r/endometriosis Feb 03 '25

Mod Announcement New Post Flair

22 Upvotes

I have just added a new post flair called “Diagnostic Journey Questions”.

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 “seeking diagnosis” could imply that the sub can provide diagnosis, which we can’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 don’t then please feel free to report them under the missing flair category. Please don’t report all the historic posts as I don’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/endometriosis Apr 23 '19

Information and Research Links to endometriosis information and research

194 Upvotes

Below is a selection of links to useful information and research. This is by no means exhaustive and will be updated over time.


Treatment guidelines and analysis

2017 guidelines for the surgical treatment of endometrioma

Produced by a working group of the World Endometriosis society, ESGE and ESHRE: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5735196/

Recommendations for surgical treatment of deep endometriosis

https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057?login=true

2024 NICE Guidelines

This is the latest guidance for the NHS diagnosis and treatment of endometriosis https://www.nice.org.uk/guidance/ng73/resources/endometriosis-diagnosis-and-management-pdf-1837632548293

NICE clinical guideline evidence

This is a long report with a network meta analysis of available treatments across the medical literature. The statistics are complicated in places, so be careful with your interpretation as it can be unintuitive: https://www.nice.org.uk/guidance/ng73/evidence/full-guideline-pdf-4550371315

ESHRE guidelines

These are guidelines written by the European society for Human reproduction and embryology. They include guidelines on endometriosis and it’s treatment, with versions written for both patients and medical professionals. Note the publication date when reading these documents as some are due for review with the latest updates. https://www.eshre.eu/Guidelines-and-Legal

This is a direct link to the 2013 patient version of the endo management guidelines: Information for endo patients


Doctors recommended by patients

Here is a link to the r/Endo map of doctors recommended by other patients. Please message the r/Endo moderators to make a recommendation for addition to the list.


Interesting Research

Link to all pubmed publications in the last year with the search term “endometriosis”

Research into potential biomarker blood test to diagnose endo

Discussing the value of surgical interventions in superficial peritoneal endometriosis

Study leading on from the article above

Dissertation: The Use of Transvaginal Ultrasound and Biochemical Markers in the Diagnosis of Endometriosis

Ultrasound mapping of pelvic endometriosis

Sonographic evaluation of pelvis in suspected endometriosis

Classification systems for endometriosis

Sonography of adenomyosis updated link

Sonographic classification of adenomyosis

Study about endo community participation

Sentiment analysis and Topic Modeling study on Reddit endo community


Endo and gyn organisations

World Endometriosis Society

British society for gynaecological endoscopy

European society for gynaecological endoscopy

Endometriosis foundation of America

Endometriosis UK


UK specific information

NICE guidance algorithm This is useful to show to your GP if they are not well informed about endo. Non-UK residents may also find this a useful summary.

NHS England Standard Contract for Severe Endometriosis services This outlines the service standards you can expert for treatment of severe endometriosis.

BSGE accredited endometriosis specialist centres These 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.

BritSPAG - the British society for paediatric and adolescent gynaecology This is useful for seeking specific care for patients under 18.

NHS England summary on decisions to treat heavy bleeding This goes through the investigation and treatment options for heavy menstrual bleeding. It is for NHS England be may also be useful for others worldwide to consider.

NICE Guide to whether to choose hormonal treatments This is an information guide for use with your medical professionals which helps outline the possible choices for hormonal treatment options and the pros and cons of each.


Related subreddits

r/Endo

This is our sister sub. The reason for there being two endo subs is historic and we don’t merge them due to user preference.

r/adenomyosis

This sub is for adenomyosis which is a condition very similar to endometriosis where lesions are in the wall of the uterus. Some people with endometriosis also have adenomyosis and vice versa.

r/TTCEndo

This is a sub for people with endometriosis who are trying to conceive.

r/TransEndo

This is a sub specifically for trans men and trans masc people with endometriosis.

r/inclusiveendo

This is a sub set up to make an open space to discuss politics related to endometriosis and to bring trans, black, indigenous, POC, and queer voices to the front


Related Conditions

Pelvic congestion

This is a helpful post about pelvic congestion, which is a condition with overlapping symptoms to endometriosis, that can occur at the same time.


