I totally understand the serrated knife feeling. I get it in my lower tummy all the way through to my lower back... lower back pain is 24/7 365 days a year. "Use to it"... what gets me down is the accompanied migraines every few weeks. No-one understands it. 2 laparoscopies in 2 years and on Visanne. But the visanne made me super moody although it took my migraine and some of the flare ups away. Now on a mini pill and cant wait to get back on Visanne because suddenly (since i started with the mini pil) all the worst symptoms came back immediately. And now the pressure of my comfy tracksuite touching my tummy can hurt.. had 2 c-sections and 2 healthy boys (12 and 7) only diagnosed end of 2020 with stage 4. Good luck to all you endo ladies.

Sis I'm the same, I will go to the ER. I would scream uncomfortable with episodes of psychosis. There is no position to soothe me, it's horrible. At times I'm screaming "please can you just kill me please... I can't take it anymore please". I would cry and cry with no tears . the last time was November 2022, I was medicated 3 × before the pain stopped. Morphine ×2 and Fentanyl ×1. I don't wish this one my worst enemy ladies, it's too horrible. Also that was day 3 of my cycle.

I've always had painful periods, but even the pain only lasts one day, it's very intense. I've always described it as a rat scratching from inside (a bit creepier than the knife, sorry). I thought it was normal until on April 2021 I started having stomach cramps (upper abdomen) after drinking coffee or certain foods (spicy, fried). I quit all of them but it kept going on, I even had to quit tomatos and told myself maybe my stomach was irritated and I noticed only heat eased the pain. The flare ups sometimes come in waves between upper and lower abdomen and can last many hours, feeling discomfort or pressure on the abdomen for several days. I've also been suffering from infertility for two years and a half so far and my Consultant has found a 3cm endometrioma on my left ovary and said I do have endometriosis. Now everything makes sense. She has recommended not having surgery and go straight to ivf. Besides, my TSH was above 2.5 so I'm on levothyroxine and I'm thinking that maybe the endo is messing my thyroid. Now that I've been watching your videos I realised I also have a strange muscular pain on the back of my left tight that I'm wondering that is also endo... This illness is so unpredictable and confusing that I do appreciate your effort and find your videos very helpful. I feel less alone and hope sharing this helps others. Thank you.

As a surgeon who has managed many patients with endometriosis the pain characteristic is unique and depends on the varying locations, extent, depth and severity of the adhesions, fibrosis and nodules when we take a look inside the peritoneal cavity

@endoemmm

10 ай бұрын

Absolutely. This was my personal experience with pain during an endometriosis flare / what it feels like personally.

I’m undiagnosed but you described exactly what I have experienced

I have a lot of similarities to what you have discribed. One personal symptom that I feel might just be me...curious about others... is that my pain comes in waves. I have intense episodes of cramping with pain for 2-3 mins, then stops and starts again 3-10 min later. This can be repeated for up to 2 hrs and then is gone! No one seems to understand why or offer any explanation. If you have any thoughts or other commentors, I would love to feel less alone.

@endoemmm

Жыл бұрын

Thanks for your comment and for sharing your experience! I haven’t felt that personally but would love to hear if others have! My pain lasts consistently for 45+ minutes ❤

@tracywilliams7523

Жыл бұрын

When I was 24, I experienced that cramping with pain you are describing ........but now since I've turned 26, my pain lasts over 12 hours....it is the worst, it feels like I am dying and i keep passing out during those hours.....and after that severe pain for that many hours, I get very weak and can't even walk.

@endoemmm

Жыл бұрын

I’m so sorry you experienced that type of pain for so long ❤

@marinazdxo

Жыл бұрын

this year i had my first laparoscopic surgery & found out i had stage 4 endo. i’ve had bad periods and severe cramps along with other symptoms, since i was 9. (i’m now 27). the pain would only be there the week of my period & then i’d be okay; once my period ended… in 2021, i had my first flare-up, a lot of my symptoms were a feeling of extreme cramping, nausea, really bad ibs symptoms, barbed wire that felt like it was tightening around my lower abdomen and my intestines. shooting pain in my lower back and i felt like i was being stabbed over and over in my ovaries; to the point they felt like they would explode. i also had 4 cysts that were removed this year, in between my uterus and my rectum (which i was told was possibly the reason, for all my ibs problems)… but it’s been 2 months since my laparoscopy & i’m still having pain. - my pain starts about 2 or 3 days after my period ends, and lasts for about 7-15 straight days, with constant pain. i’m on so many pain meds and natural remedies, just so i can go to work at my full time job. it’s really hard not having enough time to heal my body, and rest when i need to. i just want a solution; especially when i prayed surgery would’ve been my saving grace. but i’m finding myself in the same evil cycle.

