I had lap surgery on Friday (10/25) and it went well - they removed an endometrioma cyst from my left ovary which confirms the endo diagnosis. I stayed in the hospital for one night for observation due to oxygen levels.

Today is day 6 post op and I still have severe sharp pain in my lower left abdomen. When I bend/twist even the slightest or make certain movements it feels like my stomach is being torn open. It’s really awful. My incisions look and feel fine and otherwise, I feel much better each day in terms of overall energy/health.

Has anyone else experienced this type of post op pain? I talked to the surgeon’s office today and they’re gonna order a CT if the pain doesn’t improve tomorrow.

Hi! I was hoping someone could help me answer a few questions while I decide if I should make a new appointment with my doctor on Monday.

I (25YO) was recently diagnosed with endometriosis. It was kind of an accidental finding too. I went to the ER back in mid February for abdominal pain, CT showed that I had appendicitis, surgeon biopsied some stuff that was questionable to her, results came back as endometrial tissue that was attached to the appendix, chocolate cysts, and blood in the omentum. Looking back now, I realize that I had all the symptoms of endometriosis but didn’t think much of them and kind of learned to “deal with it.”

Fast forward a month, I met with my gyno who I was following pretty regularly for painful and heavy periods pre-Covid, and then was referred to again. She started me on Hailey COC continuously (no 1 week placebo pills) for a few months until I had my transvag/transabd US in June which found a few endometriomas.

I started having some spotting while on the continuous Hailey COC so she changed my pill to Cryselle about 6 weeks ago. I’m still on it continuously and never missed a dose. I started having some light spotting last Friday night and it slowly became a little heavier. Still not enough for me to wear a full pad or tampon, but enough that my panty liners are getting full like twice a day.

I called my gyno on Tuesday with these symptoms and she said to just continue the pill for another 2 months, and that it is just my body adapting to the med change. Does this warrant another check up with my gyno early next week or are these normal symptoms of getting on a new medication? This is my first time ever using hormonal birth control since my surgery early this year so I am still very new to everything.

Thank you so much!

I had a laparoscopy to remove a cyst on my ovary and endometriosis about two months ago. I always had very painful periods that made it impossible to live my life or even move at times. I thought that this would improve significantly after the surgery but my first two periods after the surgery have felt even more painful at times. I usually bleed for about a week, my periods are heavier than they were before the surgery and during my period I can't leave bed most days. Some of the cramps have felt like a knife in my stomach and I've considered needing to go to emergency. Is this level of pain normal for the first few periods after surgery? Will it improve? If the endometriosis was removed why am I still in this much pain?

Going in, I was really struggling with anxiety. It was really bad. A part of it was due to a traumatizing experience with general anesthesia from when I was a child. Another part was due my experiences in medical settings with advocating for myself with calling and checking a few times whether they had put in the request for an ASL/English interpreter to the point where I had no idea going in whether I will have an interpreter.

Last week, I even saw one of the interpreters who works with that particular contracted interpreting agency whether she was able to see my request, and call to check for me. She wasn’t able to get an answer for me.

That’s one thing with being a Deaf person. Despite being proactive, the answer is always maybe. Maybe there will be an interpreter. Maybe not. Who knows? Not important stuff, right?

So, I was a nervous wreck.

Yesterday far exceeded my expectations.

An in-person interpreter showed up, and she was quite professional throughout.

The entire medical team had a really good system in place, and took the time to check in with me, and explained everything.

They even allowed the interpreter to scrub up and interpret in the operating room until I was out.

And… And…

Get this…

I had a CODA RN assigned to me in the recovery room.

I can’t tell you how much it meant to me to be able to directly, and fully sign with someone else while I am waking up from general anesthesia, and still feeling quite disoriented.

It all ended with full access in the recovery room!

And the CODA RN was sweet as to put some thought into various monitor placements where she tried to put what she could on my feet, or legs, so I could have my hands and arms free as much as possible.

So I also woke up with pretty much having free hands and arms except for one IV.

I told her she is a change agent, and should teach other medical professionals what to do when they have a Deaf patient.

I just wish my experience would be the new standard for other Deaf people.

And they did find endo. I will post another update after a few days about what worked and what didn’t for me in recovery.

I had surgery in July where my doctor found stage 3 endo. I had relief for about a month and the pain is back now. I’m not willing to get another surgery because I was left with bad adhesions and I’m off worse than I was before. I’m wondering if anybody has tried acupuncture for their Endo pain? Did it work? Any other natural remedies for the pain? I’m open to all ideas

These October plot twists just don’t stop, do they?

