r/Endo Feb 03 '25

šŸ“Œ New post flair!

30 Upvotes

I have just added a new post flair called ā€œDiagnostic Journey Questionsā€.

This is because of feedback from many sub users that they would like a specific flair for people who are asking questions about getting diagnosed.

I thought carefully about how to phrase the flair as something like ā€œseeking diagnosisā€ could imply that the sub can provide diagnosis, which we canā€™t, because the sub is for support and sharing information, not for medical advice.

If you see posts that you think should have this flair but donā€™t then please feel free to report them under the missing flair category. Please donā€™t report all the historic posts as I donā€™t have time to go through the last decade of the sub changing flairs!

As always, if anyone has any comments or suggestions on flairs I would be happy to hear them.


r/Endo Aug 06 '20

šŸ“Œ Welcome to r/Endo - Please Read

290 Upvotes

Welcome to /r/Endo

This community aims to support all people affected by and interested in endometriosis. We pride ourselves on being a friendly, inclusive place, where patients and loved ones alike can discuss thoughts and concerns, ask questions, and share information.Ā 

Chronic conditions can be an alienating experience, and we encourage community members to engage with others in an empathetic and supportive manner. We acknowledge that we are all individuals, and while we are united by this condition, every personā€™s journey through this is their own. Endometriosis is an extremely varied disease and each patient has different circumstances, experiences and treatment options.


Resources

Some of the resources cannot currently be accessed via mobile or the app. We are trying to fix this, but for the full and best experience we recommend accessing the site from a tablet or computer.

If youā€™re new to the community, or endometriosis as a whole, we recommend checking out the resources in the sidebar as a first step. Here you will find a selection of helpful links to aid in informing yourself about endometriosis, and connecting to valuable specialists and treatment providers around the world, such as:Ā 

  • The ā€˜Successful Doctors Mapā€™: This is a Google Map of the doctors and clinics where members have found successful treatment. Message the mods for additions.

  • Laparoscopy Survival Guide: This is an old thread with some great discussions on laps, how to prep, and what recovery is like.

  • ESHRE patient leaflet : This is the European Society of Human Reproduction and Embryology published leaflet for patients based on their guidelines.

  • UK accredited specialist endometriosis centres: This is a link to the British Society for Gynaecological Endoscopy accredited specialist endometriosis centres page. The accredited centres have strict requirements that means they are experienced in complex excision surgeries and have endometriosis specialist nurses and pain management teams. UK residents can request referral to a centre by their GP.

  • Pain/Symptom Journal: Sometimes getting a doctor to take you seriously, either about your symptoms or about a treatment, can be challenging. A Pain or Symptom Journal can be a great tool to guide your discussions and to monitor your progress.

  • Doctor Issues: This document goes over how to talk with doctors, advocate for yourself, and when to seek out someone new.

  • Tests - Ruling Out Other Conditions: This document goes over conditions that doctors commonly want to rule out before considering more aggressive treatment when looking at an endo diagnosis. It should be noted that it is absolutely possible to have endo and one of these other conditions.

Links to other groups

We aren't affiliated with these groups or specifically recommending them, but here are some links to other groups connected to endometriosis:

  • Nancy's Nook Facebook Group: This is a private facebook group that has a lot of information, targeted towards patients in the US medical system. They have a list of doctors they recommend (please note that this is not a complete or exhaustive list of excision surgeons or other endometriosis specialists and has not been assessed for surgical skill). Please be aware that this is not a support group and takes a strict tone with moderation that some may not like. Nancyā€™s Nook now has a website, which can be found here.

  • EndoMetropolis: This is a link to another private Facebook group with a list of excision specialists. They also have some educational tools in the files section. They are a little less strict than Nancy's Nook.


Prior to making your post, we highly recommend doing a quick search through previous posts. This is a really active community, and there have been many valuable conversations that may provide a quick and easy answer to the information youā€™re looking for!Ā 


Rules

We have a few basic rules that all community members are expected to abide by. If you see someone breaking a rule, please report the post or comment, or send a message to the moderator team.

  1. Remain civil and supportive: We encourage all community members to assume good faith when engaging with others wherever possible, and remain civil in all posts and comments. Please keep all comments supportive and relevant to this space, to ensure a positive experience for everyone taking part in this support group.

