May is Pelvic Pain Awareness Month
In 2017, The International Pelvic Pain Society (IPPS) designated May as Pelvic Pain Awareness month to raise public recognition for chronic pelvic pain (CPP).
I saw many different specialists over the course of 15 years and not once did I hear a diagnosis of chronic pelvic pain from any doctor. I heard chronic urinary tract infections, chronic yeast infections, IBS, Vulvodynia, Lichen Sclerosus, Vaginismus, Vestibulitis, Dyspareunia and Dysmenorrhea but never Chronic Pelvic Pain.
Was it because I was young, that they didn’t want to label it as chronic because there was still hope? Maybe, but I could go in circles asking what could have or should have been done to avoid where I am today but I know that isn’t going to get me anywhere.
That’s why I’m happy you came across this ‘May is Pelvic Pain Awareness month’ post.
Because maybe, just maybe, the purpose for my pain is to educate and help you advocate for yourself to find the care you need to break the chronic pain cycle and live a pain free (or less painful) life.
So what is Chronic Pelvic Pain?
Chronic Pelvic Pain affects up to 26% of women and up to 15% of men at some point in their lives and can have a significant impact on quality of life and disability. Pelvic health, and pelvic pain in particular, has an unfortunate ignorance among the medical community as being challenging and difficult to treat. Linda G. Griffith a professor of biological and mechanical engineering at M.I.T., and its director of the Center for Gynepathology Research says it best in this article in regards to endometriosis and pelvic pain, “It falls into the abyss of “women’s diseases” (overlooked), diseases that don’t kill you (unimportant) and menstrual problems (taboo)”. Because of this, many of us are under-diagnosed, dismissed or remain symptomatic for months to years, before effective therapies are tried.
CPP in women
CPP in men
The root cause of pain in CPP can be gynaecological, urological, gastrointestinal, musculoskeletal, psychoneurologic, or in most cases, a combination of those. There are many conditions that play a role in developing chronic pelvic pain but the 5 conditions that are most prevalent in CPP are Endometriosis, Interstitial Cystitis/Bladder Pain Syndrome, adhesions, Prostatitis and Irritable Bowel Syndrome.
When someone has lived with Chronic Pelvic Pain for many years, they may notice constant muscle tension and painful symptoms in other organs. CPP sufferers can feel lasting changes in their muscles that affect their bladder and their bowels. Patients also may notice pain involving the upper and lower back and legs due to muscle tightness and possible nerve involvement.
Why do we feel this pain?
Pain signals are sent down our spine to alert us to dangers in our environment in order to protect ourselves. Once a person has long-lasting pain, the spinal cord gate/pathway may be damaged. This may cause the gate to remain open even after the injured tissue is healed. When this happens, the pain remains in spite of treating the original cause.
Over time as these nerve pathways change, it becomes much easier for our brains to perceive anything as a threat and we can become stuck in a cycle of chronic pain.
How does CPP impact your pelvic floor muscles?
Muscles tighten and tense up when they are injured or when we are in pain. This is a normal response in our bodies to prevent more damage from occurring. Our pelvic floor muscles tighten up too when there is something painful in the pelvis. Muscles aren’t meant to be tight all the time and after a while, they start hurting and adding to the already existent pelvic pain. Just like a sore neck from a stressful day at work, our pelvic floors hold our tension and can hurt as well.
We are designed to move, so laying down due to pain can actually make the pain even worse. Muscles that become even tighter can spasm, causing sudden stabbing or cramping. These spasms can mimic new painful symptoms, which leads to so many of us thinking something is terribly wrong when we are actually in no immediate danger.
↯ Short-term vs. Long-term pain↯
How to manage your pain
In many cases, Chronic Pelvic Pain is not caused by one health problem but by a multitude of problems that are impacting each other. This means that often there is not one single medication, treatment or therapy for CPP.
It is practically impossible to tell how much each pain generator or condition adds to the whole problem due to the close proximity of organs, tissues and nerves. In fact, whatever caused your pain in the first place may become only a simple factor while the chronic pain is caused by secondary factors, like Central Sensitization.
When treating CPP, all factors and/or conditions must be treated, not just the ones that can seem like the most important. Treatment requires a holistic approach addressing physical, behavioural, psychological, and sexual factors. We must not lose sight of the fact that with CPP, a biopsychosocial approach is needed for best outcomes.
It is important to remember that some pelvic pain can never be completely cured and instead, you and your healthcare team’s goal should be to maximize quality of life.
