Hi everyone, I recently got diagnosed with endo thanks to finally having a lap & since then my mind has been racing. They also found one of my tubes blocked by endo, which I’ll need another surgery to have it removed.

I’m 27 and have always wanted kids, not now, but I do want them one day. My husband and I haven’t started TTC yet, but because to my diagnosis I wonder if it will be better to just start now, or stick to our plan, travel a bit more at the beginning of the year and start in 6 months? What’s everyone else’s experience with this? TIA

I allways get alot of pain yet I havnt been able to get a diagnosis due to the long wait times. So no pain management. The pain gets so so serve I can't take it and ive got no way of helping with it. So could Marijuana really help ?

I had my lap with excision a little less than two years ago and my pain is much better but I'm now having pretty bad pain and stiffness on my right side only that comes and goes. It's like my oblique area is rigid on that side and squishy/normal on the other and no amount of stretching helps. My lower back, pelvis, and inner thigh hurt too. I feel like it's getting worse. Any thoughts on what it is and if it's endo related??

Part of me wants to go see my pcp. I started seeing her after my diagnosis and I like her but I've only seen her for a couple annual checkups. I just don't trust doctors anymore and I get so anxious thinking about starting another never ending fruitless medical journey. I imagine that's a common experience.

Posting on behalf of my gf because she gets overwhelmed:

“I have endometriosis (first surgery in 2021) and was recently diagnosed with PCOS. Lately, I’ve been needing to urgently pee a lot, which isn’t normal for me, and it’s usually when I lay on my side. I’ve also been having more regular endo pain and back cramping (not on my period). On top of that, I’ve been dealing with random dizziness—like it’s constant.

My sister told me to test for a UTI because of the frequent urination, but I didn’t think that was it since I don’t have burning or pain while peeing. Still, the test came back positive for a UTI. I know endo can cause false positives, and I just got off birth control, so now I’m wondering if this pain, urination, and dizziness are from an ovarian cyst due to my hormones or PCOS, or if it’s more endo growth. I’m just struggling, and my next surgery is in January, and I’m nervous since my first one was so tough.

What should I do to treat this? I am really struggling”

She needs some advice because nobody really believes her pain. She took herself off of BC due to the mental strain and she has been a lot happy since being off of it.

This is more of a rant than anything, but I was hoping that someone in this community may be able to empathize because this is such a niche issue.

I received a preliminary diagnosis yesterday from my gynecologist, who told me that I almost certainly have endo, but there’s no definitive way for them to diagnose without doing the laparoscopic surgery. She advised against surgery for now, but recommended if I have increased pain in the next few months.

My symptoms aren’t too bad. I only have pain on my period and occasionally have pain during sex, but about 95% of the time, I’m okay. On my period, I have HORRIBLE pain during and after bowel movements. Sex hasn’t hurt me for years, but now I feel stomach cramps every time I have it. It’s not the end of the world though. I am okay most of the time.

I’ve been on birth control (low dose combination pill) for 11 years now now so that may be why my symptoms are better. I’m going off birth control in a month to freeze embryos with my fiancé as a result of this (coincidentally because my work pays for it), but I’m very scared overall.

More than anything beyond medical help, I very much miss my mother. I am 28 years old and my mother passed away when I was 15, and I just really wish I had someone to turn to who could empathize with what I’m feeling and who could talk me through this. My mother passed away from a rare (non-hereditary) gynecological cancer, so I think that exacerbates my anxiety in this area and makes me feel even worse.

I’m not really looking for anything besides validation and love here. Any similar stories would help as well. Thank you so much.

How long before you started feeling at least ypur normal after laparoscopy? Anyone actually notice a difference on bc? And when did ypu finally stop spotting when you do your normal things? I'm 4 weeks post and I keep off and on spotting when I do much of anything.

i have always had heavier than normal periods, so the feeling is normal to me. some days are realllllly shitty but i can usually handle it, take some midol and push through it. my gyno says everything is ok in there so i believe her. however, my last period was traumatic. i woke up that morning knowing it was coming and expected to start that day, i had some cramps but nothing too crazy yet. i walked around and did a few things around the house for probably an hour or so until i realized it felt like my legs were wet……..blood had fallen out of me Carrie style 😭 sooooo much. it was insane?? this has never happened before. i cleaned myself up and got ready for work within 10 ish min. when i got to work i started shivering, i could barely speak, every pore on my body was sweating and i was fighting nausea and unconsciousness. the cramps in that moment were the worst i had EVER felt in my 27 years of life. i had to have my partner pick me up and i ended up sitting in the bathtub for 2 hours. i am terrified to get my period again. has anyone had a similar experience???

