I am beyond depressed. I can’t do ANYTHING, eat and I’m in agony, stand up too long and it hurts so bad, I can’t even enjoy peeing?! Everything hurts all the time to the point that I’m in pain in all my dreams and it feels like it’s never going to stop.

Not only am I constantly in pain but because of the medication I’m on I don’t get my period anymore which to some sounds like heaven I’m sure, but to me it’s just another thing making me crazy because now I have no concrete proof that this is real anymore. I feel like it’s all in my head and I’m going crazy like I’ve made everything up and none of my friends sympathise at all because they think I should just be grateful that I don’t get periods like they do.

I’m now so tired all the time that I can’t do anything unless I literally have no physical choice. My waking hours are spent either resting, taking pills, working, going to college or looking after my newborn sibling which means I’m actually incredibly behind on schoolwork because I haven’t got a free moment to do it because I haven’t got the energy to do ANYTHING, I barely even eat anymore because I can’t get out of bed and when I do it’s not much because the endo pain makes me throw up.

None of my teachers understand, I’m being threatened with disciplinary action at school because I’ve now gotten to a point where I’m so behind that I can’t possibly catch up. I have tried setting time aside like a full day to just get shit done but when those days arrived I’m so tired I actually cannot even move because I have to work twice as hard so that those days will be free for me. I’m so lost and trapped and I can’t even escape it in my sleep because now it’s in ALL my dreams. My girlfriend is so sweet but I can tell it’s wearing on her too because I just can’t do anything, I’m completely devoid of energy or happiness or life and I just feel like I’m dying all the time

i am 33, trying for conceive for 3 years, had 1 pregnancy that resulted in miscarriage last year, and have been unsuccessful with letrozol. i recently had a laparoscopy and the doctor said she treated “some areas of endometriosis”. i have been asked to pause ttc for 1 cycle and am currently on my period.

has anyone had the same experience? did you get pregnant naturally? tell me anything!

They fully believe I have endometriosis. However, they believe my mindset is what's making things worse. I should see the pain in a new way, "it hurts but it's not going to kill me" is one of the ways they've suggested.

While I understand mindset does play a part in wellbeing, I just find some of this really patronising. It's hard to think to "reset" the way I'm thinking when I feel like I've got a potato peeler cutting into my womb and hot rods shoved into my back and legs.

My partner is a male and goes to counselling for his own reasons but he does speak about me and how to better understand what I'm going through as he cannot relate. Yet today I had to hear "it's all in your head" from his family once again.

Curious to know if there is anyone else here diagnosed with both endo and diverticulosis?

How did you manage your symptoms? What was your diet like?

Does anyone else have problems with sweating all the damn time? Unless I’m just hanging around on the couch it starts up. I can get up start doing the dishes and go to vacuum and BAM scalp sweating, under breaths sweating, neck, back etc. If I go out in public (on beta blockers so I know it’s not anxiety related) here it goes! I can never enjoy walking around anywhere casually because I become a sweaty miserable mess. It’s seriously impacting my quality of life, even in 60 degree weather in shorts and a loose t shirt all I do it sweat.

Hi I wanted to try consuming ginger , mostly for digestive issues but also saw it's an anti inflammatory.

Has anyone else tried it ? If so what method ? I bought some fresh ginger from the store and cut up half of one , boiled it for tea. It taste good but im wondering how others go about using it ?

Thank you

Ok… so I had a baby (through IUI) 16 months ago!!! And my husband and I are ready to try (soon) for another! But when I went to the fertility clinic a few years ago, they said I likely had endometriosis (titled cervix, painful periods, and infertility)… but now after my pregnancy my periods have changed! No more spotting days before my period begins, they aren’t painful at all anymore, and they’re a little bit longer (before they were 3 days). Has this happened before with anyone with endometriosis and were you able to get pregnant a lot easier after a successful pregnancy, or did you have to still go through the fertility clinic?

i'm scheduled to have diagnostic and possible excision surgery in a week. I'm dreading being out of action, especially in the run up to Christmas. Can anybody recommend any post-surgery pick-me-ups? Is there anything that worked to physically and mentally get you through the healing process?