RANT:

Got my first laparoscopy last friday morning, everything went good. My nurses were great, everything was good! They found stage 1, more on my peritoneal wall, and my bladder was inflamed.

and then my throat starts hurting after the anesthesia tube. then 3 days post op, i developed a cough.

The cramps have started (idk if i’m supposed to be ovulating or not, i believe i am) and now the pain is just awful and I’m pretty sure I have cold because this cough is killer. I have a toddler so yay daycare germs and i also live in TN so yay unrelenting weather changes.

Overall: insanely depressed? Tired of this? Just straight up hasn’t been a good time.

& it’s Halloween, it’s raining, and I couldn’t manage my pain (or sick whatever this is) enough to watch my baby trick or treat.

Good news: So my surgery went really well. My right ovary was removed due to ovarian cysts and my left ovary had endo on it and was connected to my colon which the surgeon removed the endo and repositioned the left ovary so it wouldn't be connected to the colon. No cancer!

The not so great news: so I had surgery on October 21st. I'm currently having severe back and hip pain to the point where bending over to pick things up really hurts. Also my sugerical areas are bruising. I'm not sure if any of this is normal so I called my doctor and I'm going to see what they say.

I just had my first surgery today. They found endo, cysts, and adhesions. I feel so validated after 10 yrs of dealing with this. I was SO scared going into surgery. I was crying all of pre-op and even had a panic attack. They gave me a warm blanket, cold towels, a fan, and essential oils to help. (Also gabapentin pill). I cried right before they put me out but a nurse was holding my hand and comforting me. I think the anesthesiologist just knocked me out fast since I was freaking out so I appreciate that. He didn't even count down I just remember holding the nurses hand and then I was out lol. The staff was AMAZING. I'm terrified of medical setting and IVs/needles. My entire experience was really good. So even if you're scared do not let it hold you back! My pain is pretty minimal right now but I'll see how I'm feeling tomorrow. If yall have any questions about the whole experience let me know! I'd be happy to calm some nerves 😊

I had my diagnostic laparoscopy this March, where the doctors removed a fibroid and also diagnosed me with severe pelvic congestion along with early signs of adenomyosis. I’ve been on a 3 month cycle with Provera 10 mg - I stop for my periods then I’m back on the medicine. It actually has helped my pain go from like a solid 9/10 to like a 5/10 on a daily basis. However, due to the current amount of pain still hindering my life, my gynae has suggested Letrozole.

Now thing is, he suggested me that right after I asked him if hysterectomy is an option since I don’t plan on having kids. He refuses to put me on birth control too and then he gives me a medicine for fertility? I have been reading about the medicine combo helping people with adeno, but I’m also just quite sus of the healthcare system in the developing country I live in.

Should I be sus? He also has me on metformin 2000 for weight loss which I also felt iffy about but then read it helps with inflammation? Am I wrong to be this sus? Should I get more opinions or does this all sound reasonable and I’m overthinking it?

Also if anyone has any experience with this combo, what were the side effects?

I’ve been diagnosed with Endo for 4 years now. I have been on hormonal pills. And I have severe pain on my left pelvic side down to my foot. Do you guys also feel pain after peeing? For me I always have to wake up on wee hours having to pee and after that I get that severe pain that I couldn’t go back to sleep anymore. I’m worried that I just kept relying on my pain killers for a brief relief. I’m actually getting kinda addicted to my pain killers.

ok so i’m on my way home from my lap i just had earlier. turns out….no endo. although there’s no endo my surgeon found out that both of my ovaries were extremely large and were almost the same size of my uterus.

so i currently have no pain relief for what i’ve been experiencing and i have to go back to the gyne while we wait for the results of my biopsy

I’ve always had occasional pain around my uterus with certain positions. I haven’t had surgery to confirm an endometriosis diagnosis however, I have a lot of cysts and Polyps in my ovaries. Recently, I’ve experienced irregular bleeding as well. Most recently, I had one of the most painful periods I’ve had in many years!!! My doctor was able to prescribe me a 10 days hormone pill to make the irregular bleeding to go away but I’m still experiencing the painful sex especially with DP… any suggestions on what position to try or maybe oils or medication that would make the uterine pain go away and sex more enjoyable?

hi everyone! i had my lap in april and arguably my periods have gotten worse?? maybe that’s just me being dramatic but at a minimum they have stayed the same. has anyone experienced this or have any insight? my ob confirmed endo post surgery but even with removal my period pain has remained the same. i’ve actually had heavier periods & random bleeding throughout my cycle more frequently post surgery.

i guess my main question here is : is it worth it to get a second opinion? if i go this route i will be seeking someone who specializes in endo.

i could also just go full hysterectomy but thats a lot for me to digest and would also most likely mean being on hormones moving forward which idk if i really want to do that either.

any insight is appreciated! sidebar: if you have any OBs that specialize in this area in ohio, pls drop the name below 🫶🏻

Background - the last 18 + months I’ve been suffering from endless spotting and month long periods despite being on continuous birth control to skip my period help my PMDD symptoms. I’ve been on several continuous birth controls and still experiencing the bleeding.

