r/Endo • • Mar 26 '25

šŸ“Œ Researcher AMA hosted at r/endometriosis today

41 Upvotes

On March 26th 2025 9 am PST r/endometriosis will be welcoming back reasearchers from The University of British Columbia to answer questions over a 24hour period. This was done once before a few years ago and was very popular.

Here is a link to the one held last time:

https://www.reddit.com/r/endometriosis/comments/ptvt21/hi_we_are_endometriosis_researchers_dr_paul_yong/


This time your questions about endometriosis will be answered by Drs. Fuchsia Howard, Natasha Orr, Caroline Lee, Tinya Lin and Catherine Lu as well as students Anna Leonova and Kerry Marshall. Erin, Rachel, Venecia, Gurjot and Sam who all have lived experience will also be on hand to answer your questions! https://yonglab.med.ubc.ca/reddit-ama-2025/


The AMA is now live here: https://www.reddit.com/r/endometriosis/comments/1jkeid0/ama_2025/


r/Endo • • Aug 06 '20

šŸ“Œ Welcome to r/Endo - Please Read

319 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 person’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 you’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 Map’: 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. Nancy’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 you’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, blood or menstrual products, 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€˜Moderators’ tab on the sidebar, or via this link.



r/Endo • • 14h ago

Rant/Vent (no feedback or advice requested) Social media and the fear-mongering of women's healthcare

31 Upvotes

Is anyone else deeply disturbed by the increase of posts fear-mongering women's healthcare? I see it more so on TikTok than on here, but lately my feed has been so many posts of women swearing off important healthcare like pelvic exams and paps, or judging the practice of pelvic floor PT. I know that it's misinformation, either rooted in ignorance or purposeful ragebait, but it is so sad to think that for younger generations especially those posts could be the first ones they find when seeking out information about what could be wrong with them, what endometriosis is, and what treatment options are out there.

Reddit was my primary source of community and information for endometriosis when getting diagnosed, and it's quite shocking to see what other social media platforms feed you when it comes to posts regarding endometriosis and women's healthcare in general. I obviously will not be taking healthcare advice from random social media accounts, but just wanted to ask if others have noticed it as well. I try to be somewhat positive about societal progress in regards to women's healthcare but it's difficult when seeing regressive takes like that.


