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. 💖

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

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

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 💕

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

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!

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).

Thank you so much for making this video. Honestly, so helpful and informative.

Thanks for being open and candid, as usual 💗

This was soo helpful! I go for my pre-op appt today and looking up videos to makes sure I’m asking the right questions. 🙏🏽💕Thank you soo soo much for sharing and passing on your experience. Wishing you the best!!!! And hopefully you’re getting better and better!

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 :(

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 💕

Thank you for sharing! I’m having endometriosis and fibroids removed in a few weeks. This gives me hope that my pain finally has an end date.

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 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.

Your video is one of the most real vids I have seen, thank you for sharing. I am yet to have my consultant believe what I am saying but this gives me hope 👌🏼

Thank you for sharing your story letitia!!!

This gave me some hope! Thanks for sharing your story

Thank you for sharing your story! I am 17 and I am having a hard time finding a doctor willing to see if I have endometriosis.Share more please!!

Thank you for sharing your story, I don't have endometriosis but I like knowing more about it so I can better understand the woman who do have it. And yes the American health system really sucks, seeing a professional at a hospital is deff not an option. But thank goodness for Planned Parenthood, they provide professional services and consultation for so many sexual health concerns without having to go through a primary care doc.

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.

best video on this topic! Thank you so much

Thanks for your story. It's important to be forward in taking care of your body. I like the way you spoke.

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.

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❤️

I am so glad you were able to get a treatment that works for you! ❤️ It’s a lot! Take a more natural eating approach! Avoid eating processed foods; alcohol, sugars. Etc.

So appreciate you sharing your story - so insightful and helpful to so many people watching!!

This video is very informable about living with endometriosis. Women should go talk to the OB/GYN about concerns they might be having with their body. Thank you for sharing your very personal story about the matter❤️. Hope this video helps a lot of women who are looking for answers. ☮️

Thank you for sharing your story and bringing awareness! Really helpful video.

Thank you for sharing your story ❤🙏

Thank you for this! My first lap is on the 22nd!

Thank you for sharing your story 💜💜💜

Wow very informative. Thank you Letitia👌🙏

So informative! And your gyno is a real one.

Your incisions look remarkable. I have had a lap tubal, a lap Appy for ruptured appendix, a lap gallbladder surgery with post operative hemorrhage so back in with another lap surgery to find the site of bleeding and to put in a drainage tube. My scars are so ugly and the one is in a very weird location from where they drained the blood. I have 3 adult kids so my stomach was already full of stretch marks so this added to the scars. Now I’m worried that I have Endometriosis or something else going on. I’m glad that you’re doing well.

Oh wow I'm surprised your GP said an IUD is for older women. I'd never heard of that. I've had an IUD for a few years now because I can't take estrogen. i had tried depo-provera injections for a year and I spotted nearly everyday for that year. Having an IUD has been amazing for me!

Thank you for this video and your positive outlook 🌸♥️. It's relieving to not only hear horror stories about endometriosis 🙈

Hi thank you for sharing your story. I just removed my ovarian cyst last month.

Thank you for sharing. I was recently diagnosed with Stage 4 a couple of months ago.

I've just went to see a gynea 2 years back, then only the doctor said that I might have endo. I did annual checkup, where they found cyst and fibroid alternate year,each year a side, and both at both sides. They said it's normal, the sizes are too small to worry about eventhough I did tell them about the pain every time. So, going to the hospital is a good thing for us, still a devastating news for me, honestly. I will undergo the surgical end of this month, so, thanks for this video. Hopefully, everything will be clear. That's what important, really.

Thanks so much for posting this, girl! Very informative. I'm actually getting surgery soon, too. I am wondering if you could explain more about what it was like to get put to sleep? This is the part that freaks me out!! Like, what does it feel like? How do they do it? What does it feel like when they put the stuff in, like do you get sleepy or is more like wide awake to instantly out? Could you have stayed awake if you would have tried or is it impossible? Haha. Basically whatever you remember about that part would be helpful. Thanks so much!

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!

Thank you for your transparency and sharing your story. I’ve been having lower abdominal pain post period for almost a year now and my doctor wasn’t able to diagnose my problem. A friend mentioned endometriosis to me and I’m looking to learn more about it. Hopefully that’s not what I have.

