with pain at an acceptable level. I decided to try PT because I wanted to heal completely rather than just hoping the balance would never be disturbed! I started having serious pelvic pain in March 2020, diagnosed in August 2021 as caused by hypertonic pelvic floor, pudendal neuralgia, adenomyosis and suspected endometriosis (although the last one hasn't been shown by MRI scans).
Hi! You’re not alone and this is a wonderful site I found thanks to Alaine and all the wonderful people who created and monitor.
Alaine is 100% and agree the relaxation and breathing should not be taken lightly. They may be part of a bigger vision for your therapist and definitely ask for your physios . Credentials and specifically what advanced therapy levels he/ she has accomplished for example have they taken Herman and Wallace 1, 2A, 2B etc. Specifically find out if they have advanced certifications in Myofascial and Soft Tissue Mobilization particularly from IPA Institute of Physical Therapy.
It is essential to have a proper diagnosis and ask yourself the question “Was there an event?” Often times there is no event and just emotional years that cause the boy to squeezes. However if you’ve had an event such as a surgery it could be scar tissue and all the breathing in the world will not end the cause but help manage the pain.
There is a Myopain center (US) that uses dry needling techniques if it is on the surface and not behind the bone. Extremely effective on scars if that is what you have.
You may have to travel to find a Physio skilled and practiced to find and treat with trigger points.
Thank you so much! I think that rather than the breathing in itself, what confuses me is the contractions before the release. Isn't that supposed to make the hypertone worse?
I've checked her CV (she uploaded it online), and she has definitely been very active in the field of pelvic dysfunctions, but she doesn't have the certifications you specify. I'm guessing they're more US-centric (I'm currently based in Northern Italy, hoping to move back to London in March).
At the end of Feb I have an appt with another specialist, about 250km from here, and I've been assured she does trigger points. Fingers crossed!
There were several events: an incredibly stressful period, years of intense cycling, years of recurrent UTIs, plus underlying conditions such as endo+adenomyosis; no surgery.
Hi Claud89...I’ve just been reading through your story and wondered if I could ask a question. What are your daily symptoms of Pelvic Floor Dysfunction?? At the moment I’m waiting to see a specialist, but the area around my perineum always feels like a clenched fist. When I start to feel the urge to urinate, rather than the muscles relax, they get more and more tight and sore. I seem to pee about 90 percent ok but really struggle to finish and it feels like a spasm where I keep having to push a bit more out before I can walk away. I’m also aware of the fact that I’m becoming more constipated lately too and my mood is definitely getting lower and lower. Are these symptoms any similar to what you experience with PFD.
Hi JD, of course! My symptoms are more concentrated on the vulva and urinary tract, rather than affecting the perineum/digestion (but I have been told that it is equally common to have that area involved). They manifest as vulvodynia/vestibulitis (painful intercourse/penetration), incapability to sit for long periods (especially on hard surfaces, I don't last 5 minutes!), and a weird sensation of having to pee all the time, similar to cystitis, with a burning feeling. And yes same as you, I have to push a bit towards the end when I pee. I hear that's a common aspect of our condition. Also, the muscle on the inside of my left thigh has become quite rigid. Good luck with the specialist!
Tight muscles in the thighs and legs seem to also play a part. I’m relatively fit and usually very active but lockdown has made my body ache more than ever.
The perineum area is ridiculously tight all the time, it’s like having someone squeeze it and not let go. The only time it feels good is during the summer months when I’m actively walking more...and more dehydrated.
From what I’ve read anxiety and stress are the 2 biggest knock on affects from this kind of pain. Random pain, urgency, feeling like you need to pee right after you’ve been...it all adds up to a lot of secret tension and anxiety.
I’ve even made my bathroom a friendly place to try and relax me but the fear is still there.
I’m booked in for a pelvic floor physiotherapy session next Wednesday so I’m hoping he’ll at least give me some pointers and calm my anxiety a bit.
I think sometimes you just want someone to say ‘yes you have this and it’s called...’ because at least then you can address it. When it’s a bit of a mystery and changes from week to week it’s hard to understand and accept what’s going on.
This is all SO true! one problem is that there is no one name for what we have, it is more a collection of issues. When someone asks me what I have, I usually simplify it as CPP (Chronic pelvic pain). If they want to know more, then I tell them well, it's PFD, endo, adenomyosis, hypertonic pelvic floor, PN, and they are all connected.
I love what you did with your bathroom! If I had one just for me I would so do the same.
Also, how weird - I feel better in the summer too!
