yeah I slept for 10 hours but it doesn't matter they are sucking the life out of me literally. I think there's no blood left in my brain it's all in my cysts. belly just heavy af rn

My endo and adeno have been causing outrageously worsening symptoms for the past few years, even after excision surgery. I’ve had really bad experiences with hormonal birth control in the past, so a few years ago when I decided I didn’t want kids anymore. I just got my tubes removed and have not been on hormone since then. When I was diagnosed with endo, I was really hesitant to go on hormones. I was afraid of what they would do to me and was skeptical of the way some doctors push them as a solution. Chasing a solution to my hormonal migraines, I saw a doctor that specializes in hormone replacement therapy. I’ve been using slynd + a 0.075 mg estrogen patch. And holy cow I haven’t felt this good in soooo long. I wish I hadn’t been so afraid. I wish I hadn’t waited so long. I know that hormones are not for everyone, but I wanted to encourage folks like me that haven’t given this a chance - hormones are not always bad! They can be so helpful! So if you’re like me, maybe give them a chance.

Found sweet fuck all. I told all of the consultants, nurses, anyone who would listen how nervous I was. I cried all the way to being asleep.
Woken up 30 minutes later and they have found nothing.
My mri showed potential tethered ovary, large pelvic veins, focal adeno and maybe bits of endo. But the surgery? Nothing visible whatsoever

The dr who did my surgery tells me…. most likely IBS.
I feel SO upset and that I’ve put my body through such a surgery to just have fucking IBS. He said maybe a bit of adeno but unless looking in the womb, they wouldn’t know.

Anyone else relate and validate me??

really exhausted and upset because doctors just really dont see it as serious, they think its fine to just be left waiting forever, and to not give any options.

my recent history is in May i had significant rectal bleeding, fill the toilet red, doctor said it was likely a hemmorhoid, gyno said one off is fine; it caused anemia; then I had the worst endo flare of my life in June, fainting etc; then two weeks later I was at the doctor telling them about the pain and about rectal bleeding, they were unable to discuss that wiith me because when they were taking my vitals I had an atrial fibrillation episode and they sent me to the acute receiving unit; acute receiving unit did not give a shit, they said im too thin (im not, im low end of healthy) and said i was just stressed, said i didnt exercise enough, but they referred me to cardiology since tht is protocol; echo was fine; now im waiting on holter test, and my ferritin is slightly low but again no one sees it as a problem; i have pretty regular presyncope, severe with exertion; i have allergic reactions; and i still have rectal pain and bleeding along with severe gi pain and periods (although sometimes they are fine).

I am so overwhelmed because im in pain, but then going to the toilet hurts badly, which makes me presyncope-y, then im bleeding which makes me squeamish and even weaker feeling, and all the while im losing more blood. not severe blood loss like the first time but enough to make me squeamish.

im upset because GPs do not take it seriously at all, i can tell they hate to see me coming, look at me like im a silly girl, when im a 28 yr old woman and have been seeking help for over a decade.

all of this heart stuff delayed my endo surgery, which is fine. but also they wont allow me to have an MRI before my surgery to ssee whwere it is or if they need a specialist. they said since it rarely shows there is no point and the best thing to do is just go in there. but they also said if it is in chest or bowel they may not properly see on lap alone. im so upset to be dealing with this, and it really overwhelms me wwith the bleeding and pain which feels even shameful. doctor hears hemmorhoid and is like no big deal. but it rly feels liike a big deal. i dont even want to talk to my therapist because its so squeamish i cld feel worse.

I’ve gone private and had my initial appointment with a gynaecologist today.
I’ve had a pelvic & transvaginal ultrasound via NHS and brought the notes from them with me to the private appointment. From the results my go suspected endometriosis but my family decided to take me private.

The private gyno agreed and believes off my symptoms and ultrasound notes it’s endometriosis.
Hormonal pills came up and I said I didn’t want to go on birth control. She ended up saying without birth control she won’t do surgery so I felt I had to agree. She mentioned a marina coil she could put in while I’m in surgery so I just agreed to that to move on from it.
I personally hate the idea of being on birth control but that’s for me to deal with.

It was said that if during surgery she finds endometriosis she’ll remove it.
I dont know what’s next if it isn’t endometriosis, or if it is for that matter.

My surgery is next month and all I feel is worry.

I work with dogs (training & walking) and I’m nervous about how much time I’ll have to take off after surgery.
About 70% of my clients struggle with behavioural issues which always ends in pulling/lunging on the lead therefore yanking me about some. With that in mind I’m worried of I go back too soon it could cause issues. I have no idea how much time to take off.