@endoemmm

Жыл бұрын

@@marinazdxo So sorry that you experienced excruciating pain since you were 9 years old. The barbed wire pain is real and I'm so sorry you felt that alongside other painful symptoms. Hoping for a solution too for all of us to have some relief and pain management

Whatever you are saying is so on point! My blood pressure always rises whenever i have a flare up. I go through the same exact pain as you! It is not fun around here all, one of the worst pains ever!

I have what seems to be a flare with every period. A deep aching throbing pain in my lower belly, lower back and the front of both thighs. It gets really intense. I have thrown up before. I do feel warmer. I've had 2 healthy babies but I think it's because I had them young (19 & 23). I went on birth control about 10 years ago to help shrink a cervical cyst. It worked but I had a massive stroke so no more birth control. I also have fibromyalgia, and rheumatoid arthritis. I do get chest pain on the right side but I'm not sure which of my problems causes it. I have IBS. I haven't even been diagnosed yet. I have to get diagnosed soon. I lay in the fetal position in excruciating pain for about 3 days every month. I bleed through an ultra tampon in less than 3 hours. It's awful. And doctors at the ER treat you like crap.

@endoemmm

Жыл бұрын

Thanks for sharing your experience, Kimberly! I’m so sorry to hear your pain continues. I’m hoping that you find answers and pain management options that work for you and your unique journey 🤍 Thinking of you!

When I have a flare up is always in the legs, I just feel like someone is stabbing me there and then passing a lighter on them as you said, I always feel heat all over my body and I am sweating a lot, I need to ask someone to open all my windows to be able to breath deeper and most of the times I feel a dizziness to the point I feel I’m about to pass out. I also feel my legs are so weak that I cannot be standing, I immediately need to lay down wherever I am otherwise I would just faint. This lasts around 45-60 min. First I feel non-stop pain in my legs as described, after 20 minutes the pain starts to come in waves, so every 15 seconds the cramps intensify, in that moment I know the flare-up will end soon. When the pain is decreasing I also feel this coolness all over my body and I then the pain gradually disappears. It’s so exhausting and excruciating 😢

I also get that upper thigh/leg pain and it's a struggle not allowing it to ruin my entire mood for those days 😢 The IBS symptoms are REAL also. I thank God that I work mostly from home, otherwise I don't really know how I'd be coping right now...

I get severe cramps every period, the pain goes across my lower stomach and sometimes near my belly button. A deep throbbing/searing pain that can come in waves, and it feels like a serrated knife twisting in you. I've always had cramps since I got my period (grade 5 too). I get hot/sweaty/sick feeling. It's been bad enough to be audibly in pain. I end up having to use a lot of my vacation days to cover the first/second day each month.. I have very limited sick days :( At random points in my life (when I'm not on my period) I've had IBS flare ups at random where it feels like I'm going to faint or literally die. It's only happened a few times but that's a similar type of pain & experience.

Feel everything that you just said 😢 I’m in pain right now. Wondering how long this flare up is going to last!

It was after my second child via c section I started having this problems. First it was long periods went on the pill to regulate but picked up weight then on the injection then stopped. I am on nothing and have had long periods. But then started having pain in my legs and thigh. Recently lower back pain and like pelvic right side pain. Also nauseous while not having a period. Going to my gynaecologist in 2 weeks time

Its so sad so many of us have to edure auch pain. I went into shock after my most recent flare up its no joke.

@sherpeters

Жыл бұрын

And some people have the nerve to say they just want attention and drugs!! My heart aches, to hear this. I have a support group and i praise God for that group to know you're not alone.

Anyone else post hysterectomy and getting flares and daily pain?