I think summer is better for me as I’m more active, the warm weather naturally relaxes my body and the dehydration reduces the urgency. Maybe I should move to the South of France??! Change my name to Renee and open a cafe!
Do you know what caused your CPP? Was there a defining incident or was it a build up of many things? I had surgery on my groin in 2014 and have never been right since. I often think, cutting though all muscles and nerves, must have had some impact in the long run.
If you decide to franchise the cafe I will open a branch in Barcelona!
It was definitely a build-up (recurrent UTIs since when I was 16, about 21km per day of cycling for several years), but what made everything explode was a very stressful period (work and personal life - everything happened at once, triggering it all). I do wonder, if that specific personal life stressful event hadn't happened, would I still be in this situation? I think not. But it's a what if and doesn't really help.
A friend in our same situation told me this: our bodies try their best to self repair; we have to help them doing so and believe in them
So you think stress and a heightened emotional state is a trigger? I’m certainly a big ball of anxiety and worry recently. Sadly it’s a terrible thing to try and stop. Every bad episode, ache, continuous trip to the toilet and the feeling of a never ending cycle just feeds that anxiety each day.
I think regret is a natural part of Illness. I had a simple hospital procedure 20 years ago and without knowing the risks, it eventually caused so much scar tissue to build up, I had to have it surgically removed. Since that removal operation in 2014 I’ve had countless prostate flare ups, muscle tightness and urinary urgency. My huge ‘what if’ is going back 20 years to that simple procedure and never having it. Where will I be now?
But like you say, what’s the point in that thought as it can’t change anything. I’ve decided I’m going back to see a urologist privately and next week I’m off to see the physio. I’m taking a sharpie so he can label my issue straight across my forehead for all to see! At least then people will know why cheeky silly me, is now a grump!
oh most definitely! You will see that is true for the majority of people here. Also what you say about the change in character/mood is something that I am cyclically struggling with. I hope that people around you will be as understanding as most of the ones around me were, with a couple of exceptions xx
After many years living with pelvic pain. I was diagnosed with pelvic floor dysfunction specifically levator-ani syndrome.This causes my rectum and pubirectalis muscles to "lock" in painful spasms, pain when sitting and more specifically an inability to have a normal Bowel motion. I have little to none "push" function, and little to none feeling in rectum.
My specialist womens physio has been my godsend and supports me in using trans anal irrigation daily. What really helps me is internal external vaginal trigger point manipulation. It doesn't eradicate pain but gives me short term relief from constant pain. I also get botox injections into pubirectalis muscles and find the combination of treatments works good for me.
Unfortunately due to covid all my treatment was cancelled and I'm really struggling with pain. I so hope things get back to normal soon.
I think it's finding what combination of treatments best suits each individual in helping with their symptoms, hope you find what works for you.
I do find the trigger point therapy really good, initially slight increase in discomfort for a day or two then get a lessening in spasms for a short time but it is worth it to be able to sit properly for a few days. In combination with the botox it can take about 4wks to feel the benefit and I get at least 3mths reduction in pain from spasms.I should point out that I have Dysfunctional bowel and bladder and that adds to increase in pain also.
As with any treatment each individual will have different results, I can only comment on how it affects me. Good luck with your treatment and wish you good health.
Hello, I agree with many of the comments that have been made so for. I was diagnosed with hypertonic pelvic muscles in 2008 and have been on a journey since then. I would like to make a few comments.
You are going to have rebound from PT work. Your muscles are so used to being contracted, that they will rebel against changing, causing you pain. In the beginning of my PT work, I always had rebound after a PT visit. Our muscles retain memory and don't want t change.
Yes, it can take a long, long time to "heal" the pelvic muscles. When I look back, I know that I have made substantial progress from many external and internal trigger points. My main muscle "problem" remains the puborectalis, resulting in bowel issues, sitting issues.
The other thing to remember is that even when your pelvic muscles are better, you will remain in the chronic pain loop and that is another issue to deal with.
Hypertonic muscles can cause so many problems to develop. If someone has IC, vulvodynia, etc, you are going to have hypertonic pelvic muscles.
Finding the right fit with a physical therapist can take time. I have seen many PTs over the years, with each one approaching the "problem" differently. After 12 years, I have finally found a PT whose approach is wonderful. Yes, previous PTs have helped me greatly, but I think she may get me over the hill. She has a whole-body approach to pelvic issues since everything is connected. She is finding trigger points in my hips, glutes, etc and I am making progress. She does so many things to help.
