The Empowered Patient’s Guide to Pelvic Pain

Constant, unending pain—there, in the one part of your body you least want to talk about. Living with pelvic pain is bad enough on its own. But with this condition, it’s never just about the pain. It’s about the stigma, feeling ignored, feeling helpless, the ripple effect on your relationships and your career. It’s a pain that, for too many people, is simply not taken seriously enough by doctors. It’s also not well understood. 

Chronic Pelvic Pain (CPP) isn't something a glass of wine can fix. All too often doctors, friends and well-meaning family members try to normalize feminine pain.CPP is a complex condition with pain that is real. Take the time to help them understand what you're going through.

Research on pelvic pain is woefully underfunded. The location of this pain is anatomically complex, with sometimes intersecting ligaments, muscles, nerves, and organs. And it’s wrapped up in taboo. As a culture, we don’t make it easy to talk about menstruation, painful sex, and sexual dysfunction.

From the onset of symptoms, it often takes about a decade to get a diagnosis. “I still have people come to me who have been in pain for many, many years, and have been ignored,” says Kathy Huang, MD, assistant professor of obstetrics and gynecology at NYU Langone Health, who specializes in pelvic pain. “I think that’s part of the issue. I feel like there are a lot of women who are in pain who may have been told at one point in time that having pain with your period is to be expected.”

In general, 70% of the people impacted by chronic pain are women, and women suffer longer than men do. And yet, 80% of the pain studies are conducted on male mice or human men. Chronic pelvic pain (CPP) in particular affects 1 out of 7 women, compared with 1 out of 10 men.

Chronic pelvic pain may be common especially for women, but it's definitely not normal, and it’s not something you should have to live with—or wait a decade to get treated. As we learn more about this condition, we’re getting smarter about how we diagnose it and treat it.

Increasingly, doctors are taking a more holistic approach. The International Association for the Study of Pain recently updated their definition of pain:  “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”

So key to finding answers about, and relief for, your condition is taking in the big picture, being treated as a whole human being, with a complex psychology and emotional life that’s just as important as your physical health.

THE BASICS

So, What Exactly is Chronic Pelvic Pain?

CPP affects up to 16% of women in the US. Largely because of the stigma, and because pain in this area has been normalized particularly for women, only about an estimated third of affected women seek help. Meanwhile, approximately 50% of cases go undiagnosed.

What complicates CPP is that it usually presents with comorbid conditions like endometriosis, interstitial cystitis (painful bladder syndrome), and irritable bowel syndrome— sometimes a combination of conditions. The pain may be ongoing or intermittent, triggered after activities like sexual intercourse or prolonged sitting, or it can be linked with menstrual cycles.

Pelvic Pain for Men is Different

About 10% of men experience pelvic pain at some point in their lives. It could be more; half of men experience prostatitis at some point in their lives. Pelvic pain often gets misdiagnosed as prostatitis, particularly chronic nonbacterial prostatitis. There’s a pattern to it. Men take medication that gives them temporary relief, but then it comes roaring back. It’s also often misdiagnosed as a prostate problem.

For many men, pelvic pain is a response to stress. It’s seen in otherwise healthy, athletic men in their 20s and 30s who happen to be under a lot of pressure.

Pelvic pain in women presents often with multiple comorbidities that also require treatment. In men, the diagnosis and treatment is different. Doctors use a classification system for the symptoms called UPOINT, for urinary, psychological, organ-specific, infection, neurologic-systemic, tenderness. They rule out other conditions before diagnosing pelvic pain.

Men are frequently treated with the Wise-Anderson Protocol, which helps them relax chronically tightened muscles in and around the pelvis. It involves relaxation therapy, pain mapping, and stretching internal points with a wand that is inserted anally. The treatment was approved by the FDA in 2012.

