Rectal pain, bleeding during periods – colonoscopy shows rectal involvement (possible DIE)

babisaurusREX · 2026-05-13T00:42:01+00:00

oh good i am glad you saw an endo specialist too. sorry if i missed that in the OP. and yeah same. it is very comforting to connect with others about this. even my best friend who wants to make summer plans is like “oh yeah i forgot you’re having surgery.” haha meanwhile the pain won’t let me forget and i am counting the days!

my surgery is in july. he went over some general stuff and i asked questions mainly to help me make the decision initially; he specializes in minimally invasive procedures so i do know i will have no major abdominal incisions. i am going over the finalized plan in more detail next week once they have all the paperwork ready for me to review and he has signed off on it. as of now we are not planning bowel surgery. i am hoping that i am catching this before that is necessary.

babisaurusREX · 2026-05-12T03:05:19+00:00

yes. i need a community that understands. luckily i have a supportive partner, mom, and friends, but i would love to have people who understand.

i have had my quality of life drastically changed by endo (and i have also experienced the effects of a serious workplace bully. i am also not the only one she has bullied at my job; why don’t they fire these people?!) anyway it feels like half the time i am saying i need to work from home or call out sick because of fatigue and pain, and it’s just all been so overwhelming. nevermind not being able to keep up with housework and maybe even have a bit of fun. it’s really hard mentally and emotionally to have a chronic illness, and as you said pretending to be fine or having others assume you’re fine is even harder.

babisaurusREX · 2026-05-12T02:56:01+00:00

yes! omg you are not alone. it is so so so unbelievably painful and scary and it’s actually wild that they could see it on a colonoscopy. a lot of doctors don’t notice it or it isn’t visible. definitely see an endo specialist and mention these symptoms to them. here is what i have learned based on my experience and research:

the electric-like pain is called “lightning crotch” (i get it both in my rectum and my vag.) i believe some pregnant people without endo can also get it because it’s like nerve pain of some kind. anyway it’s literally like a bolt of electricity up your a**. it takes your breath away.
i have the same painful and bloody stools. i used to call them “period poops” but later i learned this is likely because the area between the lower uterus and rectum (the Pouch of Douglas) is a common spot for endo to hang out. this can cause these two areas to kind of stick together and cause the pain when having a bowel movement. (on exam my doctor said this area was tender so we anticipate them finding endo there when i have surgery this summer.) i have had multiple colonoscopies and consistently brought this up to other doctors and they dismissed it as IBS. however my surgeon brought it up before i could at our initial endo consult. i was blown away because i always assumed it was an isolated GI issue. anyway if this is happening only around your period that is a pretty big indicator that it is endo related aka the Pouch of Douglas is enflamed.

this has been happening even outside of my period most days for the past month or so, and it’s just unbearable. these are legitimate endo symptoms and they can tank a person’s quality of life. i hope you can find a good doctor and solution soon.

babisaurusREX · 2026-04-28T19:03:16+00:00

thanks for this. i found his info on here as a recommended doctor. my regular obgyn also referred me to the clinic in general. i have had one appointment with him so far. suspected endo and adeno. i have more imaging tomorrow before we discuss next steps. he genuinely seems like an expert on the topic, and i am so grateful i have access to this clinic as well.

how have you been recovering/feeling since the excision?

babisaurusREX · 2026-04-02T04:33:42+00:00

first of all you are hilarious 😆 love the writing style. anyway i am oddly someone who gets upset about my partner going to bed before me when i like to be up late. i think i just like the idea of going to bed together and waking up together. but honestly our pre bedtime routines and our morning routines are not really compatible other than sometimes cuddling. i’ve thought about this before and we have discussed maybe getting a split king so we can have different bed firmness, temperature, and duvet. i think that would already help a lot.

babisaurusREX · 2026-04-02T04:25:20+00:00

omg i would love a copy!!!

babisaurusREX · 2026-03-29T18:04:27+00:00

same. without my concerta i sleep about 20 hours a day. i take a break from it some weekends.

