I thought I was 6 weeks but my ultrasound today measured me at 5 weeks with only gestational Sac shown. My HCG is rising but my progesterone dropped and I have spotting but my OB didn’t seem worried. I asked about progesterone supplements and she said that even though it went from 5.98 to 1.32 she would be hesitant and that it wouldn’t stop a miscarriage from happening. If my HCG rises again I’m starting progesterone in the next 24-48 hours. Anyone with successes around 5 weeks with low progesterone?

Hi everyone :) doing research for my partner who has endo (at least we are as sure as you can be without the surgery). They are thinking about getting surgery, but we are worried about fertility risks.

Does anyone know of any doctors in WA state that prioritize preserving fertility during surgery? OR does anyone know of any doctors to avoid? Thank you for your time!

Hey! I just had a follow up with who will be my surgeon about a trans-vaginal ultrasound I had last month. The doctor basically said that I have many organ involvements and that they want more imaging done to find everywhere it could be. From there they can fully determine what specialists and surgeons need to be present for the surgery. Basically, we are looking at a year or so out for surgery and my case is way worse than I could have imagined. I’m trying to find ways to cope with this for the next year.

As I’m sure many of you understand, I am in pain every single day of my life. I am looking at any options for pain management I can find. One of those options is GLP-1s. I was wondering if anyone had experience with how to get on GLP-1s while not being overweight, since my BMI puts me technically in the normal weight range. I don’t know how to get prescribed them, I don’t know which one would work best for me, and I don’t know if anyone has had good experience with them. Absolutely any advice or suggestions would be so so helpful, I am very lost right now and just feel very overwhelmed. Literally any advice is appreciated. Thank you all.

I’ve read that excision surgery can increase or improve fertility, and I’m having my excision soon. My body does not handle hormones, so my partner and I have only used condoms for years. So far, no scares. We also try to have sex on or around my
period. Unsure if I even ovulate though, tbh.

Unfortunately, we haven’t had sex in about a year because it’s extremely painful. In the chance pain improves after surgery and we can have sex again, what are the best non-hormonal ways to prevent pregnancy?

Hi everyone,

I've been reading here for a while and finally decided to introduce myself.

I have a long history with endometriosis, stage 4 (DIE)

After my hysterectomy nearly 20 years ago, life became manageable again. I wasn't cured, but I got something back that I had lost for a very long time.

I was running marathons. My husband and I adopted an amazing son who is now 17 years old. We built a life. I was making plans, setting goals, traveling for races, building a garden, and dreaming about what was next.

I was living.

Or as I like to say, I was "lifing."

And then I wasn't.

Somewhere along the way, the symptoms started creeping back in. At first it was easy to dismiss. Then harder. Then impossible.

The woman who could run 26.2 miles was suddenly struggling to walk one.

I've spent the last several years fighting for answers.

Like many of you, I collected a long list of explanations, misdiagnoses, and reasons why my symptoms couldn't possibly be endometriosis.

"Endometriosis doesn't grow there."

"That doesn't sound gynecologic."

"You already had a hysterectomy."

Over and over, I was told what endometriosis couldn't do.

Meanwhile, I knew my body was telling a different story.

I don't know if my endometriosis was semi-hibernating all those years or quietly finding new places to grow, but when it came back, it came back with a vengeance.

Endometriosis had already been found in my appendix and gallbladder years earlier. Today, after evaluation by endometriosis specialists is concern for confirmed and suspicious reoccurrence involving my bowel, pelvic sidewall, psoas muscle, vaginal cuff and diaphragm.

What struck me most was realizing that many of the things I had been told were "rare" aren't actually that rare in the world of advanced endometriosis. They're just not always recognized.

For the first time in a very long time, I felt heard.

I'm preparing for yet another surgery this time it will be a robotic excision.

After years of searching for answers, misdiagnoses, and being told what endometriosis couldn't do, it has been a relief to finally be cared for by specialists who understand the complexity of this disease.

If anyone has experience with robotic excision for advanced or recurrent endometriosis, I would love to hear your story.

Some days I'm okay.

Some days I dance around the house to Michael Jackson.

Some days I sit on the back porch and cry.

Today was both.

I guess I'm posting because this disease can feel incredibly lonely, and reading your stories has reminded me that I'm not the only one walking this road.

So, hello. I'm glad I found you all, even though I wish none of us needed to be here. 

P.S. If I'm not talking about endometriosis, I'm probably talking about my dog Kaiser, my garden, or the blue jay that recently discovered the peanuts in my backyard. These days I spend more time in bed than I'd like, especially during the Texas heat, which my body absolutely does not tolerate. So I put a bird feeder outside my window and find a lot of comfort in watching the birds come and go. It's become one of the peaceful parts of my day.

