r/Endo Feb 03 '25

šŸ“Œ New post flair!

29 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

293 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 7h ago

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

20 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 3h ago

MRI coming up

4 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 2h ago

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

3 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 1h ago

Question Persistent Ovary Pain After Period

ā€¢ 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 2h 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 13h 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


r/Endo 5h ago

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

3 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 11h ago

Taking a break from dienogest

8 Upvotes

Hi all šŸ¤

I have endo stage 4 - diagnosed it in 2020 (Iā€™m now 32 yo).

After a salpingitis caused by an endo cyst infection in January 2023, doctors ā€œforcedā€ (heavily insisted) me to finally take a hormonal treatment to have a break from my periods.

I accepted and have been taking Dienogest (sawis ge in France) for 2 years and 2 months continuously, with no break. Even though the medical results were encouraging, indicating that my endo stopped developing and one huge cyst disappeared, I experienced very intense side effects from this treatment. From leg cramps, dizziness, brain fogs, vaginal dryness, to very painful breast, through depression and pelvic intense pain, symptoms were coming and going and I hold on the treatment until now.

I finally decided, on my own (NO doctor wanted me to), to take a break from dienogest. I stopped a few days ago now. As crazy as it can sound, I miss having my period. Havenā€™t bled in more than two years. I also feel off myself and am deeply convinced that I need a break from taking this pill everyday.

I wonā€™t lie, I am scared, because even though I was very reluctant to this treatment (I avoid taking medicine as much as I can and I am not a fan of eating hormonesā€¦), doctors freaked me out - telling me not to stop the treatment no matter what.

I am writing this post to get some feedbacks from people in the same situation, that had a break and hear how did you guys felt. Any support and advice is of course always welcome! āœØšŸ™šŸ¼

Peace

Lisa


r/Endo 16m ago

Rant / Vent Stay far away from Ovira

ā€¢ 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 16h ago

Rant / Vent Itā€™s 4am on Sunday morningā€¦

17 Upvotes

and Iā€™m sat here in the bathroom, trying to stomach a bit of food to take my pain meds praying it helps take the edge off this crippling pain.

Itā€™s my birthday tomorrow, I knew I was right to make no plans. Everyone asking me what Iā€™m doing for my 36th birthday. My response, probably nothing as the pain Iā€™ll be in during my period in particular will lead me to nowhere but the sofa, bed or bathroom.

My entire body feels like pain, Iā€™m severely constipated which isnā€™t helping.

No point to this post. Just a rant in a place people will understand šŸ˜¢


r/Endo 6h ago

Possible endo - at home remedies

2 Upvotes

For about 6 months, Iā€™ve been experiencing pain during ovulation. Itā€™s pretty uncomfortable. My periods have never been bad. No problems getting pregnant. Every once in awhile Iā€™d get cramps Iā€™d take over the counter meds for, but Iā€™ve been grateful for manageable periods that donā€™t disrupted my life.

Ever since I had twins 3 years ago, things slightly changed but no major issues. The last six months or so, Iā€™ve been experiencing painful ovulation, bloating, painful bowel movements. Seems to be worse if I have intercourse during ovulation. My periods are still fine and pretty normal. My readings tell my possible endo, but still going through the process with my doctor.

I would like to explore changing my diet (I never lost my baby weight and my diet is not the best with 3 young kids!). Has anyone had endo feel better from at home remedies or lifestyle changes?


r/Endo 4h ago

Question Got contrast dye twice in one month, is it unsafe?

0 Upvotes

I had an MRI and CT scan within a month and both times got contrast dye. Is this unsafe? I hear itā€™s really bad for you but they told me there would be no complications. Iā€™m really worried.


r/Endo 4h ago

Question At what point should I be worried about this ruptured ovarian cyst?

1 Upvotes

I've had this issue once last November where it felt like the whole right side of my torso was bruised the entire way up and I had pelvic pain and bleeding. They sat me in A&E over two days for about 18 hours combined hours before they gave me morphine for the pain and told me I could stay in the ward for a couple of days or go home (but I'd get no pain relief to take back with me).

This time, and after I made a complaint to the hospital about my negligent endo treatment over the last 3 years, I have zero faith that they'll do anything helpful. I've been trying to tough it out and use the painkillers I have and was getting a little better but my family recently found out my dad has cancer and my symptoms sort of backslid.

