My gyno put me on Orilissa 150mg since she found endo on my exploratory lap and I'm waiting for my body to adjust (it's been like 4 days and I started my period the same day I started taking it) barely helps with the pain hell the first day was a 8/10 pain wise but forced myself to go into work (can't afford to lose my job because of medical bills)..and almost passed out a few times, is this normal starting this medicine?

i got my lap three days ago. i know…barely any time. but i am through the roof horny. i am definitely not ready for penetrative sex, but i gotta at least masturbate or do something with my bf. any advice?

…presumably, anyway. Bloodwork is normal, waiting for ultrasound results. Was at dinner with my husband when I got up to pee and all of a sudden the most excruciating pain, butt lightning, etc. couldn’t sit, couldn’t stand, couldn’t walk to the car.

Get to the ER and I’m crying from the pain so they gave me oral pain meds and hydro morphine. Still having pain when I press down or do the act of standing/sitting but once I’m in a position I’m okay. My ultrasound tech has endo and she was really sweet and reassuring me that even if it’s “just” endo, that coming to ER is a signal to my gyn that my surgery needs to happen sooner.

I hate this stupid disease.

I had a laparoscopic cystectomy 5 weeks ago and the surgeon also removed some endo. I didn’t have any bleeding until 2 weeks post op and then got my period early at 3 weeks post op. Since my period ended I’ve still been having a lot of dark spotting along with passing stuff that looks like tissue. No pain or anything. My doctor just said to keep an eye on it. For those who have had a lap - how long did your bleeding last? Did you pass tissue?

I got my period 10 days earlier than expected and I've been on the same birth control for 7 years, this never happened before and I am kinda freaked out. Has this happened to anyone else? I am also getting pretty bad back pain all on one side too

Just wanted to share some hope, I know I would’ve wanted it this time last year.

I spent around 2 years practically bed bound starting from when I was 19 years old. It started with severe sciatica, which progressed to gastro issues, inability to pee, constant nausea, hip pain, etc etc etc. I ended up being able to walk with crutches on the good days, and on the bad days I was unable to even move my neck or my entire body would seize up with indescribable pain. I went to every doctor, physiotherapist, gynaecologist and gastroenterologist. I’d cried in more doctors offices than I can count, sat curled up in emergency room chairs for hours, had to drop out of uni and was honestly considering suicide. It took a year and a half for someone to mention the word endometriosis to me, and I know that is minuscule compared to the majority of women’s stories. I researched it and I clung onto it.

Half the time I didn’t even believe myself, I’d leave every appointment that I’d paid all my savings to get to and go into the bathroom and cry thinking that I’m faking the whole thing, that I’m wasting all this money for something I’m making up. I convinced my family to take out a 10 thousand pound loan to get surgery that I would pay them back for, and throughout the entire process I knew that if it showed nothing, then I would pay my family back and then just end it. That was the mental space that I was in.

3 days before my surgery I got a phone-call from the NHS telling me there’s been a cancellation and they are able to fund my entire surgery. That was the first hope I’d had in so long, and something told me that things were going to be okay. I woke up from surgery being told that they’d found stage 1 endometriosis ‘behind my womb’, and definite signs of adenomyosis. I was slightly confused, because although I’d heard that the stage doesn’t determine your pain, I had internalised that, because of the level of my pain, either I was riddled, or it was nothing. As I recovered, I discovered that within a week, I could walk without back pain for the first time in 2 years. I could bend down and the only pain I felt was the pulling on my stitches. I could pee and not have to lay down for an hour afterward. in my follow up appointment, I found out that the endo I had was fused heavily on the ligaments connecting my sciatic nerve to my womb, which was also flaring up the nerves all over my digestive system, and although it was staged as 1, the nerve placement was causing debilitating pain, which cleared things up a lot for me.

4 months on and I haven’t cramped once. I haven’t had any sciatica flare-ups, I’ve stopped hesitating when I stand up, expecting pain. I don’t fear periods anymore. I’m able to go out and sit in uncomfortable chairs and not be hyper aware of the nearest bathroom. I’m back at university, and although the transition has been difficult, I think I’m getting back on track. I know the chances of relapse, and I’m honestly scared of it all the time, but the fact that I’ve gotten this long with no pain has given me hope that things can be better even if for a little while, and even if it gets bad again, I’ll manage it, and I’ll sort it out.

Hi, I’ve been working on writing my story about my life with endometriosis. This is very long, but I think it opens up a side of Endo that people don’t always hear. I find it difficult to talk about because it’s my reproductive system… it’s not an easy topic to talk about openly!