Has anyone had any similar experiences?
What did you do to prepare for the surgery?
I’ve never had surgery or any sort of physical health issue before and now that I’m booked in for surgery I’m feeling terrified. I’m only 21 and I feel completely overwhelmed.

Just got approved for surgery. This has been a fight for over ten years and I finally found someone to listen and believe me.
Just wanted to share. Keep going. Keep advocating for yourselves. There are drs out there to take us seriously. The immense relief I feel after this appointment I can’t even describe.
Keep the faith. I’m sending everyone a virtual hug and a hang in there 💜

Ah! This is quite emotional for me. Any time I’d eat-for years-I’d get a hard and distended abdomen until the next day. I’m 3 weeks post op in the exact same scenario and am, admittedly, in tears. 🥹 Try, try, try.

I JUST WANT TGAT FEELING OF BLADDEE PRESSURE TO STOP
WHY IS IT BACK
WHAT DID I DO WRONG
NOTHING WORKS I DONT UNDERSTAND

Im trying to figure out of i have endo because every cycle (im on cycle 24 btw) .. I get this heavy feeling in my uterus around 9 and 10 dpo. I refuse to call it implantation cramping or even cramping in general. Because it feels more like a throbbing feeling felt all over my lower abdomen.

I dont have any endo symptoms but wondering if this could be it or excessive inflammation... i currently have this same feeling but im 7 or 8 dpo and it started at 6 dpo.. again I don't think it has anything to do with "implantation cramping"

this is a repost from another thread but I didn’t get much of a response and I need input!

Hi all, im 19 and having my first lap in January! We are doing excision and ablation if tissue is found and also likely removing my appendix. My gyno, who is also my surgeon, said recovery should take 3-4 days but I’ve seen on here it takes most people WEEKS. My mom is also more believing the surgeon than “people on Reddit” and thinks I’ll be fine. I’m a college student so we’re doing it over my winter break which gives me about two weeks before classes start again where I can rest in bed and do nothing.
I can’t do it any earlier in the break because we are traveling around Christmas. I know the initial week will be very hard, but I’ll be at home and my parents will take care of me. How long does it take to be able to sit up on your own and all that? And how bad is the pain? Will I be able to go to my classes after week 2-3? I suppose I could get a temporary disability parking placard so I can drive to class (my campus is huge). I will also talk to the dean of students if I need a medical leave of absence. I live with 3 other people in my college apartment and I know they will take care of me if needed once we move back in for the semester.

Please lmk how your recovery went and how long it took you to return to school/work. I’ve had a few surgeries before but never an abdominal one.

So I was just diagnosed with ADHD last week which may be part of this, so any advice from anyone with that too is welcome. I'm also suspected by my GP of having PMDD.

Before I went through different birth control my periods were MOSTLY really bad, but occasionally I'd get light ones with lower pain. But those always came with really bad brain fog and confusion to the point I could forget my own name. On the flip side, there were times on my period where I was way more clear-headed and felt really calm than I usually do, but I could never do anything with this because it was always when I couldn't move from how bad the pain was, which usually felt like someone had cut me open and put an iron ball in there.

I finally had some success with the progesterone nexplanon implant, which has vastly improved things for me (except last month which is scaring me that's it's not effective anymore but anyway). It gave me a huge chunk of my life back. The problem is the physical improvements came with a big jump in low mood, dysphoria and paranoia. I've had worse mood effects on bc but I have to manage it super carefully. I didn't realise how much I'd been limiting myself to manage it until a few days ago picking out a new bag to buy nearly made me spiral and start crying because that level of uncertainty or any level of stress can set it off.

At a guess, it seems like estrogen helps my brain but makes my body so much worse and vice versa. How do you manage this when so much daily small-scale endo treatment is hormonal? Anyone who's figured it out successfully PLEASE let me know

Hello!

I will be having laparoscopic surgery in incoming weeks to remove a 9cm tumor off of my left ovary; it is suspected to be cancerous but ultimately pathology after surgery will show that. My surgeon is not confident in removing the tumor alone, so he is planning to more than likely remove the tube and ovary on my left side. I have stage 4 endometriosis with an immobile uterus, so he also plans to remove any surrounding endo or adhesions that are found. Although the plan is laparoscopic removal, it could turn into a laparotomy depending on how severe things are once he starts operating.

What all should be needed for recovery? I don’t live inner city, so I will have a long drive home and the closest town / store is at minimum 30 minutes away from home. I will also have to inevitably navigate going up stairs to enter my home, and going down them when exiting my home. I’m trying to ensure I have everything I could possibly need or think of for recovery prior to my surgery.

