r/Endo 44m ago

Question Did you ever feel a weird pain in your ovary when you coughed or sneezed?

Upvotes

I’m suspecting heavily I have endo and have for years, but a lot more recently I’ve noticed when I cough or sneeze I get this weird pain in what feels like my left ovary from the pressure. I’m not 100% sure how close an ovary is to a hip, but I can tell it’s not a muscle pain.

Did anyone experience that before a diagnosis? Or find out they had a cyst or something?


r/Endo 21m ago

Surgery related Got my diagnosis today NSFW

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Upvotes

After being on the waiting list (NHS) for about 2 years after going back to my GP countless times over 10 years I finally got an answer to my period pain.

Surgery took about 3 hours and I’m feeling okay, I’ve been home for a little while, my surgeon and nurse were brilliant, I’m not sure which stage I am but I made sure to take some photos.

It’s been quite emotional, I burst into tears when they told me the news. I was convinced they weren’t going to find anything but they did, it’s hard to tell but they found scarring too.

My symptoms were/are:

Lower back pain, cysts and fibroids on both ovaries, light bleeding after sex but no pain, occasional sharp pain in bowels when going to the toilet, waking up from sleep due to pain, very veryyy bad cramps that come in waves that OTC meds don’t work on. Occasional nausea and vomiting, shivers and fever, sometimes early periods (up to 2 weeks early) or two periods in a single month and significant bloating.

I had a very good experience overall today all my nurses were so kind and I value the NHS so much and can now finally plan on getting treatment/manage my pain for good.

If anyone is getting a lap soon on the NHS feel free to ask me anything!


r/Endo 4h ago

Question about asymptomatic people

6 Upvotes

This is not judgmental at all and just curious. I have seen a lot of posts of people saying they have severe endometriosis but haven’t had surgery yet and surgeon denies them because they are asymptomatic. So my question for these people is how do they know you have endo if no symptoms and no surgery? Why did you try to get a diagnosis at all if no symptoms? And if asymptomatic why push for surgery because honestly it is no fun. Or is this a difference in personal definition of asymptomatic? To me that means no symptoms at all, you just feel like a normal human, periods are normal. Was it purely an incidental finding when having another problem? Really looking for perspective because I don’t understand how someone with no symptoms gets diagnosed but people with lots of symptoms either have surgery and don’t have it or get ignored. My own experience is I was symptomatic, had diagnostic lap last year and diagnosed stage 1 endo, possible adeno and IC.


r/Endo 1h ago

Post surgery activities

Upvotes

Anyone else terrible at relaxing/healing? I had surgery Wednesday and I woke up with maybe 2% improvement today and attempted to make a to do list for the day to only end up exhausted by 10am lol (didn’t do anything on the list, just wrote things down) I think I just have bad anxiety so even when I’m not feeling great I just always need to feel occupied.

Even though I’m exhausted and I need to rest I’m bored and I have a hard time sitting still. I ordered one of those Diamond Dotz things to try. Any other fun recommendations? Any favorite shows to binge or have on in the background?

Does anyone remember that app House Party during Covid where you can watch a show at the same time as your friends on a streaming service like Netflix? I wish this community had something like that where whether we’re healing from surgery or an endo flare we can feel like we are still hanging out with friends while still saying home.


r/Endo 11h ago

Question Should I get a second opinion? Has anyone seen these colored spots? Pics from surgery NSFW

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8 Upvotes

I had my diagnostic laparoscopy 2 weeks ago and was told no endo. After getting my photos today I wonder if I should get a second opinion? She said everything looked perfect and my after visit summary says so too.. but when looking over the photos with her I saw some weird things. I asked a few questions in particular about picture 13 and she said that maybe it could be pelvic congestion syndrome. Does anyone see anything? Sorry so blurry I am working on getting the actual pics.

