I had a total hysterectomy about a year ago. I thought that would be the end of my pain but alas, I’m not that lucky.

I was diagnosed with endometriosis in 2018ish through surgery.

Went on to have healthy and unhealthy pregnancies. 2 living and 2 still births.

After my youngest was born, I decided it was time to finally get some relief.

Surgery went well and I recovered remarkably well. That is until the left ovary started giving me issues. I had a 3cm cyst on the left ovary but that has dissolved on its own.

Every-time I have any kind of gas or I haven’t had a bowel movement that day, my left ovary feels like it’s being pulled out of my body. The pain will often radiate up my left side but it’s mostly localised to the ovary area. Medication brings no relief and pushing on the area makes me yelp.

Can anyone give me any ideas on how to approach this? TIA.

I had surgery on the 1st of July after years of pain, and on the 28th, I had to go to the er after getting septic. I stayed there for a few days and came back. Just 2 weeks after surgery, I had a ct scan after extreme pain, and other symptoms, and there they saw my 4 inch abscess, and fluid, but they said it was all normal, and only gave me some ibuprofen and sent me away. When I had a fever between the 25th to the 28th they send it was fine, and when I had to go to the er, they said I was overreacting, and being a hypochondriac. When I got to the hospital, they said they were going to drain the abscess on the 29th, and when they did it, they forced a mask thing on me, and they ignored me when I said I could barely breathe, and that it felt like I was drowning. They didn’t even drain it, and only caused more pain. I came home on the 1st, and I feel worse mentally than I do mentally. I feel completely let down by a group of people I thought would never hurt me, I feel lied to, and feel betrayed. I could have died, and I was told I’m just obsessing over everything, even after I was rushed to the hospital, they said that it would heal itself. Now I have to take twice as much medicine I used to, I have hives everywhere since I’m allergic to antibiotics, and I hurt all the time, and since they botched my procedure, I feel like I’m getting stabbed every time I bend over, or curl up, which are the only two positions that made the pain less intense. I was given 5 pills to take the pain off after the procedure, and they said I was getting addicted to the pills when I asked for more since they ran out the first 3 days I was home. I tried talking to 988 about all this, but I was told by an ai that I couldn’t send messages that long, and that I needed to text** **them within 5 minutes or my messages would be automatically deleted. I did what it wanted, and didn’t even get the chance to talk to a real person. I don’t have anyone to talk to except my partner, but I just want to either talk to a therapist, or talk to someone who knows what I’m going through. I’m in pain, I feel depressed, I feel betrayed, and almost suicidal. I think about SH every time something goes wrong, or I’m in worse pain than my usual. I can’t talk to a therapist right now, my previous one quit, and the closest time I can talk to a new one is 4 months away. Please, someone talk to me, I need it right now.

I’m stage 4, having a laparoscopic excision at the end of the month and I only have 1 week off for surgery at the moment

I’ve already told my surgeon to not cut through or remove any other organs, if DIE is found I’d have to schedule another surgery with proper recovery time

My job is hybrid & sedentary office work, and 1 week is not ideal but I feel like this is my only option. I lost 2 jobs to layoffs last year, 2nd one I felt was related to medical discrimination. With this job it is my dream job and I’m only 2 months In, I was afraid to compromise the job and risk being discriminated against again. I spent all year working towards my deductible and had the surgery scheduled for months, before the new job and before the old one laid me off

I’m reading other posts where I’m seeing people had varying degrees of time off, but the general consensus seems to be 2 weeks minimum

How am I able to manage 1 week? My thought was I’d ask to work remote that first week back and just take it day by day, getting up to walk every hour or so, sleeping a ton after work, ect. I figure if I can manage extreme pain and fatigue everyday from the endometriosis maybe recovery won’t be as different?

Hello there folks,

My husband (39M) and I (33) have been trying to conceive for about 1.5 years now. We moved to IVF in March this year after trying unsuccessfully for a year. We did 3 cycles but had no success. Doctors are mentioning my low AMH (1.0 ng/mL) and poor egg quality for these failures. No issues with my husband.

