I don't know what to say but I'm just feeling crushed. I feel like I'm losing my fiance, my best friend because of this disease. He tries so hard. Intimacy is damn near non existent because of me. He says he would never leave me, most especially that he wouldn't leave because of the disease. But its making him feel inadequate. He told me he feels pathetic because he didn't initiated intimacy on our couples night. I think he just doesn't know what to do anymore. Before, we used to have a great sex life. Then my symptoms got worse and sex was painful and i bleed every time. He knows it's hard for me. My self confidence has plummeted to nothing. I don't blame him. This is difficult to navigate for us with the disease but also difficult for our partners. It's taken everything from me and now it's taking everything from him. That's not fair and i know he'd be so much better off without me. I'd go to therapy, both personal and couples but it's out of our budget. I know it's taken a lot from each and every one of us that deal with this wretched disease.

I guess I'm posting because I just need to be reminded that I'm not alone.

💛

I’m 33F and have had ovarian cysts rupture 4 times in the last 5 months. Every time has caused an hour of full blown, doubled over agony followed by a week of twinges and dull pain. Side note - it starts with this incredibly intense twisting pain directly behind my belly button which feels like someone is grabbing a cord and pulling it. Does anyone else get this in relation to cysts?

My first scan (6 weeks ago) showed a cyst on both side - one 3.5cm and the other 5.5cm. One was hemorrhagic. My follow up scan (today) showed cysts on both side - one at under 5cm and one only a couple cms. It sounds like they are rupturing and re-growing quite quickly from what understand. Waiting for a referral to gynae from my GP but until then it seems like I’ll just go through this pain every month. It happens at the end of each month almost like clockwork but not linked to my cycle i.e. has happened before ovulation, after ovulation, before period, after period).

I have a couple of concerns - one is what’s causing them and the chance that it’s endo since I seem to read and relate to a lot of symptoms and endo posts on here. We are also trying to conceive so I am very aware of this potentially causing issues with that.

Main pressing concern is we are due to go on holiday to Malaysia next week - the flight is 14 hours - should I be concerned about making the trip? The sonography didn’t seem to think it would be a problem.

Anyone have any similar experiences and advise for what happens next? Should I be looking more closely at endo for the cause? Doctors have been dismissive when I’ve mentioned it in the past

I’m trying not to spiral into a panic but failing.

I had surgery 16th September and was pain free until a few days ago. It’s started again after the end of my period and it’s the exact same left sided pain radiating from my front to my hip to my flank.

I was told there was endo behind my womb and I can’t remember if he said on or behind my ureters but it was stage 1. And I’m an idiot and when he said if I had any questions I didn’t ask if it was ablation or excision because I have social anxiety and didn’t want to appear ‘rude.’ Yeah, my brain works in mysterious ways but that’s another issue.

I had a follow up on the 28th October and I was like ‘yeah I’ve had no pain whatsoever it’s been great!’ So of COURSE days later I end up with the pain again….

I’m so scared it’s just returned for good because I can’t function when it’s around. It’s just not possible to not think about and I hate having to rely on heavy pain meds just to go to work.

I don’t know what my question is…. Could I still be healing from whatever he done in there? Or is the surgery a failure? My mental health has been absolutely terrible and this is the last thing I need to come back…

There is times when my period are more painfull in asshole than usually. Since yesterday (period start) I have pain in the ass like crazy when I sit I scream xd

Does anyone else have this?

I got excision surgery in July and honestly, I've still had terrible pain. Specifically for about a week before my period, I will have brutal inflammation in my pelvis, back, hips, and legs. It feels like burning, pinching, aching, and just not good.

I had endo in 4 or 5 spots and they believe they excised it all, so why do I still hurt so much? I started working again a couple weeks ago too and I'm having such a hard time with the standing aspect, but I don't even work a lot. I couldn't ever do full time.

If the excision was successful, then why don't I feel better? Has anyone else gone through this? I'm feeling so fatigued and sore all the time. I thought surgery was supposed to help.

I’m getting the coil put in on the 8th, and I’m still going to be on my period. I told my gyno and he said that’s fine, and as a healthcare worker I know they’ve seen EVERYTHING before but I’m so nervous bc I’m going to be anaesthetised.

I have mild OCD to do with hygiene and fear of smelling bad. I was anaesthetised for my lap and wasn’t even on my period and baby-wiped myself about 5 times while I was waiting to go in because I knew I was gonna be naked. I suppose coil insertion maybe isn’t even a sterile procedure?

Plus I wear pads, and I’m very clean about it but there’s still gonna be a bit of blood on ma cooch and I’m scared of it getting EVERYWHERE during the procedure cuz I have a heavier flow.