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 so much for sharing your story❤

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 RU-vidrs are talking about endometriosis because it's so unknown.

Thank you so much for sharing. My first gynaecologist was useless and extremely condescending and I had to make a complaint to the hospital in order to be referred to another gynecologist outside of my hospital catchment area (I'm in Wales, UK) I was supposedly on the "urgent" list for a laparoscopy with him, but that was a year's wait BEFORE Covid-19 hit, now I have no idea how long I have to live with this constant pain 😭 xx

fellow endo sufferer! you are so beautiful, thanks for sharing your story :)

It's interesting woman have said to me multiple times it's important to ask for female doctor, it's better. But the time I had a male gynecologist was the time i felt most respected and taken most seriously about my pain. Like maybe he needed to know theory more and couldn't compare with his experience as he isn't a woman. It was powerful, I couldn't believe how believed I was by the doctor. Such a nice difference.

Hey thanks for sharing your story. I am 56 I ended up having a hysterectomy at 45. My pain started with my first period at 13 was on the pill at 16 to help with pain and scheduling because I never knew when I was going to get it. Heating pads were my best friend I also filled the bath tub with all hot water. I have been to so many doctors nobody new what to do. From 29 till 45 was hell the shit I did or was told to do ,really screwed me up. My pain (besides period pain) pain when I had orgasm, when I pooped the pain went down the front of my legs and across my stomach I couldn’t walk. Plus when I went up the stairs I got the same pain always had to lay down. Towards the end I was in non stop pain. I got the hysterectomy and it all went away and they can’t tell me why and that hurts I needed a answer because some people thought I was crazy.

I just got diagnosed today and your video was comforting to watch, thank you ❤

I was scared to watch this video because I didn't want to confirm what I was afraid of ): But my periods are very abnormal for sure. I'll have to go talk to my doctor. Thank you for this video.

My daughter got a "teenage" IUD at 16 and it was terrible, when it was removed, she was scarred and that's how she got endometriosis. On the other hand, I've been wearing IUDs for 16 years, but then agian, I've had a child and I'm much older than a teenager

My PCP was super caring and acted quickly when I told her a while ago I’ve been dealing with heavy periods and spotting in between periods since I was 12 (I’m 32 now). She got me in for an ultrasound and they determined I have a thick endometrium. Fast forward a couple months later, I go to a GYN at Mass General Hospital in Boston, she was so condescending and dismissive and literally said, “Only 5% of women have endometriosis, just because your mother did doesn’t mean you do.” Then she performs the pelvic exam and says she can literally feel the tissue, and appeared surprised, almost like she should’ve eaten the words she scoffed at me before the pelvic exam, so she was wrong to begin with. I feel like I can’t trust any doctor except my PCP because I’ve been complaining about this for years and no one seems to take me seriously. I am in extreme pain for the first 3-4 days of my period then it starts to settle and I continue to bleed for another 3-4 days. Sorry for the novel and the graphic details but this is the type of thing that pisses me off.

This video is so powerful. I am going through a very similar situation. Have been trying to get help for over 8 years. Found a doctor who is now sending me to two specialist who are very promising. I hope to meet with them soon so I can finally get some pain relief and hormone help

I’m watching this video while re covering from my surgery (I had a 5cm cyst removed from my left ovary). I woke up from my surgery still drowsy while the doctors and nurse were talking about Endometriosis. I had no idea what that word meant until I got home. I don’t have an appointment until January 2022 at the hospital for me to know if I have the condition or not but thank you for sharing your journey.

This story sounds like mine. Heavy bleeding and severe pain for years and I have to threaten and come in and bleed for my dr before she agreed to do a laparoscopy to check for endo. After surgery when the dr told me I had endo, I said ‘I told you so’, and found a new dr

I have been living with a lot of pain surrounding my period since I've been 11 years old. My family wasn't the best so I never really got to a doctor but to get a pill so I shut up about my pain. Now after moving out I started seeing doctors and just from the anamese they said that I have very likely endometriosis. I'm super afraid about that because I really wish to have children of my own at some point. It also runs in the family. At least my mom told me that a lot of my aunts experience heavy pain during period, but none of them ever got diagnosed. There is some parts in your video that I did not even were related to endometriosis. I'm glad that I live in Germany and there is some institutions especially about endometrioses now. I really want to get sugery but now knowing that it might even lessen my chances of fertility (I did not try yet to have a baby. I'm only 20 lol. Somewhen around 25. So I don't know if I am fertile at all) I am even more afraid of it. I do not want to live this way anymore. I can unfortunatly also not get any hormonal treatments. I had tried 3 different ones and all of them made me suicidal and act out against the ones I love which pains me more than my period ever could. I do refuse to ever try some hormonal treatments again. I am kind of in a loss of what to do. So I wanted to figure out how other people live with this. Thank you so much for your video and honesty.