Good morning ladies,

I recently had my surgery this morning to remove two chocolate cysts related to my endometriosis. My doctor also went in to remove any lesions he could find.

After surgery I was told I have Stage 4 and my doctor could not get all out only the chocolate cysts and some lesions...has that ever happened to anyone? I'm also curious on my expected pain and fertility percentage after not completely removing all.

Thank you on advance!

So my partner has endometriosis, like many she suffers with terrible chronic pain that often prevents her from doing anything but lie in bed for days at a time.

I have previously studied product design and I've been looking at ways i could use this to help her. She gets some relief at home from TENS machines (these are like electric impulses on the skin to block pain) but they're super impractical to have on all day so she only ever uses them in the house. But I've been looking at ways you could adapt a TENS device into something you could wear every day to help people like my partner get back into her normal life. I think a lot of people could develop from something like this too

I'm super early in development but was wondering if anyone here could give some feedback on this prototype (good and bad!!). The idea is this is a belt with an in built TENS pain relief and heating element. It can be worn under clothing too so you can go about your day and turn it on/ adjust the intensity when needed.

But anyone here.. is this something you would use/wear? Literally any thoughts would be helpful.
Many thanks!!

NOTE: Please don't remove, this is not self promotion (I'm not promoting anything - just looking for some guidance from others with endometriosis) nor is this a survey (just want to know people's thought, not asking any specific questions here!)

I’ve been on dienogest for about a month . This is my first period I have gotten since getting on the pill and my period isn’t ending. I’ve never went past 6days ever. The blood is brown so it’s clearly old blood but it’s like non stop. My gynaecologist is out until next Monday and I don’t have a family doctor. Is this normal? I’m very worried .

Hey. I’m currently on Microgynon to manage my periods whilst i’m on the waiting list for my diagnosis where i’ll be getting the coil. I was wondering if anyone else had experience of microgynon worsening their symptoms when not on their period?

I usually have more severe pain during and before however on this i’m pretty much always feeling some discomfort and pain

A week ago I went to the ER for horrible pain in my RLQ and inability to urinate. I was there for hours, and after a lot of tests including a CT scan, blood tests and a vaginal ultrasound, the doctor determined I have a kidney infection and three ovarian cysts.

I’ve had ovarian cysts before, but never had any symptoms alongside them. He said they’re located on my left ovary, and I have no pain on my left side, only the right. He said that they are 2 cm, 3 cm and 7 cm in size. He also told me that they’re pressing on my bladder causing urine retention which is why I have a kidney infection and haven’t been able to pee. He said to wait and see if it grows any larger or goes away and check back up in 6 months. I was sent home with cephalexin to take for a week.

As soon as I got home I made an appointment with my gyno but I don’t get in for a while. I’m horrified of my 7 cm cyst, and the chance of it rupturing. I’ve been doing a lot of research since they didn’t tell me a whole lot about it. I don’t know what kind it is, and I’m horrified to even move at this point because I’ve heard ovarian cyst rupturing is worse pain than child labor. I’m horrified of the idea of needing surgery as well.

Starting yesterday I’ve started having even worse pain in my back on my right side and spotting. Today the bleeding gotten heavier and I think I’m on my period but it’s hard to tell because I have very irregular periods and sometimes no period at all due to PCOS.

I’m just left feeling very frightened and paranoid about this whole thing, and I feel utterly alone. I’ve abstained from any sort of sex and sugar because I read those things can prevent rupturing and help decrease size. But I’ve also read that cysts that are 7 cm are going to rupture without surgery and cause the worst pain in your life. I’m worried that my “period” is actually it rupturing and I’m going to get sepsis.

Any words of reassurance or wisdom from others that have gone through similar experiences would just be so helpful right now.

Also, do you keep your employer in the loop or do tou refuse to disclose the details?

I’m not sure how to deal with this but I’m stuck between doctors who are telling me to not disclose, and employer who wants details and an insurance who doesn’t want to cover my leave because they feel that just a note saying I can’t work is not enough.

If yes, how did you manage it?