Ahhhhhhhh! Please can someone ease my fears 🙏🏻

EDIT: Also, this is to ease my pain, but I’m even more nervous because I have such a sensitive cervix, hence why I’ve been traumatised by tampons, I just know it’s gonna be hella sore after

For background: I was diagnosed with PCOS and put on metformin at 19. This past February I was diagnosed with Endo at 28. I never had a problem with weight gain until I turned 28 and I think a lot had to do with inflammation. My period was still heavy and still had severe (although less severe from before the surgery) cramping up until four months after my laparoscopy, since then it has been barely there. Like light brown spotting and minimal cramping. I also started a GLP1 two months after the laparoscopy. I’m wondering if anyone has had anything similar happen? I don’t know whether to attribute the lighter (and all around better/easier) periods to the laparoscopy or to the medication. Never in my life has my period been this tame and for whatever reason it’s worrying me even though I should probably just appreciate it while it’s this mild.

And if it matters, I have not lost a crazy amount of weight in a short period of time. I’m finally ten pounds away from my normal weight before the endometriosis started rearing its ugly head about a year and a half ago.

Does anyone else have this? I feel like it’s gotten even worse since I started birth control. It feels like somethings stuck inside if that makes sense? And sitting makes it worse. I used to only get butt lightning during my period but now I have it daily and a constant pulling/pressure sensation. I’ll usually have this pain and get stabbing pain in my ovaries at the same time, has anyone else had this constantly?

Hello, I am a 21-year-old woman, and I was recently diagnosed with a 20 cm endometriotic cyst after experiencing abdominal pain, pain while urinating, bloating, and discomfort when moving, especially at night while trying to sleep. I had a transvaginal ultrasound, which led to the diagnosis. My doctor has suggested cesarean-type surgery as the only option. My concern is that I have a flight from Colombia to Chile next week; this trip is very important for me academically, and I would like to know if anyone has had similar experiences and what recommendations they can share. Is it safe to travel with a cyst of this size? What precautions should I take during the flight? I appreciate in advance any advice or experiences

I am 2 weeks post endometriosis excision surgery. My belly button incision is having a yellowish discharge that looks trapped under the surgical glue. It is also a little itchy. Do you think it looks infected?

Hi all. I’m an endo-lifer at this point. Diagnosed in 2002 (non-surgically), first lap in 2006, countless since which resulted in two oophorectomies and a hysterectomy. Fast forward a couple of years and I’m surgically menopausal with a grade 2 rectocele prolapse. I’ve been vomiting for at least three weeks and the nausea is terrible - I’ve been unable to work or eat. I’ve had chest pains (was in ED yesterday with no answers), constipation, and now some blood in my stool. The ED doc couldn’t believe I don’t have a gynaecologist anymore (I’ve been fobbed off because I have no reproductive organs left).

I usually use cannabis for my symptoms but am taking a break just incase it’s CHS (I highly doubt it, I don’t smoke and only use low THC products). Does anyone in Australia (preferably VIC but will travel at this point) have any positive experiences with a specialist who will search for endo in the rectum and thoracic or anywhere else? In my years of experience if they can’t find something from blood tests and scans, it’s endo.

Has anyone else had this issue (globally?) what helped? Screaming into the void seeking relief, my tank is so empty. Thank you.

Ever since I was diagnosed and started with hormonal treatment (which was worked significantly to reduce my pain) I can confidently say, I'm getting sick with fever, general discomfort, sore throat, aches everywhere every month for one or two weeks.

I'm a SAHW and I don't go out much because I work remotely, moved to my husband's country and don't have any local friends to hang out with and the only times I go out is when my husband plans dates for us or we need to run some errands. Other than that, I don't really go out much for me to be catching seasonal viruses or whatever... This plus the constant feeling of being tired and sleeping 10+ hours (maybe chronic fatigue?) has me in a weird life routine...

That being said, does this happen to anyone else?

More context if needed: I was diagnosed with stage 3 endo, I'm on hormonal treatment (Slinda pill + Mirena), I'm 30.

So many comments about how these diets or work outs will cure or “heal” chronic illnesses. Putting BLAME on people with chronic illnesses specifically targeted towards female health for the view and $$, is just nasty. We have so many people who are DESPERATE to feel better and get their life back who would adamantly follow these people.

And the truth is, there is no cure, you cannot heal many of these diseases. Exercise can be amazing and helpful for some people but not attainable for all. Diets can help some people but not all. Not all conditions are created the same. One person with endo will have entirely different triggers than another, as with any disease. And for the love of god, let us enjoy food. We are already miserable enough.

PS I just drank a strawberry and cream Dr Pepper and it was so good. Lmao. STILL FEEL THE SAME AS I DID WHEN I FOLLOWED THE AIP/ANTI INFLAMMATORY DIETS!!