I got an mirenna iud then they found I had PCOS, it hurt from the moment they put it in till they took it out few months later.. and now almost a decade later I have signs of endometriosis and vulvodynia 😅 thanks for sharing your story ❤

Absolutely great content for many women suffering from painful periods and may possibly have underlying health issues. I’m from Canada and was wondering if you could share your wonderful doc’s info?

I went to see the doctor today and I found out that I have endometriosis too... They gave me pills ang some pain reliever I hope it works for me.. Thank you for sharing your story

I just did MRI two days ago and I’m having this! Going for surgery really

I'm getting tested for endo soon. I'm absolutely terrified to go under anesthesia.

Omg. My gynaecologist just operated on me for cysts and found out I have endometriosis. Thanks for sharing.

Endometriosis spoiled my life,diagnosed in 2019 and since then I have lost relationship my career due to this horrible desease .Had surgery it came back in 6 months.had lupron but still pain is there

I’ve always wondered if I have endometriosis because I sometimes have to wear overnights and change those every 4 hours. I also get really bad achy legs. I’ll be getting this surgery done soon and find out!

I was diagnosed with stage 3 endometriosis . Weird because I never had heavy periods or “super painful “ periods that Tylenol couldn’t fix. 😞 I’m 35, only 2 kids never on birth control until now to “help” slow down the endometriosis.

just went to Obgyne last Saturday find out I have this case.thank you for sharing your story.😊♥️

Would you be able to share the specialist info? It's so hard to find a good health professional that really cares and I'd like to consider seeing him

My cycle is just like yours. Pretty much every other month I have two periods a month and they last around 8 days

I have endometriosis and had to have polyps removed in September and an IUD placed in I have the Miranda. But I have cramps all the time and my boobs hurt all the time. I feel bloated all the time I always feel like I have my period and I'm always tired. I've become anemic and had to have iron infusions done. I do bleed light for sometimes 2 weeks at a time. I am very blessed that I don't have the heavy bleeding like I used to I literally had to wear adult pull-ups or adult diapers because I would bleed so heavy. It's very hard still with feeling like I'm cramping all the time.

Thank you your great

my past gynea made me feel so humiliated and made me cry. i never felt heard as i am still in so much pain and my periods are so heavy

I got diagnosed in February. I have short light periods. No cramps. Weird random pain and poop pain all the time. Multiple large endometriomas. Trying to get to surgery and I'm high risk for everything returning.

After over ten years of excruciating pain, I FINALLY found a doctor that listened to me and I’m set to see a new obgyn next month to see if they want to open me up to see if I have endo. This video made me feel more understood and knowing I’m not alone with what I’ve been going through

Interesting about tampons vs pads with endo. My endo makes my entire pelvic area (including vag/cervix) so irritated and inflamed. Tampons HURT. The thought of inserting a tampon when I'm having endo cramps and muscle spasms makes me shudder! Weird how different our bodies can be

Thank you for posting this. I have had really really bad periods for the last 5-6 months. Like I mean passing out multiple times, vomiting and back pain. My family doctor here in Canada refused to refer me to a gynaecologist and said to just “wait it out”....... I didn’t realize this was illegal at first until a friend told me. So I went back and explained how bad my period is and I need to see a gyno and he’s like “I can’t send you to a gyno for cramps”’ lol ...... so I got a transvaginal ultrasound a couple of days ago. All signs are pointing to endo. Hopefully I get my referral soon so I can finally know why:(

You are lucky your mom work on health care in Canada. When I was in Canada I have to wait 6 months to see Gynaecologist after trying so hard to convince my GP who has big ego.

