So, I got my excision surgery in 2020, and I can feel pain creeping back…I suspect bowel endo bc I have constant nausea & constipation and none of meds are helping me. Also, I am starting to have period cramps like before.

I know hysterectomy won’t cure Endo but my husband and I both don’t want kids, I want hysterectomy with the excision surgery, simply bc I’m so done with having period cramps & I no longer want to take dienogest.

I’m 39 and I’m hoping me being older would convince the doc to give me hysterectomy along with excision surgery…But I live in a super conservative (hint: Asia) county and I’m worried my doc would refuse simply bc “I might change my mind.”

He is literally the only excision specialist in the entire country and if he doesn’t do it for me no one else would…

So, could anyone give me perhaps “tips” on how to convince the doc to give me hysterectomy along with the excision surgery? (Nothing has shown up on images so I need to convince him just based on my symptoms…)

Long time lurker here - you guys have so so much knowledge and inspired me to really push for a diagnosis. Just wanted to say thank you!

Had my MRI results after 3 years of asking the NHS for scans and there is evidence of endometriosis, adenymiosis and PCOS. Kissing ovaries and evidence of some adhesions. Feeling so relieved that there’s something there and it wasn’t all my head but the adenymiosis and the potential PCOS is just a shock. I will have to go for further tests to confirm the PCOS.

Hopefully this is enough to get sent to a specialist - living in Wales, where we don’t have right to choose, it has been an absolute battle! What a relief it wasn’t all in my head though… happy and sad tears today!

I'll try and make this short. I was diagnosed with endo a few years ago after emergency surgery to remove an endometrioma (and with it, my left ovary and Fallopian tube as I had ovarian torsion). I then had a second surgery a month later to remove endo lesions, mostly in my pouch of Douglas, (and also check for cancer, because it turns out my endometrioma had a borderline ovarian tumour in it). They recommended a total hysterectomy (everything but the cervix) but I refused because I didn't want to go into early menopause.

I was put on dienogest and have been on it for over two years now. I am lucky enough to tolerate it very well and my only symptom is a bit of weight gain, which I've slowly managed to get rid of. I also had three-monthly transvaginal ultrasounds to monitor for more cysts, which have been changed to six-monthly ultrasounds now as everything has been going so well.

However, late last year I started to get a weird pain on my left side where my ovary used to be. I also had symptoms of what I thought was a yeast infection (it wasn't) or a UTI (it wasn't). After the left side pain got worse, my doctor did an ultrasound and referred me for a colonoscopy and stool samples. Samples were negative for everything, but on the colonoscopy they mentioned it was difficult to get the apparatus through on the left side due to adhesions. I confirmed with them that these were caused by my endometriosis.

So now what? The pain is annoying but honestly not that bad - I don't have to take painkillers for it most days, for example. My bowel movements are mostly normal. I'm still having weird UTI-ish symptoms, mostly burning (not while peeing, just all the time), and a feeling of discomfort and heaviness in my lower abdomen. I am going to my gynaecologist in a week or so to get a referral to the endometriosis centre who did my other surgeries, but I'm scared. I don't want another surgery. Are there any other options available or is that the only way forward?

I seen an NHS gynecologist today and he actually listened to everything, addressed my concerns and is requesting a pelvic MRI to see if there's something to see there.

He wants to do that imaging before jumping into a laprascopy first because he doesn't know if a lap would be better to do at a local hospital or an endometriosis specialist centre and is concerned with the level of pain and bleeding etc. I'm experiencing.

He actually DIDN'T bring up birth control at all (😱) just listened to my symptoms and looked at my ultrasound results etc and asked a few questions and then said "right, we're not going to bother faffing about with unnecessary things, I want you to get a pelvic MRI and then I can make an informed decision about what to do next" and I'M SO THANKFUL to be listened to. It was refreshing and has me hopeful that someone is going to take me seriously. For once.

Takes awhile to get stuff done via the NHS, I know the MRI probably won't be for at least a couple of months and who knows when an actual surgery will happen but Y'ALL.

