Feel Good Fridays

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Friday! Already?!?  Where does the time go?

Since so many of you Readers are EndoSisters, and you are the strongest women I’ve ever met, this one is for you:

“After you have suffered great losses and known much pain, it is not cowardice to wish to live henceforth with a minimum of suffering. And one form of heroism, about which few if any films will be made, is having the courage to live without bitterness when bitterness is justified, having the strength to persevere even when perseverance seems unlikely to be rewarded, having the resolution to find profound meaning in life when it seems the most meaningless” 
― Dean KoontzThe City

You are my heroines.  We are Mighty.  And we are all in this together.

May we persevere.

Love you, Lisa.

 

Blogs I updated this week:

Dungeons & Dragons & Donuts – added our June 24, 2018, session.  This session didn’t go the way any of us expected it to!

Endometriosis and the Psoas Major Muscle – added a May 2018 study (Journal of Minimally Invasive Gynecology) of a 28-year-old woman and her symptoms

Share Your Story: Rose of Sharon

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“Rose of Sharon” was diagnosed when she was 26 years old.  Now 44, she comes to us (and you) for help.

Rose of Sharon’s Journey: For 19 years I suffered in silence ’cause no one took my condition seriously not even doctors! I feel as though I was cursed! Can’t keep a relationship, a job & a happy life. Endometriosis stole my entire life! I have never gotten pregnant. Sex was excruciating, the very thought of intimacy was terrifying! For 19 yrs I have endured & continue to endure pains that left me thinking of suicide! I have been told by doctors after six surgeries that I have to just manage this demon disease! From day one of my menstrual cycle, it has been hell. I just cannot live like this but I don’t know what to do or try again! I NEED help!

Words of Advice for Us:  I live on other EndoSisters strength & advice but I will say this it’s not hidden no more. Awareness is the key to this terrible & demonic disease!!!

The Last Word: Please help find a cure!

I want to send a special Thank You out to Rose of Sharon for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  May you find the help you seek.

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

In a Moment of Weakness

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My third robotic-assisted laparoscopic surgery is now seven days away.  As I lay awake in bed last night, my mind wandered to the process:  pre-op/intake, placement of the IV, a conversation with my surgeon, trying to wear a brave face as my Mom and husband do the same, the  ride down the hallway with the overhead lights (just like in the movies), the surgery room doors opening, and being greeted by staff as they make last-minute preparations for the procedure.  Then the moment of being placed on the operating table, getting strapped in, and the anesthesiologist coming to send me off to sleep.

It’s not easy.  It’s not a grand adventure.  But, partially it IS an adventure: the hope of relief, of a returning quality of life, a possibility of normalcy.  But, let’s be honest…it’s terrifying, it’s scary, and it’s going to hurt when you wake up…and the recovery takes weeks just to function; months to feel normal.  And for some women: they never get that sense of normalcy.

So, last night as these thoughts tumbled through my brain, I reached my hand out to my husband and laid it on his hip.  Before I knew what I was saying, the words “I’m nervous,” gently babbled out of my mouth.

He reached down and stroked my hand with his, then he pulled my hand up to his heart and held it there.  I closed my eyes and silently let the tears flow.  And he just held my hand firmly against his beating heart.  Until I fell asleep.

I love him. So very, very much.

I often get asked, “How does your husband deal with your illness?”

This.  This is how.

I don’t know where I would be in this Journey without him.

 

 

Share Your Story: Coby-Lea

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Coby-Lea was recently diagnosed with Endometriosis at 22 years old.  Living in Northern Rivers, New South Wales, she wanted to share her story with others today.

Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.
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On the 27.6.18 I went for a hysteroscopy, D & C, laparoscopy & dye to finally receive a diagnosis to explain the bed ridden, knife stabbing, punching pain I’d been feeling in my abdomen, especially the past 6 months in particular. In the lead-up, one dr said to me ‘oh it must just be some bad period pain, I’ll give you a script for some pain relief’. Strange, I thought, considering I hadn’t had a regular period for 13 months, since having a miscarriage that broke me in many ways and again the doctor’s words pained me ‘it’s a good thing it was early’. I went for an ultrasound to make sure my miscarriage didn’t leave anything behind. I was told there was some tissue that would pass out. Wrong. I ended up with an infection in my Fallopian tubes, so I found out after my first visit to  emergency. Another 2 emergency visits and 3 doctors visits within a month finally led to an appointment with a gynaecologist. Hooray, I thought, some answers finally. With all my history and symptoms, the gynaecologist didn’t muck around. I was heading for surgery within a month. Thank goodness because the month leading up to surgery was one of the most painful months yet. It’s funny though because I’d tell people I’m in a lot of pain and not feeling well and they’d respond with ‘oh you look fine!’. One day at work I was in agony and nobody could tell. I soldiered on doing my job because living out of home requires me to work full-time and with no sick leave, I had to do what I had to do.
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Surgery. I don’t remember much, just the anxious feeling I felt when being rolled into the theatre room to be knocked out. Lots of people. Bright lights. Cold. Fast forward to waking up in absolute agony, crying for relief. A few hours later I was home, unable to move. Exhausted. The next few days that followed were extremely painful, as the gas they pumped my stomach with released through the nerves in my shoulder. Now here I am, one week after surgery and just had my follow up gynaecologist appointment and stitches out. I was diagnosed with endometriosis. It was removed, but there are chances of it returning. How to get rid of it if it returns? Surgery, again.
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Endometriosis. Wow. 22 years old, recovering from a surgery that removed endometriosis. I’m baffled. On average it takes 10 years to diagnose this. It’s gone, I repeat to myself. It’ll be ok. Be positive, it won’t come back. I have to skip my period for 3 months to help prevent it from returning, although there’s no real prevention. The word kept playing on my mind and how casual the gynaecologist was when telling me … ‘so we’ve removed endometriosis, here’s some photos from the surgery… now let’s remove those stitches’. Hold up, I thought. What is endometriosis exactly? How will this affect me? Will it come back? How did that tissue cause so much agony and pain? So many questions. I was handed a pamphlet to help understand. But yet, I still had no answers. Because there aren’t any.

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I always thought I’d keep my battle to myself, my partner and close family. Because it’s a personal issue, private. I didn’t want everyone’s sympathy, or anyone to feel sorry for me. Or for people to think I was seeking attention, I’m certainly not. But now, knowing that there’s so many others out there who think the same as me and hide their illness, I feel the need to speak out and reach out. You’re not alone. It’s ok to have bad days. Speaking out, asking for help and talking to others is not seeking attention, it’s seeking answers and support, like what am I dealing with? How many other women suffer? Why does someone with mild endo suffer more than someone with an extreme case? Why do some people feel pain and others don’t at all? What happens if it returns? Will I be one of the 3 in 10 women that will struggle to fall pregnant? What can I do about this?

Words of Advice for Us:  Don’t suffer in silence. Speak out, seek support & answers. You’re not alone xxx

The Last Word: Thank you! For providing a platform for endosisters to share

I want to send a special Thank You out to Coby-Lea for being brave enough to share her personal story, struggle, and victories with us today.  Welcome aboard the EndoTrain.  May you find the support of EndoSisters worldwide, as well as some answers and relief.  If you ever need anything, I’m right here.  You are a beautiful, brave, and strong woman.  Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Michelle

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Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

In 2012 after having my third son I was having lower back pain and the pain seemed unbearable! Move forward to 2016 after both hip surgeries and pelvis surgeries I was having unbearable pain again and the Hopkins doctors were concerned it became malignant so I had a scan that showed ovarian cyst large enough concerning my pain, and after Christmas I was given an ultrasound and told I had two that seemed like chocolate cysts.

