Welcome to my channel! This is a safe space for those who are looking for support or education around endometriosis, or just a friendly face to share life chapters with! My channel is a mix of my chronic illness journey and everything in between!
Whether you’ve been formally diagnosed with a chronic illness or are on your way towards finding answers, know that you are not alone in what you’re going through!
*not providing medical advice - just a channel created by a patient who shares her personal endo journey and the research she’s found🤍
Hi. This is such an important topic. We need to raise the awareness on womens health and womens issues. Struggling with pmdd myself, but I am gradually managing my symptoms as I gain knowledge and experience on intentionally changing my diet, healing trauma, managing stress regulation, emotional regulation, praticing self compassion, etc. In my perspective the solution doesnt depend singularily on the womens hormones itself, but rather also on changing society`s attitudes and view on women, productivity and worth in general. Love from Norway <3
Your RU-vid video content is so good. However the video does not get many views. Because your RU-vid channel has some problems. Do you want to know about the problems?
Hey, I’m really grateful to hear your honesty in your journey and appreciate hearing your experiences - My partner has Adenomyosis and we have been going through getting them diagnosed recently and successfully - having the normal years of fighting for it etc. but having had a self-funded operation to remove endo we found out that it was adenomyosis and are now feeling like we learning from scratch again but also with the new perspective of this being my partner’s new normal. I was wondering if you have any recommendations to help us learn more about pain management, how to find support in this isolating situation, what jobs are good for people with these conditions and how to ask for support/accommodations in jobs and for me how to best support my partner if you have any advice if you have anything in place for support with mental & emotional wellbeing and pain reduction, etc. Feels like a big ask sorry, but if you can recommend even just channels or accounts that help you or anything that could help point me to something then that’d be plenty helpful Thanks for taking the time to make this content and reading my comment x
My OB said it was pretty much PMS.. although I kept desperately emphasizing how debilitating and intense these symptoms have been. They are often up to 2 weeks before my period even starts! 😔 I don’t feel like myself for half of the month.. it makes you want to completely isolate during that time. She prescribed me a low dose birth control this week. I sure hope it helps balance me out.. although some people say it comes back with a vengeance whenever they get off of the birth control. I’ve been trying every natural supplement I could find all year 🙏🏼
I took the zafrilla (visanne generic) for 4 years. I initially had an easy transition, my insane pain and all my other symptoms of Endo and adenomyosis stopped almost suddenly nearly completely. In the first one or two years it really gave me my quality of life back, I got to study, do sports, my relationship was no longer affected by endo etc. But I did notice from the beginning of taking it, that it reduced my „highs“, mood wise. It felt like there was now a limit as to how happy I could feel, whilest moments of feeling down, stressed, anxious, sad all got kind of worse, more intense, but by then this still outweighed my endo symptoms. After 2 years though I really noticed it affecting my mental health, making me feel depressed, not like myself, nearly always in a bad mood with no actual reason for it. The menopausal symptoms began, too, with hot flushes etc. My sleep quality steadily declined in the last 6 months, sometimes I could only sleep 3 hours at night, laying awake for ages and being insanely tired and exhausted. But because it relieved me from so much pain, it took me nearly two years to take up the courage to change medication. I’m now trying to switch to another pill, a combined one with low estrogen, hoping it will still help with the endo symptoms but without the extreme sleep problems, depressed mood and so on. Thank you for talking about it, sometimes it feels very lonely struggling with all this, and reading the comments is helping a lot. ❤
Oh my gosh I thought it was just me! I turned 28 and suddenly started having leg pain and everyone says its muscle cramps. But literally runs down to my toes from my pelvic area! Keeps me kneeling for half an hour at a time cause sitting down just exercebates the pain. Sometimes feels like my own body is punishing me 😢
I have taken dinogest, for 3months now, previously i had multiple endometroid cysts on both the ovaries in sizes of 2to 5cm, but after dino they have disappeared completely, along with the medications i took care of my diet did exercise. I feel like we cant just be dependent on the drug alone for the endo to decrease, its actually a multip disciplinary thing where u control what u eat, how much u exercise and how u control your stress levels. I had a lot of side effects in my first month, like hairloss, acne, mood dysregulation, constant feeling of bloating etc, but was able to manage everything until i reached the last month, ofcourse but the spotting is trouble some. So ladies please dont lose hope after looking through the side effects, personally i felt that dinogest is a good drug for endo.
