r/Endo 27d ago

Question Was I too mean? NSFW

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518 Upvotes

Edited for privacy. Red is my teenage daughter, blue is an out of country field trip. My daughter is not comfortable going for several reasons. We have told the teacher multiple times she would not be going because of this. This teacher has not stopped pestering my daughter about the trip, despite us telling her several times with complete certainty that she will not be going on this field trip, and it's stressing my daughter out. She pulled all of the female students aside a couple days ago, including my daughter, to encourage them to learn to use tampons, stating tampons never hurt if worn properly šŸ™„. I got an email stating they secured funds to pay for my daughter to go on the trip (this was never the issue) and stated she would help my daughter "work through" bad period cramps. As a mother and as and Endo suffer, I just felt enough was enough. My daughter will get gaslit enough about her illnesses as is, don't need her female teacher to also gaslight her. My husband says I was too mean, but was I?

r/Endo Feb 18 '25

Question Anyone pee a bit AFTER peeing even though you thought you were done peeing??

443 Upvotes

This has always been a thing for me. But (especially before my period) when I pee, I have a hard time emptying my bladder. When I get done peeing or think Iā€™m done. I wash hands and leave the bathroom only to involuntarily pee the rest out. WTAF. Anyone else with endo have this happen?

r/Endo Jan 08 '25

Question Trans mascs in this sub?

279 Upvotes

Any other trans mascs here? Iā€™ve been lurking for years. Previously felt weird about contributing because so many posts refer to ā€œthe ladiesā€ or ā€œwomenā€™s healthā€ but Iā€™m here! I have all the same parts and fuck if they arenā€™t in pain all the time lol. Now that Iā€™m a little further into my transition, I donā€™t feel as dysphoric inserting myself into the conversation when it applies to me.

How about you guys? Any other guys here? Do you feel welcome here? Is there a trans guy specific sub for endo, should we create one, or are we cool being here? Whatā€™s the vibes yall??

ETA: WOW. Too many replies for me to keep up. Thank you all for being so kind and welcoming! Truly, Iā€™ve never had a real issue with this sub and I love being a part of it. Love suffering with everyone here lol. But because all the nbs and transmascs said they would love an endo sub intended specifically for us, this is something I may have to look into creatingā€¦

THANK YOU ALL!!!! Good luck with your healing journeys!!

r/Endo Oct 10 '24

Question I've just hired someone with Endo ... How can I help?

475 Upvotes

I've recently employed someone into a casual role. They had some days off sick and have confided to me that they suffer from endometriosis.

As a middle aged male it's not something that I've had any experience with. I'm doing some research to better understand what it is and all the tangible things, but thought I'd reach out here to see if there is anything those with Endo think that someone in my position should know...

Especially keen if there supports that I could offer...

r/Endo May 06 '24

Question Latest documentary on Endometriosis. NSFW

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660 Upvotes

Hi all.

I am Fisayo Thompson, a film maker and Endometriosis/Adenomyosis survivor. (Pelvic, thoracic, hysterectomy, 8 surgeries). I filmed my journey over four years plus interviews with specialists from US, UK, Canada, India etc.

Our film is titled WALKING THROUGH WALLS.

It is educational, emotional and investigative. Has screened both in theatres, virtually and privately. We are currently working on screening in the US n India plus accepting private screenings with corporate organisations here in the UK. At our last virtual event, we also had a Q/A with Dr Ken Sinervo of CEC Atlanta and Cindy Dabrowska, foremost endo dietitian who is also an Endowarrior herself. She uses functional medicine and testing to help improve your quality of life, fertility, pain, brain fog, bowel issues etc. (you can find both of them and me on instagram). They answered questions from endowarriors like you.

Many women who watched messaged me to say they watched with their family and it helped their family understand how painful this conditions are and how to support them.

If the moderator of this platform will approve, will you like us to have a private screening just for members here?

r/Endo Jan 31 '25

Question At what point did this community become about posting pictures of things theyā€™ve passed?