I'm just so damn thankful. It was a ten minute appointment without me having to argue or over explain or talk about fucking birth control or anything negative at all. He was kind, he listened, and he's getting something done about it. I went in prepared for battle and I'm sat at home now crying happy tears because I feel heard.

So I've always had a problem with bowel movements... (do you see where I'm going with this?) and after waiting 10 years for a diagnosis and thinking its ok to not have a bowel movement for 3 days, I realised actually that its not so great. Im 27 and already suffering from external hemorrhoids because endo is causing irregular bowel movements. Now I'm very lucky, I can go to the gym 3 or 4 times a week, even lift heavy weights and get no backlash from my body, so its not about my inability to move. I drink 2-4 litres of water daily, and my diet is pretty good - high protein, low fat, medium carb in take. So I'm thinking my fibre intake is... Poo😂 just wondering what you all do to increase fibre in your diets? Or if you've had the same problem...im so embarrassed. I think i need to know im not alone. 🐺 Thanks in advanced. [written while sat on an ice pack and got suppositories to hand😅]

My mom is in her early 60's and started experiencing light spotting last week. She went in for an ultrasound which showed endometrial thickening at 14mm with a 4cm mass. Has anyone had a similar experience and it turned out to not be cancer?

Hello, I am a 19-year-old female who was recently diagnosed with endometriosis. I just had my one week follow up from my lap and I have some questions/concerns. My doctor told me the endo was throughout my abdomen/on some organs, and the frequent cysts and ruptures in my left ovary were due to the condition. However, what scares me the most is that my right fallopian tube is almost completely covered in it.

If there’s one thing I’ve wanted since I was a little girl, it’s to be a mother. My doctor informed me that there is still a chance I can conceive and carry a child, but we won’t know for sure until I try. Of course, being only 19, I didn’t plan on having kids for at least another five years. As someone with anxiety, this means five more years of overthinking and fearing the unknown, especially now that I know it’s a strong possibility I could struggle with fertility.

I wanted to ask if anyone here was diagnosed at a young age and had success with having children. What was your experience? Also what medication/method worked best for you?

I have been on and off birth control since I was 15 and have had a Kyleena IUD since January 2024. My doctor offered to switch me to the Mirena IUD, back to the pill (Slynd, which I’ve taken before), the patch, or two other medications (I forget their names) that could potentially send me into menopause, which I definitely don’t want.

I have still experienced horrible pain over the past year with the IUD, but my mental state has been the most stable it has ever been while on birth control. When I’ve taken pills in the past, I’ve been very sensitive to the hormones in them, and my mental state suffered no matter which one I tried. This is what initially led me to get an IUD. So l'm not really sure what direction I should go, should I keep the iud I have? Or should I take the risk of switching to another form of BC for better pain management.

Thank you SO much in advance for any/all of your insights!!

I am a freshman at college away from home and my OBGYN. Last semester I was dealing with breakthrough bleeding and horrific pain despite being on birth control to stop my period. I had my second laparoscopy over winter break but just a month after I’m dealing with terrible pain again. My doctor told me lupron could be my next best option but it seems to have mixed reviews. I scared of hot flashed and other symptoms, but I am desperate to just be able to get through the day and be a college kid. What has/has not worked?? I feel so isolated in my pain I’m not sure what to do.

I've struggled with iron deficiency for years, even since way before I was diagnosed with endo. I feel like no matter what I do my iron is always low/deficient. I take multivitamin supplements daily that have 12mg of iron in them (among other things like vit C, b12, etc...), I take bc pills to fully stop my periods and I try to eat red meat at least 3 times a week but I still just feel tired all the time no matter how well I sleep.

I had an iron IV infusion a few months ago and it did help for a while (like maybe 6 weeks? then I started taking my supplements again) but I haven't had any periods since before then and I'm feeling tired all the time once again.

Currently have a GP apt booked for next week to see if it's even my iron causing the tiredness (and not something else like my bc) but I just wanted to see what y'all do to manage your iron/vitamin levels.

I just feel like I can't understand what I'm doing wrong or what else I could possibly do here.

