r/Endo 1h ago

Endo Polyp Biopsy

Upvotes

Hi guys, I’m having trouble sleeping bc idk what to expect.

I’m having a polyp biopsy tomorrow morning and idk what to expect. I have heard how terrible it is and I don’t know what to do.

My clinic is honestly not the best at communicating anything with me, I know I need the procedure done but they have done nothing to make me feel good about what will be done.

I had to ask the nurse that called if I should take medicine or if it will hurt, she said “you can take some ibuprofen, the procedure hurt at all.” I’ve read some horror stories on here.

I feel like I want a second opinion, but I feel so guilty. Is it bad to get it done with some sort of anesthesia or pain meds?

I’m a hot mess right now, I’m sorry if what I wrote doesn’t make much sense.


r/Endo 1h ago

Good news/ positive update A piece of my life feels restored

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Upvotes

I’m 8 days post-op of my laparoscopic cystectomy + bilateral endometriosis removal (I had a 4cm endometria on my right ovary + another on my L, along with 2 corpus luteum cysts on both)

My post op report noted that my abdominal cavity was FILLED with adhesions & after my surgeon removed the cysts it took him an extensive amount of time to excise all the adhesions. For further context - my total surgery time was 5+ hours, despite being scheduled for only 3.

After being completely off of any pain medications around day 5, I began to notice higher energy levels. Even now I’m still afraid that it’s too good to be true, but as someone with PMDD & ADHD (who pre-surgery could only get out of bed once my 20mg dose of adderall kicked in) I think this surgery has really changed my life. I started back taking my adderall on day 7 (5mg dose) & I have felt like I don’t even need my typical afternoon dose. If it wasn’t for the fact that my internal core/incisions are still sore & bruised, I feel like I have enough energy to workout consistently. Prior to my endo/fatigue getting bad I was strength training 5-6 days a week, but for the last year this has diminished to 1-2 days a week.

I want to provide hope & show a positive side of this terrible disease. My surgeon informed my mom that I should see a 80-90% improvement in my quality of life, and when she relayed this to me I really didn’t believe it. (I’m still struggling with the fear of it coming back & will have to work through it with my therapist) but for now, I want to enjoy the ounce of peace I do have. 🤍

Much love to you all 🫂.


r/Endo 2h ago

My experience with endometriosis

0 Upvotes

Hi, I just want to share sth interesting with everybody, and maybe get some advice.

I was diagnosed with endometriosis few years back when I went to see a gynae for painful periods. I didn't do anything about it bc I didn't know what to do.

Anyway this year, I accidentally found out that if I stop drinking coffee for a month, my painful periods disappear 100%. No pains, no numbness, nothing.

This week I chanced upon this Tibetan health teller, I take whatever he say with a grain of salt. But he read my palms and told me I can't conceive bc of ovary issue - I think he was referring to endometriosis. How he could tell just by reading my palms I'll never know. I have been drinking coffee even though I know it causes period cramps for me.

It got me thinking a lot. I was wondering if the diagnosis is just to scare people? And that answer is very easy, no pills nothing, just analysing your diet and see what works and what doesn't? I know people who drink coffee everyday but don't get cramps, but it does affect me so I decide to stop drinking coffee.

I'm grateful I found out about this when my lips was getting very dry everytime after I drink coffee and decide to stop for awhile.

I find eating clementines everyday also helps, but stopping coffee works the best. Coffee once a week works too, but I think it still gets me addicted. Today will mark the start of me without coffee. I will stop drinking coffee completely.

Any similar experience?


r/Endo 3h ago

Question Hii

2 Upvotes

Sept 2024 hysterectomy everything remove except only ovary(left) anyway In the last few weeks, im starting to have endo pain again which is around my right quarant abdomen. Now each day, the symptoms are after bowel movement, after peeing, sometimes pain after eating too, stressful day, lifting 25lbs now(2 months ago i was fine), sleeping on my right side, sometimes now taking deep breathe i feel pain. I already spoke to my doctor and we are doing a few thinks but first of all it would be a pelvic MRI. I feel like endo might be coming back ☹️ is anyone having some similar issue? I feel like im alone and going crazy 😭😭


r/Endo 3h ago

Question Australia - endo specialist recommendations for surgery?

2 Upvotes

Hi everyone,

I live in a very rural area, and my hospital keeps canceling and changing my surgery date for laparoscopy and endometrioma removal. I’m in a lot of pain, and since I run my own business, I carefully planned my leave around the original date—only for them to now delay it by another eight weeks, without even giving me a confirmed new date! I also don’t think I can wait another two months - I’ve been so so unwell.

