Endo Awareness Month Challenge
I thought this may be a fun way to get to know each other and share some info that may help other Endo Warriors. It's not really a challenge...just a challenge to participate I guess. This is something I have done on previous years on instagram. You don't have to answer all of them if you don't feel comfortable doing so.
1) Your name: Ray
2) How long have you had Endometriosis: Going on 22yrs
3) How long have you been diagnosed with Endo for? 15yrs.
4) How did you finally get diagnosed? I was fed up with the debilitating cramps and stopped believing my mom when she said it was normal. My GP sent me to a GYN (I still see her) and during our first appointment she said that she was 95% sure I had Endo. She booked me for an exploratory laparoscopic surgery where it was confirmed Endo and ablation was done.
5) What are your main symptoms: Bloated belly, brain fog, debilitating cramps, aggravates my IBS, fatigue. There may be more but with my other diseases, it can be hard to tell whats caused by what
6) What medications/treatments do you use: I take Visanne and medical marijuana (legal here in Canada). Pain killers never helped and usually came with nasty side effects and some permanent damage.
7) What are some hobbies/interests you have: I love taking nature photos, nature walks, listening to the rain, and painting
😎 How many surgeries have you had: I have had 2 ablation surgeries. The second one was in 2018.
9) What three words would you use to describe Endo: Massively life altering
10) Do you have any distractions? My husband and video games.
11) What Endo myth do you dislike the most? You just need to think happy thoughts and read a book on trauma.
12) Do you have other illnesses? I have Fibromyalgia, IBS, RLS, Obstructive Sleep Apnea, undiagnosed heart issue and maybe something else. (Still working to figure it out)
13) Has there been a positive thing about having Endo? I discovered who truly has my back. My Dad and my husband. I have also found this amazing community!
14) Is there anything you have learned from Endo? I have learned to stand up for myself. I have a stronger back bone from it. I have learned that self-care is critical and not at all selfish.
15) At this very moment, how are you? Not too bad. In constant pain, fatigued but also feeling very hopeful. I am also very grateful.
16) What are you thankful/grateful for? I am thankful for my loving, caring husband. I'm grateful my Endo is borderline remission/extremely slow growing. I am grateful I removed the toxic abusive people from my life so I am now only surrounded by those who love and support me. I am grateful medical marijuana can help me with as many different symptoms as it does, without it I would be dead.
17) Are you inspired by anyone? I'm inspired by my fellow Endo Warriors. All of you are so amazing! Look at what you have survived. I thank you so much for sharing your incredible journey with us all.
1😎 When you were first diagnosed, where did you get your Endo info from? My GYN didn't tell me anything so I went home and found the Endometriosis Network Canada website https://endometriosisnetwork.com/
19) Do you have any comforts? I'll grab my incredibly soft blanket. I slept with a teddy bear for the longest time. I also turn to comfort foods like ice cream, chocolate and certain meals like spaghetti, and chili.
20) Do you have any inspirational quotes? "Sometimes you'll be in control of your illness and other times you will sink into despair and that's OKAY. Freak out, forgive yourself, and try again another day."
21) Any advice for fellow Endo Warroris? It's ok to grieve the loss of the life you had before Endo. Eventually, you will grow into your new life. You will be able to find a way to survive and thrive, it may take time and a lot of hell before you get there.
22) What is your biggest achievement since getting Endo? My husband and I eloped. I planned and arranged everything. I followed the advice: Keep It Simple Spoonie. That way it was the least stressful way to get married. We had my Dad & my husbands Mom and step Dad as our witnesses. It was even a get-away elopement.
23) Do you have a support network? My husband, my Dad and this community.
24) Favorite place to be? A region in my province (in Canada) called The Kootenay's. It's a wonderful mountainous area. Fresh air, natural foods and a laid back energy. I thrive so much better there. I sleep better, am able to eat more and go on longer walks even some small hikes. My goal is to live there.
25) Is there a side effect you didn't expect? I ended up developing a sensitive bladder. Urinating became painful and very difficult to initiate. I eventually learned how to overcome the difficulty and the pains aren't so bad.
