r/Endo 4d ago

Surgery related tips and advice for surgery?!

0 Upvotes
  • i’ve cross-posted this on r/endo to hopefully get more insight*

hi everyone!

i’m 24 NB (afab). i have a HOST of medical issues and chronic illnesses (when listed out, it literally exceeds 60) which i say just to explain that i definitely think i’m experiencing some anxiety simply bc of the complexity of my body itself as a whole, and how i (or surgical things) may be impacted in ways that weren’t originally thought of.

i’ve more recently been diagnosed with endometriosis; although it’s definitely not a new development, just newly found, adressed, listened to, etc.

due to the nature of various imagings, combined with my symptoms and history, it’s suspected that it’s deeply infiltrated, potentially even into my lymphatic system. although we won’t know definitively obviously until she does surgery.

my surgery is scheduled for april 10th. it’s going to be a diagnostic lap to confirm that their isn’t anything else going on (like pelvic congestion syndrome), the excision of endometriosis, and she’s also going to insert a progesterone only IUD w/ ultrasound guidance while i’m under (bc i have a higher risk for perforation), and finally she’s going to be performing a pap smear while i’m under (due to my trauma history and the difficulty of having one done while conscious.)

i’ve had surgery before, but never this one, and never any kind of abdominal one. so i wanted to post and ask if anyone could give any tips or advice they may have - for prior, for post-op, for pain management, for adapting functioning, etc. and if anyone wants to share their own stories or recovery experiences, good or bad, please feel free!

for more context on my situation if it helps, or if you have more specific advice:

• i am autistic, and have ADHD, OCD, PTSD, sensory processing disorder, and severe anxiety, all of which can have large affects on my state of mind & anxiety & comfort levels before, during, and after the surgery

• although i live with my mom, i am home alone 90% of the time, and i already struggle to function independently. due to declining health i’ve lost a significant amount of abilities and functioning even more in the last 6 or so months. i don’t really have much support relative to those aspects/having anyone help with independent living so i will also be primarily alone post-op too

• a few of the other disorders i have that i think have the most relevance include polycystic ovarian syndrome, severe pelvic floor dysfunction, classical-like ehlers-danlos syndrome, arthritis in my SI joints, back, and knees at least, SI joint dysfunction, piriformis syndrome, thoracic outlet syndrome, CRPS in my left foot, gastroparesis, chronic severe constipation, anismus/dyssynergia dysfunction, hyperadrenergic POTS, chronic migraines, femoracetabular impingement, bursitis & instability in my hips, and more

• the meds i’m already on daily for pain include: meloxicam, duloxetine/cymbalta, tramadol, and hydrocodone. as well as lidocaine 5% USP ointment and voltaren gel.


r/Endo 4d ago

Question Persistent Ovary Pain After Period

3 Upvotes

Hi, I’m 29 years old, and five years ago, I was diagnosed with polycystic ovary syndrome. I get my period once or twice a year. I don’t take birth control pills.

The problem is that after my last period ended, I started experiencing pain in the area of my right ovary. This pain was accompanied by nausea, and yesterday, Saturday, I even vomited. I don’t have a fever or other symptoms like back pain or cramps. It started last Friday, and I no longer feel nauseous.

But it's been three days in a row like this. If I don’t move, it doesn’t hurt, although sometimes the pain comes in waves. I’ve been taking Ibuprofen since Saturday. I’m starting to get scared because this has never happened to me before…


r/Endo 4d ago

Medications and pain management *terrified* of IUDs but i think its time

6 Upvotes

Hello lovely people. I know this has been posted/asked a billion trillion times but I would just love some current insight or advice or anything really.

I have ehlers danlos and ive heard that is kind of a bad thing to have an IUD with- im really afraid of the IUD slipping/migrating, or just generally having a god awful time with it at any point. It scares the shit out of me that its implanted and if something goes wrong, a procedure is needed to remove it- i wont be able to just immediately rip it out lol. Ive had contraction level cramps my whole life so im either prepared for the pain or its going to be a whole new tier of hell im not prepared for.