r/Endo • • 2h ago

Rant / Vent 2. Meinungstermin in einer Klinik

3 Upvotes

Ich muss mir das einfach von der Seele schreiben, weil ich immer noch komplett fassungslos und wütend bin. Ich war gestern bei meinem 2. Meinungstermin in einer Klinik, kein Endozentrum, weil ich seit Jahren mit unfassbaren Schmerzen kämpfe.
Schon als ich reinkam, begrüßte der Arzt mich mit den Worten: ā€žIch kann Ihnen eins gleich sagen, Sie haben keine Endometriose, weil Sie erst 20 Jahre alt sind!" Als ich meinte, dass man das in jedem Alter bekommen kann, fing das Drama erst richtig an.
Ich durfte vielleicht 15 Sekunden meine Geschichte erzƤhlen, bis er mich unterbrochen und gefragt hat, wer mich vorher behandelt hat. Ich nannte ihm den Namen. Er kannte den Arzt überhaupt nicht, meinte aber direkt, dass das ein Chirurg sei und Chirurgen eh keine Ahnung von dem Fach hƤtten. Als ich erwƤhnte, dass dieser Arzt eine Endometriose-Zertifizierung hat, kam nur: ā€žDie kann sich jeder ausdrucken und hinstellen." Auch bei anderen Arzten hat er im weiteren GesprƤch die Kompetenz angezweifelt, was mich extrem schockiert hat. Ich versuchte, meine Symptome zu erklƤren, aber er ließ mich gar nicht zu Wort kommen. Irgendwann nahm er meine OP-Bilder und fragte, ob meine EileiterdurchgƤngigkeit getestet wurde. Ich sagte ja, eine Seite ist zu. Seine Reaktion war, dass so viele Frauen keine funktionierenden Eileiter mehr haben und das wirklich nichts Schlimmes sei. Dass ein Eileiter nicht grundlos dicht ist, und meine Hinweise auf keimfreie Flüssigkeit und eine mesotheliale Zyste, was beides Entzündungszeichen sind, hat er komplett abgetan. Er meinte, das sei ganz normal.
Dann hielt er die Bilder hoch und fragte in einem richtig abwertenden Ton: ā€žUnd wo soll hier jetzt Endometriose zu sehen sein? Ich sehe hier gar nichts." Ich habe die Bilder genommen und ihm schwarze Flecken, rote Punkte und feine BlƤschen gezeigt, was auf jeden Fall auffƤllig aussah, aber nunmal nicht, wie Stadium 4. Seine Antwort war, dass so der Bauchraum einer normalen Frau aussehe und es nicht mal so aussehe, als waren dort jemals Entzündungen gewesen. An dem Punkt habe ich einfach angefangen zu weinen, weil ich das echt nicht mehr aushalten konnte. Ich habe ihm gesagt, dass er meine einzige Chance ist Hilfe zu bekommen, dass ich vor Schmerzen tagelang nicht mehr laufen kann und mich festhalten muss, damit ich nicht zusammenklappe.
Seine Antwort darauf war nur: ā€žJa, es gibt halt nicht auf alles eine Antwort."
Als ich meinte, dass wir heutzutage zum Glück so weit sind, dass wir wissen, welche Krankheiten dahinterstecken, meinte er plötzlich, dass ich vielleicht Adenomyose haben könnte. Das könne man ja auch schon mit 20 bekommen. Dafür müsste er ja aber meine Gebärmutter rausholen und aufschneiden.
Ich sagte direkt, dass ich das natürlich nicht machen werde, mit gerade mal 20 Jahren. Als ich erwiderte, dass es im Ultraschall schon Auffälligkeiten wie Asymmetrie und eine ungleichmäßige Struktur gab, nahm er wieder die OP-Bilder und meinte, da sei nichts zu sehen und das sei einfach ein total gesunder Uterus. Wobei man Adenomyose in der Laparoskopie von außen meistens gar nicht sieht, sondern eher im Ultraschall oder MRT.
Ich sagte ihm ein letztes Mal unter Tränen, dass ich seitdem ich 15 bin unfassbare Schmerzen habe, nur noch mit Hormonen vollgepumpt werde und ich so nicht für immer weiterleben kann.
Und dann sagte er zu mir: ā€žBevor Sie die Endometriose abklƤren lassen, sollten Sie wohl lieber mal Ihren Kopf untersuchen lassen." Da habe ich zu ihm gesagt, dass es mir nun reicht und ich mir so eine Aussage nicht gefallen lasse. Er meinte dann, dass er nichts mehr für mich tun kƶnne, und hat mich einfach nur angestarrt, bis ich von alleine aufstand und ging. Als ich schon in der Tür stand, sagte er noch, dass er meiner FrauenƤrztin nun ein paar nette Worte schreiben wird.


r/Endo • • 17h ago

Rant / Vent Everybody has it don’t exaggerate

28 Upvotes

Last week, I was talking with my mom on the phone. As we were hanging up, she thought I would hang up, but I was working, so I lingered for a few seconds. At that moment, I overheard her telling an aunt I haven’t seen in 15 years that she wished we could have had kids.
We do not want kids, that’s one thing. But to be honest, I’m even scared to want to have kids because I will most probably never be able to have one. So I’m OK with this, and I’m trying not to think about it the other way around now.
I expect everyone around me to respect our decision. I had a talk with my mom about this, and I told her that I wanted her to respect our private lives and decisions. I also asked her not to use our private life as a conversation topic or bonding material with distant relatives.
Anywho, she went crazy and became all manipulative, but at one point, she said that I was exaggerating my illness and that everyone has cysts and it’s normal. She made it sound like it was nothing and that I was exaggerating. Then she gave an example of a woman who, mind you, had to undergo two emergency surgeries and lost both her ovaries and her uterus. Like, even her example was a screaming crisis, and she was still saying it was normal. Everybody has cysts, and I’m exaggerating.
We have lots of issues with her, and our beef goes back to the date three days before she gave birth to me because she tried to off me, and I survived.
I’m not scared to say this but I hate her. She’s evil, and I hate her even more because she couldn’t change and still couldn’t become a good person, even this late in life. I needed her the most and she was never there. I was almost bed bound for months and she says I am exaggerating. I am so tired of her bs and trying to be the bigger person. I wish I had a mother who would at least pick up the phone when I was hospitalized. If you have one, you are truly lucky.


