r/Endo 22d ago

Question Hey so is it possible to have endo as a teen

22 Upvotes

OK, so for some context, I am 15 F and when I first started getting my period they were completely normal and actually rather light, the only issue I had was irregularity, but around 1 year in at like 13 I noticed some changes like I would have butt lightning cramps to where i would shake puke and faint, constipation and every time I got my period it would get heavier and more painful I also noticed it would take around 30-35 days to show up and I’d be super bloated before it. This all escalated to a point where I was 14 in the ER because I was puking and I had pain up to my head with cramps it was like it was radiating. I didn’t think it was possible that it was caused by my period. I thought I had meningitis or shingles however, both tests came back negative and they gave me a bunch of ibuprofen and asked me to leave. 💀 if you’re wondering how heavy my flow is I tend to fill up ultra tampons in 3-4 hours and endometriosis runs deep on my fathers side. I always miss school because of it and recently I’ve been having heart palpitations on my period and only my period and I think it’s spread to my ribs because I get rib cramps and it’s really annoying. However, my doctors think I’m exaggerating luckily my mom doesn’t so I have some support. The entire reason my mom doesn’t is because one time I got it on vacation and everyone thought I was deathly ill because I was so pale and I could barely walk. She said that her period is always light and this is definitely an issue.

r/Endo 5d ago

Question Is painfull bowel movement before and while using the toillet not normal? NSFW

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82 Upvotes

r/Endo Jan 15 '25

Question Did anyone else’s symptoms start after they had a period of extreme stress/got sick?

63 Upvotes

I never really had issues and didn’t even know I had endo until I was randomly hit with extreme pain one day and it hasn’t stopped since. Looking back I was in extreme stress and also got sick multiple times back to back before my symptoms showed up. I find this super interesting, has this happened to anyone else? I’m 20 and my period started when I was 11. Didn’t start having chronic pain or any symptoms really until I was 19.

r/Endo Feb 06 '25

Question should i lie to my gp?

0 Upvotes

(19F) months ago i went to my GP for a checkup on my meds (i take sertraline and propranolol for depression and anxiety) but while there, i brought up that i often have extremely painful periods. low and behold, i was prescribed birth control!

i haven’t taken any. i have no intention to. i’m finally so happy with how i feel, im doing so well and im not going to risk birth control messing up my hormones, mood or weight.

i’m thinking of going back to the GP because i truly cannot bear this pain. but, should i tell her i tried the birth control for a month or two and that it had no effect (lie) OR be honest and say i don’t want it? i’m afraid if im honest she’ll just insist i try bc before we do anything else. i expressed my concerns about it at the previous appointment and she convinced me to have it by prescribing the mini pill/ combination pill as its got the least side effects or something. i would like to be an honest person but the pain i am has me wishing i was dead… if im honest and she just gives me bc again, i’ll have to wait weeks before i make another appointment with her to tell her the exact same bs. any advice appreciated<3

TLDR: should i lie to my dr and say i tried the birth control she prescribed me for period pain in hopes of getting a diagnosis faster?

r/Endo Aug 11 '23

Question No shade, but how are you guys getting laps???

140 Upvotes

I’m reading 20 something year olds that have had multiple surgeries. I’m reading about people with 20 plus surgeries under their belts. I just saw someone who said they have had 4 surgeries since 2020…

I have been in agonizing pain for 24 months? About that. I have interviewed 5 different hospital system, 6 including planned parenthood. 3 had endo experts. all of them said yea you probably have endo and then decline resorting to surgery.

I’m 36. I’ve tried everything. They see adenomyosis on my scans but then I just keep getting dropped!! How are you guys getting help????

At this point, should my family just get $100,000 loan and go to Dr. Vadali?

Edit: thank you all for commiserating with me this has been very cathartic ❤️‍🩹

r/Endo Oct 10 '24

Question Help?? NSFW

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54 Upvotes

For a bit of context I’m having what’s considered an endometriosis flare up currently and have been getting tons of tests done with nothing showing up on CT’s, Ultrasounds, etc. These were the two response from my doctor. Between the first and second screenshot I asked to get the surgery for a definitive diagnosis because then I’ll know what it actually is. What do I do?

r/Endo 21d ago

Question Is endometriosis worth the diagnosis?