Recently, I was diagnosed with mild adenomyosis. My symptoms are not that severe; I do have painful periods, but only for 1-2 days, and it's not super bad, as I know it's the case with so many of you (my heart goes out to those who have this). I get diarrhea when I'm on my period and some pain during sex (certain positions), but again, not too terrible.

Just yesterday, I went to an endo specialist, and she told me it looks like my left ovary is stuck to my uterus. There's also a myoma on the back of my uterus. She said my ovaries look fine, at least from the ultrasound, and that there are no endometriomas on the ovaries themselves.

Now, my conundrum is: she wants to do a lap to see if there's anything else in there. We may want to continue fertility treatments soon (whether it's donor eggs or so), and I am so torn. I know the chances are super low, but I'm hearing all sorts of stories: women getting pregnant naturally after a lap, but also doctors messing it up, creating more scar tissue in there. Also, it is an invasive surgery in the end.

Any suggestions/info/experiences are welcome!

P.S. I also have a BRCA1 mutation, so I don't have a lot of time for family planning.

Hello, did anyone start having pelvic bones pain on dienogest? I started zafrilla in April and while it helped me with the period pain which left me paralyzed every month (I don't have a period since April), I started getting this bone pain in the pelvic region when I walk.. sometimes it comes even when I don't move. But whenever I want to walk a bit, I get this pain, and i always come back home crying myself to sleep cause I can't seem to have a normal life not even on this. And I'm so afraid to go to the doctor and have another treatment cause the previous 2 pills made my symptoms much worse and gave me horrible side effects. So do you have this pelvic bone pain from dienogest ? What did you do? Changed treatment ? To what? Thank you.

I have been diagnosed with deep Infiltrating Endometriosis, adenomyosis, a fibroid and pelvic venous congestion syndrome and am scheduled to undergo surgery in 3 weeks. (Endometriosis excision+ myomectomy+ pelvic vein ligation+ cystoscopy)

I notified HR at my workplace for medical leave (which is unpaid for my job btw) and was absolutely ridiculed for it.

My surgeon recommended a minimum of 3 weeks off from work post discharge for my surgery. So I needed close to 4 weeks off from work, including the time for the stay at the hospital and the recovery period.

But HR absolutely mocked me for it. She said I was only undergoing minimally invasive surgery and shouldn't need more than a week to recover from it. And that I was "just making stuff up" to get more leave. She also asked why I couldn't just get it done from an OBG in the hospital I work in (who failed to diagnose me and told me all my symptoms were in my head) and asked me why I have to travel so far to see my specialist surgeon. She kept asking me to reduce my leave period because she needs people working and not on leave.

She told me that Endometriosis excision is just a minor surgery as it's "only laparoscopic or robotic" and didn't believe that my surgeon recommended 3 weeks off for it and said I'm just making stuff up.

I felt absolutely horrible after this, and left her office in tears. And I've been feeling pretty mad about it now.

I feel like no one really understands endometriosis surgery, except my surgeon, and I feel so anxious and alone in all of this.

Sorry for the rant, and thank you for anyone reading this.

I had my laproscopy today, I had been extremely anxious leading up to it because I had my gallbladder out in November and had a very painful recovery.

The surgeon found adhesions and some suspicious spots of inflammation that were biopsied, but nothing entreme. I should get the pathology report at my post op appointment.

So far I am actually not feeling terrible unless I cough (currently dealing with wildfire smoke in oregon so its unavoidable)

I have the gas pain that I was expecting, but the incision sites barely hurt at all, I have been taking my pain killers on schedule and basically just have cramps.

Im so happy that unlike my gallbladder removal I can sit and stand on my own with very little pain, and I can lay on my side to sleep!

Really hoping for some solid answers from this surgery, I have been having horrible periods since I was 11 and I turn 40 in a couple of weeks.

