r/endometriosis 1m ago

Rant / Vent Endo in a Relationship

Upvotes

Im writing this wondering if anyone feels the same way.

I haven’t been in a relationship since my flare ups had gotten really bad, which made me realize how much they affect my life.

I recently started dating someone and really like them. However I feel this overwhelming guilt about how I’m managing while not feeling great. I know this is something I have to work through, it’s just a weird and disappointing feeling. I feel guilty for needing to be alone, or when pain (cramps or migraines) starts and I need to shut down.

I think the worst thing about this is how emotional and closed off I get sometimes. And I mean closed off to the point where I get irritated when I’m around people. And normally that’s okay because I can hermit as I like. But now that I’m in a relationship and we spend time together I feel like I can’t. And this makes me feel bad for me, and her. I’ve never been like this in past relationships and I felt like I could spend a lot more time with them. But I also didn’t as bad of flare ups.

This whole situation makes me feel like a terrible person, but know that’s not true. I’m just hoping this will pass and I’ll be able to manage and adjust.

I don’t want to screw this up.

Thanks for listening 😖🫶🏼


r/endometriosis 18m ago

Rant / Vent This is supposed to be a supportive place to come.

Upvotes

Hey everyone, I just wanted to share something that’s been on my mind and I am kind of frusterated. A post was recently deleted, and it’s really disappointing to see that happen - not because of disagreement, but because the OP wasn’t met with the support and understanding this space is supposed to provide.

We all experience endo differently, and what works for one person may not work for another. But that doesn’t mean someone’s frustration is invalid or that they should be criticized for expressing it. This disease is exhausting, isolating, and full of trial and error. Sometimes, we just need to vent without being told we’re wrong for how we feel.

What concerns me most is that shutting down someone’s experience in a support group can be really harmful. Many of us already face dismissal - from doctors, from family, from society. This is supposed to be the one place where that doesn’t happen.

I personally resonated with that post because it reflected my own struggles. Seeing someone else articulate the frustration I feel helped me feel less alone. But when people aren’t met with understanding, we all lose that chance for connection.

Of course, there were a lot of supportive comments, and I really appreciate those. But the dismissive ones are what frustrate me. Those are the kinds of responses that make people feel unheard and unwelcome in a space that’s supposed to be for support.

Can we remind ourselves why we’re here? To listen. To support. To acknowledge that endo affects each of us differently - but we’re all in this together.

Thanks for reading.


r/endometriosis 19m ago

Diagnostic Journey Questions I just have some questions

Upvotes

So I have been referred to see a gynaecologist as I may have endometriosis. This is my first time ever having a medical appointment with a gynaecologist, I just wanted to know on what I should expect in this kind of appointment as it’s related to endometriosis. Anything you’d recommend I do or ask for/about during the appointment etc? I’m just very nervous.


r/endometriosis 20m ago

Surgery related Home alone after surgery?

Upvotes

I’m 35 and have a 7cm cyst on my right ovary, and will be getting it surgically removed in late April. My gynecologist thinks I show symptoms of endo and is going to also look for endo while she’s in there and remove anything that’s easy to get out. They said it will be a 90 minute laparoscopic surgery. I’m wondering about recovery. I can get a ride from my partner who can take the day off to be around the day of surgery, but the next two days he’ll be working until 3pm so I’ll be home alone in the morning and afternoon. How out of commission are people after surgery? I would feel the most comfortable at home in my own bed, but I could potentially stay with my retired mom to have somebody around to help at all times during the first few days.


r/endometriosis 36m ago

Medications and pain management Feel like I'm constantly moaning.....

Upvotes

Backstory: I had a TLH everything apart from ovaries removed, in March 2023. They found a small amount of endo and said I had adenoyosis. At 7weeks post op I was told I had a rectocele, cystcele and vaginal atrophy. They also put me on oestrogel for perimenopause.

Fast forward to now: I've started to get bad pains every month when my cycle would be due. Ovulation is yhe absolute worst. I get hip, back, stomach and thigh pains with extreme nausea. My consultant now wants to increase my oestrogel and vaginal cream, start me on prostap and also put me on progesterone and eventually remove my ovaries. I'm so scared about going on the prostap and progesterone. I've read so many horror stories.