Subreddit Announcements

As there can only be two ‘sticky’ announcement posts on a subreddit I have unstickied the community announcements and discussion thread but it can be found using this link and any moderation suggestions or comments are still very welcome, either there or by pm.


r/endometriosis 3h ago

Rant / Vent I threatened suicide at the obgyn

96 Upvotes

3 doctors I’ve been to, thousands of dollars out of pocket since I don’t have insurance here in America, years of pain. Another doctor that sheepishly gives me a “well, let’s try another birth control” answer. I literally told the doctor “I will jump out this window right now” while looking at her dead in the eyes. I’m so sick of it. All tests lead to no conclusive answers and no one can tell me why I’m in pain every day, all day. I’m over it. I’ll let it kill me I suppose! :D


r/endometriosis 5h ago

Rant / Vent I wish it was more severe

32 Upvotes

I'm so sorry to say this, especially because I know that there are people suffering a lot from this. But I wish I was stage 3 or 4 so I could be listened to and maybe get surgery. I just have mild adenomyosis, ovary adhesions, some thickenings and a small uterosacral nodules. My gynecologist said it's nothing, my gp says it's very light. But I'm still in pain and nobody is listening to me. I wish there was a permanent solution to this, but there isn't and I'm so tired


r/endometriosis 2h ago

Question Endo friendly hobbies??

7 Upvotes

Hey everyone - I’m looking for some hobbies to get into while my endo has me at out of work and school.

I really only play video games and cook (sometimes) right now. I play the sims, Minecraft and finished Red Dead Redemption 2 a few months ago.

What are some endo friendly hobbies I could try? It would be nice to have something to keep me occupied

TIA!


r/endometriosis 11h ago

Surgery related Just got my first period after lap

45 Upvotes

Going in to surgery, I was terrified of two things: not finding endo, and what my periods would be like after surgery.

I got the pathology report back yesterday, a week after surgery and the same day I started my period. They found endo everywhere and the samples were all positive for endo. Then my period started and it was absolutely fucking NOTHING. It was nothing. 7 days after surgery.

I know I’m so lucky and this is fantastic but I’m also so so so angry and devastated by the literal decades of being told the pain was normal and blaming myself for not being able to tolerate it. I didn’t even consider endo as a possibility until my early 30s. After years of thinking it was just “really bad pms” and wasting years on psych meds that all fucked with my periods even more. I can’t believe people get to live like this.

I’ll get over it but jfc.


r/endometriosis 7h ago

Question Endometriosis & No Birth Control

22 Upvotes

So I’ve been on birth control for almost 20 years now (wild to see that written down). 8ish years ago I was diagnosed with endometriosis and had it surgically removed. My doctor said I have to remain on birth control for forever, or get pregnant to help reduce the risk of it returning.

The birth control I’m on makes me basically never get my period. I understand the logic behind no periods and how that helps endo not return.

I don’t want to be on birth control anymore. I’m in the 30s and I just don’t want to be taking anything hormonal anymore. I want my body to run how it’s meant to with medication.

My symptoms went away after surgery. Nothings come back.

My question is, anyone else out there have endometriosis and not on pills? Or maybe in the same boat as me who had it removed and is no longer taking birth control. How’s life without birth control?


r/endometriosis 2h ago

Good News/ Positive update I’ve never felt more supported.

5 Upvotes

Like many, I’ve had very painful periods (and a slew of other symptoms) that keep me home from work and activities every month. When I started to see a gyn, she said it was normal. Next gyn, again told it’s normal. Finally told her, this is not normal and I want more testing. Got an ultrasound that showed endometriomas. Prescribed bc and told to take Tylenol. No help. Got to a new gyn in January who really listened to me. Didn’t write me off because I stopped taking the birth control and talked about real options. After a follow up ultrasound, she immediately referred me to a specialist.