There are so many treatments to help relax your pelvic muscles besides PT. Right or wrong, I chose over the years not to use any medicines, except for one experience with injections which was a disaster. Mindfulness meditation is in my daily life. Currently, I am using an internal wand to relax the puborectalis muscle (Intimate Rose Pelvic Wand), and a massager on my external muscles (Hypervolt GO). I have done yoga and am now taking a Feldenkrais course. I have even delved into the world of CBD oil creams and suppositories and am in the process of getting my medical marijuana card. My current PT believes that the rectal branch of my pudendal nerve is irritated from the tight puborectalis muscles, so that when I have a BM the pain starts. She wants me to try the medical marijuana for that. We shall see.
Claud89, my comments were not meant to scare you but to let you know that it is a journey, with ups and downs. I have learned so much. Consider your pain "a friend" that is trying to tell you something. Information is empowerment and there are a number of books out there on pelvic pain. May I suggest one right now - A Headache in the Pelvis by Dr. David Wise. New edition is out now. I went to two of his clinics in CA at the beginning of my journey and was shocked to see so many young men from around the world there. I thought that pelvic pain was a female thing and only affected older persons. So wrong.
Good luck and let us know how youare doing over time.
Hi claud89, So, when I wake up each morning, I have no pain. In about an hour or less, I have my BM and the pain starts then or soon after and ebbs and flows in strength all day, usually subsiding in the evening before bedtime( that is a blessing). The PR muscle is intimately involved in a bowel movement. It is like a sling around the rectum and when the BM signal is activated, the muscle is supposed to relax and straigthen to allow the evaculation. If the PR muscle does not relax, you will have problems with evaculation.
So, I have hypertonicity in my pelvic muscles, particularly the PR muscles. This tightness can be anywhere in the muscle. In my case, it is at what is called the anorectal angle that has to relax and straighten for the BM. It spasms in that area when I have a BM. At the same time, it is likely that the rectal branch of the pudendal nerve is being irritated by the hypertonicity, contributing to my pain. My PR muscle and other pelvic muscles are much better, having good tone, but I still have spasming going on at the anorectal angle that I can actually feel sometimes. It is my understanding that the PN irritation can continue even after the muscle hypertonicty is "healed". Because I have been in the chronic pain loop for so long, my brain sees a BM as a threat, hence the pain.
Magnesium glycinate and acacia fiber have been life-savers. I take the magnesium before bed. Those two things keep me regular with rare constipation.
For some12 years, I have been on a pelvic healing journey, trying many different pelvic physical therapists and approaches, yoga courses and practice, mindfulness meditation courses and practice, a neuroplasticity program, etc. I meditate over an hour a day and I love it. It gets you in the relaxation response and releases tension. It, also, apparently, over time, makes the amygdala (the fear center of the brain) smaller. I am working with a fairly new pelvic PT, who has a whole-body approach (everything is connected). I recently started working with a very experienced hypnotist. I use a wand vaginally to stretch the PR muscles (Rose Pelvic Wand) and a hand massager (Hypervolt GO) externally.
I chose from the beginning not to use medicine, although I tried injections once which turned out terrible. For a while now, I have been using full spectrum CBD oil vaginally and topically (for arthritis). I just got my Ohio medical marijuana card at the reccommendation of my current PT. It will supposedly help with the arthritis inflammation and help rehabilitation my nerves. I have a lot to learn abut MM and have already had some misinformation corrrected.
I hope this has helped answer your question. Just ask if you have any more questions.
I'm sorry, over 1h a day of meditation? How did you achieve it? I can barely do 10 minutes! Thank you so much for your answer. I will definitely give magnesium and acacia a go. I feel close to your "no medicine" approach, which may not be the right approach in general, but it's most definitely right for me. I was on amytriptiline for months, and it had made me really impossible to be near to! Always on edge and aggressive, giving me really weird nightmares that didn't make me feel rested in the morning. I prefer to be in more pain, but at least be more myself.
Hey there, sorry to hear about your condition. Believe me, I have gone through it as well. The first time the pain came, even my therapist couldn't figure out how it is affecting me. I changed my doctor and decided to consult a physiotherapist(mytorontophysio.com/common-... uptown, expertise in pelvic and hip pain. He suggested I go through a proper routine of careful exercise as to not strain and make it worse. A couple of weeks of therapy and exercise with a proper and regular diet, less stress and more sleep have helped me go through the worse trauma, pain and experience of my life.
I was not able to move and walk around the house and as for the effect of COVID-19, it has been the situation of work from home, and I have relieved myself for a couple of days due to the difficulty to sit for long hours.
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