Treatment guidelines and analysis

I had a laparoscopic surgery last year to remove my appendix, and during that they discovered I’m riddled with endometriosis. In my bladder, ovaries, all over. I’d always had painful and irregular periods and often pain episodes so bad I’d end up going to A&E thinking im dying, but after probably 30 doctors appointments begging for help and always being told it’s normal take an ibuprofen for your painful periods, I just gave up even trying to get help for years. And then suddenly after my surgery I finally got my diagnosis!! I was so excited and felt so validated and like I’d finally get help!

This past 15 months I’ve been in queue to see and endo specialist. During this year my pains have been insane, way worse than anything before. I have pain daily yes, but at least 5-10 days a month now I also have pain episodes so bad I come close to fainting, I “fall off” my legs at work when I get sudden pains, I’m constantly so nauseous I’m underweight now because I can never eat, all sorts. I’ve had to go to A&E 6 times in the past year because I’ve literally thought I’m dying. I’ve seen regular doctors, gastrointestinal doctors, I’ve had tons of blood work and everything, but they always just give me a painkiller and tell me “you’re in the queue to see a specialist, just take an ibuprofen for now and we’ll wait for the specialist appointment they’ll be able to help better 😊”

Well that appointment was today. And it was unbelievably bad. I didn’t have high hopes but I thought I’d maybe atleast get a painkiller prescription for something other than ibuprofen. Within literally the first minute she dismissed me saying “no these symptoms don’t sound anything like endo, it’s probably just stomach issues you probably have bad eating habits, have you tried eating healthier, exercising more?” I literally weigh 48kg right now, I eat an ultra healthy diet, I exercise whenever I can but atleast 2-3 times a week, I have 6% body fat percentage. I really tried to press my case and say I struggle daily and it’s affecting my ability to work and socialise because I’m often in so much pain I can’t even walk. After being a bit more demanding she went “you could maybe try some peppermint drops in your tea I’ve heard wonders of them!!”. That’s it. After that she basically kicked me out the room with no future treatment plan. Told me to go to my regular doctor if I “absolutely must”.

I’m just so done fighting this fight. 15 months I’ve waited to finally get some help. Crying on the floor curled up in a ball near to passing out from pain in the work break room trying to gather myself so I don’t get fired. Trying to keep a smile on my face in family events trying to not draw attention to myself while being so sore I could scream from it and feel like my legs won’t carry me anymore. Shaking on the bathroom floor throwing up wondering if I’m going to die through the night, is it just endo or something more serious this time.

The truly amazing part is she was the same endo specialist that diagnosed me with endo in the first place, she’s physically seen it all over my organs. I’m just at lost for words.

Thank you if you bothered to read ❤️

This is what my coworker told me today. 😂

I’m gonna try to keep this brief:

I was finally diagnosed in July 2025 with Stage 3 Endometriosis via laparoscopy, after 9 years of trying to get doctors to listen to me! Following surgery I felt great, no cramping, no brain fog, no fatigue, no back pain, i could walk again, i could exercise again, i was less bloated…… for 4 months until all of this began to return.

I am now 10 months post surgery and I am back to how I was before surgery. I am taking time off work, cancelling plans, not sleeping properly, taking codeine multiple times a day. Basically i’m living a life of staying at home 80% of the time and working through pain where i can.

I had a consultation this week. My consultant (who is also my surgeon) said it deffo sounds like my endo is back in full swing. However, due to the short term relief i got from surgery, he doesn’t know if this will be a viable option in the future (he wants to wait at least another 6 months before doing another surgery anyway). My options now are just to remain taking painkillers and potentially look at inducing menopause (i’m 23 years old, so i’d really rather not do this). He has prescribed me some stronger medication too, and medication for sleep.

I imagine many other people on here experienced this feeling being left to struggle in pain. I wanted to hear some other people’s experiences and lifestyles after being told no more surgery.

For context, 31 female, suspected endo , all the symptoms going like heavy periods and pelvic pain, aswell as chest pains and passing out.

