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

Book Review: The Call to Personhood (A. I. McFadyen)

Book Review for my MA(Min) subject, Theological Anthropology.

McFadyen, A.I. The Call to Personhood: A Christian Theory of the Individual in Social Relationships. Cambridge University Press, 1990.

The Call to Personhood is an exploration into how the ‘personhood’ of persons is formed and transformed through personal relationships with one another. A personal relationship is when at least two, autonomous and independent partners engage with each other, freely and without coercion. McFayden proposes that we cannot understand what it truly means to be a person based only on our internal independence as our “personal identities are moulded through our relationships”[1]. Therefore, we can only understand our personhood in the context of our inter-personal relationships.

We find McFayden’s thesis in between individualism and collectivism. He does this by proposing a ‘third option’ that accounts for an individual’s the autonomy and personal freedom while acknowledging the influence of relationships and institutions have on a human being. McFayden builds his argument through exploring the theological and anthropological concepts of the image of God, human ontology, free will, gender, and how they contribution to a relational understanding of personhood.

Image of God

McFayden explains that humankind being ‘made in God’s image,’ (Gen. 1:26-27) refers to the relational nature humanity shares with the triune creator. He proposes that the Trinity is a unique community, characterised by unity-in-diversity and mutuality. Each person in the Godhead shares in their divinity, while unique in their distinct in their role, Father, Son and Spirit. He argues that Humans then mirror this unique community when we openly communicate and interact with one another in various relationships.

However, God’s priority in creation was not the horizontal relationship between persons, but the vertical one between humanity and himself. According to McFayden, God created humans to be his ‘dialogue-partners,’ and addresses us so. As language is the universal form of communication, dialogue is McFayden’s preferred method of relationship. Therefore, it is through being a dialogue-partner with God and other humans that one can be a person, made in the image of God, in the truest sense. And the only way to have an undistorted relationship with God and other is through a restored dialectical conversation with Christ.

Ironically, for a Christian thesis based on communication and relationship with God, there is little said of prayer. The Call To Personhood would have contributed more to the discussion by addressing individual and corporate prayer.

While McFayden adequately explains the relational side of both God and humanity, he neglects the ‘dominion’ aspect of God’s image. That is, that God created humanity, under His authority, to rule over and look after the rest of God’s creation. Addressing this would have strengthened McFayden’s contribution to the field of theological anthropology.

Human Ontology and Free Will

McFayden firmly states that being ‘made in God’s image’ is the primary ontological structure of a person. Therefore, in light of God’s ‘address’ to humanity, the primary ontological construct of humanity is relationship and responsibility. That is, persons have a responsibility in how they respond to God’s address.

‘Free will’ is understood as autonomy and the freedom to reject or accept the invitation to be God’s dialogue-partner. At Creation humanity was created with an autonomous and ‘primal letting-be,’ which became independent in the fall. McFayden’s definition of sin is then a person’s refusal to reciprocate God’s call into a relationship with Him and by extension, the closure of communication with other individuals. As being made in God’s image is humanity’s primary ontological structure, we did not completely lose that image due to sin. Humanity’s misuse of freedom that has merely distorted our response and responsibility and as a result, restoration is possible.

McFayden offers a Semipelagian understanding of Grace and salvation. God’s extended the offer of a redeemed relationship with humanity through Jesus, who was not just the messenger of God’s Word but also the Word himself. Human beings then have the ‘choice’ to accept God’s offer or not.

Gender

McFayden develops his idea of a man reflecting God’s image through gender. His most insightful thought on the topic is when he explains that Adam’s ‘helper’ (Gen. 2:18) Eve, being made from his rib, is not a sign that she is his ‘subordinate assistant.’ Rather, Eve enables Adam to understand their interdependence and that the completeness of personhood is in a community. Adam being asleep reveals that Eve’s creation was fully God’s work.

McFayden acknowledges the distinction between sexes and explores how the sexual and dialogical relationships between each mirror God. However, gender differences are not explored outside of biology.

McFayden never suggests that these communities are exclusive to man and woman. The primary focus is not on gender, rather a discussion on how all types of relationships influence identity and the need to mirror God’s invitation of Grace through the development of ideal relationships. These ideal relationships never grow through coercion but mutual, genuine and open communication.

Community

The Call To Personhood suggests that the more open and dialogical conversations an individual has, the closer bond they form to communities, and as a result increases their development as unique individuals. McFayden’s thesis encourages the contemporary church to consider the following implications

A church should find its identity in its patterns of communication; therefore, a church must be a community that reveals to the world a “genuine response [accepting a relationship with God] to a genuine call [God’s address to humanity through Jesus].”[2] Unfortunately, McFayden doesn’t offer practical suggestions, as to how a church community goes about considering and evaluating their ability to listen and respond to both divine and human words when they meet.

As sin manifests as the partial or full closure of communication with other persons, the church should be modelling the process of developing mutual, dialogical and open relationships. McFayden includes the importance of forgiveness for interpersonal relationships as well as responding to Jesus’ call to care for the vulnerable. He suggests we can do this by creating ways for those with diminished communicative capacities not to be objectified, but rather, engage with them as subjects of conversation to maintain their dignity.

Through the exploration of these ideas, McFayden challenges Christians to consider political and ethical issues regarding mutuality vs. coercion, the power and influence in asymmetrical relationships and promoting healthy relationships and community development.

Although The Call To Personhood is not an easy book to read and is very theoretical, it challenges people living in an individualistic society to rethink the way relationships affect the personhood of each individual. McFayden encourages us to understand our personhood truly by accepting God’s invitation to be His dialogue-partner and offering the same invitation to the others.

[1] A.I. McFadyen, The Call to Personhood: A Christian Theory of the Individual in Social Relationships (Cambridge University Press, 1990), 18.