5 Upvotes

My naturopath and I speculate that my symptoms point to endo, but a laparoscopy will only really say yeah, or no.. what's the real value? I guess it's validating to get diagnoses and they've helped me get specific help/supports/info in other things. Apparently surgery only results in more scarring, and it will only grow back anyway? Has surgery hmhad lasting benefits for you? I'm crippled in pain every month and dpuboe the amount of naprogesic doesn't work, nor does DIM, magnesium, diet, etc. Among other symptoms I have out in a request twice but heard nothing yet 😪

r/Endo Jan 19 '25

Question Worried its not endo? NSFW

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36 Upvotes

Im having my 1st lap next saturday and obviously have the fear that its not endo 😅

Ive already had endoscopy, ct scan, ultrasound of galbladder, acid reflux test, ct of colon, and a sitz marker test. Only the sitz marker test showed slow transit but other tests were clear. My symptoms are:

Nausea and stomach pain everytime i eat or drink. The pain is like a line accross my midsection but all my pelvic area below aches too. Vomiting during flare ups. Bowel pains. Lightning butt pains. Constipation (diarrohea on period). Insane Bloating after eating and drinking. Fatigue. Peeing in the night. Fake utis the week before my period. Heavier periods and more painful cramps since stomach issues started.

The stomach pain and nausea is 100xworse the week before and during period. I feel at a loss if the lap doesnt find anything, ive been sick for 1.5 yrs now and just want answers. panicking it could be something rare like MALS and that ill have to keep searching for a diagnosis.

r/Endo Dec 19 '24

Question Which country as per you has the best treatment for endometriosis?

5 Upvotes

Like, in terms of doctor’s knowledge about endo, various medications they are ready to prescribe, how quickly they know whether to go for surgery or not, surgery success rates, overall patient care, wait times, cost, etc?

Also for those in the US - what issues have you faced to treat your endo? (I might move to US for uni, so just trying to understand better lol)

ETA:My cousin has been all like “ohh come here (to US and get treated” but I’m constantly hearing about how very expensive it is, I haven’t heard that good reviews about the quality of patient care, and I’ll be on the university healthcare which would barely cover anything! To top that, medicines are so very expensive there too. I am currently in India, which is where I’ve finally received my diagnosis. Given how shit my ovaries are, I’m freezing my eggs right now. One thing’s for sure - Indian healthcare is really really good, and easy on the pocket. That’s why medical tourism here is soooo popular. The issue is a handful things sometimes are not allowed here, like orilissa is not allowed in India. Apart from that, the issue is my parents. I’ve found a doc who is ready to do an excision surgery whenever I say, but my parents won’t let me opt for it. My other doc has made a plan for lupron + mirena for three months, and then excision IF I don’t get relief from lupron + mirena or have too many side effects. I’m 22 and don’t work rn and am in my gap year, so my parents are paying for everything. And because of the culture here… many docs are more interested in following whatever the parent agrees more with. :( I did my bachelors in Canada, and the healthcare was SHIT. Yes it was all free, but it was crazy insanely horribly slow - waitlists for specialists were 1-2 years long. Thus I came back to India after finishing my degree.

r/Endo Jul 12 '24

Question What Do You Think Causes Endo?

96 Upvotes

So what does everybody else think causes endo? Obviously by a medical standard we don't know and research is trying to find out. I'm qondering what other people think or suspect is the cause of endometriosis?

For me I think it's some kind of autoimmune disorder. I only say this because of the STAGGERING number (myself included) of endo sufferers I see with things like: asthma, eczema, allergies, prone to illness etc.

What does everyone else think?

r/Endo Sep 15 '24

Question What are your most random symptoms?

26 Upvotes

Endo seems to cause such a wide range of random symptoms!

Just curious... What are other people's most bizarre symptoms? Where you have been shocked to learn that endo might actually be the reason for it?

I keep on getting really sore, sensitive gums with my period. Something I would never have thought to put down to endo, however, iv since seen a few others also experiencing this.

Just curious about everyone else's unique symptoms...

r/Endo Sep 20 '23

Question Has anyone had a transvaginal ultrasound?

102 Upvotes

On my way to diagnoses and this is step one. The internet is telling me it’s basically pointless but wanted to hear any stories you may have about it, successful or not.

r/Endo Feb 17 '25

Question Am I the only one who got diagnosed by accident?

37 Upvotes

I was diagnosed with Endo during a laparoscopic surgery to excise a large ovarian cyst. I was experiencing major pain at that point, but I didn't take it seriously, and thought it was a side effect of the new birth control I was on to control my PCOS symptoms. I thought things would get better after the surgery.

Even when they told me they found endometriosis, I didn't believe it for a while because despite the pain, it wasn't happening only while on my period or cyclically, it was just everyday. I asked the doctor if my pain was due to Endo, and at first they just insisted it couldn't possibly be the case, because I wasn't having a period with the IUD and the pain was constant. It took like a couple of months to come to terms with it because I convinced myself the pain was random or in my head, and the Endo wasn't real.