Other continuing symptoms getting worse - stomach pain, cramping, pain in left lower abdomen, lower back pain, leg pain, heartburn, intensifying skin itching, brain fog, weakness and extreme fatigue/utter exhaustion, bloating, constipation. After having a normal ultrasound and being dismissed by my OBGYN’s NP that the bleeding wasn’t a concern, I separated my bleeding and GI issues. I was seeing a GI specialist and even though a CT scan showed nothing, I was sent for a colonoscopy to rule out everything else. My colonoscopy was normal with the exception of a precancerous polyp removed. I went sent on my way.

Except I was still dealing with bleeding and all The other symptoms so something told me to contact my OBGYN and bypass her nurse practitioner and folllow up with the doctor because I couldn’t shake the feeling that maybe this is all related and shouldn’t be overlooked. That’s when she decided she wants to do a laparoscopy to check for any endometriosis. I’ve never noticed these symptoms getting worse around my period, they’ve just gotten worse as time goes on. I’m getting very nervous to go under and not know what they’re going to find or what I’ll wake up to. How often is ovarian cancer missed on both an ultrasound and a CT? My surgery is in 6 days and it’s all happening pretty fast. Is there any tell tale differences? I know I’ll find out soon enough.

Hey everyone! I hope this is the right sub to be asking this question.

I am a 23/F. I started my period at 11 years old, and from the very beginning they have always been very painful. In my teenage years my periods were very painful (made me nauseous/wouldn’t go away unless I had a heating pad) heavy, and lasted 7-12 days and were very irregular (every 32-50 days) From the ages of 13-22 I was on birth control which helped these symptoms. I’ve been off of birth control for a year now because my husband and I are trying to conceive. My cycles are now SUPER regular (every 28-31 days) medium flow for 2 days then light flow for the next 3 days, but every other month my cramps are the usual excruciating cramps. At age 19, my OBGYN said I had high prolactin, but no tumor was ever found. After some lifestyle changes is when my periods became very regular. It has been 6 months of TTC and we have had 0 luck. I’m starting to worry it could be endo. Does this sound like endo? Or is it possible to just have painful periods? I feel so lost :(

I first suspected this could be endometriosis 2 days ago. Before this, I had both a calcium and vitamin d deficiency.

I’d been suffering with lower back pain which I attributed to work. My periods had stopped previously for 8 months and the doctor said it was probably the vitamin deficiency.

They started up after being given a mega dose of vitamin d for 3 months. Then they stopped again. 6 further months of no period until the beginning of this month which was for a whole 5 days. Then to my surprise I had another on my birthday (of all days) 29th October.

I’ve never suffered with painful periods which is why this last one took me by surprise. I’ve had 2 children before and let me say, I thought I was in labour. The contractions were horrendous. So much so that I asked my other half to stop at the next supermarket and get a pregnancy test to rule it out because it felt exactly the same.

I spoke to my sister about this today and she told me that both her and my other sister have endo. So could it be the same for me?

How will the doctors diagnose it?

Many thanks

*just to add: there are lots of black flecks when wiping. These do not look like clots.

Hi all, suspected endo here - I’m on day four of my period and this morning I had this sudden and terrible rectal/anal cramping and aching pain - has anyone else experienced this?

After years of horrible pain and begging for a diagnosis, I finally have a surgery date, which is about 4 months before my wedding. Exactly how bad of an idea is this? From what I’ve read, most people feel fine about 2 months after surgery, but I mainly want to avoid extreme fatigue issues or severe pain on my wedding day. All thoughts appreciated!

Hello,

I’ll try to summarize my situation below:

About me:

• Age 28
• same-sex marriage
• all fertility labs perfectly in range
• never smoked, drink maybe one drink a month if even, exercise 5xweek

About fertility:

• 3 failed IUIs
• 3 failed IVF cycles

About IVF cycles, on average:

• great meds response
• ~20 mature eggs retrieved
• ~12 fertilized normally with ICSI
• all growing well until day 3 then everything arrests between days 4-6
• never made any blasts except for 1 day6 BB which was aneuploid

This is a terrible result for someone my age and I’ve been told my eggs look dark, grainy and have issues with the cytoplasm.