[2] Ibid., 62.

‘Am I OK?’ today? Well, Life’s Slowed Down.

It is “R U OK? Day” today.

Am I okay? Yes. I think so. I will be.

Am I sad, overwhelmed, exhausted and ‘bleh’ with blood-shot eyes? Yes.

My Opa passed away today. It’s sad and I’m grieving. But I’m okay. The doctor assured us that his death was painless and peaceful.

He had a heart attack on Sunday (ironically, Fathers Day), which revealed he also had pneumonia and kidney failure. Opa could have had a few long, drawn out weeks where his body slowly shut down – but God was merciful. All his grandkids and children were able to see him the day before he passed. Then after only a couple of days in hospital, he fell asleep early this morning and never woke up. It wasn’t a sudden-shock, but was quick. In his words, yes, ‘he kicked the bucket’ (and one day we all will), but it was painless, peaceful, he knew he was loved and even got to have a beer on his last night. This is just the surface of how things seemed to ‘worked out for the best’ and I have witnessed and experienced God’s goodness, mercy and grace in a whole new way.

As a teenager, I watched a close family friend pass away and had a church brother pass away after a motorbike accident – but this is the first time I’ve experienced the death of a family member and it’s surreal. It has shocked me that as his world stopped, mine (and my family’s) slowed down while the world continues on, as it was yesterday and as it will tomorrow.

As my family I sat down with a cuppa (just after we said our final good-bye) and we were mincing our words – a fly on the wall would think we were talking jibberish. We kept dropping things and walking down the hallway, forgetting that we just needed to use the bathroom. Then mum and I finished our evening with a quick trip to coles to pick up some (much needed) cheese and milk. We came home with $30 worth of groceries, some cider, 2 parcels from the pharmacy, no cheese and the wrong kind of milk. Grief distracts you, tires you and takes up so much of your brain. Time feels like it’s gone so quickly and dragged on at the same time.

Mr Google told me that approximately 151,600 people have their world just ‘stop’ every day. If you estimate each individual has 4 people who love them, 606, 400 people have their lives slow down every single day – and grief can be overwhelming for days, weeks and months. At least 4.24 million people a week have their lives slow down because (approx.) 1 million lives stop. That’s a lot of grieving people, walking through the day, a little bit slower than the rest of the world, very distracted with a blend of apathy and sorrow.

And death isn’t the only cause of grief – people lose jobs, pets, marriages, their health and loved ones in other ways, every day. People can have their lives turn over and slowed down due to ill health, mental illness, medications, infertility, waiting for test results or simply receiving some bad, life changing news.

You never know what someone is feeling, experiencing, processing and suffering with as you encounter them. You don’t know what is going on for the ‘rude person’ who hardly notices knocking you off your feet in the street, for the friend who didn’t reply to your text, for the shop attendant who gives you the wrong change, or the driver who cuts you off on the highway.

Can I encourage you to show compassion, empathy and understanding to those you encounter? Give them the benefit of the doubt that maybe, their world has just slowed down. You just don’t know and the only way you will is if you ask.

So, you know how I am going today. What about you? R U OK?

What ‘in Sickness and in Health’ Really Means

First published on The Mighty.

If you’re thinking about marriage – you may be engaged, talking about engagement or fanaticising about marrying that beautiful man. Whatever your status is, seriously ask yourself, are you really ready to say “I do.”

After writing a letter to my newly divorced self I realised, at 20 years old, my fiancé had no idea what he was committing to. When he looked into my eyes, shaking with nerves and excitement as he said “I do,” he actually didn’t understand what “in sickness and in health” meant.

I was pretty healthy! I was studying full time and had two jobs. Yes, he knew about my struggle with depression and had cared for me through many chest and sinus infections. Even though he knew all that when he put a ring on it, he was not prepared for Chronic Pain, Endometriosis and PCOS. Really, who is?

When we married in November 2010 we were both pretty healthy. Sadly, the chronic pain from endometriosis had well and truly set in during my January period. We had barely been married two months and his promise to love me in sickness and health was already being tested.

What does in sickness and in health mean?

Sure, you’re both healthy now. You can run, go for strolls on the beach, have a 10 pin bowling date, have painless sex and ready to stick by your partner for better and worse. But…

Are you willing to take an income hit when if they can’t work full time?

Are you willing to use days off to drive your partner to the doctors?

Are you willing to accept potential infertility?

Are you willing to see a marriage counsellor to help you process the grief and changes together?

Are you willing to see a sex therapist, even if it is super embarrassing and awkward?

Are you willing to deal with your grief?

Are you willing suck up your pride, seek your own support and see a counsellor yourself to help you accept, process and manage your own feelings of loss, disappointment, resentment, anger, bitterness and unfairness?

Are you willing to use your leave to help care for your partner if they need surgery?

Are you willing to watch the person you love the most in this world suffer physical and mental pain?

Are you willing to advocate for your partner when they have lost hope and when no one else will?

Are you willing to learn about the illness with your partner?

Are you willing to do ask your friends and family for support?

Are you willing to try new activities, ones that you can do together, things you wouldn’t have tried until your options were limited?

Are you going to stick around and choose to love that person every day until ‘death do us part,’ even if you hate the illness?

It is true that you never know how you will react in a situation until you’re in it. But if you can’t answer yes to many of these questions, maybe it’s something to think about.

 

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.

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…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!

Best Roomie Ever

…that awkward moment when you realise how wonderful, loving and thoughtful your housemate is! So amazing with all the specialness… but then you realise things are moving too fast and you’re not ready for this level of emotional intimacy so you need to tell her I want to take a break… #awkwardturtle #buildingemotionalresilience #heterosexuallifepartners #bestroomieever #iloveyouforeverdeepdown #sozemotionalcripple #yourewelcome