Endometriosis stories: 'It was like cement had been poured into my pelvis'

[@drvortex]

My partner was diagnosed on stage 4. She lost a kidney and part of her intestine. This is a very painful and dangerous disease and it should be treated accordingly. The amount of misinformation and doctor gaslighting its staggering. Hope someone finds a cure soon.

[@mzfitmama2361]

It really does feel like barb wire rubbing. Contractions of the pain is debilitating I pray women like me find a cure in our lifetime 😢

[@claudiaroy9455]

I had to lie to my doctor and tell them I was planning to have babies again in order for them to do something else and not only give me the pill to regulate my period and period pains. :(

[@pameladelarosa3059]

Its hard for me to watch videos like this because it envokes two paradoxical feelings: intense rage and sorrow

[@stephyscolaro]

please why does this not have millions of views

[@irishcowgirl21]

So grateful that more awareness is coming out for endometriosis. It was first suspected in April 2017, finally got a diagnosis through lapraoscopic surgery July 2020, I haven't been able to get pregnant and I just turned 38 in July. What I basically go through is pretty much a nightmare, the only good thing is that my mom also has the condition and she's been a great support

[@misspenneylane]

This was really amazing! The amount of endo articles I get sent that are full of misinformation is devastating. This was genuinely really informative and I'm so happy to see it. I have suffered really badly with endometriosis and I feel a little more seen with this article.

[@AngelJ-d7q]

I hope this talks to someone. Im from Indonesia and i have experience severe menstruation pain since the first year of my mens cycle at age 12. It’s been 9 years of bed rest & school absent everytime i got my period, tried medicines but it didnt help, and i thought i would be suffering for endometriosis until who knows when.. Until this previous year, I was moved to get myself baptized. My period pain stopped the month right after it🥺 still couldn’t believed it today. Now when i got my period i can stand, walk, and do normal activities. I feel so undeserving, but God is so good❤ Jesus is so good. And He’s still doing miracles.

[@saraislam3026]

I feel so sad! So sad that the world at this times could not come with a solution

[@ClaiLou22]

I have this same feeling often, it only became so bad after taking multiple antibiotics, so it's absolutely gut microbiome related, more research on this is desperately needed.

[@annamariateplan4102]

I was going to have a surgery but then we had to postpone it the day before. While i was waiting for my surgery to be scheduled I went on a Whole Food Plant Based diet. Cut out all the oil and sugar and animal products and started to walk 90 minutes a day. I dont know how but my symptoms improved so much I dont even need painkillers to get through my period anymore. I wish I had known this earlier but my gp's suggestion for treatment was to put in a coil. She never asked me about my diet or lifestyle at all.

[@steffc8611]

This diet helps my symptoms too but sometimes surgery is still necessary. In my case for example it’s deep infiltrated into my bowel which needs removed as it can cause bowel blockage, but do agree the diet helps with pain and other symptoms

[@priyadurai5803]

hi i was diagnosed is stage 3 endometriosis , i had my surgery back 2021 , it did not grow back but still fighting with infertility 3 iui and 2 ivf failed , so i feel there must be survey asked from all endometriosis survivors to tell about their past lifestyle before diagnosis,food habit , stress , exercise if in case there is an imbalance in that can educate future generation to follow certain lifestyle to avoid this condition , the best way to cure endometriosis is to avoid three things sugar, diary , gluten

[@karatequantum1095]

i only have this since i move to uk. when i return home in southeast asia i wont have this problem. i now try to eat the same diet and to try to sweat as much as before. western diet full of dairy and coffee dont suit me 😢

[@Anonymous-LRW]

My Endo is so out of control the last 2 years. It sucks the life out of me. The medication my gynae perscribes causes water retention and weight gain. This is not a life I want to live forever. May God heal send a cure so that we can be healed in Jesus name.

[@raynaaustin9530]

My heart goes out and completely understand. I was first diagnosed when I was 21 and it was sever by then and no Dr would listen. I have had many complications since and 3 surgeries. I have done many natural remedies. Which do help but not a cure. I'm 44 now.

[@veronicaburkey5126]

That’s the part that scares me, I see so many women who have had to have multiple surgeries. I’m afraid.

[@stephanieoregan]

When I was 23 my dr told me to get pregnant and that would help. I ask if she's going to help me raise it, I was single at the time lol

[@francescanorton9805]

I was put in surgical menopause for 6 months. I wouldn't do it again as an option for my endometriosis. I'm having my second operation in June 2024 and I'm managing my endometriosis symptoms with pain relief and generally keeping myself healthy

[@marvelousmrsnunya]

What's worse than the physical pain is having to endure the way we are treated when we try to seek treatment. I feel incredibly unseen by the medical community, and none of the treatments offer a long term solution. It seems to me that the state of gynecology is not much more evolved than a local butcher shop...