Chronic Pelvic Pain Symptoms and What It Feels Like

Pelvic pain occurs anywhere below your navel and within your pelvic cavity. It is classified as chronic if it persists longer than 3 months (6 months for some doctors). Beyond that, there is a wide range of ways it can feel:

●     Sharp, stabbing pain

●     A dull ache

●     Burning sensation

●     Pressure or heaviness in the area

Additional symptoms may include:

●     Depression

●     A sense of powerlessness and overwhelm

●     Fatigue

●     Anxiety

●     Difficulty/pain/discomfort urinating and/or voiding bowels

●     Lower back ache

●     Disrupted sleep

Causes of Pelvic Pain: The 7 Triggers

The most common causes of CPP are what physiotherapist and women’s health specialist Michelle Lyons calls the “evil triplets of pelvic pain,” namely endometriosis, interstitial cystitis, and pudendal neuralgia (damaged or irritated nerve in the pelvis). But in general, there are seven main types of CPP etiologies:

#1. Gynecological: endometriosis, pelvic inflammatory disease, scarring from a sexually transmitted infection, ovarian remnant (from surgical removal of sex organs), fibroids (non-cancerous uterine growths)

#2. Gastroenterological: Irritable bowel disease or syndrome, celiac disease, hernia

#3. Musculoskeletal: fibromyalgia, pelvic floor tension or dysfunction, inflammation of the pubic joint, abdominal wall pain, tailbone pain, piriformis pain, and other muscle pain 

#4. Urological: interstitial cystitis, chronic kidney stone disease, urethral syndrome, bladder cancer and radiation cystitis

#5. Neurological: injury or damage to the nerves running through the pelvis, especially those connected to the lower lumbar and psoas muscles, pudendal neuralgia, spinal cord injury

#6. Vascular: Varicose veins forming on the vulva or around the uterus and ovaries causing pelvic congestion syndrome

#7. Psychological: History of trauma/sexual abuse resulting in functional somatic pain syndrome; also the emotional distress that comes from living with chronic pain, PTSD, depression

BUT WAIT, CPP GETS MORE COMPLICATED 

As with other forms of chronic pain, pelvic pain can be intractably difficult to diagnose and treat. Addressing the pain itself is usually not enough; you’ll need to find the underlying cause of the pain, and treat that condition.

But with chronic pelvic pain, there are often multiple, overlapping conditions. Sometimes endometriosis is misdiagnosed as IBS because it causes digestive issues known as “endo belly.” Many of the conditions that cause CPP don’t have straightforward, reliable diagnostic tests. Laparoscopy, frequently used for diagnosis, ends in inconclusive results 40% of the time, and may result in bleeding and infection, among other things. 

CPP can be a result of central sensitization, a condition of the nervous system in which persistent sensations cause your nervous system to become highly reactive. This lowers the threshold for what causes pain. It’s a heightened sensitivity to pain. And no, it’s not “all in your head.” It’s more of a rewiring of your nervous system.

A similar condition called complex regional pain syndrome, or Type 1 CRPs (formerly known as reflex dystrophy) can occur when tissues are damaged but with no lasting nerve damage. It’s activated by an injury, but never gets deactivated, causing a lot of pain and swelling at the site. Pain can spread beyond the injury site. And it’s one of those things that doesn’t get diagnosed until you’ve had it for months.

Overall, the pelvic region is very psychologically sensitive, says Lyons. “Your brain and your pelvic floor are in constant conversation with each other.” So if you’re feeling pain, that can feel like a threat, which triggers fear around similar experiences. You anticipate more pain, not just in the same place but possibly in other organs or muscles.

Getting A Dagnosis

Diagnosing chronic pelvic pain itself is largely a matter of your medical history; you will be all too aware if you’ve experienced pain in your pelvis for more than three months. But in order to create a treatment plan you and your doctors will have to do some detective work to find out which conditions or injuries are causing that pain. This involves ruling out what’s not causing your pain as well.

These are some of the ways pain-causing conditions are diagnosed:

●     Endometriosis: menstruation history, pelvic exam, ultrasound, MRI, laparoscopy

●     Interstitial cystitis: medical history, pelvic exam, urine test, cystoscopy, biopsy

●     Pudendal neuralgia: pelvic exam, MRI

●     IBS: no definitive test; doctors will evaluate your medical history against certain criteria; they will also see if they can rule out celiac disease

●     Complex regional pain syndrome: no single test for it; doctors may do a series of tests including an MRI, a thermography test (for signs of differing blood flow), or x-rays

It’s often the case that pelvic pain is caused by a combination of conditions. “There’s a lot of cross talk between the different systems in your body,” Lyons says, especially among those placed very close together, as is the case inside the pelvis. This creates a kind of synergy where, when one organ develops a pathology, another one nearby develops another pathology.