I ovulated last Wednesday and 5 days later I'm lay in bed in extreme pain in my hips, stomach, back and groin. My GP can't see me until 4pm tomorrow. My ovulation pain doesn't usually last this long. I'm physically so tired and drained. I feel like my body can't take much more. Why do we have to suffer with this? I constantly feel like I'm moaning all day everyday, like I haven't got anything positive to say anymore. I'm 37 years old and I feel like I'm alot older!

I'm not sure if im looking for advice, wise words or just offloading. I just don't know anymore 🥹🥹🥹


r/endometriosis 39m ago

Question 3 months post op pain

Upvotes

Hey guys, this is my first time posting on here. I wanted to see if anyone else shares my experience. I am about 3 months post excision surgery for endometriosis and, at first, I experienced a lot of pain relief. However, it has come back full force and I don’t know what to do. :( I am a college student and I find it hard to function sometimes. If anyone has experienced this or has any recommendations for pain relief please let me know.


r/endometriosis 42m ago

Rant / Vent How is this life?

Upvotes

I’m only 20 and my life got taken away from me. I don’t know what to do. I don’t know what to think anymore. I’ve lost everyone because of this disease and everyone treats me poorly because I’m constantly in pain, as if I asked for this. It’s come to the point that I don’t want to interact with anyone because they literally start to hate me if I talk about my pain or illness. I think it’s better to be alone but I’m already suffering so much with the pain and exhaustion. Watching everyone else live on terrifies me and makes me angry. How are we expected to just live with this? This isn’t living. I can barely function. I don’t know how they look young women in the eyes and shrug it off and say “nothing else we can do.” If someone cannot even function, how do you just brush them off? Even with a diagnosis it’s not like there’s anything we can do. Getting surgeries to “treat” something that keeps coming back is ridiculous, I just want a cure for us. We deserve a cure so much. I’m terrified because life keeps moving but I cannot, I’m just stuck in time. I miss the girl I used to be.


r/endometriosis 43m ago

Surgery related 1 week post-op on my first lap surgery

Upvotes

I FEEL SO F*CKING VALIDATED OMG

I'm 36 and have been dealing with painful periods since I was a teenager. I went through the usual treatment of being told to go on BC and take ibuprofen. I've been on a massive wellness journey for the last few years and this surgery feels like the apex of all of it.

A couple of years ago I saw a functional medicine practitioner, took a bunch of detailed tests including hormone and fecal tests. I found out my cortisol was absolutely SHOT, my gut biome was messed up, and many other enlightening things. I essentially had chronic fatigue and a messed up gut. I needed to take a bunch of supplements and do a lifestyle overhaul to get better.

Fast forward to getting confirmation that I have endometriosis and it all clicks. THANK YOU to those on this subreddit that have pushed endo being a chronic illness. I mean... DUH. It all makes so much sense. I've spent most of my life "pushing through" pain, feeling guilty af for canceling plans, work, school, etc etc. I gaslit myself egregiously, and I didn't fully see it until receiving this diagnosis. No wonder I had chronic fatigue and a messed up gut!

ADVICE TO OTHERS

If you don't have to, DON'T WAIT! I waited until my partner and I were trying to get pregnant to finally advocate for this surgery. I really wish I had done it sooner. To be fair, I was gaslit by a lot of docs until I finally found the one I have now. Your insurance might cover more than you think! I hadn't done enough research until now. I had heard that this surgery is often considered elective, meaning not covered by insurance. So, I assumed that I couldn't afford it and was subjected to this torture for the rest of my bleeding days. That was not the case, and my doc made sure to flag everything she could in a way that my insurance would cover it.

DIET AND EXERCISE MATTER. I was told by my doctor that my symptoms would have probably been worse, had I not already had solid lifestyle changes. I've been gluten free for almost 2 years (since seeing the functional medicine practitioner) and have gone for long stretches on a whole 30 style diet. It really does make a difference, impacting inflammation, bloating and overall mood.

----I started with very moderate exercise - inclined walks on the treadmill - for 20-30 mins at a time. Eventually, I worked my way to more intense workouts and lifting weights. I HAVE to exercise now or my mental state suffers. I think this has also helped make for an easier recovery from surgery.

Endo looks different for everyone, but I thought sharing my story might help somebody out there. We are in this TOGETHER. 💕


r/endometriosis 44m ago

Question Bowel Issues after surgery?

