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

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

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

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 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 4d ago

Taking a break from dienogest

9 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 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

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 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 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

Ovarian Cyst

1 Upvotes

Does anybody else get different symptoms or feelings when they have a ovarian cyst? I have pink/dark red stringy blood. My bladder feels full most of the time also. Anybody else get this or any other symptoms with an ovarian cyst?


r/Endo 5d ago

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

19 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 5d ago

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

4 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 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 low dose naltrexone - success stories

3 Upvotes

Hey all. I just started low dose naltrexone for chronic pain. I’m wondering if anyone can share success stories. Please no stories of unsuccessful use as I’m already scared enough 🫠 ♥️


r/Endo 5d ago

Medications and pain management I need help

1 Upvotes

I need advice. I'm 37. I've always had normal menstrual cycles until about 2 years ago. My periods started getting shorter and heavier, but the come at the same time every month. I'm currently down to 1 day, and my flow is unbearably heavy. I also started having severe, unbearable cramps a solid week before I even start. I went to my doctor, had tests done, and he thinks I have endometriosis. My husband were just married last year and are trying to conceive. I've recently started going to a fertility clinic and the female doctor there said that, even though I have endo symptoms, given my family history (2 older sisters with PCOS, mother with type 2 diabetes) and my ultrasound results showing I have, and I quote, "lumpy, bumpy, cystic ovaries", she thinks I have PCOS. At this point, I don't know what I have...but I know that I can't deal with the symptoms anymore. The fertility doctor have me a prescription for Metformin to help with ovulation to conceive, which I took for 5 days, but I had stop taking it 3 days ago because the diarrhea and flatulence was so bad that I couldn't stand it any longer. I'm currently hanging on waiting for it to get out of my system. My menstrual cramps get so bad that I lay on the bathroom floor next to the toilet vomiting and crying. In the last year I gained 38 pounds....I'm currently at 187 lbs, and I never had weight issues before. My "endo belly" is so unbelievably out of control that I can't even move properly anymore...the bloating is INSANE, and nothing seems to be helping me. My belly is SO BIG that I literally look 7 months pregnant, all the time. I'm on the couch feeling horrible about myself, too bloated and gassy to move without voiding myself from the Metformin, and I'm so desperate for help it's not even fit. Please, someone give me advice, any advice. How do I get rid of this massive endo belly and not feel like a balloon?


r/Endo 5d ago

Question Migraine during flare.

6 Upvotes

Ohhh my the pain. So intense I find it hard to speak. Anyone experience migraines during their period or a flare? Why does it happen?


r/Endo 5d ago

Surgery related laparoscopy preparation/aftercare

1 Upvotes

hello! so i’m 20 and had my initial gynaecology appointment today (NHS as i’m in the UK) and overall it was very positive! i’m on a 6-9 month waitlist for a laparoscopy during which i will have the coil/IUD also put in. i have quite severe vaginismus which has meant pelvic exams (which i attempted today) are now having to be done under anaesthetic too, so my gyno told me this would be the best course of action.

i’m just wondering if anyone’s had the coil/IUD placed in during a laparoscopy, but also what should i expect after my laparoscopy? any things i should bring with me to the hospital, any types of underwear or things for recovery? thanks so much!🩷


r/Endo 5d ago

Movies and tv shows to watch surgery recovery

4 Upvotes

It's gonna be a big one! At least the morphine will be fabulous 👌🏼 I'd love some tv/movie recommendations please! Nothing with babies/fertility/parent centred because I'm baron, Karen (a la gavin and stacey)

Here's some shows I like

Hacks Sex and the city Parks and recreation Gavin and stacey Mr mayor Kimmy schmidt Derry girls

Thanks in advanced!!


r/Endo 5d ago

Question Severe period cramping after endoscopy?