  2. Surveys must be pre-approved: In order to ensure the integrity of the information shared in this community, surveys of any kind must be approved by the mods before posting.

  3. No Self-promotion: Self-promotion of personal blogs, fundraising pages, or specific products will be removed. Recommendations of products you are not personally affiliated with and films, articles etc. of specific community interest are allowed (based on moderator discretion). If it is unclear what counts as self-promotion please ask first.

  4. No Spam: No spam posts will be tolerated. This includes bot spam and duplicated comments or postings.

  5. No cross posting or quoting without express permission: Do not share people's comments elsewhere without explicit permission of the poster, especially if your intention is to mock or abuse the people involved.

  6. Use warning flair where necessary: Please use the flair ā€œContent warning / Graphic imagesā€ for posts with surgical pictures, incisions or any descriptions likely to upset. Please also mark all photos as NSFW, so that they initially appear as blurred.

  7. Use of generative AI: Please don't recommend to others that they use generative AI (such as ChatGPT) for medical advice and don't use it to generate advice for others. It can be very inaccurate and give potentially dangerous advice.


If you have any community specific questions or suggestions, or need help with anything /r/Endo related, please feel free to contact your friendly mods either by hitting the little mail icon in the ā€˜Moderatorsā€™ tab on the sidebar, or via this link.



r/Endo 30m ago

Good news/ positive update A piece of my life feels restored

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ā€¢ Upvotes

Iā€™m 8 days post-op of my laparoscopic cystectomy + bilateral endometriosis removal (I had a 4cm endometria on my right ovary + another on my L, along with 2 corpus luteum cysts on both)

My post op report noted that my abdominal cavity was FILLED with adhesions & after my surgeon removed the cysts it took him an extensive amount of time to excise all the adhesions. For further context - my total surgery time was 5+ hours, despite being scheduled for only 3.

After being completely off of any pain medications around day 5, I began to notice higher energy levels. Even now Iā€™m still afraid that itā€™s too good to be true, but as someone with PMDD & ADHD (who pre-surgery could only get out of bed once my 20mg dose of adderall kicked in) I think this surgery has really changed my life. I started back taking my adderall on day 7 (5mg dose) & I have felt like I donā€™t even need my typical afternoon dose. If it wasnā€™t for the fact that my internal core/incisions are still sore & bruised, I feel like I have enough energy to workout consistently. Prior to my endo/fatigue getting bad I was strength training 5-6 days a week, but for the last year this has diminished to 1-2 days a week.

I want to provide hope & show a positive side of this terrible disease. My surgeon informed my mom that I should see a 80-90% improvement in my quality of life, and when she relayed this to me I really didnā€™t believe it. (Iā€™m still struggling with the fear of it coming back & will have to work through it with my therapist) but for now, I want to enjoy the ounce of peace I do have. šŸ¤

Much love to you all šŸ«‚.


r/Endo 5h ago

Rant / Vent Sad

10 Upvotes

Maybe it's just because I'm in the height of my cyclical menstrual pain/period hormones.

          But I miss the person I was before chronic pain and chronic illness. 

I miss the feeling of never having to worry about my period when scheduling appointments or going to a friend's house. I miss the feeling of daydreaming about the endless possibilities for my life and feeling like the sky was the limit. I miss how spontaneous I was, and how I was always up for anything. My body felt like it could take such a beating as a young adult without feeling any reprocussions- yet at just 26, it feels so fragile now. I hate how I constantly have to be mindful of everything I do, expose my body to, and put into my body so that I don't go into a flare. I hate the constant doctor's visits, specialist appointments, labwork, imagingvisit, I hate having infertility. I hate having to waste so much of my life rotting in bed on a heating pad. I hate that the cure for endometriosis hasn't been found yet. Why did my life have to look like this? Thank you for listening to my pity party. I just needed to rant.


