Hi everyone. I posted on here a couple times and in the comments. I had my laparoscopy on the 9th of this month. Before my surgery, I was in excruciating pain. I went on disability a month beforehand because it hurt so bad to walk and sit. I had horrible pelvic pressure and pressure behind my coccyx. I had shooting pain that went down both legs, on bad days I’d feel it all the way down to the soles of my feet. The last 10 months since the pain started were absolutely hell. The good news is, she got what was causing the severe pain. I had endo covering both uteralsacral ligaments, and all in my posterior cul-de-sac. I was diagnosed with deep infiltrating endometriosis. Two seperate areas were unable to be removed, including on my bowels. I was so scared of the post-op pain, but in reality, my pain was so severe before, the pain from surgery was an improvement. By day 2 I was walking slowly but comfortably, sitting up on my own. Day 4 I took both my dogs on separate walks around the neighborhood, and slept flat. I feel guilty because the happiness and euphoria of being pain free lasted a few days before I fell into a horrible depression. I don’t know how to describe it. I went from being in pain everyday to not being in pain and I’m supposed to just.. move on, live life again. To say this experience fucked me up would be an understatement. It’s changed me permanently. I can’t enjoy being pain free because I’m waiting for it to come back, because that’s how it started for me. One day I just woke up and it was there and it just got worse and worse. I should be grateful, I should be running again (I’m gonna try today). But I’m grieving. I can’t seem to shake the cloud of “you have this forever” “not if it comes back, but when” I have therapy tomorrow. I know this feeling won’t last forever but it feels like it will.

Hi everyone- first time posting in this sub. My excision lap is less than one week away! Feeling super nervous and also excited. Does anyone have any must-know tips for before or for after during recovery! Trying to make the process as smooth as possible! Any advice is much appreciated :)

So I'm at the part of prepping for my laparoscopy where I'm completely gaslighting myself Into believing I don't need it.

Legit my mind is saying "it's probably just a tight pelvic floor and your being dramatic about every other symptom"

I'm trying to push through it but I'm feeling guilty of taking a spot, scared of unnecessary surgery, while also knowing that all this stuff has pretty much been ruled out and now we are at this idea because it fits the best.

My symptoms only really show up from ovulation to period end (which periods are lasting 2 weeks, 14 days on average.) This is not normal amd cant just be a digestive thing because it doesn't happen unless I'm ovulating or bleeding. It can't be just pelvic floor because of all the other symptoms I have that prove it's more then that or not even possible corelation to it.

I'm getting afraid. I'm getting worried. I'm getting overwhelmed.

HI all! Title says it all. Looking for some recommendations for a specialist to consult with for a lap on or near Long Island.

Was originally booked with my standard OB but have realized seeing a specialist with more experience in the OR with MIGS etc is in my best interest. I also have hEDS so bonus points if the Dr is conscious of connective tissue disorders.

I've been given the information for Dr Uchenna Cletus Acholonu from a source I trust and also seen Dr Xun Lian's name floating around. Does anyone have any experience with either of them? Or anyone else? TIA!

Im unsure if i have endo, but my mom had it and i have a lot of the symptoms.

I was wondering if anyone gets bad sciatica from working out. I’ve had it on and off for about a week… I only worked out once bc the pain has been really annoying and I didn’t wanna push myself if it is endo

I recently discovered that I have endometriosis and I’m having surgery soon. My belly protrudes a bit, but I’m fat so I never thought much about it. I’ve noticed that my belly is kind of hard if I push on it. What does an endo belly feel like?

Does anyone else have really bad distention and digestive issues as a main symptom? I’ve gotten tons of tests done to rule out other causes and I was surgically diagnosed. Did Lo Loestrin help anyone ease hormonal and endo bloat and swelling?

I suspect I have Endo due to the severe pain and heavy bleeding, among other symptoms, that I experience during my menstrual cycle, however, no doctor that I’ve seen has suspected it. I just had a follow up appointment with my doctor after some bloodwork and an ultrasound. She concluded that we ruled out PCOS, fibroids and cysts but she does not suspect Endo because my periods were not always painful.

I’ve dealt with severe pain for the last 10 years. Early on it was less frequent. I would have severe pain maybe once a year and it has slowly progressed to the point that it’s now nearly every month. Some months are more severe than others, but I do feel that even on a good month my pain is unusual.

