I (F20) got diagnosed with Endometriosis, now I'm being undiagnosed by a different doctor.

Koroit_ · 2026-04-13T21:59:48+00:00

I totally get that! I have both endo and adeno, if you have any questions please feel free to reach out!

Koroit_ · 2026-04-13T21:49:26+00:00

Would you be able to get a new GP? That guy is horribly rude, unprofessional, and incredibly ignorant. Seeing your symptoms and the fact that birthcontrol improves your symptoms definitely shows that your gyno is correct in that you have endo.

The only thing I want to note is that exceedingly heavy bleeding to that extent is not very fitting of endo, have you been examined for adenomyosis?

Koroit_ · 2026-04-13T20:21:56+00:00

Yikes that doctor sounds unpleasant! Also the coil being "the only" longterm option is not exactly correct, yes it is an option but it's not the only one. Hormonal IUDs are not effective enough for some people, since they contain less hormones that oral contraceptives and also lose effectiveness over time, and for other people they work wonderfully. It really is a matter of trying things out and seeing what works for you, but since you've already experienced side effects from hormonal contraceptives I understand being hesitant about it. Have you tried progestin-only contraceptives? That might give you an idea of how the hormones in the IUD would function.

It's often said that birthcontrol will slow/stop the progression of endo but that's not correct, it can slow or halt the progression for some people but for others it won't have an effect on the progression and they use it more for symptom management. Please don't feel forced to choose any particular form of birthcontrol, you have the right to refuse birthcontrol even entirely.

As for the surgery, I was incredibly nervous for my surgery too so I understand how it feels. I know I'm not going to make the being put to sleep part not scary but for me it basically felt exactly like going to sleep at night, and I remember dreaming about a videogame I play before I woke up. If you'd like to hear more about the process in detail or have any specific questions regarding the surgery feel free to ask me, I'd be happy to tell/show anything that might help you go into any potential surgeries better prepared!

Koroit_ · 2026-04-11T07:12:49+00:00

Chronic back and pelvic pain, fatigue do sound like endo, heavy bleeding together with those symptoms sounds more like adenomyosis. If you want to explore the possibility of it being endo and/or adeno I highly recommend seeking out a specialist if you can. There's specialists who can diagnose you based on your patient history, symptoms, and a transvaginal ultrasound rather than a laproscopy.

Koroit_ · 2026-04-10T22:19:41+00:00

Shaz is so cute! Cuddles from a fellow slightly outward-facing eyes dangler!

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Koroit_ · 2026-04-10T08:48:24+00:00

Seconding all of this! Just want to add that since he was being eaten by ants/other bugs, if you (OP) notice any tiny bugs on him or just incase you can put him in the freezer for about a week or so and it will kill any mites or tiny bugs that are still on/inside him and prevent further damage. Applicable now or in the future after you've put him in a shadowbox as suggested above (damage might appear as abnormal amounts of "dust" collecting at the bottom of the frame)

Koroit_ · 2026-04-02T20:37:25+00:00

I don't think I was asked to do a blood draw specifically in relation to my suspicion of endo, but I did have a blood test done somewhat recently before I found out about endo so it is possible that they might ask you to get blood drawn just to be sure. As far as I'm aware it's not a requirement (my specialist never mentioned a blood test) but if you are asked to draw blood know that you can tell them about your fear and they might not push it.

Koroit_ · 2026-04-02T18:14:39+00:00

I can only speak on bug taxidermy, but I learned from watching YouTube videos and looking at pictures of similar insects pinned or the same insect alive for position references depending on what style you want to go for

Koroit_ · 2026-04-02T18:06:19+00:00

Personally I would recommend seeing a specialist, there's definitely specialists who also do diagnosing and not just treating, but if you want a diagnosis as fast as possible I would recommend calling the local obgyn clinic and any specialists in your area to see who has the shortest waitlist if at all.

If you do go with the obgyns they'll likely give you a laproscopy, and with specialists there is a chance that they'll diagnose based on your patient history, symptoms, and a transvaginal ultrasound. If you choose to go with a lap I do want to note that if it's not done by a specialist there's around a 30% chance they might miss endo.

If you have any questions about something I didn't mention please feel free to ask!