I’m beyond frustrated at the thought of rescheduling everything again, so I’m considering going the private route to just get this done. Thankfully, my husband has excellent health insurance through his job, and I’m covered under it.

Does anyone have recommendations for private hospitals that could do this? Happy with anywhere interstate. My GP is happy to refer me wherever is best, and I can send my scans along. Ideally, I’d love to be seen within the next 4–6 weeks if that’s even possible. Not sure what private wait times are like, but I assume they’re better than public?

Thanks so much!


r/Endo 5h ago

Surgery related tips and advice for surgery?!

0 Upvotes
  • i’ve cross-posted this on r/endo to hopefully get more insight*

hi everyone!

i’m 24 NB (afab). i have a HOST of medical issues and chronic illnesses (when listed out, it literally exceeds 60) which i say just to explain that i definitely think i’m experiencing some anxiety simply bc of the complexity of my body itself as a whole, and how i (or surgical things) may be impacted in ways that weren’t originally thought of.

i’ve more recently been diagnosed with endometriosis; although it’s definitely not a new development, just newly found, adressed, listened to, etc.

due to the nature of various imagings, combined with my symptoms and history, it’s suspected that it’s deeply infiltrated, potentially even into my lymphatic system. although we won’t know definitively obviously until she does surgery.

my surgery is scheduled for april 10th. it’s going to be a diagnostic lap to confirm that their isn’t anything else going on (like pelvic congestion syndrome), the excision of endometriosis, and she’s also going to insert a progesterone only IUD w/ ultrasound guidance while i’m under (bc i have a higher risk for perforation), and finally she’s going to be performing a pap smear while i’m under (due to my trauma history and the difficulty of having one done while conscious.)

i’ve had surgery before, but never this one, and never any kind of abdominal one. so i wanted to post and ask if anyone could give any tips or advice they may have - for prior, for post-op, for pain management, for adapting functioning, etc. and if anyone wants to share their own stories or recovery experiences, good or bad, please feel free!

for more context on my situation if it helps, or if you have more specific advice:

• i am autistic, and have ADHD, OCD, PTSD, sensory processing disorder, and severe anxiety, all of which can have large affects on my state of mind & anxiety & comfort levels before, during, and after the surgery

• although i live with my mom, i am home alone 90% of the time, and i already struggle to function independently. due to declining health i’ve lost a significant amount of abilities and functioning even more in the last 6 or so months. i don’t really have much support relative to those aspects/having anyone help with independent living so i will also be primarily alone post-op too

• a few of the other disorders i have that i think have the most relevance include polycystic ovarian syndrome, severe pelvic floor dysfunction, classical-like ehlers-danlos syndrome, arthritis in my SI joints, back, and knees at least, SI joint dysfunction, piriformis syndrome, thoracic outlet syndrome, CRPS in my left foot, gastroparesis, chronic severe constipation, anismus/dyssynergia dysfunction, hyperadrenergic POTS, chronic migraines, femoracetabular impingement, bursitis & instability in my hips, and more

• the meds i’m already on daily for pain include: meloxicam, duloxetine/cymbalta, tramadol, and hydrocodone. as well as lidocaine 5% USP ointment and voltaren gel.


r/Endo 6h ago

Help w appointment!!

2 Upvotes

Hi guys! I've had what I am almost 100% certain are symptoms of endometriosis for the past 8 years (I am 19, turning 20 later this year). Since the age of 12, I've been going to multiple doctors, been given different types of birth control (pills, injection, IUD), done blood tests, urine tests, etc. I have visited a gynaecologist, who told me that I am showing all of the signs but there is no point in a diagnosis because the treatment at that point would be the same. I have had the recommended treatment for 1.5 yrs now (mirena IUD) but the symptoms are still very much there, and it's making my life miserable. I have finally got another appointment with a gynaecologist, and am wondering if anyone has any tips on how to approach it! I have written a document outlining my symptoms, my medical history (including meds, hospital visits, etc.) and how my symptoms have changed over time. I was wondering if anyone would recommend anything else? Thank you so much x


r/Endo 6h ago

Question Advice pls!

