1 day ago
I just have a question based on birth contol?
My belief is it can help relieve symptoms in some cases but i just had my gp tell my 15 year old daughter that it can stop or slow down growth. Could someone shed some light on this for me please? ... See MoreSee Less
Hi Aletha - Syls dr told us the same thing. Please will you look at Syls video in our 2nd conference “just go have a baby” I’ll pm you the link.
2 days ago
Changing the way I eat has made such an enormous impact on my gut health, my endo pain, the horrendous bloating I used to endure and so much more. Going gluten free and mostly sticking to an anti inflammatory diet and drinking A LOT more water were all game changers for me personally.
Have dietary changes made any difference to the way you feel?
What changes have you made? What differences, if any, have you noticed?
#glutenfree #antiinflammatory #diet #food #guthealth #gut #endo #chronicpain #chronicillness #probiotics #endometriosis ... See MoreSee Less
I tried everything I could including FODMAPS, keto, paleo and others. Nothing made a difference to my symptoms or my pain levels and some of them left me low in necessary vitamins & minerals stores. I now eat what I want, when I want - a healthy, balanced diet with treats when I want them. The only things that I exclude from my diet are things that I have sensitivities to (not related to endometriosis). The best results I've ever had was from having surgery with an endometriosis excision specialist where my endometriosis and endometriomas were removed and seeing a physiotherapist for my pelvic floor.
hey syl! do u have any cook book recommendations for an anti-inflammatory diet? i can't tolerate many foods atm not sure if its my endometriosis or my IBD. I cut alcohol, soy, meat and dairy out of my life ages ago and that really helped with my endo pain but finding it hard to tolerate many other foods atm!
ATP science have changed my life, gutright and alpha Venus have definitely helped me with everything... listen to their pod casts they are really amazing with endo... I was at breaking point and now I am overwhelmed with how I am feeling...
Does anyone have any info on anti-inflammatory diets and foods? As well as inflammatory foods? I’m struggling with this - I am gluten free but I still having a lot of issues
I'm doing low fodmap at the moment under the supervision of a dietitian, and it's definitely making a change already! I do really miss garlic and onion though.
Since adding my nutrition program I’ve improved heaps. Adding aloe Vera into my daily water intake has been so helpful. If anyone would like some info on the products I consume please message. Endo sucks.
I recently made some changes to my diet and have seen a huge reduction in pain. It definitely makes me think there is a bigger link with diet than anyone has researched. My triggers were simple carbs (potatoes; bread - not including proper sourdough which seems to be fine; rice; pizza; red meat and the biggie.... alcohol!) I even notice 1 drink now will ensure I get pain that evening regardless of where I am in my cycle. Interestingly I've added coffee (only 1 per day) since my symptoms started reducing. About 6 months on this diet I'm now only getting mild pain that nurofen will fix for 2 days a month after being in constant pain 24 hours a day. Off all birth control as well so no added hormones in my system.
I saw a dietitian but I didn’t like being restricted. I am now eating what I want but in moderation and so I am keeping track of what I eat now. I will cut down on the foods if it gives me pain. need to drink more water and cut down on carb and processed foods. I need to eat more vegetables too.
I've tried a number of sugar/wheat/meat/alcohol free detoxes when I was at peak pain and it definitely helped. Now that my pain is pretty well managed I've found that exercising regularly and reducing my portions/watching calories makes a huge difference. Also I don't drink nearly as much as I used to which has to have had an impact.
There are books online from overseas about what you should not eat. I bought these and followed them and symptoms improved greatly. Worthwhile googling to find them.
I became vegetarian, still had issues. When I cut out all dairy etc and became vegan the inflammation disappeared completely. My specialist was really glad I made the change
It effects everything- even 6 years after hysterectomy I’m struggling with gut issues
I haven’t been able to give up coffee but I don’t eat gluten, soy etc. I miss wine so much but have only been tipsy once in the past few months. It’s so hard!!!
I have issues giving up nightshades. I'm vegie fodmap but growing up on a medittarian diet makes it hard to not eat capsicums and tomato's and so forth
I found cutting out soy, was a game changer for me, I’m lactose intolerant so find a replacement took some time. Now on almond milk and haven’t experienced the same pain I had when on soy
Gluten, dairy, soy, alcohol, red meat etc etc. Hugggge reduction in pain and symptoms. Have kept caffeine in though in moderation.
