Truths I wish I knew earlier about endometriosis

Hi everyone! I hope you’re doing well and are having a flare-free day. In an endometriosis journey, there is often a lot of information thrown at us - making it hard to sift through what is true or false.
Todays video is all about truths that I wish I knew earlier in my endometriosis journey. These are sometimes hard truths to swallow - but it’s important to have information and lived experience to help guide us throughout the hard parts of a chronic illness. I hope that these truths help you in your journey 🌙
Feel free to comment any truths that you’ve come across in your chronic illness journey - I’m sure that they will help someone else find answers in theirs.
As always, if you have new or changing pains / symptoms - always talk with your doctor or practitioner to gain support and medical advice 🤍
Discount code for Saalt (period underwear and menstrual cups): www.saalt.com/...
*disclaimer - I do receive a small commission based on sales with this link.
#endometriosis #endometriosisawareness #chronicdisease #endo #endometriosisfacts #endometriosiswarrior #endojourney #endometriosistreatment
Medical Disclaimer
The content shared on Endoemmm is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read or seen on this channel. Information about chronic illnesses like endometriosis is constantly evolving, and the content shared here may not reflect the most up-to-date research or medical guidelines. Please consult a healthcare professional for the most current information tailored to your specific needs.
Research Disclaimer
The information provided on Endoemmm is based on personal experience, available research, and publicly accessible resources at the time of creation. However, medical knowledge and research are continually advancing, and older content may not reflect the latest evidence or medical standards. Viewers are encouraged to verify any information and consult up-to-date sources or medical professionals for the most accurate and relevant insights into endometriosis and related conditions. Endoemmm does not claim to offer exhaustive or definitive guidance on medical or scientific topics.

[@lisahorsfall-buckley2838]

My surgery is booked for the end of this month. I am so scared that they won't find anything, and that the pain is all in my head. My OBGYN hasn't been very holistic in her approach, and because I have had very little relief from the IUD she suggested, she has already prepared me to find out that my pain will not be rooted in endo. I used to work in healthcare, and I am certain my symptoms match most of what others describe - but have been gaslit by doctors for so many years, I am expecting to go through all the pain and risk of surgery only to be told - there's nothing there. It's so scary being in this position, but I have to have the lap or I will never be any further on! Thanks so much for sharing your Storie, everyone. It is vital we stick together x

[@mariiazatorska]

I'm crying, how amazing it is that you are sharing this. I'm so grateful ❤ I was lucky to be diagnosed with huge endometrioma in just 8 hours (in ER) and I'm on my second week of processing the idea that I had endo all this time (since my first period I couldn't walk from the pain). My deepest regret is that I perceived my pain as "normal" that I accepted it and even that it caused me to change profession, lifestyle, it influenced my social life, and still I didn't seek for any solutions apart from diet/lifestyle changes. Thanks again, the work you are doing is very important. We need to talk more about it, and support each other.

[@jajasalvador]

I really hope the medical system do more research and study about endo.. The pain was unbearable, its hard to think how to live with endo..

[@Lilyinthevalley1]

Thank you so much for your support. I definitely will start advocating for myself. My symptoms are beyond aggressive, especially with the leg pain and during cycle-cramps! I don’t wanna get outta bed 1-2 weeks a month. This is not a good quality life to live. I have an appointment in two days! I’m so ready to tackle this! Thanks again for all the content. 😊

[@pinkwheels1313]

Thank you for your channel. You are very articulate and have a lovely way of presenting the information in a sincere and friendly way. I wish you well in your ongoing endo journey and life as a mum. ❤ As i say, thanks for being open with us about your own experiences. It's brave and very helpful.

[@Calcifurr]

I’ve been watching your videos for the past 3 months. I’m currently 28 years old. I’ve always had terrible menstrual cramps that would make me miss school or work. I’ve always thought I was just unlucky. I went to the doctors when I was 21, because I had such a terrible period that month that I was screaming in pain and crying. I was told by the nurse practitioner that I just need to get on birth control. Well, I didn’t. I continued to live like this as surprisingly my menstrual cramps progressively got better with age to the point of tolerance. It was not until this January that I started to experience painful intercourse and debilitating cramps again. The pain was so bad I couldn’t walk for an entire day. I knew something was wrong so I went into my doctors. All he did was refer me out to a gynecologist who couldn’t figure out my problems. It wasn’t until I did more research that I started advocating for myself and explaining that I may have endometriosis. It’s been 3 months since this severe pain has come and I’ve been in the ER twice and urgent care 3-4 times. All they tell me is that I have a right ovarian cyst with small free pelvic fluid. I’ve been referred out to a specialist, but I’ve heard he’s a terrible doctor who just prescribes more birth control. On top of that the wait to see him is 2-3 months out. The problem is my pain has progressively gotten worse and has become chronic and an every day issue despite my period. I’m fatigued, have brain fog, exhausted, and now have abdominal pain on top of my pelvic pain. I also have small nodules that I believe are lymph nodes on my right pelvic region. They are swollen and painful to press down on. At this point I don’t know what to do but wait in painful silence.

