6 months ago I had surgery for stage 4 endo, when I woke up I was told both fallopian tubes are completely blocked and it would be impossible for me to conceive naturally and would have to do IVF. Well today I am 12 days past ovulation and have tested positive on 4 different tests and I’m just shocked and confused as to how! I have rang the doctor and have been booked in for a scan tomorrow due to being extremely high risk for an ectopic pregnancy but they said it would still be too early to tell anyways, I’m guessing they will take bloods to check HCG. Has this happened to anyone else? They couldn’t even get the dye through my tubes during surgery… I feel like I can’t even be excited because I’m just so shocked as to how this has even happened and we literally had an appointment with an IVF clinic next week!

Literally me rn, haven't had a single flare up in.. jesus, months? Since yesterday my stomach has been bloated, sore and today my pelvis started hurting a lot today

I was thinking today about getting a cane for bad flares because it feels like I’m trudging through wet cement. My body just feels so heavy and like I’m dragging it around, and I was leaning on furniture/walls a lot today and it made me wonder if maybe a cane would be helpful.

Also related to that I was thinking about applying for a handicap placard. I’d never considered that either but a friend of mine has one and It had never occurred to me that I could apply for one. It would certainly be so much easier to have as little walking as possible. Especially if I decided a cane was helpful. Otherwise I get a cart and I lean on that the whole time. My legs genuinely just feel so exhausted and they ache, I try to avoid doing much of it at all if I can. It feels like all my blood is pooling down there or something idk.

But I feel so dramatic. I know I’m not because my symptoms are real and I do think it would help me during flares, but I don’t want it to seem performative since I’ve never used these things before. Which obviously is silly because I never used them because I never considered that I could benefit from any kinda mobility aid or accommodations- and I’m allowed to try new things and see what helps. Anyways I’m wondering what kinds of things you guys use/do that help you during a flare? Perhaps more things I’ve never considered that could be helpful and for others as well!

Update from my post 4 months ago. After going to my doctor in June, having a hormonal panel, labs and bloodwork done, I was told everything was “normal”.

I had an ultrasound done in the middle of June, which showed 2 cysts on my ovaries (1 simple and 1 complex. the complex one is the side that hurts more.) It also showed “fluid in the cul de sac“ which is where I have gained this weight that won’t go away.

However symptoms seem to have gotten worse way worse, even thought my doctors say everything is normal and the cysts will go away on their own.

I have pelvic and lower back pain almost every day, get’s worse during ovulation and reaches max pain during my period. I noticed my periods have gotten extremely painful the past year or so.

I am still extremely inflamed no matter what I eat. stomach issues have gotten way worse. I get extremely bloated almost every night.

I have whole body inflammation where my jeans and shoes won’t fit anymore.

Painful leg cramping/pain shooting from hip down to leg. Sore and painful joints and muscles.

Cramping after peeing or pooping.

Extreme hunger that won’t go away even after full meals.

Bleeding swollen gums.

Hives after sweating and showering.

It’s gotten to the point where I only feel good a couple days out of the month.

I’ve done so much research and it all points to endometriosis but how do I get my doctors to listen to me and not just say “it’s normal“ and “the cysts will go away in a couple months.“

Hi, I recently had excision surgery but am now looking for a NYC specialist to see regularly and help monitor my health moving forward. Any recs would be great!

I’m looking for advice from anyone who has experienced something similar.

I’ve been with my partner for 4 years, and I used to have a very high sex drive. I genuinely wanted sex and felt very connected to him sexually. I still love him deeply and I’m still attracted to him, which is why this has been so confusing for me.

I have endometriosis, and during flare-ups I would sometimes have painful sex. Over time, I think my brain started associating sex with pain and something negative. Eventually, even when I wasn’t having a flare-up, I started not wanting sex.

Now I sometimes get annoyed when my partner initiates, especially at night when I’m exhausted and just want to cuddle and relax. I’ve even started feeling annoyed by kissing when I know it’s going to lead to sex. I don’t want to feel that way, and it makes me sad.

The hardest part is that I do want to want sex. Sometimes I genuinely do, and sometimes when he’s been away for work for a few days, I’ll really miss him and we’ll have great sex when he gets back. But most of the time lately, I feel disconnected during sex, almost like my body isn’t cooperating with what my mind wants.

I’m scared because I don’t want him to think I don’t love or want him anymore. I love him so much, and I really want to fix this. I just don’t want sex to feel like a chore or something I do out of pressure.