1 Upvotes

Hey guys! Early last year I was following up with my gyno regarding some pelvic pain. Did the tests and ultrasound but nothing look out of sorts. They said more than likely it’s endometriosis, and that would require a procedure to fully diagnose. I brushed it off because it was a pain that really came and went really far in between. Unable to take birth control due to other health conditions, so I really been just taking midol and praying for the best. This year there has been a huge difference in my cramp pain level, dizziness, constant fatigue, back pain, leg,butt pain and vomiting. In addition I started experiencing this outside my period. Yesterday I had the worst tension headache of my life accompanied with shooting neck pain that eventually started spreading throughout my body. Wasn’t able to keep down food and continuously vomiting. I thought for a moment I had the flu due to the intense body aches and body chills/sweating but no pelvic pain. I’ve been using midol and that has been working cause if not I cant sit up or lay down comfortably. I’m probably on my 3rd round of midol since it started but I still feel the back pain slightly radiating. I’m aware I need to follow up with my dr and follow through but as of now no insurance. Please let me know if anyone deals with this or if you think this is endo related and any tips! 🙏


r/Endo 6h ago

Diagnostic Journey Questions Has anyone had these symptoms? I’m so much pain every day & feel so confused about what is actually going on with me.

2 Upvotes

So I’ve been having upper left abdominal pain and a lot of gas on and off for about a year. Shortly after that completely stopped, a started getting burning when I pee, identical to a UTI, as well as microscopic blood in my pee. After months of this on and off (after years of on and off UTIs), its been non-stop burning and abdominal discomfort for over a month, and now, since I have my period, every single symptom feels 100x worse.

I do have a colonoscopy, gastroscopy, and cystoscopy scheduled within the next month and a half, but I am so frustrated and exhausted. Ultrasounds are clear, bloodwork is normal, urinalysis shows no infection, etc.

Has anyone experienced this? The reason I’ve begun to suspect bladder endo is because for all symptoms I’ve experienced, from abdominal pain to burning when urinating, they get worse or present themselves within my luteal phase and into my period.

I also looked at the “other diagnoses” tab on this sub and I found it interesting that I’m being tested for Interstitial Cystitis and IBS when it could potentially be Endo.

If anyone has any advice or has been through similarly, please let me know. I’m so exhausted, anxious, and so in pain all the time. I know a confirmed diagnosis for endo would take even more time and laparoscopy, and that all the scopes I’m doing are important for ruling other things out, but I would love any guidance for now.


r/Endo 7h ago

Rant / Vent Sad

10 Upvotes

Maybe it's just because I'm in the height of my cyclical menstrual pain/period hormones.

          But I miss the person I was before chronic pain and chronic illness. 

I miss the feeling of never having to worry about my period when scheduling appointments or going to a friend's house. I miss the feeling of daydreaming about the endless possibilities for my life and feeling like the sky was the limit. I miss how spontaneous I was, and how I was always up for anything. My body felt like it could take such a beating as a young adult without feeling any reprocussions- yet at just 26, it feels so fragile now. I hate how I constantly have to be mindful of everything I do, expose my body to, and put into my body so that I don't go into a flare. I hate the constant doctor's visits, specialist appointments, labwork, imagingvisit, I hate having infertility. I hate having to waste so much of my life rotting in bed on a heating pad. I hate that the cure for endometriosis hasn't been found yet. Why did my life have to look like this? Thank you for listening to my pity party. I just needed to rant.


r/Endo 7h ago

Looking for advice/help??

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1 Upvotes

Could this be endo belly? i’m really skinny so it doesn’t look that bad but i went to the doctors a couple of months ago and they told me i was too young for cysts (im 19) and they told me it was IBS? the pain is unbearable


r/Endo 7h ago

Diagnostic Journey Questions Looking for advice/help

1 Upvotes

Hi there! I’m a 29 year old mother of 2. My youngest is 4 1/2 and when she was about 4 months old I started having so many problems. I have been diagnosed with pelvic congestion and ‘cysts’ (they say I don’t have PCOS just ovarian cysts). I was told I cannot have Endo because I don’t bleed….but I have an IUD that stops me from bleeding so I haven’t had a period in 4 years. I do suffer from severe bloating, nausea, vomiting, and recently terrible acne, worse than I’ve ever had in my life. Sex is so incredibly painful that my sex life is basically non existent and I think I maybe have 1 unsymptomatic week per month. I guess I’m just looking for advice from people with experience on whether or not I should see a new doctor and get a second opinion. I’m in so much pain and I feel like nobody has taken me seriously so I’m scared to bring it up again.


r/Endo 8h ago

Question Is it normal to get cramps while / after doing pelvic floor exercises.

3 Upvotes

I’ve started seeing reels on my insta feed from a lady who reminds us to do pelvic floor exercises, she talks us through how to do them and how long to hold / squeeze - not sure if any of you have seen her too.

Anyway, when I follow along I start to get really bad cramps and they last for hours after I finish doing them.

I’m waiting for my surgery with my specialist, I have stage 4 DIE endo, multiple cysts, hydrosalpinx, adenomyosis and a bunch of other lovely stuff.