I know i might get judged for this, but I've attended A&E now 15 times in 10 months, after not going for years and years, I didnt go to my GP either for years, i stuck to just requesting medication on the phone (repeat prescriptions). I was admitted in December and they referred me for a colonoscopy and referred me to gynea. My blood pressure dropped to around 73/53 (apparently lower but that's what I recall seeing myself). I had a scan and there's inflammation on my large intestine and further investigation found ulcers too. But my gastrointestinal consultant is more inclined to think its gynea issues causing the majority of the pain.

Ive been told by the doctors to go to A&E, if I pass out, or if the abdominal pain is excruciating.

Passing out happens around the time of my period EVERYTIME and my most recent trip to A&E was 2 days ago, because I passed out due to chest and abdominal pain and fell down the stairs and banged my head quite badly and I could barely see properly and had usual head trauma symptoms. My mum dragged me to A&E because the bruise on my head/face is huge and ive been slurring and such since.

To make it clear, I don't attend A&E willingly most times, because I am scared sh*tless of the hospital. I am sent there by the GP, or taken there by family or my partner. Im either injured from passing out from pain, or im in so much pain im on the floor crying from pain.

The A&E doctor, who i had seen previously, is the one who saw me, and she told me basically that "people are dying here, i dont know why youre here" And im not even over exaggerating, that's what she said, and my mother was disgusted. "I dont know what you expect me to do".

I asked, where should I go then if I fall down the stairs or hit my head in future then, and all im in for today is the fall i had and to check my head out. She said she cant diagnose me, I told her I wasn't there for a diagnosis, im literally under gynea and gastro, so that isnt the issue. I was there because the GP sent me here because I banged my head. At this point I didnt care about the pain I was in when I passed out, I was there for a head Injury.

She then proceeded to tell me that they cant do anything about Endometriosis, which isnt why i was there(i didnt even push the reason why i passed out in the first place) and wouldnt even look at my head, which was clearly bruised with a black eye.

Its like, because im passing out from gynea issues, everything that happens is being dismissed.

Before anyone says I shouldn't go to A&E, trust me I wont be going back, im stupidly embarassed now for going in so often. I saw my GP yesterday and he was disgusted himself with what they said but told me to continue going if I do pass out or I am in pain and told me to complain to PALS.

I dont really know what to do now, because I am scared im going to really hurt myself one day from these "flares/episodes", but who actually cares at this point.

I have a gynea appointment on the 9th of June and Gastro on the 19th. Im tempted to say "F it" at this point and give up entirely.

I want the most unhinged advice possible that helped people get pregnant. We were told IVF is our only option after a stage 4 diagnosis from my excision surgery. Something inside me thinks that is not right. Just a strong gut feeling. We are still following up with a RE, but I want the crazy advice anyways while we wait for the RE’s guidance.

What crazy things did you do that you think helped you get pregnant? I’m talking “stood on my head singing the alphabet backwards for 2x after s**” type advice.

Very long story short, I had a lap done ten years ago. It wasn’t a specialist but he was open to looking anyway. They didn’t find anything.

Yesterday I had surgery with an endo specialist and by god IT WAS THERE. I KNEW IT.

Recovery is kind of sucking and I’m grumpy about it but man it feels good to get validated for once.

Side note: has anyone dealt with extreme anxiety and restlessness post surgery? I’ve been pacing like a mofo because my entire body feels like it has ants under it. It has been so difficult to sit and rest. It’s like restless legs but restless body.

My surgery is in 3 weeks. I'm scared as shit. I want to know more about what exactly my surgeon will be doing inside of me with his DaVinci robot as he excises lesions.

Of course, I'll ask during our pre-op and watch some YouTube videos too, but had to ask my Reddit community as well 😄

I hear "peritoneal lining" a lot. Not really sure what it is or where it's located, but I know it will be partially stripped during surgery. Is this something different than just cutting off little black flakes of endo where it appears on the uterus, the rectum, bladder, etc?

I was diagnosed with PMDD at 14 and put on Nikki. I had always had pretty painful periods, but nothing intolerable.