26) Do you know what stage of Endo you have? Stage 2
27) What I wish people understood about Endo? Just how debilitating this disease can truly be
2😎 What cheers you up? My hubby, nature photos, animal pictures and videos, this video of a Grandma reading to her Grandbaby https://www.youtube.com/watch?v=gbsZohEMn38
29) Do you find it challenging to advocate for yourself: Yes. I have a fear of authority figures and doctors fall into that. I am getting better but its still not easy
30) Random thing about yourself: I'm an empath
31) Treat yourself, you deserve it.
Thank you so much to all who participate.
Okay, I'll bite!
1) Your name: Katrina2) How long have you had Endometriosis: 30 years
3) How long have you been diagnosed with Endo for? 15 years
4) How did you finally get diagnosed? I had a recurring pain in the left side of my pelvis that kept getting worse. I finally went to a gyn who did an ultrasound and found an endometrioma. After a lap, she confirmed endo.
5) What are your main symptoms: Bloated belly, sciatica, pelvic pain, IBS, fatigue, allodynia, migraine.
6) What medications/treatments do you use: NSAIDs, magnesium, gentle yoga stretching, walks, and I've had four surgeries.
7) What are some hobbies/interests you have: Like Ray, I love taking nature photos. Last summer I started photographing mushrooms and slime mold! I am a voracious reader and I love discovering new music. I also co-host a podcast on dreams and the earth, and I enjoy doing dreamwork with people.
😎 How many surgeries have you had: 2 ablations, 2 excisions. Last one was May 2021.
9) What three words would you use to describe Endo: Disabling chronic illness
10) Do you have any distractions? My cat Harvey, tv, Spelling Bee game on NYTimes app, Wordle, TikTok
11) What Endo myth do you dislike the most? It's just a bad period
12) Do you have other illnesses? Mast cell activation syndrome, IBS, migraine, dysautonomia, generalized anxiety disorder, and potentially others I'm trying to get diagnosed.
13) Has there been a positive thing about having Endo? I have become an excellent advocate for myself. And I discovered this amazing community!
14) Is there anything you have learned from Endo? I have learned to rest when I need to and to not ignore what my body is telling me.
15) At this very moment, how are you? Not that great, to be honest. There are a lot of painful changes happening in my life right now and I am putting one foot in front of the other.
16) What are you thankful/grateful for? I'm grateful for my network of friends, for my cat Harvey, for my brother who has my back 100%, for my house that is less than 10 minutes away from two fantastic parks, and for the endo warriors I've met.
17) Are you inspired by anyone? Like Ray, I'm inspired by other endo warriors, especially my trans/nonbinary warrior family.
1😎 When you were first diagnosed, where did you get your Endo info from? I didn't learn much about endo from the gyn who diagnosed me...I probably read a little about it online. It wasn't until 2019 when I had a ruptured endometrioma that I started doing my own research and found Nancy's Nook, where I did a deep dive and finally learned a ton about the illness.
19) Do you have any comforts? My bed, my cat, reading, listening to music that stimulates my vagus nerve, and chocolate.
20) Do you have any inspirational quotes? I'm blanking on one right now!
21) Any advice for fellow Endo Warriors? Despite this being an invisible illness, do not let anyone tell you your pain isn't real or isn't as intense as you say it is. There are many people out here who believe you and you can find doctors who will listen, it just might take a few more spoons than you hope.
22) What is your biggest achievement since getting Endo? Getting my master's degree and starting my own business.
23) Do you have a support network? My friends, other queer and trans folks with mast cell activation syndrome and endo, the lovely folks here, and my brother.
24) Favorite place to be? Rocky Mountains, Norway
25) Is there a side effect you didn't expect? Allodynia
26) Do you know what stage of Endo you have? Stage 4
27) What I wish people understood about Endo? That it can be disabling and cause much more than painful cramps.
2😎 What cheers you up? Watching sitcoms or stand-up comedy, reading, walking in nature, time spent with good friends.
