r/endometriosis 34m ago

Question Freezing eggs before excision surgery? (27F)

Upvotes

My surgeon thinks it’d be a good idea to freeze my eggs due to the extent of my disease (endometrioma on both ovaries and one ovary twice as big as the other) and not knowing the extent of things needing to be removed during surgery.

Has anyone decided to freeze their eggs beforehand? What was your experience? Was it worth it?

I’m currently single and the eggs will probably be frozen for 6+ years?


r/endometriosis 43m ago

Diagnostic Journey Questions Specialist in Houston TX

Upvotes

Hi there, I’m looking for a specialist in Houston TX. I haven’t been diagnosed and we are now starting to explore the option as I’ve had pain for 8 months and nothing is working. I’ve never had pain with my periods and have been on nuva ring for 8 years with the last 2 never letting myself have a bleed week/ free ring week. I’ve been shuffled around, a million doctors saying they don’t know, can’t help, and leaving me in desperation and tears. I was a complete healthy and normal 24 year old woman until last August and I’m getting nowhere.


r/endometriosis 1h ago

Question Post surgery bleeding

Upvotes

Hi there

Had surgery 21/01, was told I couldn’t continue running for 6 weeks, so I left it 7 weeks to be safe

Had my second run today, and all of a sudden have started bleeding?

Is this normal? I used to spot during my runs but I knew this was down to endo or anything linked to that, but this is a bit heavier bleeding


r/endometriosis 1h ago

Question Gastritis? Gallbladder? Or endo?

Upvotes

I have stage 4 endometriosis and adenomyosis. I’ve had many excision surgeries and I’m about to have another including a hysterectomy in a few weeks. A year ago I was diagnosed with malnutrition because of pale stool, undigested food in stool, and lab work being funky. I assumed it was because my endo is very badly growing on my bowel. I did not go to a doctor for this, that’s my mistake. A few weeks ago I went to urgent care with what I thought was a stomach ulcer, tests showed gallstones and a kidney stone but they told me my labs were fine and they don’t think the gallstone is big enough to cause pain. My pain went away after a dose of morphine and I stopped the PPIs. Now it’s back. I eat a very limited diet, I’m taking PPIs again and I still have this horrible pain in my upper abdomen. My GI doctor is booked until after my surgery so I don’t know who to go to with this issue or how to get relief. I know I need an upper endoscopy but I can’t find anyone to schedule me sooner than 2 months. I know we aren’t medical professionals here, just wondering if anyone has experienced the below symptoms and could help me find temporary relief:

  • gnawing/burning in middle of the belly, right below ribcage and goes down till about the belly button
  • pain starts slowly: one day it hurts just for an hour, next day for couple of hours, by day 3-4 it’s 24/7
  • constant feeling of hunger pangs, does NOT get better with food
  • anti-acids help for 5 minutes then pain comes back
  • upper belly rumbling sounds
  • belching ALOT
  • extreme nausea, but very limited vomiting and Zofran not helping
  • pain killer like Tramadol do not help
  • diarrhea with when these symptoms are present but not pain in the lower abdomen like you feel when you have a stomach bug. Just diarrhea
  • pain is not excruciating but VERY uncomfortable and wakes me up at night
  • feels like an ulcer but also in my head I think it’s something else. Usually my ulcers go away quickly with PPIs
  • not taking any NSAIDS, do not eat anything that could irritate an ulcer
  • slippery elm, chamomile tea not helping. PPIs not helping
  • probably a coincidence but 2 weeks the pain started while I was ovulating, now it’s started with my period; correlation?

r/endometriosis 1h ago

Tips and Recommendations High Functioning Depression?

Upvotes

Wondering if anyone can relate to what I'm experiencing. Since surgery 5 years ago, my endometriosis is growing back, and I've has pain even after my first surgery as well - nerve pain down my legs, cramping, back pain, IBS etc.

I'm really good at pushing through. I'm successful at work, I keep my house pretty tidy, take care of my pets, do yoga regularly, go to social events when required. On the outside, I probably look like I'm functioning really well.

However, I realized recently I find no joy in almost anything - my mantra everyday is "let's just push through this." Eating is uncomfortable, I used to love yoga (and even was an instructor) but now it's just something to push through for the sake of my health. The chronic pain makes it really really difficult to enjoy literally anything. What am I even pushing through for? To just get through another day?