Growing up, every period I had was brutal. I was in severe pain. I could not get up out of bed, I couldn’t walk to the bathroom without being helped, I couldn’t stand up straight for the first 3-4 days I got my period. I thought this was normal initially. I missed school every month when I got my period because I could not get up and walk. I would take pain medication to make the pain lessen (the strong stuff) and I would still feel the pain. I was constipated all the time. I was extremely low in iron. My stomach was in constant knots and I had to watch everything I ate. It got so bad, I would barely eat meals. I’d just spend the first few days of my period laying in a ball at home wishing it was over.

This was my life, ages 13-18. This was normal to me. I would hope that my cycle didn’t start on an important day so nobody would see me in pain. (And sometimes it did. I once had a cheer competition the day it started and I remember taking so much medication just to make it through that day). I thought everyone went through “period pain” and cramping. I just thought I had it worse than others.

Endometriosis is common in my family. Uterine abnormalities are also common in my family. But, it wasn’t until I was 18, that I was finally diagnosed endometriosis.

I was 2 months into my freshman year at college when I started spotting, and it did not stop. I was also on birth control so this was extremely abnormal. I called my gynecologist and she scheduled surgery to try to determine what was going on down there.

I had surgery in October 2015. The doctor discovered cysts, endometriosis, and that I had a septum that separated my uterus, cervix, and vagina! After the surgery, I was put on menopause medication to balance out my hormones. The goal was also for me to not have a period, so no endometrial follicles would grow. After 5 months of Luperon shots to put me in menopause, i weighed 50 pounds more than I use to, and I was a completely different person.

I think it’s worth noting that I have two, yes two, cervix, two vaginas, AND two uteri (medical term is Uterine Didelphys). Who would of thought I’d be so lucky. I have a septum that splits my female organs in half. Fast forward 9 years later, and I had surgery to remove the septum in my vagina. The septum separating my uterus is strong, and is preventing the top of my uterus from collapsing. Therefore, it cannot be removed. This does increase my chances to have issues if/when I become pregnant. But there are lots of success stories in women who have this and are still able to carry a healthy baby.

After the Luperon, I was placed on birth control - 10mg of progestin. That’s about how much doctors gave women in the when birth control first became a thing. I took 10mg daily for 2 years. Then I dropped to 5mg. It took me a long time to get to 5mg a day. And then finally I dropped down to 2.5mg per day. I was on this medication for 9 years.

I hid this part of my life for a long time. I never told anyone how bad it really was. My friends knew about some of it, but they never knew the full story. My mom is the only one who really understood how terrible this was. She did everything to try to get me to the best doctors and take care of me while I was going through it. (And Gold Bless her because without her research and asking questions, I never would’ve found my gynecologist who did my procedure).

I have so many memories of sitting at the ER. Having millions of Ultra-Sounds, MRIs, CT Scans… to check for cysts. And when they found nothing on the scans… it was the worst feeling ever. I saw so many different doctors. Trying new medications. I was depressed and just pushing through everything because I was raised to never give up. I always put on my shield pushed through the pain and pretended like I was okay.

It’s still a lot on my body and mental health. It was very bitter sweet being on birth control. I couldn’t lose weight, and people constantly reminded me of how skinny I used to be, and how I looked “thicker” now. Those words ate me alive. But I knew that I would rather be happy 30-40 pounds heavier than have to deal with the pain my periods caused me. In truth, I was honestly happy because I did not have to worry about endometriosis when I was on birth control. The depression, the lack of emotions, and fog that birth control gave me was so much better than the pain I felt.

I stopped birth control after 9 years because I didn’t want to be on it. It was starting to take a toll on my health. I truly thought that I would not start bleeding for at least 6-7 months. (Based on information I was reading and asking other friends who were on BC for a long time). I got my first period about a month after I stopped taking it… and it’s still just as bad as when I was a kid. I pray every month that it starts on a weekend or a day I work from home so I can medicate myself and get through the pain without missing work.

I’m currently battling mentally and physically again. I lost 30 pounds after I stopped birth control. I am no longer in a fog and I can feel my emotions. Feeling emotions is the most beautiful thing. I cry, I get angry, I can feel joy and happiness and not just pretend I’m faking it. It’s unreal. But it’s also not easy!! I haven’t felt anything to this extent since i was a teenager. It’s like learning how to deal with emotions all over again. But the pain… it’s back and it’s the same as before. I cry because it’s not fair. The pain is miserable. I think back to my teenage years and I cry for the girl who I was. I can barely handle this pain as an adult.

