The experience of the symptoms of muscle based pelvic pain explained

It is one thing to list symptoms of pelvic pain and dysfunction.  The real experience of these symptoms is not captured by this simple listing.  Below we attempt to describe more fully the symptoms and the experience of having to chronically deal with them.

Urinary frequency and Urinary urgency  (need to urinate too often andhard to hold urination once urge occurs) 

  • For patients, urinary frequency can range from  being annoying to debilitating
  • There is typically a feeling of something always nagging in your bladder/urethra/genitals and  typically after someone urinates, they don’t feel ‘emptied’ and have the feeling of having to urinate again  even though there is no urine there
  • The normal relaxation you feel after urination when you have no pelvic pain is not there
  • Always a nagging feeling,  and sometimes patients push on the  bladder to see if it there is any reason to urinate
  • Frequency/urgency means you have to always be near a bathroom and sometimes can hardly hold in the urge to urinate
  • If you are in a movie theatre, sports event etc. you usually look to sit in the aisle seat because when the urge comes, you have to go
  • Some patients feel that  their  life revolves around being near a toilet
  • Urinary urgency and frequency can deprive people of sleep because of how often they wake up during the night

Dysuria (pain or burning during urination)

  • Burning or pain with urination is always disconcerting
  • It is often associated with pelvic floor dysfunction
  • When the chronic spasm and myofascial contraction of the pelvic muscles is resolved, in many of our patients,  dysuria is also resolved
  • Sometimes  people feel no pain during urination  but only after
  • Dysuria can  be so painful that urination becomes a large ordeal and sets off further pain

Nocturia (frequent urination at night)

  • Often this is a major problem in that someone’s sleep is so disturbed they are exhausted all the time
  • Exhaustion from sleep deprivation  tends to feed into the cycle of tension, pain protective guarding and anxiety

Reduced urinary stream  and hesitancy of urination

  • In men this is an important symptom to medically evaluate as to  whether the source of the reduced stream from prostate enlargement or other other issues
  • Hesitancy of initiating urination can be worsened when urine is held in longer than comfortable (because we speculate the tightening of the muscles to hold in the urine puts the muscles in a kind of spasm that is slow to release upon urination)
  • A contributing symptom to low self-esteem and hypochondriasis especially in younger men
  • When urinary symptoms are muscular in origin, after loosening the pelvic floor, the flow of urine can improve
  • Some people with muscle based pelvic pain have to wait for a while to get a stream of urine going

Perineal pain (pain between the anus and scrotum in men or anus and vagina in women)

  • Perineum  is one of the most common sites of pelvic pain, is intimate, can hurt 24/7 and can be very distressing
  • The perineum is the place where most muscles of the pelvic floor attach and therefore has many sources of referred pain
  • Perineum is often the site of bicycle riding pain
  • Perineum pain can be made worse by sitting or standing
  • In a 2009 Stanford study of our work published in the  Journal of Urology, it was documented that 79% of subjects complained of pain in the perineum
  • We documented key abdominal and pelvic muscles that all refer pain to the perineum (rectus abdominus, adductor magnus, and coccygeus)
  • The perineum and the anal sphincter is one of the parts of the body where the patients feel the feeling of  “sitting on a golf ball”
  • Perineal pain is intimate pain and when it doesn’t stop, it is very distressing

In men, discomfort during or after ejaculation

  • Increased discomfort hours or the day after sexual activity is common
  • Our explanation about why there is often an increase in discomfort during or after sexual activity in men and women with chronic pelvic pain syndromes is as follows:
    • Orgasm causes strong contractions of the pelvic, prostate and seminal vesicle muscles lasting about once a second during orgasm.
    • There is a significant increase in nervous system arousal during sexual activity.
    • The pleasure spasm of orgasm in the form of the increased series of contractions during orgasm will tighten the pelvic muscles further.
    • This increased tightening temporarily contracts an already contracted area which doesn’t relax well and it tends to throw the patient further above the symptom threshold
    • When our patients learn to release the muscles inside the pelvic floor, they usually can feel this increased muscle contraction
    • After a certain time frame (from hours to days), the pelvic muscles relax and return to their baseline level, the normal tightened state of the pelvic floor reasserts itself (which is back to some degree of pain or discomfort when a person has chronic pelvic pain syndrome).
    • For this reason we do not recommend increasing sexual activity  (as has often been suggested by physicians our male patients have seen) when a person has an increase in symptoms after sex