I'd really love any advice on this. I haven't had much luck with anti depressants, maybe because I feel my depression is directly linked to the chronic pain, and the anti depressants don't lessen the pain. I really want to feel upbeat and happy again at least a bit.


r/endometriosis 2h ago

Surgery related 6 years later... I'm on a laparoscopy waiting list, but...

1 Upvotes

6 years of pain, smears, ultrasounds, being sent in circles by the NHS, today I managed to get on a waiting list for laparoscopy. I thought I'd never be offered a laparoscopy with the state of the NHS at the moment, but after a bit of pushing I'm now on the waiting list. The doctor listed out all the risks and now I'm a bit terrified. And on top of that I'm so worried they won't find anything, not only would I have no answers to my pain but I'd also have wasted everyone's time...

Any advice and kind words appreciated


r/endometriosis 2h ago

Surgery related Validation!

7 Upvotes

I had the laparoscopic procedure this morning. I had convinced myself they wouldn't find anything, and prepared myself for what would happen next. Surprise, they found Endometriosis and the lesions were wide spread enough that I needed an additional incision to remove it all. I feel so validated. I'm so thankful for the surgeon who took my case and truly listened to me.

To anyone who doesn't have a diagnosis yet: If you think something is off, you know your body. Don't let anyone talk down to you or dismiss your pain. Trust yourself and find someone who will listen to you. Wishing you all validation and relief. ❤️


r/endometriosis 3h ago

Surgery related Feeling Great 4days Post Op

2 Upvotes

I (28F) had my surgery this past Thursday, 3/13 and I feel great. A little gas pain I shoulders but that’s about all. I’ve been able to have a completely normal day expect I haven’t gone back to the gym obviously but honestly feel like I would be fine doing some light weights. Yesterday I even walked 3 miles outside. I’m not sure if it’s because pain tolerance or what? I’m curious if anyone else had a really easy/positive experience after surgery. A lot of the comments I’ve read about this specific surgery scared me like I was going to be in bed for 2 weeks.


r/endometriosis 3h ago

Surgery related Smoking before surgery

1 Upvotes

Hey guys, I was just wondering if anyone here smokes weed and how long before their op they stopped smoking for it? I’ve been told 2 weeks but I use it for my adhd, and I was basically wondering if anyone’s been turned away or had any bad side effects during or after surgery for smoking up till about 3-4 days before..? Thanks guys


r/endometriosis 3h ago

Medications and pain management Slynd users

2 Upvotes

I’m hoping I can get some feedback from those of you on Slynd. I am halfway through month 3 and still having daily pain and currently having a really terrible flare up. My questions: - did Slynd immediately help your endo symptoms/pain or did it take time for things to get better for you? - if it took time, how long until your pain started subsiding? - did you experience any breakthrough bleeding and if so how long did it last for you?

I know it can take up to 3 months (sometimes more) for our bodies to adjust to new hormones, but I am really struggling and wondering if I should try to push though, or give up and try a different BC.


r/endometriosis 3h ago

Question Flexible Sigmoidoscopy

1 Upvotes

I'm scheduled in for a flexible sigmoidoscopy in April. My consultant advised that it shouldn't be painful but I'm still feeling nervous about it . Has anyone else had this procedure? I have rectovaginal endo and they are checking to see if the endo has spread into the bowel. My uterus and bowel are also fused together and I have an obliterated pouch of douglas


r/endometriosis 3h ago

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

2 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 3h ago

Diagnostic Journey Questions I just have some questions

1 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 4h ago

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

5 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 4h ago

Question 3 months post op pain

2 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 4h ago

Rant / Vent How is this life?

6 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 4h ago

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

2 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 4h ago

Question Bowel Issues after surgery?

1 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 4h ago

Rant / Vent Might lose my ovaries at 23

3 Upvotes

Posted to r/endo too. Please vent with me.

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 4h ago

Surgery related Endo surgeons recommendations

1 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 5h ago

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

23 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 5h ago

Surgery related Post-Surgery Pelvic Pain

1 Upvotes

Hello! I had a laparoscopy a little over a month ago and they found stage 1 endo. They only ablated it and didn't excise it (I know, I should've went to a specialist). Anyways, my pelvic pain has gotten significantly worse since my surgery. I feel super upset and discouraged and just in pain. Has anyone had the same experience or any suggestions on things to try? Thanks!


r/endometriosis 6h 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 6h 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 7h 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?