I’ve been on literally all sorts of supplements for the past 6 months that it feels like I’m just throwing money away.

Doctor thinks I may have Endo, but he also thinks removing it wouldn’t improve egg quality.

Has anyone been in a similar situation or heard anything about a case like mine?

I am in a shared risk program and I only get one more cycle to try, if I don’t make one euploid embryo this next cycle they will end my participation to the program and that will be the end of my fertility journey. Hence, I am desperate for answers.

TIA

Hi! I'm waiting for my surgery (all of the above) and was wondering whether anyone who has had surgeries also got a pelvic wash and/or their falllopian tubes/ovaries checked for cancerous cells?

I have a brca mutation so I just wanted to know whether I have to mention this to the surgeon or ask for it specially. (The surgeon is endo-specialised.)

I'm scared I'm going to miss something.

Just got my first ultrasound in 6 years. I’m so blessed that everything came normal. My ovaries are perfect, my uterus is perfect. SO lucky. My doctor completely disregarded endo though. She said they’re a fluid in the ovary that would be able to catch endo and she said it wasn’t there. She said to find a GI so that’s what I’m doing now. I just don’t see how it could be a GI problem since I have pain during sex and ovulation.

She kept saying her and the ultrasound tech had no idea why I had discomfort during the pelvic ultrasound.

Has this happened to anyone? Should I give up on endo?

She also said call if the pain gets worse as if the pain hasn’t been getting worse this year.

I had my surgery just a couple days ago and recovery has been pretty great? I was worried because of some of the stories I’d read online, but honestly, I think I have more energy now four days post surgery than I ever had pre surgery.

It all feels like a dream.

The fact that this chapter of my life is closed and done, I mean. Horrible periods is something I’ve been dealing with my whole life. I got my period when I was around 9 or 10, and it has always been really heavy and abnormal. It worsened over time until it reached the point I would be bleeding for two weeks at a time consistently, and the pain would have me nauseous, crying, and unable to move at all.

I’d gone to so many doctors hoping for answers, and last year I even landed in the hospital where they told me my blood pressure had gone dangerously low, but they ran every test imaginable and I didn’t seem to have anything wrong with me.

My boyfriend was incredibly supportive and pushed me to keep trying other doctors (my mother suffered from the same as me all her life, so she saw it all as normal lol) until I found a great one who diagnosed me with endo and wanted to operate on me to confirm it. My surgery was scheduled less than a month out from my initial appointment- which is crazy to me, it all happened so fast!

Endo was found in three different spots and my surgeon was able to remove it all without issue. Apparently my colon was also becoming attached to my pelvic wall? Has anyone else experienced something like this?

Anyway… Yeah.

I’m feeling extremely grateful right now. Vindicated, too. For so long I felt like I was going crazy. Maybe this WAS normal, like the doctors told me it was for some women. Maybe I was being dramatic and I was totally fine like all the tests showed. But nope! It was endometriosis all along, confirmed! And now it’s out of me!

I just wanted to share my experience because stalking this thread helped me so much during my journey :) if anyone has any questions I’ll gladly answer them. I’d also love to know if other women had the same issue as me with their colon, and how things changed for them post surgery?

Also, I got a Kyleena IUD implanted during my surgery, which my doctor says is supposed to help slow the growth of the endo. Does anyone else have experience with this? :0

Thanks for reading <3

Do you ever still feel like you're crazy even though you have a diagnosis? I was diagnosed via surgery in 2022. They found endometriosis on my right ovary, round ligament, anterior culdesac, and both uterosacral ligaments. They also found endosalpingiosis on my uterus. My pain is back and I'm miserable. I had an emergency appendectomy early Saturday morning but the report made no mention of endometriosis. I was unable to speak with my surgeons after my surgery so I don't know if they saw it but they didn't make note. I also know from the CT scan I had before surgery that there is a large cyst on my right ovary.

I just feel crazy all over again. What if the pain is in my head? What if I'm burdening my family over nothing? I hate feeling this way and I don't know what to do about it 😞

I had my laparoscopy yesterday and they found stage 2 endometriosis. I have been having pain since I was 13 and am now 22 and just want to know if only having stage 2 after that long of symptoms is normal. They also found it in my right hand side of the body and not the left which confused me as most of my severe pain and pain when not on my period is on the left side. I tried to ask and explain this to my doctor but was so out of it on medication I couldn’t properly communicate. I’m just seeing if anyone has similar experience or advice?