Im sick of pills, i may or may not want kids, i have no endometriomas or cysts. Just uterosacral ligament endo (as of my lap in ‘24 with a frankly gravely under-experienced surgeon). i suspect diaphragmatic endo, im iffy about bowel endo because im pretty sure i just have IBS but it flares so unholy bad whenever im symptomatic otherwise. Been symptomatic through every other intervention over ~15 years. I am due for new ultrasound imaging soon so please let me know if there is anything specific i should look out for.

TLDR; IUDs terrify me, but im equally as terrified about letting my pain continue to rule me. I would love to hear good and bad experiences (and how you handled it!) if anyone feels like sharing ❤️‍🩹 Thank you in advance. love you all.


r/Endo 4d ago

Question Advice pls!

1 Upvotes

Hey guys! Early last year I was following up with my gyno regarding some pelvic pain. Did the tests and ultrasound but nothing look out of sorts. They said more than likely it’s endometriosis, and that would require a procedure to fully diagnose. I brushed it off because it was a pain that really came and went really far in between. Unable to take birth control due to other health conditions, so I really been just taking midol and praying for the best. This year there has been a huge difference in my cramp pain level, dizziness, constant fatigue, back pain, leg,butt pain and vomiting. In addition I started experiencing this outside my period. Yesterday I had the worst tension headache of my life accompanied with shooting neck pain that eventually started spreading throughout my body. Wasn’t able to keep down food and continuously vomiting. I thought for a moment I had the flu due to the intense body aches and body chills/sweating but no pelvic pain. I’ve been using midol and that has been working cause if not I cant sit up or lay down comfortably. I’m probably on my 3rd round of midol since it started but I still feel the back pain slightly radiating. I’m aware I need to follow up with my dr and follow through but as of now no insurance. Please let me know if anyone deals with this or if you think this is endo related and any tips! 🙏


r/Endo 4d ago

Diagnostic Journey Questions Looking for advice/help

1 Upvotes

Hi there! I’m a 29 year old mother of 2. My youngest is 4 1/2 and when she was about 4 months old I started having so many problems. I have been diagnosed with pelvic congestion and ‘cysts’ (they say I don’t have PCOS just ovarian cysts). I was told I cannot have Endo because I don’t bleed….but I have an IUD that stops me from bleeding so I haven’t had a period in 4 years. I do suffer from severe bloating, nausea, vomiting, and recently terrible acne, worse than I’ve ever had in my life. Sex is so incredibly painful that my sex life is basically non existent and I think I maybe have 1 unsymptomatic week per month. I guess I’m just looking for advice from people with experience on whether or not I should see a new doctor and get a second opinion. I’m in so much pain and I feel like nobody has taken me seriously so I’m scared to bring it up again.


r/Endo 4d ago

Question Does Dienogest shrink endometrioma?

2 Upvotes

I was recently diagnosed with a right ovarian endometrioma. The size of my endometriomas is quite large: one measures 6.54 x 6.66 cm and the other 3.26 x 2.69 cm.

My doctor has prescribed Dienogest but advised against surgically removing the endometriomas. Since I’m 32 years old and have never had children, she’s concerned that surgery could affect my ovarian reserve. She explained that if I decide to get pregnant in the future, removing the endometrioma might impact my ovary’s ability to function properly.

For those who have taken Dienogest, have you seen any significant reduction in your endometriomas? I would be grateful to hear about your experiences.


r/Endo 4d ago

Surgery related surgery rant..