Also not sure if it's worth mentioning but I've never had ablation/excision surgery, only BC for symptom management.

Very heavy bleeding.

Got my diagnositic lap in a couple weeks (clinically confirmed atm) and even with health insurance I’m balking at the cost of it. I’m not in the US, but I’ve still had to ask for help covering the cost of it, which I absolutely hate.

I know it’s different for everyone but did you feel better after surgery? How long did you feel better for?

Hoping to god that this helps long-term, don’t think I’m going to be able to afford another one any time soon 😭

If I take a combination of tramadol and naproxen before sex to help mask some of the pain and then just power through painful sex (if that’s even possible w the pain I’ve been experiencing), what are the risks and potential damages I can put on my body? If my endo is causing me to tap out, should I just listen to it or is finding a way to mask some of the pain and trying to last more than five minutes in excruciating pain OK to do just one time? I’m sorry if this is a bizarre question. I’m just really curious. I really miss having sex. I have an appointment with my OB/GYN in two weeks and I want to try having sex this weekend with my bf, but I’m worried about causing damage to my body. The last time I had sex was about three weeks ago for about 10 seconds before I bursted out crying.

So... I got diagnosed with endo. I have a large cyst in my ovary (tennis ball size), the mri showed that my ovaries have been moved together and that there might be something behind my uterus but they could not be sure. I do not have much pain, but I am mostly super tired, I think from iron deficiency due to heavy blood loss (am taking iron). Doctor says there are 2 options. 1. Removing the cyst, but as I am not in much pain it would not help my symptoms (especially tiredness) according to her. 2. Mirena iud, which she seems to prefer. I have bad experiences with hormonal birthcontrol (pill), as I felt constantly very depressed and bloated while on it long term, and when I first started taking them I would get almost aggressive for a few weeks while adjusting (would not want to put myself and my environment through that again). My question is: what are your experiences with either option in terms of reducing fatigue and blood loss? For those previously not reacting well to oral contraceptives, was Mirena different? Of course I know every body works differently, but reading experiences of others might help me decide.

I have recently had to take time off work as I had come down with nausea, terrible stomach cramps (feeling them up my chest, sides, back and down to my pelvis), bloating, gas, and diarrhoea. I also had crazy dreams which I usually only get if I have a fever so I think I had a mild one. I spend the weekend on the couch with no energy at all and was very tired. I thought I had caught a stomach bug but I have never had cramps so bad with any other stomach flu before. I spent 2 nights with little sleep from the discomfort and now I have just started to breakthrough bleed (light spotting but with clots) in the middle of my cycle on the tablet slinda (drospirinone). Been on it for 8 months now.

I've had what I think was a cyst rupture before while I was off the pill as I was ovulating and it felt similar with nausea, stomach upset and cramping, but it was only for a few hours. This episode lasted 4 days and now I'm continuing to spot. I did a pregnancy test and it was negative. When I had my Laparoscopy they couldn't see any endo but they said they would need to do more tests to see if it was in my bowel etc. and that the pill should stop the pain.

Did I get gastro and then my period or was this all just endo pcos related? Would love to hear what others have experienced and if this is similar.

Since getting diagnosed I feel like this illness has taken everything from me, my job, my financial stability, my joy, my creativity, my sanity. I’m struggling to find a wfh job and currently unemployment covers my rent and that’s it. I can’t enjoy my life, i’m constantly stressed and in pain. I’m still waiting to see an endo specialist and my previous gynaecologist has to tried to convince me it’s all in my head (despite removing adhesions in a lap) I’ll be 27 in a few days and honestly i just want to die.