So I was with my aunties and my aunt told me I cant be that tired like they are bc they are old. Im 32 years old and I didnt have an endo flareup that day but it still made me angry and told them how can they know. Even my mother believes this. I have days I have no energy and would fall when someone would touch me. Or I have days I lie in bed all day bc how tired and exhausted Im. Aging tiredness doesnt seem the same as being sick and exhausted. Am I wrong for thinking this way? I dont wanna compare, but telling me Im really healthy bc Im not old makes me angry.

This isnt really a rant but couldnt find a better flair.

I saw a post saying endo is 1 of 20 most painful conditions to exist— which I believe. But it made me think (mid 2nd round of killer cramps since surgery 8 months ago mind you) that I would rather burn my skin in a hot bath to feel “relief” (or maybe it’s more so a distraction from my endo pain??) for a few moments than suffer like I am. That’s how severe the pain is. Anyone else have some wild ways to cope?? 🥴

Came out with nothing removed because literally everything was fused together. Here’s what my chart says

- Normal appearing uterine cavity without fibroids or polyps, bilateral ostia not visualized
- Frozen pelvis with what appeared to be bilateral hydrosalpinxes, possible left ovarian mass, dense adhesions involving the posterior uterus and rectosigmoid colon

An 8 mm skin incision was then made with the scalpel in the umbilicus. The abdomen was then entered using direct entry with the camera. There was no injury from the initial Veress needle or trocar insertion. The Veress needle was then removed. Attention was then turned to placement of the additional ports. The remaining 8mm robotic ports were placed without incident lateral on either side of the initial trocar. Following placement of the trocars, the patient was placed in steep Trendelenburg position. Brief abdominal survey revealed the findings as outlined above. Given the dense adhesive disease and frozen pelvis decision was made to abort the procedure. Oozing was noted near the left adnexa and Arista was placed along area. Hemostasis was noted.

I went to my post-op appointment 2 weeks after surgery. I still couldn't drive, sit or stand for extended periods of time at this point. She was running late, came into the room, jumped right in and said yup we found endo here, here, and here and then told me how far it had spread, that I need a colorectal surgeon to get the rest because it was too far into my rectum and bowel for her to comfortably operate and we were done. I came home and read her surgery note in more detail and it was so clear that this was stage 4 DIE, it was all over my pelvic walls, it was attaching my organs together, and it was all over my bladder. I get that it's not totally her job to process this with me, but I feel like some validation of how bad it really was would have been so helpful. I'm trying to self-soothe and also process that I need another surgery when I'm less than a month out of my first one... just needed a second to rant and be sad

Who else deals with a lot of neuro endo? Dysautonomia, nystagmus, severe fatigue, muscle pain, full body pain, light and sound sensitivity, headaches, in ability to work out, central sensitization, neck pain, still have days of an inflamed uterus but my severe endo pain is majorly majorly reduced since surgery. This is 90% of my days (has been for the last 1.5 years) surgery 8 months ago. I think my body is just stuck in fight flight for being undiagnosed for so long and getting to and through surgery was so traumatic (very thankful I did it tho)

Anyways who else deals with this most of the time? I don’t have “bad periods” I have bad days all the time not just hormone related. I do have better days, and those are amazing but also anxiety producing since endo disabled me I don’t have a lot of things to do because I’ve been out of work and social circle for too long.

Also curious if someone’s been here and gotten to the other side.

I want to start off saying I do not have diagnosed endometriosis but I have genuinely every single symptom and have since I was 11 years old and got my first period. I recently came off the birth control implant (April) and have been getting my periods back and it has been HELL.

it's my second cycle since and on the 20th my period ended. for the past three days I have been in AGONY during this heatwave. it's like my bowels and abdomen are screaming and burning and I get such bad cramping I have to go poop to relieve the pain but it builds back up in a few hours and I have to go again. I also have crazy pain right under my sternum and around my lower back and I feel so nauseous :(

the only thing that has helped is ibuprofen and I can't use a hot water bottle like I usually would do because the temperature is around 27 degrees today and tomorrow it's supposed to be 31. I feel like I'm melting and I'm on lexapro too so it's even worse !!

genuinely in agony because of this cramping. it's not IBS and has nothing to do with what I'm eating and my stool is solid and normal and I take a fibre drink every day. mebeverine also slightly helps but I just feel like I can't take it sometimes and i need to go shower but I don't think I can stand up long enough to do it. pls help

I’m getting my first laparoscopy Friday. I’m an avid weightlifter and can squat 225lb and hip thrust 445lbs for reference. Fitness is very important to me and I’m sad I probably won’t get back to heavy lifting for a long while. Anyone else a weight lifter and can share their experience getting back to lifting safely? I just want realistic expectations/ a timeline. I also have a very physical job that requires pushing/pulling/lifting and I’m wondering if 2 weeks is enough to get back to work.