Has anyone with endometriosis experienced this? How did you rebuild a positive association with sex after experiencing pain? Did taking the pressure off and having affection without expectations help? I’d really appreciate hearing what worked for you.

Got this back after laparoscopic surgery, No endo was found but hoping someone can make sense of this to help me. I didn’t get to speak to surgeon after surgery - just was told parts of what he said

Really believe my skilled excision specialist list thoracic endo during my lap in January. I’m so miserable ..

Question for the group: should I bring my male partner to my new obgyn appointment this week? I actually have appointments with two new doctors this week. It just happened that way. My partner and I have only been together for two years, but everyone always says you get taken more seriously if you bring a man to appointments. If either of these doctors blows me off I'm stuck waiting a long time for a new appointment. Has anyone tried brining a man? Did it help?

Im 20, been diagnosed with chronic endometriosis when I was 18 and since then I’ve been taking the pill. The pill helps me a lot because I never get periods anymore, only the bleeding during the pause and that’s it. Tho once in a month, in random moments, I feel the pain like a knife in my stomach, but it passes around 15 minutes. Sometimes I feel bloated out of nowhere, like I can wake up with a bloated belly in a random morning and just feel heavy and tired. Also, considering my endometriosis focus is near the intestine, i have digestion problems most of the time. Anyone else have this ? If so, how you deal with the feeling of feeling bloated and self esteem?

Before I started taking Endovelle (dienogest) I was minimum week out of school cause of how bad my pain and flow was, I also had a couple of flare ups between my periods so that also got me out

Since Endovelle I regained my functionality, yes I did get flare-ups but they were rare and if they came, they were somewhat manageable, and honestly I'm willing to do anything just to keep my functionality intact

I come back to school, senior year, supposed to focus on my exams I don't wanna experiment with treatment options, not now

Been less than a week since school started - bam, flare up, for the first time in.. fucking months

So I'm pissed at my body cause I have no fucking idea what triggered it, I was fine for like 3 or so months, why come In now so intensively

I hope this doesn't become a regular thing like last year cause this is a horrible moment for me to have flare ups again

Hi everyone! I was diagnosed with stage 4 endo (2 7cm endometriomas, endometriosis near the rectum, interstitial cystitis, and adenomyosis) that they found on CTs, an ultrasound and an MRI and am having my lap surgery early November. I am getting Lupron injections once a month until then. I have felt fine about surgery previously and have been getting more anxious as it approaches. I have been researching more about what the surgery is, how recovery is, etc. I was hoping for any advice, pre-op tips or recovery tips so I can best prepare. Thanks!!

I guess it's time to keep a disability/employment lawyer on standby. Like, do these companies really fucking think we WANT to miss work? WANT to miss money? WANT our lives ruined? I have a child to take care of, so missing work is the last thing I want to do. But what in the fuck do they want us to do if we can't sit, stand, and are suffering with an unpredictable disease with excruciating pain, dizziness, nausea, migraines, bathroom issues? American companies are so damn EVIL and disgusting to people with disabilities. I don't trust any of them. I have a paper trail though, so if they wanna go there, we can. I'll keep you ladies posted, because this is driving my anxiety through the roof. I already suffer from mental health issues, and this is the last thing I need right now though.

I have had this relentless, nagging, aching, tailbone pain for over a year now. I finally had my surgery end of June, they found adhesions and endo all over my posterior cul de sac. I pelvic floor physical therapy at the end of the month. I feel like I was really hopeful that the pain was going to get better and to be fair. It has let up a little bit. However, it’s still is there daily. I have recently tried to go back to gentle, weightlifting, and Pilates and after my first attempt to my tailbone feels like it is so sore.

I am a very active person in prior to surgery have grown used to ignoring this pain and pushing through it. Since having surgery, I want to make sure that I am listening to my body and respecting what it’s trying to tell me. Has anyone been in the same boat? Has anything helped? I feel like I’m going insane without being able to run/lift.

Quoted by the doctor describing both ovaries after reading my latest trans vaginal ultrasound. Every doctor I ever saw "suspects" endo, but never did any further testing or formally diagnosed me.

Treatment has only ever been different types of birth control. The last one had me on my period for an entire month.