Hi, I don’t know where to put this so forgive me if this is not the right place. Over a year I have been struggling with incredibly painful periods that mostly manifest in terrible terrible bloating that sounds like what a lot of people describe as Endo belly. It’s very painful (I look 100% pregnant) and takes me down for about 3 to 4 days every month. I’ve been to doctors (GI and OB) and no one knows what to do with me besides birth control. They say I don’t fit any of their requirements for endometriosis, PCOS, or really anything. They just say I’m getting older (I’m 35) but my gut says there’s something else going on. I’m very very sensitive to hormones and would rather avoid that route, but wondering if anyone has had experience with this? My periods are regular, I test for ovulation confirmation, but basically I’m miserable a lot of the month. I already eat gluten-free and dairy free. Any advice is welcome. 🤷‍♀️

Randomly noticed I was bloated a few days ago. Idk if now that I’m constantly observing my stomach I feel like I’m more bloated then normally, but it’s pissing me off. I’m going to the washroom normally btw. Can it be weather change? Stress?

Does anyone also get bloated around this time or the year? I’m thinking it’s cuz maybe I’m not as active as usual like for example in the summer.

Hi! I am newer in my (suspected) endo treatment and am confused about when laproscopy actually comes into the conversation. I've always had bad periods but in the last year each period has gotten increasingly worse with my last one leaving me debilitated and traumatized. I have basically every symptom of endo imaginable. Over the last month, I've gone to the ER and have started seeing a helpful primary care provider who is starting me on birth control to control my symptoms. I've had scans and ultrasounds to check for ovarian cysts etc and found nothing. I will start seeing a GYNO in 2 weeks. If all signs continue pointing to endo, when do start seriously considering LAP?

I know this question can be very specific but any input would be helpful. I cannot walk 3/4 days of the month and I don't know how much longer I can survive with this pain.

Hi I am hoping to get some feedback because of course I’m spiraling into 14 different directions with what could be going on and what might have caused it.

To start, I’m 37 and had laparoscopy removal of my endo around 10 years ago. Since then I’ve primarily been on oral BC and have not gotten periods. I’ll get phantom cramps sometimes but largely I would say I’ve been successful minus a lot of awkwardness or pain during sex.

The last few weeks I’ve been more sexually active than I have been over the past few years but that’s never been a huge issue in the past either as far as pain management.

I also have gluten intolerance and am on a few other meds so I have to pay attention to what I’m eating etc. I started trying a new probiotic drink this past week and things felt ok. Generally when I start getting stomach pain I think to where I may have potentially been “glutened” because typically there’s some sort over cross contamination oversight or something.

All’sto say, not this time. Since Friday evening I’ve had horrible lower abdominal cramping/pain. The worst part is I’m also not able to drink/eat really because I feel so bloated. I had attributed to gas and maybe less BM because I’d not eaten but it wiped me out Friday. I took it easy Saturday, ate light, and now today I’m getting punched in the gut again.

It’s so close to the pain I feel in my back and stomach with endo I’m worried something is going on.

Can anyone relate or help with determining if maybe this is or isn’t endo related?

When I put pressure on my stomach to kinda push around it really is painful but also seems to cause pain a little further down too, similar to what pain I feel during sex honestly.

Any feedback is appreciated 🥺

I don’t mean frequency or urgency every few minutes. The urge is permanent all the seconds without relief after peeing. It’s 100% of the time there.

I don’t know what I want from this maybe advice or home remedies or your experiences. The first one was to clean up the endo and remove a chocolate 10cm cyst in my left ovary. The second was because both ovaries had grown cysts. Is 3 laps too many? The last thing on earth I want to do is have one or both my ovaries removed. I’m so lost 😞

Hi all!

I’m getting my first laparoscopy 11/11. I’ve been searching through the posts for tips and things to get pre op to help post op. I got the below so far, and my parents will be helping around the apt and with my pup.

• Wedge pillow
• period panties
• antibacterial soap
• long socks
• some arts and crafts things
• button up dresses/night gowns
• miralax
• gasX
• I’ll be bringing a pillow for the car ride home
• gel pack that can be heated or frozen

Would you guys recommend getting anything else? What foods should I try eating the first couple of days after the surgery? And days before the surgery? I took 2 weeks off of work to focus on getting better.

