I have Thoracic endometriosis. I was diagnosed four years ago in 2020. I kept having pneumothoraces in my right lung, and they could not figure out why. I finally asked my doctor if I could have anything to do with my period since my lung kept collapsing on the first day of my period. He said there was absolutely no correlation between my period and my lung collapses. Two months later, I finally found a doctor to listen to me and had surgery, and when I opened me up, I had completely covering most of my major organs. I had to remove a portion of my lung and half my diaphragm. Two months later, the lung collapses came back and now the endometriosis has spread to my lymphatic system and they believe it may be cancerous at this point I go next week for a biopsy. Doctors need to be made aware of this and never make a woman feel like she’s crazy or that it’s just anxiety! I had no fertility issues. I have five beautiful, healthy children.

I wholeheartedly understand this as I myself was diagnosed 5/years ago before that I was happy emotionally stable . Now every month I am drowned in this gut wrenching pain hoping it to pass

Watching this video for the first time. I have stage 4 endo, was confirmed in 2018 via laparoscopic diagnostic. I hate it so much, still keeping faith that one day I’ll have beautiful and healthy babies 🙏🏾❤️. I pray the same for every woman watching and that stumble across this post in search for hope one day.

thank you very much for your video! I lost my right kidney due to endometriosis. I visited three gynecologists before the third one, in shock, diagnosed a grade 4 kidney blockage. By then, the kidney was beyond saving.

I know exactly what you talking about, I was 18 when I fond this angel doctor and she fond I have endometriosis, she started the treatment straight away, I have been in pain for just 3 years, then I left brasil and went to London and still with the treatment and when I was 30 I got pregnant, and I thought I was cured, but not, so I went to new zealand and my sintomas started all again, from my 30 until my 40, even though I told the doctors I had endometriosis, the doctors said I did had anything, was all in my head, they send me to the pain clinic, because they think was in my head, I come back to England and nothing change when one doctor said to me the same one in new zealand, was in my head, but I fight and make him to do laparoscoscopia, snd he find out no just the endometriosis,I had the operation and now 5 years later I will probably have again, because is about 3 years I have been having the same sintomas and the doctor last week just confirmed is endometriosis again😢

Watching this again because it gives me a bit of hope that I can experience or might experience pain in early pregnancy as I never did with my first two kids but this last pregnancy might somehow be different. Thank you again for making this video!! 💐💜

Never knew I had it until TTC with baby #3 and I always had an IUD put in as soon as I could after each pregnancy. So….with the IUD I never had my Endo pain. Once the IUD came out baby 1. I had an ectopic after 12 months of trying and conceived after the treatment. I think it may have removed some of the adhesions in my tube. I think it was methotrexate I took. After IUD came out with baby 2. I got pregnant after two cycles so I didn’t really think I had a problem. I did feel pain during implantation but again, didn’t think anything of it. IUD came out Dec 2021 and it’s now Dec 2024 and still no baby, diagnosed with Endo at 44 on Jan 30 2024. At least I know I’m having fertility issues. So, Endo never goes away and even after surgery it comes back. My pain is gradually getting worse every cycle. I feel like I’m back at square one in my journey. Thank goddess for women like Em who talk about their pain and keep fighting to learn and educate others on this terrible condition. 💜💐

I had to leave a beginners yoga class after 15 minutes earlier this year, and i was so angry at myself at first, for not being able to "tough it out". But ultimately, I'm proud that I got out of the house and tried, and that I had the sense to stop when it wasn't good for me to continue, instead of force myself past my limitations.

Hi Em, thank you so much for your insight and support! I’m so happy that I found your channel. It’s been rough over here. 😅 I had a laparoscopic surgery and received my endometriosis diagnosis February of this year. I am so discouraged that I haven’t experienced any pain relief since. I am in a really dark place right now, almost a year since my surgery, with no relief from this pain, and suffering almost 6 years of secondary infertility. I’m losing hope in this battle. I’ve experienced so much medical trauma, and gaslighting through out the years that I’m so burnt out going to the doctor’s office and have major anxiety when it comes to even making a doctor appointment. I don’t even know what to do at this point or who to turn to. At this point would your recommendation be to ask for a referral to an endometriosis specialist, and continuing advocating for myself despite the medical trauma? I regret not first seeking an endometriosis specialist, it was just my regular gynecologist who performed my surgery. Anytime I’ve been to her since my surgery, she’s been zero help, so I’m really praying she’ll get me that referral. I asked my primary care doctor to give me a referral and he wouldn’t, and wants me to ask my gynecologist for one. I’m so frustrated, and just want help.

This is a great reminder. I find myself half the time getting annoyed with people because I don't want them to treat me differently because of my illness and the other half of the time I'm frustrated because I don't feel they understand that sometimes I can't manage things. I annoy myself 😂

The fatigue can be so bad. That I will wake up so EXHAUSTED and brain fogged that I CAN'T get up out of bed the day before my period. I've had to call out from work every month when this happens. Because I am not functioning and NEED to sleep. Even if I've slept for 8 hours. To me if what I would think a narcoleptic feels like during a sleep attack. It's 100% out of my control. Same with day of my ovulation. Extreme fatigue and PAIN. OMG the pain sometimes is worst than my period itself.