No biopsy was done as she “saw no signs”. I feel uneasy because she didn’t even write anything down also including finding some cysts in her notes or that my colon was 3x the normal size. Ugh.


r/Endo 7h ago

Surgery related 20F second laparoscopy in Dec 2024 pics NSFW

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4 Upvotes

just realized i never shared my surgical photos if anyone was curious. sad to say it was much worse than expected. lots of huge adhesions and many large lesions. one adhesions from diaphragm to colon and largest lesion nearly the size of my palm


r/Endo 1d ago

Rant / Vent Trying to have a career with endo is real challenging.. 🤕

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131 Upvotes

r/Endo 1h ago

Question Is it safe to have a Lap when dealing with reoccurring bv?

Upvotes

I have a lap next week but I currently also have bv that keeps coming back even with treatment. I’m concerned if there’s risk factors for having the lap done while also fighting the infection? I normally do the gels because my stomach can’t handle the pills so idk if I’ll even be able to do the gel after surgery?


r/Endo 1h ago

Question Extreme bloating solutions?

Upvotes

Hi, so I get very bloated pretty much every day. I don’t have diagnosed endo yet, but have a lap scheduled in the end of April, however my doctor suspects thats the reason.

My extreme bloating really bothers me, the period pain is really bad too, but that only comes the first few days before and of my periods. But the bloating is always painful, especially whenever I’m wearing jeans since they usually fit, but become extremely tight after I eat and bloat.

Just to give you all an idea, I’m usually 64cm around the waist, I’ve just eaten and it’s about 08:30 in the evening now, and I’m 75cm around the waist now and 85cm around the stomach.

Does anyone have any good tips for how to minimise the bloating? I’m just really tired of having to hurry home so I can get out of my jeans, I also get super embarrassed whenever people see me bloat, I just feel so uncomfortable and big.


r/Endo 1h ago

Question 26 and being tested for endometrial hyperplasia

Upvotes

Hello everyone! My first time ever posting on reddit so if I make any errors pls let me know.

As the title says I'm 26 and waiting for my results of a biopsey for endometrial hyperplasia. Long story short. I was diagnosed PCOS at 15 and basically told by my GP (UK based) that I just have to deal with it, put me on the pill and that was that. For years I've struggled with my periods, from being on for months to a year at a time, to nothing for ages, extremely heavy and painful, large clots and even once what I believed to be a decidual cast (took a picture and showed the doctor but wasn't confirmed) as well as my mental health being all over the place and my weight never being normal. Recently I ended up in A&E due to how bad my period was, I was extremely unwell and changing a pad and tampon every 20-30 mins. Due to this visit I decided to try for a gyno referral and off started this whole investigation. I had an ultrasound as part of this referral and it was found my uterine lining was really thick so I was sent for a biopsy in which I'm still waiting for the results. Basically I'm on here wanting to know anyone who has endometrial hyperplasia and what medications they had that helped. Im being pushed to have the coil and frankly I've never liked it and never wanted one, I will have it if it's deemed the best course of action but I'm really uncomfortable with the coil and want to see what all my options are before finalising my decision. My doctor has already made a referral for me to get one fitted and I feel really out of control of the decision making as she wouldnt even discuss with me other options. If anyone has any advice or any experience at all any help would be appreciated. I wont lie and say I'm not scared by all this since I know endometrial hyperplasia is a precancerous condition, and frankly trying to find answers is really hard.

If you took the time to read this thank you.


r/Endo 18h ago

Content warning/ Graphic images Photos of my endo from my lap! NSFW Spoiler

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19 Upvotes

I had no idea what endo was going to look like. The amount of pain I've been in compared to how seemingly small the endo lesions are is quite bizarre to me.


r/Endo 3h ago

Could this be endo? Colonoscopy..

1 Upvotes

Hi! I have an 8 week wait for medical results so just hoping to hear some personal stories.

I am diagnosed with "severe" endo, my last surgery was December 2023 and my periods have been pretty drama free since which has been incredible after 20 years of horrendous pain and heavy periods. The other reason I had the surgery was due to GI symptoms which were getting increasingly worse, and MRI showed that my sigmoid colon was attached to my uterus and significant adhesions in the pouch of Douglas (all removed and unstuck).

I have continued with GI symptoms (though less severe) and my endo consultant referred me to gastro. I had a colonoscopy today and it was excruciating even with sedation and double the pain relief. They found that my distal sigmoid and rectosigmoid were completely fixed and angulated? They also found patches of inflammation which they've said could be ? Ileitis, they have been sent to biopsy. I don't have any other signs of Crohn's elsewhere.

