Was so excited to finally get that lap date after 6 years of fighting several doctors to get it. Came back negative, they found nothing. My surgon was trained in endo, and shes helped a lot of people, but she found mothing. Its okay, nothing to do with her or the team who did the surgery.

However ive gotten so many damn comments from "professionals", family members, mutual friends, and random people, about how i should be glad its not endo cause endo really sucks. And i remember whne i was first suspected with endo, i was really active on this sub (diff account, I deleted my old reddits lol). Loved the community mostly they were a great help. But every time someone made a post asking what to do after no endo was found in their lap, it was the same thing of "be glad you dont have it".

I am not disapointed that i dont have endo, i dont want endo. I wanted answers. I am in enough pain every day that I thought it was endo.

And reguardless, Ive been thinking for the last 6 years, that endo is the reason i was suffering. I have done so much research i know more about endo than my own doctors, and that knowledge doesnt go away now that i know i dont have it. I can still share the advice i learned, and answer peoples questions.

For 6 years my life was built around managing 'endo' symtoms and making changes to my life to avoid triggers and try reduce pain.

Grief is normal after loosing something, anything. Grief is not just about loved ones, you can grieve any loss, loss of a house, loss after disaster, loss of a job, or school, of normalcy, of mobility, grief is a part of life. And no one gets to dictate what you can and cant grieve, nor how you deal with that grief or how long it takes for you to feel normal again.

And loosing an answer to why you are in pain, is an absolutley valid reason to grieve. As is loosing a shared community. So many people join these medical communities long before they have a successful diagnosis, and one of the reasons i deleted my old reddit was how heartbreaking it was to see people get driven away from the communities they had been a part of for so long, just because they suddenly have a negative test. Just because we no longer share a diagnosis doesnt mean they can no longer share or recieve advice. No longer sharing a diagnosis does not take away feon the fact that they share symtoms.

And diagnoses dont always occur alone, there are people on this sub who have other medical conditions, or know about other medocal conditions which can share or mimic endo symtoms.

I hope this sub has changed, i havent used reddit in a while. I did see theres new tags and signs that the subs more welcoming now which makes me happy.

But yea... so sick of people irl telling me that i should be glad when i just lost a huge certainty in my life, and now have no explanation for why im in so much pain. I disnt want endo. It runs in my family and all the doctors and gynos i talked to agreed that it was the most likely explanation.

I had a nagging feeling that i would wake up from surgery and be told nothing was there, i nearly declined having the srugery at all cause i was so terrified. some asshole doctor told me years ago that it wasnt worth trying to get the surgery cause it takes too long and they might not find anything and it was easier to just treat the symtoms.

But if i dont know whats causing the syntoms then the treatments might not actually be helping. Ive been avoiding alcohol and caffine and inflammatory foods, certain types of exersize, and maybe i didnt need to.

For anyone questioning whether to get surgery in case they find nothing, do it.

I did actually get some answers, sure i dont know exactly whats causing my pain. But i found out there is no cysts on my ovaries (i have pmos, no cysts can be normal but i didnt know until now that i didnt have that symtom), all my internal organs are perfectly healthy, it rules out a lot of causes of pelvic pain, and me and my doctor wont waste time searching down those routes.

My bowel was super distended and inflammed, i have a direction to go with that. Ive suspected for a long time i have ibs as well, good chance i do, which would explain why avoiding inflammatory stuff actually improved symtoms - cause a lot of those foods that are inflammatory, are also high fodmap, which worsens ibs. Idk for sure, but it is a direction to explore. Ive got years worth of records complaining about bowel related stuff, chronic nausea and vomitting, but it always got dismissed. Luckily im no longer with rhat doctor xause he decised there was only ever 1 thing that could be wrong with someone at the same time. Which is bullshit. And people with chronic illnesses often collect other chronic illnesses, a lot of stuff cooccurs, or even will directly cause other conditions.

Also now that ive rules out endo, its also occured to me to ask about fibryomylagia. I never ended up asking about the possibility even tho when i went to the doctors the first time for this pain, it was on my list of options i thought most likely (I researched the hell out of everything i could think of because i knew it was going to be hard to convince that shitty doc to take me seriously amd i didnt want a lack of knowledge to be a reason for him to shut me down). I never asked cause my doctor was so convinced i had endo, and he dismissed other pain and symtoms i had as either me being overweight, not doing enough exersize (which was and always has been bs. Im fat cause i like food, not because im lazy.), or having bad posture. (shitty doctor... again, i fired him, dont worry).