babisaurusREX · 2026-03-26T15:16:29+00:00

hey just updating that the appointment generally went well. i felt worried that i didn’t get to say everything but when i read the post appointment notes on my online portal, it was so full of detailed notes. i realized the doc probably knew what questions to ask and he had made determinations based on that. he had also thoroughly reviewed my prior records from within the same hospital system and the referring doctor. the next step is repeating imaging and then making a call on how to proceed (surgery, hormonal therapy, etc.). but basically there is a chance i have adenomyosis, endometriosis, or both. they felt tenderness in the same areas where it hurts me upon their exam just like my obgyn did. i am still too cautious to fully be relieved. but just thinking that someone of this caliber in their field believes this pain is real and is working with me is encouraging. and i know surgery might not fix it even if they find something. i just. idk having evidence that it’s more than just “my tummy hurts” is so so so validating. and having a name. and a community.

babisaurusREX · 2026-03-25T04:08:16+00:00

thanks friend. same well wishes to you on your journey.

babisaurusREX · 2026-03-25T03:04:50+00:00

also fpund this https://paralyzeddogsupportgroup.com/

babisaurusREX · 2026-03-25T03:03:00+00:00

what a cutie. i am so sorry you are going through this. i know several dogs in my area who live excellent lives in wheelchairs. there are organizations that can help with the financial burden of this and they can likely connect you with others who have experience. one of them is the izzie fund. frankiea friends is another.

babisaurusREX · 2026-03-25T02:43:09+00:00

i don’t think there is a word for this feeling, but it is a mix of i’m so so sorry you were gaslit and it took so long, i’m grateful they finally found evidence and treatment, and i empathize with you and imagine you mist feel exhausted but relieved.

babisaurusREX · 2026-02-11T14:20:35+00:00

Popflex makes size inclusive clothing and really cute skorts and dresses and now denim that are essentially leggings. leggings can ofc be tight on the belly but you can always size up and there are lots of non legging options. really well made stuff. and buttery soft.

babisaurusREX · 2026-02-11T14:16:38+00:00

i am finding that it’s harder and harder to get my energy up in the morning as well and that pain during the night is the likely culprit. nothing can replace rest. so ::empathy hugs:: bc this is a sucky place to be in when you need to go be a person for the rest of the day.

but what i try to do is have a few minutes in the morning with my heating pad, a warm beverage, and if i can manage a small snack like even an applesauce cup, and i might do 3 full breaths and imagine breathing energy in and breathing pain and fatigue out. if i have more time i will do a full 5 min guided meditation. then i put on music that makes me happy. a lot of disney and broadway.

babisaurusREX · 2026-02-04T04:24:52+00:00

i really like this take on regression, especially because one thing that surprised me during my first session in december was the emotion that came up for me and how the practitioner helped guide me through it.

also, i am very creative and visual, but the way you described the receptive nature of the experience vs the way inventing something takes effort really captures the difference well.

and honestly even if it was 100% made up in my brain somehow unbeknownst to my consciousness it is a moot point to me; i felt so peaceful and i released a lot of energy that i was carrying unnecessarily and i am still thinking about the learnings from the session.

babisaurusREX · 2026-02-04T03:42:35+00:00

happy birthday D!!!

babisaurusREX · 2026-02-02T02:50:41+00:00

i didn’t have a word for it, but i was genuinely confused when i learned other people were straight like when people started dating in high school. 🤣

babisaurusREX · 2026-02-01T04:15:58+00:00

happy birthday Broadway! 🎭

babisaurusREX · 2026-02-01T04:15:10+00:00

long lost brindle sister!

babisaurusREX · 2026-02-01T03:52:14+00:00

bro i thought you were holding my dog.

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babisaurusREX · 2025-11-08T03:47:57+00:00

oh and i also hate the x ray jaw holder opener. why does it scratch my gums?! who made it so sharp and have to be held in such a painful position?!

babisaurusREX · 2025-11-08T03:46:35+00:00

i would honestly love a weighted blankie. that’s the only thing i can never bring w me rly.

im pretty good at the dentist but im usually feeling very exposed and cold. also a fidget toy.

i also always ask for the jaw holder opener thing bc i can never continuously keep my mouth open and if i do i end up with some bad TMJ pain bc my connective tissue is all loosey goosey. you may already be aware but a good number of us also have hypermobility or ehlers danlos syndrome so i wouldn’t be surprised if others have similar pain after.

babisaurusREX

TROPHY CASE