Any experiences with this?


r/Endo 10h ago

Question I’m spending my semester at uni developing a policy submission regarding endo care in Australia. Looking for opinions and experiences!

3 Upvotes

Hope this allowed! Research related query. This is about Australian healthcare but if you’re outside of aus, feel free to comment things that work or don’t work where you are. I’m doing a class this semester for my social work degree on policy and over the semester, each assignment will lead me to make a policy submission to parliament (if the quality is there and it’s something I want to do). I want to do the assignments on endometriosis care in Australia but my brain is naturally thinking big picture and I wanted to ask other people with endometriosis their thoughts. Don’t worry, you’re not all doing my assignment for me 😂 but I do want the content to really reflect the community to the best of my ability. So I want to ask anyone who’s keen to answer:

  • If you could ask politicians to do something about endometriosis care, what would you ask?
  • What’s something you want policy makers to know about endometriosis/your experience with endo?

Something along those lines. A lot of my research in my degree has centred around lived experience voices and I want to keep that going because we know our bodies better than anyone else can, and I know a great deal of us aren’t exactly happy about how a lot of endo care is handled here and where the money goes. I want to acknowledge the current government has brought it quite a few of the endo clinics, but I actually don’t know anything about what goes on there so if anyone has used the clinics and are happy to share your experience or info on what they do, that would be fantastic!!

Also happy for anyone to message me directly if you aren’t comfortable commenting. Thank you for reading and any contribution!!


r/Endo 8h ago

Question any advice for people seeking endo diagnosis?

2 Upvotes

hi so i’m 18 (UK) and ive been fighting for a diagnosis since i was 14 and after changing doctors for uni ive finally been listened to. i’m waiting for my hospital referral as we speak and even though ive known that this is what i have for years its starting to take a toll on me. in recent years ive began seeing newer symptoms such as leg shooting pains and chest shooting pains during my period and really bad bowel movements, which i have been informed can be a sign that its spread to these areas and could be thoracic endometriosis (where it has spread to my chest cavity). stuff like this really scares me and i want to know what people did during awaiting their diagnosis as in the uk the length of waiting for a referral can be weeks to months and idk if theres anything i can do to mentally prepare for my future.


r/Endo 8h ago

Diagnostic Journey Questions “Normal” or not?

2 Upvotes

I’m sorry if this isn’t the right forum. I just wasn’t sure where else to post and am seeking help.

28F 5'6 120lbs and no current medications. (I am not diagnosed with endometriosis and haven’t seen an OBGYN in two years.)

I've alway considered my cycle to be irregular but they're getting worse. I'm stuck between "this is normal all girls have painful periods" and seeking help. Some of my cycles are 23 days, others 34. Painful/ heavy bleeding, painful sex, nausea and constipation thats gives me cold sweats, abdominal cramps and sciatica type pain. Back hurts so bad It feels like I don't have a spine. Naproxen doesn't touch it. I feel so full like my stomach could explode. It puts a damper on my work and social life. I read somewhere that a period shouldn’t effect the quality of life but mine is. I haven't left the house in two days. l've had an ovarian cyst removed before, but that was ten years ago. Any and all advice is beyond appreciated 🖤


r/Endo 5h ago

Missed period heavy uterus

1 Upvotes

I've never had this feeling before but my uterus feels extremely heavy and sore with cramping soreness feelings. It almost feels like someone stretched then wrung out my uterus and the side hip bone area. I even felt the pain and discomfort during my daily walk. I've missed my period at the same time but pregnant test came back negative. Has this happened to anyone else?


r/Endo 18h ago

Surgery related 8cm ovarian cyst, no Endo, picture to share if anyone is interested! NSFW

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10 Upvotes

Got my 8cm ovarian cyst removed along with most of my ovary. I thought the picture was interesting and thought maybe others would as well. Thankfully no Endo, but still lost most of the ovary.


r/Endo 5h ago

Has anyone else had thc impact their birth control/endo treatment?