r/Endo • • 16m left

Surgery related I got the surgery and was diagnosed after 8 years!

• Upvotes

Hi friends.

Writing this as I woke up at 5am to go to the bathroom and am pretty sore and trying to get comfy in bed again haha.

Yesterday I had a diagnostic lap to diagnose and excise any endo (as well as getting by tubes removed in a bilateral salpingectomy). I was almost in tears while waiting to go back there and was so nervous the week before, convinced they wouldn’t find anything.

For some history, I got a lap done by a regular OBGYN 4 years ago who said she didn’t see anything. I’d visited so many gynos who just tried to change my birth control for the, no exaggeration, fifth time and told me to just take advil and use a heating pad.

I finally got in with my amazing specialist in my city, a urogynecologist who specializes in pelvic disorders including endo. I woke up from surgery and spoke to my doctor shortly after, saying that he found a number of spots of endo (I think around 5?) as well as a chocolate cyst/endometrioma on one of my ovaries. He was a little surprised it wasn’t worse, but also said that even a few lesions can cause pain. He even found endo in my cul de sac, which I think maybe explains the insane lower back pain I’ve been having.

I am so sore (nothing unmanageable) but so happy I went through with it and finally have answers.


r/Endo • • 40m ago

Question Has vizanne worked for you?

• Upvotes

Or similar meds meant to reduce endo ovaries activity


r/Endo • • 1h ago

Rant / Vent Post lap and in absolute pain

• Upvotes

Had my Lap on the 1st of the month and hoped that it'll get better. 3 days later I got my period. The horrors of that pain were immense. Consulted my surgeon and she said: first period after is always the worst because of the fresh wounds, so i still had hope for the next cycle. The hole month all my symptoms were as always. Pain building up to a point where my joints hurt, my legs are burning and i feel like someone is ripping my spine out. And today my period started (yes bleeding twice in one month, cycle is a little irregular), the peak of my pain hit again. Every position lying down hurts and walking is not an option.

Welp it did not get worse after Lap but it did NOT get better either!? Do i need to give it more time? What the hell is causing the pain when that shit was literally cut out of me? Why the fuck is this illness so understudied.

I am only 21 how many painkillers, hormones, appointments, surgeries and years of despair will it take?

Will try slinda now and got an appointment in a pain clinic in december. Can only hope that they can give me some kind of relief.


r/Endo • • 1h ago

Endometrial Biopsy….no where like as bad as I had been told !!!!!

• Upvotes

28/10/26
I had one of these done 1 week ago. I had been told by many people that the pain was unbearable.
I took paracetamol and ibuprofen 1 hour before the procedure.
I had gas and air from the very beginning and held hands with a nurse. I made sure that my gas and air breaths were very deep( in and out) I had no local anaesthetic into my cervix. I was very ā€˜spaced out’.
There was a bit of discomfort throughout the procedure but it was very manageable, and sooooo much better than I believed it would be.
My advise is have gas and air from the very start of the procedure, don’t wait for the pain to get too bad before you start inhaling it.


r/Endo • • 23h ago

Question Lactose intolerance went away after endo treatment?

Post image
55 Upvotes

Hi! So, I drink lactose free milk. I do remember in my teens being able to drink whole milk and being ok. After my teenage years, lactose made me VERY VERY sick. Once it sent me to the hospital.

Context: now I am taking dienogest and almost all endo symptoms have gone away.