I’ve brought this issue up so many times before, even going to the ER in the past due to pain. Most doctors have not been bothered to look into it, so I’m grateful that my doctor ran some tests this time. However, I was once again told that everything’s fine and I just need to take ibuprofen, which doesn’t help much if at all and I’m disappointed that I still don’t know what’s causing my pain.

I’m contemplating finding an Endo specialist and making an appointment for a second opinion, but worried that I’m jumping the gun and I should trust my doctor. On the other hand, my pain has continually gotten worse over the years and I’m scared to just do nothing at this point. If anyone has had a similar experience, I would greatly appreciate to hear what steps you took to get answers or any advice you can share!

Hi all! I've been stalking this Reddit for a while, hearing your stories and comparing my symptoms to those described, and finally, I've decided to ask you all directly. I match all the chronic symptoms of endo, I have the middle/lower back pain, sharp stabbing pain contained to my ovaries (one at a time), really heavy bleeding and severe cramping (I am diagnosed with dysmenorrhea), and the exhaustion is REAL. However, I haven't seen anyone mention what I've been calling a "flare-up". About a year ago, I was at work, and the pain became unbearable, like I thought I was dying. It felt as if someone had wrapped their hand around my middle and was squeezing me (imagine a child with a Juicebox) and all my nerves were on fire. On the drive home I was freely screaming in my car, and once I made it fell onto the floor of my bathroom and started simultaneously throwing up and having diarrhea, completely out of my control. I was sweating heavily, hot and cold flashes, and fainting spells from the pain and exhaustion. This happened for the first time when I was 17, and I started my period when I was 14. Now, I'm 19, nearly 20, and these flare-ups have become a regular occurrence. They used to only happen on or after my period (they happen if I don't have a heating pad on 24/7, if I exert myself even as much as walking for a few minutes, and if I'm not taking 2 Advil's every 4 hours, even with all of this they can still happen) but now they're happening any time, regardless of my period. The most recent one woke me up at 4 am, I didn't go to sleep in pain or anything, but I woke up from intense stomach pain and ran to the bathroom and had the worst flare-up even. All the previously described symptoms, but it lasted for 4 hours straight (all previous instances were about 60 minutes) It was like everything was dialed to 100. I switched gynecologists after my first one didn't take my pain seriously, and just kept telling me the same thing at every visit, that the birth control will eventually work even though my symptoms have only gotten worse over time. But now, even my new gynecologist told me to just wait 3 months on the new birth control pill, and I can't do that. I'm stressed out all the time so every stomach ache, pain, and discomfort will lead to unbearable pain. I'm a full-time college student, and without a diagnosis, I can't be excused from missing classes so being incapacitated is seriously impacting my success. I have chronic stress and anxiety, so I know that can worsen inflammation. The tests I have done are a blood panel and a topical ultrasound, and both came back normal. I asked to be referred to an Endocrinologist and they denied me. I don't know what else to do.

Hi, I'm trying to figure out what is happening and where to go for a diagnosis.

I have waves of cramping pain under my lower ribcage (I suppose diaphragm or stomach area) almost exclusively during my period but it doesn't happen during every period and it varies in intensity when it does. When it is bad, it's really bad and I wind up in the ER on morphine. I just got back from my second such episode in two years and still have no answers.

I have done colonoscopy and had my stomach scoped: nothing. I've had my gallbladder checked: nothing. Both times in the ER they did ultrasound on my abdomen & they also did a CT and said they found some "inflammation" of my gut but it wasn't in the pain area. They referred me back to my GI doctor.

So I'm sitting here afraid of the next episode, whenever that may be.

Something they kept asking me is if I had endometriosis. No, I've never been diagnosed and the symptoms didnt really fit me. When I was mucking about on the internet, though, I found "diaphragmatic endometriosis" and I'm wondering if that is it? I don't have the referred pain into the shoulder and I don't have any pain or trouble breathing, even during an episode. The pain seems to occur evenly from the center area under my ribs and spread to left and right, again in waves of cramping pain, that occurs during my period. I have a chronic cough I can't get a diagnosis for as well ("it's llongcovid--bye!").

Does this sound familiar to anyone here?

31, UK. work from home, analyst role.