29) Do you find it challenging to advocate for yourself? At first, definitely, but I've gotten better as the years have passed.
30) Random thing about yourself: I rappelled off of a 70-foot cliff in Belgium.
Thanks Ray! This was fun.
- ah just seeing this one! I want to join in!
1) Your name: Kimberli
2) How long have you had Endometriosis: I suspect since I got my period at age 11.
3) How long have you been diagnosed with Endo for? Officially diagnosed 5 years ago.
4) How did you finally get diagnosed? I had become so sick, throwing up daily, not eating, yet gaining a huge amount of weight. Constantly looked puffy and just like crap. After numerous doctors telling me I was crazy and fine, I found a GYN at a hospital in the city near me and begged him. Told him I was not leaving until he agreed to perform surgery to diagnosis me officially. I knew he wasn't skilled enough to actually perform excision surgery and remove it all, but I didn't care at that point. I just wanted to the diagnosis to prove I wasn't crazy, and I did have something going on.
5) What are your main symptoms: Bloat, oh my gosh the bloat. Inflammation, GI issues (constipation, tummy pain, food issues), horrible mood swings, pelvic pain, ovary pain on both sides, rectum pain, pressure on my bladder + bowels, fatigue, painful sex.
6) What medications/treatments do you use: I don't. I took birth control for years and finally stopped almost 2 years ago. Pain killers don't help me and in fact, I don't find any medications do. For me, really watching what I eat, moving my body (light walking) really help me more than anything.
7) What are some hobbies/interests you have: I love creating. This could be, photography, making jewelry, wood projects. I also love traveling, singing, dancing, listening to music, cooking/baking and writing.
8 ) How many surgeries have you had: 3 surgeries
9) What three words would you use to describe Endo: Painfully annoying inconvenience.
10) Do you have any distractions? My work, my husband, my fur babes, music, yoga and meditation.
11) What Endo myth do you dislike the most? Just get pregnant, you will feel better. It's just a bad period. Just get a hysterectomy it will cure you.
12) Do you have other illnesses? IC, PCOS, FIBRO and suspected Adeno.
13) Has there been a positive thing about having Endo? Yep! It has brought me to this amazing community and I have met so many amazing people. People who are not my best friend. People from all over the world. Also, because of endometriosis, it brought me on my current career path and I couldn't be any more thankful.
14) Is there anything you have learned from Endo? That I am one strong cookie. That I needed to start sticking up for myself and speaking out more. And also, that talking about poop, is no longer an embarrassing topic.
15) At this very moment, how are you? I can't complain. But the bloat is just constantly horrible. Mentally, I am struggling though too.
16) What are you thankful/grateful for? My family and their support always. My husband loving me no matter what. My sweet friends I have made along the way. My business. This community!
17) Are you inspired by anyone? Gosh yes, but too many to list. Many of them are right in this endo community.
18 ) When you were first diagnosed, where did you get your Endo info from? My aunt. I found out all three of my aunts had endometriosis. I also did a lot of Google researching and found some Instagram accounts.
19) Do you have any comforts? My weighted blanket, soft light PJs, baking a sweet treat.
20) Do you have any inspirational quotes? "And one day she discovered that she was fierce and strong, and full of fire, and that not even she could hold herself back because her passion burned brighter than her fears."
21) Any advice for fellow Endo Warroris? You are more than your illness. Don't give up fighting for answers, for relief, for what you want and need.
22) What is your biggest achievement since getting Endo? I started my own business.
23) Do you have a support network? My mom, dad, husband. And of course some social media friends.
24) Favorite place to be? Our beautiful downtown, Savannah.
25) Is there a side effect you didn't expect? Rectum pain.
26) Do you know what stage of Endo you have? They are always on the fence whether it is State 2 or 3. I am leaning more with 3.
27) What I wish people understood about Endo? How painful this illness really is.
28 ) What cheers you up? Music- mostly from the 90s- early 2000s.
29) Do you find it challenging to advocate for yourself: Not anymore!
30) Random thing about yourself: I am a total introvert but still love meeting new people.
