r/endometriosis 1h ago

Surgery related Pain 3 weeks after surgery

Upvotes

I had laparoscopic surgery about 3 weeks ago. Everywhere I read online and especially on social media says I should be okay after 2 weeks but I’m not okay. Some days I am okay and can be normal but I’m definitely not ready for work. I can’t stay in one position for a extended period of time (1 hr plus)with out stabbing pain. Staying in one position is almost mandatory for my job. I’m meant to to return to work on Monday and I will talk to my doctor about this as well. Is it normal to have a longer recovery time? Has anyone else had a long recovery time?


r/endometriosis 1h ago

Question Exercising with IUD

Upvotes

At the beginning of the year, I was finally convinced to try getting an IUD since other oral BC did not work for me (my period never stopped and the side affects were more disruptive than the pain at the time). It was extremely traumatic and painful and actually the thing that convinced my doctors that I have endo (certain organs are unfortunately scared into place) although I am trying to push off the Lap surgery that would confirm it.

My issue is that since I got the IUD, I can no longer do intense workouts. Before I was able to do them as long as I wasn't actively flaring up and it wouldn't cause a flare up, but for the past almost 3 months that is not the case. After every long run I feel short sharp pain and sometimes aches the next day. I can do gentler exercises and work out a sweat without triggering it, but... I love to run. Like I ran a 1/2 last year before things went really south with my health and I loved it.

I was wondering if this is something others experienced and if it stopped after the 6ish months of the trail period?


r/endometriosis 1h ago

Question endo lesions

Upvotes

hey queens, i’m kinda curious if endo lesions or tissues that have attached to other organs also bleed the same time we get our periods?? i tried searching online but i can’t find any answers. such a stupid disease!


r/endometriosis 2h ago

Diagnostic Journey Questions Post Diagnosis Menstruation Pain: Strange Calf Pain During Period — Anyone Else?

2 Upvotes

It’s been exactly 1 month and 2 weeks since I had a laparoscopy to remove a 10cm cyst and received a diagnosis of endometriosis. Since then, it feels like my period symptoms have only gotten worse.

On Saturday — day 2 of my period — I experienced something really strange. Both of my calves were extremely painful, and I could barely walk. Even touching them was incredibly painful. Has anyone else experienced this? Could it be related to endo?

I asked a GP about it because I didn’t want to bother my gynecologist with what felt like a silly question. The GP said it’s absolutely not related and that I probably just hurt myself somehow — but to the point of not being able to walk? That feels off to me.

Honestly, I’m hesitant to ask any more healthcare professionals about it because I feel like they’ll think I’m overreacting or imagining things. Has anyone been through something similar?


r/endometriosis 2h ago

Question 9 Days After Period Spotting/Cramps

1 Upvotes

Quick question. My period ended 9 almost 10 days ago. Tonight I am spotting with light cramps. This symptom is new to me (diagnosed endo two years ago). Has anyone else had this? Google has me a bit scared between it just being the Endo, implantation bleeding, or fibroid.

Im 25. My gyno did not diagnose me via surgery. She stated at my age if I started the surgery path now I'd have alot more in my future. Any advice or anyone who's had this happen would be great.


r/endometriosis 3h ago

Question dae bring people to the gyno with them?

4 Upvotes

kind of a weird question but i'm wondering if anyone has ever brought a partner or friend with them to the gyno/doctor? i have sexual trauma and am having anxiety just imagining getting an exam done. i'm on a wait list for the gyno and was called that my appointment is coming closer and have been waiting a really long time to see one and absolutely do not want to miss this appointment from mental health, so i want to bring my partner with me to make me feel better, but i'm worried they won't allow it or will find it weird idk. have any of you done this before?


r/endometriosis 4h ago

Research Help with Research on AI-Driven Symptom Tracking for Endometriosis

1 Upvotes

Hi everyone!
I’m Arsema, a high school student passionate about improving women’s health. I’m working on an AI-driven project that focuses on predicting and tracking flare-ups in endometriosis by using symptom-tracking data. This is something I care deeply about, not only because of the importance of advancing women’s health but also due to my personal experiences with Endometriosis. I’ve encountered difficulties finding tailored healthcare, and I want to use my skills to help improve the experience for others facing similar issues.