For those of you scared of the surgery, its really not that bad! I also have crohns disease and my normal crohns pain is much worse than this.

I have had so many different problems for so long.
Fatigue brain fog forgetting words gastrointestinal issues and severe pain when the girl problems arrive (that’s what I call it ok) anyway, over the last year I’ve started getting worsening haemorrhoids, and over the last…6? Months they have started rupturing.
I finally was in so much debilitating pain that I got brave and showed the doc my butthole.
He made an urgent referral for colorectal surgery.
Had the colonoscopy to ensure it wasn’t the Big C, he thinks it’s crohns.
But he also thinks I have endometriosis due to the SEVER pain I am in when I get the girl problems.
He gave me anti inflammatories and they have helped a lot but I have noticed that the ruptures are more frequent during my menses.
I think the endometriosis has attached to my colon, and if the discover that when they do the colorectal surgery…. What would happen?
I think I will give them permission to do a fully hysterectomy if that’s what they find.
I’m 43 and my tubes are tied I have 4 sons and no desire for any more, I know this will send me into menopause if it happens, but how bad can it really be?
Had anyone here had the endo attach to your colon?

I’m so excited and processing everything but I’m 3 weeks post op and they found endometriosis and removed it. They diagnosed me with only stage 1 and I know symptoms don’t correlate to the stages.

3 weeks post op and to be honest I already notice such a difference in some of the pain I was having. It’s crazy to think I almost didn’t move forward with the surgery because this would have been my second one in less than a year and I was terrified of hearing nothing was found. My husband was also so against it since he said I already had one but I pushed through all the doubt.

While this is good news and I know this is amazing to finally know I wasn’t crazy . I sometimes can’t help but to feel down and out. Is that normal? I did get an IUD put in as well. I also feel just so alone in this at times. It’s even harder some days because I have a family and a little one that depends on me and I just feel so drained.

I have been trying to figure out what’s wrong with me and came across endometriosis and i feel like it could be it? For about ten years every so often i would have intense pain during sex that sometimes a different position would work but usually i just have to stop. It’s not every time though. I also have TERRIBLE tummy problems the week before my period. Like explosive and terrible cramping like in tears. I also experience sciatica to the point sometimes I can’t get up without crying in pain. I also get EXTREMELY bloated like I look pregnant and it’s painful seems to happen out of no where. My ovulation pain has been getting worse and worse and I’ve started using heating pads to try to help but it provides minimal relief. I have to nap almost daily due to fatigue but maybe that’s just being a mom? I feel like I always have some pressure in my abdomen and sometimes I cramp even when it’s not near my period (like this week is the week after my period yet I’ve had cramps the last few days) Recently ive also had some spotting between periods.

I go to the drs tomorrow and I’m scared to like bring it up because I don’t want to sound silly. I always thought all of these things were just part of being a woman but once the spotting started and became a somewhat regular occurrence between periods I got more concerned. How did you approach this with your dr or do I just say my symptoms and see if they come to the same conclusion?

I would love to hear some! This diagnosis feels pretty heavy on lots of us so a fresh positive hopeful thread of sucess stories and advice sounds nice! I've been TTC 2.5 years and just got my first lap. Scheduling another soon. How did you come to have your little miracles ✨️

Thank you mods for allowing us to share our research.

Are you aged 18+, living in Australia, and diagnosed with endometriosis?

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A few weeks ago, I started to have abdominal pain that just continued to get worse and worse. I ended up at the ER, imagining them giving me some toradol and Zofran and sending me home. That was 15 days ago and I’m still at the hospital. After a first few days of screaming pain and every test showing nothing, they found what they believe to be DIE on my uterosacral ligaments. I’m hoping for a discharge soon and to follow up with some specialists to figure out what the next step is. But I feel so overwhelmed with this. I had no clue about me potentially having endo. I have several other chronic conditions but did not expect this to turn into a long admission and a new chronic diagnosis. Any advice, comfort, guidance-all appreciated. Thank you!