Hi, diagnosed with endo and had a lap just a little over a year ago after 11+ years of hell lmao. I had an IUD put in while under to slow the regrowth, apparently did not help. My symptoms are back, much worse. Just peeing is a majorly painful task as I'm sure you guys would know. But the ovary pain is what gets me the worst, it's horrific and I haven't found anythinggg that helps. I take ibuprofen, panadol, ponstan and codeine (not all at once lol) and they have zero effect on that specific pain and I'm at a loss on what to do. Heating pads, hot water bottles, scalding hot baths/showers and wheat sacks also don't help. I can deal with the back pain, cramps, pressure etc but these ovary pains make me almost blackout. Anyone tried and succeeded in helping this aspect of endo? Wishing you all a great day ❤️

Hi everyone, how do y'all find your pictures from your endometriosis excision on MyChart??? I can't find them anywhere but my doctor said I should be able to view them on a desktop through MyChart. Confused

Hi everyone,
I started Endodien (dienogest) as a treatment for endometriosis pain almost a month ago. During the first few days, I experienced some mood swings, but nothing too serious. Then, about a week before my period was supposed to come, I began having mild menstrual-like cramps that came and went.

My period ended up being delayed by two weeks (this has never happened to me before, but I read that it can happen with this pill), and as soon as it started (last Saturday), the pain progressively got worse, peaking during the nights over the past two days to the point where I can barely sleep. The bleeding also seems different—less in quantity but lasting longer.

I’ll speak to my doctor again; she mentioned that the body needs time to adjust, but I’d like to know if what I’m experiencing is normal and better understand what’s happening to my body. I’ve had to take time off work, and I don’t know what to expect in the coming days.

Thank you to anyone who replies! <3

I have always thought I had endo but never received confirmation until after my 3rd child was born. My periods became super painful and I was living with constant pain. I went to the hospital with right lower quad pain thinking it was appendicitis. Turns out after a ct it was 3 endometriomas that were 5 cm, 5cm, 2cm. The 5cm one on my left side had taken over that over and I had another 5 cm behind my uterus. I had a 2cm one on my right ovary.
Long story short my obgyn recommended I have my left ovary removed and start birth control. So I did...they removed all of the cysts and apparently a lot of adhesions. My doctor said my uterus was adhered to the abdominal wall. I was on birth control after and it worked for about a year, but my periods have gotten painful again. What is weird is the pain is on the left side where I no longer have an ovary. Last night was the worst pain I have ever felt and it was in my hip, pelvic floor, and radiating down my leg. Then my period started this morning and it has never been this heavy. I've gone through a pad an hour almost all day.
I called my doctor after I got off work but I don't expect to hear back anytime soon. Has anyone had anything like this? Or had pains on a side you no longer have an ovary?

Umm I’d really love to BE well. 3 months post op + new meds. I’m doing my GD best.

What’s wrong with people? Tell me the dumb things your coworkers and bosses say about your health.

Hi all, I’m in the process of trying to get a diagnosis and am pushing for a hysterectomy either way. Last ultrasound showed a cyst that they think could be an endometrioma. Next they wanted an MRI, scheduled in a couple weeks.

I am just desperate for this MRI to confirm it’s an endometrioma. I can feel it’s still there. I am about to start my period, also it’s my 40th birthday and I am going on a trip with friends. I’m so scared that I’m going to be in debilitating pain during the trip. I have taken norethindrone before from hellowisp to delay my period and that works great. This is probably a dumb question, but that wouldn’t shrink or affect a cyst just taking it for a few days right? I don’t want to do any intervention during this cycle that might affect MRI results. I know it’s already hard enough to get MRIs to show signs of endo.

Hi friends,

I was in terrible constant pain in my right abdomen and flank for a few weeks that felt different than usual menstrual cramps so I went to the ER. CT scan revealed a 7cm cyst in my right ovary that my gyno later confirmed was an endometrioma. He also found a smaller cyst in my left ovary that has since burst, as well as some small fibroids in my uterus. He removed the fibroids shortly after, but prescribed birth control and said to come back in six months to monitor growth of the endometrioma. Has anyone had an endometrioma resolve on its own? I’m looking for a second opinion in the meantime.

Has anyone tried supplements to stop endo from coming back after the surgery.

I had a lap in august and took 3 months of lupron, now my doctor recommended me to take visanne for six months but since I read such bad things about it I am a little sceptical and worried about taking it.

So I was wondering if anyone was successful with just supplementing.

Hey guys I’m new here F (22). I am just wondering what you guys did for birth control after getting your Mirena IUD removed? I don’t want to get another IUD in because I have had it in since I was 15 and I don’t think I would remember to take a pill everyday. I do use medical marijuana as pain management. What is everyone else’s experience with getting the Mirena removed and how did it affect you? I need all the pros/cons of going cold turkey on birth control.