Dyspareunia (pain with sexual activity in women)

  • Sexual activity is painful either during or afterward
  • Pain is felt on the outside of the vagina, inside or both
  • Pelvic examination in which trigger points are palpated can often recreate symptoms of pain during sex

Sitting pain

  • Sitting can trigger or exacerbate discomfort/pain/symptoms 
  • Sitting is one of the great sufferings and scares in  pelvic pain and makes all aspects of normal life difficult
  • Sitting pain makes one acutely aware of how sitting is the center of social and work life
  • Sitting pain usually starts out milder at the morning but after sitting through the day, there is increased discomfort that can last into the night
  • Patients often are looking for the padded seats in a restaurant because sitting is so uncomfortable
  • Difficult to sit with friends or family and socialize
  • Difficult to  fly or drive for any distance without pain
  • Sometimes patients have to go on disability because they can’t work because their job is a sitting job
  • Sitting pain is one of the symptoms that raises the fear that you might not be able to work or function 
  • Some patients go on disability because they can’t sit
  • Most endure the pain and deal with the buildup of pain during the day

Genital pain (penile pain in men and vaginal pain in women)

  • In men, pain at the tip and shaft of the penis is a common symptom
  • In men, penile pain is sometimes accompanied with a redness at the tip
  • In , sometimes there is an irritation on the tip so that rubbing against underwear is uncomfortable
  • In women, pain inside the vagina, on one side or another is common
  • In women, sometimes vulvar pain accompanies pelvic pain
  • Genital pain usually referred from the anterior levator ani and one of the easier symptoms to resolve

In men, testicle pain or discomfort

  • Testicular pain/discomfort is particularly miserable and scary
  • Pain/discomfort is felt in one testicle or another
  • Sometimes the cremaster muscles pull up the testicles or penis especially when the anal sphincter is sore and this can be very disconcerting
  • Patients have come to see us who had their testicle removed and their pain remained unchanged

Suprapubic pain (pain above the pubic bone)

  • It is common symptom
  • Suprapubic pain is common with patients who have urinary frequency, urgency, hesitancy and anterior symptoms
  • Sometimes pressing on this area can refer into the anorectal (anus and rectal) area and sometimes bladder pain is experienced here
  • Pain can be on one side or another or in the middle

Coccyx (tailbone) pain or Coccygodynia/coccydynia

  • Tailbone pain is common
  • It is typically referred pain from the pelvic floor and not from the tailbone itself
  • Patients`  1 who had their tailbone removed typically felt no relief
  • Coccyx pain is often related to post bowel movement pain

Low back pain (on one side or both)

  • This is common and often confuses patients and practitioners because the symptoms are referred from the muscles of the pelvic floor, not the low back
  • Discomfort can be on one side or another or migrate from one side to another

Groin pain (on one side or both)

  • Groin pain often is confused with a hernia
  • We have seen patients who have had hernia repair for their pain  that did not resolve their groin pain

Discomfort or relief after a bowel movement

  • Relief after a bowel movement occurs when the tight pelvic muscles relax
  • Discomfort after a bowel movement is a very disconcerting experience because when people have post bowel movement pain,  symptoms often begin more strongly for the rest of the day
  • Little is written about this symptom when it occurs in the absence of hemorrhoids or anal fissures, but in our experience it is common
  • The mechanism of defecation typically involves the filling up of the rectum with stool, which then sends a signal for the internal anal sphincter and puborectalis muscle to relax and triggers the experience of urgency to have a bowel movement
  • Once the stool passes through the relaxed anal sphincter and out of the body, the internal anal sphincter reflexively closes.
  • When someone has pelvic pain and exacerbation of symptoms after a bowel movement, we propose that the internal anal sphincter tends to ‘over close.’
  • That is, it tightens up more than it was tight before the bowel movement and sometimes appears to go into a kind of painful spasm
  • Post bowel movement pain appears to occur less frequently when someone is relaxed and not hurried, and whatever contributes to a more relaxed state during a visit to the bathroom may reduce this symptom
  • Resolving post bowel movement pain in our patients tends to occur as their entire pelvic muscle tension releases 