Hi everyone, I figured it would be a good idea to share my experience with endometriosis and the medical experiences along with it. So hi, I’m 23F, truthfully this story starts almost exactly 10 years ago. So when I was 13, I got a “period” that lasted for 3 months, I had exactly 2 days during that whole time that I didn’t bleed. It was extremely heavy and I was becoming extremely anemic. I was chewing ice daily, my fingers and toes were always frozen, I was always cold, there was no color to my face, and I had to learn pretty quickly how to use tampons and would go through a couple of supers a day while still bleeding through onto pads and some day I had to wear 2 pairs of underwear with pads in both and a tampon, and if I didn’t make it to the restroom in time, I would still bleed through. I remember getting my first cramps at 12 and thinking about how god awful they were, I have since realized that they were way more painful than they should’ve been. (For context I got my first period only a few months prior). Back to being 13, I ended up going to the hospital after staying the night with some friends at a hotel, I bled through a tampon, a pad, a towel that was folded up, and the sheet. It was on the mattress itself. I went home afterwards and was so lethargic that my mom said it was time. I was already seeing my primary care doctor about it and she had prescribed iron and this pill that was supposed to stop the bleeding but it didn’t do anything. I ended up going to the children’s hospital, waited in the ER for a while, had an ultrasound that came back clear, and eventually I was admitted to be monitored overnight. At some point in the morning they gave me some medicine and I went back to sleep, but around 8am they came in and started my discharge process. I got up to use the restroom and I almost didn’t make it to the door (10ft) and I’m shocked I even made it out of the restroom without passing out. They came back in and told me that they ran my blood again and saw that my hemoglobin was at 6, the average is generally about 12-15 and 16 is considered high but healthy. I ended up staying for 3 days and had a blood transfusion and got started on birth control and iron supplements. Started out for the first couple of weeks that I was taking multiple of each every day multiple times a day. After all of this, everything seemed pretty much fine. The occasional painful period but nothing really out of the ordinary. Fast forward to being 18, it’s about a week or two before the world shuts down from Covid (little did I know) and I go see my gynecologist (that I began seeing during my stay in the hospital) because I’d started to experience very painful periods and pain with sex and I did plenty of research and compared possible conditions, but my doctor came to the same conclusion as me: it sounds like endometriosis. So she said all of the treatments that we could try, surgery being the last option of course. Then the world shut down and I wasn’t able to being any sort of treatments. Eventually I changed my birth control and that didn’t help, I had probably 4 or 5 internal ultrasounds and nothing was found. I had so many visits with my doctor, and another birth control change (IUD) but Covid was still running rampant and ORs were reserved basically for emergency situations only even a year later. It wasn’t until 2023 that the ORs opened back up for non-emergency surgeries. I finally got scheduled for my exploratory laparoscopy and laser ablation. (I ended up booking the first operation in the spring but had to reschedule and couldn’t do it until September 21st (I like to joke that no, I do not remember the 21st night of September, I was still coming off of anesthesia)) I had finally FINALLY gotten a real diagnosis and had most of the disease removed from my abdomen. The recovery really wasn’t bad for me, I was sore for about a week and for the first few days I couldn’t lay on my back with my legs laid out without it feeling like I was going to rip my stitches. But it’s been a year and a half since my surgery, I still have some painful periods here and there, but my periods have gotten so light that they’re practically nonexistent, minor cramping from time to time, I got energy back (not all of it, I’ve got other medical things that I’m trying to be my own advocate for) and ultimately, I wasn’t living with dread for what the coming days would look like anymore. I mean it caused arguments with loved ones because I was in pain and cranky and it at times seemed like I was a flake. I was finally able to go on trips while on my period and the week before and after without having to bring along a whole pharmacy of pain killers and a heating pad and my tens unit. It became embarrassing at times to go in public with the wire for my tens unit just hanging out because there was nowhere I could really put it while having the pads on my abdomen and back. I could finally get out of bed more. If you have the ability, don’t wait until it gets so debilitating that you can’t function without ruining your liver and your body just to have even the slightest relief. My final straw and when I said I had to book the appointment immediately was a trip I went on to the beach, it was stunning, I loved it there, but my cramps hit so hard that I was taking double or triple the recommended amount of aleve, I was having to drink heavily, I had a heating pad and I took some STRONG cbd and still used my tens unit. It was then that I was finally able to relax and take a nap (probably because of the cbd tbh). But I was having to be publicly intoxicated in order to walk through the town and not be keeled over and struggling to put one foot in front of the other. I went home from this trip and made the call. I was able to get in 2 weeks later and it was the best decision I’ve ever made.