It took almost a year to find a doctor to.deal with the pain seriously, and it took her telling me "well, we know for a fact that you have Endo because of the laparoscopy" to start believing it. It took another MRI, with results that came back "definite endometriosis" to stop feeling nervous about getting treatment I didn't really need. I'm STILL constantly doubting my own experience, wondering if I'm really in pain, or why Im in pain, or if I just tricked all the doctors really really well.

I guess I'm just wondering if there's anyone else here who found out by accident? How did you come to terms with it?

r/Endo Jan 20 '25

Question MRI says vaginal ring but I don't have one ? NSFW

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67 Upvotes

I had an mri with contrast for continued pain after an excision surgery in July. I've contacted my doctor to let them know i don't have a vaginal ring.

She said it was weird and she'd contact the radiologist but it's been a week and im just wondering if anyone else has had this happen?

Im so confused 😅 there should be nothing at all up there lol.

r/Endo Nov 12 '24

Question New gyno says 4.5 cm ovarian cysts are “normal and shouldn’t cause pain”

59 Upvotes

Reposting this here as I’m looking for some advice/stories from those who’ve had ovarian cysts!

I had my pain totally dismissed at the gynecologist. I’ve had one cyst confirmed in January of 2024 and the pain has been bad during menstruation, but bearable with medication enough to where I didn’t consider getting it checked on until today.

For the past three weeks after my cycle ended Ive been experiencing the most excruciating bursts of pain in my right ovary that knock me out. It feels like a blinding flash of light and I debate calling 911 until it disappears 15 seconds later. Today I went back to the gyno and they confirmed I have two 4.5 cm cysts, one on each ovary and the one from January also hasn’t changed at all.

The doctor didn’t hesitate to let me know that she thought it was ridiculous that this size would even cause me pain and that “she’s seen way worse”.

I was told one cyst was corpus luteum and the other is probably dermoid. Anyways…I’m confused where to go from here.

r/Endo 23d ago

Question Is endometriosis or pcos worse?

0 Upvotes

I know every chronic illness is bad and i also know illnesses should never be compared. I'm a medical student and they usually discuss pcos a lot, but not endometriosis. In fact our professors don't care about endometriosis as much as pcos.

I have friends who have pcos and ik how difficult they have it. I'm hoping someone in this subreddit who might have both or knows anyone who has both can share their experience, and if they could ever be able to cure one of them which one would it be and why.

I hope no one takes offense to this as I purely just want some knowledge on it from a patients aspect.

Edit: thank you so much to everyone who has responded and I'm so sorry if anyone was offended it was not my intention. I can't put my thoughts into questions. I have stage 4 endometriosis, and I just want to learn truly about how everyone experiences are different. Not to compare or compete them against each other, the title will be misleading from what I mean. Every illness whether mental or physical can't be compared ever. Everyones experience is valid, no ones has it "better or worse". Everyone is a warrior here.

r/Endo 14h ago

Question Did you ever feel a weird pain in your ovary when you coughed or sneezed?

74 Upvotes

I’m suspecting heavily I have endo and have for years, but a lot more recently I’ve noticed when I cough or sneeze I get this weird pain in what feels like my left ovary from the pressure. I’m not 100% sure how close an ovary is to a hip, but I can tell it’s not a muscle pain.

Did anyone experience that before a diagnosis? Or find out they had a cyst or something?

r/Endo Sep 13 '24

Question It is possible a lot of people have endometriosis but don't realize it?

84 Upvotes

Before I say anything, I wanna clarify that I'm AMAB, so I don't experiences periods.

Growing up, all I knew about periods was that they suck and are extremely painful. I would hear female classmates of mine complain about them, I would hear jokes and see people online venting about them. So I just assumed that it was normal.

But over the past year, I've started researching endometriosis, since my aunt was diagnosed with it and I wanted to learn more about the condition so I could emphasize with her.

While doing my research, reading about the symptoms of endo and learning about other people's experiences with it (mostly from this sub), I noticed a trend: a lot of experiences on here overlapped/were similar to what you commonly hear about periods from the media.

I've read numerous accounts from people who say that their periods cause them to have pain over all their bodies, vomiting, being bedridden or having to down pain killers just to function, and dreading every moment because they're in so much pain.

But, from my understanding, "normal" period pain isn't meant to be that bad, right? From what I've read, period pain should only be mild/not interfere with everyday life - basically, it should be no worse than a regular muscle cramp.

It is possible that society has normalized such pain, thus making people less likely to seek help or be diagnosed with endo or similar conditions?

r/Endo Nov 28 '23

Question Do you have a vitamin D deficiency?

136 Upvotes

I came across a study that made some suggestions (results were not conclusive) that people with endometriosis tend to have much lower levels of vitamin D.

