Living with Endometriosis - Diagnosis, Treatment, Surgery | My Endometriosis Story

My old doctor TRIED to deny me a referral for an ultrasound and I went off on her and got the referral and I was right, the ultrasound showed several fibroids. These doctors' egos and medical gaslighting have to STOP!!!

Thanks for being so brave and telling your story Letitia. I'm 76 in March but when I was 39, after over 25 years of symptoms like yours, I had surgery. When I woke up I had no uterus, nor ovaries, because I had such bad endometriosis that my insides were a mess and I had fibroids and cysts and the only recourse was to remove it all. So, I went through surgical menopause. My doctor said they didn't think my ovaries were producing much hormone anyway, which was not true, because I had severe menopausal symptoms, despite being given estrogen pills, and I still had some other symptoms which were from endometrial tissue that wasn't removed, but after years and years of pain and heavy periods lasting a week, every 21 days, I was better off. Painful poops, oh yes. I was lucky, I had three healthy babies, and now I'm a great grandma, but endometriosis can affect fertility, so if you think you might have the condition, go check it out. Bless you all out there who have suffered with it and I hope you get help and get well. Too often we just grit our teeth and carry on, when we need to fight for our health. Five years ago I survived lymphoma and open heart surgery plus emergency surgery for a perforated ulcer, all within one year and while I was being treated for the cancer, and you know what? It was nothing when you've lived with chronic pain for years. Look after yourselves. Thanks again Letitia, we need to speak out for each other. 💖

Thank you for sharing your story! I'm writing my masters thesis on endometriosis. It's so helpful to hear people's real life experiences rather than just reading research articles, and so encouraging you found a provider that you felt has adequately addressed your condition. Best of luck moving forward!

This couldn’t have come at a better time, I’m going through the worst period ever with endometriosis & have no one to talk to so thank you

Thank you for sharing your story. I’m 27 and have been struggling with endo related infertility for over two years now. Not to mention the horrific pain, surgeries and uncertainty caused by this disease. The more we talk about it, the more research will be done. Technology for locating endo has already come far since I had my first laparoscopy three and a half years ago! Bless you for using your platform to spread awareness 💕

At this point I want my whole uterus taken out. I'd muchrather go through menopause than live with these pains,and no one believing me :(

Although I am so lucky to not have endo, I have so many friends/family member who have these issues. This video was a great way for me to better understand what they are going through. Thanks for always being so open and honest 🖤

Thank you for making this video. I recently was diagnosed with very severe endo and got my first excision surgery. There’s a lottt more to do, and symptoms are still here, but hearing you talk about it, helps 💕

This gave me so much insight. I get horrible periods exactly like you described but my cramps always have me throwing up or close to passing out. I don’t bleed as much as you said you do. I always tell my parents how bad it is but they neglect to do anything about it. Luckily I turned 18 October 3rd so I can schedule my own appointments.

I was just diagnosed and got surgery yesterday. Hearing that you are now pretty much pain free and how amazing you feel gets me so excited for what’s to come for me! Thank you so much for the video❤️

Thank you for sharing! I also have a similar story - I’ve been having severe pain and bleeding since my first period at 12. I was never able to use a tampon without a lot of pain, and would immediately bleed through it. I resorted to constantly using max night pads (super long and super thick - it was like wearing a diaper 🥴) and would bleed through about 3 of them in an hour. I even had a whole year of nonstop bleeding and pain to the point of passing out. I’d had cysts that ruptured and missed a week of work for that - they put me in a wheel chair if I ever had to walk anywhere for that time too. Twelve years later, 8 different types of birth control with no success, and now I can’t take any pain meds as they have little to no effect - I finally booked an appt with a specialist in endometriosis and PCOS. All my life I’d been told it was normal, and I just had heavy periods. This specialist found the abnormalities right away and booked me for surgery (which is in a week). Not only that, I have a consistent perscription that, coupled with the surgery (for removal of endo and pain management) I’ll be period-free and therefore stop the growth of any more endo until I’m ready to have kids (and can get off it for that period of time). Highly recommend for anyone experiencing period pain to see a specialist - period pain is not normal!