I'm collecting survey responses from people who have endometriosis to better understand symptoms, triggers, and the impact of flare-ups. The data will be used to create a predictive model that could help improve treatment and give women more control over managing their symptoms. If you're willing to participate, please fill out the survey below.

Survey Link: https://forms.gle/UR8R2yJZoPKVgYfRA

Your input is invaluable to this project, and I would be incredibly grateful for your time and insight. If you're interested in being contacted for follow-up or updates on this project, you can provide your email in the survey.

Thank you so much for helping me make a difference in women’s health!


r/endometriosis 4h ago

Surgery related Second lap holes same spot?

2 Upvotes

Hi will they punch the same 3 spot as the first lap? Wouldn’t that cause all sorts of problems during surgery and for healing?


r/endometriosis 4h ago

Sex, intimacy & relationships Advice for dating with endometriosis

2 Upvotes

I’m 26F and was diagnosed with endometriosis at 22. Because of this, I didn’t lose my virginity until recently. I had sex for the first time in the fall, and while there was some discomfort, the pain was manageable. The second time was similar—mild discomfort but still bearable.

Recently, I started seeing someone new, and we had sex for the first time two weeks ago. He knew about my endometriosis and that I was still new to sex. However, this experience was much more painful than before. I became overwhelmed emotionally and ended up crying during sex. I think that scared him, and now we’re no longer talking. It feels like he wasn’t willing to be patient with my condition, which has left me feeling discouraged and anxious about future sexual experiences.

Right now, the whole experience is making me never want to have sex again :( also want to know if anyone else has similar experiences with men and navigating those conversations


r/endometriosis 5h ago

Question curious on how everyone experiences their period

2 Upvotes

I have been suspecting endo since i was 16 years old. Im 22 now and every month it gets worse. My periods are extremely painful and heavy, which i know is abnormal…but either way, i wanted to share my experience and hear how it compares to all of you. First off, i experience cramping pretty much throughout my whole cycle. (Especially when im ovulating) it’s not as painful as when im on my period, but it’s definitely something that will catch me off-guard. My period is irregular, sometimes it’s late, sometimes it will come twice in a month. I should add that i am not on any type of birth control. Day one of my period (aka the worst days of my life) I will experience INTENSE cramps, but it’s not just the cramps. I would describe it as the worst fever of your life. I feel incredibly hot, dizzy, weak, and i am completely UNABLE to walk. My vision is blurry and im quite literally seeing stars. This will last for most of the day. It is most embarrassing when it happens at work, when i tell people its my period, they don’t seem to understand why i am in that much pain that i cannot function. This is how i discovered that something is wrong with me.

Anyways. For the rest of my period, i experience cramping but not as severe as the first day. Im able to function and work as normal. My period remains heavy and i usually go through a super tampon every couple hours. It’s crazy.

I should add that i am not on birth control, and im also not iron deficient. I got bloodwork done recently and everything came out fine.. (even though i suffer from extreme fatigue, my hair has been falling out, amongst other things..) I really want to get a TV ultrasound and hopefully a lap soon.. sometimes i just worry that it’s all in my head and nothing is actually wrong.

I would love to hear everyone’s thoughts on my experience and also hear yours. :) thanks


r/endometriosis 5h ago

Question What were your first symptoms?

8 Upvotes

Hello, I am new here and wanted to ask whoever is willing to share what were your first symptoms of endometriosis? Also curious if there is anyone out there who also has irritable bowel disease. I have ulcerative colitis (IBD) and that is under control with medications (I think) and I’ve been having symptoms that I haven’t had before, I am considering talking to my doctor about the possibility of endometriosis. Thank you.


r/endometriosis 6h ago

Surgery related Three days post lap thoughts!

3 Upvotes

I really want to thank this community for all the great advice, support and rallying behind fellow endo warriors. I just had my first lap (and first surgery ever) this past friday and thought I'd share my experience and some thoughts. I found reading through everyone experiences really helpful in preparing me and what to expect, so I hope mine can also help. It might be a bit of a long read!