In the UK an IUD is what makes your periods even heavier. I’ve been suffering for 10 years + and now the Drs are suspecting endo, which makes perfect sense to me. However it’s only been since I’ve come off the pill and only an IUD where the pain is unbearable and I’m now getting join pain, fatigue etc... It also didn’t help that the IUD perforated my uterus (which I was hoping was the cause of me being so unwell), however 2 months on I’m still really suffering. Hoping to get answers soon, but these sorts of videos are gold, so thank you very much 💕

thanks for sharing..

Question for those with endometriosis… I am wondering if I’m developing endometriosis in my early 40s… my periods have been slightly heavier, and cycle sometimes shorter, this could just be perimenopause …but … in the weeks before my period I get what feels like burning tissue around my uterus and ovaries. Does anyone with endometriosis experience this symptoms? Everything I’ve come across seems to be mostly focused on actual period issues than sensations experienced in between periods.

I live in America. My aunt has had 12 laps and has SEVERE endo. It's pretty much all over every organ. She was told she would never have children. She has 5 now! She had it this bad by the time she was 11 years old. Anyways, she said she was discharged and went home the same day everytime she had a lap. Here in the US, it's considered a minor surgery. So whoever had to stay longer, they either had some sort of complications or something that the Dr might have been concerned about or they had a crap doctor. I personally love our Healthcare system. A few of my friends used to live in Europe where they have universal Healthcare and they hated it. They said that they had trouble getting into a doctor quickly. I can call my doctor and get in the same day. Also, I've given birth twice and never received a bill. My insurance covered everything 100%. 🙌

Your dr needs to teach other drs to be like that.

Yes...pooping hurts so bad. Like needles. Can you describe the pain when you poop pls?

I’m in the journey of knowing if I have endometriosis or scar tissue or both because I had c section surgery. It’s complicated when you jump from one doctor to another for years without getting any answers that make some sense, thank you for sharing your story.

Hi Letitia, do you still have painful Bowel Movement after the Lap surgery ?

I had an 8cm blood filled cyst that wasn't properly diagnosed in Canada. I was in hospital for 5 days ....

Hi gorgeous!! I’ve actually been going through something similar and am currently looking for a doctor that specializes in endometriosis. I’m also in Ontario. And was wondering if you wouldn’t mind sharing the name of the doctor you saw? ❤

Thanks so much for sharing your journey! i was diagnosed last year at 24 when a huge cyst I didn't know I had ruptured and I got sepsis. Because a general obgyn did the emergency surgery they only drained the cyst while taking out my right ovary and tubes, so I'm getting another surgery this October with a specialist to excise it along with other cysts I have on my left ovary and endo. Can I ask if you're taking birth control to prevent the cysts from coming back and if it's worked? Also do you remember how big your cysts were and if they had to remove your ovary?

I was actually diagnosed with severe endometriosis through an MRI. I didn't have to go under the knife. I've had a polyp removal and I'm having a mirena coil in a few days. I have flare ups with a lot of pain which is getting worse over time, and I'm bleeding brown blood literally ALL the time which is really getting me down. My GP is putting my coil in and now I'm really worried after seeing this video that she won't do it properly 😥

Hello, I just had my lap surgery 2 weeks ago and just got my period which was super painful. Was your first period dreadful after surgery or instantly much better? Is this a red flag? I am really hoping to have a less painful period even if it's just by a little bit...

I love to see people speaking up about endometriosis cos i thought i was alone. I have my story up on my channel.

I was told that I have endo too based on my symptoms. Honestly, I'm still trying to wrap my head around it....I want kids but I want to be married first. I'm scared of doing the laparoscopy...the idea of surgery scares me...I hate needles. This is so stressful and emotionally draining.

Hey Letitia, i like that you talk so highly of your gynecology doctor? Can you share his name and where he works?

Is pain a main factor? because I don’t get much pain, or cramps like 90% of the time I don’t feel anything just a dull ache consistently. Bleeding everyday consistently.

Thank you for sharing your experience! This video has been posted quite a while ago but Chinese herbs/ acupuncture can help with short cycles...you don't have to live your life bleeding every 3 weeks- that's too often and very tiring/and taxing for the body

My Dr., told me that surgically removing the endo that has adhered elsewhere has a low long term success rate. What helped me is taking birth control pills continuously to avoid getting my period. By not getting a period. My symptoms went away.