I posted awhile ago about my endo causing extreme fatigue and how I have my surgery scheduled for the 29th but this…. This takes the cake.

The last week and a half has been hell for me. Between crushing fatigue, and the flare ups. I’ve maybe made it to work twice. So today I finally said screw it and went to my family physician as a walk in because I cannot keep living like this.

Needless to say this man proceeded to write me a note and place me on medical leave until my surgery so my body has time to rest and recuperate before really needing to use its energy for recovery. Then after that goes on to start ordering multiple tests to figure out if it’s something else and prescribing me medication to ease the pain.

Not once did I have to fight for it. I literally just told him how I was feeling, my symptoms, how it’s effecting me. And he did the rest.

I could cry over how heard I felt. But for now, I’m about to have myself a very much needed nap.

I'm part of a local Facebook support group for people with endo. They do monthly get-togethers over zoom to talk about their journeys, gripes and other things related to endo.

I decided to join one night and share my story. I seem to be the only one in the support group that had negative interactions with one of the nook-vetted surgeons. When I was explaining how fucked up this surgeon was, and that he wasn't listening to me, the organizers(who also suffer from endo) hit me with "well, everyone has bad days" and continued to dismiss what I went through.

This man was in charge of my surgery. Not just some random passerby.

I have not been back since. But the whole experience put a real damper on the inclusiveness that this group claims to have. 😮‍💨

Hi all! I’m new here 👋

I had a meeting with an Endo Specialist (Dr. Gould if there’s any others here in PDX Oregon!) who came highly recommended. She ultimately said I qualify for the diagnosis surgery but i ended up canceling it last year. I’ve already had 3 abdominal surgeries (appendix, gallbladder and C-section) so I started doubting it- what if it wasn’t Endo kept creeping into my mind. I thank all of you for actually changing my mind and I’ve rescheduled! I realized even if it’s not, she’ll be able to see if there’s anything else in there causing the issues.

I also plan to meet with a GI specialist at some point, but might hold off until after surgery… I’ve had GI issues as long as I can remember but since having my son it’s gotten so much more excruciating.

I’m meeting the doc one more time before surgery and I just want to make sure I track my symptoms the next few months. It was hard to recall everything at the last meeting and I want to be super accurate.

Main question: did you or do you keep track of all symptoms? Any tips? I have severe ADHD so tracking is hard for me. I also wonder if I should include things like what I ate that day, what other meds I took, etc… I can’t take birth control because it really effs up my mental health which I take 3 meds for already. My cycles have been fairly regular but this last year somehow much worse.

Identifying where the pain and when it happens is the hardest part for me. It changes all the time and half the time I can’t tell if I’m possibly having a cyst rupture or something bowel related 😫

Sorry for the long post! Nice to be here with y’all. Nothing better than feeling united with people who have probably been gaslighted most of their life!!

“Cutting Out the Rot”. My first time quilting from scratch.

TW: blood

my excision surgery via di vinci was yesterday morning. today one of my excision sites is still bleeding. the others are all dry. nurse said to change bandage and if it’s bleeding in morning to come back in for possibly another stitch. sigh. has anyone gone through this?

Hi!

Firstly, thank you for reading and being willing to help!

Okay, now to history;

I've had severe period pain since I got my period more than 20 years ago (32f).

In the last two years my period cramping has extended down into my legs and groin and I've had increasing and recurrent episodes of severe pelvic pain on urination that continues after urination is complete for 30-60mins (no UTI, just pain). I've had this type of weird bladder pain for about 5 years total, just worsening a lot now.

I also have vulvodynia, recurrent episodes of abdominal pain (severe for 1-2hrs, then progressively lessening over a few days) for over 10 years.

I had an ultrasound which showed a few cysts and an endometrioma resulting in presumptive diagnosis of endometriosis.

My pain is...manageable. It's all I know so I'm used to it. I have, however, had progressively worsening fatigue for a year or so.

Regarding next steps;

I am hoping to get pregnant in the next few years.

I cannot take combined hormone birth control d/t some vasoconstrictive disorders..admittedly my docs treating this also recommended not taking ANY hormonal birth control.

My provider recommended hormonal birth control first until we discussed the past recs then suggested surgery.

Given that my pain is manageable and I'm trying to preserve fertility...what's my best bet? I was reading that ovarian surgery can impact ovarian reserve?

Hi all! I was officially diagnosed with endo at the beginning of this year via MRI (to confirm location of fibroids; a whole separate story). Since then, I’ve managed my main symptoms: excruciating pain in my back before my periods and extreme fatigue with BC.