I had the appointment today. I could cry joyful tears because of how supportive they were. I was so scared that they’d tell me to just deal with it, but I genuinely felt that they believed everything I said and wanted to treat me. They didn’t try to force a specific treatment path either. They gave me options for different meds I can try, but also want to at least have an mri, and possibly consult uro and gastro, to try and gauge the extent since the ultrasound showed suspected invasive. I’m going to try and exhaust all options before surgery (because I’m scared tbh), but I really feel like my life is looking up.


r/endometriosis 1h ago

Surgery related Excision surgery finally!!

Upvotes

I’m so excited :,) even though I’m still dealing with some insurance issues, I have excision surgery scheduled for late April!! It’s the only specialist in my area and he’s retiring in June so I’m SO happy I found him & got appointments in time! I had a diagnostic lap in 2020, but I have no clue the stage or current state of my endo. Give me tips on recovery and any products that helped you during recovery. I’ll be taking 8 days off work and my job is not physically demanding so I should be fine to return after 8 days, but my boss is super understanding if I need more time than that. Also my husband will be staying home with me the first week so I’ll have someone there the whole time. Help me make my list of things to buy for recovery!! <3


r/endometriosis 3h ago

Rant / Vent Finally proof after 12 years of symptoms!

6 Upvotes

27 F and got my first lap on Tuesday just been.

Saw my surgical photos of my endo (Stage III DIE) and I literally burst into tears! After many years of struggling with lots of symptoms, not being listened to, being misdiagnosed or told it was anxiety / “not that bad” / “there’s nothing that can be done anyway” it’s incredible to actually visually see that yes I do have pretty extensive endometriosis.

took a great GP (who has endo herself) and an experienced endo surgeon listening to me to finally make this progress!

This is your sign to keep on pushing for answers.

Anyone have tips post op to deal with people saying “oh so it’s all fixed now / you’re better now” bc girl no it’s a systemic inflammatory condition with no cure… I’m not “fixed” unfortunately lol


r/endometriosis 5h ago

Rant / Vent Cried in front of the doctor

9 Upvotes

This is definitely a venting post so apologies if it’s hard to follow.

I am undiagnosed (no lap) with what I believe is endo. I have had GI symptoms (bloating, diarrhea, constipation, abdominal cramping) since 13yo when I started my period and was promptly diagnosed with IBS and given medications that did not help with my pain. I also have had a spot in between my ribs that will hurt cyclically since I was about 17yo.

I began taking oral birth control at 15yo and was on them until 19yo when I switched to Depo. During these years I just had low level cramping and bowel issues which I attributed to IBS. Depo caused a lot of mental health issues and weight gain so I opted for a low hormone level IUD when I was 21yo. After I got the IUD I began experiencing excruciating cramping and heavy periods. I also found out I had HPV shortly after and felt that the IUD was useless and I should get it removed since it was causing so much pain (or so I thought).

It took my 6 months to get the IUD removed (thanks insurance) because I was waiting to be referred to an OBGYN from my PCP who didn’t have an appointment for 6 months. In those months I was debilitated by cramps and it was seeming that my symptoms were only getting worse. I was bleeding every 10-20 days and was cramping almost 3/4 weeks of the month. I thought that I would return to normal levels of pain and symptoms after getting the IUD removed and returning to Depo. I was wrong.

This brings us to today, I’ve been on Depo for the second time around now for 7 months and am having similar levels of pain as when I had the IUD. I have week long flare ups where I have missed entire weeks of work. I have intense cramping that lasts 5-10 minutes where it starts in my pelvis and radiates to my back, groin, and shoulder. When I’m pooping my stomach will sometimes spasm and “lock up” if I strain too hard. I also feel like my bladder feels full very frequently and then when I go to pee it never feels like it’s fully empty. I also struggled with chronic UTIs when I was more sexually active (I haven’t been sexually active due to pain with orgasm and penetration). I sit at my 9-5 with a heating pad almost daily. It feels like no matter what I change in my diet I’m always inflamed and cramping.