As much as I’d love to be normal, this is my story. This is my life. And this is my choice. I don’t know where I’d be if I didn’t have such an amazing gynecologist when I was 18. She’s truly saved my life and allowed me to live as normal as possible for the last 9 years.

Now that I’m an adult, I’ve moved out of my hometown and I’m struggling so hard to find a new doctor who understands me. The doctor who did my septum removal was PHENOMENAL. But he’s a fertility doctor. Once I’m pregnant, I’ll go back to a OB/Gyno who has little experience dealing with my situation.

If you made it this far, thank you. Thank you for reading my story. It’s so unique and I don’t really know where else to share this. Hopefully it reaches someone who may be going through something similar.

I’m 44 and I’ve had endo for 30+ (20+ years diagnosed). I’ve also been active in the endo online community back when the internet was a new thing. One thing I have noticed is that when women reach 50 many seem to improve. Please note I’m NOT saying all. I know many of you will gladly cite yourself or somebody else, saying that isn’t true. I know…I’ve heard of 80 year olds being diagnosed with this disease. I’m talking in VERY general term. Has anyone else noticed this?

Long story short.. I had my monthly literally the ENTIRE month of Sept after having my ovary and tube out. I had been taking Agestin and was taking it religiously. By October I was spotting still so my OBGYN said to stop it for 5 days and I (stupidly) assumed it would be in my system still. I did my thing with my partner on one of the 5 days I was off of it. Apparently (and my OB confirmed it) my birth control really doesn’t prevent pregnancy. I was floored… what is the point of calling it birth control if it doesn’t control birth. So anyways.. I totally skipped my actual period in the month of October at the end of the month. Day before yesterday I started to spot but it was… weird. Pinkish red and lasted 2-3 hrs just spots here and there. Since my period was OFFICALLY late and I only spotted I took a pregnancy test. It was faintly positive. My PCP drew labs and they were negative. My OB said labs were done too soon. Right now my only symptoms are feeling bloated, my breasts hurt off and on, I’m between feeling nausea and not, and my back was hurting two days ago but not so much now, I’m also constipated which isn’t typical for me. So now.. I’m waiting to hear back from my OB to see what she wants to do and I’m SCARED. I only have one ovary and one tube. I don’t want to risk losing that one too. I’m so confused by the whole situation completely and I just want to lay down in the middle of a road lol. I’ll be okay if I am pregnant, but I will be doing things 100% alone. After I told my partner what was happening he promptly broke up with me and said I cheated on him 🙃 (which I did not but.. whatever dude.. think what you want I guess). I just don’t have the energy or patience to chase a man.

TLDR: Could be pregnant, my cycles are off and my obgyn says that even though the lab is negative my positive pregnancy test means I’m likely pregnant. Labs were done too early? Guy I was with doesn’t want anything to do with me now and I’m extremely upset about it. Symptoms I have are bloating, boobs hurt, back pain that went away and spotting two days ago that’s gone. I feel weirdly full in my pelvis. Waiting on OB to send me a message back about what to do next.

Hi! So I am 22F, diagnosed with stage three during my lap last September where they were able to excise enough to bring me back to stage one.

My main symptom i experienced from Endo and the subsequent pelvic floor dysfunction is VERY painful bladder/urethral symptoms, basically it was like I was getting a severe UTI every week or so, every time I had sex, drank alcohol, caffeine, etc.

Through surgery, IUD removal, medication adjustment , and about 6 months of pelvic floor PT I have gotten to a point where I am very rarely getting these flares and I am SO relieved.

However, I am still at a point (it seems kind of like a plateau) where usually if I drink caffeine, alcohol, get a little dehydrated, or have sex I'll be kind of sore for a day or two after. This is nothing severe, just some discomfort about my bladder/urethra area that kind of feels like the beginning of a UTI but isn't.

Has anyone else experienced this? Have you been able to make it go away or is this just kind of the way I have to exist now? Don't get me wrong, it is such an improvement from the past few years but I just want to see if anyone else has been through this?

I been on Depo Lupron for 2 years to protect my fertility and prevent extreme bleeding that is difficult to stop. I have stage 1-2 endometriosis. Im 27 with 2 prior pregnancy ( one miscarriage and 1 successful) . I want to eventually go off of Lupron to get my cycles back and starting trying for baby eventually. Has anyone had any success getting pregnant after lupron? How long did it take? Did you need any fertility treatments? Ect..

** not debating if lupron bad or good as it comes with warnings and your body reaction**

Please recommend a female doctor specializing in endometriosis in Cincinnati, Ohio. Ever so grateful!

