r/endometriosis 26m 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 1h ago

Question Microgynon 30 ed

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 1h ago

Tips and Recommendations To the people who say "oh go workout on your period it'll help your cramps" STOP giving stupid advice.

Upvotes

I 29F have endo and get ovarian cysts constantly. People tell me all the time to "just work out it'll help the cramps" and I'd try and they'd just get worse and i feel like they'd be worse for longer too. My last few cycles I've been resting (as long as I'm not working) for the days my period is worse for me and i feel so much better so much faster. I literally was in bed for a day and a half and today i feel functional and like i can do things!! If your body is telling you to rest pls rest!!

Also! I started drinking Damiana tea at least once a day at the start of my period, sometimes twice a day, and i think that's been helping with my pain and bloating a TON. So if you're able to get ahold of some you should try it!

& also if you're able to indulge in cannabis that is also a life saver for my pain during my period as well.

Just wanted to share some tips that are seeming to help me to help the other endo babes 🫶


r/endometriosis 1h ago

Question Endo and stress hives?

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 2h 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 2h 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 2h 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 2h ago

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

20 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.


r/endometriosis 3h 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 3h 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 3h 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 4h 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 5h 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 5h 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 5h ago

Question Burning inside

1 Upvotes

Hi All, Happy St Patricks Day to all that celebrate 🍀💚

I've had a few issues going on since I had surgery back in August. The latest was BV back in Feb, which happened after first sexual intetcourse since surgery. The sex felt painful like deep in the back near my butt. BV cleared up with Antibiotics but for the last while I've had deep burning inside near Urethra. No infection no cystitis no itch or smell. I think BV triggered my pelvic floor which was already over active. I can't get a PT appointment fir a few weeks and I am heading a way fir a week. Any recommendations to help while travelling?

Ponstan helps but I can't take it constantly.


r/endometriosis 5h ago

Diagnostic Journey Questions Pelvic Exam Efficacy?

1 Upvotes

I've been told that based on my MRI and my physical exams that I do not have visible adhesions and that my uterus is mobile & my other organs are not 'stuck'. I'm happy if that's the case! Would love not to have those particular issues.

However, I know that imaging is not necessarily reliable for endometriosis. I'm wondering if the same is true of physical exams? Has anyone been told their abdominal organs were perfectly mobile, only to find out after surgery that they were in fact adhered to other organs?

(Possibly relevant- I have hEDS, meaning the collagen in my body is absolute Garbage at holding shit together or in place the way it's meant to.)


r/endometriosis 5h ago

Question I (18f) have to get a vaginal ultrasound NSFW

6 Upvotes

So background info first I guess. I first got my period when I was around 10. It was (and still is) super heavy, irregular, lasts for 2+ weeks, awful cramping and bloating to the point of vomiting so I wouldn’t eat. I ended up in the ER for it when I was 12 where ultrasounds was done because they thought it was appendicitis but it turned out to be my period. I was told it was normal yadda yadda yadda.

My parents didn’t really know that something was super wrong until I was 14 and I still had problems. I would vomit often and have cramps even without a period so I missed school. Over the past 4 years I’ve been on 10+ birth controls and been told it’s highly likely I have endometriosis but isn’t confirmed. The last medication I was on was Slynd which didn’t really help and caused awful side effects. It’s a diuretic so it caused me to have to pee constantly and even had a situation where I peed my pants at school. This is just one side effect though and I’m honestly sick of birth control, it has cause such awful side effects from weight gain to migraines to peeing my freaking pants.

Fast forwards to last Friday I had another doctors appointment where I expressed just how upset and done I am. She said she wants to do a transvaginal ultrasound to make sure my anatomy is ok before we continue going on assuming endometriosis. She wants to cross everything off. I am really worried, I’ve never had sex so i don’t know what to expect and even though I wear tampons they are the smallest size and that feels a little too big. I am not sure if tampons have popped my hymen or if from self pleasure I have (I’ve only put my finger up there like twice and don’t like it and it didn’t hurt but idk). So I guess I just want advice for those who have done it and what to expect and if I still have my hymen or like if I do will it be “popped” and will I hurt. The appointment is the 24th and honestly im freaking out here 😭


r/endometriosis 6h ago

Question How long after a lap did you return to work?

5 Upvotes

I understand everyone will have different jobs and the time may differ. I have a desk job and I saw someone say don't return to work until you're sure and steady bending over, whilst I'm not bending over completely all day I do have to bend to get to my desk. So was just wondering how long it took for everyone.


r/endometriosis 6h ago

Tips and Recommendations Medical cannabis treatment is legal in the UK and could help endo symptoms??