Anyway, I moved to start a new job and I had multiple whole milk encounters. My new friend made me milk tea and I drank it not thinking anything of it but she said she made it with whole milk. I was expecting the worst but nothing happened... Then, my new boss bought me a whole milk flat white to be nice and I was too shy to decline it so I drank it and again, NOTHING. I then ordered a boba whole milk tea just to test and NOTHING! I feel completely fine. Normally those would have been PAINFUL. Can this happen? Is this a thing? Do any of you guys have experience with something similar?

Btw. I am probably gonna continue drinking lactose free milk because I am still scared of the pain.


r/Endo • • 9h ago

Surgery related Surgery Experience with Dr. Mandi Beman in Denver

3 Upvotes

Hi Ladies!
I likely have Ashermans and confirmed endometriosis. Going through IVF and no success yet.

I had a consultation with Dr. Mandi in Denver to treat my Ashermans and she suggested an excision surgery for my endometriosis as well.
My surgery has been scheduled.

Can you please share your experiences with how your surgeries went?


r/Endo • • 21h ago

Question endo brain and work

25 Upvotes

hi, I'm a 31 f with endometriosis. i currently work in an administrative role at work which requires analysis of data and critical thinking. I've been feeling very frustrated with myself because when I'm on my period it's like my brain can't process information and my critical thinking skills go out the window. ive been working on a project and can't help but feel like an absolute idiot because it's like my brain just won't work. it's becoming very upsetting and the confidence in myself and my work is slowly going down with each cycle. even when I'm not on my period the brain fog is bothersome

does anyone have any recommendations as far as supplements or medications I can discuss with my doctor? or just recommendations in general? im just so drained


r/Endo • • 9h ago

Rant / Vent Frustrated & thinking about getting a walking aid

2 Upvotes

I 20(F), have been struggling with my mobility for 2 years now. I have been to doctors repeatedly for this with all my tests returning 'normal' and being pretty young I am heavily dismissed. (My country's healthcare is not the best)

I was diagnosed with severe endometriosis a month ago which is the leading suspect for my mobility issues. However, I still have consultations since there isn't a 100% certainty that's the cause.

I am fall prone with weak legs and I hit my head fairly often on the way down. My family is super against getting a walking aid due to me being young and not wanting me to waste my years being "dependent" on it and stuck in a "specific" mindset. So I convince myself I am lazy, push harder and the pain afterwards is debilitating. I often need 18 hours to fully recover or I just fall over like a fish out a tank.

I have tried light exercising/stretching but it makes it worse, walking feels like my whole stomach is being ripped apart and after all or any action I get exhausted. I get some relief when I sit but it still feels so awful.

I changed my diet and was put on Depo-Provera which helped alot but man is the pain unbearable. Walking is still such a difficult task for me and ends in alot of crying/emotional numbness on most days. I just stumble/limp all over the place.

It's weird cause I just feel lazy and like I am not doing enough.


r/Endo • • 7h ago

Question Is it normal to still have aches and pains when peeing 12 days after lap?

1 Upvotes

Basically the title! Is it normal to have some sharp pains when peeing, 12 days after my surgery? I’m still experiencing pain in my pelvic area and I assume it’s from surgery ofc.. but I’m curious if it’s still normal?


r/Endo • • 1d ago

Rant / Vent I miss who I was before I got sick

77 Upvotes

I have no friends anymore because I can’t leave the house except to go to work (barely).

I have nothing I am able to do right now except lay down with a heating pad. I’m so weak and so tired. All I do is complain.

I don’t recognize myself anymore. I miss who I used to be. I’m scared I will feel like this forever. I’m so alone. I have no one to talk to.


r/Endo • • 13h ago

Nerve pain endometriosis

2 Upvotes

I have severe nerve pain because of my uterosacral ligament endometriosis(4x1x3mm). Can anyone share their experience with how to lower this kind of pain? Maybe birthcontrol? or laparoscopy?
xx


r/Endo • • 9h ago

Surgery related Laparoscopic endometrioma removal after breast cancer —recovery advice?

