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

Conversations With Healthy People #1: The Amusing, ‘Really?’

It’s days like today when I’m struggling to summon the energy to be a ‘functioning human being’ that I remember an honest and genuine conversation I had with one of my teenagers during Bible study a few months ago.

I recall this conversation to remind myself of God’s grace, strength and sustaining power that gets me through each day. It’s an encouragement to continue being honest about life, even when it’s painful and sucky. I must confess, it amuses me (greatly) and makes me giggle a little on the inside.

I also find comfort knowing that I can come back and read it whenever I need to.

We were discussing how God uses suffering to deepen our relationship with Him, better understand faith, build His Kingdom and bring Jesus glory. For the sake of application, I briefly mentioned that these truths give me hope, even though I am in pain every day…

…another interruption (but a welcomed one)…

“So, you’re really in pain?”
“Yes.”

“All the time?”
“Uh, huh.”

“You don’t look like you’re in pain.”
“I know.”

“Wait! You were in pain on Friday night?”
“Correct.”

“Are you saying that you’re actually in pain, right now?”
“You’ve got it.”

“…Like, now-now? Standing there?”
“Yup…”

and then he slumped back into his chair with a sympathetic bewilderment written on his face. I think he started to understand, which I am grateful for, even if it was just a little.

This wasn’t the first time I’ve had this conversation, and it probably won’t be the last. So, I’ll continue to embrace the small opportunities to encourage open and honest dialogue. Conversations that develop empathy and grace to spur one another on to rely on God and persevere in suffering for the sake of God’s kingdom.

2 Timothy 2:10 (NLT) “So I am willing to endure anything if it will bring salvation and eternal glory in Christ Jesus to those God has chosen.”

 

Speak Up

As long as we remain silent, society remains ignorant. We can empower others and ourselves by sharing truth in love! #speakup #behonest #endsilence #breakingstigma

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#speaktruth #love #mentalhealth #depression #chronicpain #endometriosis #endthesilence #chronicillness #awareness #jesus #truth #endthesilence

A Letter To The GP’s Who Never Let Me Give Up

Yesterday during my GP appointment, my (female) doctor said, “Alex! I saw you in the coffee shop earlier, and I noticed you’re looking very pretty today. Have you done something with your hair?” It’s safe to say she made my day!

I have many people who have supported me as I’ve learnt to adjust to life with chronic illness – family, friends and health professionals. I’ve seen multiple GP’s in my life and three have stood out for me, one from each of the cities I’ve lived in since I left high school. Their non-stop encouragement, compassion, and validation have helped me survive a series of unfortunate events.

Dear Dr. Sydney, Dr. Lismore and Dr. Brisbane,

Thank you for validating me when I felt stuck in your revolving office door. There have been periods where I’ve seen you monthly, fortnightly and weekly and you never made me felt guilty for taking your time or like a burden. You probably have no idea the impact you’ve had on my journey through chronic illness, but these are a few of the things I thank you for as you validated me as a person and my experience as your patient.

Thank you for acknowledging your limits as a General Practitioner and referring me to health professionals who have more training and expertise. You were never offended when I sought other opinions, and your humility meant I was able to get accurate diagnoses and try new treatments. You showed me that an effective support network had many people and was multi-disciplinary. [Dr. Sydney,] I was stunned when you wrote a thank you letter to my naturopath for her insight and test requests that led to my PCOS diagnosis.

Thank you for listening to me. I may have left your office feeling hopeless (due to the nature of the chronic illness) and in tears many times, but I never left feeling unheard, ignored, uncared for or let down.

Thank you for respecting my dignity as an adult who can make her own decisions. Thank you for not pushing me to attempt risky treatments I was not prepared to try and acknowledging the research I had done on my own. Many times I came into your office, not as Ailment Alex, but as Advocate Alex, requesting a specific referral, treatment or test. Sometimes I was way off, but your encouragement empowered me to continue as an advocate and to keep opening new doors.

Thank you for not treating me like a drug addict or another ‘fat person.’ You never hid your shock when I shared horror stories with other health professionals. You also exercised great wisdom and respect as we managed my medication increases and decreases.

Thank you for being my friend. I don’t mean this in the creepy, dependent, unhealthy, unprofessional kind of way. You shared my disappointment when treatments didn’t work and celebrated the small victories, usually with more enthusiasm than I. You were often the person I spent the most time with (other than my family), and because you were holistic in your approach, you treated me like a person, not a patient.

Thank you for being practical. You understood my personal restraints, particularly transport restrictions and financial hardship. When possible, you gave me samples, helped me access the cheapest and most convenient options and always bulk-billed. Your efforts meant I could afford my healthcare, try different treatments and see new specialists that were often helpful.

Thank you for letting me cry and empathising with my pain, sorrow, grief, despair and the unfairness of my situation. I appreciate every time you agreed that my situation was unfair, saw me as a whole person, told me I didn’t deserve this and apologised when you had run out of tissues.

Finally, each of you said something to me that has stuck with me.