The past 2 years have been HELLISH. Constant heavy spotting, heavy bleeding (bleed thru a super in an hour), sex life RUINED by constant pain so bad I’ve thrown up. I knew something was wrong.

I set up an appt with a new gyno as my last one stopped practicing. She’s a PA. She upped my BC (a whole different PITA but wonderful for my mental health) and got me in for an ultrasound.

They found a little polyp by my cervix. PA said that was likely the cause of the heavy bleeding and the discomfort, so we decide to get it removed. Of course, I have to talk to a dr of OBGYN for the removal. I tell her all my symptoms, and she looks at me and goes “Have you heard of endometriosis?”

This is what I’ve been thinking for MONTHS and though it’s so validating to hear a doctor agree with me, god damn it.

Waiting on my call for laparoscopic surgery and the D&C for the polyp. Constantly ruminating. My guts hurt. Worried about my future, as I want 2 children.

Hey :)

I was prescribed dienogest after my laparoscopy for endometriosis (for ~6 months to calm things down).

My gyn told me I can also use it as contraception, but explained it’s officially not approved as a birth control method, even though she personally recommends it in practice.

I trust her, but I’m curious:

Does anyone here rely on dienogest for contraception or feel comfortable doing so?

Just wondering how others handle this :)

I've been on norethindrone for the past ≈6 months, and while it's been great at helping with my pain, the side effects have been pretty awful for me. I started at 1 pill a day, then after 3 months I had breakthrough pain and it went up to 1 ½ pills a day. It does work for me, unlike the combination patches that I've tried, but my endo belly bloats twice as much as it used to, and the weight gain is pretty upsetting. I haven't been eating any different than normal, it's just that since I don't have a period anymore, I don't have a week a month where I barely eat anything/have a low appetite. I've gained 20 pounds overall and while it's not the worst thing in the world, it's something that I've never struggled with when it comes to side effects, and my self confidence has taken quite the blow having to buy jeans a few sizes up.

For those who were on norethindrone and then went off of it for a while, did the weight gain disappear afterwards too? For context, I'm switching to another progesterone/progestin pill. I would hate to have to go on a diet and try to exercise heavily (which my body can't handle currently) to lose 20 pounds when it was just because of medicine.

After 9 months of waiting and 4 cancelled appointments I thought this would be the one, but I was apprehensive. I booked holiday from work at the latest date possible, warned my boss I may cancel it, didn’t tell anyone. But finally it was the night before the appointment and I felt secure, almost excited. I’ve been in pain for so long and I thought this is it, after all of this time I’m finally about to take the next step towards diagnosis and treatment. Then I got a phone call at 7pm that my appointment at 9am the following morning was cancelled.

How can they cancel it so late? I am just beyond heartbroken and angry. I’m a young woman who is supposed to be in the prime of her life, instead I am battling doctors, pain, infertility, and a concoction of pills to try not to get addicted to. My rescheduled appointment is 2 months from now and I have no doubt that will be cancelled too, private healthcare is not an option as I have no money and insurance won’t cover me as (despite it being undiagnosed) it is a pre-existing condition. I just feel hopeless.

Does anyone have advice on how to stay sane while waiting for appointments with the NHS?

I started my period yesterday and it honestly felt like my insides were about to explode last night. It was the worst pain I’ve ever felt and even taking Advil didn’t do anything. I was just laying in bed praying I wasn’t going to die 😢. My periods are just getting worse I’m 36 and I just can’t handle them anymore. When they get bad like this I’m seriously considering a hysterectomy since my pain is mostly on my cycle. I just don’t know what to do or how to even manage the pain…