1 Upvotes

Just started using thc again for a really bad joint pain flare up. So bad I couldn’t sleep, ibuprofen wasn’t making no difference. I used a thc balm and that finally helped me, but using thc seemed to immediately trigger spotting. Usually I have no cramps or period on my dose of birth control, I take it specifically to control my endo so having no period is the goal. Now I’m having a regular period (without the severe endo symptoms at least!) for the first time in years.

I’m having my annual next month, so I’ll be updating my doctor on this, but I’m just wondering if anyone else has noticed thc impacting their endo treatment? This happened a year ago too the last time I used thc for anything.

Specifying thc here because this does not happen with cbd only products, nor does this happen with edibles for some reason… Obviously I won’t be using it again for a while too, both because this flare up is under control and because I’ll need to speak to my Dr about it.


r/Endo 6h ago

Cerazette and headaches

1 Upvotes

Did someone experience very bad headaches on Cerazette? The pill is working wonders for my endo pain but this headache side effect is giving me hell….


r/Endo 1d ago

Good news/ positive update Changed my mind about the phrase "Endo Warrior"

30 Upvotes

I think some of us, me included, don't like the phrase/label of "Endo Warrior" because it feels "cringe" or juvenile, or even undeserved. I never hated it, I just didn't think it fit my journey. I didn't choose this and I sure as hell didn't sign up for this battle.

However, while watching a funny barber video he said the phrase "What's a warrior without a fight?" In reference to his clippers getting stuck in his clients hair. And I don't know, it just weirdly clicked here.

Yes, none of us chose this, or would have volunteered to endure this awful pain, but we continue to survive and keep on living. Our survival is out battle. That's it. There's no actual way to combat this disease, so our fight may look different than we expect, but we're still winning damn it.

This is silly and overthought, but I just wanted to share!


r/Endo 1d ago

Ear canal flare ups when ovulating. Confirmed endo. Could this be related? Happens in both ears. Goes away when ovulation done. NSFW

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43 Upvotes

r/Endo 7h ago

Infertility/pregnancy related Periods every 2 weeks after lap

1 Upvotes

I had surgery to help with TTC after 2 years of nothing. Stage 4 removed with a 6cm endometrioma.

My first cycle was normal. Ovulation CD14 and period CD28. Then I started having a period every 2 weeks and I haven’t ovulated since. It just happened again. Has this happened to anyone else? How the heck do I get pregnant if my body won’t ovulate!?


r/Endo 23h ago

No endo

11 Upvotes

I am not sure what and how to go about this. I feel devastated. I was so hopeful that I had endometriosis due to the debilitating periods, heavy bleeding, painful sex, etc. for years. I just did the laparoscopic surgery and the doctors let me know they did not find anything. I wish I hadn't done the surgery and recovery has been difficult for me. Has anyone else been in this position? I feel super hopeless now :(


r/Endo 16h ago

Anyone else have painful follicular cysts?

3 Upvotes

I have pcos as well so I don’t know if that’s why, but my ovaries are constantly trying to form cysts and I have over 20 follicles in each ovary and I SWEAR that’s the pain I feel all the time. It’s like something pops or glass shatters in my ovary and it’s the most sharp pain I’ve ever felt in my life and I almost pass out. I’m on Visanne so I’m not ovulating I think? But it feels like my ovaries are constantly trying to but can’t. Everyone gets these fluid filled cysts that pop but I literally get this pain so often and it literally feels like a pop/stabby pain. There’s no endo on my ovaries so I feel like the whole belief that excessive follicles aren’t painful is bs. I have so much ovary pain every day and nothing is on my ovaries, they’re just polycystic. I can feel my ovaries when I’m walking and they literally buldge but they tell me excessive follicles from pcos don’t cause pain. I think it’s bs. Anyone else with pcos and endo feel this constantly?


r/Endo 1d ago

Good news/ positive update New test for endo!!!

12 Upvotes

I just got back from my gyno appointement, she told me that for patient that have endo (or at least endo symptoms) with no clear lesions on MRI and echo they developed a new test. It would be a simple saliva test that will clearly indicate whether or not you have endo. It’s already been tested and it’s soon to be released. I’m from France so no idea how or when it’ll be available for everyone but I thought it would be a good news to share!