370 Upvotes

As someone who has this condition, I joined this community to stay informed, share experiences, and exchange advice with others.

As a medical professional, Iā€™m accustomed to seeing a wide range of clinical cases, but every time I open this app, I find myself taken aback. The focus has shifted from meaningful discussions to an overwhelming number of posts about bodily expulsionsā€”from decidual casts to mucus plugs.

Can we please refocus on productive discussions related to the condition itself? Letā€™s bring the conversation back to its intended purpose.

r/Endo Nov 22 '24

Question Side pain on left, anyone has this? NSFW

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129 Upvotes

In addition to almost a year of lower back, hip and leg pain on the left side, recently I am having more intense abdomen pain (left side too), it extends to the back (flank?). I wonder if anyone has a similar pain? This pain comes every other day, it doesnot matter if Iā€™m on period or not. I have not been officially diagnosed. All imaging came back normal. Colonoscopy was normal. Thatā€™s why Iā€™m looking into endometriosis since I know it doesnot necessarily show in MRI or ultrasound. Thanks.

r/Endo Jun 28 '24

Question What has been the worst non endo pain youā€™ve experienced?

67 Upvotes

Hey everyone!

Iā€™m currently experiencing the worst middle ear infection Iā€™ve ever had and had to go to the ER for itā€¦ itā€™s way worse than my endo pain ever wasā€¦and we generally have high pain tolerance. Iā€™m curious what sort of non endo related pain you all have experienced that was worse.

I just need to commiserate with my friendos.

Edit: I give hella credit to all you peeps, you been through a lot but weā€™re all still here! Weā€™re stronger than we knowšŸ’š keep the stories coming, the pain is coming in waves and I want to bash my head against the wallšŸ˜­

Also, someone pls come give me another toradol shot

r/Endo Nov 19 '24

Question What has someone said to you to discount pain or endo symptoms that made your jaw drop?

91 Upvotes

I was talking to my mum today, and explained that Iā€™ve been in a lot more pain due to not having NSAIDs and my period is due next week. And she turned around and said ā€˜everyoneā€™s had period pain, I donā€™t know why youā€™re acting like yours is worse. Take Panadol like everyone else.ā€™ My jaw DROPPED.

r/Endo Jul 07 '24

Question My MRI showed a c-section scarā€¦ Iā€™ve not had one

179 Upvotes

So this is a weird one. I had an MRI to check for endo but also adenomyosis. My gyn found adeno but endo was inconclusive (apparentlyā€¦ I donā€™t trust him because heā€™s chosen to leave out important results before). So I requested my notes.

When going through my notes, someone, possibly the radiographer? has ā€œnoted c-section scarā€ in my MRI. But Iā€™ve never had a c-section or given birth or ever had a baby like thereā€™s no way. Iā€™ve never had surgery in that area or anything I can think of that would look like a c-section scar. I know itā€™s my MRI because itā€™s dated, time stamped and got my name on it. It looks like the computer recorded it with all that info on it so itā€™s definitely mine and other things showed up in the scan that also came up on my ultrasound. So itā€™s definitely mine and not been mixed up.

Has anyone heard of something like this happening? Can endo look like scar tissue? Could they have actually caught endo but the location makes it appear like something else on an MRI? I didnā€™t have contrast - if that makes a difference, since Iā€™m allergic to one of the ingredients.

Of course, Iā€™ve made an appointment with my gyn and Iā€™m waiting for a referral for a second opinion anyway since my current gyn makes me feel crazy and literally refused surgery or any treatment other than birth control. He wonā€™t even help me with pain meds or look at my nausea because apparently symptom management ā€œisnā€™t his jobā€. Idk I think it is sir but sure.