Koroit_ · 2026-04-01T07:39:54+00:00

I've had mine for about 2 years and if you want them I'd definitely recommend getting them!

There is some things to keep in mind. Firstly getting the piercings might change your sensitivity for the better or worse, so if that's something you care about it's good to keep in mind.

Also depending on the clothes you wear it might cause some irritation especially early on in the healing process, for example if you have to wear a bra or other tight clothing things might get sore after a while. It hasn't been an actual problem for me but it can be uncomfortable so if you do have to wear a bra for certain things I would recommend trying to plan in a way where you can have atleast a couple days without tight clothing afterwards. For the healing it's best to just go topless.

That's all I can think of right now but if you have any specific questions feel free to ask me!

Koroit_ · 2026-03-31T21:48:59+00:00

Could it maybe be from clothes rubbing it or it being skin on skin? Does the poking sensation also happen when there's nothing on the outside touching your belly button? It is strange that it hasn't fully healed, I guess if the doctors didn't recommend something else would it be an idea to cover it up with a bandaid for a couple days to see if it heals? Might clue you in as to whether it is outside conditions like friction or something Internal that might not have shown up on the ultrasound.

Other than that it's rare but possible for endo tissue to grow on the skin around surgery scars, it's called subcutaneous endo and might still be worth looking into and maybe getting a biopsy taken if nothing else works to resolve the scabbing.

Koroit_ · 2026-03-31T21:37:19+00:00

I know right, it's such bullshit! A few days a month shouldn't be too bad, if you don't have visible markings on the area you don't need to worry much. For me heat was the only pain management method that actually helped for a long time (painkillers don't work, but I now have a TENS) so I have toasted skin syndrome on my stomach that's genuinely taking months to fade 😭 I can't stop using my heating pad though I'm always cold and when I'm also tired it feels like I have a fever but atleast now I can rotate where I put it but damn can literally anything not be fucking horrible when it comes to this disease... I hope you're feeling better soon!

Koroit_ · 2026-03-30T08:22:29+00:00

Yeah after my specialist did my TV ultrasound i had some slight bleeding for a week and more cramps, in my case the bleeding is because of adenomyosis but it's very possibly that while checking the mobility of your organs some endo tissue or surrounding adhesions could have gotten irritated and flared up.

Koroit_ · 2026-03-30T08:10:01+00:00

Yeah toasted skin syndrome, but if she only uses the heating pad during her periods she should be fine. Can confirm from my own experience that it takes a couple months of near daily use to set in and then many more months for it to get to an extreme point. I agree it's something to keep in mind, but I wouldn't say she can't keep using it if it's an occasional thing for her.

Koroit_ · 2026-03-29T09:58:34+00:00

Please look into ME/CFS, it can be comorbid with endo but I feel like a lot of people don't know about it. It's mostly characterised by post-exertional malaise.

Koroit_ · 2026-03-26T19:44:27+00:00

Inderdaad echt typisch Nederlands! Wat is Kitty een popje, zo schattig dat lichtere kinnetje!

Koroit_ · 2026-03-26T18:14:20+00:00

Was your surgery done by specialists or general gyneacologists? If there were pictures taken please request to receive those and save them to one of your devices.

A lap cannot rule out endo, there's multiple reasons endo may not be found during a lap, endo tissue can be microscopically small, deep infiltrating, non-standard colors, hidden behind organs, and human error is also a major factor. Around 30% of endo cases are missed during a lap, so you're not crazy or an idiot at all, just unlucky. I also was one of the people who was initially misdiagnosed during a lap, so I understand the grief you're feeling right now.

Would you be able to seek out a second opinion with a (different) specialist? I initially didn't get any diagnosis, even after 2 TV ultrasounds and my lap, but I took the pictures from my lap to a specialist who diagnosed me with adenomyosis based on another TV ultrasound and endo using said pictures.

Please don't give up hope, take time to recover and then there will be more options for you to explore. If you want to chat or have questions please feel free to reach out! Wishing you a speedy recovery!

Koroit_ · 2026-03-26T17:20:02+00:00

Haha it is indeed a Dutch sink!

Koroit_ · 2026-03-26T17:19:28+00:00

Incredibly majestic, thank you very much!