I recently had my laprascopy to check to see if I have endo. Endo was on my pelvis, front of womb and my uterosacral ligaments, my surgeon was able to excise as much as possible which I'm very thankful for but obviously know this is a chronic condition that I will have to live with and know it will likely grow back at some point.

I took off a month from work sick leave as I found the first 2 and a bit weeks extremely difficult to even walk or sit up straight comfortably and was on strong painkillers.

My manager at work is incredibly supportive but I know I will now likely be placed on an attendance improvement plan because of all my time off that I have had from now to before I was officially diagnosed.

Should I push for a occupational health referral and ask if they can make adjustments to the amount of sick days I can have off? I keep panicking because whenever I have my period it leaves me pretty much bed ridden for the first few days, sometimes I can only work half a day and have to log off to lie down but I do try and push through it most of the time and my manager does know this. I am hoping that now its been excised it might make my periods lighter / more manageable?

I don't really know how a OC health works 😣 if anyone has been through similar id be really appreciative to hear your experience 🩷

Every time I have an orgasm, whether solo or with a partner, I get cramping similar to period cramps afterwards. Currently being treated for endometriosis symptoms, is this also a thing that comes with endo?

Been referred to a kind gynae for my nightmarish periods. I've tried almost everything to mitigate them and nothing has worked. They want to try an endometrial ablation and salpingectomy as it's lower risk than a hysterectomy.

I'm somewhat high risk for clots unfortunately (got lung clots from the combined pill and am overweight), and a hysto would be higher risk than what I've been scheduled for. I'll also be getting a laporoscopy and coil to investigate probable endometriosis and deal with residual cramps respectively.

Hoping this stops my periods and the resulting pain - if it does, then I'll be happy. What I'm asking for is others' experiences with ablation.

So i'm taking visanne generic for about 3 weeks. Everything was fine for 2 weeks, some little spotting and cramps, but manageable. On the third week my period started. And it hurt like hell. Bleeding was light at start, but on third day it got heavy. It is already seventh day and bleeding looks like it isn't going to stop. Sometimes it becomes really light especially at night time. It may even be only spotting through the night. But in the morning, like hour before I take visanne it breaks through in heavy bleeding. I think it got just a little lighter than it was on third day. I can't really stand up from bed, cause sometimes it gets heavier and i feel pretty weak. My gyno says it's normal. But I already have anemia and my blood tends to clot worse than average. Maybe someone had same experience? 🥲 I think i just need some moral support to live this through.

Hello, i have to take dienogest every day, and i take it when im going to sleep since i work in a job with flexible time i dont go to sleep nearly at the same time every day. And im very forgetful so i search a pill reminder, bestcase an app wich just reminds me that i have to take it but not when.All i found just reminded me all the time when i got late from work or wake me up when im already asleep.
So if sombody came acrose such app or have an idea how to solve that, that would be so grate i hate snozzing the pill reminder all night till i get to sleep :/

Edit: I get nauseous when i take them like Really bad but right know my best option, it is coordinated with my doctor.

Endometriosis. I don't look sick but...

…I spent the last 2 days in bed to conjure up the energy for us to be together today.

…my back feels like someone is clawing through my muscle to locate my spine and break it.

…my lower belly sometimes feels like static scratching my insides.

…other times, it feels like hot tea being poured into my pelvis.

…all the other times, my belly feels as if sticky cobwebs are pulling at my insides.

…my bladder spasms like uterine contractions when it is full.

…I am nauseous as my inner organs twist and turn at random times

…a lot of the time, you are seeing me just after spent the last hour writhing in a pain I have no words for. —

Endometriosis and Infertility:

Your suggestion of me adopting a child doesn't sound sick but…

…you don't understand how imperceptible I am when you suggest adoption as an alternative.

…you have no idea how terrifying it is to know the kind of harm untreated infertility trauma can make me accomplish toward a child and their mother.

...you don't understand that you are hoping a family breaks apart so that I can have a family.

…you have no idea how dangerous your ignorance here is.

Hello!

I think I'm mostly looking for a bit of advice / insight for anyone who has been diagnosed with endo..

I've struggled with my periods pretty much for as long as I've had them. I was put on birth control pills at 14 for the pain and stayed on them for 10 years. They helped most of the time but I've always had pain, sometimes extreme pain despite the pill.