Thank you for any tips

Hello, I am 17 (ftm) and I am getting a laparoscopy for suspected (but likely) endo. I will be getting this surgery in a month from tomorrow. i unfortunately have to drive four hours (my mom + grandma will be driving and helping me) to get the surgery due to a lack of excision expertise in my area. the plan is that we drive the day before, get the surgery the next day, and leave the day after. i know i will be in a world of pain when i drive back. I am planning on purchasing a power bank for my heating pad, and bringing my cane for when i need to move around, for reference. if anyone has any advice or suggestions to make the car ride more comfortable, please let me know.

So I suspect I have endo because I had some symptoms in my early years (but now i do not) and by my early years i mean from 12-19. I had painful periods(I feel they were painful but not the point it effects my life but definitely way way painful than what I have right now) a really heavy period -breast pain- lightning pain in my booty that stayed for seconds and my period always started with 2 days of only brown discharge All these symptoms I do not have right now im 24 almost 25 but i have pcos(diagnosed at 20) I have Regular periods right now and no pain during period or only really mild pain that doesn't effect my life at all. the symptoms I have right now are cramping week before my period(mild cramping, not bad at all) , and sometimes I get a twitching sensation in my uterus couple of times a month. And My period start with brown discharge that at the end of the day turn into a normal flow. Also my period became lighter in amount (not days) since I entered my 20s

Im in a country that currently in an active war and I do not have medical access. So please help me Can this be endo?

English is not my native language so sorry for any mistakes

Hello everyone so my wife recently got diagnosed with endometriosis and of course there's a lot to take in a lot of questions and research between us both to do and in part of that research asking people who've gone through everything and have had that experience is to me at least the best source of information so if you don't mind taking a moment to answer a very curious and somewhat worried husbands questions it would be greatly greatly appreciated. My questions mostly revolve around what to do now after the the diagnosis is surgery the best option? The docs have tried a lot already like pain management and birth control and now surgery is on the cards, so what sort of questions do we ask during appointments and how can I the person who doesn't have it help to make my wifes life easier until something is done through the doctors? And how to get doctors to talk to my wife during appointments and not to me which is frustrating for both of us and she gets bad swelling so any help with that would be awesome too! And one last thing is I've heard there's supplements that can help with either swelling or pain and was wondering what people's experiences are and what you've tried and found to have worked? We live in the UK so if anyone can share experiences in the UK that would be brilliant but any help and advice from anyone would be best case. I hope you all understand my naivety and any help is honestly greatly appreciated just tryna figure this out and do my best to help and learn.

I've been using IUDs for years. The reason was that my cycles have always been painful. So painful that I was considering injections (and I have a massive fear of them) until my doctor told me that makes periods worse and told me about IUD.

Until April, it's worked. No pain. Then April came. Awful pain in my pelvis and when I pooped. Was afraid to go to the toilet. This happened until June. I still get the pain in my pelvis but I noticed another change, I don't get the pain if I aactually bleed. Only if I'm due my cycle but it doesn't come.

I'm not diagnosed but under investigation. Could it be Endo?

Hello! I (25F) have known I have had endometriosis since I was 17 after having my first laparoscopy. Since September of 2020 I have been taking Norethindrone (10 mg) as well as continuous birth control to stop my period. I struggled with a terrible period and pain and now I haven’t had my period in over 4 years. Has anyone else gone this route to help with period pain and endometriosis? I have gained a lot of weight since taking it (and also change in lifestyle unfortunately) and my doctor said it’s okay to have been on norethindrone for this long but I am scared this is why I am unable to lose weight. I’m thinking of meeting with a specialist rather than only my gynecologist. Has anyone else struggled with this?

So I’ve been waking up everyday incredibly nauseous and having lots of pain in my pelvic area for a few weeks now. I’m not sure at what point I should be concerned. I also can’t do a lot of physical activity stuff I will end up in a lot of pain. I did have a surgery for endometriosis and it was pulling my intestines forward so idk if it’s trying to do that again but I’m concerned.

I had my surgery on 11/29 for hysterectomy and removal of any endometriosis.

They found my left ovary fused to my uterus and that my uterus was also fused to my bowel.

I can’t believe they found it and that it was so much worse than I thought.

