As a few of our attendees talked during our recent walk, it came out that they, as a supporter of someone with Endometriosis, would like a place to be able to continue conversations, ask questions, etc. with each other. Some don’t have Facebook, so we started a Google Group (which will allow you to correspond with each other either via email or a forum online). Feel free to join:
If you’re a mom of an EndoWarrior and want to talk to other EndoMoms, please check out our new email-based Google Group, EndoMoms.
If you’re a dad of an EndoWarrior and want to talk to other EndoDads, please check out our new email-based Google Group, EndoDads.
If you’re a partner of an EndoWarrior and want to talk to other partners, please check out our new email-based Google Group, EndoPartners.
If you’re a supporter (friends or other family member) of an EndoWarrior and want to talk to other supporters, please check out our new email-based Google Group, EndoCircle.
On Sunday, August 5, 2018, our little support group hosted a BBQ to honor those who support us: our friends, our families, our partners, and fellow Sisters. It was BEAUTIFUL!
One aspect that was born out of the BBQ was this Advice Notebook. Literally words of wisdom and encouragement from:
Endosisters to Endosisters
Endosisters to Support
Support to Endosisters, and
Support to Support
We left the book out and invited anyone who wanted to write in it to do so. And we will carry this book to each support group meeting, future event, and walks and supply a pen or two.
For your reading pleasure, I present their incredible words (and will continue to update this list as more entries are added):
Advice to Endo Partners,
You will find yourself expanding the bounds and upper limits of your patience for your partners as they ride the rollercoaster of pain and emotional distress that is Endo.
You will be torn apart and feel helpless when your partner is in pain. You will find yourself wishing your partner was up to a walk or a hike when they are exhausted from the day-to-day continual recuperation they are in.
You will find yourself struggling to understand their rationale when they are in a battle with their hormones to function rationally.
You will find yourself angry at every doctor and drug manufacturer as you see ineptitude and false claims of a cure.
You will become enraged when you recognize charlatans who prey on the loved one you have, who peddle snake oil and magic crystals to “cure” a very serious and real condition.
You will come to hate the word “cure,” as it is a false promise.
You will hear of others who are saints to their partners, and you will be envious.
You will hear of those who fail in their emotional support of their partner, and it will anger you.
You will have this strange yet detached empathic bond with women you don’t know, but know they have Endo…though you will have difficulties being open at times to their path of treatment in their struggle knowing the Hell it put your partner through.
You will be seen as your partner’s greatest Hero when you are supportive, but the greatest villain when you are not available to be supportive. Fret not, the perception is temporary.
There will be times you surrender your “you time” to meet a need for your partner. You will never get that time back, but your compassion level grows with your sacrifice.
You will come to hate every bottle of painkillers in the house for what they do to your partner’s clarity, but you are conflicted because they assist to relieve the pain.
When you spot a profiteer who makes prey of your partner and her Sisters, your blood pressure will rise.
You may find yourself bitter at some of your partner’s friends that do not have Endo, and become judgmental of them for their lack of understanding and emotional support to your partner.
You will occasionally feel that you are being dragged along as your partner takes you to some support function, and it may tire you…Remember how tired your partner is. She seeks constant support because the sickness she endures is such a mystery to those who sincerely try to treat it. Endo is under-researched and over-treated by those who take stabs in the dark at it, because so little is known about it.
You will try to cage your anger as you try to learn about it, and run across three bad articles for every one good article that has some form of truth or meaning in it.
Your own gut will feel pierced when your partner screams after surgery.
Your heart will ache every time she doubles over.
So the advice to the partner is to breathe, first of all, open your understanding and stay receptive. Take time for yourself without guilt. Talk with your partner. Let go your anger when you can and do not displace it onto your partner when it is the Endo you are actually angry at.
(A little up arrow to the above entry) Ditto to all of this. Thank you. I’ve never heard this stated so truly or clearly. ❤
Practice self-compassion. Be kind and patient with yourself, especially in the moments when it feels that the whole world is against you.
Be patient even in your most painful days when you want to do something but you cant. ~Angel (husband)
Just be there for your Endo-warrior! Patient – kind – it’s a long, painful, misunderstood road for them. Be patient with yourself…do what you can — when you want to do so much more. Love my Endo-warrior. ~(mom)
There is strength in numbers. Continue the fight but always know that you are NOT ALONE in this fight! ~(husband)
To my fellow EndoSister:
Follow your gut instinct and don’t take no or maybe for an answer. You know your body best, not any doctor or nurse unless they themselves have had Endo will they truly understand. Give yourself the days you need to sleep, cry, be angry – always remember those are temporary feelings. Take time to get grounded and feel joy amongst the pain and frustration. Find a group. Bloomin’ Uterus has been instrumental in saving my life every day. These women get it, completely. Talk about it every chance you get and fight for your rights as an Endo Survivor. This will lead to greater awareness that will lead to better care for future generations. Realize that not everyone can handle the pain you feel because it’s not on the outside. Find those who can support you and be there for you unconditionally because you deserve it and are worth it. Know that you are loved.