Thank you for reading my story, I know that while my situation definitely sucked, I’m still fortunate enough to have had a doctor hear me out and stick with me the whole time. My post op appointment, she seemed as giddy as I was about my quality of life improving. I sincerely hope that those of us with uteruses get to be heard and we can have a less invasive way of treating this disease. We deserve better than this, especially averaging 6 years of advocating for ourselves to only be told we were right all along.

Also, my symptoms may be considered “unusual” but its good to show what it can look/feel like for different people. Mine was like the worst uti of your life, constant pain around my urethra for some reason, the constant urge to pee but I didn’t have to, severe pain in my back and lower abdomen, breast pain, for a while I got migraines but changed my birth control and that helped a lot, the constant urge to “bare down” almost like a contraction and yet nothing would happen. I sincerely hope no one has to suffer like I did, though I know that many people do, just know that it gets better, the grass really is greener. Good luck❤️

You know when u go to an appointment with your gyno because your pain has suddenly gone back full blast and you want to stay ahead of it?

Well… i damn wish id waited longer now!

So mostly the last 4-5 months ive just had pain on the few days leading up to my period. No spotting, hardly any bleeding, and no pain in between periods, no more leg pain etc. So he decided there wasnt much he can do because my last surgery was only a year ago, and im on bc (i didnt want to add more). (I trust him and i understand his POV as ive hd 3 surgeries for wndo in the last 3 years.

Anyway i saw my gyno last week, and i kid you not - since the day AFTER…. i have had brown spotting everyday, BAD pain everyday, leg pain and numbness, and my period isnt due for another weekish. Sometimes it feels like the world is mocking me! LOL.

I’m super nervous about my laparoscopic surgery next week…. I have anxiety and when I was younger I had a traumatic experience with general anesthesia. I had surgery on my feet and when I woke up I had the worst migraine ever. I was so sick and throwing up and miserable and only 7 years old…. I know you get nauseous sometimes after a lap surgery but I really don’t want another migraine like that….. not to mention I already have stomach problems so the pain won’t be fun…. I’ll have pain meds but idk how I’ll react to them…. Any advice..?

I had a double cystectomy. I had a fused ovary and bowel on my left side. But my right side is experiencing pain. Especially when I eat. They also removed my appendix. Im spotting and I notice I pass dark blobs when I poop. I had some complications (severely constipated due to the fused bowel) the CT scans are nog picking anything up and the Ultrasound was inconclusive. I am experiencing pain on my right side in my pelvis. Today the blood I passed looked a bit fresher than normal. All the doctors and my surgeon just seem very dismissive and tell me this is normal and that the diagnostics aren't showing anything concerning. I want to know if this is normal... I went a year of my pain being dismissed and the MRI I had prior to surgery didn't even pick up my fused organs or all the endo. My surgeon said there was a lot a lot. What do I do?

how do you keep your energy levels up with endo? I've been doing this for 20 years now and im so zapped. I drink coffee in the am. I take beef liver/ heart supplements and that seems to help a little. its kinda naughty but I do like the nicotine pouches when I need an instant boost. doing laundry, making dinner seems to take alllll of my energy. I do a mini bike ride on days I can. endo is soooo lame

I've had pelvic pain for 18 years. I was diagnosed with endo years and years ago and I managed everything with continuous BC for over a decade and have had very little pain.

A few years ago, I had to switch to progesterone only options because of migraines with aura. Since then, I've had lots of cramping, sharp pains, and pelvic pressure that I can't seem to calm down. It is nowhere near as bad as when I had regular periods, but it is not great. I recently had a lap that was all clear. It was with a regular gyn (I know, I know).

Now I'm trying to get to the bottom of my pain and I've had a few clear ultrasounds. I asked for an MRI with my new gyn and it was such a fight to get it. I was nearly in tears by the end just saying I want to find answers. Is it totally unreasonable to ask for an MRI? I got the referral, but UGH.

She also wants me to go to a gastro for a lot more tests (even though I have no gastro symptoms at all) and was given a referral to a chronic pelvic pain specialist. I'm also in pelvic floor PT. Why is this so hard? Has anyone else been able to get to the bottom of challenging cases?