You need to be realistic of your expectations and hopes for treatment. This may involve learning ways to build resilience and how to cope with pain flare-ups.
Treatments + Therapies
This is post NOT intended to be a substitute for medical care nor medical advice. All information on this site is for general information purposes only. This site is NOT offering medical advice & by viewing this site you understand that your medical choices are your responsibility.
Pelvic Floor Physiotherapy can help. With CPP, the muscles of the pelvic floor can become hypersensitive and tight affecting bladder, bowel and sexual function. Treatment can include pain education, manual release of the pelvic floor in a non-painful way, and breathing techniques.
→ Find a Pelvic PT
Mental health is a critical component of care when you live with chronic pelvic pain, regardless of the underlying cause.The psychological side effects can be as debilitating as the pain itself. This is what makes CPP such a complex condition. We must seek help medically and/or from our support systems. It is not shameful to speak to someone who can safely support you. A therapist is a great place to start.
→ Crisis Lines
Gabapentin, Pregabalin (Lyrica): Evidence supports use for neuropathic pain.
Gabapentin + Amitriptyline used together: Evidence supports its use for neuropathic pain. Small study in women with chronic pelvic pain showed combination was more effective than amitriptyline alone.
Nonsteroidal anti-inflammatory drugs (Aleve, Advil): Benefits inflammation and dysmenorrhea (painful menstrual cramps).
Hormonal (Oral contraceptives, gonadotropin-releasing hormone (GnRH) agonists): Evidence of benefit for cyclic pain in women but limited evidence for noncyclic pelvic pain.
Tricyclic Antidepressants (Amitriptyline): Evidence supports use for neuropathic pain.
Opioids should only be considered for long-term management of pain when other options have been exhausted. Referral to a pain management specialist should be considered.
You can use alternative medicine alone or combined with medications and they can be a powerful tool in learning to live with chronic pain.
Examples of alternative medicine for chronic pain can include massage therapy, magnetic therapy, Reiki, accupuncture, herbal medicine, and mindfulness.
Chronic Pelvic Pain needs to be taken more seriously by doctors and...
May Pelvic Pain awareness month is a great time to start the conversation with your doctor!
Blog post: Becoming your own medical advocate
The longer it takes to get to a correct diagnosis, the longer it takes to believe someone’s pain, the longer it will take them to recover and have a good quality of life.
When pelvic pain becomes chronic, our immune, endocrine and sympathetic nervous systems all get switched on to help us cope. The entire body joins in on the party. This reaction may help with recovery in short term pain, but when chronic pain is added to the equation, these systems don’t function well and neither do we. Our energy levels, sleep, bowels, concentration, immune system, are all impacted and life becomes even more challenging.
The best thing a doctor can do for someone with repetitive pelvic pain symptoms at early onset, would be to direct them to the correct specialist and treatment plan (ie: Pelvic PT) to decrease the chance of them developing chronic pelvic pain and the additional unpleasant symptoms that go a long with it.
If you live with Chronic Pelvic Pain, what has been the most helpful in managing your flares?
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International Pelvic Pain Society. (2019, Aug 4). Basic Chronic Pelvic Pain. Retrieved from: https://www.pelvicpain.org/IPPS/Patients/Patient_Handouts/IPPS/Content/Professional/Patient_Handouts.aspx?hkey=cffd598e-5453-4b3f-9170-457c59266b50. Accessed Mar 20, 2020.
Linda M. Speer, MD; Saudia Mushkabar, MD; and Tara Erbele, MD, University of Toledo College of Medicine and Life Sciences, Toledo, Ohio Am Fam Physician. 2016 Mar 1;93(5):380-387.
Alebtekin, Ahangari, BSc. PT. Prevalence of Chronic Pelvic Pain Among Women: An Updated Review. Pain Physician 2014; 17:E141-E147. https://www.painphysicianjournal.com/current/pdf?article=MjA2NQ%3D%3D&journal=81. Accessed Mar 20, 2020.
Children (Basel). 2016 Dec; 3(4): Published online 2016 Dec 10. Chronic Pain in Children and Adolescents: Diagnosis and Treatment of Primary Pain Disorders in Head, Abdomen, Muscles and Joints. Stefan J. Friedrichsdorf, James Giordano, Kavita Desai Dakoji, Andrew Warmuth, Cyndee Daughtry, and Craig A. Schulz, Carl L. von Baeyer.