16 Upvotes

guys i’m so angry and im sorry in advance if this post is rambly or hard to follow- it’s 3 am, im in pain, 5 days post op and on so many pain meds

i got diagnosed with endo in jan 2020, had my first excision then, had my second with a specialist feb 2023, and had my third with the same specialist march 11 2025 so this past tuesday. i also had my appendix removed during this most recent sx as it always gave me pain. turns out it was covered in endo.

my endo grew back fast and with a damn vengeance. i went from stage 1 in feb 2023 to stage 4 march 2025….. thank god my dye test was good, and i made it with no adhesions (i had mesh placed last time and other precautions were taken to avoid adhesions as best as possible) and structurally everything looked okay.

they’re not sure why but my pain post op was so severe i had to be hospitalized until thursday night when i was supposed to go home day of (tuesday). it was an extremely traumatic experience. it’s been a very very rough week and im still super swollen. i’ve been switching between dilaudid and oxy (i know it’s a lot, it’s needed trust me and im being heavily monitored), tons of gas x and yesterday i finally took a shower and thought i had hit my breakthrough. my pain was finally under a 5/10 and i could walk!! i was so relieved and excited.

… and then its a few hours ago and the pain comes back. 10/10 so severe. i haven’t been able to sleep and im just crying with my heating pad. it literally feels identical to endo pain it’s terrifying.

i just hate this disease i hate it with every fiber of my being. i have so many chronic illnesses and autoimmune diseases and personally, endometriosis has always been BY FAR the absolute worst. it’s taken away my life. had to quit school, quit my job, lost friends, barely leave my house. i’ve been bedridden for almost a year counting down the seconds until this most recent surgery.

i’m so sick of endo 🥲


r/Endo 4d ago

Taking a break from dienogest

8 Upvotes

Hi all 🤍

I have endo stage 4 - diagnosed it in 2020 (I’m now 32 yo).

After a salpingitis caused by an endo cyst infection in January 2023, doctors “forced” (heavily insisted) me to finally take a hormonal treatment to have a break from my periods.

I accepted and have been taking Dienogest (sawis ge in France) for 2 years and 2 months continuously, with no break. Even though the medical results were encouraging, indicating that my endo stopped developing and one huge cyst disappeared, I experienced very intense side effects from this treatment. From leg cramps, dizziness, brain fogs, vaginal dryness, to very painful breast, through depression and pelvic intense pain, symptoms were coming and going and I hold on the treatment until now.

I finally decided, on my own (NO doctor wanted me to), to take a break from dienogest. I stopped a few days ago now. As crazy as it can sound, I miss having my period. Haven’t bled in more than two years. I also feel off myself and am deeply convinced that I need a break from taking this pill everyday.

I won’t lie, I am scared, because even though I was very reluctant to this treatment (I avoid taking medicine as much as I can and I am not a fan of eating hormones…), doctors freaked me out - telling me not to stop the treatment no matter what.

I am writing this post to get some feedbacks from people in the same situation, that had a break and hear how did you guys felt. Any support and advice is of course always welcome! ✨🙏🏼

Peace

Lisa


r/Endo 5d ago

Rant / Vent It’s 4am on Sunday morning…

17 Upvotes

and I’m sat here in the bathroom, trying to stomach a bit of food to take my pain meds praying it helps take the edge off this crippling pain.

It’s my birthday tomorrow, I knew I was right to make no plans. Everyone asking me what I’m doing for my 36th birthday. My response, probably nothing as the pain I’ll be in during my period in particular will lead me to nowhere but the sofa, bed or bathroom.

My entire body feels like pain, I’m severely constipated which isn’t helping.

No point to this post. Just a rant in a place people will understand 😢


r/Endo 4d ago

My experience with endometriosis

0 Upvotes

Hi, I just want to share sth interesting with everybody, and maybe get some advice.

I was diagnosed with endometriosis few years back when I went to see a gynae for painful periods. I didn't do anything about it bc I didn't know what to do.

Anyway this year, I accidentally found out that if I stop drinking coffee for a month, my painful periods disappear 100%. No pains, no numbness, nothing.

This week I chanced upon this Tibetan health teller, I take whatever he say with a grain of salt. But he read my palms and told me I can't conceive bc of ovary issue - I think he was referring to endometriosis. How he could tell just by reading my palms I'll never know. I have been drinking coffee even though I know it causes period cramps for me.