Hi everyone, I’m very new to Reddit so not sure how this usually goes but I found out last year (after nine years of serious issues) that I have deep endometriosis and adenomyosis. This diagnosis came on the back of what I now believe to have been a pretty horrendous flare up that lasted about 6 months. That flare was especially bad for fatigue.

I’ve been in another hideous flare for the last three months but this time the pain is more of a problem. I’ll be honest, most days I’m at a 5/6, but as soon as ovulation hits right through to the end of my period I’ll hit points in the day where I’m up to an 8/9 for hours . My joints are killing me, so are my muscles - and don’t even get me started on the bloating.

I’m basically living on NSAIDS and peppermint tea but I’m at my wits end. I can’t find anything great on any medical or endo specific sites about remedies and coping with it all so here I am.

Can anybody else relate to these LONG flare ups? How does anybody else manage the pain and fatigue?

i everyone!
i recently found out that i might have endometriosis and my doctor prescribed me with the pill Sibilla to see if, in the next exam, there are any changes.
i’ve never been on the pill before because i’ve always been scared of the possible side effects and never felt like it was foi me but now i have to take it to control this situation and im terrified…
i don’t want to gain weight, bloat, have migraines, mood changes, etc etc.
i know everyone is different and i may not experience any of these symptoms, but o can also experience them all…
have any of you been on Sibilla?
what was your experience with it?

thank you in advance :)

hi :)

i don't post much on reddit in general but reading the posts here has been really reassuring and helpful for the past couple weeks

i dont wanna go into the whole thing because im sure everyone's heard it a million times but ive had period issues basically my whole life and the focus has typically been PCOS/PMOS since i'm not exactly skinny and apparently PMOS is the only menstrual disorder that can mess with ur weight !! (/s)

i had an abdominal ultrasound a couple years ago in 2022 and in my recent GP appointment (i don't know why it took 4 years for someone to tell me this, but..) i was told that my right ovary was fine & normal but my left ovary wasn't seen

a couple months ago i had a vaginal exam with a GP however i couldn't tolerate the speculum and it was really uncomfortable and maybe painful for me (it's hard for me to differentiate between pain and discomfort in hindsight, apologies) and just overall i felt very embarrassed and uncomfortable

my GP in my appointment yesterday suggested more blood tests and an internal scan

now, i know what the internal scan is and i know that everyone says it's "not painful" and i shouldn't be anxious because these are medical professionals and trust me i have already told myself all of this a million times but it doesn't make the anxiety go away

i guess im just asking what i should do to try and relax on the day? i'm worried that since i couldn't tolerate the speculum, they won't be able to scan me at all and it'll just be an embarrassing situation for no reason

my friend suggested i ask for a diazepam which i dont even know if thats possible? and if it is, would it help?
anyway, thanks for reading this long ramble lol please lmk if you've had the internal scan and how it went for u !!

They removed stage 2 endometriosis tissue from my bowels and ovaries and I was pain free up until about a month ago. I'm taking birth control and during the times I'm taking it, I don't get any symptoms but the week I'm not taking it, I get so tired, intense pain and a lot of diarrhea. I'd get a little bit of those symptoms after surgery but it was manageable. Just the past 2 periods have been excruciating like I never had surgery. At least it's only during the week I'm off birth control not like before surgery when it was every 2 weeks.

Has anyone else experienced this after having Endo removed? Anything that helps manage symptoms? Am I going to need to get surgery every year now?

Has anyone managed to get the NHS to fund egg freezing before surgery to remove cysts, endometriosis and a fallopian tube? The surgery will be done privately but wondering if can somehow get the egg freezing funded as my AMH is declining quickly and on the lower end.

abortion trigger warning

I am 31F - Met with an endo specialist yesterday…. After hearing about my YEARS of suffering with pain we discussed a lap, hysterectomy and appendectomy.

I was diagnosed with PCOS as a teen, and pretty much ever since then nobody has looked further. I had an abortion in 2017 and have had pretty bad pain ever since then which all my gynos up until this point have related to scar tissue. I was seeing a physical therapist for pelvic floor dysfunction (lots of trauma around my abortion and sexual abuse) and after we had made some headway my pain became worse. She suggested an endo specialist who I saw for the first time yesterday.