I got put on a new birth control which was great at first, I didn't bleed for a whole month and it was a good month I was able to do so much. I'm currently awaiting endo surgery. Now it's like my body is making up for lost time. I've bled for a month, maybe with a day or two that I didn't. It's not even a large amount, just constant every day. How can you explain this exhaustion to anyone. My partner and I haven't been intimate in weeks even though I want to I'm in a lot of pain. I'm almost in tears at the though of going into my short staffed work tomorrow (even though i really love my job). One of my two days off and I slept through most of today. Getting by on caffeine. Anyway, i wouldn't wish this on anyone.

I recently had my second laparoscopy among (other things that are too long to type lol) surgery! My doctor told me that I would begin ovulating about 2 weeks post op and that my cycle would essentially start over. But I just started my period today (Dec 1st) . I had surgery on the 13th of November. For those that have had the surgery- when did you start your period? I’m trying to have a baby and so I want to track my ovulation. According to my doctor I should’ve start my period the 10th of December.

Hey guys. I literally had laparoscopic surgery in July. I’ve felt pretty good since but for the last few weeks my back and lower stomach has been killing me again. It’s been so bad I actually took some of my old painkillers from the recovery period. I’m worried that my symptoms are back for good :/ I’m hoping this is just some sort of fluke. But the pains like the same. It’s in my hips too and shooting down my legs.

How long after surgery when/did your symptoms return?

I had my second lap around three weeks ago and I had sex for the first time last night. I’m experiencing really bad cramping now. Did anyone else experience this after their first time post lap?

This feels like such an odd symptom but it’s very consistent at this point. A few days before and during my period I experience horrible nightmares and sleep paralysis every time I fall asleep. I also can’t stay asleep for more than 3 hours. At first I thought it was the medication I was on but I’ve experimented with different combos of it and not taking anything at all and the problem didn’t change or go away. It’s at the point where I dread falling asleep because I always wake up in a panic, still feeling exhausted. I’ve talked to my doc who highly suspects I have endo and adeno but she has no idea what’s causing this as she’s never heard of this symptom before. I also haven’t been able to find much research on it.

Has anyone else experienced this?? I feel like I’m going crazy and the lack of good sleep makes all of my other symptoms worse.

Anyone else have horrible pain during their first period after surgery? I’m two weeks post op and haven’t stopped bleeding since surgery, but the bleeding got significantly heavier yesterday (should be starting my period around this time so not abnormal) but my cramps are horrible. The cramps aren’t in the same location that I felt most of my pain pre surgery, but still pretty significant. Just wanted to see if this is normal, other than this, my daily pain has gone away.

Hi all! I went back to my same gyno office this past week for a check-up and had a new (younger) doc. My ultrasounds showed the same endometriomas on one of my ovaries that hadn't grown (yay!). I was joking with the ultrasound texh that I was used to this, and she commented something like "yes, but you shouldn't be." I'm only 23 and deep down I know this, but having it reassured made it real.

My doc this time told me things my last one didn't.She referred to my endo as "advanced disease" and talked about low infertility and family plans. This really wrecked my day at the time - I knew endo was tough, but after working with kids for a few months I finally felt like I'd like to have one of my own. It felt like a huge slap in the face. I was in pain from the ultrasound already and was just crying on and off the entire day after.

Since the appointment I've been trying to be more honest with myself about the pain and not push through it like normal. I'm so frustrated; I'm so many good things, and it all seems to crumble when I'm faced with my body fighting against me nearly every day.

Thank you for reading <3 it's been really tough this past week. I was curious if any of y'all had two different doctors that took the severity of your endo differently? Do I seek a third opinion? Is it worth it?

Is anyone else single and in their 30s for the first time ? I’m about to turn 32 and fear I will have to freeze my eggs if I want a chance at having kids (but like who the fuck has that kind of $??). I had surgery to remove the stage 4 endo this past spring. I’m happy to be single again because I know it’s a time of growth but my fears of meeting someone I want to have a baby with in time with my biological clock have been weighing on me. I only got my diagnosis this past February so I never knew how important it was that I don’t waste ANY time dating someone who I have doubts about despite the growth I was seeing.