I have many different symptoms but in an actual flare up it’s awful!! I’m in right now and can’t stop crying. For my actual flares it starts with slight pelvic/lower abdominal pain that worsens then goes through my low back, then rectal pressure, nausea (if it’s super severe then vomiting as well), shaking, chills, no appetite. Nothing helps the pain for me except hot baths with a hot wash cloth on my stomach, moving will worsen it.

@LifeWithHeather818

9 ай бұрын

My last flare was in January. Back in September it felt like one coming but it passed.

@LifeWithHeather818

9 ай бұрын

Flares also make me exhausted after depending on the severity and length of the flares. They used to be so bad they’d last 2 hours and I’d vomit for 2 hours then crash for 2-4 hours

@mony1852

2 ай бұрын

I’m on a flare right now too, I’ve been feeling like this since yesterday. The pain is intense, even cried during my bath 😢 the last flare I’ve had was last year around march or so!

You describe my endo flares for so many many years I am grateful and blessed to be a mom Thank you for chairing your journey

i like to describe my abdominal pain as if the strongest person in the world punched me in the stomach. it feels like day two of the worst bruise you’ve ever had where it’s sensitive to touch and movement like waking/sitting

@endoemmm

11 ай бұрын

Such a perfect description. Thanks for sharing!

@zainabb2880

10 ай бұрын

yes that's what it feels i can barely touch my abdomen cuz it's so sensitive and painful

I also have endo and I am afraid of having these flares they happen monthly normally the second day all day in bed and so much pain that takes over my whole body so washed out and vomiting , once I have vomited I am on the bath room floor unable to move waiting on the flare to end … I have to rest for a day or 2 at home and when I feel better I can shower when I go outside I often feel dizzy and cabin fever and not a part of the world as I have been in the endo bubble for a couple of days consumed by pain which nothing can take the edge of - although I could not cope without painkillers and bed rest

@hurtingfeelingsdaily

4 ай бұрын

I feel that endo bubble. Im in a flare now. Not on earth right now, but ill be back❤❤

I got painful intence flair ups from Endometriosis)

I started my cycle at 15. And it was horrible from minute one. Heavy flow, cramps, diarrhea, clots. I can remember my mom had some 800 mg ibuprofen. Id have to take 4 every 4 hours just to function. My mom also had this big old red medical book. It had a paragraph in it about endo. It matched all my symptoms. I dreaded my period. While other girls around me had no issues or cramps or nothing.😢😢 i get what i call "hot pops". Where its like someones lighting individual matches up my back and around my hips

Has taking pain killers ever helped the pain for anyone?

@TheWellnessAbbey

2 ай бұрын

Nope- it doesn't help my symptoms that much or it helps for like 2 hours and then wears off.

Have you had any surgeries that have helped with relief?

I don't know if I have endo but when I get cramps they are very intense continuous burning pain with sharp stabbing pains and it goes in my lower back and my thighs too and it makes me really nauseous also. And when I have pain with bowel movements and urination (more with urination) it feels like really painful pulling sharp tightness pain from inside as I am going and the pain gets worse until the end it's like I can't empty my bladder completely because it's really painful. Does this sound like endo I am a nit confused because when I mentioned my symptoms to my doctor she just said it's normal.

@endoemmm

Жыл бұрын

I’m so sorry that you experience painful periods and pains in your lower back and thighs. This definitely could be endometriosis but it’s best to talk with your doctor (or gain a second medical opinion) to gain insight and support for your pain. Thinking of you!

@zainabb2880

Жыл бұрын

@@endoemmm Thank You so much!

@saraeckelman8693

2 ай бұрын

Hey zainabb2880 I’m having these symptoms almost exactly, did you find out what was wrong? Hope you’re doing better💕

Do you get stabbing pain in your rectum and abdomen at the same time? I also have such bad back and shocking leg pain that I can't barely walk.

@LifeWithHeather818

9 ай бұрын

Mine will stab or feel like severe pressure

@hurtingfeelingsdaily

4 ай бұрын

I hate the rectum pain!! Omg i thought it was just me! I had to get a cane for the bad days

@shyofthemoon1175

4 ай бұрын

@@hurtingfeelingsdaily It's the WORST 😭

@alyssaperrin9176

Ай бұрын

Omg yes.. I have this also but I’m undiagnosed and I know there’s a correlation

Have you had any surgeries that have helped with relief?