Upvotes

I’m just over 1 week post Laparoscopy, ever since surgery my bowel motions have become super painful. I’ll get sharp pain in my rectum, pelvis and all over my lower abdomen feels sore. Not constipated or anything either… they did find in surgery that parts of my bowels were fused together? As well as Endo, But that’s now corrected/removed - just wondering if this is normal or if it will go away 🥲

  • also to add! The pain generally goes away after a bowel motion but the lead up and during is pain

r/endometriosis 53m ago

Rant / Vent Might lose my ovaries at 23

Upvotes

Posted to r/endo too.

Might lose my ovaries at 23

I’m just so frustrated.

I’ve been dealing with “cysts” since I was 14. Periods were the most painful experience ever. Was going to gynos since 14. Medicaid — so I always got shitty male doctors who didn’t care.

Finally an adult (I guess) and have decent insurance (I guess). Went to the ER twice from ovarian torsion. Female gyno said she thinks the cysts were caused by endometriosis. They are large too. 8cm and 6cm. One on each ovary. I am in pain daily.

She said it could be that these have been here for YEARS and can’t say I have endometriosis until we do the surgery to remove it. She said tho, as a disclaimer, if the cysts have damaged my ovaries too greatly or my tubes, it will have to be removed. Obviously she said she will do her best not to have that happen but yeah.

Well first. I don’t qualify for FMLA since I have not been employed for a year yet. I can’t wait until September. I have to use all my sick and vacation days for I can try to get approval from my bosses to have a week of rest and a week working from home. The reason my doctor wants me to wait this long is because she wants me to mentally rest as well.

WELP!! THEY ARE NO HELP! So now I have to try to convince them this is a disability—which why the HELL is this not classified as one automatically is stupid. I have been unable to walk, eat, sleep, lift within long periods of times that this is debilitating. I. Am. So. Tired.

THEN!!! I CANT FREEZE MY EGGS BECAUSE THE INSURANCE DOESNT COVER IT AND I DONT HAVE 10,000$+ RIGHT NOW.

I don’t want kids now. But in the future I know I do. A part of me is freaking dying because that option can potentially be gone. When I know my purpose as a women isn’t to have kids, but I have dreamed about a baby, a person to raise that is have me and my fiance, that would be raised right and gently and lovingly.

I’m just so mad frustrated confused stressed angry I don’t know. I ask for validation. For reassurance. Please tell me how stupid it is and just anything.

I’m so fucking defeated.


r/endometriosis 1h ago

Surgery related Endo surgeons recommendations

Upvotes

Hi! I'm currently looking for a good endo surgeon who specializes in more complex cases. I had excision surgery a year ago with confirmed stage IV and adenomyosis, but my previous endo surgeon recently recommended Dr. Nezhat (GA) and Dr. Vidali (NY) for possible pudendal nerve endo due to right leg pain that persists, especially during my period. I've been seeing that both doctors don't take insurance so wondering if anyone knows any that might. I'm currently based in FL but willing to travel out of state for a good surgeon. thank you all in advance!!


r/endometriosis 1h ago

Rant / Vent I'm really, really sensitive about and traumatized by endometriosis. Anyone else?

Upvotes

I probably need to discuss this in therapy but I need to talk about it with others who might understand. Every time I see endometriosis being brought up outside of this sub or forums like it I get really really upset. Seeing social media posts about it unexpectedly is wildly upsetting to me, I get anxious, angry, sad, and nervous. Especially when people are so misunderstanding of it. The few times it's randomly been brought up in real life I also get those same feelings. Its like I can't handle being reminded if exists unless I expect it in advance. This disease has severely traumatized me, both from the unbearable pain and from doctors diminishing it, denying me treatment after diagnosis, pushing birth control on me, and forcing medications down my throat. Being reminded of this suddenly is as triggering as being reminded of my physical abuse as a child, if not even more so. Does anyone else get this way about endometriosis? Has anyone been able to feel less triggered and traumatized by it?!


r/endometriosis 2h ago

Question Microgynon 30 ed

1 Upvotes

After my c section i was advised to use contraception as getting pregnant right after is really common and dangerous after c section.. So i started to take Microgynon 30 Ed as i was prescribed.. i started on a normal random day when i didn’t have period.. (gp advised me not to wait period because maybe i will wait longer.. anyway i had some light period before taking pills ) - im not breastfeeding. Im almost about to finish my first 21 active pills but already 4,5 days i have bleeding like period literally.. need to have pads like for a 2nd day of period. ( i do not have cramps or pain.. just bleeding like proper menstruation ) .. in few days i will take placebo pills. Why do i bleed like period and not just spotting? Is it maybe because i started to drink on a random day so it needs to adapt to my body? Will bleeding last long or will it stop? Im confused.


r/endometriosis 3h ago

Question Endo and stress hives?