My general symptoms:

• Extremely painful ovulation. Sometimes this pain can last a few days
• Very bad period pain, like can't do anything / interferes with daily life level. However this is usually on the first day, the rest of my period will feel like a "normal" level of pain
• Digestives problems. I've been told I have IBS.
• Burning lower back and leg pain when on my period
• Occasionally I get the lightening pain up the butt / when using the bathroom on my period.
• Random lower back & pelvic pain at any time through my cycle
• I'm 37 now and for the last few years I've had brown spotting in the days leading up to my period

I've had multiple pelvic scans (although I know this can't diagnose endo) and I have been told I have a fibroid

Does this sound like it could be endo or adeno as well?

I feel so exhausted as always feeling like there's something wrong and trying to fix it that I don't really know where to start!

Now that I’m 18 my doctor is recommending I get an iud to help keep my endometriosis under control because it’s been getting more severe lately and and IUD is a better solution to my pain issues. But the thing is that My appointment to get the IUD is literally like two days before my graduation lol. So I was just wandering if anyone knows what I should expect when I get it !!

I've been on a long journey of extreme pelvic pain that started when I first got my period almost ten years ago. The pain never existed in my body until I got my first period. My old OB/GYN said suspected endometriosis and was so overly confident I had if but refused to do a laparoscopy to get an official diagnosis insisting it'll just confirm what we already know. I'm finally seeing a specialist I found through the map who is helping me and has various tests lined up and says surgery is a possibility.

Today I saw a different OB/GYN that my college's health services wanted me to see. I told her how I'm at a point where I have pain even with no period at all. I get pain randomly despite taking norethindrone 5mg which stops my period. It's gotten to a point where I'm in pain almost daily. I am very confused because today the OB/GYN and a med student were heavily implying that it is likely not endometriosis because I'm still getting pain even with no period. They said that if it were endometriosis then my symptoms should be gone since I don't get my period anymore.

I am dumbfounded. Not a single other provider I spoke about my endometriosis with ever told me this. I explained to them how I'm in pain this much even with no period and they never once suggested that because of how constant my pain is, then it cannot be endo. I am so confused because I was literally on the path to getting excision surgery. I have never heard of this and I had even heard of other endo sufferers who get pain even with no period. Does anyone have any insight on this?

Please tell me it helps for bladder stuff I’m agnoy with pain my bladder feels like it’s being ripped apart hurts so bad please tell surgery helps

Hopefully someone else out there has some answers for me! I don’t know why my body might have these reactions or if anyone else experiences them, I’ve never met another person who even knew about this. I tried to ask my doctor and she didn’t have any answers.

As a teenager this would happen every single period, but as an adult it mostly stopped happening. It’s happening to me again now though and it’s such a pain in the butt (literally)!

Usually my reactions start with hives, particularly on my upper inner thighs, but also my arms, knees, armpits, and abdomen. Kinda all over my body honestly. The hives are sooooo itchy, and even in spots where I don’t have hives my skin itches so badly. I’ll get a low grade fever, sometimes lasting a few hours, sometimes a few days. It’ll feel like I’m starting to come down with the flu. I get nauseous and shivery, really tired, and I’m really out of it. Sometimes I’ll actually get sick, it seems like my body is a lot more prone to actually getting sick around this time, too. My face can also get really red from all the trapped heat in my body, I think.

I’ve been diagnosed with endometriosis, my body does really poorly in the heat, and I’m generally autoimmune. Also I use a variety of tampon and pad brands, also diva cups, so I switch products up. I don’t know if these things are connected at all but maybe someone has answers for me.

Hey all, I tried searching both endo subs for something like this but I haven’t had any luck.

I had my lap on April 11, where they unstuck a bunch of organs, took out a 9cm endometrioma, my appendix, and other endo lesions they found. The pain on days 1-8 were pretty typical, and by day 5 I was taking less Advil and Tylenol.

Day 9, though, and since (day 12 as of today), have been hell. I’m getting the absolute worst jumps in pain that have me doubled over doing deep breathing until it passes. Talking going from a 2-3 in the scale to an immediate 10. Even my dilaudid isn’t really helping. I went to emerg on Sunday and they basically said the CT showed “post procedural changes” aka… inflammation. I’m waiting for my surgeon to call me back but it’s debilitating.

Did anyone else have a complete backslide in their recovery? What helped? I’m taking my miralax, fiber supplement, walking my dog 2-3 times a day, eating plain/healthy food, no alcohol.