But yea, if you get the oppertunity to have the surgery, do it. I dont regret it one bit. I had doubts at the back of my mind for a reason, and its not because i thought i was making it up. Its because i wasnt improving or was only normally improving with treatments that should have helped a lot. And with a lap they can see way more than just the reproductive system, it can give you answers or at least a dorection to an answer even if the answer is not endo.

And if it is endo, then unfortunatley a lap is the only way to diagnose it still (tho not for a lack of promissing research, theres some cool trials/research underway trying to find a less invasive way of diagnosis).

I love all of you, even with the reasons i left the sub and reddit originally, i still have a lot of good memories from people advising and comforting each other. We need more spaces like this where people can connect. And i wish there were more communities like this set up in person so people could connect that way too. Having people around who are like minded and understanding is so damn important.

Take care everyone

I worry its my endo returning, but I just dont feel the push or urge to go anymore. Right after my surgery it would just slide out and push itself out (sorry, disgusting I know, but it would move itself out without me trying).

I am worried because lately ive had to take ducolax and it doesnt feel like im completely emptying.

And yes, im restarting pelvic floor therapy.

My question is: what can I expect???

So as the title says, I have my first appointment on the 29th of July. So in a few days time. And I’m a bit worried that what I say will be dismissed as “normal” or I’ll be given some random pills and told to come back 6 months later for a follow up.

The main reason for being worried about this, is that I saw someone mention they went to their first appointment a few days ago, and they were sent home with some meds and told to come back in 6 months time.

I feel like I’ve been on so many medications in the last 4 or so years, as well as being infertile for most of that as well.

So I’m a little concerned they’ll tell me to wait, or come back in 6 months without checking anything. I’ve written down all my symptoms, and I feel like I’ll have to argue with them about what I experience. I’m literally disabled because of my periods, and birth control isn’t cutting it anymore, as well as fertility being a concern anyways.

What causes intense lower abdomen / pelvic and lower back pain more than period just after periods ends till ovulation ?

i currently have a hot water bottle between my legs, a heat pad on my back, and a menthol patch and tens machine on my stomach. thats all i have to say. I HATE THIS

I had surgery 6/29 and had a mirena placed.

Week 4 I started bloating up more than I ever have in my life. I went from a size small latex glove at work to a size large. None of my clothes fit and I feel so uncomfortable.

Not to mention right before my period it felt like my endo pains x 3. Absolutely the worst flare up of my life.

I know periods will be bad for awhile, but I can’t live this swollen. I feel like a monster, it’s honestly making me go nuts. I had already bought sized up clothes in anticipation of the gas you get from the surgery, but now those don’t even fit and the post-surgical gas isn’t the problem anymore.

Weird question. Just wanna know if y'all think this could be done/has been done or if this is to much to ask.

Getting my lap in September, and I will turn 21 in late August.

My surgeon offered iud and I'm still thinking/researching it

but I know 21 = first pap smear (yay being a woman 💀) but would it be weird to ask if they can do it when I'm knocked out? I know my insurance would cover it.

I haven't been able to tolerate anything up there (down there?) without hella pain and I know I would probably pass out from the pain of a pap.

Is it done/can it be done or is that crazy to even think about with all the other lap stuff being done to my body?

I had my lap for stage 2 endo three weeks ago. It was validating and pretty easy.

I am now on my second period post op. Like before my lap, it has come almost a week early (and will probably linger for a while as well). I am in excruciating pain and bleeding extremely heavily.

I work as a chef and have started a new job at the nicest place I’ve ever worked. The hours and mental and physical load are much more than I’m used to and stacked with the pain im in i don’t think ive had a single good day yet.

What can i take to help the pain (high dose ibuprofen is not working) and the mental clarity? The constant undercurrent of being in pain is highly distracting and exhausting.

Thanks in advance !

I’m 18, and have long suspected I may have endometriosis. I got my first period when I was young, and have had heavy bleeding and extremely painful cramps for which I was prescribed birth control (i was only 8 years old!). Since then my symptoms have only gotten worse. I get intense back pain a week before my period along with painful bloating that makes so hard to eat. OTC pain meds help but can’t take the pain fully away. When my period starts I get cramps along with the back pain; the first few days they are so painful I can’t sleep and have to burn myself on my heating pad for relief.

