Any triggers that you can point to? Cycling, surgery, stress, something else? It’s only since reading up on CPPS have I realised just how much I was clenching my butt without even realising I was doing it, now I’m aware I have to consciously relax that area.
What do you think caused your CPPS or... - Pelvic Pain Suppo...
Pelvic Pain Support Network
For me it was butt clenching because of serious car accident and then a good friend and my dog passing away was like a child to me..so a lot of stress and I have actually started the pathways app and I'll probably do the curable app too because I think there's definitely a mind body connection at least that's what I'm going with for a nother year or so to see what happens.
I've been in pelvic pt therapy for a year and a half and now I'm down to seeing her just once when I in a while when I need it but to be honest it makes it worse at this point because I'm doing fine and then I'll get a flare afterwards so I think we're taking a break from that .
am on cyclobenzaprine muscle relaxer two 5 mg a day and 300 gabapentin at night which I'll probably up the gabapentin dose just a little bit ... I also have Tylenol suppositories I have muscle relaxer mixed with nerve medication suppositories and I also just use a simple recticare since mine is all rectal . I'm also going to try some CBD 750 mg full spectrum... My friend owns a CBD company so we'll try that I'm also breathing and doing gentle stretches ...I'm not doing any nerve blocks or Botox or any of that because when my PT did the biofeedback machine to check my muscle they looked very relaxed so now we know we think it's nerve irtation from all the clenching for years...I feel there mixed results from blocks and shots so I'm trying to stay away from them for now... I am sure I have over answered your question but I felt the need to give that info
It’s amazing how many problems stress can cause isn’t it. Do you find the meds work? I seem to read conflicting opinions on meds, people either think they just mask the issue and cause extra issues and others seem to swear by them. I’m reluctant to go down the nerve block root as others have said it’s made it worse.
For me it was a good mix of cycling (21k per day for 2 years) and stress - plus endometriosis.
Does anyone find a change in diet helps?
I tried for 2 months, but no help. The only change that I'm keeping is no caffeine at all (and it wasn't easy, I'm Italian!)
Curious if that had a positive effect?
I think so! One of the worst symptoms is the sensation of having to pee constantly, very similar to cystitis (which I have had recurrently in my life), and that has definitely decreased. Caffeine is an irritant, like nicotine, so we should avoid them both
Thank you. I recently went a week without coffee but for another reason and when I reflect back I think it may have had a positive effect. I’m not a huge coffee drinker but my one cup a day is large, very strong and very black. I’ll have to try abstaining again and pay better attention. Would be such an easy fix.
I've been told to drink less caffine but what I have found helps now is to drink lemon juice and honey in warm water every morning and since then haven't had problems peeing or flare ups of pain. I also sometimes take Ditropan prescribed by doctor to helps relax muscles and get a decent sleep at night and stop painful spasms when trying to pee.
For me a high fiber diet seems to be the key for a relaxed pelvic floor musculature. I also gave up biking which was many hours of sitting on a bike seat with pressure on the area. I miss biking but a small price tp pay for relief. I exercise still but not biking.
It seems to be a multi pronged attack is needed, managing stress, relaxation, diet, avoiding certain sports or sitting for long periods, having PT or doing stretches/exercises and possibly medication for those who get it bad.
I've been biking a lot lately as trying to make an effort to get out yet my symptoms have really flared up. I was wondering if it was in any way related?
Mine occurred after I fell.
My symptoms and complications arose after 13surgical procedures.
Reading up on CPPS and very interesting medical studies on CAPPS, found that a lot of pelvic symptoms are not in isolation. It has been found that indeed many have multiple conditions / symptoms that are all interrelated.
I have Dysfunctional bowel complicated with colitis, adhesions on bladder, Bowel abdomen and pelvis and recent diagnosis of levator-ani syndrome.
There are a lot of meds treatments that may help and no one treatment fits all. It's finding the right combination that works for the individual.
For me it's trans anal irrigation daily, meds and injections and for me the most effective is trigger point therapy with my specialist physio.
My treatments have been halted due to covid and I'm really struggling with an increase of symptoms and pain. To be honest I think a lot of us are feeling let down by a lack of support and services.
My PN was caused by surgery and I am campaigning for better awareness for this condition on Twitter and Instagram.
The lack of knowledge from GP’s and Urologists is shocking. I’ve lost count how many times I went to the doctors with issues for years and was just fobbed off with creams and pills. Even when they eventually referred me to a Urologist they didn’t once mention CPPS, potential PN issue or that physical therapy might help. They just gave me antibiotics, told me to come back in six months if no improvement or suggested putting a camera down my urethra. The last time I went to the Urologist I was referred to a pain clinic and was told they might offer a nerve block injection. Im reluctant to I’d this as I feel it’s just masking the issue and it’s only a temporary fix anyway, assuming it even works. I was referred months ago to the pain clinic and it keeps getting cancelled.