Recently, I started exercising because I’m 30 now and want to feel more agile. The problem is, every time I jog for 3 miles or 5k, the next day I am FATIGUED. The same fatigue I felt on and off with the changes of my cycle.

I know that not every pain that happens in my body is because of endo, and yet, it feels connected. Like my body cannot recover as quickly as it should from the inflammation of exercising and pushing my body.

Does this happen to anyone else?

Adding that I have unexplained low ferritin/iron that I am getting checked soon with endoscopy/colonoscopy. Which might be related to this, but don’t want to also just pile every symptom on the iron.

Hi i was diagnosed with endo in april of this year as a teen, I had my symptoms for around 4 months and was confirmed with my symptoms and an ultrasound showing my ovaries in odd positions (but not cause for concern) presumably due to scar tissue.

I always wanted to be a mom I really liked the idea since I was a kid, now as a teen I obviously have no plans to currently get pregnant or married but I know what career I want to pursue and know that it might intervene with planning a family but I atleast want to know before-hand,

Is there any tests that can check to see if I’m infertile or if I’m more likely to have complications like a ectopic pregnancy?

Thanks 🫶🫶

Last week, I made a post stating that the laparoscopy for my wife was unsuccessful. Here's a link: https://www.reddit.com/r/Endo/s/sMBeVN2U0e

Update: we decided for open surgery (laparotomy) and this took place today. A regular surgeon was able to cut into the left side of her lower stomach and remove all the pelvic and bowel adhesions and so the frozen pelvis issue is solved. Previously, the adhesions extended from the pelvis all the way to the upper abdomen above her belly button. The Endo specialist was able to remove all the endometriosis in and drain the hydrosalpinx in one of her tubes. The other tube could not be rescued. However, we were told to forget about natural conception due to the high risk of ectopic pregnancy. The Endo specialist told us that am IVF pregnancy has a good chance of surviving because the environment in her body is now conducive and much better than before. He also said he implemented a procedure to ensure that the adhesions don't return. I don't remember how he described it but that's basically the gist.

Even though we're still gonna speak to the specialist in a few days, I wanted to hear some of your experiences and possibly share with my wife.

Are there cases where a woman gets pregnant via IVF after recovering from severe endometriosis and pelvic freezing? Could the removal of her endometriosis, cysts and adhesions have any positive impact on her egg quantity/quality?

Thanks a lot in advance.

What started as a horrible week has slowly progressed to a horrible every day and I feel like my Endo and Adeno symptoms have just become enmeshed into my daily life.

This practically invoves all of my symptoms plus a lot of new fun ones I didn't even know existed but can we talk the heavy hormonal aspect?? I've had the most effortlessly clear skin (and small B cup boobs) my entire life until i'd say late last year when I started noticing breakouts and general discomfort in clothes. I've taken Vienva ever since I was about 17 or 18 which I believe has contributed to my great skin but even as I was on it last year being 23 I noticed the decline. I ended up coming off of it for a few months before resuming and I swear my skin and boobs haven't been the same since!

Every single day now (no matter what I do) I have terrible cystic acne that just won't calm down and big, heavy boobs that HURT 24/7. Sometimes I look at myself naked in the mirror with my iron depleted face and bloated uterus and sore boobs and I honestly feel like a post-partum mum. On and off the birth control, hormone tests show that I'm pretty much normal including my estrogen and estradiol so.... what is this? and why is this happening and what can I do to make it stop :')

I've been on Vienva (also called Lutera) for about 6 years and I've experienced zero side effects and it actually helps tremendously with my PMDD but over time my endo & adeno symptoms and bleeding have gotten so bad that my quality of life feels like it's in the negatives. It seems like there aren't any decent options available for treatment that also help with PMDD but I have to try something different.

Has anyone switched from Vienva to Yaz or could tell me about their experience using Yaz for Endo/Adeno?

I had my surgery in Feb of this year to remove my endo. Since then I’ve had a slew of issues and been diagnosed with hEDS. I’ve been doing pelvic floor therapy consistently since. I now have a pelvic organ prolapse. It’s been about a month and a half I’ve been living with it. I’m working on finding a new gyno and getting a hysterectomy and ovary removed as well as the endo that I can tell is already back.