I bought the endo diet and pelvic pain book (from book depository), which has a lot of information about diet and impact on endo, as well as a lot of anti inflammatory reciepies. I found alcohol, sugar and bread can play a big part in my flare ups so trying to minimize that helps !!
100% 100%! And No Alcohol...it was the last to go but the most benefit of all the things I cut out. And sugar...omg the improvements from dropping down to one little treat cake per weekend is tremendous. The first thing i cut out years ago, as an experiment in reducing my pain, was red meat. That was an eye opening experience-big reduction. So YES I’m a big believer in dietary foundations for quality of life.
Cutting down gluten, trying to minimise processed sugars, soft drinks. If I have a diet blow out and eat lots of junk my pain is terrible
Massive changes from diet in terms of control of symptoms. Reduction in caffeine, hardly any alcohol, gluten free (but not replacing with crappy gluten free bread that has preservatives etc), low sugar and not many refined foods.
My endometriosis and having my gallbladder out has screwed my belly up somuch that i lost 20kg
Going meat and soy free ha made an incredible difference and consuming turmeric. I’m thinking gluten and dairy may have to go eventually too
I found it helpful for bloating, but no difference to pain. That said, I didn't keep it up for long due to high cost and time consumption for meal prep.
It has helped about 80% changing my diet!
Lindsey Kemp u think I make this shit up
2 days ago
Hi all, sorry to ask here, but my specialist put me on endep, to help with my endo and said it would help my constant headaches too, I’ve only been on it about three weeks now, and I’ve missed two weeks of work cause I’ve had the worst headaches and migraines. I go back for follow up soon and I’m considering asking to be taken off it if these don’t go away, they’re killing my life, but was wondering did anyone else have this? If you did, did it go away if you pushed through? Am I just being a princess? ... See MoreSee Less
3 days ago
Gorgeous girls!!!! 💖💖lucky me!!! I know you both & love you too💖💖
You gals rock 🤘
Amy McPhail this is s great group George was going to be interviewed by Syls mum last year but it didn’t workout. Great support page
Hey EndoActivists, I'm a finalist for Cosmopolitan Australia's Women of the Year Awards 2018! #WOTY ❤
You'll find me in the 'Game Changer of the Year' category 🙂
It would be so wonderful to have your votes and support and whatever happens, I'm incredibly proud to have EndoActive's hard work recognised by the iconic Cosmo.
We have achieved so much in just 4 years and we couldn't have done it without you cheering us on. Much of our success, we owe to you - our dedicated EndoActivists. THANK YOU !!!!! We just adore this magnificent community we've built together and take inspiration from you all every day. ❤
Head here to vote!
- You have to vote for one woman in each of the 10 categories.
- Vote as much as you can (you can vote 3 times I think? or more?)
Love, Syl ❤ ❤ ❤ MWA! ... See MoreSee Less
Done!! What a year! Good luck!
Done! Fingers crossed!!
Done with pleasure
Voted! Good luck!
Absolutely, done xo
You do such a wonderful job! Voting is done! All the best Syl, you deserve it 💛
this is amazing!! well done
Done 😊. Wishing you all the best.
Well done you! & Done ✅ x
Done... all the best xx
Done you sooo deserve this! Thank you for fighting for us xx
Amazing! Well done.. AGAIN!! X
Done. Very well deserved Syl, fingers crossed you win 🤞🤞
With all you have done you definitely deserve it. Xx
Voted 🙂 What's with the categories though? The first two were the only worthy ones!
Done 😊 you are a legend.
Good luck hope you win
Good luck. Very much WELL DESERVED. 🎗💛
If you're a woman aged 14-25, here's an opportunity to be involved in some research. This is from Dr Mike Armour:
"Researchers at NICM Health Research Institute (NICM), School of Science and Health and the School of Education at Western Sydney University are hoping to change the way young women think about, and deal with their periods.
Research shows that women often suffer with pain and other painful symptoms for years before presenting to their doctor for treatment. We think that the ‘normalising’ of pain and other symptoms is a big part of this delay.
We are currently running a study using a web-based resource that you can use on your phone, tablet or computer.
The aim of this resource is to give young women a better understanding of what’s ‘normal’ and what’s not, and how they can reduce the impact of their menstrual symptoms through self-care.