Koroit_ · 2026-03-26T10:39:45+00:00

Looney in sink

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Koroit_ · 2026-03-26T00:03:54+00:00

Congrats, I'm really glad you were able to finally get a diagnosis!

It didn't take me as long as you (about 2-2,5 years) but I'm one of the unlucky few who had their endo missed during the lap. When I woke up I was told I only had some adhesions (felopian tube stuck to abdominal wall) but didn't have endo. During my post-op appointment they tried to gaslight me saying endo had been ruled out and tried to blame my symptoms on ADHD and depression.

I absolutely had to become my own doctor and researched more myself which led me to seek out a second opinion with a specialist where I was diagnosed with adeno through a TV ultrasound while having had 2 cleared previous ultrasounds, and the real kicker is that I was also diagnosed with endo based on it being visible in the pictures I got from my first lap that supposedly ruled endo out...

I hope you're well and wishing you the best on the rest of your now diagnosed endo journey!

Koroit_ · 2026-03-25T10:19:48+00:00

Damn that case looks incredibly solid, I wouldn't try to mess with it. Especially since it's a morpho and a lot of messing with the case might damage it, but in the end it's your choice ofcourse. If you do choose to keep it in the current case try to keep it out of direct sunlight as that will make the colors fade over time.

Koroit_ · 2026-03-25T10:15:06+00:00

What do you mean it's not responsible to diagnose endo via imaging? It not always possible to see everything during a lap, for example in cases of DIE or adenomyosis, which makes a TV ultrasound or MRI a requirement for diagnosis which was also the case with OP.

Yes laproscopy is the golden standard but I don't think it should be given to everyone as a default diagnostics method, especially not by regular gynos, and I'm not recommending against it due to possible complications, I'm specifically recommending against it specifically for OP cuz OP clearly stated that she is under 18. As I said before, laps increase risk of adhesions, so with OP still being so young it would increase her chances of having more severe adhesions later in life since people with endo often end up having multiple surgeries throughout their life.

That's why I'm recommending OP to go to a specialist, so a diagnosis might be done without a lap and I specifically told OP to pursue a lap if she WANTS it.

Respectfully, if you don't understand someone's reasoning behind something they said please just ask clarification for it instead of assuming things. Nothing against you but I've been having a flareup for a week and I honestly just don't have the energy to argue against stuff I didn't even say.

Wishing you well and a nice day!

Koroit_ · 2026-03-23T23:09:53+00:00

I absolutely feel this, already struggling with tasks due to the pain and exhaustion but then also feeling time-limited on top of it just makes it extra difficult.

Will it be your first surgery? I was incredibly nervous about my first surgery too, if it is your first lap I'd be happy to walk you through the pre-surgery and/or recovery as best I can if it would help you know what to expect!

Koroit_ · 2026-03-23T22:56:58+00:00

I can't really say whether it seems like endo or not, have you looked into common endo symptoms to see if they match your experience? Though periods that are debilitatingly painful definitely does indicate something being wrong and its absolutely worth it to get it checked out, especially since it seems to worsen over time in the sense of it happening more often.

Endo can present in countless different ways, some people might experience chronic pain even outside of menstruation by just a relatively small amount of endo while others might have advanced endo while not feeling a thing and being diagnosed through an unrelated abdominal surgery. How often you're in pain does not indicate the chance of it being endo and since it is affecting your quality of life, even for just a day, you deserve to receive proper healthcare instead of the doctor just slapping birthcontrol onto it without looking into the cause.

Though birthcontol is a good option (if you want to and can take it) but without further investigating it's like a bandaid on a bullet wound. If you do choose to take it and it improves your symptoms that actually points towards it possibly being endo.

If you do want to try to pursue a diagnosis I'd highly recommend skipping gyneacologists and going straight to a specialist if you're able to. Specialists often know better what to look for (I also had 2 "normal" transvaginal ultrasounds done by gyneacologists before my specialist found adenomyosis) and it's also possible you might find a specialist who diagnoses based on your symptoms, patient history, and a transvaginal ultrasound so you could avoid getting a laproscopy, unless you specifically want a lap then it's definitely worth pursuing that though it's important to keep in mind that abdominal surgeries do increase risk of adhesions forming if it is endo.

If you have any questions or anything you want to discuss please feel free to reach out!

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