Pain Mapping can be very helpful in diagnosing pelvic pain issues. Some doctors consider it as a less-invasive alternative to laparoscopy, others more as a supplemental test when laparoscopy results are inconclusive. This can be done via micro-laparoscopy with a conscious patient who is probed at various points throughout the pelvic cavity and is asked to rate the pain on a scale. Rather than trying to detect the pathology visually, it’s detected through physical sensation.

Depending on where the pain is located, this can also be done externally, for example, pressing points around the tissue at the opening of the vagina with a cotton-tipped swab (popularly known as the Q-tip Test). This helps determine if the pain is due to tense muscles, neurological sensitivity, or a hormonal issue.

The Latest on What We Know About Chronic Pelvic Pain

While we still need much more research on chronic pelvic pain, the latest findings suggest that in order to understand CPP, you’ll need to look outside the pelvis. This is a condition that affects multiple systems—like your gut health and your sleep quality.

And the more variables you can control—like your sleep hygiene and your diet— the better you’ll feel. The research increasingly points to the mind-body connection with regard to pain, and the importance of psychotherapy and mindfulness.

WHAT ELSE TO EXPECT WHEN LIVING WITH CHRONIC PELVIC PAIN

It’s never just about the pain. CPP can have a ripple effect into many other aspects of your life. Here are just a few of the related symptoms and lifestyle disruptions.

●     Insomnia and sleep disturbances

●     Sexual dysfunction, loss of libido

●     Strained relationships with partners, or difficulty building relationships

●     Fatigue, tiring easily

●     Difficulty sitting or standing for long periods

●     Slowed-down bowel movements

●     Difficulty keeping a job or maintaining a career because of fatigue, frequent sick leave, and physical impairments

●     Limitations on social activities and therefore difficulty maintaining friendships

●     Overall lowered quality of life

There is a strong correlation between CPP and psychosocial factors and mental disorders, including:

●     Feelings of isolation

●     Depression, anxiety, stress

●     Post traumatic stress disorder

HOW TO TREAT CHRONIC PELVIC PAIN

The most important thing you need to know about treating chronic pelvic pain is that you need a team. Often this can look like your primary care physician, a gynecologist, a physical therapist, a psychologist, and a few other specialists. For example, if you suspect IBS is involved, a gastroenterologist; if you suspect endometriosis, a gynecologist.

Another important thing to keep in mind is that healing can be a complex journey. It will most likely be an ongoing process of trial and error. What works for one person isn’t necessarily going to work for another person. This doesn’t mean you will never find relief; you can. It’s that finding relief may take some experimenting, some risk-taking, and you may have to adjust your treatment over time.

The key to treating your pain is treating the underlying causes, whether that’s endometriosis, bladder issues, or IBS. “There’s no one right answer for any patient,” says Dr. Huang. Ideally, your medical team will put together a highly individualized treatment plan based on your concerns and goals. She and Lyons, though from two different practices and two different countries (Lyons is based in Ireland), both advocate for a holistic approach to treatment—treating the whole human being, not just the condition.

“What we’re trying to do is really move away from just a very biomedical, biomechanical tissue-focused approach, to a biopsychosocial approach where we’re looking at the whole person,” says Lyons. “Stress, sleep, exercise, all of those things should go together into a multimodal treatment approach.”

Anti-inflammatory Diet

What does food have to do with pain? Certain foods can cause inflammation, which in turn can trigger flare ups. An anti-inflammatory diet based on whole foods, mostly plants can reverse that. It can also help create a healthy gut microbiome, which in turn will improve your mental health. You may want to cut back (or eliminate) dairy and gluten. If that sounds like a big leap for you, see if you can at least cut back on fast food and highly-processed convenience foods.

People who also have IBS can benefit from what’s called the Low FODMAP diet. This stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. All of that refers to short-chain carbohydrates (sugars) that cause some people digestive distress.

Dr. Huang notes that medical training doesn’t include nutritional training, which she sees as a shortcoming. So even if your doctor doesn’t bring it up, nutrition plays an important role in your recovery.

Exercise

High-intensity (HIIT) workouts can be great for a lot of bodies; they may not be so helpful for yours, though. Instead, choose movement activities that help you downregulate your nervous system, like walking and yoga. They can also help create length in your pelvic muscles.