In the meantime what do I even do? I’m so incredibly uncomfortable in my body. It’s a very embarrassing thing to talk about .Mentally I’m really struggling with this

i am currently awaiting my GYNAE appointment to begin investigation into potential endometriosis, i’ve had horrible periods since i can remember but in recent years with being on the pill, they’ve eased up until about late february this year.

i began to experience incredibly painful bloating, and it made me feel like i was tearing apart despite that not being the case at all. it would happen a lot after emptying my bladder, eating, the whole shebang really.

now for reference, i am a size UK 4/6. my stomach is rather flat, and i am fully aware i am thin. but after being told for so many years by people that they “envy” my body, and my body being such a topic of conversation, this bloating has made me rather insecure. not to mention that the bloating has been pointed out by people which is another reminder that it’s not just me.

it also has become very apparent to me when i am bloated, as i can feel it but i also see the difference in the body i was used to. when i express how im bloated and how its causing me agony, i am met with a lot of “you wouldn’t know the meaning of bloated,” or, “you should see me on my period.”

i get what they’re somewhat meaning, they want to reassure me i do not look how i feel but it can be worded in a way that brushes off the fact my bloating is no longer normal. i have stopped wearing the type of clothing i normally do, or im constantly holding my stomach out of insecurity and whenever i try to broach a small conversation of how its impacting me, or simply how its making me feel, i am just met with comments about how i should be grateful im skinny because “they’re not” and thats its not as bad as it could be.

in no way am i trying to show off or anything like that here, i can just find it upsetting when i am in so much pain on top of feeling uncomfortable in a body that’s been “praised” unwillingly for years and is now not what it used to be. and i cannot talk about it with majority of those i love most because it’s somehow turned into a competition of debating weight and what bloating really is when that was never the intention.

Just wanted to share part of my discusison post for school :) I will DEFINITELY be expanding on this for my end of term STEM project, I'm already excited🤓

Have any of you gotten your excision surgery with Dr Stepp in Charlotte, NC?

1) How was your experience? 2) What stage endo were you? 3) How was post-op care? 4) If you were treated in the Medical Center, were you able to stay overnight or is that just if you have the surgery done in hospital?

Thanks!

Any one diagnosed and not looking to conceive? I’m 35 years old. I had a tubal ligation 14 years ago I was just diagnosed with right hydrosalpinx: 5.9 × 2.0 × 2.2 cm — an enlarged,fluid-filled fallopian tube. After excruciating right groin and right lower back pain. Got discharged with antibiotics, pain medication and follow up appointment. Anyone here who has had same or similar experience? What to expect? Thank you in advance.

> motivo di esecuzione: dolore intestinale

Compatibilmente con il proiettarsi in ambito addominale di intensi artefatti di origine colica,

che riducono considerevolmente il normale contrasto ecografico:

Fegato regolare per morfologia ed ecostruttura, conserva tessitura fine ed omogenea.

Colecisti in sede, normodistesa, contiene numerose piccole formazioni calcolose. Via biliare

principale e vena porta nella norma.

Pancreas regolare per morfologia ed ecostruttura.

Milza non ingrandita con ecostruttura omogenea.

Aorta regolare per calibro e decorso, non si apprezzano tumefazioni linfonodali lombo

aortiche.

Reni bilateralmente in sede con corticale ben conservata, non idronefrosi, non calcolosi.

Vescica moderatamente distesa a pareti apparentemente regolari, non si apprezzano

immagini aggettanti nel lume. Utero mediano, non tumefazioni pelviche.

Ho fatto un eco qualche giorno fa, questo è il referto. La mia dottoressa attualmente mi vuole solo far ripetere gli esami tra 2 settimane, perchè era uscito qualche valore alterato. Ma secondo me non si sta focalizzando sul problema principale che tuttora persiste. Voi cosa consigliate ?

Hi all,

I have endo, as confirmed by a diagnostic/excision lap in 2023.

Recently my pain has increased drastically, despite being on BC. For a second there I thought it might be related to an ovarian cyst, but an ultrasound showed that my cysts were normal. Unfortunately it did show growth inside my uterus (most likely adenomyosis).

I went to a new dr today, and she told me that basically surgery was pointless, as it would never remove all the endo, and that the only solution for adenomyosis is a hysterectomy. As such, she recommended i take lupron depot for 6 months.

My questions:

-Does anyone have any experience with Lupron depot?

-Is it true that there is no surgery for ademyosis (besides a hysterectomy)? I was under the impression there was.

-does Lupron depot reduce the amount of endo in my body or just make it dormant?

-is there any other option my dr and i are missing?

TIA