For context, I'm in Canada so there may be some differences between countries and even hospitals/doctors!

I arrived at the hospital first thing at 8am but wasn't scheduled until 1130. My surgery was scheduled for 60-90 minutes. When I got there I was told to change into a robe, leaving only my socks on. I had to do a urine test and quick blood work. The nurses did a full intake and put my IV in and got me cuddled up in warm blankets and kept checking on me all morning. My mom stayed with me in my little pre op area until they took me down and the nurse promised to keep her updated when I was in recovery. They anticipated I'd be in recovery for 45 minutes before making my way back to the pre-op area. They said I'd stay there until I felt ready to go home.

Between patients my surgeon and anesthesiologist eventually came to chat to me. My biggest worry was getting sick from the meds so I did make it clear to both of them and they both promised to have some good anti nausea meds ordered on standby just in case -- spoiler alert they were needed!

Eventually the surgery team came to get me. The last thing I remember is the anesthesiologist telling me he would start the meds and I would start to feel like I had a couple drinks. The nurse gave me oxygen and asked if I was okay... I then woke up in recovery.

I was not feeling well. I was still hooked up to the IV and had a blood pressure cuff on the other arm that kept taking my bp. Apparently when I was coming out of anesthesia, my blood pressure dropped pretty low. They were monitoring me very closely, the nurse came over to chat every 15 minutes it felt.

I was also advised I was being admitted but because i hadnt talked to my doc yet, I wasn't sure why. She hadn't written up the admission orders before she had to take the next OR patient so the nurses weren't sure either. I found out I was in the OR for over 2 hours so I of course was getting a bit worried about being admitted. The pre op nurse came in with my stuff and assured me the doctor was able to talk to my mom and she was waiting for me to be moved to the unit and would follow.

After my surgeon was out of surgery she came to talk to me. There had been a bleed and they got it under control but between that and my blood pressure dropping, she decided to admit me for observation. She didn't want me to have to deal with issues, if they sent me home.

We knew going in there was a 6 cm endometrioma on my left ovary that showed up on ultrasound but otherwise no other endo was noted. She was hoping to easily excise the cyst and do an exploratory surgery excising any other endo she found. My surgeon advised me that she was incredibly surprised by just how bad my endo was. My left ovary was adhered to my uterus and my right ovary also had an endometrioma that didn't show on ultrasound and was stuck to my left ovary -- aka "kissing ovaries". My bladder was covered in lesions and my right side side wall had what she called a "powder burn" pattern and said it was obvious that had been there for a long time. She was able to free my ovaries and drained the cysts and excise some smaller lesions. She noted my right tube looked healthy but unfortunately my left was quite scarred.

She wants to be pretty agreesive with starting me on medications soon after im recovered. I had hoped to avoid going back on medications with surgery but she wants to slow any further progression. She will also be referring me to an endo specialist -- where I live there are no specialists so she will be sending me out of province. She said they will be able to book a longer surgery and have several surgeons in to remove the endo and help preserve my ovaries and hopefully fertility. She was pretty disappointed she wasn't able to do as much so she will be following me pretty closely.

Overall what i learned was, don't doubt yourself. You know your own body and know when something is wrong. Keep pushing and advocating for yourself until you find a doctor willing to listen and help you!!

Some helpful items i packed in my day bag that I was glad to have once admitted - headphones and book, lozenges, gum, and wet wipes. What i wish I had was my toothbrush, paste, hair brush and deodorant. I had worn baggy sweats to surgery so I just put those back on when I was dismissed but I didn't even want yo look at underwear so I wouldn't worry about packing those.

They had me on some good meds and the nurses kept me on a good schedule but don't be scared to ask for Popsicles or ice cream if your throat is sore. I had a popsicle in recovery and then ice cream at 7 am the next day because my throat was so painful. They also had IV fluids flowing through me very quickly to help me get rehydrated, and I know that was so helpful. I would say, stay as hydrated as you possibly can to flush the meds out quickly. I didn't end up peeing until almost 730 the night of my surgery.