To help with this we are using a screening tool developed by the Canberra Endometriosis Centre (called PIPPA) to help guide women to their doctor if they show symptoms that put them at high risk of endometriosis.
We are also providing a wealth of self-care information including diet, yoga, heat and acupressure for those women who have more mild symptoms, so that they may be able to help manage their symptoms better.
We are currently looking for young women, aged 14-25 who live in Australia to take part in this study.
If you or anyone you know would be interested then go here to find out more:
- END - ... See MoreSee Less
Thanks Syl and Lesley. Just an really important note - this for all young women (14-25), not just those with a diagnosis of endo 🙂
Wish I lived in Aus! There needs to be a Canadian survey like this
Shame it's only women 14-25
Peta Jones Paris Mondolo
Karen for M
Thanks babes. Shared.
Kira Zeldin ♥️
2 weeks ago
Accidental colour co-ord. Not sure how I feel about it 😕
What a crazy week or so it’s been. I’m finally back in my office working on my thesis after 3 weeks at home sick - first with savage pinkeye aka viral conjunctivitis in both eyes, followed by a week of #endo pain flare up, which coincided with 3 weeks of mild to severe fatigue, 3 cold sore flare ups, migraines, extreme puffy face, first ever outbreak of Perioral Dermatitis, swollen boob glands that are SO PAINFUL!, 1.5 weeks of inflamed tastebuds and swollen tongue to the point where I can’t talk or eat any hot food... (I’m actually laughing at myself right now. You can’t make this shit up but it sounds so ridiculously made up!!!! 😂😂)
Seriously with my immune system when it rains it FCKING POURS!!!
Since September last year, I’ve been unwell for 7 months out of 10. Writing that is actually shocking and pretty sad. I often talk about how rarely I have endo pain which is true, however it’s all those other ever-changing, ever-increasing MADE UP SOUNDING symptoms that just will not piss off for longer than a couple of months.
And that is the part I hate the most about #endometriosis. 😡😡😡
The day of the launch was such a struggle for me and on either side of it I was doing media from bed.
Hopefully my regained energy and strength sticks around a lot longer this time around!!!
Who else struggles with the very real symptoms associated with endo sounding so random and ridiculous?
#chronicpain #chronicillness #autoimmunedisease #immunesystem #endopain #chronicfatigue #nike #badhabits #mphildiaries #mphil #endoactive #nationalactionplanforendometriosis #peoplepower #womenshealth ... See MoreSee Less
This story popped up out of the blue on social media and thought you maybe interested to know even yellow wiggle EMMA Watkins suffers endometriosis. Sorry if her story has been posted before... amp.news.com.au/lifestyle/health/health-problems/yellow-wiggle-emma-watkins-to-take-time-out-from...
I developed an allergy to endone this month 🙄😫 have opted to go on zoladex for 4-6 months to get a break from the pain.... doctors tell me the only other option is to get pregnant now that pain relief isn’t an option 🤦🏻♀️ THanks for your honesty Syl, know that we are all feeling for you and are behind you and your projects, so much success even being unwell 7/10 months ❤️❤️ you’re amazing.
Literally got cold and flu like symptoms with both ovulation and menstruation for YEARS. And I’m talking the whole shebang, and once ever second winter I’d come down with something horrendous. Glandular, pneumonia, the worst stomach bug I’ve ever had after my tmj flaring up for the first time in 8 years
I’m so sorry about the past three weeks Syl. How horrible. Talking about swollen boobs, does anyone else get swollen glands under their arms and in their groin area for days on end? Oh and does anyone else experience chest sensitivity (as in sore to the touch) especially in the area between the breasts? It’s driving me nuts. It flares up at random times during the month, but mostly during ovulation and just before my periods.
Wellllll that explains a few things.... I always wonder why I’m sore or tired or I’m always sick with something or fighting something off and it really really sucks!
When I see my Dr. my opening line is usually "I know this sounds ridiculous but......", then proceed with my list of weirdness.