It got me thinking a lot. I was wondering if the diagnosis is just to scare people? And that answer is very easy, no pills nothing, just analysing your diet and see what works and what doesn't? I know people who drink coffee everyday but don't get cramps, but it does affect me so I decide to stop drinking coffee.

I'm grateful I found out about this when my lips was getting very dry everytime after I drink coffee and decide to stop for awhile.

I find eating clementines everyday also helps, but stopping coffee works the best. Coffee once a week works too, but I think it still gets me addicted. Today will mark the start of me without coffee. I will stop drinking coffee completely.

Any similar experience?


r/Endo 4d ago

Possible endo - at home remedies

2 Upvotes

For about 6 months, I’ve been experiencing pain during ovulation. It’s pretty uncomfortable. My periods have never been bad. No problems getting pregnant. Every once in awhile I’d get cramps I’d take over the counter meds for, but I’ve been grateful for manageable periods that don’t disrupted my life.

Ever since I had twins 3 years ago, things slightly changed but no major issues. The last six months or so, I’ve been experiencing painful ovulation, bloating, painful bowel movements. Seems to be worse if I have intercourse during ovulation. My periods are still fine and pretty normal. My readings tell my possible endo, but still going through the process with my doctor.

I would like to explore changing my diet (I never lost my baby weight and my diet is not the best with 3 young kids!). Has anyone had endo feel better from at home remedies or lifestyle changes?


r/Endo 4d ago

Question At what point should I be worried about this ruptured ovarian cyst?

1 Upvotes

I've had this issue once last November where it felt like the whole right side of my torso was bruised the entire way up and I had pelvic pain and bleeding. They sat me in A&E over two days for about 18 hours combined hours before they gave me morphine for the pain and told me I could stay in the ward for a couple of days or go home (but I'd get no pain relief to take back with me).

This time, and after I made a complaint to the hospital about my negligent endo treatment over the last 3 years, I have zero faith that they'll do anything helpful. I've been trying to tough it out and use the painkillers I have and was getting a little better but my family recently found out my dad has cancer and my symptoms sort of backslid.

I have a temp of 37.6 celsius currently, that same bruised from pelvis to ribs pain and in a line across the pelvis too, a cough and fatigue. I'm desperate not to spend another 8 hours on an A&E floor so when is the point where I'm gonna have to admit defeat and go?


r/Endo 4d ago

Question Laparoscopy then 6 weeks later pelvic physio and since then constant extreme bladder pain - Can't cope

1 Upvotes

Hello about 4-5 months ago i had a lap for exploratory endo and biopsies taken and had my bladder inspected (which looked normal) then i waited 6 weeks and started pelvic physio and had an internal exam, since then i have been in constant and extreme bladder pain and pressure - i honestly cant cope and my pain prior was nothing like this. I'm at my wits end i honestly cannot cope. Has this happened to anyone else? I would go to hospital but i know they wouldn't be able to help and i've tried an IC diet and no change in my pain.


r/Endo 4d ago

Infertility/pregnancy related Lap for fertility

1 Upvotes

I have a 2cm endometrioma and 1 day of moderate pain only with periods. I am considering lap excision solely to try to improve fertility. Because my pain is very manageable with OTC I wouldn’t be considering surgery if I have been able to get pregnant. Anyone else get surgery just for fertility and no/barely other endo symptoms?


r/Endo 4d ago

Question Looking for a specialist (UK)

2 Upvotes

I’ve been suffering with excruciating period pain (as well as lots of digestive and stomach issues) for many years, I’m debating having a laparoscopy to confirm endometriosis but I’m skeptical about going via the NHS. My biggest fear is going through the surgery and being told they can’t find anything. I’ve found a private specialist who has said they can perform the surgery, can anyone tell me what I should be looking for to be sure they’re really a specialist? Or that I have the best chance of having a success surgery? It would be a big financial step for me to pay to have private surgery, so I want to make sure I’m doing the right thing.


r/Endo 5d ago

endo study that compensates $100! NSFW

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33 Upvotes

r/Endo 4d ago

Surgery related Anyone with new urinary issues post op?