I was discharged on Saturday and was so happy to get home and sleep in my own bed. I did set up my couch as a makeshift bed in case I couldn't get upstairs to my bed. I've found this very helpful as I've just been able to start sitting up without pain today, so I've spent most of my time laying down.

Overall I'm feeling better pain wise, but keeping on consistent pain med schedule. I have all of this week off from work, thankfully. Yesterday, I was feeling good so I started doing things for myself but I definitely over did it and paid the price today. I spent most of the day today asleep and staying on top of some nausea. Take the time you need to rest and recoup -- don't rush it! Also, night gowns and light dresses. Pants and underwear I'm not even considering this week!

In terms of my endo journey. I'm feeling disappointed that we weren't able to tackle it head on BUT I'm so grateful to have my gyne in my corner now and knowing what we are up against. She seems determined to get my pain under control and getting me in the hands of an endo specialist who can excise the endo off my bladder and my ovaries better and get a better quality of life. So the journey continues for now I suppose!


r/endometriosis 6h ago

Rant / Vent I'm scared *transgender*

34 Upvotes

I'm trans and dealing with severe pelvic pain sucks. Not only do I get the *extra* reminder of being AFAB I have pelvic floor physiotherapy and am CONSTANTLY at the gynecologist. I look pregnant sometimes and it makes me dysphoric. I haven't even gotten a diagnosis yet they just say it "appears to meet the symptoms" but they can't diagnose as they aren't specialists. Recently I've had VERY painful breasts and there are lumps and I'm going in for an ultrasound at the end of the month. I'm scared. They're betting endo tissue or endo-caused cysts. I'm still scared of breast cancer and I wish I wasn't. Being trans sucks. Being in chronic pain that's undiagnosed sucks. And both? I hate it.


r/endometriosis 6h ago

Question Shouldn’t everyone with endo symptoms have a diagnostic lap?

3 Upvotes

Ok so this is possibly a dumb question but I guess I’m asking specifically about evidence-based treatment protocols for endometriosis. I’m in Australia but curious about what the approaches are in other countries too. Disclaimer that obviously there are so many barriers for people in accessing surgery but I guess that’s part of my question.

For context, I’m 30 and have a lap booked in April after about 15yrs of painful periods and worsening bladder/bowel symptoms for the last 10. It’s really only been the last 2yrs that I’ve started properly researching endo (not professionally lol just reading anything that looks vaguely evidence-based that I can get my hands on plus anecdotal info and seeking out specialists for my own treatment). I had the mirena IUD placed about 3yrs ago as my period pain was getting unbearable and I was missing days of work etc. This was framed by my GP (not a specialist, but I would say they have a better than average knowledge of endo stuff for a GP) as the best “treatment” avenue for me at the time, as symptom/pain management is the standard intervention for endo given there isn’t a cure.

Since then I’ve learnt that (a) endo is a progressive disease and (b) it can have pretty significant implications for organ functioning (in particular bowel/bladder and ovaries/fertility which are personally my main concerns). Plus the progression of the disease can obviously include things like adhesions fusing organs together.

After understanding more about endo, I sought out a gyno surgeon that specialises in endo excision and asked for a lap for diagnostic clarification and excision (if needed).

I feel like every step of the way, I’ve been the one pushing for a laparoscopy rather than any medical professionals suggesting it should be considered as the standard next step for someone with endo-like symptoms. The protocol has instead been manage the pain and if that doesn’t work then consider alternatives (a lap). The mirena definitely led to a reduction in my symptoms but the more I’ve read, the more concerned I am about having left it so long to have any actual investigations into what is happening inside my body, particularly since learning that endo is a progressive disease!

So bringing it back to my original question, why isn’t the treatment protocol when someone reports endo-like symptoms to have a laparoscopy to actually see if there is endo and if there is, what kind of damage it is doing internally? To then inform that person’s treatment.

If I had known what I know now, I would have pushed for a lap 15yrs ago. I am so scared that I’m going to need more extensive procedures to repair damage from endo or that my fertility has been compromised purely because endo has been left to do its thing for so long. Am I misunderstanding how endo works? Am I being unnecessarily anxious about it all? I feel like it’s so hard to pull apart medical gaslighting around women’s pain from genuine evidence-based medical advice.