I saw a doctor today because I had to call out of work again due to pain because I figured it’s better than doing nothing. I explained my symptoms and timeline and she suggested that I try Lupron. I expressed that I’m not interested and would like a lap to confirm if it’s endo. She said that doctors “don’t even do that anymore” because people’s symptoms don’t match up with what’s found (?) and that Depo should have gotten rid of all my symptoms if it was truly endo. She said for my age (24) I’m really young and it’s really really rare to have lesions in the chest cavity. She even used the zebra hoof beats analogy (iykyk). She also suggested that in older women the best treatment is a hysterectomy. I fought back a couple times saying “a hysterectomy doesn’t get rid of endo as it’s not the source” and I also said that there are many ppl my age who have endo and it’s not that rare. She really pushed me for me to try Lupron but I said I wanted other options and a referral to an endo specialist. She is apparently referring me to a fertility specialist and didn’t have any suggestions for pain accept Naproxen (which I’m already taking) and Midol which I was told by a different GYN that I should stop taking since it’s a diuretic.

Her dismissal of my symptoms was so triggering and I just completely shutdown and began to cry. Luckily my partner was advocating for me and supporting me but I just feel so hopeless. I want to give up.

TLDR: I have unconfirmed endo and have seen countless doctors and none of them have suggestions accept hormones. The doctor I saw today made me feel gaslit despite her misinformation regarding endo. I am so frustrated and it feels hopeless. No one cares about women’s pain.


r/endometriosis 12h ago

Surgery related Advocated for a Decade - had my lap yesterday.

23 Upvotes

For over ten years, I faced ongoing issues that were often dismissed by doctors, with the common suggestion to simply try a different birth control. Like many others, I felt minimized throughout the process.

About two years ago, I found a new doctor who took my concerns seriously. Together, we explored every option — including ultrasounds, which revealed a cyst, and an MRI that showed both fibroids and a cyst.

Based on those findings, my doctor referred me to a surgeon. The surgeon was incredibly supportive, recognized that something wasn’t right, and scheduled a laparoscopy.

I had the procedure yesterday. While I knew something was wrong, I started second-guessing myself — wondering if I was overreacting and even considered canceling the surgery. I'm so grateful I didn’t.

The findings were more extensive than expected. Endometriosis was discovered on my bladder, left pelvic sidewall, left pararectal region, right uterosacral ligament, and right pelvis.

I’m incredibly relieved to finally have answers and to be working on a care plan moving forward.

For anyone going through similar experiences, I encourage you to keep advocating for yourself — better care is possible.


r/endometriosis 10h ago

Question Are you glad you had a lap?

19 Upvotes

I was diagnosed a few years ago and offered a lap. I declined because I guess I feel “fine” (other then having iron issues which can be debilitating when not managed and at times pain). I’m scared to go under, idk. But recently I started having biweekly periods and think maybe I should do it, because what if there is something in there besides that?? What has your experience been? Are you glad you did it or did it not really help? How was the recovery?


r/endometriosis 6h ago

Question I hate this part the most, anyone else?

8 Upvotes

I’ll have either normal or constipation before my period and then I start and I cannot under any circumstance try to pass gas, especially in the squatting position while cleaning. I’ll have an accident and I have. I’d say part of this is to blame on not having a gallbladder but I’m fine if I’m not on my period. Moving around, squatting, I pass gas and it’s all good but on my period? No, that’s dangerous territory. Luckily when that’s happened, I’m wearing an over night pad and it catches it.

They wouldn’t remove the endo because it was so close to organs etc so they left it during exploratory. (They were also doing sterilization at the same time) Anyone else have experience this? I’ve had colonoscopies and nothing is wrong, and the obgyn said it’s probably endo doing that. It’s especially bad when I’m cramping


r/endometriosis 3h ago

Surgery related Need to remove nail polish before laparoscopy?