It’s okay to get unmotivated, to feel defeated. It’s okay to not want to take all your damn meds and just lay in bed. But never, never, NEVER give up! We have the support of all our EndoSisters to push us a little when we need it. But do not give up on the fight. So many days it may feel like this is not getting better but we can keep fighting for more research and more solutions. It just simply has to be okay. ~(EndoWarrior)
Dear Endo Warriors,
There are a growing number of us in the world, in San Diego, in your community who have your back. You may feel like you’re alone. Even if you don’t feel that way now, maybe you used to. You’re not alone. Be patient with us support people (or don’t. Snap at us if you want to…sometimes we need and deserve it!)…It takes most of us some time to learn and understand, but we’ll get there. ❤
Dear Support People,
It’s so hard not to be able to “fix it.” I don’t have any advice, we all kind of figure it out as we go along. Keep listening to your loved one(s), find what they need, and offer it without asking. Keep sharing with other people who don’t have Endo…that’s how the world/medical community will eventually change and start to provide better care and research, right?! ❤
When you are doubled over in pain – reaching for your pain meds and heating pad…remember this: This is not all in your head! YOU ARE NOT CRAZY! Our society is crazy for not supporting our healing treatment and pain management…OR A CURE! Your pain and suffering is not your fault. Just because you had a cheat day with wine does not make you a “Bad” EndoWarrior. Just lay back and focus on the last time something really made you laugh so hard that you peed a little. That always helps me. There is no “right” way to deal with this disease – the only way to do any of this right is to listen to your body and your intuition. That’s the best gift you can give yourself. Love yourself. Breathe. And lean on your support system. And take those cheat days when you really need them. Life is too short to be the “perfect” EndoWarrior. ❤ Love you ❤
Never forget your strength and that of your partner. There is no map for this territory, you are bold to go into it together! Don’t forget that your affection and loyalty is foundational throughout this challenge. Continue to communicate. Continue to empathize. Be flexible and humble and wise. This lesson belongs to you, too. Do not let it pass you bay. In solidarity.
Dear Amazonian Endo Warriors –
I have watched one of the smartest, strongest, most precious person go through her pain and ups and downs with this silent monster problem and illness. It has never ceased to amaze me how she can tell her mom how tough the past few days have been and then meet me with a smile and hug later that day. She reminds me how lucky I am to have my life and not have to face Endo each day. She is my Hero and one magnificent person. Being here today with everyone makes me see how many other Amazonian Warriors there are around me each day, walking in silence. I cheer you all and quietly salute you. Carry on!!! ~ (An Admirer)
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.
It’s Friday! Another week has come and gone. Summer is officially upon us, and the year is half-over!
Today’s quote is due to the overwhelming love and support we share in a community of Warriors. Not just the Fighters, but our support: our friends, family, significant others, and even our pets.
“It was quite a beautiful thing, the way we simply just came to be. With no effort or trying, just slowly finding each other’s hands in the dark. No chains or promises, just a simple sign of hope that things will go on and get better.” ― Charlotte Eriksson, You’re Doing Just Fine
I would not be where I am today without you. And you have my love and respect.
Oh man! I cannot tell you how wonderfully excited I am after this weekend’s walk!
It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet! Out of 150 registered walkers, 120 people joined us. It was awesome! Thank you, everyone, who attended!
This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014. A HUGE thank you to everyone who donated or purchased t-shirts! We were able to once again surpass our fundraising goal! And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone! I’m just flabbergasted!
This is my fourth year hosting our walk. When I received my diagnosis, there was nothing in San Diego and I needed something. Absolutely needed it. Does that need ever diminish? I must say: nope. Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome. And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being. Well, mine at least. And we even met a few people along our route that had Endometriosis and will join us next year!
I’m still floating on Cloud 9.
Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis. This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.
The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain. The responses were:
1 – It’s worse than before
1 – No Endo was removed during surgery
5 – Yes
10 – No
17 – It did for a while
And my favorite part? We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines. Talk about embracing the fact that you aren’t alone!
You can see all of the photographs and video shared by our attendees here.
This year, seven of us delivered a speech together. There’s video out there of the speech (filmed by the wonderful Alyssa Menard):
If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below. I wanted to send a loving thank you to those brave women who volunteered to speak with me:
Lisa: Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us. Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain. It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil” or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up. I figured it was normal. And that I was weak, crazy, or just cursed.
Mirna: Our pain has a name: Endometriosis. We aren’t crazy, we aren’t weak, and we aren’t faking. But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.
Jessica: We are here today to change that. 1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors. Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone. We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again. And we stand with the help of our Sisters, our family, and our friends.
Kelly: Endo just doesn’t cause physical pain. Sometimes we feel like an incomplete woman, robbed of so many dreams. And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life. But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it. And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.
Gloria: Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying. Continue to offer that compassion and support I know you all have within you.
Meghan: And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate. Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor. There are great ones out there.
Melinda: One day there will be a better understanding of this illness; of this enemy we all fight together. But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you. Thank you.
I am so excited and looking forward to next year. If you’re interested in joining us for 2019, stay tuned!
And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!