Dr. Sydney, when you, acknowledging we shared the same faith, asked to pray for me, then and there, you reminded me that although I felt isolated and hopeless, I wasn’t alone, and there was hope.

Dr. Lismore, when I came to you because my suicidal ideations had returned, you said, “I won’t give up until we get you better” (and you didn’t), you showed me I wasn’t alone, and there was hope.

Dr. Brisbane, when shared my insecurities that I felt like a hypochondriac because of a string of infections, you told me to “never apologise for looking after yourself. You know your body. If something feels off, never hesitate to see me.” You, again, reminded me that I wasn’t alone, and there was hope.

So, to these wonderful GP’s, thank you for acknowledging your limitations as a human, while giving me the dignity and respect I deserve as one. Thank you for using your role to bring hope and healing to a patient who needed it as they learnt to understand and manage their chronic illnesses.

Many Thanks,

Your Grateful Patient.

If you live in Sydney, Brisbane or the Northern Rivers (NSW) and looking for a good GP, feel free to message me and I’ll pass on the names.

Winterfest 2016

Winterfest is over, God in His goodness sustained me through the week in a way far greater than I could have ever imagined.

As Winterfest approached at the end of term two, I confess, I started to freak out. I know the physical drain/impact a Holiday Kids Program can have on my body – this wasn’t my first rodeo… but last Thursday God gave me what I call a gentle ‘slap’ from the Holy Spirit. How self centred I was to think that a week of telling kids about Jesus had anything to do with me. How arrogant I was to feel like my health could hinder God’s work. How faithless it is to enter a week of mission, relying on my own strength (or lack thereof). My prayer quickly changed – if I was going to get through this week and if God wanted to use me, it was up to Him to sustain me.

In 2 Corinthians 12:9, God says to Paul, “My grace is sufficient for you, for My strength is made perfect in weakness.” My response? Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

God is faithful. I may be in agony now, but I made it through the week because of His faithfulness. I am grateful for the reminder that every step I make is based on God’s sovereign power and for His glory!

Now to rest my weary and achey body with all things pink, Annie, tea, my onesie, fluffy dressing gown, Netflix, a massive sleep in, “everyday I’m shuffling” on repeat in my head every time I walk (or more accurately, my attempt to walk that resembles a slow hobble), and the joy and peace that comes from knowing I was able to be part of the proclamation of the gospel this week.

Five Years Ago, Today…

Five years ago today I woke up bright and early, headed to Bankstown Hospital. I waited in a small room with an elderly couple until the nurse called my name. I am tagged, weighed and dressed in a beautiful white gown, socks that didn’t cover my toes and what I can only describe as a cotton, blue shower cap. I confirmed by details and hopped into bed. I had been told not to take any painkillers when I woke up, so they checked my details a second time and gave me some IV-Panadol. Not long after they wanted to be really sure they had the right person and checked my details yet again before rolling me into the pre-op room.

Enter Gyno, “so, Alexandra, I see we are doing a cystectomy today.”
“Uh, no. The cyst resolved itself; you said you were doing an exploratory laparoscopy.”
He giggles “Oh, okay then,” as he looks up from his notes.

They confirm my identity one more time before the anaesthetist gently squeezes my hand, gives me the mask and asks me to count slowly down from ten.

10… 9… 8…


I woke myself up with my own screaming a few hours later. “Did they find anything?”

It turns out, they did. Here Annie will show you what the inside of my pelvis looked like before the Gyno removed the Endometriosis (versus a healthy one).

Annie and 1st Endo (1)

Hi!

As I left the hospital a few hours later, walking in the hunched posture my body had become accustomed, a nurse said, “walk straight, you’re all fixed now.” I believed her.

Even though the surgery wasn’t a cure and it didn’t take away the pain, I was finally validated. I was no longer mystically causing myself physical pain with my mind. There was a reason. There was a disease. It was my diagnosis day.

Today marks my 5 year anniversary since I was diagnosed and look how far I have come since! Praise God!

So it with a healthy mix of sarcasm, cynicism, gratitude and hope that I say…

Happy Endoversary, Alex!

We’re All In This Together

I received some snail mail yesterday – an actual letter of the fun kind. It was such a joy to find it in my letter box, open and read it! A dear friend, a sister in Christ and chronic illness sent it from Sydney. We bonded during my gluten, dairy, and soy free diet trial; she was such an encouragement and had wealth of knowledge to make it a bit easier. When I opened the letter, I found “Chronic Illness Achievement” magnets. I was reminded that despite the pain, fatigue and headspins, I got out of bed, was kind and gentle with myself and I survived the day! It’s made this current, trifecta of a flare up just a little bit easier.

There are so many things about having an illness that is so hard, sucky and unfair. Yesterday I was reminded of one of the blessings – the community, solidarity, friendship and mutual support that can only come from shared experiences. It sucks that we have to go through the trails that we do, but at least we aren’t alone.