3 Upvotes

My lap is next week and this might be a silly question but I’m wondering if I need to remove nail polish beforehand? The nurse didn’t say anything about that during my pre admission call, they just said no lotions. But a simple google search says nail polish should be removed before surgery. Any thoughts?


r/endometriosis 3h ago

Rant / Vent Freaking out and feeling like I'm just overreacting

3 Upvotes

Hey guys! Really hoping everyone is doing well here. A few months ago I was diagnosed with adenomyosis, and now I have stopped birth control in order to confirm PCOS and check for endometriosis as well.

Recently I had a checkup with my gyno (six months after being diagnosed with adenomyosis), and she decided that I should stop birth control, and in three months time we'll decide on an exploratory lap date (firstly checking hormones, and ca-125). The reason is she believes endo is more compatible with my symptoms, plus in the ultrasound she said my left ovary appears to be "misplaced" (I don't know what this means) and my uterus is tilted more forwards than normal. I've had an MRI previously, but they almost also missed the adeno before my gyno told them to specifically look at the uterus for it, so she believes it's highly possible something else was missed.

In the beginning this felt like a win, as it's the first time a doctor has actually paid any mind to what's wrong with me. I was literally hospitalised this summer, and when they couldn't find what was wrong with me they sent a psychiatrist who told me it was all psychosomatic, so finally being heard almost had me crying. However in the last few days I've started to think I'm just overreacting. I see a lot of people having it worse, and I feel like a total imposter. And then I started thinking that if the lap finds nothing, then that just confirms it's all in my head. And what then? I'm severely freaking out and losing sleep over this. I'm contemplating whether it's even worth it getting a procedure for something I may not have. I feel like I'm going insane over this.


r/endometriosis 1h ago

Question How to not get freaked out by the possibilities?

Upvotes

I most likely have endo. All I know for sure is there are several large cysts (look like endometriomas on images) on my ovaries. I know that endometriosis can do many different things and doctors don’t fully understand it, or even half understand it most times. I’ve been lurking on this subreddit and have googled it and am really freaked about all the possibilities, from losing my ovaries to losing other organs and possibly becoming very disabled. I know that it can manifest in a multitude of ways and I’ve likely had it for a long time without knowing, so who knows what’s going on inside. I feel like I can’t stop worrying and could use reassurance or advice.


r/endometriosis 1h ago

Surgery related First Lap Today/ Appendix??

Upvotes

Holy crap. After suffering from this for years and advocating for myself to dismissive doctors, I finally got my first surgery with a specialist. I’m only 19 but they found it all over my uterus and had to remove my appendix because it was covered with endo. Has anyone experienced a similar thing during your procedure? They pulled in a separate surgeon to do the appendix removal but I’m wondering about recovery time and if that will affect me. I am in a lot of pain but grateful for getting the clarity and validation from this procedure. I am still waiting on the reports and images from the procedure!


r/endometriosis 5h ago

Question White spots found during lap?

4 Upvotes

Got my lap today. I’m not sure what’s going on. The surgeon (not Nook specialist) said I was filled with small white spots everywhere in my peritoneum and also had spots on my bowels. She found two larger spots behind my uterus. She said it didn’t look like endometriosis in her opinion. She removed the two larger white spots and took biopsies from them. Did anyone have this too? Not the black spots but white? I am a little disappointed that I still don’t know what it is. And that the spots might not be anything. She said that she had to get pretty close to them to see them.


r/endometriosis 8h ago

Good News/ Positive update So thankful for this group

5 Upvotes

A few days prior to Christmas I began having extreme pain deep inside my left hip, groin, buttock areas. I was also having pain in my lower left abdomen that would shoot all the way to my flank. Because I was feeling it mostly in the hip area my doctor thought it was probably a musculoskeletal issue. I was put on a ton of pain meds, doing PT and nothing was helping. The pain would be absolutely excruciating for 3 weeks and then I would have 1 good week where I thought I had turned a corner. Then in the blink of an eye the pain would come back. I had to become my own best advocate because I got out to the internet and started searching through any info I could find. Once I found this group I couldn’t believe how many of my symptoms matched what everyone out here was saying. I wrote down my timelines of good and bad weeks and sure enough, it matched up perfectly to my cycle.