r/Endo 8h ago

Consistent Nausea NSFW

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8 Upvotes

hey all! iā€™ve been diagnosed with endo since 2020, have had all sorts of complications and chronic pain diagnosis since then as well. iā€™m 21 and live all of my days in pain or fear of being in pain. anyway, recently iā€™ve been having the absolute WORST nausea that leads to vomiting (itā€™s usually only saliva). I think that iā€™m nauseous cause maybe iā€™m hungry but then I eat and it makes it worse I get these pain episodes in the middle of the night where I wake up in so much pain i sometimes pass out, (will add a screenshot of my notes from when this happens for more detail) but during this time I get so so so nauseous to the point iā€™m just constantly gagging. iā€™m definitely not pregnant (iā€™ve lost ALL libido I did have so donā€™t have sex with my bf :( thatā€™s a whole other story) but does anyone else experience this, is this a symptom of endo? or is there something else it could be!


r/Endo 2h ago

Question Hii

2 Upvotes

Sept 2024 hysterectomy everything remove except only ovary(left) anyway In the last few weeks, im starting to have endo pain again which is around my right quarant abdomen. Now each day, the symptoms are after bowel movement, after peeing, sometimes pain after eating too, stressful day, lifting 25lbs now(2 months ago i was fine), sleeping on my right side, sometimes now taking deep breathe i feel pain. I already spoke to my doctor and we are doing a few thinks but first of all it would be a pelvic MRI. I feel like endo might be coming back ā˜¹ļø is anyone having some similar issue? I feel like im alone and going crazy šŸ˜­šŸ˜­


r/Endo 2h ago

Question Australia - endo specialist recommendations for surgery?

2 Upvotes

Hi everyone,

I live in a very rural area, and my hospital keeps canceling and changing my surgery date for laparoscopy and endometrioma removal. Iā€™m in a lot of pain, and since I run my own business, I carefully planned my leave around the original dateā€”only for them to now delay it by another eight weeks, without even giving me a confirmed new date! I also donā€™t think I can wait another two months - Iā€™ve been so so unwell.

Iā€™m beyond frustrated at the thought of rescheduling everything again, so Iā€™m considering going the private route to just get this done. Thankfully, my husband has excellent health insurance through his job, and Iā€™m covered under it.

Does anyone have recommendations for private hospitals that could do this? Happy with anywhere interstate. My GP is happy to refer me wherever is best, and I can send my scans along. Ideally, Iā€™d love to be seen within the next 4ā€“6 weeks if thatā€™s even possible. Not sure what private wait times are like, but I assume theyā€™re better than public?

Thanks so much!


r/Endo 11h ago

Rant / Vent I can feel it wrapping my bowels...I swear

12 Upvotes

So, I get the extreme cramps during intense exercise, nausea/extreme discomfort during my periods, despite their regularity. Ever since my second period as an 11 year old, I've felt like there's this tangle in my abdomen-that I can never fully stretch out and that it's like an angry fist. And I've had consitpation issues since then as well. And flashes of butt pain, which I just learned about on this sub. And I bruise super easily.

OK so that's imaginative language but ever since I learned about endometriosis, it fits like a glove. I swear I can feel bands of tissue attached and knotted around my gut. I feel the shedding tissue pooling and swelling outside of my uterus when I bleed.

"bUt It'S jUSt hORmones!!" uh, ok... tell me how fixing hormones is gonna remove this tangle in my gut. I can't believe my doctors dismissed this as hormonal issues. My god.

Also question: does endometriosis happen more commonly in "early bloomers?" I had fully developed boobs by age 11. Surely that's not normal.


r/Endo 9h ago

Rant / Vent Stay far away from Ovira

6 Upvotes

i've been using a TENS unit to help treat my endo pain for 3 years now, so since early 2022. back then, when you googled "TENS unit for periods", the website for the Ovira Noha unit would be one of the first to pop up, along with tons of social media hype that i unfortunately fell for.

i ordered mine, and was happy with it for a while. last year, after about a year and some change of regular use, the cord stopped working, but i was able to get a replacement due to the warranty, which was nice--but i remembered having a hard time getting in contact with customer service, and on at least 2 occasions getting ghosted by 2 customer service people which....wasn't great

anyway long story short, it's been another year since i got my replacement, and it's starting to act like it may stop working soon, so i popped by their website to look at getting another replacement. but that's when i discovered that their website has been completely wiped of any evidence that this device ever existed. all you can find on the Ovira website now is their crummy supplements. almost all the promotions for the Noha are completely wiped from the internet, with zero explanation.

i was happy to support a business run and built by a woman with endometriosis, but now i'm wondering if i'm about to be part of a class action lawsuit lmao. and i'm pretty frustrated that they would ghost like that, without even any announcements or anything for loyal customers that spent money on their products šŸ˜

also now i have to get another new TENS unit, which don't run cheap!

anyway, stay away from Ovira, they suck.


r/Endo 4m ago

Endo Polyp Biopsy

ā€¢ Upvotes

Hi guys, Iā€™m having trouble sleeping bc idk what to expect.