Hello, long story short I have been suffering with GI issues for over 8 years (chronic diarrhea and constipation, abdominal pain, bloating, etc.) and recently started having pelvic pain (yes I ruled out like all GI diseases and autoimmune diseases). I finally got a doc to listen to me once my pelvic pain started and have since gotten ultrasounds and a MRI. I had a consult with one of the Nook doctors and she said they did not see anything on the MRI (I know that doesnt mean I dont have it). But we talked about surgery among other things and she told me the cost will be between $11-15k since they dont take insurance. I was really hoping they would see endo on my MRI so I knew for sure if I had it before surgery but that was not the case. It feels like such a huge gamble, I am so scared that I will pay all the money, go through the surgery only for them to not find anything (thats what I am used to...never finding anything). She also recommended I get a hysterectomy because I do not want children nor am I interested in doing birth control/iud again. She said getting a hysterectomy will eliminate the chance of it coming back and they would keep my ovaries so I would still have hormones and not be in early menopause. But it seems too easy, what really is going to happen if they take my uterus out? I love the idea of no periods and never worrying about getting pregnant but I am scared to permanently change my body like that... I just feel super overwhelmed on what I should do. If I knew 100% doing this surgery would fix all my issues, especially my GI issues, I would not even bat an eye at the cost because my quality of life is not good right now. I can barely eat anything, its a miserable existence. What would you guys do in this situation? Has anyone in their 30s gotten a hysterectomy (without ovaries taken out) that have some advice? Or any advice in general? I would love any help I could get, thanks.

Hello everyone! So I (28 y) am facing this problem at the moment to a point that I triggered phobias. First of all I was to ovulate (according to the calendar) on Monday. At Saturday night during sex I felt an intense pain at the ovary area (not rough sex or anything) and after Saturday night I had those cramps on my left area. I remember that in the past I had the same pain again at some point (fo 1-2 days) but till today I feel uncomfortable and nauseous (not any sharp pain or smth just bloated). Also I have a cyst that my gyno is aware of and once a year I get checked. After reading posts here I am super scared that 1) it can be endometriosis 2) cyst got bigger 3) pregnancy?!?! or whatever can cross my mind. I am so anxious and stressed to a point I cannot enjoy anything happening around me. I don’t even know if the discomfort is real or my mid creates pains. I booked an appointment and it’s on Tuesday but I will end up crazy until then. Please someone tell me about symptoms similar to mine or any experience would really help. My sister told me to stop thinking about it and that it happens but I really don’t know. I feel awful and so anxious I started having stomach aches. 😞 Thanks in advance!

My doctor advised me to just take the pill and live my life until I am ready to have children. He wants me to delay having any surgery until I want to get pregnant.

So since the age of 15 I have had painful and irregular periods. I started birth control at 15 which helped manage it for years eventually I stopped taking it and was fine for some time until I had my daughter 2 years ago. To make a long story short since having my daughter in 2022 I have had 2 miscarriages the most recent was in March and ever since then my health seems to have slowly gotten worse. I have lost roughly 70 lbs due to being unable to eat,unable to keep food down and having bowel movements can be hard and painful. Which this started while I was pregnant I had the stomach flu and then HG until I miscarried and eating just hasn’t really been the same but I’ve notice it’s significantly worse around my cycle but honestly I have issues all month long such as excruciating cramps,sharp pains in my pelvis left side mostly, back and belly button. I have a hard time controlling my bladder, intercourse during and days after is painful along with other period related things like extremely heavy bleeding and at this point I am constantly in some sort of pain and discomfort. So far all I am being told is my pain is normal, my labs are normal, ultrasound is normal (even though I was told I have cysts and to just leave them alone as they aren’t harmful) and mentally and physically I can’t take it anymore idk what to do but I don’t feel like anyone is listening to me. Just yesterday I had an ultrasound and I sobbed during my transvaginal from the pain of her taking pictures of my left ovary on top of having spotting and pain after just to be told everything is normal and to continue the new birth control she just prescribed. Any advice??

I had 3 Lupron injections (3.75 mg monthly) with my last being at the end of September. How soon did your period come back after ending the injections? How were your first few periods? Trying to mentally prepare myself 🥲

Would love to hear successful pregnancy stories and how long it took to get pregnant from those who have never gone for a laparoscopy.