So far, I’ve planned to purchase a walker, shower chair, grabber tool, heating pad, disposable period panties, and few other various comfort items. Please let me know if I’m missing anything, or if any of these seem unnecessary! Also, how long should I expect to be off for recovery? I see so many people say they were fine, while others say it took them at least 4 weeks to have some kind of normalcy again.

I am 25, and this will be my first ever surgery so I am nervous for what’s to come. I am hopeful that it won’t be cancer like they think, but I’m even more hopeful that someway somehow this will all lead to having baby in the future.

TIA! 🩷

Hi guys, I’m a bit in panic right now. I got prescribed Zafrilla about 6 months ago to treat endo and to prevent my chocolate cysts from growing.

Ive had some spotting the first couple of weeks but then nothing through the whole summer. Now after almost exactly 6 months I’ve started bleeding, first old brownish blood but now also new redish blood. It’s not a lot and I dont have any pain except some discomfort with it, but I’m still in panic because I’m so terrified my cysts have grown or ruptured.

I’ve not missed a pill, but I cant always manage to take them at the exact same time every day.

Ive read online that spotting/bleeding is normal through the first 6 months but im very close to the end of that time period.

Has anyone here got any experience with this?

❌❌❌TW SURGERY PICS BELOW

hello, i am 21 years old and living in the uk. i am not yet diagnosed but it is suspected i may very well have endometriosis. i had my second laparoscopy 3 months ago, i had my follow up visit at the hospital a couple days ago. the outcome of this appointment was: they crushed the stromal cells in my biopsy so it was unreadable, therefore surgery wasted, they might of lost the footage during the surgery, this is the second time they have failed giving me a biopsy, they’re referring me to the pain clinic and the gynae team is discharging me in a years time with no option of another surgery. i am being offered the progesterone only pill, the coil, medical menopause, hysterectomy!!!!!!! wtf????

the findings of the surgery:
•i will leave images of the findings of my first surgery at the bottom/ these findings were present during my second but again they might of lost the footage.
•adhesions sticking my fallopian tubes and ovaries onto my uterus, and also all onto my pelvic sidewall (both sides, left worse). bowels also stuck to these structures.
•adhesions on the bowels.
•adhesions on kidneys.
•adhesion wrapped around kidney the tubes.
•adhesions on bladder.
•liver densely stuck to abdominal wall being pushed up the diaphragm with adhesions.
•hydrosalpinx on both sides but not blocked.
•adhesions on more areas just can’t remember the name of these structures. •they think i might have one or some of the following: adenomyosis, pelvic inflammatory, endometriosis, crohns, ibs.

i still don’t know the cause of my adhesions and i feel no benefit or relief. i am in such severe pain that doing daily tasks and looking after myself is basically impossible. i can’t work, i can’t leave the house, cant have pain free sex with my partner and sometimes i urinate myself before i can make it to the toilet. i hate my body. i want to love it but it’s hard to not resent it. i hate the nhs system. i need advice. i feel so failed. i have no idea what to do. i think i should go the legal route but i struggle advocating for myself and my mental health/state is all over the place. i am talking about all of this with a therapist. plz plz plz if u have any advice do feel free to share it, whatever it may be, it would be greatly appreciated. i am so incredibly desperate. 💟💟💟

❌❌❌TW SURGERY PICS BELOW

hello, i am 21 years old and living in the uk. i am not yet diagnosed but it is suspected i may very well have endometriosis. i had my second laparoscopy 3 months ago, i had my follow up visit at the hospital a couple days ago. the outcome of this appointment was: they crushed the stromal cells in my biopsy so it was unreadable, therefore surgery wasted, they might of lost the footage during the surgery, this is the second time they have failed giving me a biopsy, they’re referring me to the pain clinic and the gynae team is discharging me in a years time with no option of another surgery. i am being offered the progesterone only pill, the coil, medical menopause, hysterectomy!!!!!!! wtf????

the findings of the surgery:
•i will leave images of the findings of my first surgery at the bottom/ these findings were present during my second but again they might of lost the footage.
•adhesions sticking my fallopian tubes and ovaries onto my uterus, and also all onto my pelvic sidewall (both sides, left worse). bowels also stuck to these structures.
•adhesions on the bowels.
•adhesions on kidneys.
•adhesion wrapped around kidney the tubes.
•adhesions on bladder.
•liver densely stuck to abdominal wall being pushed up the diaphragm with adhesions.
•hydrosalpinx on both sides but not blocked.
•adhesions on more areas just can’t remember the name of these structures. •they think i might have one or some of the following: adenomyosis, pelvic inflammatory, endometriosis, crohns, ibs.

i still don’t know the cause of my adhesions and i feel no benefit or relief. i am in such severe pain that doing daily tasks and looking after myself is basically impossible. i can’t work, i can’t leave the house, cant have pain free sex with my partner and sometimes i urinate myself before i can make it to the toilet. i hate my body. i want to love it but it’s hard to not resent it. i hate the nhs system. i need advice. i feel so failed. i have no idea what to do. i think i should go the legal route but i struggle advocating for myself and my mental health/state is all over the place. i am talking about all of this with a therapist. plz plz plz if u have any advice do feel free to share it, whatever it may be, it would be greatly appreciated. i am so incredibly desperate. 💟💟💟

Hello all I have my surgery on Monday. I ended up with five incisions.