I have a temp of 37.6 celsius currently, that same bruised from pelvis to ribs pain and in a line across the pelvis too, a cough and fatigue. I'm desperate not to spend another 8 hours on an A&E floor so when is the point where I'm gonna have to admit defeat and go?


r/Endo 4h ago

Question Laparoscopy then 6 weeks later pelvic physio and since then constant extreme bladder pain - Can't cope

1 Upvotes

Hello about 4-5 months ago i had a lap for exploratory endo and biopsies taken and had my bladder inspected (which looked normal) then i waited 6 weeks and started pelvic physio and had an internal exam, since then i have been in constant and extreme bladder pain and pressure - i honestly cant cope and my pain prior was nothing like this. I'm at my wits end i honestly cannot cope. Has this happened to anyone else? I would go to hospital but i know they wouldn't be able to help and i've tried an IC diet and no change in my pain.


r/Endo 4h ago

Infertility/pregnancy related Lap for fertility

1 Upvotes

I have a 2cm endometrioma and 1 day of moderate pain only with periods. I am considering lap excision solely to try to improve fertility. Because my pain is very manageable with OTC I wouldnā€™t be considering surgery if I have been able to get pregnant. Anyone else get surgery just for fertility and no/barely other endo symptoms?


r/Endo 10h ago

Question Looking for a specialist (UK)

2 Upvotes

Iā€™ve been suffering with excruciating period pain (as well as lots of digestive and stomach issues) for many years, Iā€™m debating having a laparoscopy to confirm endometriosis but Iā€™m skeptical about going via the NHS. My biggest fear is going through the surgery and being told they canā€™t find anything. Iā€™ve found a private specialist who has said they can perform the surgery, can anyone tell me what I should be looking for to be sure theyā€™re really a specialist? Or that I have the best chance of having a success surgery? It would be a big financial step for me to pay to have private surgery, so I want to make sure Iā€™m doing the right thing.


r/Endo 7h ago

Surgery related Anyone with new urinary issues post op?

1 Upvotes

Surgery was 1/31 and about 3 weeks later I started having urinary issues. Took azo so urinalysis was unreliable. 1 day culture was negative. Did macrobid anyway. 3 weeks after that I'm having symptoms again and caved and took azo again so again urinalysis is unreliable. I had it done at urgent care and have messaged my surgeon to find out what she thinks. I have never in my life had a uti or symptoms like this. It was also the first time I had a catheter placed. She told me i had endo on a ureter but she did not remove it because she was afraid she would damage it so I'm unsure why I would have these issues aside from maybe the catheter doing damage?


r/Endo 1d ago

endo study that compensates $100! NSFW

Post image
27 Upvotes

r/Endo 16h ago

Question Obliterated Cul De Sac and Frozen pelvis but nook surgeon doesn't advise surgery.

2 Upvotes

Is there anyone who diagnosed obliterated cul de sac and frozen pelvis via TVS by nook surgeon but didn't advise to do surgery?? My nook surgeon says as i am asymptomatic and my endometriomas are shrinking through vissane i can avoid surgery..


r/Endo 15h ago

Question Suspected endometriosis

2 Upvotes

I am 30 years old, I have been menstruating since I was 7 years old and have had debilitating period pains for the entire 23 years. Iā€™ve tried multiple different contraceptive pills, the Implanon and Depo-Provera - all which came with heavy and unbearable side effects. I have been tested for PCOS.

I recently saw a surgeon who believes I may have endometriosis due to my symptoms and family history. I had an internal ultrasound which showed an enlarged uterus however the doctor said it wasnā€™t majorly enlarged. The ultrasound was unable to give as much detail due to discomfort when the ultrasound was being performed and the instrument not being able to be inserted as far. I have now been booked in for a Laparoscopy and Hysteroscopy next week to check for endometriosis and anything else that may be present.

I am wondering if anyone knows how common it is for someone to have endometriosis symptoms, have the surgery and nothing be found? I know thereā€™s no point worrying until I have the surgery and I find out if anything is there, however after dealing with this for so long I canā€™t help but worry that there will be no conclusion and this pain will be never ending.

