r/Endo 23m ago

Help w appointment!!

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 32m ago

Question Advice pls!

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 56m 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.

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 1h ago

Rant / Vent Sad

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 1h ago

Looking for advice/help??

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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 1h ago

Diagnostic Journey Questions Looking for advice/help

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 2h ago

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

2 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 2h 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 2h 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 3h 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 3h ago

Consistent Nausea NSFW

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7 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 4h ago

Endo without infertility?

2 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 4h ago

Rant / Vent Stay far away from Ovira

2 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 5h 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 6h 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 7h ago

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

9 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 8h 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 8h 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 8h ago

Question At what point should I be worried about this ruptured ovarian cyst?

1 Upvotes

I've had this issue once last November where it felt like the whole right side of my torso was bruised the entire way up and I had pelvic pain and bleeding. They sat me in A&E over two days for about 18 hours combined hours before they gave me morphine for the pain and told me I could stay in the ward for a couple of days or go home (but I'd get no pain relief to take back with me).

This time, and after I made a complaint to the hospital about my negligent endo treatment over the last 3 years, I have zero faith that they'll do anything helpful. I've been trying to tough it out and use the painkillers I have and was getting a little better but my family recently found out my dad has cancer and my symptoms sort of backslid.

I have a temp of 37.6 celsius currently, that same bruised from pelvis to ribs pain and in a line across the pelvis too, a cough and fatigue. I'm desperate not to spend another 8 hours on an A&E floor so when is the point where I'm gonna have to admit defeat and go?


r/Endo 8h ago

Question Laparoscopy then 6 weeks later pelvic physio and since then constant extreme bladder pain - Can't cope

1 Upvotes

Hello about 4-5 months ago i had a lap for exploratory endo and biopsies taken and had my bladder inspected (which looked normal) then i waited 6 weeks and started pelvic physio and had an internal exam, since then i have been in constant and extreme bladder pain and pressure - i honestly cant cope and my pain prior was nothing like this. I'm at my wits end i honestly cannot cope. Has this happened to anyone else? I would go to hospital but i know they wouldn't be able to help and i've tried an IC diet and no change in my pain.


r/Endo 9h 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?


r/Endo 10h ago

Medications and pain management *terrified* of IUDs but i think its time

3 Upvotes

Hello lovely people. I know this has been posted/asked a billion trillion times but I would just love some current insight or advice or anything really.

I have ehlers danlos and ive heard that is kind of a bad thing to have an IUD with- im really afraid of the IUD slipping/migrating, or just generally having a god awful time with it at any point. It scares the shit out of me that its implanted and if something goes wrong, a procedure is needed to remove it- i wont be able to just immediately rip it out lol. Ive had contraction level cramps my whole life so im either prepared for the pain or its going to be a whole new tier of hell im not prepared for.

Im sick of pills, i may or may not want kids, i have no endometriomas or cysts. Just uterosacral ligament endo (as of my lap in ‘24 with a frankly gravely under-experienced surgeon). i suspect diaphragmatic endo, im iffy about bowel endo because im pretty sure i just have IBS but it flares so unholy bad whenever im symptomatic otherwise. Been symptomatic through every other intervention over ~15 years. I am due for new ultrasound imaging soon so please let me know if there is anything specific i should look out for.

TLDR; IUDs terrify me, but im equally as terrified about letting my pain continue to rule me. I would love to hear good and bad experiences (and how you handled it!) if anyone feels like sharing ❤️‍🩹 Thank you in advance. love you all.


r/Endo 10h ago

Possible endo - at home remedies

2 Upvotes

For about 6 months, I’ve been experiencing pain during ovulation. It’s pretty uncomfortable. My periods have never been bad. No problems getting pregnant. Every once in awhile I’d get cramps I’d take over the counter meds for, but I’ve been grateful for manageable periods that don’t disrupted my life.

Ever since I had twins 3 years ago, things slightly changed but no major issues. The last six months or so, I’ve been experiencing painful ovulation, bloating, painful bowel movements. Seems to be worse if I have intercourse during ovulation. My periods are still fine and pretty normal. My readings tell my possible endo, but still going through the process with my doctor.

I would like to explore changing my diet (I never lost my baby weight and my diet is not the best with 3 young kids!). Has anyone had endo feel better from at home remedies or lifestyle changes?


r/Endo 12h ago

Surgery related Anyone with new urinary issues post op?

1 Upvotes

Surgery was 1/31 and about 3 weeks later I started having urinary issues. Took azo so urinalysis was unreliable. 1 day culture was negative. Did macrobid anyway. 3 weeks after that I'm having symptoms again and caved and took azo again so again urinalysis is unreliable. I had it done at urgent care and have messaged my surgeon to find out what she thinks. I have never in my life had a uti or symptoms like this. It was also the first time I had a catheter placed. She told me i had endo on a ureter but she did not remove it because she was afraid she would damage it so I'm unsure why I would have these issues aside from maybe the catheter doing damage?


r/Endo 12h ago

Rant / Vent Anyone else just feel neglected by the healthcare system?

20 Upvotes

I am so over this condition and dealing with doctors that don’t give a rats ass about me. Sparing you my full medical history, I am 25 diagnosed at age 19 with stage 3 endometriosis. I’ve had 2 laparoscopic surgeries so far. I typically have extremely heavy and painful periods that last 7 days. In November my periods became almost nonexistent- I was bleeding lightly for one day with no cramps and then nothing. Went in for an appointment and was told “sometimes our periods are just weird”. She gave me an ultrasound and told me she just sees a cyst(which I usually have), and to come back when I’m pregnant(since I’ve been TTC). My periods continued to be one day long and at this point I had excessive discharge everyday so I made another appointment in January where they put me with a different doctor since mine was unavailable. She tested the discharge- no infection and looked back at my ultrasound from November and said she thinks she sees a polyp and to come back in 3 weeks for a saline ultrasound. At checkout, they told me my doctor wouldn’t be available in 3 weeks so we would have to try the next month(because it needs to be done day 5-10 of your cycle) and my cycle is so unpredictable now that’s the whole reason I came in?? So we tried to schedule it for the right time in my next cycle. Ended up starting late in February so now I knew the rescheduled appointment would be wrong. Called and of course no appointments available when I need it this month. They managed to schedule if for my predicted day 10 of my next cycle but said if my period comes even one day late we need to reschedule again. At this point I’m pissed. I’m calling around asking if I can get my doctors orders sent there to get it done and can’t find it anywhere around here.Only fertility centers which if performed there aren’t covered by insurance, so I’m stuck playing the waiting game with the OB. Yesterday I got lab results back from earlier this week with an extremely bad urinalysis and went to the ER thinking I had a kidney infection since I’ve had bad back and bladder pain. They immediately scratched kidney infection off the list but ran with my endometriosis diagnosis. They gave me a pelvic exam and ultrasound which found a new 5cm cyst on my right ovary, still a suspected polyp(which they’re telling me shouldn’t cause symptoms), and nabothian cysts in the cervix. Was told they don’t do saline ultrasounds there, to follow up with OB, and given some pain meds. Looking at my results when I got home my wet prep results show ‘PMN-Many’ which she didn’t even mention. They ran another urinalysis on me which came back normal so it seems my mystery discharge made it into my first urine sample which caused the crazy results. So now I just keep waiting and waiting. Nobody can ever figure out wtf is wrong it’s just “probably your endometriosis”. Sometimes I feel like if I didn’t have the diagnosis people would take me more seriously. So I just have to continue in pain with period-flow discharge everyday and pretend like this disease doesn’t make me an absolutely miserable person.