If random and ridiculous symptoms was a club, I’m definitely dancing to its house music. From my lap last year it’s been a downward spiral of Hashimoto’s hypothyroidism autoimmune disease, unexplained heart issues, which are at its worse this last month since my hysterectomy, not to mention pins and needles in both pinkie and ring finger on each hand. The fatigue is scary, as I now need to decide if showering daily is important or completing an overdue task instead. 💛
Wow that’s a serious list, you poor thing!!! 💕 I feel you, in that I can’t remember ever feeling 100% well; it’s always something, and not always endo. I just always feel “off”, and tired. I often think that maybe everyone feels like that but they don’t talk about it or they just get on with it, or I just have a low threshold for pain/symptoms, or they’re not as in-tune with their bodies. I’m always second guessing myself... Who knows...
Although I wish none of us felt like this and suffer so significantly, I can’t help but take some solace in the fact that I am not the only one feeling that my ever changing, always dramatic list is so ridiculous it can’t possibly be made up!!! Thanks for sharing and sending you all positive energy as you continue to fight each day
Sylv, i totally hear you & feel the daily struggle that comes with endo. I’ve been at my drs today saying I must have chronic fatigue I’m over it 👍
This has been me for the last few months, did well for a month but before that same scenario. Sometimes I just laugh at the absolute ridiculousness of it all. Hope the good feelings keep up for you!
I don’t have too many other symptoms, I do get sick a lot and have recently started having cold sore flare ups which had never happened before. But for the past 6 months I have been in absolute agony everyday and been bleeding for more than 4 months in the last 6 with only a day or two of rest from it In between. Still been waiting close to s year to even see my specialist again after my last lap surgery two years ago because they wrote me off and said it was “all good now” and I wouldn’t need to come back ☹️☹️ Luckily I have a great doctor who deals with my constant pressure to do something more proactive and helps me deal with studying and deadlines when I can’t leave bed!
I had a metallic taste in my mouth and wee that smelt like ammonia whenever I had a bad flare up. It kept getting disregarded but it was foul. When I looked into it it kept coming up with issues with kidney. I eventually got bad kidney pain. Interesting that with the Laparoscopy they found a lesion on my ureter leading to my kidney plus eight other lesions on various organs.
Cool to know someone else gets a sore tongue and swollen taste buds, so random! The list goes on including forever tired.
I feel like my daily life is full of oh today this is hurting, this is flared up, this is going on... sound like a broken record. But at least I know now it's all legit and I am not crazy. Hope you have some relief xx Edited to add: some of the symptoms are SO random and I had no idea they were related, just thought I was broken!
That is terrible.. 🤞🏼🤞🏼🤞🏼 for onwards and upwards! ☘️🌈
I know the feeling, my immunity has gotten so bad I’ve taken to wearing a mask over my face when I leave the house. It tends to stop people walking super close to me and coughing on me etc but it’s still hard to avoid everything.
Sounds exactly like my life, never healthy for more than a week.. and no-one ever believes me because "I look okay" 🙄
oh darling that sounds terrible. I've been super run down too with all sorts of joy. I hope that we both start to improve and feel better xx
I love that you're not afraid to state that all of these issues are directly related to your condition. Our condition! Thanks for making me feel sane 💛
I understand you completely. I found out that I have fibroses and endometriosis two weeks ago. However, I have been unwell for the last three years. It started when I got influenza B in America. I was shocked because I have always been very healthy. I never had any problems. I eat well. No dairy, no gluten, little sugar, and even cut animal protein last year. But I was only getting worse. I saw many doctors some very expensive. They all agreed that I was anaemic. But they have different causes for my infinite fatigue. Until I collapsed and an emergency doctor asked about my period and voila. I just want my energy back. I want live as I used to live. I feel sad many times. My mood is up and down. Now I am on the contraceptive pills because I cannot bleed. I have an appointment with an endometriosis specialist in November. I hope they can help me.
Yep i hear ya! There is always something wrong with me!
I have the tongue flare up all the time where I can't swallow properly (finally someone else who gets this also! Sorry. I know it sucks and how bad does it mess with your anxiety )and my eyes get inflamed where I have blurry vision. All linked to endo and inflammation I'm sure.
I do still even after all has been removed. The worst is the mammogram showing huge hormonal cyst and explaining that to endo specialist! Seriously thought I was an idiot until decided he must have left microscopic tissue. The “made up” symptoms are a true delight. On the positive note - you get to learn what prompts them. You have done such an amazing job and all of the endo activists. The good days are so worth it. ❤️❤️ we are a bunch of strong women which is so powerful.
Chloe Louise please follow this page. Important things happen here