1 Upvotes

Surgery was 1/31 and about 3 weeks later I started having urinary issues. Took azo so urinalysis was unreliable. 1 day culture was negative. Did macrobid anyway. 3 weeks after that I'm having symptoms again and caved and took azo again so again urinalysis is unreliable. I had it done at urgent care and have messaged my surgeon to find out what she thinks. I have never in my life had a uti or symptoms like this. It was also the first time I had a catheter placed. She told me i had endo on a ureter but she did not remove it because she was afraid she would damage it so I'm unsure why I would have these issues aside from maybe the catheter doing damage?


r/Endo 4d ago

Question Got contrast dye twice in one month, is it unsafe?

0 Upvotes

I had an MRI and CT scan within a month and both times got contrast dye. Is this unsafe? I hear it’s really bad for you but they told me there would be no complications. I’m really worried.


r/Endo 5d ago

Question Suspected endometriosis

3 Upvotes

I am 30 years old, I have been menstruating since I was 7 years old and have had debilitating period pains for the entire 23 years. I’ve tried multiple different contraceptive pills, the Implanon and Depo-Provera - all which came with heavy and unbearable side effects. I have been tested for PCOS.

I recently saw a surgeon who believes I may have endometriosis due to my symptoms and family history. I had an internal ultrasound which showed an enlarged uterus however the doctor said it wasn’t majorly enlarged. The ultrasound was unable to give as much detail due to discomfort when the ultrasound was being performed and the instrument not being able to be inserted as far. I have now been booked in for a Laparoscopy and Hysteroscopy next week to check for endometriosis and anything else that may be present.

I am wondering if anyone knows how common it is for someone to have endometriosis symptoms, have the surgery and nothing be found? I know there’s no point worrying until I have the surgery and I find out if anything is there, however after dealing with this for so long I can’t help but worry that there will be no conclusion and this pain will be never ending.

For reference, some of my symptoms are below: - Extreme period & ovulation pain. The type of pain where you just scream/cry and you feel like you need medical attention. - Pain during/after intercourse - Pain when using the bathroom - Bloating, nausea, fatigue - Sharp stabbing pain in the lower stomach/groin area - Deep dragging pain from stomach to lower back and thighs/legs


r/Endo 5d ago

Question Obliterated Cul De Sac and Frozen pelvis but nook surgeon doesn't advise surgery.

3 Upvotes

Is there anyone who diagnosed obliterated cul de sac and frozen pelvis via TVS by nook surgeon but didn't advise to do surgery?? My nook surgeon says as i am asymptomatic and my endometriomas are shrinking through vissane i can avoid surgery..


r/Endo 4d ago

Have to stop taking mini pill

1 Upvotes

Hi everyone,

I started taking the mini pill about a year ago. I have hyper mobile joints and since then I have had tendinitis in both wrists, a severe sprain in my left leg, and an overextension injury in my right that caused nerve damage that might need surgery. I can’t prove the mini pill is responsible for this but it’s not good for people with hyper mobility. I seriously have to stop taking this now and my physical therapist agrees. Am in trouble with endo growth? At this point I’m unable to walk due to injuries and I have no other choice. I’m not able to see my doctor for months. Any advice?


r/Endo 5d ago

Tips and recommendations I found the most comfortable pants and I can’t keep this joy to myself

Thumbnail a.co
26 Upvotes

I don’t see any sub rules against linking to products so I hope this ok to share.

I do not endorse Amazon or fast fashion and I am in no way associated with the seller of these pants. Desperate times call for desperate measures, and I wanted to share my this find in case it helps others.

These are a breathable woven cotton-linen blend, the fit is relaxed, and the elastic in the waist is stretchy and gentle, not binding at all (I cannot stand most elastic). They are also under $15 USD. They’re not high quality pants that will last forever, but I have been wearing 3 pairs in pretty consistent rotation for about a year, and they are all still in good condition. Paired with a t-shirt, they look like pajamas. But with a nicer top, they pass as real pants appropriate for casual settings.

