An absolute shit of a disease.
A condition that turns the lives of some women upside down. “It’s just bad period pain”. “It’s normal”. No, uneducated people. It’s not.
It’s a seriously debilitating condition affecting more than 176 MILLION women around the world.
For some, it means horrendous period pain. For others, shitty bowels and bloated bellies and zero energy. And sadly, for many, it means a big fat struggle to conceive a much wanted child.
Diagnosis can take up to 10 years for some women. How f*cked up is that?
Tune into @insightsbs on Tuesday night this week, and learn more about how this disease is affecting our sisters and girlfriends and daughters, and find out about help that’s out there.
If endo is giving you issues with your bowels, or making sex painful, Pelvic Floor Physio can help.
Shoot us a DM or get in touch if you’ve got questions. Don’t put up with it, ladies.
This 📷 of another prick of a thing is by @ember.ivory
Admiring the beautiful views of Conwy waiting for my husband to finish the half marathon ❤️
Sitting on my own with a little tear in my eyes. Full of emotions lately and feeling very proud of my husband ❤️
I’m not pregnant I have #endometriosis sometimes I swell up and look like I’m about to give birth. But maybe instead of judging me you could sympathise for all the pain I go through on a month to month basis. All the days I miss work due to debilitating pain or anxiety or the horrendous headaches I suffer with. The life I live is not the life I want to be living. Life can truly suck sometimes. #endobelly#endometriosisawareness
Day 4: How have your family and friends reacted? I have really not got many friends but they are supportive! My family is very supportive and sad that I have to go through stuff, it affects my Mum the most as she hates seeing me upset or unwell when I’m home, but they’re all amazing and super supportive and I couldn’t be more thankful. My partner however is amazing! We recently moved cities together and are now living together and he is so supportive of everything which is really amazing, so happy and he helps me so much with things and is supporting me until I find a job and pays for things I can’t afford for my healthcare when needed which is awesome. Overall I have a very supportive group of people around me and I’m very lucky
Surgery Tips 🔪
Have had a few messages from lovely ladies wanting to know how to deal with laparoscopy surgeries.
My tips : • pre operation - day before
Have some prunes, pear juice, movicol • Get an electric heat pack, it will be your best friend. • Hydration, you will need something like hydrolyte to help your body get balanced again. • Keep your pain medication up, have paracetamol as a base. • Get up and move around as soon as you can it will help with the shoulder tip pain. • Peppermint tea will help your body get rid of the gases.
Sorry for the radio silence recently; I’ve been trying to take some time to relax and bring myself out of the rut I seemed to find myself in.
I’ve had yet MORE doctors appointments; with more scans and blood tests - I’ve been given the all clear to stay away from the hospital unless the pain worsens. Which I’ve strangely got mixed feelings about. I’m so happy that my evenings don’t consist of the 1 hour round trip journey to the hospital, but I’m still not 100% pain free; I guess that’s something I’ll have to get used to.
However since my operation; I’ve been putting together something special for all you lovely ladies! Please keep yours eyes peeled in the next few weeks, because if anyone deserves a treat; it’s you 💛.
Thanks so much for sharing @aj.eris! Hope the surgery went well. 💖✨🥄✨💖
My gorgeous pins came in!!! Oh and yes, I did my nails yesterday so there they are 😂 but seriously, try to take a straight pic with pins, I dare you!
Sorry, I haven’t been really cooking much, nausea is still very much on, but got some health update!
So on Monday I had a meeting with my endo specialist. I was really stressed about it.. It was my first appointment after my exploratory laparoscopic surgery in February. Aaand I found out I need a excision surgery.
I was worried, but more... I was relieved. Relieved they can try to do something about it. Since the surgery, the pain got worse, it was basically everyday pain + sciatica + unbearable cramps. So the fact they will try to fix me, feels good. But you know, IT IS SURGERY, so the risk is quite big, it won’t be a day in&out surgery, it will be couple of days in the hospital, and 4-6 minimum weeks of recovery. And they can’t even assure me it will help. They will do their best, but with endo you never fucking know. So.. that’s sucks.. Well, at least I finally found out where my endo is, and what they are planning to do with it. The doc said all my symptoms match the location of endo which is a bit on the uterus under the bladder, ureter ligament and there is a lot of in Douglas pouch, like a lot, A LOT. Soo.. They said there is a risk damaging the bladder or the bowel which sounds fantastic 🙄
So yeah… I’m stressed about the surgery but a bit relieved they will try to cut it out!
Anyway, I got myself gorgeous pins, and they are just amazing! Earned a spot on my jacket ❤️ Made me feel so much better after I got them, especially cuz I’m on my worst 2nd day flare up after my appointment.