Thanks in advance! I’m super nervous about getting surgery and getting put under but happy that (hopefully) I’ll get answers to my horrible period pain and why they have been getting worse.

next to my belly button incision, right below it, it’s really bruised and there’s one spot that’s a little dark and right where that is there’s like a hard lump?? is that just normal swelling or should i phone my doctor? it was there from the beginning but it kinda like went for a bit and it’s back again now 😭

Last friday I had my period, after being 2 months late. The blood was brown, and not a normal "period amount" to me, then yesterday it stopped. Now stomach/abdomen hurts and I have some bleeding discharge. Is this normal with endo?

I had an ultrasound for pain and discomfort in the lower left quadrant of the abdomen/pelvis. Something feels very wrong in the area of my left ovary, almost feels like a ball of pressure, and has for the last 2 cycles with each cycle getting worse and more irregular. My doctor thought it might be an ovarian cyst, as I'm 25 and they are fairly common in younger women. The ultrasound came back normal, except my anteverted uterus has changed to being retroverted and retroflexed. I have all the symptoms of ovarian / cervical issues, and I have lost 50 lbs in the last 6 months (which started out due to diet and Med changes, but the last 15lbs not due to anything). My doctor wrote it off as a bad cycle. Is there something to the uterus tilt changing that could mark something else going on that my scans aren't catching?

Seven years ago I got a laparoscopy done to remove growths and officially diagnose me with endometriosis. I have had manageable pain for the most part over the past seven years but recently the pain has gone from manageable to leaving me completely bed ridden for weeks. It’s more brutal than when I was first diagnosed and unfortunately they are not wanting to do another laparoscopy in case it’s on my fallopian tubes which they would scar more.

It’s exhausting already living with this but with this level of pain I’ve never experienced something so debilitating before. The emergency room (like always) was no help and just gave me IB profen. I’ve essentially only survived not screaming in pain by dosing myself with a mix of edibles, tyllenol, cbd drinks and the shitty IB profen they gave me.

Has anyone else had this happen where it just hits so bad out of no where and then goes on for months? Any advice or pep talk definitely needed since I feel like I’m losing my mind a bit.

Hey everyone! For those who’ve had excision surgery to remove endometriosis lesions and adhesions around the uterus and bowels—did you find relief afterward? Especially for those who skipped their periods post-surgery, has this helped prevent or delay recurrence? I’m considering taking contraceptive pills to stop periods after surgery, but I keep seeing posts about endo returning just 3-4 months later, which is really discouraging. Would love to hear your experiences!

Hello everyone.

First please let me say that I hope I am not intruding or causing any offence by asking this. I've written a piece of fiction that includes a woman who suffers from endometriosis. I want to make sure I understand the experience of the diagnosis. Would anyone from the community be willing to exchange some messages with me regarding their experiences and my depiction? I will do my utmost to be respectful of what you are going through if you do want to talk with me. It will help if you enjoy any kind of literature, but this isn't essential.

If I am out of line in asking this here, sincerest apologies as well.

I had my IUD insertion, under anesthesia, the past Friday and when I woke up I was in so much pain. I was screaming so loud and a lot of nurses rushed to get to me. They gave me toradol drip and apparently hydrocodone. I felt a bit better staying still but the minute I get up to go try using the bathroom the pain gets so bad I had to have a wheelchair. My nurse went and asked my doctor multiple times if I could have a longer script of hydrocodone than just 3 pills.

He’s worried about dependence and then said “you need to try to use other methods for chronic pain. Like praying, meditating, physical therapy”.

I almost blew up. I have my physical therapy consult later in November but the line for pain management is so full that I’m struggling to get an appointment.

So like… when I’m in that much pain and legit can’t move… I’m supposed to go “see nature”, pray, and meditate. Wow. Just wow.

Ps. The hydrocodone helped a lot (night after procedure) but I still had waves of bad pain peaking through.

I’m so exhausted :( like if weed, Advil, and midol together don’t help me through a flare, what am I supposed to do? This man expects me NOT to ask him for pain killers? Me eating healthy can only do so much.

Oh and my doctor said he doesn’t think I’ll need any pain meds really because the anesthesia will act as a heavy anti inflammatory agent. Come on dude.. I barely slept last night bc instead of having hydrocodone I have to resort to weed and my OTC meds. That shit barely helps when it gets bad.

I feel so bothered by the fact that he was like “so how many pills do you want?” As if he was testing me to turn it down. He kept saying that fear of pain will make it worse.

I LEGIT THINK I HAVE PTSD FROM MY PAIN EPISODES AND YOU THINK I CAN JUST STOP… WORRYING? Wtf is wrong with people. This woman doctor in the ER gave me a script for like 5 days because it was evident I had insane elevated blood pressure. Wanna guess what my blood pressure was when I woke up from anesthesia? It was 120/75 but dropped to 55/28, I was feeling like I was gonna throw up and pass out from the pain. I scared all the other patients in the OR because I was groaning and crying loudly in pain.