Hi folks, I love in Vancouver, Canada and am just beginning my Endo diagnosis journey and was hoping for a obgyn to be referred to from my GP. I know there is an amazing pelvic and endometriosis program and BC Women's but you first need to be see by an OBGYN before a referral is made there. I wish I could be referred directly to them.

Therefore, I was wondering if anyone had any good experiences with Endo literate OBGYNs in the lower mainland? Thanks!

I have an appointment in a month but can't get in sooner. I've never went this long without a period! Plus I'll cramp randomly every so often, not as bad as a period though. I know this can happen to some folks with PCOS but my androgens have always shown in range on blood work (I suppose anything can change at any time though?). Pregnancy is impossible, so I'm a bit worried about what could be going on. My gynecologist told me years ago that I most likely have endometriosis though I've never had the biopsy test.

I had my ablation New Year’s Eve, and this is my second period. My cramps are still severe enough that my prescription pain medication cuts it in half. My leg pain and thigh pain are constant now when before it was on and off. The bleeding is about the same, but I have a lot more pieces of tissue instead of just a couple clots. Then, I’m have this really weird dull pain around my inner thighs closer to my butt all the way up to my vagina opening.

I messaged my doctor, and he said it takes about three cycles to see a difference. Is this normal? Is anyone else going through something similar? I’d like to hear any and all stories/advice.

I live in a small area so there’s not many places I can go to for this type of thing.

Hi everyone,

I am new to Reddit and wondering if anyone has experienced anything similar and could provide some advice. I was diagnosed with PCOS when I was eighteen years old. I spent a few years on metformin as well as birth control pills. I stopped taking both medications (metformin about 5-6 years ago and BC about a year and a half ago). I’ve noticed that within the past year of coming off BC, I’ve been experiencing pelvic cramping, nausea, and dizziness during ovulation. However over the last couple of months these symptoms seem to come more often before and after my periods. Back in November my OBGYN suggested going back on BC and a trans vaginal ultrasound. The ultrasound showed one small cyst on my left ovary but no other abnormalities. I’ve been scared to start the BC because of the horrible reviews of the type of BC (Milli). Fast forward to this weekend, on Saturday night I started to experience pelvic pain again and it has not gone away since. Advil does not help. I went back to my OBGYN today and he believes I may have endometriosis. He prescribed Orilissa however my insurance doesn’t no cover this expensive medication, he suggested that the next step be BC before we look into surgery. This pain is unfortunately preventing me from going to work because of this I have utilized most of my sick leave.

Has anyone had experience with Orilissa? Is surgery worth it? Any tips on how to ease pain? How long do these type of flare ups last?

Thank you in advance <3

Hey everyone,

I’m currently in the process of getting diagnosed with endo. my doctor wants to do a laparoscopic procedure to see what’s going on, so i thought i would read some of what yall had to say and see if i could relate.

I can often relate to the types of pain people are experiencing(back and pelvic pain mostly), but I experience this pain almost constantly. my gyno put me on birth control but it doesn’t do much it seems.

Does anyone else have this experience? A lot of the posts I read about are people experiencing symptoms mainly on their period. I don’t really hear a lot about constant pain; yet my doctor still suspects endo.

I recently went through a handful of doctor's appointments since last year to figure out if my pain was endometriosis. Finally last week, the different doctors from all the different departments have concluded that all signs point to endometriosis.

The senior doctor I've talked with from the gynecology department shared with me that she doesn't think we need to go through with a laparoscopy because it's a very high percentage I have endometriosis and won't need to confirm it through surgery if I don't want to. She also shared that either way, next steps would be for me to get back on birth control pills / progesterone pills OR in my case, pregnancy.

I'm in the life stage where I would hope to try for kids this year so going back on the pill right now wouldn't make sense for me. That being the case, the doctor mentioned that pregnancy can actually alleviate a lot of the pain because I'm essentially not having surges of hormones occur the way I would have on my cycle. Being pregnant and being on the pill is the same where my cycle stops aka no flare ups.