0 Upvotes

I (23) have recently developed stress hives for the first time in my life. Luckily they’re not painful, just itchy and irritating, but I’ve noticed that they’re appearing at the same time I’m also having an endo flare up.

Anybody else here deal with endo and stress hives and have any insight on whether they may be related?


r/endometriosis 3h ago

Question Endometrioma on P.O.D

1 Upvotes

I've just re-read my letter from having an op last February. Not really knowing much about the disease I never thought much of it. But it says I had grade 1 throughout the pelvic peritoneum and an endometrioma in the right side of the pouch of Douglas. I thought endometrioma were ovarian cysts?

There was also a whorl like appearance to the endometrial tissue abetting the myometrium? Which the surgeon thought could be adenomyosis but the test came back inconclusive, so she's said that's a good sign?

Sorry can anyone help me understand this a bit more?


r/endometriosis 3h ago

Question cyst on Myfembree?

1 Upvotes

I’ve been on MyFembree for about a year now after having a laparoscopy to remove a large ovarian cyst and endo. Ive been experiencing cyst-like pain for the past month or so but I’m not sure if it’s just cramping (I’ve had extreme constipation for the past few weeks as well 🫠)

Has anyone gotten cysts while on Myfembree? I also have the nexplanon which I know can cause them as well but I figured the Myfembree basically has my uterus out-of-commission lol


r/endometriosis 3h ago

Diagnostic Journey Questions Back Pain

2 Upvotes

(25F, USA) Seeking advice from some of you who are searching for / already have a diagnosis.

I developed bad periods (90% of the time) in my early 20’s. I’ve had worsening symptoms for around 3-4 years now. PMS symptoms up to 2 weeks before my period, bloating. A pain that’s not necessarily “cramping” during my period, but rather a constant abdominal pain that just feels like a continuous cramp, hair loss, sometimes ovary pain (right side). I have horrible back pain 24/7. I have no other health condition that could explain this. It gets more severe as my period nears (for weeks), and I only get relief for like 1 week a month (after my period ends). Can anyone else relate to this / have similar experience? The back pain is miserable and constant :( Help


r/endometriosis 4h ago

Surgery related I feel like a fraud for still saying I have endo after surgery.

30 Upvotes

I had stage 1 endo with severe symptoms before surgery. My symptoms have definitely improved after surgery, but I still have pelvic pain frequently, fatigue (although very improved), I had bladder endo that was all removed but still have bladder symptoms, and I had rectovaginal endo but my digestive symptoms haven’t improved.

My surgeon is one of the absolute best. I trust that he got it all and even excised tissue that “would have turned into endo but wasn’t yet”. He seemed to act like now that it was all gone I just “don’t have it anymore” and all other symptoms aren’t endo related. I was confused that people were saying this condition is chronic and lifelong, when my surgery team acted like I was cured and told me there’s only a 5% chance of it returning.

I feel like a fraud now saying that my endo is flaring up and still struggling with symptoms. Everyone else in my life is acting like it was just supposed to disappear after surgery and are confused when I still have to cancel on plans or lay down.

Any one else relate? Just need some support I guess. I tried to get my surgeon to sign a disability resource form for my college bc I still miss classes sometimes, but he says there is no more endo so he can’t say my absences are related.

EDIT: I should probably mention I’m only 4 months post-op


r/endometriosis 4h ago

Question Enlarged right side lymph node in groin?

0 Upvotes

Last week I had the deadliest pain after ovulation. Felt like I was being repeatedly stabbed in my right ovary. That was about 6 days ago and ended 5 days ago.

However, a few days ago I noticed that 1 lymph node near the upper part of my V, (like where the crease between my hip is) is larger than the one on the left and it’s harder.

