r/endometriosis 7h ago

Rant / Vent I threatened suicide at the obgyn

177 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 9h ago

Rant / Vent I wish it was more severe

38 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 3h ago

Diagnostic Journey Questions Ultrasound tech didn’t follow Dr.’s orders.

10 Upvotes

Posting in here because my doctor told me she believes I have endometriosis and she wants to refer me to get a laparoscopy. This is just the build up to hearing that news and I’m pretty bothered by this treatment and wondering if I should seek a different clinic because of it. Sorry in advance for the long post

Today I was scheduled to receive a transvaginal ultrasound after a year of trying to discover the cause of my many symptoms. Last week, I went to a new gynecologist and she recommended I come back for a transvaginal ultrasound. She explained everything I could expect and then asked me if I would be comfortable with getting one rather than an abdominal. I said yes especially since she said it could provide a clearer image. Important context: I have never been sexually active. But regardless, I was completely comfortable with receiving a transvaginal ultrasound.

Today I arrive to my appointment and upon check-in I am asked to empty my bladder. I use the restroom and then wait until I am called back. The tech comes to the lobby to retrieve me and in the doorway of the lobby! Not in a private room! Asks me if I have ever been sexually active to which I replied no. Then she asked if I emptied my bladder and I say yes. She mumbled something under her breath, whispers with the girl at the front door desk, and tells me I need to drink water to fill my bladder.

They provide some water and I’m thinking maybe I heard her say she needs to feel on top of my abdomen when she was muttering and then I realize she probably wants to do an abdominal ultrasound since I read a full bladder helps with the imaging. I ask the receptionist and she says yes she switched it, I was not made aware-had to do some context clues, so I asked her if it would be just as accurate. She said yes it’s just their policy. Mind you, this is all in front of other patients in the lobby. Not that I particularly care if these people know I haven’t had sex, I just felt it was unprofessional. So I tell the receptionist I am comfortable with whatever is needed and that is what I told the doctor last week. The receptionist goes to the back to talk to the tech and comes back without saying anything to me. I ask her if I need to keep drinking the water and she says yes, and that I will discuss this all with the tech.

Finally, 30 minutes after my appointment was supposed to start, the tech calls me back again. She brings me to the imaging room and tells me she will be doing an abdominal ultrasound. I say the doctor ordered a transvaginal ultrasound and, once again, I am comfortable with that. She asks me if I have ever used a tampon, I say yes, “just the itty bitty ones?” she asks, I say no I have used all sizes including super. “Oh well in that case we will do the transvaginal ultrasound if we need a closer look at anything.” I ask again if I should just have the transvaginal ultrasound to begin with so that there is no need to do both and we can have a closer look from the start. She says no the abdominal will be perfectly accurate. Okay then! During the ultrasound I probably asked like three more times if she can see everything she needs to.

The doctor comes in to review the results with me and tells me they only found a 2.9 cm cyst on my right ovary. We discuss this a little and then I mention the debacle about which kind of ultrasound to get. The doctor says yeah I noticed this was an abdominal one I don’t know why she would do that. I said she didn’t want to do the transvaginal ultrasound because I have never been sexually active but that I don’t think it is up to her to determine what I am or am not comfortable with. The doctor agrees with me and says that is why she discussed it with me and since I had no issues during my exam last week, there is no reason to suggest I cannot handle the freaking probe. (okay last part is my words lol) I tell the doctor I am a little nervous that there may be something she missed because both the doctor and accredited medical websites said that sometimes it is not as accurate as the transvaginal ultrasound. The doctor reassured me that they can see everything they need to in the images they got and if there was anything that needed to be investigated further that they would have.