She shared that being pregnant while dealing with endometriosis is like having a pain free year (because when you're breastfeeding you're also not ovulating, so symptoms lessen even then because hormones are all at bay). She even shared that in some cases pregnancy has helped women's bodies regulate in different ways, even to the point it has had the effect where endometriosis symptoms can disappear completely.

If this is true... this would be a complete win for me. I was already planning / hoping for getting pregnant this year. I also really would not like to be on the pill long term again. If pregnancy forreal helps with the pain and may even help endo symptoms lessen, why the hell not? (Of course this is very specific to my life where I am in the life stage where I was already planning to have kids around this time).

Is this just some hocus pocus the doctor told me or have others truly experienced this? I would love to know what your experience with pregnancy while having an endo diagnosis has been, the good and the bad! I want to know what I'd getting myself into. Thank you!!

It’s either that they think endo is in the uterus and not anywhere else, even though that would be adeno lmao, or, they think that endo is uterine lining tissue. It’s not that hard to understand at all, it’s so lazy and it pisses me off. How am I as a patient knowing more than you, someone who went to medical school. It’s just sad and pathetic. My doctor also said since I likely have stage 1 it shouldn’t cause that much pain, even one spot of endo can cause severe 24/7 pain and someone with stage 4 can have no symptoms. It’s ridiculous that they don’t know this. This disease is no joke yet it’s treated as one. I’m tired of trying to educate my doctors and they still brush me off. How is a disease this awful and this COMMON still not understood at a super basic level. A quick google search would give them that answer. Just lazy and greedy.

Hey everyone, this is my first post on Reddit because I thought it would be a great way to figure out more about what’s going on with my body.

Just curious to see what people who have endometriosis or similar conditions would think… I’m a 20 year old female that has been experiencing pain in my lower abdomen, mainly on my left side more often than my right. In December of 2023 I went to the emergency room due to intense cramping pain and it turned out to be an ovarian cyst. I had the cyst removed in early January of 2024. In March of 2024 I experienced a similar pain, but by the time I got an ultrasound the scan showed fluid, pointing to a ruptured cyst. I assumed this must have been a smaller cyst that ruptured because I had similar pain but not the extent of the cyst I had removed in January. In May, my gynecologist changed my birth control to a higher dosage to prevent my body from making cysts. Because of the previous birth control and current birth control I’m on I never get my period, even when I am on the sugar pills. I believe it is because of my size since I’m 5’1 and around 100lbs. Fast forward to July, I had similar pain and was convinced I had a cyst but when I had an ultrasound done there was nothing wrong. I always have an on and off cramping-like feeling in my lower abdomen. I have normal bowel movements, sometimes there’s constipation or diarrhea but nothing concerning. I thought it could be IBS but for that reason I didn’t. My pain is also strictly in my lower abdomen near my ovaries. This past January I had a feeling that I had another cyst because of similar pain. For the past 4-6 months I bloat like crazy. My pain also increases after drinking or the day after drinking. I went to the doctor and she ordered an ultrasound after feeling that my left lower abdomen felt tender. A few days later I woke up in blood as if I were to have suddenly gotten my period—which never happens. I called the doctor and she said that is most likely due to a cyst rupturing, especially since my pain was especially bad on that day. I am still going to the ultrasound appointment so we will see what’s wrong.

Anyway, I genuinely don’t know what’s wrong with me. I am so sick of this constant uncomfortable pain, I have started to overlook it and live day to day but I know deep down that something is wrong. If any of you have any ideas, please let me know.

Thank you.

Hi! I think I have endo… I get very bad 12 o clock anterior vaginal pain during sex. I’ve been told it’s hormonal and it’s my urethral sponge tissue. It feels like that tissue is being stabbed and stretched and raw.

Well, I started estrogen cream and it is flairing this spot so that it’s aching. It makes me think that this is endo and that the estrogen is feeding it? Or maybe I’m just adjusting to the hormones? It’s not like the ingredients are bad - it’s two ingredients, the estradiol and emu oil.

Does anyone else have similar pain?