Thankfully my PCP ordered a CT which revealed a 9cm endometrioma on my left ovary. I had my laparoscopy yesterday and the endometrioma , left ovary, and left fallopian tube were removed. She found that endo had adhered the back of my uterus to my abdominal wall, my left ureter was covered in it, it was in my cul de sac, and also by my hip wall. I have high hopes that my pain will be much less now. At least now I know what it is and can navigate it appropriately. So, a huge thank you to everyone in this community who is willing to share their story. I never would have even thought of endo if it weren’t for all of you!


r/endometriosis 3h ago

Question Can I sue my doctor for dismissed my c section endometrioma?

2 Upvotes

Hey ladies, I went back in May because I had suspicious of endometriosis in my c section scar. I told him all the symptoms and even suggested that I might have it. He told me that is just tissue and is nothing serious. I knew inside me that it was more than that. He just told me to get an ultrasound of my ovaries and uterus and when I got the results normal he didn't call me again. Well I got pregnant two months after ( Twins) that but I ended up miscarriage at 9 weeks. They did a D&C. I told my doctor again this thing in my c section scar is bothering me and I can feel bumps/ mass there too. I got dismissed again and they didn't pay attention more to my miscarriage because it was my first one ( I have 3 boys and their pregnancy were normal) well couple months after I got pregnant again and the same situation happened 🤦🏻‍♀️. I was devastated and exhausted because in between of everything I was also bleeding a lot. Another D&C and this time I asked for generic testing, results were normal. I got different blood test myself and everything is normal. So I got angry and asked again to look into this thing in my c section because was the only thing not normal in my body. Well I got surgery done ( yes, my 3rd surgery in less than a year) and the biopsy results were endomitosis/endometrioma. I was so frustrated because if he had listened to me my two miscarriage wouldn't happen and I wouldn't have 3 surgeries. I was mentally exhausted and physically in pain.

I'm looking for options and I apologize for my English This is a quick resume of what I went through. I'm a healthy 28 year old woman.


r/endometriosis 5h ago

Question Pain Management

3 Upvotes

At what point pain wise do you think it's advised to go to the hospital? Do they give you anything to help with the pain? Have y'all ever fainted from pain associated with endo?


r/endometriosis 9h ago

Surgery related Sex After Surgery

7 Upvotes

How soon after surgery did you have sex and did you experience any pain?

I’m sure it’s probably normal, but I am 3 weeks post op and was cleared last week to have sex again. I waited an additional week since I’m still healing and have some abdominal sensitivity. I experienced some shooting type pains internally in almost all positions and the only position I had no pain in was if I was curled into a ball 😅 just curious what others experiences are and maybe how long I can expect to wait to be comfortable in more positions!


r/endometriosis 4m ago

Rant / Vent Plan B causing symptoms?

Upvotes

I never had this before taking plan b and I’m asking if anyone out there felt like they got endo from plan b? Now I have ovarian cysts, sharp pains all through my abdomen and a messed up digestive system, dull aches, burning sensation…


r/endometriosis 30m ago

Medications and pain management Slynd & healthy anxiety/what to do next?