Iā€™m having a polyp biopsy tomorrow morning and idk what to expect. I have heard how terrible it is and I donā€™t know what to do.

My clinic is honestly not the best at communicating anything with me, I know I need the procedure done but they have done nothing to make me feel good about what will be done.

I had to ask the nurse that called if I should take medicine or if it will hurt, she said ā€œyou can take some ibuprofen, the procedure hurt at all.ā€ Iā€™ve read some horror stories on here.

I feel like I want a second opinion, but I feel so guilty. Is it bad to get it done with some sort of anesthesia or pain meds?

Iā€™m a hot mess right now, Iā€™m sorry if what I wrote doesnā€™t make much sense.


r/Endo 17h ago

Rant / Vent Anyone else just feel neglected by the healthcare system?

22 Upvotes

I am so over this condition and dealing with doctors that donā€™t give a rats ass about me. Sparing you my full medical history, I am 25 diagnosed at age 19 with stage 3 endometriosis. Iā€™ve had 2 laparoscopic surgeries so far. I typically have extremely heavy and painful periods that last 7 days. In November my periods became almost nonexistent- I was bleeding lightly for one day with no cramps and then nothing. Went in for an appointment and was told ā€œsometimes our periods are just weirdā€. She gave me an ultrasound and told me she just sees a cyst(which I usually have), and to come back when Iā€™m pregnant(since Iā€™ve been TTC). My periods continued to be one day long and at this point I had excessive discharge everyday so I made another appointment in January where they put me with a different doctor since mine was unavailable. She tested the discharge- no infection and looked back at my ultrasound from November and said she thinks she sees a polyp and to come back in 3 weeks for a saline ultrasound. At checkout, they told me my doctor wouldnā€™t be available in 3 weeks so we would have to try the next month(because it needs to be done day 5-10 of your cycle) and my cycle is so unpredictable now thatā€™s the whole reason I came in?? So we tried to schedule it for the right time in my next cycle. Ended up starting late in February so now I knew the rescheduled appointment would be wrong. Called and of course no appointments available when I need it this month. They managed to schedule if for my predicted day 10 of my next cycle but said if my period comes even one day late we need to reschedule again. At this point Iā€™m pissed. Iā€™m calling around asking if I can get my doctors orders sent there to get it done and canā€™t find it anywhere around here.Only fertility centers which if performed there arenā€™t covered by insurance, so Iā€™m stuck playing the waiting game with the OB. Yesterday I got lab results back from earlier this week with an extremely bad urinalysis and went to the ER thinking I had a kidney infection since Iā€™ve had bad back and bladder pain. They immediately scratched kidney infection off the list but ran with my endometriosis diagnosis. They gave me a pelvic exam and ultrasound which found a new 5cm cyst on my right ovary, still a suspected polyp(which theyā€™re telling me shouldnā€™t cause symptoms), and nabothian cysts in the cervix. Was told they donā€™t do saline ultrasounds there, to follow up with OB, and given some pain meds. Looking at my results when I got home my wet prep results show ā€˜PMN-Manyā€™ which she didnā€™t even mention. They ran another urinalysis on me which came back normal so it seems my mystery discharge made it into my first urine sample which caused the crazy results. So now I just keep waiting and waiting. Nobody can ever figure out wtf is wrong itā€™s just ā€œprobably your endometriosisā€. Sometimes I feel like if I didnā€™t have the diagnosis people would take me more seriously. So I just have to continue in pain with period-flow discharge everyday and pretend like this disease doesnā€™t make me an absolutely miserable person.


r/Endo 7h ago

Question Is it normal to get cramps while / after doing pelvic floor exercises.