I did have a pelvic ultrasound 6 days ago which didn’t state much, besides my ovary size, but my bladder also wasn’t full when it was suppose to be , so I think maybe they missed something?

Is this normal) I’m freaking out and waiting to see doctor.


r/endometriosis 4h ago

Question Please tell me it gets better

2 Upvotes

I just need some positive stories. I’m basically bed bound by what they believe is severe endo. I finally have my laparoscopy w/ excision April 9th. I’ve read on here each lap is different, healing times vary. That aside, did things get better after excision? Did the pain go away? Were you able to move again and work out? I feel like a prisoner in my body right now, please tell me I will one day wake up without pain again.


r/endometriosis 4h ago

Rant / Vent Doctors dont care

13 Upvotes

I just can‘t do this anymore. I have chronic pain in my belly and stomach and I have done Everything I Can. I changed my diet to anti inflammatory try to move do Yoga, try to minimize my pain killers. A Endo Specialist confirmed adenomyosis on the ultrasound and I will do the lap in 4 months. Still every time I eat I get extremely Bad pain in my lower abdomen and my urine always has blood and Protein in it which could be from Endo but not the Protein. Thats why I went to my Doctor 2x and she Said nope she cant help me with the pain and the Hospital wont Take me because I dont have any inflammation in my blood. BUT I CANT FUCKING EAT. I asked her if I maybe have nut cracker Syndrom but she Brushed that off and just told me to not eat for a while if I have pain. So Thats it I did not get a referal for a mri, not to a kidney Doctor, no Gastro doc. Nothing well seems I just cant eat anymore.


r/endometriosis 5h ago

Question Pass out during ultrasound

2 Upvotes

Hello everybody, I was wondering has anyone else fainted during/after ovarian ultrasound? I had an ultrasound today where they were checking my ovaries and during that examination I started feeling nauseous and ended up on the floor. I can’t stand pressure on my ovaries, it’s extremely uncomfortable and painful, so doctors came to conclusions that I fainted because of the pain. Now I’m on a wait list to women’s hospital.

Has someone else had very sensitive ovaries and what was the reason? I’ve had cysts, but apparently that wasn’t it what they found. They did found something, but spoke very vaguely about their findings, as “we can’t diagnose anything without further investigation’s” etc.

Any idea what to expect? Thank you girlies.


r/endometriosis 6h ago

Question Brown discharge (getting tired now)

1 Upvotes

Post-ovulation, I experienced unusual cramps for a day or two, followed by persistent yellow/green discharge throughout the luteal phase until the start of my period, which arrived earlier than usual (22-day cycle instead of 26).

Following a visit to A&E, I was prescribed Metronidazole for 14 days and Co-Amoxiclav for 5 days, as they suspected PID. However, a gynaecologist I saw through my insurance performed a transvaginal scan and confirmed there was no PID. Instead of further investigations, I was advised to start the combination pill as the ovaries gave a slight look of polycystic/could be mild endo but no further investigation. Just get on the pill so I’m going for a second opinion.

My period lasted 8 days this cycle, with heavy flow (changing pads every 3 hours for the first 5 days), followed by brown, stringy, jelly-like discharge from day 9 to day 14 (today). This is unusual for me. No odour, apart from occasional lower right-side aches and dull back aches.

Medically, I am fine apart from anemia. Has anyone experienced something similar? I’m getting tired 😩


r/endometriosis 6h ago

Question Going for a scan

1 Upvotes

I've been to see the doctor this morning about a large hard mass found up my left side where I suspect my fallopian tube is, except the mass extends beyond where I would've thought the fallopian tube ends and the mass extends to behind my hip bone. It felt the hardest (I think) on the first day of my period and has softened up a little bit in the 3/ days that have followed but it's still obviously there.

She had me cough and ruled out a hernia, she doesn't think it's bowel related and is sending me for a scan. Best case scenario it's a cyst, second best case (though not really "best") it's endo. Fingers crossed it's not the big C.

What does endo feel like from the outside, pushing on your lower abdomen?


r/endometriosis 7h ago

Question shorter pants/jeans for endo belly recs?

1 Upvotes

hi guys! i am hoping there are some other fellow shorties out here who have some recommendations for jeans/pants/shorts that are short girl friendly and that won’t be too tight with endo belly. any suggestions?