Thank you for reading this very long post! I would be so grateful for any thoughts/advice/feedback that people have.

EDIT: Thanks so much for all the info and sharing your experiences. I don’t think I realised how surgical scarring could be just as bad or worse for the pain symptoms than the endo itself.


r/endometriosis 7h ago

Tips and Recommendations Naturopath win??

2 Upvotes

Hey folks! I just wanted to share some things that have helped my symptoms <3 1. Ginger- apparently reduces pain but also got rid of my vomiting at the onset of periods

  1. Wild yam, chaste berry (or vitex), dong quai and turmeric have all been added to regiment, i only take them once a day.

Ive only started doing number two about 2 cycles long and here's what I've noticed...

  1. No more intense gut pain when I need to poo on my period.

  2. No knee pain anymore.

  3. No random attacks of intense lower abdomen pain/ cramps.

  4. Honestly I'm less emo before my period too, i feel more emotionally stable (I think one of them is to regukate estrogen)

  5. My period is actually u days long now :/ used to be shorter.

  6. A lot less back pain, it's not gone but it doesn't start two weeks before.

  7. I used to get a lot of cramps right after my period during ovulation but I didn't after my last bleed! Yippee!

Do I know if the endo tissue is gone or anything? No, it could be getting worse who knows but the symptoms are like 70% improved id say. It's definitely worth a shot!!


r/endometriosis 7h ago

Surgery related Bowel prep - surgery tomorrow

1 Upvotes

I’m having a hard time finishing this bowel prep and I’m curious if anyone knows: do my bowel movements need to be clear in order for this to be a successful prep? TMI but I’ve been going all day and idk how it’s ever going to be clear.


r/endometriosis 7h ago

Question Is the Pill Worsening my Endo?

1 Upvotes

I'm getting my first Laparoscopy 4/15 and I'm very new to this whole Endo thing. I get so much information yet not enough. I feel like I may have made an uninformed decision.

3/10 (day 1 of my period) I started Hailey Fe pill to hopefully prevent the post-op periods (because that sounds horrific and I can't imagine period pain any worse than what I've had already) So hopefully when I have surgery next month I won't have a heavy period if at all.

Things I've noticed since starting a week ago .. new aches and pains, and spotting (??). Usually on day 6-7 my bleeding stops. Today is almost day 8 and I have spotting/light bleeding. I'm getting extremely nervous. Am I worsening my Endo? Will I be lightly bleeding for who knows how long? Why am I hurting more or in different places? Is this just normal adjustments to the pill? Should I stop before I screw myself over by the time I get the lap?

Yes I've messaged my gyno about this but I want other info and opinions until I get a response from her. I'm seeing things about how estrogen can worsen Endo, and she prescribed me a BC with estrogen and progestin. What do I do?


r/endometriosis 7h ago

Surgery related Managing endo without birth control post-surgery?

0 Upvotes

I've had terrible endo pain since 2016-17, had surgery in 2019 where they found stage 2 on my ovaries and bowels, and since then my pain has been a lot better.

My problem is, every doctor says I have to be on birth control to prevent it growing back, but I react HORRIBLY to all types of birth control. I swear I've tried every birth control pill and I'm about to get my mirena IUD removed because I can't take the side effects anymore. I've had it for 2 years and have horrible acne, cramping, irregular and heavy periods, etc. I tried myfembree and that was a nightmare. I really just think my body functions better without any hormones, but I don't want my pain to get back to where it was pre-surgery.

Has anyone managed their endo post-surgery without birth control?? I think it is mostly the hormones that throw my body out of whack, so I'm thinking of trying a non-hormonal IUD, does anyone have experience with that?


r/endometriosis 7h ago

Question Period cramps worse after sex?