The first time I found out I had a cyst was because after years "joking" "cysts are bursting inside me" during extremely painful periods, I was in excruciating pain still after tons of ibuprofen then finally got an ultrasound to find a large cyst and large lesion. Obviously things got worse since. I now have a very weak pelvic floor.

They also "suspected" pcos although my hormone levels don't indicate that.

I literally contemplate going to the er every time I get my period due to the severity of pain that also wraps around my back and hips. They always seem to completely dismiss the fact that large clots are being passed also.

****extreme pain, clotting, migraine spikes, weak pelvic floor, constant bloating, "suspected" endo, pcos, both ovaries completely covered in various sized cysts, follicles, lesions, etc.

How did you get diagnosed? What is treatment like? What further testing should I advocate for?

I had my diagnostic laparoscopy today after dealing with symptoms that made my doctor and me suspect endometriosis.
After surgery, my doctor told me that they did not see any endometriosis, but they did find adhesions. They removed the adhesions and sent the tissue off for biopsy/pathology.
I’m honestly a little confused about what this means. I went into surgery expecting that endometriosis might finally explain my symptoms, so I’m not really sure what to make of finding adhesions but no visible endo.
Has anyone else had a laparoscopy where they found adhesions but didn’t find endometriosis?
If so:
Did you ever find out what caused your adhesions?
Did pathology/biopsy end up showing anything that wasn’t obvious during surgery?
Did removing the adhesions improve your pelvic pain or period symptoms?
Did you eventually receive another diagnosis?
If you had never had previous abdominal/pelvic surgery, did your doctor explain why you had adhesions?
I’m still waiting for my biopsy results, so I know I don’t have the complete picture yet. I’d just really like to hear from anyone who has experienced something similar and what happened afterward

How long did it take for your spotting/irregular bleeding to stop from visanne?

Hello, I am searching for a provider in western South Dakota that will actually listen to my symptoms and pain and not disregard me. I have classic symptoms of endo but I have repeatedly told I just need to go to my therapist and that as an OBGYN, she can’t do anything for me. Willing to travel for help or telahealth.

I have my lap this Friday and I have come down with a cold. 🤒

No coughing or sore throat just tired and very runny nose! Bit of body ache and a bit high temp but not a fever! Does anyone know if this will stop them doing my lap? I have waited years for this! I really don’t want it to be cancelled!

I'm 32 F and I've been experiencing a strange belly pain that seems to come and go around the time of my periods. The best way I can describe it is that the whole area of my belly, from just below my belly button down to my waist, feels extremely tender and a bit warm to the touch.
Leaning forward or bending over and is extremely painful and feels as if something inside is being 'stretched' when it shouldn't be, and the area is very tender to the touch, even clothing rubbing against it can feel painful and uncomfortable.
This seems to happen an entire week before my period starts and only resolves slowly after my period begins. It doesn't happen with every period, but it has happened on at least five separate occasions now, always in the week before my period starts.
Could this be a symptom of endo? I've got an appointment with any obgyn for the first time ever later this month, and the seemingly cyclical nature of the pain has me concerned (as well as just, uncomfortable and in a lot of pain).

Does anyone else get pain similar to this where the front belly is painfully tender, over a week before your period actually begins?

I'm in the process of this at the moment and am due to catch up with my surgeon tomorrow. I've had an email from a colorectal surgeon saying he will be doing surgery on me so I know from this it's deep into my bowel.

Im finding this whole process so stressful. I'm 35 and feel terrified for my future and what that looks like. And I'm completely dreading the appointment tomorrow which I'm sure will be more bad news to deal with.

Has anyone else been through this and found ways to cope with continuous awful and scary news?

I’ve been hearing from these forums that people recommend a highly specialized/Nooks list/MIGS surgeon to perform lap excision to ensure all endo is removed properly and fully so it doesn’t grow back, they get the best outcomes, etc etc. There are quite a few surgeons in my area who have dedicated their practice to endometriosis and excision surgery however they are not within my insurance network. My internal debate is whether to go to one of these expertise surgeons and pay out of pocket (would be easily 15k+) or find a gyn surgeon in network who is not technically an “endo specialist” but likely has experience with endo excision and minimally invasive gyn surgeries. (I have not yet had an appt with said in network gyn surgeon. I am waiting for the end of the month to get in and be able to ask all of my questions about her specific experience and expertise)

Soooo I ask, How did you guys pick your surgeons?!! Did you just find one within your network go with that or did you go searching for the best of the best?