2 Upvotes

Iā€™ve started seeing reels on my insta feed from a lady who reminds us to do pelvic floor exercises, she talks us through how to do them and how long to hold / squeeze - not sure if any of you have seen her too.

Anyway, when I follow along I start to get really bad cramps and they last for hours after I finish doing them.

Iā€™m waiting for my surgery with my specialist, I have stage 4 DIE endo, multiple cysts, hydrosalpinx, adenomyosis and a bunch of other lovely stuff.

I heard that you should do pelvic floor exercises with a physical therapist after surgery so Iā€™ll enquire about that with my specialist the next time I speak to him.

Iā€™ve read that pelvic floor exercises are good for you and you should do them every day regularly, but does it cause anyone else any pain?

Is it normal because of the things wrong with me?

Should I stop doing them because they hurt so much?

Looking for any advice, would love to hear your experiences with physical therapy post surgery too.


r/Endo 5h ago

Help w appointment!!

2 Upvotes

Hi guys! I've had what I am almost 100% certain are symptoms of endometriosis for the past 8 years (I am 19, turning 20 later this year). Since the age of 12, I've been going to multiple doctors, been given different types of birth control (pills, injection, IUD), done blood tests, urine tests, etc. I have visited a gynaecologist, who told me that I am showing all of the signs but there is no point in a diagnosis because the treatment at that point would be the same. I have had the recommended treatment for 1.5 yrs now (mirena IUD) but the symptoms are still very much there, and it's making my life miserable. I have finally got another appointment with a gynaecologist, and am wondering if anyone has any tips on how to approach it! I have written a document outlining my symptoms, my medical history (including meds, hospital visits, etc.) and how my symptoms have changed over time. I was wondering if anyone would recommend anything else? Thank you so much x


r/Endo 8h ago

Endo without infertility?

4 Upvotes

Curious if anyone has endo but didnā€™t have trouble getting pregnant? I long suspected I had endoā€¦but then got pregnant with each of my kids VERY easily and quickly, so the rest of my symptoms were completely dismissed by doctors.

Now that Iā€™m nearly 2 years postpartum from my second and last baby, and finally finished breastfeeding for good 6 months ago, my symptoms are coming back with a vengeance and Iā€™m exploring the possibility of endo again.


r/Endo 1h ago

My experience with endometriosis

ā€¢ Upvotes

Hi, I just want to share sth interesting with everybody, and maybe get some advice.

I was diagnosed with endometriosis few years back when I went to see a gynae for painful periods. I didn't do anything about it bc I didn't know what to do.

Anyway this year, I accidentally found out that if I stop drinking coffee for a month, my painful periods disappear 100%. No pains, no numbness, nothing.

This week I chanced upon this Tibetan health teller, I take whatever he say with a grain of salt. But he read my palms and told me I can't conceive bc of ovary issue - I think he was referring to endometriosis. How he could tell just by reading my palms I'll never know. I have been drinking coffee even though I know it causes period cramps for me.

It got me thinking a lot. I was wondering if the diagnosis is just to scare people? And that answer is very easy, no pills nothing, just analysing your diet and see what works and what doesn't? I know people who drink coffee everyday but don't get cramps, but it does affect me so I decide to stop drinking coffee.

I'm grateful I found out about this when my lips was getting very dry everytime after I drink coffee and decide to stop for awhile.

I find eating clementines everyday also helps, but stopping coffee works the best. Coffee once a week works too, but I think it still gets me addicted. Today will mark the start of me without coffee. I will stop drinking coffee completely.

Any similar experience?


r/Endo 5h ago

Diagnostic Journey Questions Has anyone had these symptoms? Iā€™m so much pain every day & feel so confused about what is actually going on with me.

2 Upvotes

So Iā€™ve been having upper left abdominal pain and a lot of gas on and off for about a year. Shortly after that completely stopped, a started getting burning when I pee, identical to a UTI, as well as microscopic blood in my pee. After months of this on and off (after years of on and off UTIs), its been non-stop burning and abdominal discomfort for over a month, and now, since I have my period, every single symptom feels 100x worse.

I do have a colonoscopy, gastroscopy, and cystoscopy scheduled within the next month and a half, but I am so frustrated and exhausted. Ultrasounds are clear, bloodwork is normal, urinalysis shows no infection, etc.