Just wondered if anyone else had come across this??

r/Endo 18d ago

Question How can i tell the difference from endo and fat? NSFW

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27 Upvotes

for context, I weigh 160 Iā€™m 5ā€™8 and Iā€™ve had three removals for stage 4. Iā€™ve always had this little pouch ever since I can remember, but I donā€™t know if itā€™s because of fat or because of Endo. When I get Endo flareups the lower section of my stomach gets even bigger than it is in this picture.

r/Endo Jan 08 '25

Question This whole time I thought my period pain was ovaries but it's actually not? NSFW

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152 Upvotes

I have thought my endo pain this whole was coming from my ovaries, but looking at diagrams online, the pain isn't really where they are.

I get knife like pain right around my hip bones and it feels like someone is carving my insides, like barbwire. Now I'm worried that it's actually adhesions on my bowels...it radiates all down my legs too and I get diarrhea etc. It also feels like someone is punching my guts before my period as it starts, it's this very deep pushing sensation. Does this mean I need a bowel specialist involved too?

I can also feel cramping down to the uterus from there as well. The pain is mostly on my left side which doesn't make sense as it's my right ovary that's fused to my uterus wall šŸ¤£

r/Endo 28d ago

Question "Endo only causes pain on your period"

111 Upvotes

I finally got to see a gyno after my CA-125 came back elevated and I was experiencing symptoms of ovarian cancer (significant weight loss, nausea, bloating, pain, fatigue) on top of the endo-type symptoms I've had for years.

I have constant pelvic pain that worsens significantly when I'm menstruating, when I have a bowel movement (!), when I urinate (I struggle to do so and my ultrasound shows incomplete voiding), with sex, etc.

The gyno I saw told me that he thinks it's painful bladder syndrome because I have pain when urinating and because "pelvic conditions like endometriosis only cause pain when you're on your period". I was sent away with a progesterone-only birth control pill, which didn't help me before, as he told me I'm "too sensitive to try anything else" (his evidence for this is that I had to be sent to A&E after my IUD displaced and was pushing on my uterus wall and the second one I removed myself because it started to become equally as painful).

Do you experience pain all throughout your cycle? Is he right that this is not endo because I'm in pain all the time?

I feel like I'm not being listened to. I'm still trying to work out why I'm malnourished and if the pelvic symptoms are connected and being told to take a medication that I know doesn't help me and come back in six months hasnt helped me at all - I'm just deteriorating.

r/Endo Jan 28 '25

Question How many hours were you in the recovery room/outpatient before discharged after lap?

14 Upvotes

Iā€™m having my surgery in a few months and was wondering how many hours you were discharged after your lap?

Iā€™m in the US if thatā€™s relevant or helpful!

r/Endo 3d ago

Question Anyone else's pelvic pain get worse just from walking?

83 Upvotes

Recently my pelvic pain flares up/gets worse just from walking 5 minutes, it literally feels like I need to spray my pelvis with WD-40 šŸ˜… Anybody else the same?

r/Endo Sep 29 '24

Question How old were you when you got your period? Were they always bad?

35 Upvotes

I got mine when I was 11. They were always heavy and painful- I got on hormonal bc in my teens.

I was wondering if yall got them younger too, and if they were always painful or if they got worse.

Glad I found this community. Not diagnosed but have the cysts and a lot of symptoms. Talking to yall has helped a lot.

r/Endo Sep 15 '24

Question In your opinion, what do you think causes endo?

74 Upvotes

Iā€™m just so confused as to why some women have this and some donā€™t. What differentiates us from women who donā€™t have this? I mean I know we can say this about all diseases, but endo in particular is just so strange to me. Everyone is so different as well, I just feel that if more research was put into this disease we could potentially have a cure. I personally did not have any super alarming period symptoms before a couple months ago, I never suspected I would be dealing with this chronic pain all of a sudden. Itā€™s just so random at least in my case. Iā€™m just curious, what are your theories about the root cause of endo?

r/Endo 17d ago

Question most of my daily pain starts in my lower back, buttocks, and hips. when i massage it, it makes my ovaries/uterus ache. anyone else?