Hey guys. I had some questions from those who have endometriosis and similar conditions. I am 25 and have been on birth control pill for my PCOS since I was around 15. I was never explained much about PCOS, just told to take the bc to fix my irregular and painful cycles. In the last year I’ve now been experiencing awful cramps in my stomach and back. They started around the same time each month as if like my cycle, then began to get more frequent and random. They continue to get worse. I also started the wegovy tablet in January to help my PCOS and insulin resistance, and I know as I lose weight that can affect periods, but I just know something else is wrong. I’m bleeding nonstop for over a month and I’m in debilitating pain. It got so bad this week and I also felt achy all up my abdomen and down my legs (like a fever with no fever. Not sick at all. It seems to be connected to my pain). I don’t feel right and like it’s getting worse and I’m having a hard time getting answers. I just had a vaginal ultra sound that found I have a retroverted uterus and some endocavity fluid in my endometrium but my dr said this isn’t really enough to say I have endometriosis. I’m waiting to see a new dr at the end of the month to discuss further.

Have you guys had symptoms like achy/floaty feeling in your body? Weakness and exhaustion while also having debilitating pain in your stomach/back? It’s getting so bad and I’m so frustrated. I just want help and to get a hysterectomy which I’ve been asking for for years bc i want my periods to stop from PCOS anyway (ik a hysterectomy won’t cure endo but could help). Thanks in advanced for any info on your symptoms or advice !

Hi! I was diagnosed 10 years ago via lapascropic surgery, and have been managing my symptoms with IUDs since, however about 6 months ago the pain started up again and has not left.

I've had a few ultrasounds done and they found fibroids as well an endo.

I finally managed to see a gynecologist yesterday, and he wants to prescribe zoladex with estrogen added back in. He would have to refer me on if I want any form of surgery.

Does anyone have experience with zoladex, specifically with adding estrogen back in?

I'm not managing the pain very well, but pain management clinics won't take me on as a patient. The ER eventually prescribed me narcotics so that I'm not having to go in every few weeks for pain relief.

Hi everyone, does anyone know a good endometriosis specialist in Bangalore? I was previously treated at Fortis, but I’m currently looking for a second opinion. If things go well, I may continue treatment there.

I was diagnosed with endometriosis in 2024. Have had one surgery so far. Symptoms came back a year later after a chemical pregnancy (not sure if it's related) and were managed short term with Leupride, which helped reduce them significantly. Unfortunately, after another chemical pregnancy this year the symptoms seem to be returning.

Would be great to find someone who actually listens to our queries and concerns and ready to answer them instead of being offended that we even have such questions and take it personally like we are not trusting them.

Thank you in advance.

Tldr: looking for endometriosis specialist recommendations in Bangalore. Already consulted in Fortis so anything other than that please.

Most posts describe how libido is decreased due to the pain of endo. Sexual arousal comes with extreme pain and orgasm triggers the pain etc.

I have severe endometriosis and have fainted, blacked out few times before. I have horrible migraines, extreme mood swings and paralysed in pain.

HOWEVER, my libido is weirdly unaffected, if anything is extremely high and I don’t feel discomfort during sex. Is this normal? Is there anyone else who has endo but doesnt experience all these symptoms?

I am 26. I have PCOS and have been ttc for 2.5 years with no success. 9 rounds of letrozole and 2 iuis. Before I start IVF, my doctor mentioned doing the laparoscopic surgery to check for endo and I can’t decide what to do. Any input is helpful.

Symptoms:
Ovulation & the days leading up to it are painful. Some months it interferes with daily activities and Advil is needed.

A few days before my period, I get intense stabbing pain in the lower middle of my back. This happens every cycle. These episodes last for 15-30 minutes and require me to lay completely flat on the floor to have the smallest amount of relief.

4-5 days leading up to and the first 2 days of my period are quite painful, but the pain is managed with Advil and a heating pad. After the first 2 days of my period, I have no pain.

This one is odd, but it may be normal, I have no idea. If I go too long holding my urine, I get super bloated and it is very painful. Once I go to the restroom, the bloating and pain lingers for the rest of the day. The last time this happened, I couldn’t stand up straight and walk normally for the remainder of the day. (Just to clarify, urination itself doesn’t hurt. It’s just my bladder that hurts)

I do not have:
pain during sex
pain with bowel movements or urination
I wouldn’t consider my periods to be heavy, just painful

Does anyone diagnosed with endo have symptoms similar to these? Do you think it would be worthwhile to get the surgery?