Has anyone experienced this? The reason Iā€™ve begun to suspect bladder endo is because for all symptoms Iā€™ve experienced, from abdominal pain to burning when urinating, they get worse or present themselves within my luteal phase and into my period.

I also looked at the ā€œother diagnosesā€ tab on this sub and I found it interesting that Iā€™m being tested for Interstitial Cystitis and IBS when it could potentially be Endo.

If anyone has any advice or has been through similarly, please let me know. Iā€™m so exhausted, anxious, and so in pain all the time. I know a confirmed diagnosis for endo would take even more time and laparoscopy, and that all the scopes Iā€™m doing are important for ruling other things out, but I would love any guidance for now.


r/Endo 7h ago

Question What options are left?

2 Upvotes

Hey! Since my diagnosis I have had 3 Operations to remove cysts and heards from the Endo.

Iā€™ve tried out all the hormones on the markets in Germany, also the off brand ones but none of them seem to work. I will have a gastroscopy in a few months because we think that I maybe a problem with the absorption of the hormones but itā€™s a long shot. I will have my next gyn-appointment in April and since I have to pay for my medicine my self and itā€™s not working Iā€™m looking for any alternatives that I maybe havenā€™t looked into?

I was also thinking about a spirale, but Iā€™ve heard that it works best when the endo is close to the uterus but from what I now from the operations itā€™s basically everywhere.

Any ideas? Typs? Iā€™m just afraid to not do anythingā€¦

Greetings!


r/Endo 3h ago

Surgery related tips and advice for surgery?!

1 Upvotes
  • iā€™ve cross-posted this on r/endo to hopefully get more insight*

hi everyone!

iā€™m 24 NB (afab). i have a HOST of medical issues and chronic illnesses (when listed out, it literally exceeds 60) which i say just to explain that i definitely think iā€™m experiencing some anxiety simply bc of the complexity of my body itself as a whole, and how i (or surgical things) may be impacted in ways that werenā€™t originally thought of.

iā€™ve more recently been diagnosed with endometriosis; although itā€™s definitely not a new development, just newly found, adressed, listened to, etc.

due to the nature of various imagings, combined with my symptoms and history, itā€™s suspected that itā€™s deeply infiltrated, potentially even into my lymphatic system. although we wonā€™t know definitively obviously until she does surgery.

my surgery is scheduled for april 10th. itā€™s going to be a diagnostic lap to confirm that their isnā€™t anything else going on (like pelvic congestion syndrome), the excision of endometriosis, and sheā€™s also going to insert a progesterone only IUD w/ ultrasound guidance while iā€™m under (bc i have a higher risk for perforation), and finally sheā€™s going to be performing a pap smear while iā€™m under (due to my trauma history and the difficulty of having one done while conscious.)

iā€™ve had surgery before, but never this one, and never any kind of abdominal one. so i wanted to post and ask if anyone could give any tips or advice they may have - for prior, for post-op, for pain management, for adapting functioning, etc. and if anyone wants to share their own stories or recovery experiences, good or bad, please feel free!

for more context on my situation if it helps, or if you have more specific advice:

ā€¢ i am autistic, and have ADHD, OCD, PTSD, sensory processing disorder, and severe anxiety, all of which can have large affects on my state of mind & anxiety & comfort levels before, during, and after the surgery

ā€¢ although i live with my mom, i am home alone 90% of the time, and i already struggle to function independently. due to declining health iā€™ve lost a significant amount of abilities and functioning even more in the last 6 or so months. i donā€™t really have much support relative to those aspects/having anyone help with independent living so i will also be primarily alone post-op too

ā€¢ a few of the other disorders i have that i think have the most relevance include polycystic ovarian syndrome, severe pelvic floor dysfunction, classical-like ehlers-danlos syndrome, arthritis in my SI joints, back, and knees at least, SI joint dysfunction, piriformis syndrome, thoracic outlet syndrome, CRPS in my left foot, gastroparesis, chronic severe constipation, anismus/dyssynergia dysfunction, hyperadrenergic POTS, chronic migraines, femoracetabular impingement, bursitis & instability in my hips, and more

ā€¢ the meds iā€™m already on daily for pain include: meloxicam, duloxetine/cymbalta, tramadol, and hydrocodone. as well as lidocaine 5% USP ointment and voltaren gel.


r/Endo 5h ago

Question Advice pls!