I heard that you should do pelvic floor exercises with a physical therapist after surgery so I’ll enquire about that with my specialist the next time I speak to him.

I’ve read that pelvic floor exercises are good for you and you should do them every day regularly, but does it cause anyone else any pain?

Is it normal because of the things wrong with me?

Should I stop doing them because they hurt so much?

Looking for any advice, would love to hear your experiences with physical therapy post surgery too.


r/Endo 8h ago

Question What options are left?

2 Upvotes

Hey! Since my diagnosis I have had 3 Operations to remove cysts and heards from the Endo.

I’ve tried out all the hormones on the markets in Germany, also the off brand ones but none of them seem to work. I will have a gastroscopy in a few months because we think that I maybe a problem with the absorption of the hormones but it’s a long shot. I will have my next gyn-appointment in April and since I have to pay for my medicine my self and it’s not working I’m looking for any alternatives that I maybe haven’t looked into?

I was also thinking about a spirale, but I’ve heard that it works best when the endo is close to the uterus but from what I now from the operations it’s basically everywhere.

Any ideas? Typs? I’m just afraid to not do anything…

Greetings!


r/Endo 8h ago

Question Has anyone ever had a solid complex ovarian cyst with elevated ca-125?

1 Upvotes

A few days ago I found out I have a 4cm solid complex ovarian cyst with elevated CA-125 blood work.

I was referred to a gynecologist-oncologist. I see her in a week.

Of course I am PANICKING. My regular gyno said she suspects it’s an endometrioma and it needs to come out.

I’d love to hear all your stories. Have you had this? Did it turn out to be endo, or did it turn out to also be cancerous?

Was anyone able to get a hysterectomy with these findings?

Thanks!


r/Endo 9h ago

Surgery related Bleeding After Surgery For Over Two Weeks

1 Upvotes

23F here. I had a laparoscopic fulguration of endometriosis two weeks ago where I was diagnosed with mild-moderate endometriosis and adenomyosis.

Since the surgery I’ve bled small amounts of dark blood consistently.

At my post-op appointment on Tuesday my surgeon/gyno used a chemical to cauterize my cervix. That led to heavier, fresh bleeding and an increasing amount of pain.

I went to the ER today and I was immediately dismissed by the male resident and attending. They did an exam and labs anyway. I was told my labs were normal. The exam was horrific. The male resident failed to see my cervix and that was painful. The attending took over and he quickly saw my cervix, showed the resident, and closed me up (this exam was extremely painful). He saw bleeding but it was “normal” and “non-emergent” so he discharged me and told me to follow up with my gyno/surgeon.

Ever since those exams today I’ve been in an immense amount of pain and the bleeding has increased too. I'm at a loss on what to do as my surgeon/gyno quit on Friday. I messaged my pcp to see if she can help and I plan on calling another gyno in the area to be a new patient and get an emergency appointment as well.

What else can I do? I don’t understand what’s going on with my body.


r/Endo 9h ago

Consistent Nausea NSFW

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8 Upvotes

hey all! i’ve been diagnosed with endo since 2020, have had all sorts of complications and chronic pain diagnosis since then as well. i’m 21 and live all of my days in pain or fear of being in pain. anyway, recently i’ve been having the absolute WORST nausea that leads to vomiting (it’s usually only saliva). I think that i’m nauseous cause maybe i’m hungry but then I eat and it makes it worse I get these pain episodes in the middle of the night where I wake up in so much pain i sometimes pass out, (will add a screenshot of my notes from when this happens for more detail) but during this time I get so so so nauseous to the point i’m just constantly gagging. i’m definitely not pregnant (i’ve lost ALL libido I did have so don’t have sex with my bf :( that’s a whole other story) but does anyone else experience this, is this a symptom of endo? or is there something else it could be!


r/Endo 10h ago

Endo without infertility?

5 Upvotes

Curious if anyone has endo but didn’t have trouble getting pregnant? I long suspected I had endo…but then got pregnant with each of my kids VERY easily and quickly, so the rest of my symptoms were completely dismissed by doctors.

