6 Hidden Realities of Living With Chronic Pelvic Pain

First, a warning without apology: this is a TMI post, discussing six hidden and very uncomfortable aspects of the pelvic pain experience. No one likes pain and no one can begin to comprehend the experience of chronic pain until you’ve been hit with it. It’s uncomfortable, frustrating, incurable, exhausting and life-altering. The chronic pain train can also drag behind it carriages filled with medication side effects, fatigue, painsomnia, specialist visits, unemployment, disability, isolation, poverty and mental illness.

But chronic pelvic pain, by its very nature and location, adds a new dimension of humiliation, shame, violation and stigma. Pelvic pain can be caused by conditions such as endometriosis, adenomyosis, fibroids, scar tissue, polycystic ovary syndrome (PCOS), ulcerative colitis, miscarriage or ectopic pregnancy, vestibulitis, vaginismus, vulvodynia, prolapse or poorly executed episiotomy stitches (yeah, there are a lot of reasons, and this isn’t an exhaustive list). In Australia, approximately one in four women between the ages of 16 and 24 have a long-term pelvic condition, while one in 12 men exhibit pelvic pain in the absence of a medical condition. So, in light of Pelvic Pain Awareness Month, here is a list of “hidden” realities for women (and I’m sure men can relate, too) that can come with having chronic pelvic pain.

1. Your “Private Parts” Don’t Feel so Private

I don’t know any woman who likes getting a Pap-Smear or internal ultrasound; it’s awkward, uncomfortable and makes you feel vulnerable – but most of the time you have to do it if you want to maintain your good physical health. When going to the doctor with a pelvic pain complaint, they tend to examine the site of pain. some of this can happen by pressing on the abdomen, but a lot of it has to happen through an internal examination – yup, someone’s fingers poking and prodding in an already sore and tender vagina. Something which is supposed to be personal and private can suddenly gain a large audience in a small amount of time.

2. Taboo

It’s fairly simple to explain that “my knee is killing me because I’ve done my ACL,” “I have to stretch regularly because I have a slipped disk” or ”my left side is sore from a hip replacement.” It’s more difficult to tell someone your cervix is cramping, you have a stabbing pain stemming from your vagina or sharp pains are radiating from your clitoris without coming across crude, rude or totally inappropriate. It’s not socially acceptable to talk about your genitals, reproductive organs and sexual health. People don’t want to say the words and others want to hear them even less. It’s just too taboo.

The problem is, when you bow down to stigma and stay silent, important issues go unspoken, unnecessary shame is projected and necessary medical treatment goes unsought – and this is not OK. Everyone should be encouraged to seek medical advice for any persistent pain. Everyone should be given the basic human right of being heard when communicating their pain experience to others.

3. It Often Goes Undiagnosed and Is Extremely Hard (and Uncomfortable) to Treat

Referring back to the female reproductive system being a “taboo” subject, I believe this is one of the reasons medical research in this area is lagging and why many GPs are unaware of pelvic pain causing conditions. It’s also the reason why many struggle in silence, putting off seeking medical help and making the epidemic appear less severe than what it is.

But when someone finally decides to seek a diagnosis and treatment, it’s not a matter of having a blood test. The first step is usually an internal examination which is painful physically and can make one emotionally vulnerable. This can be true for teenagers, people who aren’t sexually active or those who have experienced sexual abuse/trauma. Treating the pelvic floor can be even harder for men, as the only way to directly and internally examine and treat a male with pelvic floor pain is through the anus.

Conditions like endometriosis, adenomyosis, fibroids and scar tissue find their most accurate diagnosis and effective treatment in surgery. For these and many more reasons, both men and women can spend years going from doctor to doctor, desperate for a diagnosis.