Sometimes I feel like I’m a member of some exclusive clubs:

When you can relate to people who also feel alone and misunderstood, no words can describe the relief and gratitude. While I was attending pain clinic, I made some beautiful friends whoes lives had been impacted in a similar way to me. One of the most significant and helpful parts of the program were these relationships. While I was in Lismore, I participated in a 12 step program where I found mutual support and understanding from others with mental illness. I made more more progress after 12 months of mutual help then I did with six years of one on one therapy. And last month I organised a met up with three other women who have Endo and living in Brisbane – we spent nearly 3 hours sharing our struggles and most of that time we were in laughter as we told our horror stories that no one else understands. Some of my closest friendships grew because we share pain, emotional and physical and had experienced the life-altering impacts it had on our lives.

I need to thank a zillion people for being on my support team – but this is my thank you to the many friends who have been able to encourage and support me as we have learnt to live with chronic illnesses. Thank you for being honest and vulnerable. Thank you for sharing and listening. Thank you for supporting me and letting me help you. Thank you for showing me I wasn’t alone when my feelings were telling me otherwise. Thank you for praying with me and for me. Thank you for your kind words and genuinely checking in when you were barely functioning yourself. Thank you for teaching me self-care and compassion. Thank you for pointing me to Jesus so that I could rely on God, rather than my weaknesses. Thank you for being a mirror so that I could see reality more clearly.

Remember, we are not alone and to believe that you are completely isolated is a lie from the enemy. You have me and have millions of others who, even though their individual experiences may be different, understand. They want to support you the way others have supported them and social media has made connecting and networking with people so much easier – especially the days you struggle to get out of bed!

My prayer is that you will find the courage, energy, and spoons needed to meet others who ‘get it and are also trying to manage their illnesses one step at a time. Feel free to send me a message – I’m an extrovert, so I love conversations and if I’m not well enough to chat today, I will tomorrow.

tumblr_mzsn1kDZD21tq4of6o1_250.gif

…and even though we may not be able to physically dance like the wildcats, we’re all in this together.

To My Newly Separated Self After My Illness Led to Divorce

Writing this was emotional and cathartic. Not yet had the guts to post this on personal pages – maybe one day.

To My Newly Separated Self After My Illness Led to Divorce

Two and a half years later, I’ve written the letter I wish I could have read when my marriage ended because of my chronic illnesses.

To my newly separated self,

It’s over. It’s actually over. The person you loved the most has gone. Your best friend abandoned you. The person who made you a lifelong promise of commitment “for better and for worse… in sickness and in health” in front of your friends and family has walked away. No more cuddles, no more sweet texts, no more dinner dates… just — gone.

Yes, it is unfair, and it is scary. I know you’re heartbroken, hurting, ashamed and grieving. I can still remember feeling as if my heart was being ripped out through my stomach. I know you’re hurt, scared of judgment and being alone…

… but please give yourself space to grieve. You had already lost so much, your body, your mind, your dreams for the future and now your partner. Loss of any kind is difficult to deal with, so allow yourself to grieve. Cry, binge on Netflix, burn your photos, buy some new clothes, change your hair, eat liters of ice cream, absorb yourself in a book or visit your best mate — do whatever you need to do to process the reality that the relationship is over. The only wrong way to mourn is to deny yourself of the right and necessity to grieve.

Know that your spouse wasn’t rejecting you, they were trying to escape the illness. I don’t say this to justify the broken promises, nor devalue your pain. I say it to discourage self-blame, self-hate guilt and shame, because it is not your fault. You didn’t get to choose to be healthy, but your spouse chose not to love you unconditionally or honor their commitment.

Please don’t isolate yourself — you are not alone. Many relationships in which one partner has a chronic illness break down. It feels easier to stay in bed and not face the world, but there are people in your life who care about you and want to offer support. Yes, yes, some people will always be ignorant, but many will surprise you, and you can learn to ignore the ignorance. Besides, those who have dismissed your illness in the past may finally understand how it has infiltrated every part of your life.

Allow others to show you compassion and how valuable you are. It will help fight against and disprove the lies that you are unlovable, worthless, damaged goods or alone. It will reflect how resilient you have become. When people reach out, don’t send them away and when people feel far away, ask for support.

Learn to accept and forgive. Unfortunately, we live in a broken world inhabited with broken people that have broken relationships. This sad reality means forgiveness is necessary, unless you desire to grow bitter. The spiritual and emotional freedom that comes from forgiveness will help you accept your new life and grieve. Forgiveness, freedom and acceptance are far better than being consumed by hatred.

So don’t lose hope. Instead, share your pain, fears, tears, tissues, Netflix subscription, and tubs Ben and Jerry’s. Remember to say to yourself, “I have a restored relationship with the powerful creator of the universe, and his faith gives me tangible hope. I am loved and resilient. It’s OK to grieve. I can forgive and persevere.”

Besides, now that you’re single, you no longer have to consider someone else in most decisions you make or shave your legs every week. You can eat the food you want, spend more time with friends, choose the TV channel and work toward regaining your independence. 

Know that you have the strength to grieve your previous life and accept this new one. Keep trucking on.

With care, compassion, empathy and love,

Your divorced self.

P.S. I don’t recommend looking at wedding photos too much — it’s not a fun time!