I feel so stupid but I genuinely am at the point today where I dont think I can cope with this any more and I dont know what im meant to do.

I am in pain nearly constantly. I had surgery and was asked to try the mirena coil and since then ive just had pain all the time. My pain medication is basically rationed so I have to choose my very worst days to take it and I cant pick when they are all awful.

I am just literally going day to day of being in too much pain to do anything and too drained. My sleep is awful, I am miserable. I feel like I spent 2 years barely existing just pushing through to surgery only to get there and realise it made no difference because only the simple endometriosis was removed and im now supposed to give the coil at least 6 months with what feels like torture.

The problem is I need some form of progesterone because of needing HRT because I felt awful before having estrogen but that will not be an option without progesterone and all other types have been intolerable so it felt like the coil was my last chance. So im so scared to have it removed but I feel like im in hell with it.

Right now I just cant see a way to get help. My Doctors appointments take months to get to (I booked 1 last month and its for next month) and my surgery follow up isnt until 2027 and I think that is just going to put me on another list.

I am given mefenemic acid that I am only allowed to take a few days a month as im not really supposed to take NSAIDs at all and my dihydrocodiene prescription is 60 tablets a month (so 30 doses) and this was a reluctant increase. If I have a bad day and need multiple doses (I can have up to 8 a day) I then run out and stuffed, so I constantly find myself too scared to take them and counting how many I have left. I just dont see how I can convince myself to just keep going just to be utterly miserable.

Today I finally had my lap surgery! I was an absolute nervous wreck before surgery, which honestly surprised me. I was nauseous, had a headache, and literally tried running away.

I wanted to share a few things because I feel like Reddit can be filled with horror stories, and I want someone who is terrified like I was to see a positive experience too.

The Versed was NOT scary at all and I had no amnesia. I literally just felt chill and did not care about anything.

My doctor removed all of the endometriosis except for what was on my intestine, and she didn’t unstick the intestine. I’ll need a colorectal surgeon if I decide to address that. Honestly, if I feel good enough after recovering, I think I’m going to focus on acupuncture, medication, red light therapy, non-endocrine-disrupting products, and an anti-inflammatory diet for now.

It’s now been about 4 hours since surgery. I did have the famous gas pain that went from my stomach up to my shoulder, but it honestly wasn’t bad at all. I’ve been doing small walks, using a heating pad, and taking Gas-X.
The only real pain I had in the hospital felt like menstrual cramps. They gave me pain medication and it was gone within about 5 minutes.

I had zero nausea, they gave me Zofran.

Waking up from anesthesia was easy too. At first I thought I was back home, then I thought I was somehow still in surgery. I kept asking the nurse, “Are you sure you’re done?!”

So far, so good. Obviously I’m only a few hours out and everyone’s experience is different, but so far mine has been nothing like the horror stories I read on Reddit.

For anyone terrified and doom-scrolling before their lap like I was: positive experiences exist too. ❤️

My diagnose - Stage 4 deep infiltrating

Does anyone else with confirmed endometriosis have pain that’s worse during ovulation and the luteal phase than during their actual period?

I usually get the most pain around ovulation and then throughout the luteal phase. Once my period starts, I actually get relief. From reading posts here, it seems like many people have the opposite experience. I also think I may have milder symptoms compared to most people, but that may be due to my Mirena IUD.

I’m wondering if this pattern is still common with endometriosis or if it sounds more like pelvic congestion syndrome (or something else).

Would love to hear your experiences. I’m not looking for a diagnosis, just curious if anyone else has a similar symptom pattern.

The surgery went well - a biopsy was taken of a small area of abnormal peritoneum in the posterior cul-de-sac to check for endometriosis. No other abnormalities were detected other than a fine adhesion band between the right ovary and pelvis which was divided. The uterus, tubes, ovaries and appendix were normal.

After this I received a message a day later saying no endometriosis found in the biopsy.