Such a useful site thank you. I was symptom free until 51 and went into hrt for brain fog and low moods whilst going through perimenopause. My health has taken suxmch a hit. Off HRT but now diagnosed with endo and adeymiosis and the left upper heart area and top of lung hirts 24 / 7 often waking me each and every night. So now under gyne and cardio and trying to work it all out. Will discuss this info with them as making my life a misery with pain, high blood loss and fatique. Thanks for sharing x
You're amazing for sharing this and sooo helpful probably more than you realize and will definitely keep this in mind if I have something similar in the future...endo can be sooo horrible and you're not alone either ❤😢
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.
Thank you for sharing 💖 I get flare ups with workouts also it used to only be with intense workouts but now even with low intensity workouts. Also a week before my period I start getting flare ups so I know it’s coming then during the week of my period I can’t even get out of bed and then a week after my period I’m still hurting so yeah 3 weeks out of the month I’m pretty much out of commission. Diet has a huge impact on me I cannot eat gluten at all or else I will be in bed in tears and level 10 pain for 4-5 days. I eat a pretty clean diet otherwise and gluten is a big no no. I have also carried what I call my period bag and everyone closest to me knows where to get it if I ask for it. In it I have an extra change of clothes because when my period comes I can fill a cup and a pad in 15 minutes so sometimes if I’m driving for 20-30 minutes, I cannot make it to my next destination before I can change so I must carry extra clothes with me and wipes a heating pad, tea and a blanket, pamprin and just extra things that I know help me deal with my endo period. When I was in high school decades ago it was humiliating staining my clothes and having to be sent home to change… why didn’t my doctor then tell me that what I was going through wasn’t normal? Why didn’t my teachers and school personnel know how to support me? We need more awareness about endometriosis. I was diagnosed in 2011, 20 years after I had started my first period. Before that I didn’t know why I was the only one suffering with such heavy bleeding and excruciating pain in my family, my friend group, and at work. Still now they don’t understand… only my husband and my two children understand. Yes I’m a mom! I have two miracle kiddos. They are truly a treasure and a miracle. I’m so blessed to have had my children even though I have endometriosis. 🙏🥰💞
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. 😊
I wish I had had the ability to explain how severe my pain was. But I didn’t know any difference, as I experienced severe pain from age 13 on. Young girls need to know that such severe pain you can barely move isn't normal. And it sucks that girls don't know the difference.
Have you been operated before for endometriosis? I had a consultation with possover/neuropelvioloog last year and he said sciatic nerve is progressive and has to get operated on. I have neuropathy literally every second of the day, in left leg (horrible sharp pain left foot, burning feeling in calf, rightness, pain backside leg, sometimes numbness) do you have also these complications?
I "spot" for 1-2 weeks before I start my menstruation. I also started cramping everyday of the month starting since June. Currently trying to find affordable access to an obgyn with experience with endometriosis 🙏
Thank you so much for this video. As now I know I am not alone. Excruciating pain, heavy bleeding feels like I am in a blood pool. And there it was the doctor telling me not to over exaggerate... Got diagnosed last month. I know how it feels..
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!!
I was diagnosed in 2018 after having a myomectomy. My periods were OK for maybe 2 years after that, but now are horrible. Ive decided i cant take it anymore im just going to have a partial hystorectomy
It's sad that I've gone most of my life just accepting the pain and trying to get through it. I don't really remember the first time I got cramps, it feels like it's been since the beginning but as I've gotten older it has gotten worse. 😢 your determination in getting answers is admirable.
Partial Hysterectomy with bikini abdominal incision at 28 yo showed endo; ovaries with cysts and endo removed via laparoscopic surgery 5 years later. 9 years later left sided endo pain felt like a pulling sensation. Surgeon did lap for diagnostic purposes and found endo attached to sigmoid colon but was able to easily separate; added Intergel for adhesion prevention. Now 22 years later same pain in left lower quadrant and left hip. Trying to get doctors to not think I’m crazy and do an MRI. CT w/contrast was normal.
I was diagnosed with adenomyosis, fibroids, and hernias at the beginning of this month. I’ve had all of these symptoms except the heavy bleeding. Is that something someone else has experienced? I also have had a loss of appetite. I’m waiting yet another ultrasound for whatever reason, I’ve been to so many ER visits, and I’m on strong pain medications until I’m scheduled for surgery.
I also have adenomyosis and most periods are not so heavy. I did have a strong loss of appetite, but now its less since I use the Pill for a bit of regulation of the illness.