Myofascial Release

Using a therawand or your fingers for some myofascial release of the pelvic muscles can help unwind the tension that causes pain. This video demonstrates how.

Getting Better Sleep

It’s hard to sleep when you’re in pain, and that’s not always something you can control. That said, getting restorative sleep can help reduce pain. And there are many things you can do to improve your sleep quality.

●     Keep a regular sleep routine: wake and go to bed at the same time every day

●     Avoid naps in the afternoon

●     Avoid caffeine in the afternoon and alcohol in the evening

●     Get some light exercise or movement 5 days a week; but avoid working out 2 to 3 hours before bed

●     Expose your eyes to sunlight during the day

●     Use your bed only for sleep and sex; avoid working in your bedroom

●     Keep your bedroom cool and dark; use an eye mask if you can’t black light from your window

●     A warm bath or shower right before bed can help relax you

●     Avoid electronics an hour before bed

“If someone isn't asking you about your sleep, you're missing a big chunk of how pain is going to be managed,” says Lyons.

TENS Machines

Transcutaneous electrical nerve stimulation instruments (TENS) were introduced in the 1990s, but in the wake of the opioid crisis there has been a resurgence of research showing they can be just as effective as opioids for managing the pain of endometriosis. “Something as simple as a little unit like this can be part of the toolbox,” says Lyons. “It's not the only thing, but it can really be a game changer because it's something that a person can do for themselves.” TENS machines cost around $50 and can give you a window of relief for 20 or 30 minutes, so you can move your body.

Physical Therapy

One of the most effective treatments for pelvic pain, regardless of its cause, is physical therapy. Research shows pelvic floor therapy in particular can reduce the amount of pain reliever you need and help with a range of bladder issues.

This is not about doing more kegel exercises. (That may actually be the last thing you need.) People with pelvic pain need to learn how to do the opposite -- to relax their pelvic floor muscles, and then to coordinate pelvic floor movements with breath.

The objective, says Lyons, who trains other medical professionals in pelvic floor physical therapy, is “using the breath as a tool to train the nervous system to let go of the pelvic muscles, and then working on rebuilding coordination in conjunction with the abdominals and the hips.” Rather than tightening and clenching, it’s about creating length in the pelvis and core. An unraveling.

Physical therapy also introduces an opportunity to take a more holistic approach to your treatment, incorporating the emotional and mental aspects of healing.

Treatments like physical therapy and the TENS machine help put the healing in your own hands. They’re an antidote to the feelings of helplessness and overwhelm you may be feeling. “So all of these things really enable us to go from being passive recipients to having some agency and self advocacy so we can become active participants in our own recovery,” says Lyons.

Rhizotomy/radiofrequency Ablations

This is a non-invasive, nonsurgical procedure that uses heat to destroy nerves that carry pain to the brain. This is another effective pain-management alternative to opioids that avoids those associated side effects and potential for addiction.

Alternative and Complementary Therapies

Acupressure/Acupuncture has been used in China to treat pelvic pain for over 2,000 years. It helps reduce pain and inflammation by stimulating your body’s natural pain relievers and reducing inflammatory hormones.

Biofeedback uses electronic and other instruments to help you learn to control some of your body functions. With practice you can learn to stop using unhelpful muscles and use more helpful ones instead.

CBD (especially with small amounts of THC) has been shown to help relieve anxiety and reduce inflammation. It may reduce or inhibit chronic pain. But more research is needed to better understand the role it can pay in managing pelvic pain.

Meditation and mindfulness are practices that help support cognitive behavioral therapy. It also has the power to change how your brain processes pain, helping to reduce its intensity. “I’m a huge proponent of meditation and body scans as a way to dissociate with the bodily sensation of pain,” says Dr. Huang.

Medication

If over-the-counter pain relievers like NSAIDS are not effective, your doctor may prescribe muscle relaxants and other stronger pain medications.

Hormonal treatments can be helpful if pain appears to be linked with your menstrual cycle. However, Dr. Huang is concerned that the pill is too often used to mask pain, leaving the underlying causes untreated. Not to mention, this doesn’t help people who are also trying to conceive.

Even if you don’t have clinical depression, certain antidepressants can help relieve chronic pain for some people. Medication can be injected into pain trigger points for temporary relief. Botox injections can be helpful for painful sex.