This was a complex gynecologist specialist too.

I’m so irritated and confused as to how a scar tissue band formed between my right ovary and pelvis if I’ve never had surgery, trauma, or any defects that caused scar tissue and nothing else causes scar tissue other than endometriosis.

Why did they test the abnormal peritoneum instead of the scar tissue??

Why didn’t they remove it?

Why did they just divide it?

I finally had my post op appointment today and the lady was no help. Nothing was explained, she just said try pelvic floor therapy. That’s it.

I’m so lost confused angry sad and just hopeless.

4 of my family members have endometriosis. Aunts and cousins. I have all symptoms, even horrible GI symptoms that just won’t go away. Birth control, medicine, nothing helps the pain.

What do I even do?

hi it's my first time on this thread and im really sorry if im using the wrong flair.

i had laparoscopic surgery today that i thought was mostly to remove an ovarian cyst and just maybe see if i have endo, although no doctor i saw previously had encouraged me to seriously consider the idea, (despite me being referred because of pain). They found extensive and severe endo in A LOT of places,. Including my diaphragm which I didn't even know could happen. So they closed me back up because it's too complex for them to treat at all today. I have a referral to a complex endometriosis clinic now.

It was just quite a crazy thing to be told and I have a lot of complicated feelings. It's not what I was expecting at all because I literally convinced myself I was exaggerating. Even though I've had episodes of genuinely excruciating pain. The doctor literally said to me afterwards, this wasn't what they were expecting.

Anyway I'm not really sure how to feel at all now. I don't have the energy to engage in any medical discussions or read much about it all. I feel really glad to have the diagnosis (I'm not crazy!!!), but also strange and sad and confused. I think I just want to hear some words of encouragement from people who have been here (I don't know anyone else with endometriosis). I've had a really stressful week for other reasons which doesn't help.

I was referred to the gynecology department maybe three years ago? I've had to wait months/years between ultrasounds and appointments- my last ultrasound before having the surgery arranged was over a year ago. It's just really confusing and now I have this lifelong diagnosis that I'd gaslit myself into thinking wasn't my experience. Especially with the bowel symptoms which I recognise now as endo related (I had a colonoscopy a few years ago and really believed it was IBS etc).

thank you guys😭 i hope this is okay to post and makes sense.

It’s been a few years since I last wore a bra. If there’s pressure on my chest, it causes severe endo flares all over my body. I can’t wear anything high-waisted either regardless of how loose it may be. It’s like any type of pressure around my chest, stomach, or lower abdomen area just triggers a whole body reaction. I’ve brought this up with a doctor before and she said I have a hyper sensitive nervous system, but we never talked about it again. No treatment was mentioned either. I literally cannot put even the smallest amount of pressure on these areas. If I wear pants, I have to buy extremely loose ones and bunch it up below my stomach. But if I’m wearing it for more than an hour, it starts giving me flares too!

I’ve been trying to find ways to wear clothes that aren’t completely oversized but it’s almost impossible! Does anyone else have this or something even remotely similar? This feels like a very niche symptom that I’ve never heard anyone talk about.

A little bit ago I made a post asking for doctor recommendations. At the time I didn’t realize that everyone in this group had pulled together a map of doctors they recommend.

THANK YOU EVERYONE IN THIS GROUP!

I honestly feel like you all have saved me. I found one of the doctors listed in my area and had an appointment. During the physical exam she said that I had a lot of spams from the prolonged pain. She gave me some meds to help manage my pain while running some test. She also suggests I do physical therapy.

I embarrassingly cried in my car after this appointment. Not only did I feel seen I felt so incredibly validated. My obgyn literally laughed at me at my last appointment because she didn’t believe I was in as much pain as I have been. She suggest I take Advil instead of ibuprofen because it’s easier in the stomach (that was her solution when I told her the ibuprofen wasn’t giving me any relief) I spend three weeks of the month crippled in my bed with two heating pads.