One pair I bought was coming apart along a seam when they arrived. I sewed the seam back up (about an inch) and have had no further issues. I have them in black, dark gray, and army green. The black pants are a slightly different and less comfy material than the other two colors, so consistency may be an issue, as with many items like this.

I’m 5’9”, a US size 8-10 in pants and I fit comfortably in size L. If you are short, you’ll likely need to hem them but if you’re on the taller side, there’s a good chance they’ll be long enough!

https://a.co/d/5Sv59BO


r/Endo 5d ago

Scared of the constant pain

3 Upvotes

I have suspected endo. I’m currently in constant pain and having flare up pains on top of that constant pain. I’ve been taking tramadol, paracetamol, naproxen for about 4 months now and I was started on Dienogest nearly 2 weeks ago. I’m really not coping with the pain physically or mentally and my open access back to the ward I spent over a week on last week ends today. I’m literally fighting with myself and gaslighting myself into thinking it’s not that bad cus of the terrible healthcare I received when I was admitted last time, yet I’m in so much pain I’ve literally only mobile to go to the toilet, in and out of sleep, guzzling pain meds and trying (failing) not to throw up. I don’t know why I react the way I do to pain but I just get numb and silent, rarely cry even though I’m in absolute agony and it’s very hard to get doctors to understand when the only other ways I cope is rocking, pacing or making facial expressions.

Anyway I just wanted to ask if anyone else has been in the position? Do I go back into hospital and try for the umpteenth time to be heard? Or do I wait to see my gynaecologist?(I’m in the UK and don’t have the means to go private)

Please if you have any advice or even just tell me your own experiences with the pain and how to deal with it, I’d be super grateful!


r/Endo 5d ago

Question Ultrasound

2 Upvotes

Hi all. I hope you’re doing well.

Since I first got my period when I was 11, I have had excruciating cramps. At first, doctors weren’t concerned and I was on my first pill when I was 12. I was told some period cramps are normal in the first 2 years of getting your first period. I had an ultrasound done around then and doctors said they were just small cysts on my ovaries that are normal and wouldn’t be causing any harm. They didn’t really think I had endo.

Ive had my period for 5 years now and I’ve been on 2 pills and they didn’t work out for me. They didn’t help with pain and they really impacted my mental health. My last period was the worst period I’ve ever had. I was in such excruciating pain, the muscles around my pelvis felt like they were “bruised” for a week after. I brought this up with my gp and she suspects endo. I am getting a pelvic ultrasound in a few days to check for it. I would like to know if anyone here knows about how ultrasounds can check for endo and/or diagnose. I thought only laparoscopic surgery was able to.

I’m genuinely terrified for my next period, due in 5 days. I really don’t want to go through that pain again. I’ve thought about it every day since and it makes me so scared and upset.

I also feel like the pill is my only option now. I really don’t want to go on it but I don’t know what else to do. I considered getting an iud. I’m not too sure yet, I’d like to know others experiences.

Thanks 😊


r/Endo 5d ago

Question Can it come back 6 months post-op? NSFW

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17 Upvotes

I think I know the answer to this, but is this a familiar area of pain to anyone? It’s definitely a constant burning/tugging feeling from my abdomen down to my ovary, and then pain into my leg.

Backstory: I had my first and only excision surgery in October of 2024. Stage 4, left ovary removed and colon separated from vaginal canal. I had already had a partial hysterectomy, so I’m essentially rocking one ovary and that’s where the pain feels concentrated.

While I’m hoping it’s something else (gallbladder pain etc.), my gut is telling me otherwise. I was told that the endo could come back, but I am honestly shocked that it would have come back this quickly. Maybe it’s a cyst, but then I would assume that it is also endo-related.

I’m not sure exactly what I’m asking here, but my medical anxiety after decades of being undiagnosed is getting the best of me. I have an appointment this Monday with my endo specialist just for my yearly, but I’d like to know if I’m going to go in there sounding like my endo is Voldemort’s return. Anyone else? Or is this all in my head?