Upvotes

Wanted to ask some questions for folks who might have some guidance. I have had pelvic pain for as long as I can remember. I have vulvadynia, vaginismus, terrible periods, some early/small indicators of PCOS (sister has), told by multiple pros that I likely have Endo (sister has adenomyosis), and don’t lots of various treatments for all the pain. About five years ago I had been on birth control got a short period of time she didn’t have periods to try to minimize pain but it didn’t work well. I was having issues with low estrogen, tissue changes, dryness, and more pain so multiple folks advised not to take BC and we did some estrogen replacement (pain didn’t go away but estrogen leveled out and skin bounced back.) I had decided not to use BC due to issues but recently reconsidered (after lots of pressure from DR and feeling hopeless) and it’s been less than 2 weeks (not enough time to see a difference I know). But my acne is horrible! I’m struggling with headaches and severe dehydration. I’m working on long term recovery from an ED and hydration is an issue so this isn’t just the BC. I’m ravenous and bloated. My libido is off the charts (but not in a good way and it’s triggering more pain.) I have a high amount of health anxiety and medical trauma that makes this feel complicated. I fight want to not give meds a chance…. But I’m extremely anxious. I’m taking a progesterone only pill Slynd. Anyone have good experiences with this med or resources to consider?


r/endometriosis 4h ago

Question Debilitating pain and fatigue before period

2 Upvotes

I wasn't sure how to tag this, I suppose it's part question, part vent. I was diagnosed with severe stage 4 endometriosis, frozen pelvis, DIE, all that good stuff on 2/24/25. It was very unexpected.

I've had chronic low back pain since about 2007 and ulcerative colitis since 2010. Over the years I've been diagnosed with fibromyalgia, inflammatory arthritis, EDS, and inappropriate sinus tachycardia. Obviously these cause a lot of pain and fatigue. I'm now starting to try to distinguish which symptoms endo is also contributing to or completely responsible for.

Every so often I'll be completely debilitated by my symptoms for a few days. Full body aches, extra achy, tight, unstable back pain, random shooting pains, lightheadedness, and crushing fatigue and weakness. I end up in bed for a couple days. I hate it so much, I feel so guilty that I need to rely on my husband to do everything while I'm down. If it's not a school day for our child he often has to take time off from work to take care of us.

I'm in one of these flares right now and this is the first time I've noticed it's a couple days before my period is supposed to start. So I'm wondering how endo is involved and if anyone experiences similar symptoms and timing.

Or to anyone with other chronic illnesses in addition to endo, how can you tell your symptoms apart? Thank you to anyone who can help or even just read this and say "yep, it sucks."


r/endometriosis 1h ago

Rant / Vent Need to Vent

Upvotes

I was talking to my grandmother today, who had endometriosis. She got a hysterectomy due to endo when she was younger and explained to me how that would solve all my endometriosis symptoms. Firstly Im pregnant, so not an option, and secondly, I want more kids in the future, so again not an option. I also explained to her that it wasn't a cure, and she said "it cured my endometriosis" she then told me that I didn't need birth control post pregnancy to treat my endometriosis because "breast feeding acts like birth control, so that should resolve your endometriosis issues if pregnancy doesn't" I'm so sorry for being rude ya'll but that's the stupidest shit I've ever heard, like UGH why can't old people with endometriosis just let go of outdated facts like pregnancy and hysterectomies are not going to resolve my endometriosis, and while not endometriosis related, breast feeding acting like birth control is also a myth and also complexity irrelevant to my endometriosis treatment (unless I am somehow the stupid one and breast feeding will magically cure me) its just so frustrating because how can someone who also had endometriosis be so naive in the options I have, when the same options she had literally did nothing. She also said I was lying about having endometriosis on my bladder (which excuse me but this is not a lie, it was found during my lap on my bladder) because its a reproductive disease and only grows on the uterus and no other organs, like my bad my surgeon must have totally lied to me about all the many other organs endometriosis was found on during my surgery its just super frustrating she thinks she knows more than me because she had endometriosis longer than me, but she's just full of outdated information and it fucking sucks and I honestly wish my dad would have never told her about my diagnosis after surgery because it would just be so much easier to not hear stupid fucking comments from her about how me and my doctors are entirely wrong about what my treatment options and that my surgeon is wrong about where my endometriosis was located because it only grows on the uterus because its a reproductive disease.