(I’ve searched online already but looking for doctors who can be vouched for by others.)

I was diagnosed with endo stage 2. Lap done 3 months ago.

Im in pain ALL the time.

Sometimes its muscular, sometimes burning and now it just feels like someone just cut me open with a knife.

The surgeon checked me and has no clue why I’m in pain.

All I read is about surgeries helping women, cyclic pain, pain during periods.

But, HELL, I’m in pain always… People just can’t imagine this.

Doctors don’t want to check me for anything else.

I can’t live like this all my life.

Am I the only one?

What are you, guys, holding up? I’m using tens, vitamins, visanne, pelvic floor therapy, the pain doesn’t stop.

So this might be stupid, and is probably just the result of being told I will be able to have children, but has anyone else had intense baby fever post laparoscopy? I got mine Thursday (11/7) and since then I have been obsessed with watching baby videos and thinking about having children. I know it’s probably also caused by my hormones, since I also started my period that day, but i feel so weird. My bf and I were planning on waiting 5 years, but i want one now!! feel like i’m going crazy

hi everyone! i had my second laparoscopy done on wednesday afternoon, thank goodness! had to fight harder for this procedure because my first lap was only last september, but i was adamant on getting my endo lesions in my diaphragm removed. i know it’s hard enough to find people with confirmed diaphragm endo, so this might be a long shot, but when they were excising the lesions on my diaphragm, they found lesions on my liver, which they ended up burning off. luckily i did not need a chest tube, but ended up staying overnight for observation. has anyone had endo lesions on their liver, or surrounding organs where it’s a bit more rare to find? it threw me for a curveball, but man it feels good to have that pain validated!

Does anyone have experience with seeing doctors at the Endo/Chronic Pelvic Pain Centre at the CC? I requested an appt this week and probably won’t hear back until next week but am wondering what I should expect. I requested Dr Cara King. Thanks!

Hey all, I 26f just recently started 10mg xr Adderall. I’m only on day two and the calmness of the brain is amazing however, it seems to be triggering my GI track. I’m having to pee every 10 or so minutes which is causing my Endo to flare up. Does this go away? I ditched caffeine a year ago because it triggered my Endo and I’m really hoping stimulants won’t have the same effect because I’m always so tired and unmotivated to the point it’s been heavily impacting my life. I feel like I’ll need to increase my dosage but I’m terrified to trigger my Endo all over again when I have finally had it mostly managed this last year. I’m hoping it’s because this medication is new and will just take some getting use to. Tips. Advice is much appreciated.

Hey everyone, fellow endo-girl here. Currently dealing with severe can’t get off the couch fatigue and cramps. I am considering moving back to India to get help with managing my endo and improve my quality of life. For those in India, how do you manage? And what your biggest challenges? Any help/ advice would be super appreciated.

Because of a lot of reasons that feel insignificant now, I didn’t go to the hospital when I started feeling intense pelvic pain. It was pretty much from my waist to my knees and about an 8/10. It went on for four days, peaking at 9/10, I almost passed out twice, could barely walk, and was nauseous from the pain. OTC meds didn’t help, so on day three I called for a shot of toradol from a paramedic to keep going. Didn’t help much, so went to urgent care the next day. They found a 4.5 cm suspected endometrioma on ultrasound that according to the tech was “leaking” and couldn’t tell what the original size had been.

Then I was given another pain shot and a script for 800mg of Motrin and told to follow up with my doctor. I’m lucky that the pain meds are finally working to a point, but I’m at a loss. My follow up isn’t until next Wed but I don’t know what to do with myself until then. Any advice? So far my plan is to rest with the Motrin and keep an eye for any down turn.

Hey everyone, Leading up to my period I tend to have pain in my upper thigh, but this has been worse than ever before.

The whole back of my thigh hurts when I move my leg. Only on one side. Is this normal?

I have anxiety about my health so I go down the webMD rabbit hole a lot and get scared of blood clots (I have a history in my family too, which doesn’t help) :/

Just want to know if anyone else is experiencing this from their period.

I have kinda feel like the opioids I’m prescribed for pain management of my endometriosis and Cysts are giving me insomnia. I’ll try to go to sleep and it almost like if I move in my dream I won’t realize I moved in real life and jolt back awake. Almost like if your napping on a couch with your front faced towards the back of the couch and you get into a dream state, in which you feel like your falling then get snatched from your dream state full of adrenaline and fear bc your felt like your where falling but you where not. I get that but with every move I make in my dream when I’m about to fall completely asleep. It’s not always like this but it’s even worse after I have morphine injected through IV. Anyone else experiencing insomnia on opioids or sleeping habits brought on my endometriosis or pain relievers.