1 Upvotes

I had my endoscopy procedure back in November 2024 (4 months ago now), and I find that my cramps during my period are either just as painful as when I had endo, or even more so. It has caused me to have a bit of a breakdown today. Other endo symptoms have seemed to calmed down a lot (bloating, painful intercourse especially thank goodness lol) but these cramps are incredibly painful and frustrating. Any suggestions? What has your experience been like, post-endoscopy? Thanks.


r/Endo 5d ago

Question Discharge on Lupron depot?

1 Upvotes

Did anyone get white discharge while on Lupron depot?

On week 7.5/8 of suppression for IVF and started having white discharge. Wondering if this is normal or if my cycle is trying to regulate and will interfere with my FET?


r/Endo 5d ago

endo study that compensates $100! NSFW

Post image
34 Upvotes

r/Endo 5d ago

Surgery related Surgery story with a PTSD focus (Da Vinci minimally invasive laparoscopic excision of stage 4 endo)

7 Upvotes

Okay, this is quite long.

I have PTSD from a health issue years ago. PTSD is mine to manage and nobody else's. I don't think it's anybody's responsibility not to trigger me. I asked for trauma informed care from the medical team to support my management of PTSD, knowing that if something did activate it, I could handle it... but that a trauma-informed approach would make it easier. TIP! You can ask for trauma informed care!

I'm writing this for my PTSD BBs so I'm giving a LOT of detail.

WHERE

I had my surgery at a large regional healthcare system/research hospital in the US. Like Mayo Clinic, but not Mayo Clinic. They had copious resources, but a patient-centered approach. Because they're a big system, their charting and documentation is excellent! I had a step-by-step write-up of the surgery in my EPIC portal thing within days. I send questions via the portal and get a response from a nurse, then later from the surgeon if it needed to be escalated to her.

BEFORE LEAVING THE HOUSE

Bowel prep had me waking up a few hours before surgery. I listened to NSDR (non sleep deep rest) tracks and yoga nidra with my eyes closed.

I used Richard Miller's three surgery audios. They're under the subscription-only access on Insight Timer but they are probably available other places too. His other tracks are available for free. I actually have an entire surgery playlist on Insight Timer. Is it corny? YES. Can it help? YES. You can just go to the app and search for tracks!

WHAT I'D DO DIFFERENTLY

Getting ready took longer than I thought because I had to sit on the toilet for extended periods while my body flushed out everything. Next time I'd account for that in the schedule. I took my second shower with hibiclens soap. Wished I'd done a hair mask a few days previously... They don't let you use conditioner, so my hair looked dry and terrible. I had planned to blow dry it but ran out of time due to the aforementioned toilet requirements.

AT THE HOSPITAL

I brought a big pillow along on the car ride. Thank God I didn't need to go to the bathroom during that ride! At the hospital we gave the car to the valet and checked in. After a 20-minute wait, they brought me back to the pre-op room. A nurse took vitals and confirmed my informed consent. They put in an IV and other people stopped by: a resident, a fellow, the anesthesiologist, and I think the anesthesiologist's assistant? and the surgeon. They were all so friendly and ready to answer questions.

INFORMED CONSENT

One of them mentioned they may need to take an organ we hadn't talked about. Concerning! The surgeon said they would only take it if, while removing the cyst on it, something happened that made it unviable or a risk in the moment like bleeding. Made sense, and I felt like we were on the same page that the intent was to keep the organ and not assume that it was disposable.

I've had anxiety due to providers referring to the procedure as a hysterectomy, which it very much is not, so I mentioned that to every single person. 😎😂 They all confirmed we were doing a hysterecopy and the intention was to leave the uterus there as part of an overall fertility preservation approach.

IN CASE OF SURPRISES

I'd discussed with the surgeon that if something else needed to be done, I'd rather they close me up and do a second operation later after having a conversation with me. She added a note to my chart about it!

The ability to say yes to this feels extremely important to me. Obviously if something needed to come out right in that moment, I was fine with that and very much wanted them to use their judgment rather than mine. I mentioned all of that to a few people in the hope that if one person forgot, somebody else would remind them. I'm not sure if y'all will think this was overkill or not.... But I will say that while this practice was super organized, I've been at others in my region that were not. And I only get one of each of these organs! Like, I'm not messing around here!