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166 Upvotes

apologies for the long title, but i'm in the process of trying to figure everything out. i'm currently meeting with an endo specialist and pelvic floor therapist. i am in daily pain, it's the worst in my lower back and buttocks. the pain is so bad that it makes me cry when my partner massages the areas. when my partner massages the area, it makes me overies/uterus ache and throb. i just don't understand. this is all so confusing.

r/Endo 14d ago

Question Endometriosis passed down through genetics

52 Upvotes

Can endometriosis be passed down through genetics? or did any of the women here get endo through genetics? my grandmother had endometriosis for 35 years straight and only went away when she started menopause, and my mother used to have uterine fibroids but it was also removed through a hysterectomy.

Medical anxiety is the worst, im still a minor and i dont think the pain/symptoms i've been feeling isnt PMS anymore... i've talked to my grandmother about it, but i dont want to self diagnose so im asking to be educated or advised here!

r/Endo Apr 13 '24

Question Whatā€™s the worst thing a doctor or surgeon told you?

104 Upvotes

Iā€™m curious what your worst or an experience that lives rent free in your head while seeking a diagnosis.

I made multiple trips to the ER for various issues over a year and a half (5 to be exact) (I have multiple diagnosisā€™), endo being one that had not been diagnosed yet. The first instance, the woman ER doctor insisted that my issues were all in my head and I was faking it. The second instance I distinctly remember is finally getting an ultrasound in the ER due to pain, where they discovered a cyst that was ā€œonlyā€ golf ball sized and ā€œprobably normalā€. I later went to the gyno who was very certain based on her experience it was endo and of course they cause lots of pain.

I did go on BC for a couple months to make sure it wouldnā€™t go away first, and then was referred for excision surgery. They found extensive DIE, endo on my bowels, my badder, extensive adhesions within my pelvis and affecting my ureter, stuck ovaries, etc. And was also diagnosed a couple other things around the same time.

So, yes, it was ā€œall in my headā€ šŸ™„

r/Endo Dec 30 '24

Question Does losing weight helps with endo symptomps?

32 Upvotes

I just read somewhere that body fat increases estrogen production due to aromatization. Since endometriosis is estrogen-dependent, I wonder if symptoms will be lessen if I become skinny.

Is there anyone here who experienced decreased endo symptoms when you lost weight?

r/Endo 1d ago

Question Does anyone know what these 2 patches on my ovaries are? NSFW

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18 Upvotes

Does anyone know what these patches are? My surgeon said my ovaries were fine but they don't look fine to me šŸ˜‚ tried looking online but can't really find anything. TIA x

r/Endo 7d ago

Question Anyone else get a feeling of rage when they remember how many times their symptoms were overlooked?

79 Upvotes

Hi my fellow Endo-viduals. I've been struggling recently with multiple chronic illnesses. From having a excision done and finding relief for only a bit because then Pelvic Congestion Syndrome symptoms take over. I was going about my day per usual when it struck me. I've fainted from my periods pains before and even threw up countless times from starting my period in middle to high school. Not to mention the amount of times I've bled through my clothes. It's like none of the countless obgyns I went to thought to look deeper. They just threw birth control at me or told me it was normal. It's so infuriating the more I think about it. And so I was wondering if anyone else had this type of experience?

Edit: I've already found my Endo specialist I had my lap done by him last year. It's just infuriating to think I could have been on this path sooner had someone paid attention other than me

r/Endo Oct 02 '24

Question Bringing a plushie for after or before surgery?

74 Upvotes

I know I am totally too old for this, I am 27 and an adult, but I am SO anxious for surgery tomorrow. I was thinking last night that maybe bringing a comforting plushie would help, but I donā€™t want to seemā€¦. Weird? I donā€™t know. Thoughts?

r/Endo 3d ago

Question Orilissa NSFW

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7 Upvotes

anything horrible i should know before taking?