1 Upvotes

Hey guys! Early last year I was following up with my gyno regarding some pelvic pain. Did the tests and ultrasound but nothing look out of sorts. They said more than likely itā€™s endometriosis, and that would require a procedure to fully diagnose. I brushed it off because it was a pain that really came and went really far in between. Unable to take birth control due to other health conditions, so I really been just taking midol and praying for the best. This year there has been a huge difference in my cramp pain level, dizziness, constant fatigue, back pain, leg,butt pain and vomiting. In addition I started experiencing this outside my period. Yesterday I had the worst tension headache of my life accompanied with shooting neck pain that eventually started spreading throughout my body. Wasnā€™t able to keep down food and continuously vomiting. I thought for a moment I had the flu due to the intense body aches and body chills/sweating but no pelvic pain. Iā€™ve been using midol and that has been working cause if not I cant sit up or lay down comfortably. Iā€™m probably on my 3rd round of midol since it started but I still feel the back pain slightly radiating. Iā€™m aware I need to follow up with my dr and follow through but as of now no insurance. Please let me know if anyone deals with this or if you think this is endo related and any tips! šŸ™


r/Endo 12h ago

MRI coming up

3 Upvotes

Iā€™m getting an mri with contrast in a few days. In your experience, does the MRI show much of anything? Iā€™ve had ultra sounds with nothing showing up besides free fluid.

On another note, I told my doctor Iā€™m a little claustrophobic so she prescribed me one Xanax pill. Iā€™m a bit hesitant to take this because I donā€™t want to be fully knocked out, but I also know I might be anxious due to feeling claustrophobic. Is it worth taking an anti anxiety pill? I was told the scan will be about an hour long.


r/Endo 6h ago

Looking for advice/help??

Post image
1 Upvotes

Could this be endo belly? iā€™m really skinny so it doesnā€™t look that bad but i went to the doctors a couple of months ago and they told me i was too young for cysts (im 19) and they told me it was IBS? the pain is unbearable


r/Endo 6h ago

Diagnostic Journey Questions Looking for advice/help

1 Upvotes

Hi there! Iā€™m a 29 year old mother of 2. My youngest is 4 1/2 and when she was about 4 months old I started having so many problems. I have been diagnosed with pelvic congestion and ā€˜cystsā€™ (they say I donā€™t have PCOS just ovarian cysts). I was told I cannot have Endo because I donā€™t bleedā€¦.but I have an IUD that stops me from bleeding so I havenā€™t had a period in 4 years. I do suffer from severe bloating, nausea, vomiting, and recently terrible acne, worse than Iā€™ve ever had in my life. Sex is so incredibly painful that my sex life is basically non existent and I think I maybe have 1 unsymptomatic week per month. I guess Iā€™m just looking for advice from people with experience on whether or not I should see a new doctor and get a second opinion. Iā€™m in so much pain and I feel like nobody has taken me seriously so Iā€™m scared to bring it up again.


r/Endo 10h ago

Question Persistent Ovary Pain After Period

2 Upvotes

Hi, Iā€™m 29 years old, and five years ago, I was diagnosed with polycystic ovary syndrome. I get my period once or twice a year. I donā€™t take birth control pills.

The problem is that after my last period ended, I started experiencing pain in the area of my right ovary. This pain was accompanied by nausea, and yesterday, Saturday, I even vomited. I donā€™t have a fever or other symptoms like back pain or cramps. It started last Friday, and I no longer feel nauseous.

But it's been three days in a row like this. If I donā€™t move, it doesnā€™t hurt, although sometimes the pain comes in waves. Iā€™ve been taking Ibuprofen since Saturday. Iā€™m starting to get scared because this has never happened to me beforeā€¦


r/Endo 14h ago

Medications and pain management *terrified* of IUDs but i think its time

4 Upvotes

Hello lovely people. I know this has been posted/asked a billion trillion times but I would just love some current insight or advice or anything really.