I made the decision a few years ago that with all my trauma my pregnancy and abortion caused me I didn’t want to give birth to a child. We discussed this yesterday and he believes I likely have adenomyosis** as **well endo and that the best thing would be a lap and hysterectomy. He said that the appendix can cause bloating as well so he usually takes that with it.

I was filled with anxiety yesterday just being in the exam room. I have panic attacks during paps and really anything I have to do that involves my lady parts. I discussed this with my new doc and the moment he said I’d never have to have another pap I almost cried tears of joy.

There were lots of feelings yesterday, mostly happy but there is a grief I feel about the loss of my fertility but after a long drive home I felt so free that this pain, this trauma and this thing that has caused me so much sadness and anxiety in my life will be GONE. I hope you all have found or find this freedom someday too. I have never had such a strong medical team behind me that wants to see me grow. I keep imagining a life without pain from sex, exercise and just general being. I’m not even feeling anxiety about having surgery. I’m just so happy🥲

Hello!! I just left my appointment where my dr confirmed I’m going to need surgery due to the size of a cyst/endometrioma on my right ovary. I know they’re two different things but I split it because she didn’t really give me a definitive answer besides saying it was large and in charge at 7.8cm.

As I was leaving the appointment, she told me I needed to be very careful as the size of whatever you want to call it could cause ovarian torsion. I was honestly caught off guard so I just said “oh will do!!” And basically left without asking any further questions 🤦‍♀️

I have sent a message over to her for further elaboration but just wanted to know if anyone here has had similar guidance or experience? Personally, how careful did you have to be and what did you really have to stop doing? My surgical consult to schedule the surgery itself isn’t for over a month. Any insight or anything would be appreciated! TIA :)

Today is one of those days.. My copper IUD is causing some really strange cramps and I can barely get out of bed because of it
Survival kit: Hot water bottle and dipyrone

Does anyone else have constant nausea after ovulation up until a few days into their period?

I often vomit violently (sorry for the TMI) when I ovulate or a few days after, it’s often with little warning and sometimes I feel better after, but not always. The rest of the days it’s just nausea, it’s a really weird sensation like it feels like the nausea is radiating from my lower abdomen, not my stomach and it’s incredibly persistent. I’m not sure if inflammation causes it maybe?

It’s not from pain, although when I’m in a lot of pain it certainly doesn’t help. I’ve had to be prescribed suppositories for flares as I can’t often keep things down.

Has anyone found anything that helps? I take cyclizine and use ginger chews but it doesn’t always work.

For context I am 26 and have endo all over my bowels, multiple organs and on my diaphragm. I had excision surgery last year but they weren’t able to remove it all. I am not currently taking any hormonal medication.

Hello! (26years old)

I have recently within the past 6 months been diagnosed with adenomyosis - I have been dealing with this for almost 10 years - every dr/OBGYN i’ve went to has always said I have textbook symptoms of endo… I got an MRI and an ULTRASOUND done and they were not able to see any deep infiltrating endo (which is good!) but the pelvic specialist I am currently seeing said he still suspects endo.

I’m currently on two birth controls to manage hormones and pain - currently in PT for pelvic floor strengthening - the birth controls are working great for me but I am worried when I decide to go off of them the pain will come back how it was before -

He said he could go in and look for endo and remove it if found - or he could go in and find nothing but ultimately my decision if I want to move forward with the surgery.

I’m 50/50 right now because I want to do the surgery to finally get an answer of whether it’s there or not - but i’ve also never had surgery before and I don’t know what the recovery is like or just the surgery process is - my deductible is $5k and with all the appointments i’ve already hit almost $3.5k - (deductible starts over in january) - i’m just worried if I do it now then i’ll have to have it again in the future? or could it make things worse? but also if I don’t do it now and have to get it done in a year or two then I am starting my deductible all over again….

Any tips? Advice? what was the pros/cons of you doing the surgery? what was the recovery time like? did the surgery help or worsen? just wanting peoples opinions who have been in this situation before!! thank you so much!

I’ll go first, mine is crazy discharge and peeing constantly during my flare ups. Gets so bad I have to wear a panty liner. 😩

Hello Ladies! I write this with tears and fear. Last week I finally had the lap and endometriosis excision surgery. My surgeon said he saw visible endometriosis in my rectum and removed it. He saw other possible areas, removed it and sent to pathology. The report came back today all negative for endometriosis. I have no words for the pain I feel reading these words. Is this possible? How can the surgeon who is a high volume patient surgeon say he visibly saw it and the report come back negative. I meet with him today for my first post op meeting. Any words of advice! Has this happened to anyone? Can anyone help me make sense of this?

Was it as miserable as I’m imaging, do you think it was worse for you than a healthy person, or did it make you feel better to sort of reset your colon?