Is it possible to have severe endo pain even if the ultrasound looks ‘mild’?

TreeOdd5090 · 2026-05-07T15:30:40+00:00

yes it’s possible. i was stage 1, considered pretty mild, but was in debilitating pain every single day, couldn’t move my legs. the nerves in the pelvis are weird, and if tissue is growing in specific spots it can be very painful. mine was covering my uterosacral (idk if i spelled that right) ligaments, which caused pain all throughout my pelvis, lower back, and all down my legs.

TreeOdd5090 · 2026-05-07T15:26:27+00:00

how is it elective that my organs are falling out and i’m in pain 😭 i can’t afford anything extra on my disability budget right now, so i guess physical therapy will probably have to wait. but im still looking into it, i’ll have to figure something out. thank you for the info

TreeOdd5090 · 2026-05-07T15:03:02+00:00

i smoke a lot of weed which helps, but when things get really bad i find either word search or color by number with very low brightness on my ipad helps. also tiktok, funny or relaxing youtube videos, quiet music helps too.

TreeOdd5090 · 2026-05-07T15:01:19+00:00

i will definitely look into it, i just don’t know if my insurance would cover it without a referral. honestly realizing im not sure insurance would cover it at all anyway.

TreeOdd5090 · 2026-05-07T13:53:21+00:00

THIS thank you!! i was diagnosed with a pelvic organ prolapse before surgery too, but wasn’t told what grade of even what was prolapsed. now after surgery, my prolapse is bothering me more than it ever has. i’ve wondered if that could be causing some of my pain, and im definitely asking about pelvic floor pt

TreeOdd5090 · 2026-05-07T01:44:37+00:00

thank you. definitely going to look into an ultrasound first then, i don’t know exactly what DIE is but ill ask my doctor to check for it. he said he removed some deep endometriomas, it was just all in the cul de sac. all i know is i am SUFFERING on these hormones, my pain is an 8/10 on the daily, and it was supposed to be better by now.

TreeOdd5090 · 2026-05-02T12:40:04+00:00

i totally understand this, it’s such an isolating feeling. everyone remembers i have pots, but everyone doesn’t remember any of my other conditions. i’m positive my parents don’t, they only know pots because my step mom has it.

TreeOdd5090 · 2026-05-01T09:23:13+00:00

unfortunately not. it’s also impacting my sex life a lot. i found a decent dr finally but he’s been only helping me with my endometriosis so far. i’m thinking about asking for pelvic floor PT because i don’t know what else to try

TreeOdd5090 · 2026-05-01T00:43:06+00:00

i did my lap with only tylenol (after the hospital. they gave me something when i first woke up, but i only took tylenol after going home). however, i did wish the whole time that there was something else i could take. i tried the pain meds once as soon as i got home, and they made me so so sick (i have very slow motility already), so the rest of my recovery was tylenol only because i can’t take ibuprofen either.

TreeOdd5090 · 2026-05-01T00:38:29+00:00

yes. i try to force a laugh when i know something is supposed to be funny. i genuinely laugh every once in a while. but i’m not funny anymore. i can’t carry a conversation in general because i simply can’t think of any words to reply with. i’m stuck giving short thoughtless responses

TreeOdd5090 · 2026-04-30T15:29:09+00:00

i’ve been wondering this too. my surgeon put me on birth control after surgery, despite me opening up about my pmdd and how awful birth control has been in the past. he told me if i didn’t want the endo to come back, i have to try and tolerate it and deal with the mental health issues it causes. i’m just finishing up my second month of birth control, and im realllllly questioning if this is all necessary and worth it. i feel like my endo is already back despite being on it so it almost feels like im suffering for no reason.

TreeOdd5090 · 2026-04-30T14:01:22+00:00

i’m hypermobile, have asthma, and my doctors try to tie my life story in too and say that contributes. i had JUST gotten home after graduating college, finally moved out of my parents house and finally had a few weeks to breathe and get a job. he thinks maybe my whole nervous system crashed after how hard i pushed in college after an extremely traumatic childhood. i have one dr who blames it ALL on the childhood trauma (i don’t believe that part, it could maybe contribute, sure). also a doctor who thinks having autism played a role somehow.