Thank you for these videos! I have my surgery in September. How does your work handle your really bad flare ups when you are having to work in office? Do you call in sick? I'm in the military, going to be medboarded after my surgery. I am just wondering what I should look for in an employer (on the civilian side) when I have this condition. Hoping that surgery helps alleviate a lot of my symptoms. Right now I usually have a bad flare up once or twice a month that lasts for about 2 days where I literally cannot do anything.
Thank you for the video. I related to the feelings about social gatherings, and the cramping caused by eating different things than usual. I've recently discovered that for me the worse are sweet foods, sometimes even fruit (especially on the second half of the day, which is when I have more pain anyways).
Thank you for sharing your knowledge. I am an RN and I have worked all my life. I’ve have one Endo Excision surgery in October of 2020 and was on short term disability for two and a half months. I ve worked in the operating room since and I a continuously monitoring my symptoms and reading new peer review journals to better understand my ailments. I have just started experiencing dull low back pain and have reached out to my PCP and requested an MRI. I was able to get a pelvic and abdominal MRI last week. I have contacted a specialist and will hopefully meet with her next week for surgery #2. This time a hysterectomy with endo excision and exploration of the ureters and kidneys. My husband asked me to quit my job so that I can prioritize my health and we with hopes that I have sought care in time to save my kidneys. Thank you so much for sharing your knowledge so that we can better advocate for our health. Best, Brandi Bettle
I am 4 weeks pregnant. After trying for a year and one early mc. I have diffuse adeno and suspected endo. I am in pain right now particularly on my right side and I am so scared. I’ve called twice to the pregnancy unit who said they cannot determine whether ectopic till later on. So I am holding on by my finger nails. I suspect so strongly it ectopic and it will be another loss and my journey with the fertility clinic will begin. I am so grateful to be pregnant right now and I just want it to be our time. Thank you for your video, it has given me a small ray of hope especially knowing you made it to delivery.
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.
My pain was quite mild in comparison. The problem with that is it went wild in my body for 30 years until now my organs are all stuck together in my pelvis.
I 28yrs old just found out after having a miscarriage last year and right after having the miscarriage got on the depo shot have not had a period for almost 1year and 4 months in July my OBGYN diagnosed me with pcos and endometriosis. I’ve watched your video previously to watching this one about you finding out you were pregnant 2 years ago congratulations on your beautiful baby what a true blessing. To your family I recently was transported to the E.R due to excruciating pains in my pelvis and right side another ultrasound confirmed my endometriosis I have come across this specific video about different surgery’s and I had to pause the video to cry my eyes out ( Reality kinda set in for me) I have two children a girl 11 and a boy 3 I never would have thought that it would be so difficult to have more children. I just want to say thank you so much for giving this information to the world of woman who goes through this on a daily my OBGYN really didn’t explain more to me what I could do to help subside with my diagnosis but you have done a lot more explaining then he has. So I’m writing this to let you know I will be changing my OBGYN to a woman and seeing if a specialist in that field can help me feel normal again. Again thank you for the important information
This is helpful to hear. Often time when I would be in a flare before I actually knew it was endo, in desperation to understand what was happening to me I’d seek out videos like this to validate myself that I wasn’t crazy- and I was curled up in the fetal position laying naked next to the toilet b/c I was getting sick and was sweating head to toe from the pain. It was comforting to hear other women validate my pain. For years I felt like I was weak and/or crazy, that maybe I just had something wrong with my pain tolerance. Turns out that endo warriors are the STRONGEST women and basically feel like you’re going into full blown labor once a month for years of your life. Thank you for sharing❤
I am 35 weeks and omg the itchiness is so bad all over the body! I don’t have my gallbladder and I was tested last week and blood work was negative. My OB prescribed me a medication urdosol something like that. She said that should help with the itchiness and I am scared because of the stillbirth. I got tested again yesterday and waiting on results. I can’t with this itchiness! It so bad especially during the night and now the day. I had to get me a 🪮 to scratched myself because it’s so bad 😭 might get induced on 2 weeks
Currently having a flare up it’s been 2 days and counting I like to come here and hear other’s stories during my flare ups as my family does not understand.. along with Endo I have IC (painful bladder syndrome) the upper thigh pain was so bad for me that is caused my thigh muscle to get stuck in a hard spasm so my thigh looked like I had a speed bump in my leg 🤦🏾♀️
I really needed too see this video there’s not enough research on adenomyosis I kept seeing that hysterectomy is the only treatment I refused to believe that.