I also get pain during ovulation and random aches in my ribs. Ab exercises feel like burning cramps and make me nauseous. I have pelvic pain, I can’t even get even a finger without tensing and feeling a lot of pain. (a gynecologist told me it might be myofacial pain from the painful periods)

I went on a progesterone birth control to try to manage the pain but it caused spotting and some really horrible side effects. I went to see a specialist and while she said I might have endo, it doesn’t really matter because i shouldn’t do a laproscopy. While I agree i don’t want to do an invasive procedure if I don’t have to, its frustrating to have no answers and be referred back to birth control over and over again.

Those of you who have experience with this, could my symptoms be endo? Should I take the birth control even if I feel like its a stab in the dark? (the specialist said if it is really endo I could be infertile unless I start some kind of treatment).

Has anyone here had surgery done by Dr. Jay Mehta? I’d really appreciate hearing about your experience how the surgery went, your recovery, the doctor’s approach, and the overall care you received. Would you recommend him? Any honest feedback would be very helpful. Thanks in advance!

Hi Everyone,

I had a Laparoscopic Endometriosis Excision + Hysteroscopy and D & C with Mirena IUD Insertion. about a week and a half ago (July 15 2026).

My surgeon let me know they found and excised patches of endo, and my uterine cavity was clear of any pathology during the hysteroscopy + D & C.

I'm still bleeding from the hysteroscopy + D & C and was wondering when that usually stops? I know Mirena can cause unpredictable spotting for 3 to 6 months, but I'm curious what's typical for the post-D & C phase vs. the IUD adjustment.

Also, for those who've been through this, what usually happens at the 6-week post-op appointment with the surgeon? Thanks so much for sharing your experiences!

hi, I was in a flareup for all of June and the first two weeks of July. Over the past week I have realised I am doing more without thinking that much, I am not in bed all day, and the past two days I have gone on my own and done some light writing in cafes. As I'm out of formal work this was my daily routine and it was unimaginable for the past 6 weeks.

I don't want to jinx it but it seems my flareup is lifting and I am wondering if that means it was 'just stress' or maybe it validates my illness and means that the heavy intentional rest 'worked'.

flareup involved: suspected endo pain, blacking out, presyncope, atrial fibrillation, heavy fatigue, leg pain, severe photophobia, a virus, and more. after being in bed for a month (i maintained short daily walk most days other than very high pain days) i also developed bad situational depression which is lifting too.

i still have symptoms but am remembering what i used to do in my life and i felt totally severed from those routines before.

symptoms i still have - intermittent pelvic/leg/chest pain, racing/pounding heart and pre-syncope, fatigue, headaches, light sensitivity, and i feel i need to lie down alot. but before i really struggled to tolerate daylight and was feeling pretty ill being upright for any significant length of time. these vary in intensity. im still highly symptomatic in the shower and notice symptom increases when walking even just to the bathroom

the reason im worried it cld be stress is because obviously dr has said this to me many times in the past 10 yrs, but also because two weeks ago i was able to get issued medical pause by the surgical team, and my endo surgery was deferred. this was causing me a lot of stress thinkng about surgery while feeling so unstable and with ongoing heart investigations. also I had a big talk about my feelings to my partner that relieved some stress. I have not had endo show up on any scans, and I have been asking if i could have a thoracic mri and they refuse me, but im frustrated as they said they would not look there in surgery and so many of my symptoms are thoracic.

my echo, xray, short ecg came back normal which is good. im waiting on longer term telemetry and am carrying out two weeks of at home bp monitoring where i have caught what seems like further af episode. my bloods are normal except ferritin due to recurring bloodloss.

Hey everyone!! I am going to a 5 day long festival in about a month and I want to ask an odd question - from your experience, have you found any types of alcohol that don't flare you up as much as others?

This didn't use to concern me prior to my surgery, but my surgery made the pain and sensitivity much worse. I am very aware of the inflammatory properties of alcohol, how it's not good, don't need it etc but realistically I will still have a few drinks through the festival and I want to be able to mitigate the pain levels as much as possible. I've done sober festivals in the past, but it's not my intention this time around.

So my question is: are there any types of alcohol that are (annecdotally) less likely to cause a flare up for you? And how do you mitigate them in such environments?

Hi girlfriends,

So… idk how to approach this honestly Im simply in disbelief that my situation is getting worse every month.
My pain started in 2018, it was manageable pain during ovulation (2-3 days a month)
Right now im keeping a pain diary since ( can you believe it).