By February and March they did lower scopes since I was having bowel issues too. While that came out fine, I found a doctor that specialized in endometriosis and felt I had it. I knew the pelvis pain wasn’t from fibrous dysplasia and with that condition it made it hard to know exactly how much. I went ahead and scheduled surgery for hysterectomy and removal of cysts. So surgery was supposed to be 4-5 hours and it ended up being 9-10 hours. I had it mid-June. Apparently, I had one of the worst cases they have seen.

All my pre outpatient tests did not show the endometriosis on my intestine, rectum glued to my uterus and a more concerning part deep down in my uterus. I’m 2 weeks post op, stayed in hospital for three days. While I have stitches on my stomach, the inside lower is the concern of healing properly. Post op is up and down. Before surgery I was at gym 3 days a week so I have been walking each day but I still have a lot of pain. I feel like my endometriosis was over a scale I’d 10 always. Right now my lower back pain has since lowered significantly and while this not a cure I feel like this surgery for me really did benefit me. I did end up in hospital not even a week after due too breathing problems. Due too all the gas in stomach and upper. I had no issues passing gas and pooping but that was a goal I was determined to meet because I heard that is terrible. The upper gas was hard, and I had a breathing treatment for 10 days. I’m am 16 postop and sleeping is hard. I wake up with pain but in stomach and that sounds normal. My doctor is shocked if how much walking I’m doing but I feel like I’m slow and to be honest I didn’t start driving until a couple days ago and with three kids I don’t go far right now. Lifting is no joke. You have to have someone for 8 weeks to lift so your bottom doesn’t get messed from everything they did.

We have military, my school, and police department support and it has really helped. I have had many surgeries on pelvis for my dysplasia tumor but this one has been the hardest to experience and endure. Your body gets beat up and there is not physical therapy, only pelvis floor therapy which is something you do later on if you have rectum damage. I will have to go on a medication to help prevent more endometriosis. I only my ovaries left and that is bittersweet but I have also realized how lucky I am that I got three with endometriosis as the doctors are in disbelief and say I was blessed.

I think every case is unique and so a treatment has to be in the best interest for you. I hope this gives some insight on the treatment for it.

Words of Advice for Us:  Don’t lose hope. If you have a chronic pain seek medical attention and don’t be afraid of getting a second opinion.

The Last Word: I would say If you have chronic pain and it’s hard and challenging by nighttime don’t rely on pain meds find a solution but seeking a better treatment.

I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today.  As you say, “Don’t lose hope.”  You’re not alone in this battle.  You are a beautiful, brave, and strong woman.  Thank you!!!

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays!

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Storm in the Mountains by AlbertBierstadt

Sorry I’ve been unable to blog lately.  I simply haven’t had the time or energy.  BUT, it’s Friday. And I’ll always try to make time for Feel Good Fridays!  Today’s quote is a doozy and it hit me right in the Feels:

“The storm is out there and every one of us must eventually face the storm. When the storm comes, pray that it will shake you to your roots and break you wide-open. Being broken open by the storm is your only hope. When you are broken open you get to discover for the first time what is inside you. Some people never get to see what is inside them; what beauty, what strength, what truth and love. They were never broken open by the storm. So, don’t run from your pain — run into your pain. Let life’s storm shatter you.” 
― Bryant McGillSimple Reminders: Inspiration for Living Your Best Life

For any of us facing troublesome times, or scary times, or uncertain moments, or trials and tribulations, or even just a moment of sadness…this one is for you.  And I.  May we hold firm, weather the storm, and pass through it.

Have a wonderful weekend.  And I wish you strength and peace.  Love, Lisa

There was a cancellation!

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My August 15th surgery has just been bumped up to July 18th!!

My work is totally cool with the change.  HR even came in to offer some kind words followed by, “I’ve never been more excited for someone to get a surgery.”  He knows how much I’ve been hurting lately.

My Mum can still join us!

And I’m nervous and excited and scared and and and…the whole spectrum of emotions that bubble-up with a pending surgery.

Best news ever.