Six 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 also drags 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, PCOS, Ulcerative Colitis, miscarriage or ectopic pregnancy, Vestibulitis, Vaginismus, Vulvodynia, prolapse and poorly executed episiotomy stitches (yeah, there are a lot of reasons, and this isn’t an exhaustive list). In Australia, approximately 1 in 4 women between the ages of 16 and 24 have a long-term pelvic condition, while 1 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 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.

It was a sobering thought when I realised I have only had one sexual partner, yet I’ve lost count of the number of people (well, health professionals) who have put their fingers inside of me (charming, I know). 

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.” Good luck trying to tell someone your cervix is cramping, that you have a stabbing pain stemming from your vagina, or that sharp pains are radiating from your clitoris without coming across crude, rude and totally inappropriate.

It’s not kosher 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 does unsought – and this is not okay. 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 Goes Undiagnosed and it’s 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 GP’s are unaware of pelvic pain causing conditions. It’s also the reason why many suffer 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 and especially true for 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 sensitised 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, spasms and desensitise the nerves in the pelvis is seeing a specialised 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 it’s 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, reaping 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 centre 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 

Bottomline, Pelvic Pain can make it hard to find any pleasure in sex at all – and that’s not fun at all!

5. It’s Rarely Localised

The pelvic floor is connected to muscles and ligaments that attach to the hips, groin, thighs, buttock 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 usually can increase pain somewhere else in the body.

Pelvic pain can also have an impact on bladder and bowel functions. Irritable Bowel Syndrome and Internal 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 results in painful urination, frequent UTI’s and incontinence – the embarrassment just keeps on keeping on. Until a few years ago, going to the toilet was agonising 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 disabled toilets – it’s not because I’m rude, lazy or inconsiderate – it’s 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 gynaecologist, you need someone who specialises in your medical condition. You can’t just see a physiotherapist, you have to see a physio who has specialised in treating the pelvic floor. If pelvic pain impacts your sexual relationships, seeing a relationship counsellor 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.

Yeah… so, please remember that vagina, clitoris and anus aren’t ‘naughty words,’ they’re just nouns describing body parts that 50% & 100% of the population have.

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.

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 empathise with the extra burden it carries. We already struggle daily with shame, taboo and awkward-turtles that come with Pelvic Pain, please, be a legend, listen with an open mind, don’t judge, empathise 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
International Pelvic Pain Society

10 thoughts on “Six Hidden Realities of Living with Chronic Pelvic Pain

  1. Acushla Adams says:

    I pray for all those who have chronic pain and especially pelvic pain, and especially for you Alex. I’m so proud of you for opening this subject up, generations older than you suffered in silence, so the problem wasn’t even recognised. They could neither obtain nor give comfort. Praying for you always, with much love. Cushie.

    Liked by 1 person

  2. leoshine says:

    Your details are not more ghastly than the actual experience! I know and understand. By God’s grace I had surgery and the pelvic physio, and am living on the other side of the agony. Thank you for your ministry to those who continue to suffer. I do enjoy your posts.

    Liked by 1 person

  3. mypcslife says:

    That’s just it sis. We need to talk about it, we need to remove the stigma and stop normalizing the unacceptable.
    When I wrote a whole post on my loving and hating sex people were horrified. I actually started trying to put “vagina” in most conversations to see how people would react. It was hilarious and sad all at once.
    I think it’s time for us to just be open and honest. It’s our lives and our pain and it cannot / must not be hidden and we cannot accept being made to feel embarrassed because of it.
    We have to inspire the change.
    More power to you!

    Liked by 1 person

  4. Samantha Thuesen says:

    It’s so important that articles like these exist. Thank you for sharing. Your strength is inspiring. -bsrealtalk.com

    Like

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