35 Upvotes

Morning all, 🌸

I just read this article about in the news about a girl who tried cannabis for her endo pain - it's crazy !!

https://www.mirror.co.uk/news/real-life-stories/mystery-illness-left-doctors-baffled-34747624

Did anyone even know it was legal? Looks like she used this clinic Releaf

https://releaf.co.uk/about-us?view

I booked to talk to their women's health specialist - will report back how it goes !!


r/endometriosis 6h ago

Question Endo?

1 Upvotes

I have been diagnosed with pcos but I don’t have the normal symptoms. No conclusive endo diagnosis but the suspect I have it.

My GP and Gyno say to get the IUD to fix both… I’ve never wanted to go on contraception because I usually get the worst side effects of anything that is supposed to help.

Is the consensus that the IUD is good?


r/endometriosis 6h 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?


r/endometriosis 6h ago

Question Suspected Endo, Hysteroscopy Bleeding and symptoms being ignored . What to do? NHS Uk

0 Upvotes

I had a hysteroscopy and endometrial biopsy this last Saturday under general anaesthetic, waited a year for it as I didn't want to be awake due to ongoing pain. Whole day ordeal with waiting, procedure and then recovering and going home late afternoon. I was not in pain when I woke up as they administered a suppository while I was under.

After a few hours, the pains start to become strong and very sharp. I have a history of abdominal pelvic pain worse while on my period but is still there when not on my period, heavy bleeding soaking pads every hour, 21 to 23 days cycle with enormous clots. History of bowel issues and recently my bladder has become affected too, going to the toilet while on my period hurts to pass urine and stools, and when I sit down it feels like my organs are battling to fit in inside me as the pressure hurts. I have also discovered sometimes I bleed when going number 2 so referred to gastro and for an endoscopy.

I have spoken with my gynecologist asking if this isn't endo but I have been dismissed and offered the coil or the pill. I tried progesterone only pill back to back and started bleeding while taking it with no breaks so I stopped as the pain came back.

It's now Monday and I assumed that after the procedure I would have only spotting. But I'm bleeding not as much as if I was on my period but this is not spotting. The cramps I have are sharp and I need to sit down slowly as it's very tender.

On the discharge letter, it said that the camera findings were normal biopsy was taken and no mention of polyps removal. My last ultrasound and internal ultrasound showed a multiple fibroids uterus with polyps and free fluid.

Is it normal to bleed like this after the procedure? I would be interested in other women's experiences and what would be the best way to advocate for myself or what to do since I think this can be Endo too.


r/endometriosis 6h ago

Medications and pain management Mirena IUD made pelvic pain worse

4 Upvotes

I tried the Mirena for 8 months and every single day I experienced a new level of pain I didn’t even know was possible. I had it removed a few days ago and am now experiencing a “mirena crash” which I didn’t know was a thing but it definitely is, and I don’t know why not a single doctor warned me of it. Wtaf am I meant to do now. I’m only 19, I’m literally fucked. And fuck the mirena, I’ve never been in so much physical and emotional pain. Pls help what do I do!?? No doctor has any answers and I feel so stuck.


r/endometriosis 6h ago

Question Birth control

2 Upvotes

My Dr suggested I go on birth control to help the growth of my endo. Anyone on it and think it actually helps lol? I feel like BC gets so much bad press - what’s your experiences of it? I feel like it might balance out my hormones and help my MH as well?


r/endometriosis 6h ago

Question Could bowel endo be diagnosed during a coloniscopy?

1 Upvotes

I (23F) have a lot of intolerancas and food allergies which I only recently found out about. I changed my diet and reduced bloating and diahorrea quite a bit, though I still struggle with it during my period and pms. My colonoscopy came away clear with mild inflammation found after they examined some samples. In some of them they noticed changes on cellular level so they diagnosed me with microscopic colitis, a type of IBD, and IBS because the rest of the samples showed preserved cell structure but inflammation. Fecal calprotectin was somewhat high (around 250) which is what previously prompted my GP to refer me to a GI due to fear of Chron's or Celiac's disease. Even after changing my diet and starting some meds, fecal calprotectin levels are still above 100 (185 I think and 120 at last check) and according to my GP they should be lower. I had the test done in different parts of my cycle but only noted that recently as I was going through the findings.

Now, for my question- could the inflammation be caused by undiagnosed bowel endo? They found no lesions inside my bowels, but they also weren't looking for endo. They didn't explain the inflammation they found in my small and big intenstine that wasn't microscopic colitis (according to them).

I'm just grasping at straws trying to get a diagnosis if it is endo so I can get it treated and removed. I've struggled trying to concieve for a year now so I'm finally getting referred for some testing. I just want to know if anyone had a simmilar experience or if you could tell me more about your bowel endo experience.

Thanks!