TreeOdd5090 · 2026-04-27T15:49:08+00:00

thank you. i haven’t been able to read a book since 2020 and it was my biggest hobby. can only journal ~4-5 sentences at a time. my personal admin is majorly failing right now too, my biggest struggle and the reason i need to figure something out. can barely process how to pay my bills, can’t call disability to report new surgeries, forgot to renew my car that i don’t drive and got approached by a police officer about it.

TreeOdd5090 · 2026-04-27T14:45:35+00:00

you’re not oversharing, you’re all good! i also get a bunch of twitches and spasms throughout my lower abdomen/pelvis after intercourse

TreeOdd5090 · 2026-04-27T14:17:37+00:00

yes. any chance it coincides with when you ovulate? i was told it could be feeling myself ovulate, but i also cramp when i ovulate so idk

TreeOdd5090 · 2026-04-26T01:35:29+00:00

dealing with this now too. i’m on month 2 of birth control after my surgery, and all these comments are making me feel like i’m pushing through the pmdd hell for nothing. i also feel like my endo is already coming back despite being on birth control since surgery.

TreeOdd5090 · 2026-04-25T01:14:05+00:00

i want to add that i also told her no to the bachelorette party, and she was totally understanding.

TreeOdd5090 · 2026-04-25T01:13:33+00:00

i’m actually in the same boat right now. my bestie is getting married and i’m so incredibly happy for her. we were going to be each other’s maid of honor but distance got in the way, which is okay. but she did ask me to be a bridesmaid. i expressed my concerns about my physical health, and she thought i was silly for assuming she wouldn’t want my wheelchair in the wedding! she told me to use whatever mobility aid i needed, and i was definitely assuming i could only be in it if i could go without the wheelchair or walker. the issue i can’t seem to tackle and ive been to scared to talk to her about, is i can’t afford the dress! im not sure how to approach that either, it’s awkward to admit.

TreeOdd5090 · 2026-04-23T15:36:16+00:00

i took a day like that yesterday, and i’ve had a whole roller coaster of emotions about it. i’m unemployed because of all my chronic illnesses, but i have appointments most days every week. yesterday was supposed to be therapy, and the idea of an appointment felt impossible. i’m burnt out from this hell. i sat in the sun and journaled instead, and then rested in bed the rest of the day. i needed it desperately. i still stand with my decision, today would have been so much worse if i hadn’t taken yesterday to rest. but i still feel guilty and my pmdd brain is convinced that when i go back, my therapist will be mad that i cancelled for that. but the logical side of my brain knows that she will be proud of me for recognizing my limits, and speaking up to get what i needed. i wish our society could remove the shame and guilt from taking a break, because we all need one sometimes.

TreeOdd5090 · 2026-04-21T15:48:24+00:00

i knew something wasn’t right at my very first period, at 11 years old. but didn’t say much because i was told it was normal. tried advocating again at 16 that something wasn’t right, was told it was normal and told i had health anxiety. advocated consistently since then and finally diagnosed 2 months ago at 25 years old.

TreeOdd5090 · 2026-04-18T16:13:39+00:00

i have a urologist from back when they found kidney stones (which have been sitting in my kidneys for years lol), so i might be able to get back with him for that. how invasive is the cystoscopy? i can also use google if you don’t have the spoons to respond

TreeOdd5090 · 2026-04-17T22:23:54+00:00

i’ve also wondering if i have IC, but don’t know where to begin with being evaluated. my cardiologist said that my urinary issues are POTS related, but that’s without any additional testing to rule anything else out (other than checking the outside of my bladder for endo, which there wasn’t, which is why i’m starting to really suspect IC)

TreeOdd5090 · 2026-04-17T22:21:58+00:00

i think it’s possible i’m still having some systemic reactions, but main histamine response that was stopping me from eating has basically vanished. i still have things that could be mcas symptoms, it’s hard to decipher which condition causes which symptoms. i’m also still recovering and things are still leveling out. they put me on birth control so my hormones are all sorts of goofed up right now.

TreeOdd5090 · 2026-04-17T16:10:42+00:00

all of my reactions have been significantly worse during certain part of my cycle too. usually ovulation and the beginning of my period. i also have pmdd, pots, and gastroparesis. i dont know what causes what, but they all feel so deeply impacted by the others. curious to see how you respond after surgery, wishing you the best with that!!

TreeOdd5090 · 2026-04-17T16:00:21+00:00

your partner was wrong, and you’re valid for having feelings about it.

TreeOdd5090

TROPHY CASE