I’ve still had no official diagnosis but have now paid for private PT with a pelvic floor specialist who says my pelvic floor is really tight. So although early days now I am aware of CPPS and PN i feel I am on a better track, I am amazed no doctor or specialist has ever mentioned CPPS etc as the symptoms do seem to fit. I kind of expected a urologist to be an expert in all matters relating to that region but seems to be a condition not widely known.
It's shocking the ignorance from the UK medical community on these conditions isn't it! Utterly soul destroying. When they sit there and pull funny faces as you try to explain, then condescendingly tell you it's all in your head. I have no faith in doctors whatsoever. They aren't interested in solving anything. What do PT's get you to do when you go? Is it the blue glove treatment?
I think it may have been stress and I struggle with passing urine and moving my bowels so I strain a lot
Constant urinary infections and then I slipped on the stairs and bounced down several steps on my bottom. At the same time I was also going through an anxious time at work.
I think it was a variety of things that built up over the years - I played basketball at a high level, did lots of heavy lifting, bending, and lots of cycling as well. One day I remember feeling little pangs in the area and it slowly came on stronger and stronger. As I felt it I worried more about it and of course it got even worse. It took a few years of heavy duty suffering until I actually found out what it was. Most if not all urologists - to put it nicely - are completely uneducated about PN and unwilling to tell you they do not know whats wrong. I was out on Cipro probably 20 - 30 times by many of them - the worst drug of all - I was lucky as the side effects were OK for me. The only thing that helped was learning to relax by going to PT and taking Lyrica which calmed the nerves down. I am now in the process of working my way off the drug. Total time to get where I am today is 4 years. Long road but worth the ride to get where I am now. I finally feel good.
Most urologists are ignorant of this and unwilling to admit they don't know what you have. Idiots! Start with PT as soon as you can - you will eventually end up there anyway - see link for list: pudendalhope.info/node/16 I am sure you can find someone that is good here. Be aware its a little different than you would expect but it worked for me. Good luck!
I was a ballet dancer for 13 years, I was a cyclist in my youth, I did gymnastics and I was extremely limber. I skied, hiked strenuously and carried a 25 pound pack on my back for an entire year while back packing the world at age 23. ( staying at hostels ).
I had a home and I did all the gardening. Every fall and spring for 17 years I raked and bagged 50+ bags of leaves and carried them down a 45 degree angled driveway to our curb. Every winter I did the snow shoveling.
I had a physically active job for 30 years. I lifted boxes up off floors and put strain on my pelvis. ( unknowingly) I bent over my groin every shift to put on or take off products from shelves below waist level.
I had two laparoscopies in my 30’s, a C-section, another laparoscopy ( infertility issues ) and a tubal ligation with Filshie clips at age 41.
Ten years after the tubal ligation I felt sensations of spasms and tingling on my rectum. My doctor sent me for a colonoscopy as she thought I had IBS and tenesmus. NOT!
A titanium metal Filshie clip had migrated and landed on my rectum. It stretched my right distal pudendal nerve segment and a portion of my inferior rectal nerve. The ‘juxtaposed ‘ ligaments in my ischial spine had loosened and the nerves became stuck onto my sacrosphinous ligament. It was true PNE.
The ligaments ( sacrotuberous and sacrosphous ) acted like a vase grip every time I sat down and after Physio...every time I lay down as well. It hurt. I felt electrocuted in my rectum.
I almost died from severe sleep deprivation over a 3.5 year period. I couldn’t tolerate Gabapentin, Lyrica, Cymbalta, Tramadol, as they made me irritable, dopey, lose cognitive function, lose my sense of smell and taste and they did NOT help my nerve compression pain.
No doctor here in Canada would help me get to the US for life saving decompression surgery. I had been formally diagnosed by an expert in Minnesota and doctors here didn’t believe the diagnosis and they didn’t carry through with his nerve block recommendations. I was dismissed, gas lighted, sedated and left to die in agony,
Only after I hired a registered nurse consultant did I get the surgery in Minnesota. It saved me life and spared my sanity. I’m lucky to be alive. I can’t get justice for my negligent care.
Oh my god how awful, I’m so sorry to hear this. Are you still in pain?
Yes, I’ll have pudendal neuralgia all my life. Pain is constant 7/10 and I still require 3 meds regularly. I lost my job, my career, and I’m homeless. I was forced to sell my house because I haven’t worked in 12.5 years. It’s been brutal.
Yikes - not lots of fun for sure. There is never justice for negligent care - its also not worth the effort as well - you just move on - unfortunately its almost impossible to make changes to the system in place. you are lucky to be where you are.