How did you treat your endo prior to FET that was successful? I’m open to anything.

1st FET: no treatment of endo: ended in live birth 2nd FET: removed endo during c section, no additional treatment of endo: miscarriage

3 FET: plan to treat endo for 2 weeks with letrozole and Lupron

Wanting to see what others have done that was successful

I also want to share I am state “2-4” bc it was discovered during an emergency c section. My OB diagnosed me as stage 2. My IVF dr read the records later and diagnosed me with stage 4

After 10 years I was finally diagnosed with stage 4 silent endo. Feels like it’s not real bc I have normal periods, every 28 days, no pain etc. I have 2 live children, 3 miscarriages and am currently on my 3rd round of IVF so I guess it makes sense but silent endo? So strange to me. Anyone else

Anyone had the experience of their periods getting longer after finding out they have endo? I have endo that was diagnosed about a year ago. Since then, I have had periods that are increasingly painful and heavy, but the length of my period hasn’t changed until the most recent 2-3 months. The last few periods, I’ve bled for 6-7 days instead of my usual 3-4 days, and the time that passes between them is about a week or two longer than it used to be. I was getting my period about every 28 days, and now it’s closer to 35-40 days.

Has anyone else had this experience? Did they ever go back to their normal length? I’m struggling to have bleed and cramps for this many days in a row…

I was put on Evorel a couple of weeks ago and this morning I’ve noticed some “old friends” returning. I’ve been pretty much symptom-free since my hysterectomy for severe endo 14 years ago but I’m walking round the supermarket this morning and I’m thinking hmmm not felt that for a while (by which I mean pain in areas I know I had endometriosis deposits, I feel like that pain you get in your bum from pouch of Douglas/rectal endo is pretty unmistakable) but is 2 weeks after starting hrt too early to notice anything? Not sure if my mind’s just playing tricks on me. I’m 46 and deffo at least perimenopausal. Thank you.

Hi! I was recently diagnosed with suspected stage 4 endometriosis/adenomyosis from an endo specialist. I had an MRI done, and the results said "No signs of endo, fibroid present on the posterior of the uterus". However, the endo specialist/surgeon interpreted the MRI scans differently. She thinks I have adenomyosis in my back uterine wall, pulling my uterus back toward my colon. She also thinks I may have a frozen pelvis. I am 29 and hoping to conceive.

I am honestly devastated and overwhelmed. Any positive experiences are so welcome! I plan to have a laparoscopy surgery in February. Unfortunately, mine will also be a myomectomy because of the surgeon having to go into my uterine wall. This means I will have to wait 6-12 months to TTC because the uterus will need time to heal. I thought about getting a second opinion, but this surgeon seems amazing and is a huge advocate for women's health.

TLDR: 29 years old. MRI says fibroid, endo specialist says adenomyosis and most likely endometriosis. wants to do a laparoscopic myomectomy. I just want a baby <3 any positive experiences or feedback is helpful. right now, reading about infertility is overwhelming.

Thought this might be a funny read for someone who needs it

Hello every body! At the moment I am desperate. I have Endo and Adenomyosis. Until one year ago I only had period cramps and the other typical symptoms the first day of my period. Now I maybe have one week in the month where I don't have severe pain in my lower abdomen. The problem is: i can't tolerate hormonal birth control. I have tried so many different forms. But everytime it's the same: migraines, severe anxiety, depression and insomnia to the point where I can't get a sinfle minute of sleep in the night. Hormones are driving me crazy! But it's the only thing that is known to help. I have also tried alternative things like acupuncture and chinese medicine. I am also on LDN for my other condition Ehlers Danlos Syndrome...this condition is the reason why an operation is not an option..because with Ehlers Danlos operations have a much higher risk of going wrong and scar tissie doesnt heal that well... I was also recommended the hormonal iud but I am scared, because even though it's said to be less systemic and have lower doses of hormones..since i am that sensitive to hormones and because of many bad experiences of women who are similarly senstive and had a very bad reaction to it. I am scared I get the IUD and have my typical hormonal symptoms and the doctor refuses to take it out too soon. I dont know what to do. Has anybody tried anything else that has worked and wants to share? I would be so thankful!