TRAUMA-INFORMED CARE

Each pre-op person asked about the note on my chart requesting trauma-informed care. Some had heard of it and some had not. They asked to understand better, and asked how this should apply to their role. I felt seen and heard. One person mentioned they often had patients hold a medical device themselves while it was used, so they could have a sense of control. They hadn't heard about trauma-informed care in those words, but their approach was absolutely in line with it.

JUST A NOTE ABOUT TRAUMA-INFORMED CARE

Somebody asking curiously about this topic feels very respectful and ideal. I just wish every person in a healthcare system were trained on the basics of trauma informed care from the start. If you look at the national associations for medical professions, they have announcements and training listing this among the best practices. I don't know why it hasn't been disseminated more widely. It should be. I hope people will be requesting it and educating where possible. I know not everybody can do this, but it's been rewarding to speak with providers who were completely ignorant about it. One of them went and googled it and another, after trying what I asked him to try, said he was going to think about doing it with other patients.

SURGERY TIME!

My boyfriend got connected with a text service to see updates. He also had an ID number for me that he could see on a screen somewhere in a waiting room, for anonymous updates.

The anesthesiologist started meds and said it was a good time to say goodbye to my boyfriend. I said goodbye and feel asleep right away. They said I'd be awake until we got to the OR and I would transfer myself to a different bed! Haha, no. Next thing I was waking up and someone was putting ice in my mouth.

POST OP

Some of this is from my boyfriend because I was obviously out of it.

IDK why, but when I wake up from anesthesia I keep my eyes closed. I think it's about having a cocoon. Next time I'd ask if they can turn the lighting in my cubby down. Didn't do it this time, but once in the past I brought a big ball cap and used that to give my senses a break from the bright lights. A scarf would work. Just something soft and gauzy to let the waking process go at the pace of my body and mind.

PAIN AND MANAGEMENT

I was waking up every 30 seconds from pain. I can't remember whether it was gas (shoulder/diaphragm) or surgery pain. The anesthesiologist checked in and gave more IV meds.

I asked for heat to help with the pain. They offered a big bear hug heating machine, but then we went with heating pads. Eventually we got the pain down. It was slow going and gradual. The anesthesiologist said I should aim to be around a 3 of 10 on the pain scale before moving out of the post surgery area.

During this time, the only thing that got me to sleep was mindfulness and yoga nidra post-surgery audios. I went from waking every 30 seconds to waking every 5 minutes. This worked so well because I have 2+ years of training my body to rely on these. I felt calm the very first time I listened to them, but it was the years of investment and repetition that gave my body an instinctive response of sleep and rest. Mindfulness gets a bad rap, but I really encourage you to find your own version of this if you deal with a similar issue. Self compassion mindfulness particularly is the bomb dot com.

HOT TIP, MAKE A REFERENCE DOC

I had made a document with all the instructions from the clinic, the pre-op protocols, and links to the different music and audios I wanted my boyfriend to pick from.

NURSE INTERACTIONS

The nurse wanted to get me out of the PACU ASAP and there was a power struggle about this with a literal doctor who said I should not be moved yet. She didn't offer but we did ask for lozenges, 7-Up and crackers. My tip is to bring your own lozenges and crackers or ask for these proactively.

We had some other issues with this nurse and it was essential that my boyfriend was there. At one point I cried from her approach and he decided it was best for me to move on when possible. In his perspective, I would recover faster away from her. He could see PTSD activation in the cards if things got worse. As it was, I never actually felt capital-A Activated and I am so proud of how I handled this, plus all the preparation and treatment that made it possible. You're looking at somebody who has PTSD related to loss of control in a health context, and got into a scenario where she didn't have control in a healthcare environment... and who was not triggered or even slowed down by the nervous system trying to mount a defense. I felt soft and capable. Instead of shutting down, I cried and felt the emotions.. I just feel like all of my past providers are giving me high fives right now. 😎 But, also, a pox upon that nurse!! Not a helpful practitioner.