I’ve been very loosely diagnosed after a couple of years of absolutely useless appointments, with everything cancelled for covid. I definitely think my problems with a) sitting too much for office work over years, and b) Chronic stress. Problems being predominantly rectal, I think I hold all my tension in pelvic floor and constantly butt clenching when stressed, and coccyx pain. It disappoints me greatly how little is known about this area - it’s been a horrible couple of years. Completely on my own with it now and working out my own ways to lesson problems, predominantly relaxation and avoiding anything that causes me stress as that will cause me a flair up.
Useless appointments and cancelled ones sounds familiar. I think I’m in the same boat as you, sitting office job and stress. As I mentioned earlier I assumed urologists were experts with all matters in that region but not one ever mentioned pelvic floor to me. I’m a bloke but we can suffer with it too, which I wasn’t aware of before. Have you made an appointment with a pelvic floor specialist, I ended up paying privately.
I have been to one privately and nhs, and both have been very unhelpful. The private one only wanted to see me back once. The nhs one kept giving me stretches which did nothing and hadn’t even examined me properly by the fourth appointment. In the process I got told by a doctor my pelvic floor was too weak on only to be told by physio was a load of rubbish and it’s too tight. Then that it could be colitis, then that I had an anal fissure, both turned out to be rubbish. So disheartened with it all! Wouldn’t want to be a man trying to get a diagnosis I can imagine that would be difficult!
I’m no expert as this is all new to me but I think the PT can take a long time before you notice any improvement and seems to be linked to relaxation. Were the physios you saw specialists in pelvic floor issues?
Yes they were. Weren’t impressed at all. The one who was going to see me long term was the nhs one but all has been stopped because of covid. Yes I think it can even take years to go. I feel like I’ve got myself of top of it with my own research etc, am pregnant now too, and it doesn’t seem to be quite as bad as it has been so hopefully some progress!
I believe that mine was a side effect of a Prostrate Arterial Embollization (PAE). The pain began to emerge about 3 months after the PAE. I suspect that as the prostrate shrank, it affected the pudendal nerve.
I have no outright evidence but it makes sense as to how this might have come about.
Endo and a uti for me.
When I was diagnosed with Pudendal Neuralgia 5 years ago, the trigger was me switching jobs. I went from working on my feet in retail to sitting in an office chair for 8 hours a day.
I don't know if the C section I had back in 1996 was a contributing factor but I'm thinking now that it was. During my second round of pelvic floor physical therapy the therapist was able to break up some adhesions underneath my c-section scar and I could feel a difference.
What country are you in? How did you find the journey from getting diagnosed to treatment?
I live in the state of Michigan in the United States.
I started having symptoms in August 2015 after taking a job in an office. By October, my symptoms had gone from mild to worse. I mentioned my symptoms to my sister and she did some research on the internet.
She found a website that mentioned pudendal neuralgia and sent me the link.
I initially went to my primary care physician, who was basically useless. She brushed it off, didn't take me seriously and acted like "what do you expect you're 50 years old now things are going to start to fall apart", which is bullshit. I practically had to beg her for a referral to a gynecologist and because all my issues were in the pelvic area she agreed.
The gynecologist did her exam poked me with a needle and confirmed that I had no feeling just above my c-section scar all the way back to my tailbone.
She was the first doctor the show genuine concern about me , and she sent me to a urologist because she thought it might be my bladder. I underwent two MRI scans two CT scans and the urologist put a camera inside of my bladder to take a look. By that time I had checked out the website and brought up pudendal neuralgia to the last specialist I was referred to. The last specialist I saw was in physical medicine and rehabilitation. They specialize in nerves among other things. That PMR doctor ordered an EMG. The EMG is what they used to diagnose the pudendal neuralgia at last.
It felt like it took a long time for me to be diagnosed but in the scheme of things it did not. From August to December of 2015 I went from having burning pain and tingling sensation when I urinated to not being able to feel the urge to urinate or defecate at all. I felt like I had been given an epidural that didn't wear off. In January of 2016 my treatment began. I improved greatly with the help of a pelvic floor physical therapist. I was not prescribed any medication although the PMR doctor mentioned Gabapentin as a possible medication to try. I had one set back in 2018 where I had to switch jobs because I wasn't making enough money. After a second round of pelvic floor therapy and my employer giving me a stand-up desk my condition has much improved. I'm not back to what I would call normal by any means but I don't live with chronic pain any longer. The numbness is almost gone but not entirely.
Sorry this post was so long.
The problems sitting too long can cause is incredible and it still baffles me that doctors we go to, and more worryingly the urologists, seem to have little to no knowledge of this.
It’s actually negligence that they haven’t researched this. It’s much more common than is believed and more women than men seem to get it.
I would have been an excellent case study and the doctors where I live don’t give two hoots about learning what happened.
Pain has become a business. All doctors do is sedate us and label us with a mental illness. It’s abuse as far as I’m concerned.
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