When you finally have a diagnosis, treatment can feel just as difficult, inconvenient, painful, distressing and violating. Once a medical condition has been treated, there is often residual muscle tension and nerves can become over-sensitized to pain signals, which results in a chronic pain syndrome in the pelvic region. The best treatment option I’ve found to reduce muscle tension and spasms and desensitize the nerves in the pelvis is seeing a specialist in pelvic physiotherapy. (Treatment from a Pelvic PT can include a pelvic remedial massage, the use of vaginal dilators and internal TENS unit). I have recently begun researching pelvic botox injections, and it seems to be having positive results.

My point is, managing any chronic illness and pain is difficult, but trying to diagnose and treat pain in the pelvis has its own “special” difficulties and frustrations.

4. Sex: a Painful Chore

Sex is meant to be pleasurable, bringing two people closer together physically, emotionally and relationally. However, it’s hard to enjoy sex and reap its benefits in a relationship when it exacerbates pain. Some people experience pain during penetration due to a tight pelvic floor. For other women, any kind of sexual arousal and activity can cause a great deal of pain too. Others experience orgasms that, instead of bringing euphoria and a physical release that relaxes the body, turns each nerve ending of the pleasure center into a vicious postman, delivering a package of pain to the rest of your body. In relation to women, the clitoris has over 8,000 sensory nerve endings (twice as many as men) which can affect up to 15,000 more nerve endings in the pelvic area. That means the pelvis is already a very sensitive area for women and when pain is involved, all those nerve endings act like speakers in a radio, elevating the sound of pain signals.

The bottom line: pelvic pain can make it hard to find any pleasure in sex – and that’s not fun at all!

5. It’s Rarely Localized

The pelvic floor is connected to muscles and ligaments that attach to the hips, groin, thighs, buttocks and lower back. Therefore, pelvic pain is usually accompanied by pain in these areas. Sitting or lying in a position that alleviates pain from the pelvis can usually increase pain somewhere else in the body.

Pelvic pain can also have an impact on bladder and bowel functions. Irritable bowel syndrome and interstitial cystitis also piggyback on other conditions I’ve mentioned above. When a girl’s gotta go, she’s gotta go! If my bladder is full, pain increases. Many pelvic pain-causing conditions result in painful urination, frequent UTIs and incontinence – the potential for embarrassment just keeps on keeping on. Until a few years ago, going to the toilet was agonizing because I had a lump of scar tissue between my cervix and rectum. And the longer I left it, the worse it got, so I avoided drinking fluids and was constantly dehydrated. I still have times when I experience sharp bladder pain, so on occasions, I use the accessible toilets – not because I’m inconsiderate, but because I actually need to use the bathroom ASAP.

6. It’s Expensive

If a GP doesn’t have the expertise to properly diagnose and treat you, referrals are necessary for proper care. You can’t just see a general gynecologist – you need someone who specializes in your medical condition. You can’t just see a physiotherapist – you have to see a physio who has specialized in treating the pelvic floor. If pelvic pain impacts your sexual relationships, seeing a relationship counselor who has experience in sex therapy can also be an expensive necessity for the longevity of the relationship. Medical appointments are expensive, specialists are even more so.

If you are experiencing pelvic pain, you’re not alone, there are others who understand the emotional toll it takes. I hope you can find safe people with whom you can be vulnerable and speak honestly about your struggles and frustrations.

Please remember that vagina, clitoris and anus aren’t “naughty words.” They’re just nouns describing body parts that approximately 50 percent and 100 percent (respectively) of the population have.

Haven’t got pelvic pain? Be a safe person for someone who does. I hope that when you meet people who have chronic pain you are kind and compassionate. And next time you speak with someone who has pelvic pain, I hope you can empathize with the extra burden it carries. We may already struggle daily with the shame, taboo and awkwardness that come with Pelvic Pain. Be a legend, listen with an open mind, don’t judge, empathize and be kind.

Have I missed anything? Please share and contribute to the discussion if I have!

If you’d like more information on living with pelvic pain, here are a few websites with helpful information: Pelvic Pain Foundation of Austalia, Pelvic Pain SA, Australian Pain Management Association and International Pelvic Pain Society.

This post originally appeared on Breaking Stigma.

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Thinkstock photo via AndreyPopov.