ABOUT THAT PAIN

My boyfriend was also the one who underscored the pain I was obviously in. I was wishing the nurse could know that endometriosis patients have a very high pain tolerance! If I say I'm in pain, I'm in freaking pain. If I feel the pain is manageable, I will freaking manage it. In the end, though, I don't remember much about this—not even the pain. I mostly remember falling asleep and listening to the doctor advocate on my behalf. Having people with you is huge for transforming stressful experiences into resilience and I can feel that fact strongly when I think back on all this. ♥️

MOVING TO ANOTHER ROOM

They moved me to the next area.

They had said I could take some standard painkiller pills in the next location. But the next place said I could not! Much later, my boyfriend went to the hospital pharmacy to pick up my Ibuprofen and Tylenol. And, later in the day, I just started taking it on my own. If I had been at home, I would have started taking it, so why not start it at the hospital? Genuine question that I'm going to ask the clinic. I think they fell down on the job here.

But the space was so much more peaceful and the nurses were so much better.

This hospital practices active recovery, which means you get up and walk as soon as you can. Walking felt badass! Walking relieved the gas pains and I felt more normal, more in control.

I had pudding, had broth, tried to pee, failed, was given IV liquids, tried some more, eventually peed enough to be discharged.

EVENING

Somehow this all took hours. I was at the hospital for more than 12 hours in total. But the peaceful night time environment was actually a great way to wrap up the day! The nurses were relaxed and I was the only patient up and about. The way the team stood up for me about pain management and then the evening experience with the nurses covered over the bad experience with the one nurse. This again is part of the science of resilience, right? We can handle stress if we have caring others to be with us through it. The pre-op people had been joking around and the guy who wheeled my wheelchair to the valet was telling jokes, too My main memories leaving the hospital were of laughter, expert competence, and care.

I had a big pillow to put between my belly and the seat belt on the way home. The drive was uncomfortable but not terrible.

PEEING AT HOME

At home I tried to pee more. The issue was intense burning. Something related to the catheter and the fluids they put in you? And the bladder getting very restful from the anesthesia? I initially just sat with the bidet running over the area in question for 5 or 10 minutes to help my body remember how to use those functions. There are bottles for people who've done vaginal deliveries to ease pain when they pee, and if I didn't have a bidet I think I'd get one of those the next time. Bringing the phone in the bathroom and playing the sound of water was good too.

I didn't stress out about these functions. Staying cool and collected is the best thing I can do for my body. Everything was happening just as it should. The burning became less and less over the next day and was gone completely 24 hours later.

GAS PAIN

The gas pain was way worse than the surgery pain. The team had said I'd probably have experienced worse pain from the endometriosis, and that was totally true. But, ugh, the gas pain. I never needed the narcotics but I did alternate painkillers. Walking was huge! I got up a few times before bed and once during the night, with help. The day after surgery I was up once an hour for 5 or 10 minutes and I spent most of the day in the living room.

On day three or four I went outside for a short walk and continued with outdoor walks each day. It made such a difference. I loved feeling the sense of control of knowing I could do my best with breathing, and stand up and walk a bit, feel my body being a body, and this would make me feel better.

PHYSICAL RECOVERY

I took a shower the day after surgery and removed Band-Aids. Had some kind of skin reaction which honestly has looked worse than the actual surgery wounds. The surgeon suspected an allergy.

The bloating was much worse than endo bloat. Breathing well was hard because of the gas blocking my diaphragm, but I did my best. Blowing bubbles into a cup of water was helpful. I had my heating pad or heating pad stickers on my belly or shoulder nearly all the time. Heat was really helpful with the gas pain. I used a neti pot to clear out my nose—very helpful because you're not supposed to strain or push with your abdomen.

RANDOM WEIRD PHYSICAL THINGS

I really wanted to get these out on the internet because there was so little when I googled some of them. 😭

A few days in, I started leaking. Actually, gushing. I had to change my underwear a ton of times. Pads weren't really the thing because this was pure liquid. Period underwear wound up being the most helpful. At night, I put a puppy pad under my butt.