1 Upvotes

I’m having an endometrioma removed laparoscopically and wondering what to expect. I’m two years out from breast cancer treatment and have had a mastectomy, expanders, implant exchange and abdominal fat grafting. Has anyone had both, and how did recovery compare?

I live alone and plan to have someone stay the first night. Was that enough help? I still have my lift recliner that helps me stand up.

Any recovery tips or must-haves? Also, how long did you take off work? I work remotely at a desk. Thanks!


r/Endo • • 10h ago

Diagnostic Journey Questions I'm not sure if I have endometriosis???

1 Upvotes

Hi, I'm 22F. I haven't been diagnosed yet, I can't see a gyn for another few months but I do have an MRI scheduled after I failed the sliding sign during my last ultrasound.

During the ultrasound they did see one large cyst on the left ovary, but nothing else. I was always told that painful periods were normal since I first started, and the classic "it can't be that bad". So I guess I've been compartmentalizing the pain for a long time.

I get horrible cramps and pains during my period. Spotting outside of my period, my periods are abnormal as it is. My bladder feels like it's being stabbed when I pee sometimes, pain with bowel movements of even farting too. Right now I have horrible sciatica pain. Sometimes when I walk it feels like something is tugging on my uterus and ovaries and it hurts. Sometimes yawning, coughing, laughing, and sneezing feels like being stabbed with ice picks. I've started getting visual migraines when I've never had them before in my entire life. The fatigue kills me everyday, no matter how much sleep and rest I get.

I just don't know what to do. It makes me feel like I'm crazy. Ladies do you think I have endo? I know you're not all doctors but I'm convinced you'd know more than my PCP.


r/Endo • • 15h ago

Diagnostic Journey Questions 14 mm endometrioma

2 Upvotes

Hi everyone, I'm really anxious so please if someone has a similar experience I'd to hear it.

2 years ago, lost my ovary due a 7cm endometrioma. 4 months ago, my obgyno found a 14mm endometrioma on my only ovary. Sent me to take BC and scan in 6 months. But i have been in such an anxious state, what happens with a small endometrioma? doctors wait until it grows? do they grow fast? BC really helps? do they shrink? I'd like to know if someone has a similar experience.


r/Endo • • 12h ago

Surgery related Dr. Jƶrg Keckstein, Villach

1 Upvotes

Hi! Did anyone have experience with dr. Jƶrg Keckstein in Villach. I am interested in laparoscopy for endometriosis. How much is the surgery and what is your opinion on him?


r/Endo • • 20h ago

Surgery related 5 days post-op from removing a giant ovarian/fallopian tube cyst

4 Upvotes

hello everyone! i recently underwent major surgery to remove a giant ovarian/fallopian tube cyst, and when i say giant, i mean GIANT (16 Ɨ 25 Ɨ 35 cm). it took up almost my entire abdomen and was pushing against my other organs.

the surgery was done through a mini-laparotomy, where they drained the cyst and removed the sac.

if anyone is going through something similar, please feel free to reach out or leave any questions in the comments. i’d be more than happy to share my experience and answer whatever i can.

i really wish there had been more stories about giant cysts online before i went through this, because it was honestly a terrifying journey. if sharing mine can help even one person feel a little less scared or alone, then it’s worth it. ā¤ļø