Surgery

This may be necessary to address underlying causes of your pelvic pain, for example in the case of endometriosis or removing scar tissue. Laparoscopy is less invasive than traditional surgery, and the technology enables doctors to be extremely precise.

On the other hand, surgical removal of organs, like the uterus or ovaries, can lead to more pelvic pain in some cases. For example, of people who get a hysterectomy,  40% report still experiencing pain after healing from the surgery, and 5% report worse pain. “We still don’t understand the full implications of having a hysterectomy,” says Dr. Huang.

New research suggests it can have a significant impact on your hormones. A hysterectomy should be considered a last resort after other options fail.

Neurostimulation or Spinal Cord Stimulation

This is modulation of your nervous system’s activity using microelectrodes or electromagnetic techniques. Among other things, it can block nerve pathways to divert pain.

Psychotherapy

Sometimes emotional trauma, like past sexual abuse, is at the root of pelvic pain. Processing that trauma is therefore an important part of healing. Additionally, a psychologist or other therapist can help you learn cognitive behavioral techniques (CBT) that can help you better manage your pain.

WHY YOUR MENTAL HEALTH MATTERS

And that’s just one of several reasons why caring for your mental health is so important to managing pelvic pain. Because this pain influences your relationships (especially your sex life, but not limited to that), it can make you particularly vulnerable to issues over how you feel about yourself physically, and in relation to others, says Sherri Weiser-Horwitz, PhD, licensed health psychologist and director of clinical services and research at NYU Langone Occupational and Industrial Orthopedic Center.

And there’s a lot of evidence around how people’s emotional response to chronic pain, like catastrophizing the pain or fearing it, can lead to dysfunctional behaviors and a lower quality of life. During the acute phase of pain, your brain tries to determine the meaning around it. If you think, “this is no big deal, it’s happened before, and I’ll be fine,” you’ll still feel the pain in the moment, but you’re unlikely to suffer afterwards.

But if a new pain feels like something threatening, your brain may determine that you’re in danger, and then you’ll have a stress response. This sends stress hormones throughout your body, which in turn increase your perception of pain.

And what if you keep feeling that pain, over and over?

Chronic pain develops within 3-6 months, when it doesn’t resolve. And that’s when psychological factors become more important. With pelvic pain, people become afraid to move, because when they do they feel more pain. They perceive that pain as a threat, so they stop moving in order to protect themselves from the pain. And they make an association between pain and being damaged. “It reinforces this idea that something is seriously wrong with you,” says Weister-Horwitz.

This cycle is known as the fear-avoidance belief model. It makes people less active and more fearful, so they do fewer of the things they used to do, which also makes them less social. And it’s one of many maladaptive behaviors associated with CPP. “You’re not functioning the way that you used to,” explains Weiser-Horwitz. “You don’t move the same way you used to, don’t do the things you used to do, and it affects every area of your life.”

Others maladaptive responses to chronic pain include:

●     Negative thinking, like catastrophizing

●     Excessive use of medication

●     Self-destructive behaviors done to avoid feeling pain

●     Physical and psychological withdrawal

Recent brain imaging studies like functional MRIs show that the areas of the brain that are typically associated with sensation or emotion overlap in people with chronic pain. “So their brains actually look different because of this muddling of the emotional and the physical,” says Weiser-Horwitz. This is why the interventions used to treat the physical aspect of pain can also reduce depression and increase function.

“It’s a very complex relationship between physical pain and emotional pain,” says Weister-Horwitz. Research from the last 50 years shows that “the perception of pain is not necessarily associated with actual tissue damage, and that’s why you can have people who don’t seem to have any tissue damage, or have damage that is healed, who are still in severe pain.” Thus we have the central sensitization and complex regional pain syndrome mentioned above.

In addition to all this, people with chronic pain often feel overwhelmed, powerless, like a burden to others, and like no one understands. Especially if the pain is nonspecific, if doctors can’t seem to find the cause, it’s easy to think that it must be all in your head.

That’s why one of the most important things your doctors can do is validate your pain, and teach you about how there is no difference between pain in the head and pain in the body. They are connected to each other. Just because you can’t see the source of that pain doesn’t mean there aren’t physical things going on in your body that are causing it. “The pain is always real,” says Weiser-Horwitz.