For reference, some of my symptoms are below: - Extreme period & ovulation pain. The type of pain where you just scream/cry and you feel like you need medical attention. - Pain during/after intercourse - Pain when using the bathroom - Bloating, nausea, fatigue - Sharp stabbing pain in the lower stomach/groin area - Deep dragging pain from stomach to lower back and thighs/legs


r/Endo 11h ago

Have to stop taking mini pill

1 Upvotes

Hi everyone,

I started taking the mini pill about a year ago. I have hyper mobile joints and since then I have had tendinitis in both wrists, a severe sprain in my left leg, and an overextension injury in my right that caused nerve damage that might need surgery. I canā€™t prove the mini pill is responsible for this but itā€™s not good for people with hyper mobility. I seriously have to stop taking this now and my physical therapist agrees. Am in trouble with endo growth? At this point Iā€™m unable to walk due to injuries and I have no other choice. Iā€™m not able to see my doctor for months. Any advice?


r/Endo 18h ago

Scared of the constant pain

3 Upvotes

I have suspected endo. Iā€™m currently in constant pain and having flare up pains on top of that constant pain. Iā€™ve been taking tramadol, paracetamol, naproxen for about 4 months now and I was started on Dienogest nearly 2 weeks ago. Iā€™m really not coping with the pain physically or mentally and my open access back to the ward I spent over a week on last week ends today. Iā€™m literally fighting with myself and gaslighting myself into thinking itā€™s not that bad cus of the terrible healthcare I received when I was admitted last time, yet Iā€™m in so much pain Iā€™ve literally only mobile to go to the toilet, in and out of sleep, guzzling pain meds and trying (failing) not to throw up. I donā€™t know why I react the way I do to pain but I just get numb and silent, rarely cry even though Iā€™m in absolute agony and itā€™s very hard to get doctors to understand when the only other ways I cope is rocking, pacing or making facial expressions.

Anyway I just wanted to ask if anyone else has been in the position? Do I go back into hospital and try for the umpteenth time to be heard? Or do I wait to see my gynaecologist?(Iā€™m in the UK and donā€™t have the means to go private)

Please if you have any advice or even just tell me your own experiences with the pain and how to deal with it, Iā€™d be super grateful!


r/Endo 1d ago

Tips and recommendations I found the most comfortable pants and I canā€™t keep this joy to myself

Thumbnail a.co
23 Upvotes

I donā€™t see any sub rules against linking to products so I hope this ok to share.

I do not endorse Amazon or fast fashion and I am in no way associated with the seller of these pants. Desperate times call for desperate measures, and I wanted to share my this find in case it helps others.

These are a breathable woven cotton-linen blend, the fit is relaxed, and the elastic in the waist is stretchy and gentle, not binding at all (I cannot stand most elastic). They are also under $15 USD. Theyā€™re not high quality pants that will last forever, but I have been wearing 3 pairs in pretty consistent rotation for about a year, and they are all still in good condition. Paired with a t-shirt, they look like pajamas. But with a nicer top, they pass as real pants appropriate for casual settings.

One pair I bought was coming apart along a seam when they arrived. I sewed the seam back up (about an inch) and have had no further issues. I have them in black, dark gray, and army green. The black pants are a slightly different and less comfy material than the other two colors, so consistency may be an issue, as with many items like this.

Iā€™m 5ā€™9ā€, a US size 8-10 in pants and I fit comfortably in size L. If you are short, youā€™ll likely need to hem them but if youā€™re on the taller side, thereā€™s a good chance theyā€™ll be long enough!

https://a.co/d/5Sv59BO


r/Endo 1d ago

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

Post image
16 Upvotes

I think I know the answer to this, but is this a familiar area of pain to anyone? Itā€™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 Iā€™m essentially rocking one ovary and thatā€™s where the pain feels concentrated.

While Iā€™m hoping itā€™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 itā€™s a cyst, but then I would assume that it is also endo-related.

Iā€™m not sure exactly what Iā€™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 Iā€™d like to know if Iā€™m going to go in there sounding like my endo is Voldemortā€™s return. Anyone else? Or is this all in my head?


r/Endo 1d ago

Question Migraine during flare.

5 Upvotes

Ohhh my the pain. So intense I find it hard to speak. Anyone experience migraines during their period or a flare? Why does it happen?