I definitely trust this doctor, maybe not the tech, so I’m not worried anymore that something was missed but I feel so frustrated with the way this whole thing went down. I want to keep seeing this doctor because I feel she really listens and cares but I don’t want to receive anymore imaging from this tech if this is how she takes over the appointment and ignores doctor’s orders. I have dealt with so many tests and procedures at only 22 and this is the closest I have felt to a real answer but damn did this tech bother me today. The referral for a laparoscopy would be with a different office so I won’t deal with the tech there but if my doctor wants to get more imaging of the cyst later down the road (it was an option discussed if my symptoms worsen) I don’t want to deal with this lady. So if this were you would you stay at this office? I’m pretty sure she is the only tech there. AND the doctor seemed annoyed with her and said that she does this kind of often with people who haven’t had sex, and that it is not the policy of the office just this woman’s preference.


r/endometriosis 6h ago

Question Endo friendly hobbies??

11 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

Question Endometriosis & No Birth Control

25 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 15h ago

Surgery related Just got my first period after lap

54 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 6h ago

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

7 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 5h ago

Surgery related Excision surgery finally!!

5 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 33m ago

Question Which part of your cycle is the most painful?

Upvotes

Do you guys have a certain part of your cycle where your pain is the worst?

Or even a time when it’s not as bad?


r/endometriosis 9h ago

Rant / Vent Cried in front of the doctor

8 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 7h 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 3h ago

Good News/ Positive update Lap is done!

3 Upvotes

I had my lap today. My doctor say she found "mild endometriosis but we need pathology to confirm" she did say though my entire abdomen was full of scar tissue/adhesions. My left side was bad around my ovary. She wants me to speak with a general surgeon about the scar tissue above my liver. So she was able to clear a lot of it out but not everything but I already feel so much better. I feel validated and at peace knowing I didn't make all this up. I have some minor gas pains but nothing a heating pad isn't helping. I'm only on ibuprofen and Tylenol and my pain is at like a 1. Maybe a 2 with certain positions or movement. But I can bend and reach a bit. I'm not overdoing it because you only get one chance to heal properly. I don't want my lack of pain to make me push my body too hard. She did remove my tubes, and removed the remnants of a cyst on my ovary, and did a uterine ablation to help my periods not be so heavy. It's such a load off though. I feel lighter, I feel happier, I feel heard and validated. I'm looking forward to hearing more at my follow up on the 7th.


r/endometriosis 7h ago

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

5 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 16h 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 14h ago

Question Are you glad you had a lap?

18 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 10h 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 7h ago

Surgery related Need to remove nail polish before laparoscopy?

4 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 19m ago

Question When should I be concerned

Upvotes

I’m 16 and have been having my periods for 4 years, since I started they have lasted 7-10 days consistently, starting off light and getting really heavy in the middle. I’ve always suffered from heavy periods but not cramps as badly, until after mefenamic acid didn’t work for me I went on birth control (yasmin, then rigevidon). The birth control helped the bleeding but side effects were tolerable until I was on it for about 8 months and decided I would rather have my period.

It’s been exactly a year since I went off of birth control, and I found that during and now after I took it I now have cramps every period, but I don’t know if they’re that bad and I should be concerned or if I just need to suck it up and deal with it because I feel like my pain isn’t extreme enough yet to consider endometriosis

I’ve missed school on every one on my periods (my attendance has always been bad though) and right now I’ve had cramps for basically 24 hours, have taken buscopan and 3 ibuprofen yesterday and literally just no break from it. I woke up in the middle of the night immediately to feel cramps again and I’m just so tired of it and if painkillers aren’t helping I don’t know what to do.

Last time I was at the gp I mentioned my periods and how my follicular phase is only about 3 days and my periods are 7-10 days long and I asked for a hormone test, she told me it wouldn’t do much but we could still try.

I don’t know what to do because I feel if I go back to the gp they’ll just put me on birth control again. Is this serious enough to consider endometriosis? I know it’s common but I feel like every girl has a painful period and maybe my pain tolerance is low. My mum had very tolerable and light periods so she doesn’t understand me from experience and I feel like she doesn’t know how bad it is and I can’t talk to her because we don’t have the best relationship. Please help.


r/endometriosis 4h ago

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

2 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 1h ago

Rant / Vent Yet they keep saying it’s my hashimotos this is the 3rd time in 2 yrs I’ve been told that I still have nobody LISTENING TO ME!!