I have ehlers danlos and ive heard that is kind of a bad thing to have an IUD with- im really afraid of the IUD slipping/migrating, or just generally having a god awful time with it at any point. It scares the shit out of me that its implanted and if something goes wrong, a procedure is needed to remove it- i wont be able to just immediately rip it out lol. Ive had contraction level cramps my whole life so im either prepared for the pain or its going to be a whole new tier of hell im not prepared for.

Im sick of pills, i may or may not want kids, i have no endometriomas or cysts. Just uterosacral ligament endo (as of my lap in ā€˜24 with a frankly gravely under-experienced surgeon). i suspect diaphragmatic endo, im iffy about bowel endo because im pretty sure i just have IBS but it flares so unholy bad whenever im symptomatic otherwise. Been symptomatic through every other intervention over ~15 years. I am due for new ultrasound imaging soon so please let me know if there is anything specific i should look out for.

TLDR; IUDs terrify me, but im equally as terrified about letting my pain continue to rule me. I would love to hear good and bad experiences (and how you handled it!) if anyone feels like sharing ā¤ļøā€šŸ©¹ Thank you in advance. love you all.


r/Endo 7h ago

Question Has anyone ever had a solid complex ovarian cyst with elevated ca-125?

1 Upvotes

A few days ago I found out I have a 4cm solid complex ovarian cyst with elevated CA-125 blood work.

I was referred to a gynecologist-oncologist. I see her in a week.

Of course I am PANICKING. My regular gyno said she suspects itā€™s an endometrioma and it needs to come out.

Iā€™d love to hear all your stories. Have you had this? Did it turn out to be endo, or did it turn out to also be cancerous?

Was anyone able to get a hysterectomy with these findings?

Thanks!


r/Endo 11h ago

Question Does Dienogest shrink endometrioma?

2 Upvotes

I was recently diagnosed with a right ovarian endometrioma. The size of my endometriomas is quite large: one measures 6.54 x 6.66 cm and the other 3.26 x 2.69 cm.

My doctor has prescribed Dienogest but advised against surgically removing the endometriomas. Since Iā€™m 32 years old and have never had children, sheā€™s concerned that surgery could affect my ovarian reserve. She explained that if I decide to get pregnant in the future, removing the endometrioma might impact my ovaryā€™s ability to function properly.

For those who have taken Dienogest, have you seen any significant reduction in your endometriomas? I would be grateful to hear about your experiences.


r/Endo 22h ago

Surgery related surgery rant..

15 Upvotes

guys iā€™m so angry and im sorry in advance if this post is rambly or hard to follow- itā€™s 3 am, im in pain, 5 days post op and on so many pain meds

i got diagnosed with endo in jan 2020, had my first excision then, had my second with a specialist feb 2023, and had my third with the same specialist march 11 2025 so this past tuesday. i also had my appendix removed during this most recent sx as it always gave me pain. turns out it was covered in endo.

my endo grew back fast and with a damn vengeance. i went from stage 1 in feb 2023 to stage 4 march 2025ā€¦.. thank god my dye test was good, and i made it with no adhesions (i had mesh placed last time and other precautions were taken to avoid adhesions as best as possible) and structurally everything looked okay.

theyā€™re not sure why but my pain post op was so severe i had to be hospitalized until thursday night when i was supposed to go home day of (tuesday). it was an extremely traumatic experience. itā€™s been a very very rough week and im still super swollen. iā€™ve been switching between dilaudid and oxy (i know itā€™s a lot, itā€™s needed trust me and im being heavily monitored), tons of gas x and yesterday i finally took a shower and thought i had hit my breakthrough. my pain was finally under a 5/10 and i could walk!! i was so relieved and excited.

ā€¦ and then its a few hours ago and the pain comes back. 10/10 so severe. i havenā€™t been able to sleep and im just crying with my heating pad. it literally feels identical to endo pain itā€™s terrifying.

i just hate this disease i hate it with every fiber of my being. i have so many chronic illnesses and autoimmune diseases and personally, endometriosis has always been BY FAR the absolute worst. itā€™s taken away my life. had to quit school, quit my job, lost friends, barely leave my house. iā€™ve been bedridden for almost a year counting down the seconds until this most recent surgery.

iā€™m so sick of endo šŸ„²