So getting that validation and education is important. And learning cognitive behavioral strategies that can help change the meaning you make around pain, and your emotions around it, can all be valuable tools for managing CPP.

What to Watch For

There are new diagnostic methods using MRI in phase II trials. This is a less-invasive diagnostic tool with potential, but it’s also costly, especially compared with an ultrasound. Dr. Huang says doctors would need to be selective about how they recommend it, given the cost. (It’s also not widely available.) She is watching for ways that it can be made more accessible to more people.

What to Expect from Your Doctors

Given their expertise in pelvic organs, start with a gynecologist for treatment (though it’s good to keep your primary care physician in the loop). Your gyno should begin with a detailed health history and walk you through the best diagnostic methods for you. They should also talk with you about your goals. Is fertility a concern, for example?

Dr. Huang’s center has screening questions that help direct the diagnostic and then treatment journey. Depending on the results, you may or may not need imaging. It’s not necessary for interstitial cystitis, for example. Different specialists handle different comorbidities. For example, some doctors specialize in treating endometriosis, while others focus on pain relief from abdominal spasms.

Questions to Ask Your Doctor

●     Why is this pain happening? Huang emphasizes, too many doctors prescribe birth control pills and stop there. You need to work with a doctor who is interested in finding the root cause(s) of your pain and addressing that.

●     Who else should I be seeing? What other specialists could give you the targeted treatment you need?

●     Why are you prescribing this medication, and what will it do for me? What are the possible side effects?

●     Are there alternatives to surgery? Too many doctors are still recommending a hysterectomy as the first option for fibroids, for example, when something less radical like myomectomy (removal of fibroids) could be more effective. You may not need your ovaries removed, just the cysts that have grown on them.

SELF CARE FOR CHRONIC PELVIC PAIN

Managing pelvic pain is largely a matter of finding the inflammatory issues you can control. Everyone’s pelvic pain healing journey is different, and that’s why having an entire toolbox of self care practices can empower you to make choices that will help you start living well.

Pacing

Pacing means spreading your work and activities evenly throughout the day, breaking up tasks into smaller intervals. It means taking a lot of breaks at regular intervals, before your body tells you that you need to. And if you’re coming back from a period of no activity, it means building back up very slowly. Pacing applies to both work and play. It’s a way to break the pattern of overdoing, crashing, and then overworking to make up for that rest time.

What does pacing do for you? It reduces the severity and duration of flare ups, reduces the need for medication, and can reduce feelings of frustration and discouragement. The UK’s National Health Service has a simple guide to creating your own pacing plan.

Breathwork

You don’t have to do yoga or meditation to do breathwork (though they certainly help). Breathwork can be as simple as paying attention to your breath and practicing slowing it down. “Breath is the most fundamental approach we can take” to pelvic pain, says Lyons. If we’re in pain, we get stressed, and then we start taking shallow breaths. That tension gets carried out throughout the body, sending distress signals to our hormonal stress response system. Our adrenals start pumping out adrenaline and excess cortisol, which causes more tension in the pelvis, which in turn will cause more pain.

You can break that cycle with breathwork. “It works really well in conjunction with some mindfulness,” Lyons says. “The two together are very very powerful tools.” Start by paying attention to where you’re holding stress in your body and see if you can slow your breath and let that stress go.

WHAT CAN I DO RIGHT NOW?

1. Tame a pelvic pain flare. Pelvic pain expert Stephanie Pendergast shares a favorite quick tip. “Take a deep breath and say these words either out loud or in your head. ‘It’s. Just. A. Flare.’” Naming a difficult feeling can drain a lot of its emotional impact. It’s the opposite of catastrophizing. Using an ice pack on aching parts, myofascial release, and prescribed meds also help. Give yourself permission to say no to anyone and anything while you’re dealing with a flare up.

2.  Connect with a support group to keep your mental health in check: 

3.  Find an experienced clinician. Use the provider network tool available through the International Pelvic Pain Society to help a clinician that specializes in pelvic pain.  