Symptoms can migrate or change location

  • It is not uncommon for symptoms to change location or ‘migrate’
  • Sometimes pain or sensation will appear in one part of the pelvis or abdomen and then the next day it is elsewhere

Heat (hot bath or shower, heating pad) helps temporarily

  • Hot water or heat often helps temporarily
  • Cold weather flares up symptoms in some patients

Benzodiazepines temporarily reduce symptoms when first used

  • The family of drugs called benzodiazepines can often relieve symptoms for a few hours and are helpful when used skillfully
  • Benzodiazepines are addictive and when used regularly for pelvic pain, they tend to lose their effectiveness when used regularly over time and can cause addiction
  • Benzodiazepines typically make the user tired and should not be used when driving or having to be alert

Reduced libido (reduced interest in sex)

  • Reduced interest in sex is common with pelvic pain
  • In pelvic muscle related pelvic pain, there is typically no pathology of the physical structures involved in sexually activity
  • Our view is that reduced libido is a mix of anxiety, reduced self-esteem and pelvic pain which all mitigate against sexual  arousal and sexual interest and resolution of pain and dysfunction of the pelvic muscles usually resolves reduced libido

Anxiety about having sex and ‘erectile dysfunction’ in men

  • Because sex and be painful or painful  afterward, there is often a conditioned withdrawal from having sex to avoid pain
  • This anxiety and the often resultant difficult in men can result in difficulty in maintaining an erection which adds to relationship difficulties, courting difficulties particularly in younger patients,
  • Anxiety with having sex, in our view is the major reason for performance anxiety and what is ‘medicalized’ as erectile dysfunction
  • In our experience when pain goes away, so does the anxiety and what is called erectile dysfunction connected to it 

Anxiety and catastrophic thinking

  • The scariest part of pelvic pain is the catastrophic thought that it will never go away
  • Most patients attention is on their pain most of the time at some level and this focus is most disconcerting
  • It is a focus that distract your attention away from your life and with many patients, paints an unacceptable future

Depression

  • When you are in the throes of pelvic pain, the thought that it will never go away prompts depression in many patients
  • Where the doctors cannot help you and you see no light at the end of the tunnel, depression or and anxious depression is the rule rather than the except
  • Depression involves the feeling of helplessness about doing anything about what you feel is critically wrong in your life

Social withdrawal and difficulty in intimate relations

  • The withdrawal that comes from chronic pain and it distracting any enjoyment of the moment
  • There is a major toll that chronic pelvic pain takes on relationships on partners of those in pain
  • The difficult issues that arise from partners involve the problems arising from the patient’s  withdrawal from sex, withdrawal from going out and doing things with others, planning trips, parenting, socializing and doing the things of partnership or marriage
  • In the pelvic pain patient’s suffering and preoccupation with pain, the much needed experience of a partner for the other to be present is often lost

Impairment of self-esteem

  • Self-esteem almost always goes down
  • Men and women with chronic pelvic pain almost always worry that no one will want to be with them

Sleep disturbance

  • Sleep disturbance is very common
  • Patients either to wake up to urinate or because of pain and anxiety
  • Patients typically wake up anxious
  • We wrote a paper about precipitous rise in cortisol in the morning  amongst pelvic pain patients
  • Many patients wake up anxious, wondering if the pain has gone, disappointed every day that it isn’t

Stress increases pain

  • ordinary stresses as well as extraordinary stress tend to increase symptoms
  • when stress has triggered pelvic pain, the stress tends to triggers the tension-anxiety-pain-protective guarding cycle that continues after the stress has gone

Helplessness and hopelessness

  • Helplessness and hopelessness is the real suffering with chronic pelvic pain
  • Helplessness comes from a patient’s inability to stop pain/discomfort that  is draining and scary
  • The hopelessness and helplessness of pelvic pain steals away your ability to rest or enjoy anything
  • Hopelessness in pelvic pain patients arises when they can’t see anything on the horizon anything that might help them