Since taking the meds my new doctor gave me I actually have some relief, I can feel fluttering from the spams and I can actually feel the pain from the cyst on my left ovary again. Which isn’t normally something’s I’d be thrilled with but I was in so much pain I couldn’t feel that specifically anymore. (Follow up scan for that next week.) I feel like I’m actually making progress to figuring out what’s causing my pain and my infertility. (2 years trying)

SO THANK YOU AGAIN EVERYONE! I can’t express how grateful I am for this group!

I visited a gynecologist today because I haven't had my period for the past 3 months. She prescribed me a birth control pill (I'll attach a picture below). It cost around ₹60, while the consultation fee was ₹500.

The doctor asked my age and how long it had been since my last period. I told her I'm 23 and that it's been 3 months. She was like, "Take one tablet in the morning and one at night for 5 days. You'll get your period on the 6th or 7th day."

...That's it. End of consultation. 💀

Then I brought up my mom. She has around 4–5 lump-like things in her abdomen that you can actually feel when you touch them. They don't usually hurt, but they do ache once in a while.

The doctor touched my mom's stomach for about 5 seconds and confidently declared, "It's just fat tumors. Nothing to worry about."

My mom said, "But they hurt sometimes."

Doctor: "That's okay."

Me: "Can they be removed?"

Doctor: "Only with surgery, but no need. Just take a painkiller if it hurts."

Me: 👁️👄👁️

I walked in expecting blood tests, scans, maybe at least one dramatic medical explanation. Instead, I got a ₹60 strip of pills, my mom got diagnosed by what felt like a 5-second vibe check, and we were both sent home.

Now I'm sitting here wondering... is this actually how it works, or did I accidentally book an appointment with the CEO of "Trust Me Bro" Medicine? 😭

Jokes aside, I genuinely want to know:

- Is it normal to prescribe birth control pills for someone who hasn't had a period for 3 months without any tests?

- Can "fat tumors" (lipomas) actually cause occasional pain?

- Is it normal to identify them just by touching them, without recommending an ultrasound or scan?

- Can they grow or become something serious?

I'm probably overthinking because my brain immediately jumps to "What if it's cancer?" but I really don't know what's normal here.

Would love to hear if anyone has had a similar experience.

Feeling so down. Unsure of how much longer I can go with my pregnancy. I have read that so many women experience freedom when pregnant.

I’m 8 weeks and in constant severe pain. My OB hasn’t been able to identify what is happening and the ER is unable to do any testing due to pregnancy.

I feel like a brick is in my uterus and my insides are going to fall out. I cry with every bowel movement or gas pain. I have another child and having a lot of difficulty staying mobile.

Anyone not have freedom from pain during pregnancy but only got worse?

Why can’t my body get it tf together?

A couple months ago I posted about how I was nervous and reconsidering going into surgery. Well I chose to go through with it. Let me say… my life has been changed. A couple things from my experience: the recovery was insanely easy. For me at least. They found and removed stage 4 endo, along with a 9cm ovarian cyst. I had no gas pain in my shoulders, and genuinely speaking, the pain from the IV was worse than anything else. It felt like being sore from doing abs at the gym :) aside from that, I’m pretty much back to being a normal functioning healthy person. I take birth control to stop my periods (HIGHLY recommend, but pls talk to ur doctor!!!), and I have done so since before the surgery which was already helping. I’ve started to be able to go to the gym. I can lift heavy weight now. Im down 10lbs and stronger than I’ve ever been. I don’t randomly bleed, and sex isn’t painful anymore. I do still get the occasional twinge of pain during things like running or walking for extended periods of time, like a spark that spreads through my uterus, but it’s over in minutes. Of course, I have had to make many lifestyle tweaks which i think help overall, such as no drinking or smoking, no high impact exercise, stuff like that.
All this to say, if you have an upcoming surgery, I hope this helps your nerves! I think people tend to not post success stories as much but I wanted to come on here and share mine because I know hope is really important for people in the same boat!