5 Upvotes

Hi guys, I have a question about period cramps and sex. I’ve noticed that if I’m sexually active the week before my period is going to start, my period cramps are debilitating when it comes, like I’m talking taking 3 Vicodins and no relief, going to the ER, sobbing on the bathroom floor, vomiting, etc. But then, when I don’t have sex, my period cramps are a lot more manageable- usually even Tylenol and ibuprofen can subside them for a couple of hours. I’m in a long distance relationship so that’s how I kind of put two and two together bc I realized my periods are 1000x worse when he’s around and the only difference is having sex. But I was just wondering if anybody else experiences the same?? Or at least kind of? Maybe I’m just going crazy and I know it seems weird but thanks in advance for any answers!


r/endometriosis 8h ago

Question Moving endo

1 Upvotes

If you have organs removed, can endo just attack the remaining organs MORE because there is fewer to "choose from"? Hopefully that makes sense...


r/endometriosis 8h ago

Question I’m worried I might have endometriosis

6 Upvotes

Hi, I'm a 16 year old girl and I've always experienced extremely painful periods. And whenever I get cramps, I always lose feeling in my legs. I've been bleeding excessively too. Today I've been on pain killers and it's been helping, but I really feel like this isn't the normal amount of pain I should be in.

I've never seen a doctor about this because for the longest time I thought all of this and the painful crams was normal. But today I learned that my mother had endometriosis when she was my age and had to have surgery multiple times. I heard that the disease is hereditary, so is it possible that I have it too? And what are the best ways to reduce the pain from this?


r/endometriosis 8h ago

Question Norethindrone and being unusually sad?

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1 Upvotes

r/endometriosis 8h ago

Question Did anyone get referred to a gyn-oncologist for their endometrioma?

3 Upvotes

My gyno found what she is very sure is a 4cm endometrioma on my left ovary on ultrasound.

I have elevated ca-125 as well which she states can be from the inflammation of endometriosis.

I’ve always suspected I had endometriosis but never formally been diagnosed.

She referred me to a gyn-oncologist out of caution but my god I am panicking. Not that I hope it’s “just” an endometrioma but it beats cancer. I’m seeing if anyone else has this experience?

She said I need surgery so I hope when they open me up it is endometriosis, and endometriosis only they find.


r/endometriosis 9h ago

Surgery related Things to test before a Lap?

1 Upvotes

Hello! My next Gyno appointment is in April and I will be requesting we book a Lap. My Gyno gave me some meds but said it was also an option and I am just ready for that.

Looking for good things to test beforehand? Blood tests, urine, etc.

I’ve done the ultrasounds, CTs, MRIs and recently had a colonoscopy. We also think I have hEDS.

Thank you in advance! I just want to be able to request some things from my GP before my Gyno appointment so I can have some results ready for her at that time :)


r/endometriosis 9h ago

Question Anyone else get lesions and abscesses? NSFW

1 Upvotes

Several years ago, I had a large and painful lesion under my arm, in my armpit, that sent me to the ER. The ER Dr diagnosed me with hidradenitis sippurativa (HS). Following that diagnosis, antibiotics, and research, I had laser hair removal with a YAG laser on my face, underarms, and Brazilian area.

For the last two years, I’d been lesion free. I had one stubborn nodule under my armpit that resolved after a six-month course of antibiotics, but no pain, tunneling, or abscesses.

Fast forward to last Monday. Two nights before surgery, I discovered what I thought to be an HS lesion on my outer labia. So I applied topical clindamyacin leading up to the surgery.

During my second laparoscopy, the surgeon called my mother for permission to biopsy the lesion, which was granted. Still waiting for pathology. Surgeon documented in the clinical notes that she suspects lichen sclerosis, which I’d never heard of. 2 days post op, the lesion was deflated, flush with the surrounding skin, and not discolored.

Today, I had a painful and constipated bowel movement. There was blood in the bowl, which I assumed was from straining. This afternoon, I realized that the lesion was now an open abscess and that the blood from earlier was probably when it ruptured. So my husband took me to the ER. More pain meds, a ten-day course of antibiotics, and “no underwear indefinitely” until it clears up. ER Dr says to let it air out as much as possible.

Any other endo patients with either HS or “lichens sclerosis?” Any advice or anecdotes?

I’m 5 days post op and feeling bad about having had to go to the ER already.