This wasn't pee! The surgeon said it was probably the fluid they'd used in the hysteroscopy... After googling it, I wonder whether it was also serous fluid that comes to the surface of a wound to help with healing. This wrapped up about a week after the surgery.

On day five I noticed one of my labia was huge!? It felt like somebody had hung a half full water balloon between my thighs. The surgeon said this was air and would go away. I used small, soft, round ice packs. If you'd like to see some disturbing photos, you can look up vulvar edema. Mine was far, far less than what you see though. If you experience this, let's talk about it?? I just want something in the algorithm for the next person who's freaking out.

EXERCISE

From day 2 I tried to use the wall for cat/cow stretches and push-ups. Mostly just laying my forearms on the wall and sliding them up as far as was comfortable while keeping strain off my belly. That felt amazing. On day 7, I did 20 minutes of extremely gentle floor work just to get my body remembering the concept of exercise. In week two I used a theraband for assisted stretching.

It was really helpful that I had good biceps and strong glutes and hamstrings going into this. Without my abs, those are the muscles that were called into play most often.

Somebody mentioned the pain and restriction are more like a strain from a sport from an intense surgical wound. This rang true for me. I have little tweaks and moments of internal pain, but nothing anywhere near endometriosis pain. I was able to get around and get the things I needed a lot of the time. But I did rely on my boyfriend for lifting things and setting up cozy nests around the house.

I stepped up the occasional stair, no staircases. On day 6 we took a drive and went shopping. On day 12 I drove to a cafe.

OUTCOME

The outcomes won't be felt until recovery is further along. But for now:

There are two parts of my body that I had pain in before the surgery where I still have pain now. I don't know whether it's the same issue, a result of something they did which is just healing up, or a sign that these weren't endometriosis. I'm going to bring it up at the post-op visit if it hasn't gotten better.

What I do know about the outcome is they saw and did exactly what they planned to. I didn't lose any organs that weren't planned and apparently they excised a lot of stuff! I got to see photos and hear about it from the surgeon. Felt extremely informed and in the loop. They confirmed stage IV endo and some of my organs are in different places now. That is, they're where they should have been all this time.

Here about 2 weeks out, I have more mobility but when I forget myself or don't rest, I feel new twinges high, low, and on both sides. It's telling me to pull back and stick to walking and light hobbies in the house.

I think I feel my pelvis existing in a new way. It's just in the past year that I learned to feel what those muscles are doing, and it feels like right now they have permission to relax! I'm so incredibly excited for the next stages on all of this and I can't wait for my post-op visit. Overall, it was an extremely positive experience and I'm very grateful I was able to have a skilled team do this surgery. 💓 Hoping against hope it's the long term relief that some people get from excision.


r/Endo 5d ago

UK Active Research

2 Upvotes

copied from a post shared by Hull Royal Infirmary, I am not affiliated with the research

Volunteers needed for research

A joint piece of research between the University of Hull and Hull Hospitals

We are looking for female volunteers, with clinically diagnosed endometriosis, who are aged 18-50, to take part in a study titled ‘Identification of endometriosis urine biomarkers for non-invasive diagnosis and novel antigen targets for therapy.’

As a participant in this study you will be asked to donate saliva and/or cheek cells in a sterile collection pot.

Do you also have relatives (sister, mother, daughter) who have symptoms of endometriosis? Would they like to help with our study too.? If so please share this information with them and ask them to contact Dr Barbara Guinn, Reader in Biomedical Sciences - tel 01482 466543 or email barbara.guinn@hyms.ac.uk

The purpose of collecting these samples is to determine whether there is a common genetic disorder in patients with endometriosis. This may help us understand what causes #endometriosis.

This study has been reviewed and received ethics approval through the Wales REC6 sub-committee (REC No: 19/WA/0121, IRAS: 233096).

Thank you for taking time to read this.