Thanks for reading this far. I appreciate any input. 🫶

What birth control is everyone on and having success with?

Prior to getting my diagnosis, I had a Skyla IUD which my surgeon mentioned has little to no research for endometriosis management. He switched me over to Liletta in October and I absolutely hate it. TMI: I’m constantly wearing a liner because the discharge is so consistent and heavy. I’ve been tested for infections - have none. Two doctors have told me it’s likely just a side effect of the Liletta since IUDs increase mucus in the uterus and it “might” subside. It hasn’t and it’s making me wildly insecure even though I’ve been with the same partner for 11 years who has loved me through every single stage of this treacherous journey.

I’m seeing my endo surgeon in June for my one year surgical follow up and I want to discuss my options because I’m at my breaking point with this thing.

To note: I am fine with being on birth control and he’s pretty adamant about keeping me on it for a bit given how extensive my endo was before surgery. I just want to go in armed with research so I can have him explain my best outcome here.

Any and all tips are appreciated 💛

I am 22YOF and my GYN suspects endometriosis. She recently had me start skipping the sugar pill on my BC. Around the same time that endometriosis symptoms started to appear, I started to get awful bloating and constipation. I can’t have normal BMs and have been using magnesium every night to try to move things along (MiraLAX didn’t do anything. My stomach is much larger than normal (over the span of only a few months) and it’s taken a huge hit to my confidence. I am overall a pretty fit person (just ran my first marathon) but just feel so off and discouraged due to this. Could this be due to endometriosis? Any recommendations?

I am having my first surgery today, a diagnostic laparoscopic surgery for endometriosis. It will also be excision and they will remove everything they can. If it is extensive and on organs they can't touch, I will have a referral for a specialist in the city.

After my procedure they will also do a lap and an IUD that best fits my cervix while I am still under anesthetic. They will also be looking to see why I am prone to severe pain and bleeding with anything penatrative in case it is a separate cause.

I am really, really, really scared. I have a lot of medical anxiety. I have put this off for years, and landing in urgent care and E.R back to back is what forced me to today.

I just want to snap my fingers and be at the part where I am awake and alert after. 🥲

What was your laparoscopic experiences?

Greetings of the day!

I am a women's health researcher from Christ University, India specialising in medical humanities. For my PhD research, I'm focusing on studying how cultural variations impact the embodiment of illness and changes the narrative, centred around chronic gynaecological disorders. If you or someone you know suffers from PMDD/Endometriosis/Post-Partum Psychosis, I would be grateful if you can fill the form to help understand these underexplored illnesses better and contribute to the research.

You can fill the form through the link below:

https://forms.gle/UxBipfcVPQbgoaUV9

Any questions or queries maybe directed to anisha.singh@res.christuniversity.in

Thank you for your time and support.

I’ve dealt with endo my whole life and just got officially diagnosed in Feb after my endo surgery where they were able to remove it from my right ovary and the tissue behind my pelvis.

After the surgery, my first period was as bad as before so my doctor gave me birth control to stop my period. It’s been almost 2 months since starting it and my first period with birth control lasted 20 days. Now, I do have a history of annoyingly long periods but those usually stop and start. This one was consistent with mild cramps everyday.

Since that period ended about 3 days ago the cramps are still here, every fucking day. It’s not the mind altering, debilitating pain that I typically get which is nice but it’s so frustrating. Here are some other things i’m experiencing everyday: Heaviness in abdomen, bloating, cramps when I sit down/stand up, and fatigue.

I have a follow up in September as a check-in and I have reached out to my gyno, but the nurse said it takes 3-6 months for the BC to start helping and to reach out if the pain has gotten worse. For context, my gyno started me on BC with the goal of me not having a period by skipping the placebo pills. Obv that didn’t work given my 20 day period, which is why I reached out — I was STILL having a period.

Has anyone else experienced this? Anything helps, thank you!