[@HrammBabamm]

Это вполне могут быть лимфоузлы в тазовой области, неудивительно. Свободная тазовая жидкость это по сути и есть лимфа, воспалительный экссудат. Проблема в том, что из неё потом образуются спайки. Почему она появляется? Очевидно из-за сильного воспаления

[@HrammBabamm]

Попробуйте патчи с касторовым маслом на ночь на них живота. Измените питание, откажитесь от сахара, молока, глютена и кофе. Высыпайтесь. Это начальная база, которая вам поможет скорректировать состояние. Но это далеко не все

[@jenniferyoder6202]

I’m so sorry! I’m 💯 sure you have endometriosis. I would recommend surgery with an endometriosis specialist. Dr. Sinervo in Georgia is incredible and has good statistics!! Blessings on your journey! There is hope!❤️

[@itscarolinemary]

You should go to your dr and mention the debilitating pain and nodes/cysts you mentioned! 🫶💕 sending my best wishes your way.

[@KalpanaDevi-id2ff]

It's been one month, how are you now ? Do you underwent any surgery?

[@catturner23]

Thank you for making this! Always on birth control pills (since 16) or an IUD (after my two kids), I never knew I had it. While trying for my last baby at 42, I knew I had Endo belly. I was walking around everyday thinking I looked pregnant, but I wasn't. I swore I had it. I talked to my Dr. at the time I got out my last IUD, and was having lots of pain, that I couldn't have had Endo bc I would have known I had it early on. So, I believed her. In the back of mind, I knew I had it. So please, please....get those first, second, third or 100 opinions until someone takes you seriously. You are not crazy and it's not all in your head. Maybe it's not Endo, but maybe it's something else you have. Doesn't matter, get someone to listen and help you.

[@taymicastro2749]

When you mentioned brain fog it literally blows my mind,😢me every day ,beside fatigue,pain ,nausea ,bladder pain ,urge to pee ,back and leg pin all of the above ⬆️

[@wanderlust_101]

same here! I am starting to think I am probably crazy! All the pain and fatigue that my doctor cannot explain.

[@taymicastro2749]

@@wanderlust_101 very sorry to hear that ,I had my surgery October 11,2024 I’m now recovering from it ,Exploratory Laparoscopic with hysteroscopy and cystoscopy hydrodistention ,so my diagnostic is Endometriosis both ovarie and uterus,Adenomyosis with IC/BPS I had all 🥹🥹🥹 ,that explained my fatigue and all the pain that I had been willing every day of my life ,let see how I feel about it after .But I’ll pray for you .

[@shelahlalah8331]

I have regular periods, and aside from a bit of discomfort on the 1st day, i don't have dysmenorrhea. It's crazy that they saw endometrioma in me 4 yrs ago (during covid). I didn't get a follow up until last week and it transformed my left ovary to 9cm. I need to have my ovary removed now. And still, I just had my normal period with no pain last week. I'm thankful I did not experience the pain like other endo patients have, but I only hope my ovary can sustain the endo until 3rd week of Nov when I will sched my surgery.

[@katefbrose]

I just drove 3 hours to a doctor who said "have you thought about getting pregnant? It will stop your pain for up to two years." I thought he was joking. I am not ready to have kids and not willing to have kids just so I can stop pain for a couple of years. I am looking for a doctor who cares about my longterm health and it has been difficult to find. He suggested I may have endometriosis because my ultrasound came back normal so I guess that rules out fibroids and cysts. My symptoms are debilitating cramps and brain fog and I just got my first ever ocular migraine last month not sure if that is related symptom. My pain started 3 years ago give or take and I am just confused with what has changed. I just turned 30 and my periods are progressively getting worse and worse. One time I almost had to drive to the ER because I couldn't get off the floor. I am hoping if I can change my diet or take the right supplements it will help but I am just so lost. not sure if I should get specialized lap excision surgery or not. I found one great doctor that specializes in excision lap surgery who is in network and doesn't use the ablation technique, but of course the hospital is out of network. I am really lost.... where does one even start?

[@sleepingbeauty2933]

Took 20 years for me to get diagnosed with endometriosis. Hopefull tough to cure it with food and lifestyle changes ❤️

[@itscarolinemary]

I have yet to get an ultrasound or the surgery but I always fear I won't have endo despite having consistently painful periods since they started at age 10 or so, grade 5 💕🙁 I'm at the point now where it's really hard to have the energy to work a full day on the 1st-2nd day with such debilitating cramps. I also deal with a lot of anxiety and discomfort when it's heavy and I have to be in public and dealing with it. I'm grateful for period cups though ❤️‍🔥 they help a ton. I also can't go without heat or midol to ease the cramps. It's interesting and scary that it's a full body disease.. makes me wonder about other pains/sensations in my body 🥺

[@KeKsA]

I wish I'd known that to have a painful period is not normal. I have been told so many times and by so many doctors that it is just the way it is or been asked was your mum in pain? Yes she was, then in that case you are one of the unlucky ones. I used to be very upset with this response as I thought there is nothing that can help me. And I kind of blame the doctors for it because it went so far that I have struggled and still am to get pregnant after 3 years of trying.. I believe if this would have been picked up by the doctors I wouldn't need to struggle nor undergo the surgery but yeah. I wish I would have known to feel the pain isn't normal and everyone who does should push it for it to be investigated!!

[@sanamlee816]

I had constipation 8 days when I went for the check-ups. I dinosed with endometriosis

[@ema-b1h]

agree with all of that and also i wish i knew how about the endo research and it can develop very fast from viral sickness, from only bad period i went to full chronic every week pain after long co**d just by few months to a year, and that again after vaccine . i feel bad i didnt know i should be on top with the vaccine also the dr didnt told me. and to see the right sr specialist and other right medical profession.