[@SongsbyCharleneApril]

My experience has been horrible! No Dr., is taking my pelvic pain seriously, some days my pain is so intense I just want to cry. They keep finding cysts and fibroids in the ultrasounds, then they just dismiss the pain and tell me after menopause I should feel better. And these are female Gyne Dr.’s telling me this. Clearly they have never experienced these issues in their own bodies, so- they don’t care.

[@veronicaburkey5126]

Mine wants me to get a hysterectomy. But so many women still have issues. I got put on birth control until it no longer worked. Now on progesterone. That did help the pain. It doesn’t always help with the cycle.

[@SongsbyCharleneApril]

@@veronicaburkey5126 taking a few drops each morning of Lugol’s liquid iodine switched off my pain/discomfort from endo and other issues. I would say my discomfort is like a level 1-2 each day, barely there. Where as some days it felt so painful I was walking around like a 95 year old. 😆 Turns out I was severely iodine deficient. Iodine comes from eating shellfish like Mussels, etc., I do not eat any seafood. Seafood is not in my diet and never was.

[@acerpalmatum6446]

Wait....this doctor said endo patients have increase of laptate (sp?) which is produced from body breaking down carbs. So wonder if low carb diet would alleviate pain. I'm going to try it.

[@michaelangelo16240]

Low carbs to no carbs at all works for me as far as the pain.

[@LC-it4ue]

Horrendous condition! Had it for 34 years …!!! Pain relief stored everywhere. Fatigue off the scale & being told I am healthy & no issues!!! Whaaaaattttt!!!! Laparoscopy & Laparotomy found ovary & endometrioma (blood filled cyst) lodged in bowel! The suffering is off the scale both physical & mental. The good news is since menopause things have settled down.. phew 🙏 Best wishes to anyone with this illness…❤️

[@miglenaivanova1078]

Hi,wow,such a journey:( I have being diagnosed 6 years later after my symptoms started, only because I insisted to open up the burst Endometrioma which they said is fine and ur turned I had stage 4 endometriosis. Now in later perimenopause, probably full.in few months eating plant bade diet exercise, no sugat alcohol, no gluten, but still.my stomach is so bloated 24/ its been like that for more thsn 2 and a half years Currently waiting for my appointment with the surgeon in the beginning of February to discuss full hysterectomy Hoping this will speed up the disappearing of this horrible pain,bloating and constipation.

[@silviafernandes1389]

I bet lot of women are just praying for menopause

[@hayleygebhart1764]

I have endometriosis for over 30 years. it took 6 years to my doctors to believe me.

[@daimici_kuulei_aloha]

I had Endo. Now it comes around when I'm stressed.

[@jessica386m]

Omg!!! This is exactly how I feel and all my doctor wants to do it put me on birthday control!!!

[@abarceno]

hello. i'm from the philippines and i was diagnosed last january 2024 with endometriosis. i am 46 year old now but i started feeling the symptoms when i was 30 y/o. i just snub the symptoms because i though it was part of the againg process. aside from endo, i also have a cyst on my left ovary. my obgyn prescribed vissane and do not recommend checking the cyst. i still feels cramps, spotting everyday. i will have my next tvs this april 2024 and hoping that i will get a clearer healing process.

[@sub11511]

I have been taking vissane for the last 4 years... No permanent cure :(

[@abarceno]

@@sub11511 😔 same here 😔

[@sub11511]

@@abarceno any cure ? :(

[@abarceno]

@@sub11511 hello..after my 2nd tvs my obgyn told me that endo shrink a bit and no changes with the size of my cyst..they also saw a small myoma..they just told me to continue taking vissane but i still have pain, spottting and nausea..and then my ob told me to just wait for my menopausal and everything will be ok 😔

[@henks0405]

​@@sub11511i have endometriosis as well, diagnosed last January 2024 too. I've been advised to take visanne and I'm on my 6th month now. Has it improved the size of your endo? According to my tvs, the size still remains, but dissolved my cyst on my right ovary.

[@MsuthuNcapayi]

I’m 48 and in bed still struggling from this sickness it causes paralysis for me how do we overcome . I’ve been thru most of these experiences been told to have more babies

[@jasi7961]

I also had severe pain becoz of endometriosis. Also i was trying for a baby. Now i got pregnant

[@Shelb13v]

I was glad to see that she turned to herbal medicine. I wondered about shepherd's purse and lady's mantle specifically since the common complaint is that it feels like labor. I hate that i have friends that were told they had endometriosis and had those surgeries. So hard.

[@kristenlynn1296]

Look into PPARy inhibitors - I am researching foods or herbs that have these ligands. Gut health is a factor as well which exasterbates inflammation.