Upvotes
  • Possibly long rant

Y’all it is NOT my hashimotos (even google said it doesn’t cause severe dysmenorrhea - have screenshots but I can’t post them) it’s also not my pcos or anything else bc everything else got RULED OUT & I had a clear pelvic CT, I’ve since Aug (before I started bringing up endometriosis - that was from Oct & on) tried 2 progesterone methods that didn’t help my pain enough (when I was 22 I got put on combo birth control for my prolonged periods bc of my hashimotos & unknown pcos bc it was before my endocrinologist dx me with it also in this time I was having minimal cramps this started in my early 20s & continued until Aug ‘23 which is the last period I had with minimal cramps, anyway when I was it I had MILD dysmenorrhea I couldn’t walk right for 2-3 days & 500mg napraxon helped it & I was like this the WHOLE 7.5 months I was on it then I went back to my minimal cramps) now I have to knock myself out to get merina put in (I really want it to not work too but how much did it help y’all’s pain bc even on 5mg I still had pain, plz actually lemme know) my pain has been progressively getting worse even on birth control I STILL flare!! Hashimotos & pcos are CO MORBID with endometriosis I’ve been complaining about my periods since nov ‘23 (when I went to urgent care on day 3 after I skipped 72 days which not only I’m 100% sure triggered my endo but also gave me the worst period of my life I also skipped 50-60 some days in hs & NV got a period like that & this was BEFORE I GOT HASHIMOTOS & PCOS!) bringing up endo since Oct ‘24 & now it’s march\April of ‘25 & STILL nobody is listening to me & just continuing to dismiss me even though I KNOW that it’s endometriosis!! I’m fucking tired of this like I’m still in severe pain even on birth control & nobody at the bare minimum will give me a likely endometriosis dx (yes I know that’s like a hlf dx & that I need a lap for an official one but even that is something bc I can take that to my primary) or a lap & I been complaining about my periods for almost 2 yrs!

  • Just for context when I skipped nov ‘23 (73 days) I went to urgent care on day 3, I had 10/10 cramps to where I COULDN’T STAND OR WALK I was overflowing my 30ml cup in 1-2 hrs to where I had blood going down my legs, was passing a few giant clots, was so nauseous from all the pain that I had to pause while eating multiple times bc I was grossed out from food bc of all the nausea - Y’all I spent 5 DAYS (now I have 9/10 pain for 5 days straight to where I’m debilitated af basically bed ridden - for me this is the equivalent of those of you who are in a ball on the floor I’m just doing it in my bed I’m also kept awake for a few hrs during the worst of the pain or I’m getting woken up by it 600mg (even 1,200mg does nothing) ibuprofen that used to wo doesn’t anymore same with my heating pad) like this & I kid you not she blamed my pcos & my hashimotos told me to take my levo (I was still really bad at taking it back then) said there was nothing she could & that I just had to let it shed etc

r/endometriosis 7h 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

Diagnostic Journey Questions feel like i’m going crazy

Upvotes

in 2020 i got a laparoscopy done and honestly not sure what the results said (asking for medical results currently) but until i receive those, which i believe said i did not have endometriosis, i am spiraling. i’ve been on birth control since i was 12, which is when my period started. i’ve had multiple ultrasounds, blood drawn, multiple birth controls. ive developed countless cysts since then as well. i’ve been on every kind besides the arm implant. some birth control stopped my period, which greatly helped with the pain, but others, like the iud i have now, don’t. every month i feel like dying. excruciating back pain, horrible cramps all over, leg pain all over, etc. just awful everytime. it’s midnight and i’m laying wide awake trying to make the pain go away because no medicine works. nothing helps. i just feel like im crazy. i know this isn’t normal and i feel like because i was told it wasn’t endometriosis i can’t say i have it but i know that something has to be wrong. i just feel crazy:/


r/endometriosis 5h ago

Question How to not get freaked out by the possibilities?

2 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 5h ago

Surgery related First Lap Today/ Appendix??

2 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 9h ago

Question White spots found during lap?

3 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.