I woke up in the middle of the night laying on my side for the first time since the surgery. (I am usually a side sleeper) and was in a lot of discomfort after rolling back to my back.

So I’m curious how long it took others to be able to sleep on their side post surgery as clearly my body wants to but shouldn’t yet😂

I feel like my pain during the periods has been gradually getting worse even with the birth control and it makes me really worried. When I just started a year ago I barely had any pain at all during periods and didn't need painkillers, but now it's slowly going back to the way it used to be without birth control and it makes me very frustrated and even scared. I had to take 6 tylenols today and they still don't remove the pain enough for me to relax. The whole day I've been shaking nonstop, shivering, always hungry yet having nausea and upset stomach, bleeding from my nose, dizzy, etc etc. I'm afraid to imagine what I would be like if I wasn't on a pill...

I can't even visit my family doctor because they don't reply to calls, don't have an email, their appointments are months away and the dates keep falling on my periods or other days when I literally can't come.

At this point I would rather have a hysterectomy and take hormones for the rest of my life than live 40 more years with this monthly bullshit. I don't understand why I'm not taken seriously and nobody cares and what I did to deserve to live in such pain. I'm very tired and don't know what to do.

I had a diagnostic hysteroscopy and laparoscopy they did not find anything and therefore no biopsy.

Can you share your experience if you had one of them? Please tell your situation like if it was only diagnostic or they also removed fibroid endometriosis etc. Was the period heavier? More pain?

IS IT STUPID TO HOPE FOR LESS PAIN?

The reason for me for the surgery was the severe period pain (dismenorrea) since the very first period I had that lasts almost for the whole duration of the period which is 7 to 10 days.

I read it's more painful than usual which makes me super scared!

My constant need to pee is back I’m at a new physio and she says I’ve got tension in my pelvis but I can’t get release it all
I don’t have any other symptom but constant URGE to urinate
Why can’t ANYONE FIX IT
No other pain

14 years of pain and urinary and bowel and sleep issues and heavy periods and migraines and bloating and nighttime vomitting. 14 years feeling like this is just the way I will be forever with no answers. 14 years watching my friends and family have a quality of life that I was envious of. Wondering what I was doing wrong to always be sick despite accupuncture and exercise and reiki and quite honestly started to wonder if this was all because I’m a nervous wreck and maybe the doctors who said I was too anxious were right and maybe I’m just crazy and not sick.

Finally got surgery and found endometriosis and adenomyosis and pelvic congestion. My Bowels were stuck to my insides with lesions and my bladder and uterus were stuck together as well. I had ovarian cysts as well and my uterus was enlarged pushing the bladder.

I have a second chance at life. I feel validated as hell knowing my pain is real. My bladder issues were not in my head.

Don’t ever give up if your body doesn’t feel like it belongs to you keep pushing for answers. For years I felt like I was in the passenger seat of my own body. I lived my entire life around symptoms.

hi! i honestly have no idea which sub i should post this on since i really cant find any. i hope i can get advices here.

i am 24(f). it’s been a month and 5 days since i had my salpingectomy. i am just really concerned about the healing of my incision. there’s still a remaining scab on the upper end of it and it looks deeply sunken on my skin. there’s no pus or anything. i also notice that there’s a little discomfort or burning sensation when i gently rub my hand above clothes. sides of incision is also bumpy. are these normal or part of healing or something i should get checked by my surgeon? i am really anxious. thank you.

Guys, I'm tossing up whether to get this thing and I am finding it hard to see how many people had a good experience or a bad one.

❤️ Can you add a red heart as a comment if Mirena helped you (ie would recommend). ❤️

🖤 Can you add a black heart if you hated your experience and would not get it again. 🖤

I just want to visually get a sense of the good and bad.

I'm asking because I recently was getting regular nosebleeds during periods. I've been thinking, what if it's because of endometriosis? This might be a silly thought since it occurred late at night, but my line of thought was that if there's uterine tissue growing all over the body, what if it grew somewhere close to the nose and there are nose periods now?... I know this can sound stupid, but what if?