r/Endo • • 18h ago

Rant / Vent I hate my bladder

3 Upvotes

Rant post because I’m so sick and tired of endo and not receiving proper care. Around the last week of September my bad bladder issues got even worse. 9 months ago my urogyno diagnosed me with interstitial cystitis, I did the diet (rip tomatoes) and I have to still pee ALL THE TIME. My bladder issues have been getting worse and worse and I reached out to my urogyno after nearly peeing myself in a store because they didn’t have a public restroom. I reached out saying that this is hurting my quality of life and I didn’t receive a response until 10 days later saying I might have a bladder infection. I had my pelvic MRI for endo, which lasted about 30 minutes, I asked to be let out towards the end, and ended up urinating myself because I wasn’t let out of the MRI machine. I went in for a UA, and again didn’t hear back about my inconclusive results until 8 days later, which is when I started getting incredibly bad symptoms. I was heading to the ER when she finally reached out, and the tech doing the second UA got me an appointment at my regular gyno office same day instead. It had positive nitrites and leukocytes, but no bacteria seen and an inconclusive culture even after a clean catch sample. I was put on antibiotics, then 4 days later put on new antibiotics by my urogyno. I am STILL having bladder spasms and incontinence post antibiotics and I’m at a loss. I see my urogyno next week but I don’t feel heard. Some days I’m peeing up to 24 times a day, I can’t lay down on my back without having bladder spasms, and I can’t be in a car for more than 40 minutes without nearly urinating on myself. I don’t see the surgeon until December, and I have to leave school after I finish this semester because I’m starting to fall behind. I was a bridesmaid at my close friends wedding this weekend, and I had to wear depends and STILL urinated myself on the drive home because we got stuck in traffic on the highway when my bladder started spasming. Once at pelvic floor therapy, my PT put her hand on my abdomen and could feel my bladder spasming under her hand. She sent the session notes to my urogyno, and couldn’t even get a hold of anyone at the office.


r/Endo • • 13h ago

Question Uterosacral ligament endometrios nerve pain

1 Upvotes

Hi girls! Recently i have been diagnosed with endometriosis on my left uterosacral ligament. Before that, had pain in my lower back, left leg,…24days ago I started taking birth control Sibilla (without placebo) and my nerve symptoms are worse that ever. I can barely walk, my legs feels hot, i have tingling in my feet. I do not know if this is normal because my body is not used to hormones, but i feel scared. Can someone give me an advice?


r/Endo • • 19h ago

Rant / Vent Being diagnosed has done absolutely nothing for me

3 Upvotes

Hello everyone

I feel so incredibly lost and hopeless right now after another upsetting doctor’s appointment so I wanted to just vent all my feelings out in here.

In March of this year I had a lap and was diagnosed with stage 4 endometriosis, you can see photos of just how severe it was on my page if you’re interested. It was everywhere , sticking my bowl and uterus together and my ovaries were curled up underneath my uterus and also stuck together. I was thrilled to finally be told I wasn’t crazy and there was something really wrong with me that I could see and prove , and I thought at the time this had solved so many things for me. I thought it all being removed would help me or make a difference.

As the months have gone by I’ve waited and waited to feel better , and my pain is the same if not worse. I’ve told my surgeon I feel this way , told several other doctors this , and simply been told this is ā€œnormalā€. I am a naturally slim person but I’m frequently having endo belly so bad that it looks as if there is a tennis ball under my skin or that I’m several months pregnant , again just being told this is ā€œnormalā€. I have severe pain in my lower left abdomen along with worrying bowel related symptoms that makes it hard for me to put weight on my left leg or even stand up because it hurts so much , and again dismissed by doctors.

Today I was prescribed 100 tablets of codeine , birth control and told to have a baby vaginally and it’ll help make it all better. I don’t want to be on opioids inevitably, I don’t want to be on birth control when I’m already mentally unwell and I’m so frightened of it making me feel more unstable. All I could do was sob , there is nothing any doctor can do to help me and I feel like I don’t have a life ahead of me. I am (only just) 22 years old , I’m exhausted and sad all the time from the pain I am in and all I want is to ice skate and do gymnastics and ballet and enjoy social events the way I used to. I just want to feel normal and not be in pain all the time and I want someone to help me and it feels like that will never happen. I just don’t know what to do. All I can do is cry and I’m so tired of crying all the time. The only time I feel slightly normal for a bit is when I’m drunk , but I don’t want to ever rely on alcohol to help me or fall down a slippery slope of addiction.

If you’ve read this far thank you , if anyone would like to talk more in depth with me even just to rant together about our endo (especially if we’re similar in age ! I’d love to have more young people to relate with) please message me and we can exchange whatever details you like e.g instagram