Having a condition that is so under diagnosed, misunderstood and debilitating, it's hard not to turn to the internet and support groups for information and general support. It can be comforting speaking to others that understand how you may be feeling, particularly in a world that feels so isolating. ⭐️ The other side is the anxious reading of others stories where their operation didn't work or they are infertile etc. I don't consider myself to have health anxiety but the danger of relating to others and their symptoms is believing their unfortunate and sad journey could be your fate, now that's scary. ⭐️ I'm realising that those people sharing stories and problems online are those that are suffering and those that aren't probably aren't actually on the web writing about how much better they are. I put up a post in a support group asking for success stories or reduction in symptoms... I got ONE reply. However if you put up a post about your symptoms and how awful they are, you can get around THIRTY replies 😐.⭐️ Noticing the effects of a support group on my own wellbeing has been very insightful. I need to remember to unplug that little bit more when I feel unwell, upset or generally trying to reassure my anxieties about my health 🙌🏼❌📱💻 #unplug#switchoff#supportgroups#health#wellbeing#chronicillness#endometriosis#endo#endometriosisawareness#mindful#livemoreofftheinternet#internetswitchoff#anxiety#isolation#worry#healthanxiety#stepback#knowwhenitsunhelpful#reminder#putthephonedown
When there are trials there are always blessings that come after and they may not be the blessing we want but always what we need. When I was in London my endo started getting worse since July and hasn’t settled since. I get stressed when I can’t work, because of all the health stuff I got I need money to support my dietary needs, meds, emergency needs etc. I’m always honest when applying for jobs about my health problems because it actually freaks me out being put in a position where I’m alone and people don’t know what I have or how to help me, and 9 times out of ten no one knows lol I may even get a job but the uniform is too tight for my stomach, then comes bloating, so you’ll always catch me in tights or a baggy something lol so then I don’t take the job and unfortunately I am physically unable to adapt to the standards and expectations in certain work environments. I’m not currently working but this week has been sooo hard health wise and I’ve had extreme weakness, it’s a package deal. It’s hard to see this as a blessing but imagine if I WAS working?! I’d be so much worse! I’m grateful god understands my needs and still blessed and provides me with what I need ❤️ and even though this girl doesn’t know me, @allaboutannieblog a big ups to you for the support you give to other girls who go through what we do! It’s nice to know someone else gets it xx
Yes, I talk about endometriosis a lot.
Yes, it’s a part of my life. A huge ass part.
But, one thing I don’t really talk about is my mental health.
My whole life, I’ve been an anxious person. A “worry wart” as my mother calls me.
But, when my pain started, so did my depression. As doctors told the pain was in my head, it got worse.
Dealing with the mood swings, the crying over everything, and having no will to go to swim practice or hang out with friends. It became too much for my mom.
At the age of 16, after multiple suicidal thoughts and a few attempts I got diagnosed with major depressive disorder, generalized anxiety disorder, and panic disorder.
I’ve been on 5 different antidepressants and multiple anxiety medicines that have just finally started to work.
When people think about #chronicillness and #chronicpain they think about the physical pain. But never the mental pain and how it affects your mental health.
Day 2: Get rid of a limiting belief that you have about yourself or your abilities.
I am going to try and stop thinking I never meet anyone’s expectations, or making myself believe there is such expectations.
These preconceived expectations almost always lead me to a feeling of failure or exhaustion after pushing myself further than I was capable.
I do believe in having goals, but I need to stop proposing goals that are beyond reasonable.
On bad flare up days, goals that I struggle to complete can be as simple as showering or changing my clothes - no wonder I feel upset when I didn’t do the washing or get the groceries.
New Blog Post! Link in bio. “The Third Shift” explores and acknowledges the challenges of balancing the management of chronic disease with the rest of your life. The term was coined by sociologist Dr Kate Seear, to describe becoming an expert in ones management of endometriosis care as an additional form of unpaid labour, in addition to the unpaid domestic labour already more heavily shouldered by women. You are not alone, share this work with your endo sisters - and remember that QENDO and their support line are always there to help on 3321 4408 💕#qendo#blog#linkinbio#adenomyosis#endometriosis#adenomyosisawareness#endometriosisawareness#pelvicpain#spoonie
Thanks to your generous donations on the door yesterday we raised $351.70 for @endometriosisaustralia which will go towards much needed research into this diseases that affects 1-in-10 Australian women, many who don’t know they have it!