Yes!!! I just talked about this in my latest vid. Highly recommend this form of expression!! Love ya!! 💐💜

I think I have ureter endometriosis. I have severe endometriosis and have had a hysterectomy as they thought it was ovarian cancer. Im going in on 3rd January to have major bowel surgery as my cervix is stuck to my bowel. They couldn't remove it when I had the hysterectomy. My endo specialist said its so rare to get endo on the ureter it's definately not that but I now have ckd and a failing kidney. Your videos really do help thankyou x

The great

How is canadas healthcare?

Thanks so much Em!!!!! Just got my referral to specialist thanks to your advocacy advice, waiting to see if they’ll take me please god 🙏🏼❤❤❤

This is great advice, I didn't know for sure that I had endo until 4 years ago and I had struggled with pain and symptoms since I was 13. By the time, I was 16 i knew that my periods were not normal, I was throwing up and passing out from pain every month. I suspected endo for years, but was never sure because my mom never had issues. After getting diagnosed, I found out that my grandma on my dads side and 2 of my aunts had endo also, they just never shared. Joining endo forums and seeing videos like yours made me realise that many symptoms I had were associated with endo that I didn't even know that was a common part of it. So writing all this stuff down like you say, can help a lot to realize all the things that you might be ignoring or not know they are a part of this disease. Thanks for your videos and getting the info out there!💜

Stage 4 here and DIE bowel and pelvis and other organs that have been effected.. 😬

Endometriosis can sometimes be seen on an ultrasound, but it often depends on the location, size, and type of endometrial lesions. For example, ovarian endometriomas (also known as "chocolate cysts") are typically visible on ultrasound as fluid-filled cysts, which can suggest the presence of endometriosis. However, other forms of endometriosis, particularly those involving the pelvic lining, bowel, or bladder, may not be easily detected through ultrasound. MRI (Magnetic Resonance Imaging) is often considered more accurate for detecting deep infiltrating endometriosis, especially when the lesions are located in areas like the rectum, bladder, or pelvic walls. MRI provides a more detailed, comprehensive view of the pelvic organs and tissues, making it better at identifying both superficial and deeper lesions of endometriosis. In summary, ultrasound can help identify certain forms of endometriosis, but MRI is generally more effective, especially for deeper or more complex cases.

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?

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My daughter diagnosed with crohns,, but why is it usually only on her periods she gets blockages

I am going through bladder issues , I was diagnosed 3 or 4 years ago with endometriosis also pcos 😢 , my bladder hurts , no UTI present , culture is normal , hope to get relief soon

Mine starts at ovulation!

I completely understand and go through this too, thanks for sharing! 🤗

YES, we have to let go of that guilt, it is hard though!

Thank you for sharing, nice to know we arent alone!

I completely understand the anxiety that comes before a doctor’s appointment, I’m literally typing this while waiting for mine. I also arrived early! You’ve put those feelings into words so beautifully, and I want to thank you for sharing so vulnerably. I’m vlogging my appointment and emotions as well to help others feel less alone with these very real feelings. I often overthink how to present myself at these appointments, and I still haven’t figured out the best approach. Should I dress up, look professional, and present as educated, knowing there’s a risk that my pain might not be taken seriously because they assume I couldn’t be in that much pain if I had the energy to put into my appearance? Or should I go in looking more casual, risking judgment as someone who doesn’t take care of themselves? It’s such a tough balance. Thank you for making me feel seen with your words.

I needed to hear this, thank you lovely 🖤 You've been such a comfort to listen to over the past few years. It makes me feel less alone 🙂

Thank you so much for this. Amazing timing- I’m doing the same this week. Hate my current gynae and will not go under surgery with her in charge she’s so cold and heartless I just cried the whole way through consultation. Not giving up till I get the surgeon I want and need. So relatable and important we keep advocating ❤ thanks Em for the strength and support ❤🙏🏼

As you get choked up, I feel like I'm getting choked up! I know the anxiety and sadness you're going through ❤

I hear ya. I can walk into any board room and have the confidence of a lion. When I walk into a doctors office I normally burst into tears before I get words out. I get so scared and anxious and upset even for routine things. So much past gaslighting has done this to us. We deserve better. You're amazing.

I’d love to talk another Dr. bc my last one only performed the surgery for me. I got no answers nor did he talk to me about what he saw, what stage I am, etc. I feel like I’d have to start all over again or be in so much pain that I’d have to have another surgery which I cannot afford!! I know I have it, I know it was treated but now what?…..I don’t have anything else to go by. I guess my only next step is fertility experts but I don’t want to go that route. So, here I am. Just trying to be…but I’m so here for you and your journey and so happy you found the best for you to get you to where you need to be. 💐💜

I'm so happy everything went well! 🤍 Proper care is so important 🩷🤗

its been 2 years before i realized that its vissane that made may behavior changed. i suffer behavior and mental problem. become to sensitive and emotional

My period clots include tissue-like clots every time for more than a year...... And I thought it was normal. I've been experiencing chest pain, coughing simultaneously, and a difficult inhale and exhale since 2019 December. And lung collapse for about 0.5 sec sometimes, allergic to some scent, inner ear pain, gum bleeding sometimes, leg pain, back pain, shoulder pain, neck pain for about 8 months. Is this related to thoracic endo? I'm nearly giving up to Doctors😢 please help