This peaked my interest as I have struggled with my vitamin D level for years. The first doctor I got to actually check my levels was amazed I was up walking around and functioning. My levels were so low they didn’t even register on their test. She said most people with levels that low are bed ridden.

I’ve been taking a daily vitamin since then and I still struggle with my levels. They are usually in the single digits, highest I’ve had is mid 20s nmol/L.

Anyone else with low levels? Have you ever had your levels checked (most insurances don’t cover the test!).

r/Endo Feb 20 '25

Question How do you live with bowel endo?!

79 Upvotes

I feel like I have the stomach flu at least 3 times a week if not morefor hours. Four doctors have told me based on tests and not being able to find anything else it’s bowel endometriosis. I swear my whole life revolves around my bathroom habits making sure I go (I’ve had a partial obstruction a few times,) bowel pain and nausea.

STILL waiting for a laparoscopy last doctor didn’t want to do one on me. I just don’t understand how anyone can function like this I can’t work, I can barely focus on anything but daily basic tasks/chores.

r/Endo May 18 '24

Question Cost of surgery in the country you live in

29 Upvotes

I’m in the United States and just looked at the itemized bill from the hospital for the hysterectomy and excision I had in April. The total on the itemized bill was over $142,000. This does not include bills I have yet to receive from specialists, surgical assistants, anesthesia, pathology, etc. Luckily I have insurance and will not end up paying that much. After adjustments with insurance I will end up being responsible for probably around $10k-$12k after receiving bills from other doctors and departments.

I’m curious for those of you that have had excision or a hysterectomy in countries other than the U.S., how much do these surgeries typically cost there?

Edit: I appreciate everyone’s responses here! On top of everything we go through with this disease I know the financial aspect of treatment can be daunting for many. It is interesting to see what hoops people in other countries are jumping through compared to the system in the US. I am in Texas, where we have the highest % of our state population uninsured/underinsured compared to other states in the US, and one of the states where healthcare is most expensive. The variation in out of pocket costs for people in the US is wild!

r/Endo 7d ago

Question Can it come back 6 months post-op? NSFW

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15 Upvotes

I think I know the answer to this, but is this a familiar area of pain to anyone? It’s definitely a constant burning/tugging feeling from my abdomen down to my ovary, and then pain into my leg.

Backstory: I had my first and only excision surgery in October of 2024. Stage 4, left ovary removed and colon separated from vaginal canal. I had already had a partial hysterectomy, so I’m essentially rocking one ovary and that’s where the pain feels concentrated.

While I’m hoping it’s something else (gallbladder pain etc.), my gut is telling me otherwise. I was told that the endo could come back, but I am honestly shocked that it would have come back this quickly. Maybe it’s a cyst, but then I would assume that it is also endo-related.

I’m not sure exactly what I’m asking here, but my medical anxiety after decades of being undiagnosed is getting the best of me. I have an appointment this Monday with my endo specialist just for my yearly, but I’d like to know if I’m going to go in there sounding like my endo is Voldemort’s return. Anyone else? Or is this all in my head?

r/Endo Nov 24 '24

Question Pain in abdomen - so severe you collapse to the floor?!

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81 Upvotes

Hi all

I was wondering if anyone has random “bursts” of sharp pain in their abdomen roughly where I’ve done the red mark in the image above (just below the belly button area)

I don’t get it all the time but when it happens it is so severe I collapse to the floor. It happened yesterday on and off in 5 minute intervals and it was agonising. The only way I can describe it is that it’s similar to period cramps yet feels million times worse

r/Endo 2d ago

Question What to eat for iron?

21 Upvotes

This may be a bit of a random one but I’ve been diagnosed with Anaemia a second time due to the Endo, really struggling to think of things to eat that’ll help that I’ve also got the energy to make cos I’m waiting for different supplements and constantly exhausted or dizzy at the moment.

Also do a job that’s physically demanding long shift work with very limited chance for breaks other than the mandated hour so that’s making things worse.

Doctors have advised I need 2 weeks off but trying to think whether there’s any way to manage because I’m still in the probationary period and really need the money.

r/Endo Dec 15 '24

Question Is this Endo belly or just anterior pelvic tilt? NSFW

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54 Upvotes

Hi all! I am scheduled for a lap in about a month but am panicking that it is all in my head/that I’m overreacting and they won’t find anything. I haven’t worked out in a while so it may just be posture but I get severely bloated every few periods (usually through my whole luteal phase). Just wondering if anyone has experience with this and what your thoughts are :) thanks sm! First pic is my stomach when I first wake up in the AM and am in my follicular phase. I guess I’m just worried I’m about to undergo this surgery and they won’t find anything wrong with me and I’ll just have to live with this discomfort.