4.  Prep for your next doc visit:

  • Track your symptoms with a diary or chart
  • Be prepared to give your doctor your pain history and answer any questions
  • Bring any reports from past diagnostic tests or surgeries
  • Bring names and contact info for past providers
  • Bring a list of medications, past and present

5.  Become an advocate. May is Pelvic Pain Awareness Month. Lean how you can organize your own event here. In 2019, the National Institutes of Health awarded three years’ funding to the Multi-Disciplinary Approach to the Study of Chronic Pelvic Pain(MAPP). Write to your members of Congress and ask them to continue supporting this important research.

6.  Stop normalizing pain, especially women's pain. We need to tell each other the truth about what’s happening with our bodies. (See "Crush the Stigma," below.) 

HAVING THOSE HARD CONVERSATIONS

There is no magic pill for chronic pelvic pain. Managing your pain takes a lot of research, persistence, and compassion, and not just from your team of specialists. Your family, partner, friends and colleagues need to understand that you are on a journey, and that you need their patience and support.

That’s why you need to be candid with the people in your life about what you’re going through. Ask for support before you need it, and be specific. There will be days when you have to cancel plans last-minute because of a flare up. Letting friends know right away why you can’t join them is the most loving action you can take.

Talk about the psychological impact of chronic pain so people will understand how it can affect so many different facets of your life.

Inform your employers about your condition and request accommodations through the proper channels. Once you’re diagnosed, some of the underlying conditions of chronic pelvic pain can make you eligible for disability (ask your state and provider to be sure). It can be challenging to get full benefits, but if you’re having difficulty working it’s worth trying.

CRUSH THE STIGMA

“You’re just going to have to learn to live with this pain.” Countless people with CPP have heard this from their doctors, the very people they turn to for help. And from friends and family members you can get boatloads of unhelpful advice, from positive thinking to home remedies to the proverbial “try and relax, have a glass of wine.”

But pelvic pain is not like a passing headache or mild menstrual cramps. It’s more severe, it’s complex, and it’s ongoing.

But more importantly, we need to stop normalizing pain, especially for women. You do not have to “just learn to live with it.” There are solutions, and no, a glass of wine is not one of them. Pelvic pain requires multimodal treatment with a team of doctors. We still have a lot to learn about it, so we don’t necessarily have all the answers. But researchers are looking into its causes and treatments.

It’s also important that the people in your life to understand the mental and emotional toll chronic pain can take. You are fighting this battle on multiple fronts, including psychologically. Here's how to respond to insensitive comments: 

  • “It’s all in your head.”    No, it’s in my pelvis and my nervous system.
  • You just need to think positive.”   Some days I do, other days are extremely difficult.
  • “Have you tried (insert quackery)?”  Thanks, I’m working with experienced specialists.
  • You should exercise more”   My doctor recommends yoga and walking, so that’s what I’m doing.
  • It’s just something you’ll have to live with”  Interesting. I’m seeking a second opinion.
  • Are you sure you’re not just depressed?”  Yes, I have pelvic pain and depression.
  • I’ve heard that’s not a real thing”  Unfriend
  • You gotta build up more grit”   Excuse me, I’m going to do some breathing exercises now.

FAQs

  1. What causes pelvic pain? A lot of things can cause pelvic pain: endometriosis, bladder infections, IBS, surgical scars, and past sexual abuse, for example. It can be a combination of conditions. On top of that, your nervous system can get rewired to become extra sensitive to pain. Or, you may continue feeling pain even after an injury has healed. Pelvic pain -- it’s complicated.

  2. Where does pelvic pain occur? Pelvic pain can occur any place, internally, below your belly button and within your pelvic cavity. There are a lot of organs, muscles, and nerves packed in there.
  3. What does pelvic pain feel like? It varies. It can be sharp or achy and dull. It can feel like cramping and/or pressure. Sometimes it’s triggered by certain activities, like sexual intercourse or sitting for prolonged periods. It is often severe. The most consistent feature is its persistence.
  4. When should I be concerned about pelvic pain? If you can’t find relief from your pain with ordinary, over-the-counter pain relievers in the recommended doses, that’s a concern. It’s also a problem if your pain keeps you from engaging in everyday activities. If pain is stopping you from living your life, you need to take it seriously. It’s not all in your head, and it’s not something you should have to suffer through.
Updated on: 03/23/21
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My Story: Padma Lakshmi Talks to PPM about Living with the Emotional and Physical Toll of Endometriosis
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