Painful menstrual cycles aren’t normal - if you suffer with them please see your doctor or gynaecologist! #endometriosis#endometriosisawareness
2018: the year of crying uncontrollably for no reason, or dumb reasons. I thought I was going crazy or had anxiety- turns out it’s ALL related to my two surgeries this year, and disease removal along with (sorry men), a lot of work done to my ovaries which “shocks” them and causes my hormones to be not stable. Makes so much sense and still is mind blowing! If you see me, or even if you’re just texting me and I don’t seem like myself, I might not be ;). It’s getting better every day but hopefully in a couple months I’ll be back to normal! The human body is so complex and interesting! #endometriosisawareness
Change is coming. So grateful to have these amazing human beings in my life. For 10 years I have struggled alone. I didn’t know anyone until a year ago with endometriosis. Now I’ve so many friends with endometriosis. I am grateful to have @bekkhelen @mandamandalouise @carlamcressy it was also a pleasure to meet the best endometriosis specialist in the world Nezhat. Excuse my casual look I am in a lot of pain so it was difficult to dress up. Had an amazing evening. It was really worth travelling to Birmingham and back. Love working with these people to make change. We do so much in the background that people don’t know about. Hard work and dedication together is the only way change will happen. It’s amazing how many friendships can be made through something so horrible. Absolute pleasure tonight and so grateful for the flowers. Thank you @womenwithendometriosis #endo#endometriosis#endometriosisawareness#change#awareness#support
Trying to treat endometriosis feels like trying to put together a puzzle you can't see. 💛
I called my obgyn doctor because of how this new birth control is making my pain worse and causing cysts to burst. She said that I can't get an appointment any earlier and have to wait until December 3rd. She wants to talk to me about trying Lupron before surgery. That's not really an option I'm ready for yet. She said that laparscopic surgery is invasive and that's why she doesn't want to do surgery on me. Well, endometriosis is invasive of my life.😩 💛
I want to try surgery first. The statistics show how excision surgery can have long term relief and lower rates of endo recurrance. If after surgery endo is still affecting me the same as before, I'll try the Mirena. And if that doesn't help, then Lupron. But Lupron seems pretty risky for me, so until I've tried other things... Lupron is not my first option. -
“It Will Take More Than This To Stop Me!” Our Endo Champion shares her extraordinary story on @insightsbs this Tuesday! 💛 Shadae Boylan is a student helicopter pilot, station hand & A.I. technician, who spends her long days rearing and rounding cattle in Kununurra, Western Australia. Her incredible journey details how stigma and social conditioning can lead to suffering in silence… with pain that she likens to a fractured pelvis from a horse kick! 😳
READ HER BLOG ON OUR WEBSITE VIA BIO/STORY
We are grateful for the incredible courage of our Endo Champion, Shadae Boylan, for showing such resilience in the face of adversity and for sharing her confronting experiences break the stigma and social conditioning so we can finally #endthesilenceonendo
Don’t miss Shadae's story on this weeks episode of INSIGHT on SBS!
The program will air at 8:30pm AEDT Tuesday 20th November 2018 and you can:
• Watch the TV episode live on SBS
• Join the live stream LINK IN BIO
• Watch at a later date on SBS On Demand
@shadaeboylan @katepascoesquires @tonymsquires @avzammit @drmikeoz @monicaforlano @donna_ciccia @melgreig_
Since being diagnosed with #endometriosis I’ve found a lot of my strength in Yoga.
It’s taught me more about myself than I ever thought possible.
On those days where my soul was weak, my body was sore and my mind was telling me ‘you’ve failed’
Yoga taught me that I had indeed not failed, a hand stand has shown me inner strength, inner stillness and self love.
It’s on my weakest days that I find my greatest Power 💛
If you would like to follow more of my yogi journey, head over to @buddhafulkiwi 💕
Please share and follow this page to spread awareness of endometriosis.
Endometriosis is a condition where the tissue that lines the womb (endometrium) is found outside the womb, such as in the ovaries and fallopian tubes.
Endometriosis affects 1 in 10 women and it needs to be more widely known. It’s also affects a very close friend of mine.
Been super quiet recently - I’ve had my wisdom teeth out so mainly been taking painkillers and feeling sorry for myself 😬🤭
I’ve stuck to the endo diet and found that tomatoes give me spots and dairy also contributes to that.. I’m happy to just minimize eating these and to pretty much avoid them in the home ☺️
For me, I seems like a clean diet works a treat but isn’t conducive to me enjoying socializing 😜 so I will ease up in these moments and be better at home 🏡 .
**Confession* I have never listened to a podcast before. I am so glad this was my first. 💛 A big goal for me with this account is to be equally inclusive to everyone with Endometriosis. I've been researching ways beyond just not using "hey ladies" exclusively, or "Endo sisters" and I found this podcast. Please, give this a listen. Even if it takes a few pause sessions, check it out. It's informative, inspiring, educational, and also really raw, personal, and could possibly be trigger inducing for some, but I am so glad this exists. Thank you so much @cori5mith for sharing your story, giving us a different perspective on this disease and helping to educate so many and @this_endolife for so eloquently asking questions we should all be asking and helping to educate so many as well.*
• • • • •
This EndoLife Podcast Episode 21 with @cori5mith is here! In this episode I’m talking to Cori about his experience of endometriosis as a trans man and how we can make the endometriosis community a safer, more supportive place for transgender and non-binary people and others who do not identify as cisfemale with endometriosis.
Cori has endometriosis and his story of how he was treated as a women vs how he was treated as a trans man is shocking, but so important to talk about and raise awareness of.
Cori is doing incredible and courageous work for our community. It was an absolute honour to speak with him, and I really hope you find it an enlightening episode! 💛
Head to my bio to listen or go directly to your podcast app.