I have a tens machine and I'm desperate to go back to work. I keep having bleeds and ovary pains and back pains. They think it's endo. I'm on codeine and paracetamol. I could really do with some advice on how to manage for now. Also if anyone can think of an anti inflammatory not ibuprofen without lactose in I would absolutely love that.

hi y’all. i used to have a lot of symptoms of endo, i even had an excision scheduled but it ended up getting canceled due to covid years ago and i never rescheduled since my symptoms went away.

symptoms i used to have:

• heavy prolonged bleeding during periods
• lots of clots and debilitating cramps
• pain when going to the bathroom, felt like my organs were being pulled on

i decided to try the keto diet to lose weight (do not do this, keto is not healthy for you unless recommended by a doctor for epilepsy or other conditions) when it was all the rage.

i did lose about 30 pounds and my symptoms were astronomically worse during the period i was doing keto.

i had such bad cramps during my period once that my gyno said i might have had a cyst burst bc of how much pain i was in.

after a few months i decided to stop keto after reading more about it, inevitably gained the weight back, but my endo symptoms completely disappeared after i stopped keto.

my periods and experiences now:

• periods only last 5ish days (used to be 10+)
• no clots, always thin blood
• no cramping whatsoever
• no pain on going to bathroom

has anyone had similar experiences? i’m glad i feel much better now than i ever have, but it’s a mystery to me and idk if it was because of the diet that it ended up getting better or if it was just luck.

lmk your thoughts

tldr; had endo symptoms, tried keto diet, symptoms worsened on diet, stopped, symptoms went away completely.

I have lurked here for a long time but never posted. This page and a handful of IG accounts are what lead me to knowing I had endometriosis and spending years finding a doctor to believe me. I’m so grateful for that.

4 months ago I finally found this doctor and 7 weeks ago I had my first lap surgery which confirmed stage 1 endo which was all removed. I’ve had two menstrual cycles since then and I still live with level 10 debilitating pain, nausea, bloating and GI issues. I’m laying in bed wearing my obi unit and crying with my cat as I write here, but I’m so at a loss of what to do.

I knew surgery wasn’t a guaranteed fix to the pain. The hopeful part of me still thought it may. My doctor recommended Myfembree for pain going forward, but I’ve seen so many horror stories of side effects. I am already prone to depression so I don’t want to risk that, among many other side effects I see (weight gain, hair loss, lack of libido).

What are my options? What are people doing other than Myfembree and hysterectomy (which also doesn’t guarantee healing)? I can’t live like this for the rest of my menstruating life but it doesn’t seem like I have a good alternative.

I'm a teenage girl who has pcos and endo stage 4..has anyone else experienced extreme hairloss..I have to buy a wig it's that bad, also extreme nausea and no appetite?

I am 24 and was just recently diagnosed. Can anyone tell me/give me advice on the best way to navigate this? Should I change my diet/cut anything specific out? Should I stop drinking all together (i just drink socially currently)? Is this a guarantee on difficulty having kids? I apologize if any of these questions are ignorant, this is all new to me. I had been on birth control for over 10 years before this, and my doctor thinks my bc suppressed my symptoms.

I’m finally getting my right ovary yeeted out on Tuesday in addition to excision! The tube on the right side is long gone and that ovary has produced multiple cysts. The left ovary is most likely still in great shape. Most of my endo issues are on my right side. Have any of you had just one ovary removed? I’m 37 and I’m wondering if I’ll have hot flashes or any notable changes from this removal!

I had a lap this week. I’m at my wit’s end with the abdominal distension, pelvic pain, shooting pains, GI issues, migraines, nausea, etc…….

My gyno found a tiny little bit of endo in a place she said was impossible to remove. 🤦🏼‍♀️

She also found an adhesion (she did not believe that was endo). It was folding one of my organs up over itself and sticking to something else.

I’ve never had abdominal surgery before or any significant trauma to that region. Anyone else have this unexplained scar tissue that’s not due to endo?

Gyno removed it, and I’m praying that was the cause of some of my issues, but it’s hard to tell post-op because I’m so swollen still.

I do have a known small fibroid on the back of my uterus, that is likely contributing to some pain in the pelvis. Given its size, I can’t imagine it’s the reason I look 4 months pregnant every day. 😩

It feels like such a waste to have done the lap knowing there was no endo to be treated. Also assuming the scar tissue that was removed will grow back to some degree.

Last question: is it common to wear a belly binder post-lap? I feel like my tummy is falling out all day. Intuitively I want compression there.