Thank you for making this video! I got the diagnosis via a laparoscopy..it felt bittersweet to finally hear what is causing my pain: it was a 'i told you something was wrong'-thing but it's a heavy diagnosis. I've read so many heartbreaking stories of women with endometriosis.. Currently I'm searching for a excision surgeon who doesn't require me to travel across to many countries ( i can't get a referral bc some doctors in my country claim to be experts while the reoccurence rate in their care is way too high).

Our stories are so similar. My story is a bit of a horror story. I went years treating the anemia caused by my bleeding but not the endo that was the root cause, I had my first IUD put in by a gp who was recommended by my GP and she did a horrible job. I was in blackout pain for 3 days after the insertion which a year later turned out to have been a botch job because the device wasn't even anywhere near my uterus. When I finally went to a gynae and she tried to take it out it was stuck in my uterine wall, during the exam the gynae did an ultra sound and found fibroids in my uterus and a big cyst on one ovaries so i went in for lap surgery to remove the fibroids, the cyst and the botched mirena and then they found the endo. In the same surgery the gynae inserted a new iud. The surgery and especially the properly inserted IUD has made such a huge difference to my quality of life i can't tell you. Finding the right doctor really makes all the difference and not giving up, it me a good 20+ years of struggle to find a good doctor and actually get help.

After finding endometriosis during surgery in 2018 I was in severe pain went into gynecologist office in 2022 and he said I needed to stop looking for a problem. For the next year I kept thinking of harming that Dr. When I was in pain. He didn’t even check for a UTI or anemia A year later I’m passing out having abnormal periods bleeding three times a month and am wanting a general surgeon to just cut me open to see what’s causing so much pain and now they r concerned I have endometrial cancer. I am so beyond frustrated and feel like I have been unheard and looked over. Medical gas lighting is a very real thing! Finding a Doctor that cares is very rare!

Thank you for sharing your story love! It might not seem much but it can help others seek out help.

Thank you so so much for making this video. I've been suffering with a lot of back pains for years and no one knew what it was. This month I'm finally getting tested for endometriosis (I've been waiting for 3 months already). I'm so happy more and more YouTubers are talking about endometriosis because it's so unknown.

Thank you for taking the time to share this with us. It’s comforting to know we’re not alone! Hope you feel great.

Perfect timing, I’m stuck in bed with horrible cramps right now! This is the first time I’ll actually have medication for it though, because I’m finally at college where I don’t need my parents permission to see a doctor that will take me seriously!

Yes! The period poop. I have not been officially diagnosed with endo (haven’t gotten a scope done), but my gyno believes i do have it based on my extremely painful period poops and cramps. I have never given birth but that is also the only way i can describe the pain.

Thank you for sharing your story! As a fellow Canadian, you're the first one I have heard not having an extremely long, drawn out process getting the surgery/diagnosis here! Glad you were able to get some relief! The people who end up staying in the hospital are usually more advanced/complicated cases. Basically stage 4 endo aka deeply infiltrative endo where it grows more widespread and deep inside other organs like the bowels, bladder etc. Have been suffering with extremely painful periods that didn't respond to prescription pain meds and often included vomiting for 15 years now. It wasn't until new symptoms (passing mucus & painful bowel movements) and the 8th GP that I was taken seriously after being referred to a GI specialist and having a colonoscopy before being referred to an OB/GYN. My first appt with her was in June where she said it was very likely I had endometriosis and recommended surgery and/or orilissa. The side effects ain't it though 😩 and pretty hesitant about surgery. Especially since I would like to have kids one day. Very conflicted RN. You are absolutely right about having to advocate for yourself cause the medical gaslighting and dismissiveness is rampant unfortunately.