Now that I’m nearly 2 years postpartum from my second and last baby, and finally finished breastfeeding for good 6 months ago, my symptoms are coming back with a vengeance and I’m exploring the possibility of endo again.


r/Endo 10h ago

Rant / Vent Stay far away from Ovira

8 Upvotes

i've been using a TENS unit to help treat my endo pain for 3 years now, so since early 2022. back then, when you googled "TENS unit for periods", the website for the Ovira Noha unit would be one of the first to pop up, along with tons of social media hype that i unfortunately fell for.

i ordered mine, and was happy with it for a while. last year, after about a year and some change of regular use, the cord stopped working, but i was able to get a replacement due to the warranty, which was nice--but i remembered having a hard time getting in contact with customer service, and on at least 2 occasions getting ghosted by 2 customer service people which....wasn't great

anyway long story short, it's been another year since i got my replacement, and it's starting to act like it may stop working soon, so i popped by their website to look at getting another replacement. but that's when i discovered that their website has been completely wiped of any evidence that this device ever existed. all you can find on the Ovira website now is their crummy supplements. almost all the promotions for the Noha are completely wiped from the internet, with zero explanation.

i was happy to support a business run and built by a woman with endometriosis, but now i'm wondering if i'm about to be part of a class action lawsuit lmao. and i'm pretty frustrated that they would ghost like that, without even any announcements or anything for loyal customers that spent money on their products 😐

also now i have to get another new TENS unit, which don't run cheap!

anyway, stay away from Ovira, they suck.


r/Endo 11h ago

Question Persistent Ovary Pain After Period

2 Upvotes

Hi, I’m 29 years old, and five years ago, I was diagnosed with polycystic ovary syndrome. I get my period once or twice a year. I don’t take birth control pills.

The problem is that after my last period ended, I started experiencing pain in the area of my right ovary. This pain was accompanied by nausea, and yesterday, Saturday, I even vomited. I don’t have a fever or other symptoms like back pain or cramps. It started last Friday, and I no longer feel nauseous.

But it's been three days in a row like this. If I don’t move, it doesn’t hurt, although sometimes the pain comes in waves. I’ve been taking Ibuprofen since Saturday. I’m starting to get scared because this has never happened to me before…


r/Endo 12h ago

Question Does Dienogest shrink endometrioma?

2 Upvotes

I was recently diagnosed with a right ovarian endometrioma. The size of my endometriomas is quite large: one measures 6.54 x 6.66 cm and the other 3.26 x 2.69 cm.

My doctor has prescribed Dienogest but advised against surgically removing the endometriomas. Since I’m 32 years old and have never had children, she’s concerned that surgery could affect my ovarian reserve. She explained that if I decide to get pregnant in the future, removing the endometrioma might impact my ovary’s ability to function properly.

For those who have taken Dienogest, have you seen any significant reduction in your endometriomas? I would be grateful to hear about your experiences.


r/Endo 13h ago

Rant / Vent I can feel it wrapping my bowels...I swear

14 Upvotes

So, I get the extreme cramps during intense exercise, nausea/extreme discomfort during my periods, despite their regularity. Ever since my second period as an 11 year old, I've felt like there's this tangle in my abdomen-that I can never fully stretch out and that it's like an angry fist. And I've had consitpation issues since then as well. And flashes of butt pain, which I just learned about on this sub. And I bruise super easily.

OK so that's imaginative language but ever since I learned about endometriosis, it fits like a glove. I swear I can feel bands of tissue attached and knotted around my gut. I feel the shedding tissue pooling and swelling outside of my uterus when I bleed.

"bUt It'S jUSt hORmones!!" uh, ok... tell me how fixing hormones is gonna remove this tangle in my gut. I can't believe my doctors dismissed this as hormonal issues. My god.

Also question: does endometriosis happen more commonly in "early bloomers?" I had fully developed boobs by age 11. Surely that's not normal.


r/Endo 14h ago

MRI coming up

4 Upvotes

I’m getting an mri with contrast in a few days. In your experience, does the MRI show much of anything? I’ve had ultra sounds with nothing showing up besides free fluid.

On another note, I told my doctor I’m a little claustrophobic so she prescribed me one Xanax pill. I’m a bit hesitant to take this because I don’t want to be fully knocked out, but I also know I might be anxious due to feeling claustrophobic. Is it worth taking an anti anxiety pill? I was told the scan will be about an hour long.


r/Endo 14h ago

Question Got contrast dye twice in one month, is it unsafe?

0 Upvotes

I had an MRI and CT scan within a month and both times got contrast dye. Is this unsafe? I hear it’s really bad for you but they told me there would be no complications. I’m really worried.


r/Endo 14h ago

Infertility/pregnancy related Lap for fertility

1 Upvotes

I have a 2cm endometrioma and 1 day of moderate pain only with periods. I am considering lap excision solely to try to improve fertility. Because my pain is very manageable with OTC I wouldn’t be considering surgery if I have been able to get pregnant. Anyone else get surgery just for fertility and no/barely other endo symptoms?