[@bernadetthegedus7591]

GPs are always says that everything/all your symptoms are ‘normal’. NO its not! I have cluster headache, and when I asked my GP to send me to neurology to find out properly why I have this headache she said that ‘ its just a normal migraine’ … yea… lasting for 3-4 weeks constant headache.

[@YasminYoruba]

Be strong women ❤

[@Jejujejuzero]

Please do not leave Adenomyosis, sister. We are the same.

[@ceciff1357]

Yes. Please.. there is less known about adenomyosis...

[@brinicole2999]

I wish they had AT LEAST a better idea of how to treat us but who is even studying endo?! HELP US

[@listiani4810]

I also have endometriosis, after IVF I found out. Because I often try to program to have a baby but it doesn't work. The stomach likes to suddenly ceramics and to stand very sore like a 100-year-old woman. I've had curettage and apparatus as well as hestrostomy. Now I'm 45 years old. Can it be a deadly cancer????? This always covers my days

[@veronicaburkey5126]

It made my pregnancies dangerous. My 1st I had a 75% chance of miscarrying. My 2nd I developed HELLP syndrome and pre-eclampsia. We almost died. My 3rd I had pre-eclampsia and almost died again. Then there are the miscarriages. I’m afraid my daughter may have it. I hope not. She’s had 2 miscarriages.

[@SummerTyme2023]

Pregnancy does not help!

[@irisbrejean8019]

I have the coeliac disease… Could that be correlated?

[@Melosnation]

My mum has endometriosis

[@brinicole2999]

Too bad seeing a herbalist is SO EXPENSIVE.

[@zeefrancois5407]

Information is super interesting but I don’t like how majority of the doctors focusing on this disease are male doctors where are the women ?

[@Daughterofthehighestking82]

I had to go through two male gynos, one tried to sell a testosterone under the skin rice pellet, the other a prolapse vaginal surgery for my “future” husband. I was a 1/5 btw, and I was misdiagnosed by pain management. Finally the third gyno (male) caught it on the transvaginal ultrasound which radiation said was “normal” as they were looking for their misdiagnosis of uterine fibroids by the first gyno. 😡 I’m scheduled for a hysterectomy. My mom and grandma said they felt like they had a tooth pulled. I have a boy and girl I’m raising by myself, I’m ok with it. He wants to save my ovaries if possible to stop early menopause.

[@amycarroll6964]

I had to women doctors and they have done nothing

[@Chut.1.1.1]

Yes !

[@maryjoseph9006]

‼️ search for study…The effect of SARS-CoV-2 vaccine on the symptoms of women with endometriosis

[@majalis3739]

Taking these was a mistake, but what can we do now… : (

[@nriched]

I started my periods around 11 years of age . Always had horrible cramps .used to miss few days of school every month. Went to several doctors never got an answer. Once a doc gave surgery related pain killers to me. Sudden sharp pain during bowel movement. At 29 now I am diagnosed with endometriosis fibroids and adenomyosis. Can't see any other solution than hysterectomy

[@sylviamirandah1394]

Don't lose hope and don't rush into the decision of having a hysterectomy. I'm 41 and recently had two myomectomies to remove multiple fibroids. Endometriosis was an incidental finding during surgery. I think the causes for fibroids, endometriosis and adenomyosis are the same

[@NewBeginnings000]

​@@sylviamirandah1394i found out January 2024 that i have approximately 9 fibroids. My ob-gyn highly believes i have endometriosis as well. The pain... oh goodness! I already live with Chronic disease and this, adding to the list, is just draining me. I have started on birth control and referred to a Chronic Pelvic pain clinic. Just waiting...

[@vibes811]

Endo sister here❤l

[@nn-eh9ok]

Avoid gluten , dairy n sugar... there wont be any endometriosis left

[@donatellanicolini5877]

I am coeliac, so I don't eat any gluten, I am allergic to dairy so I don't eat any dairy and I cut out sugar a long time ago. Still have endometriosis and adenomyosis as well.

[@nn-eh9ok]

@@donatellanicolini5877 Which oil do u use for cooking?

[@donatellanicolini5877]

@@nn-eh9ok I don't use oil for cooking usually, if I have to (rarely) i only use EVO (I'm Italian)

[@janelbarbee5927]

Do i need to get surgery or can diet change help

[@solangelalebron1348]

The cancer sound like the word canker?...Don't be dumb. [The cankerworm is also referred to as inchworm or looper, as they move with a distinctive “looping” motion. They do not bite or sting, but many people are intimidated by the overwhelming number of them.]

[@rinavictoria3335]

Omggggg

[@rinavictoria3335]

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[@comacuma2869]

THATS HOW THE UNPOPULAR LOOKS LIKE

[@ArchStanton-o6m]

Whamens stuff

[@rinavictoria3335]

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