So my girlfriend thinks she has Endometriosis and so do I, she gets absolutely excruciating cramps, very heavy flow, pain after sex - sometimes during but this isn't really an issue for her (she tells me). Usually we're really good with communication and telling each-other how we feel and when she's having a really bad time with endo I try my absolute best to accommodate for her in every way I can. But a few times - probably once every 2 months (We've been together for almost 2 years) she resorts to getting really angry and upset with me no matter what I do (we both live with our parents and are trying to save money to buy a house together - we live 15 minutes apart by car) whether its coming over and just being there for her or me buying her flowers or her favourite chocolate or whatever it always ends up with her ignoring me in person or over text, or making me feel really bad about how I could do more. So I guess I have two questions, please please give me advice on how I can do more for her and help her, and my second question is, what do I do when she gets angry with me?

A bit of background about myself and our relationship:

Our relationship outside of this issue is really special - she makes me feel so understood and so loved and she tells me when these episodes aren't happening that I'm her favourite person in the whole world and that I make her feel listened to and so happy and so loved, so all in all its great really, I definitely can see us spending a lifetime together.

She is a very empathetic person and is so so lovely but is also stubborn and is very set on having things her way, she has had a number of really awful exes which I won't go into because that is her trauma and I'm not about to broadcast that to the internet but basically we both healed a lot together from really terrible past experiences. She is really clever, is really affectionate outside of these situations and overall is just really an amazing person.

We got through a "long distance" (some maybe would call it medium) patch where I was at university an hour and a half away and she had already graduated 2 years prior (I did a masters). At this time our relationship was a bit rockier - don't get me wrong it was still great but being far away from her wasn't ideal so I'd spend most weekends travelling back to go and see her.

I'm very "soft" people would say and I don't stand up for myself when I should so usually I end up apologising a lot, maybe too much. I struggle quite a fair bit with depression my self and have been in very dark places before, so I try and understand my best when these things happen as I know how difficult it can be when you're really down . I have a lot that I need to work on and am really trying to work on myself to be better with communicating, opening up with my own emotions. As I mentioned a little above - I had a terrible ex who would verbally and physically abuse me - so I had a lot of learning to do when it came to being in a healthier relationship.

At the moment I'm looking into going to therapy because I do feel that I have a lot of suppressed issues with myself but I need to build up some financials in order to go regularly.

Hopefully this is the right flare!

For background info, I am 27 and have been on Orilissa about 3 years with a few months break in the middle. I was actually on the break because I needed a refill and my phone anxiety was worse than my pain (post surgery so it's not as bad as it was), though my doctor said it can count as a break that is mandated to protect bone health (6 months for every 2 years on Orilissa)

During that break, I was prescribed Vyvanse and it helped tremendously, actually being on it is what made my phone anxiety go down enough to get a refill.

A few months later, and I find that while Vyvanse is still helping my executive dysfunction, my working memory is terrible. Sometimes multiple times in an hour I put something down and lose it seconds later, I'm forgetting important things for school, etc.

I thought maybe it was stress, then remembered that menopause is known to make ADHD worse for women and how my doctor described Orilissa basically as a temporary menopause.

Has anyone else experienced this, and if so how did you cope? Would asking about upping my medication help? Does anyone know of any studies to read about this?

Trigger Warning.....................................

I've had off/on rectal bleeding for years with bowel movements even with using Colace. Although I have grade 1 hemorrhoids on colonoscopy which could have worsened over time, I'm convinced it's from the endo. Kind of a strange question, but has anyone had bleeding in their stool during a bowel movement that then triggered immediate vaginal bleeding leading to miscarriage? That's what happened to me this week. Everything started with my stool. I know I need lap, it just sucks it had to happen like this. Has anyone had the rectal bleeding, had lap and then had successful pregnancy?

For those with stage 4 DIE who had excision surgery, how long did you need to remain out of work to recover? Can you return sooner if just a desk job?

Hi. 4 days ago, My doctor found that I have Endometriosis in ovary and gave me visanne. I didn't know that I have problem before I did ultrasound. My symptoms were just including period cramps(but It always happened even before I get Endometriosis) and heavy overflow of bleeding.

but From last night, which was 3rd day I took Visanne, I'm experiencing cramps and heavy back pain. I want to take Ibuprofen but cannot sure if it's good idea since I'm also taking mental illness pills.

Does anyone experiencing cramps & back pain after taking visanne? It's making me worried since I didn't feel pain before meds.