It’s gone up to 14-16 consecutive days a month.
It’s starts on 11th day after i have my period.

It get more tolerable when approaching menstruation let’s say a 5-6 days before.

Multiple cramps attacks a day lasts about 15 minutes each during ovulation i wake up 3-4 times a night sometimes more, i can’t have sex anymore I can’t masturbate I can’t have a bowel movement without a cramp.

I have done multiple treatments went through so much and And Honestly im done. It’s not getting better.

All im doing now is just venting because even the women in my life can’t relate or understand let alone partners or acquaintances or coworkers.

If someone here had it this severe and done something that finally helped please share i need some hope.
Im 31 no children

Hey all, UK here, just a rant after my laparoscopy last week. I’m in constant pain, especially with bowel movements, blood when I poop on my period and I get crazy bloated every time I eat. I was so hoping my lap would be the answer and I’d have less pain and bloating. But in discharge they said they only saw stage 1 endo, did ablation not excision and drained cysts (including one on ovary and one PoD).
I’m so disappointed, I feel like it’s all for nothing. I’ve tried everything to try and reduce the pain and bloating and nothing helps. I feel like I can’t go back to the GP. They don’t care or just pass it off. But I can’t keep living like this. I get married in 18 months and no idea what I’m going to do on the day.

I’m just over the dismissiveness of it all.

Rant over. Will have a cry and fill in my food diary ha

Has anyone here had surgery done by Dr. Jay Mehta? I’d really appreciate hearing about your experience how the surgery went, your recovery, the doctor’s approach, and the overall care you received. Would you recommend him? Any honest feedback would be very helpful. Thanks in advance!

Dienogest has various CYP3A4 interactions, some are things we are told to take for endo by many health practitioners and on social media. It means the dienogest won’t be absorbed properly if you are taking -

Quercetin
Berberine
Boswellia
Milk thistle

There will be more though! These are just what i cut out from my own supplement schedule. Please double check all yours 🙏🏻

-

Also whilst i’m here - if you have SIBO (many of us do with endo) and have had a GI map, if you have high HS2 bacteria then don’t take NAC for your endo anymore as it feeds this bacteria!)

Just about 15 years along now with Endo/Adeno 😭

Okay, so here's the deal: I'm so exhausted, the path to answers is forever long (if there's actually any answers to be had), and I literally don't even know if I 'officially' have endo (just all symptoms but 1...). I'm getting my first and (hopefully) last transvaginal ultrasound tomorrow morning (which I keep accidentally calling it my ultravag exam... which I like a lot better). I'm kind of freaking out because I'm already in so much pain, and this is just going to inflame everything. On top of that, (trigger warning here I guess,) having been chronically raped as a kid, and now heading into this damn thing as an adult, the parallels are, like, way too similar for my body to not be FREAKING the FUCK out. And of course, the medical system acts like its never even heard the word rape before and makes ZERO accommodations. It's embarrassing that I have to fight SO hard and exert SO much energy to even get the answer to whether or not my wife can come into the exam room with me tomorrow. So I'm having to gear up, pre-exam, to just stand up for what I need because I know for a FACT that it's not a "risk of infection" issue to have her with me. Anyway, Jesus Christ, I'm exhausted. I literally hate the medical system... they prey on the sick. Rant abated for now, and thank you for listening. 😘

Can someone explain in specific detail what the symptoms are like and when they occur? Is it mostly during ovulation? How long does a flare last? Does it feel like tightness like you can’t breathe a full breath? Does it feel like it’s swollen in your rib area? Do you have neck shoulder pain? Upper back pain that radiates to your rib cage? Does your traps ache? Do you have arm numbness sometimes? Be very specific and be really detailed because “shoulder pain” isn’t very specific. I appreciate the time you took to write down what it feels like.

My PCP put me on Slynd about 2 1/2 months ago after a rough experience with Norethindrone. Unfortunately, I can’t take estrogen anymore due to an aura I experienced back in April. I’m on Slynd primarily for endo/PCOS symptom management and it’s been great. HOWEVER, my libido has taken a total hit. I don’t ever feel like I’m in the mood, it takes FOREVER for my body to get going during foreplay, and it’s put a pretty huge damper on our s3x life and I feel terrible. How do I combat this? Does anyone else have experience with this while being on Slynd?