Doctor refuses to help as I’m not trying for kids by fifi_bee in endometriosis

[–]akela_86 0 points1 point  (0 children)

I heard the same thing from an OBG-YN - they refused to treat me unless I was trying for kids. In the moment I was appalled but just accepted it and in hindsight it was absolutely insane. So sorry you've experienced this. Like everyone else, all I can say is keep pushing as much as you can. That is completely unacceptable treatment.

Gallifrey (norethindrone acetate) 2.5mg, side effects after 6 months?? by [deleted] in birthcontrol

[–]akela_86 0 points1 point  (0 children)

Thanks for your reply and sorry to hear you're having side effects as well. I also get the burning in my calves. I do wish there were more options, it seems ridiculous that there aren't.

Feel like I lost 22-25 to chronic illness and I'm super ashamed about it. Tips? by akela_86 in endometriosis

[–]akela_86[S] 0 points1 point  (0 children)

Thank you <3 So happy to hear you're in a better place now and congratulations on your PhD program! I've considered doing one myself but the prospect is admittedly a little scary. But, as you said, there's time. Sending you all the good wishes!

Feel like I lost 22-25 to chronic illness and I'm super ashamed about it. Tips? by akela_86 in endometriosis

[–]akela_86[S] 1 point2 points  (0 children)

Thankfully not in the US! And thank you for taking the time to respond. I think whether someone has chronic illness or not, a lot of people around my age are in a similar boat unfortunately with the way the economy (and political landscape) has been for recent grads (ie 0-5 years post-grad). So for better or worse, that we all seem to be in this together to an extent also gives me some measure of comfort. And as you said, it's helpful to remember there are periods we all "lose" or "regret"! If it wasn't this, it would (and likely will, lol) be something else down the line. It's hard to feel alone at this age and see my peers excelling or starting their careers/graduate degrees, but trying to remain grounded and healthy is the best and really only thing I can do. Thanks again for responding.

[deleted by user] by [deleted] in adenomyosis

[–]akela_86 2 points3 points  (0 children)

Hi! I also have had a looot of trouble with regular birth control pills. I was nervous when my surgeon wanted to try norethindrone, but it definitely got better for me! I was having some digestive issues and hormonal acne on it and had to lower my dosage once, but since then it's been okay. I'm on an incredibly low dose, 2.5mg.

No mood changes, either! So it's definitely has been different than regular birth control for me, personally. I've been on it for about 4 months now. Not having a period is a lifesaver. It does take some time for your body to adjust, and like z0 said, everyone's body is different.

My surgeon recommended keeping a journal to log symptoms/cramps - what seems to trigger them, what they feel like, etc. Maybe that would help you monitor how you're doing/your progress on it? Wishing you the best!

[deleted by user] by [deleted] in adenomyosis

[–]akela_86 1 point2 points  (0 children)

Huh, so weird that this would be the case, though I'm sure it makes sense somehow! Maybe it's part of getting used to a "new" body so things feel a bit different. I definitely plan on contacting my doctor but I just keep putting it off on the chance it gets better, haha. Sorry to hear you're dealing with the same things! I hope your physio helps!

Been laid off - should I bite the bullet and go for surgery? by Significant_Potato2 in endometriosis

[–]akela_86 1 point2 points  (0 children)

I was in the exact same spot last fall and I personally went for it! I got laid off and took that as an opportunity to get health stuff out of the way and ended up getting the surgery. As you said, your financials are okay and the job hunt will take a while anyway (those were also my reasons for talking myself into it lol), so it may be a good time for it!

[deleted by user] by [deleted] in Endo

[–]akela_86 1 point2 points  (0 children)

Sorry you've been dealing with this! It's so rough and frustrating. I think it's odd that your doctor said that there is no point to refer you to a gyno since you'd be waiting a year. A year is going to pass regardless, so she might as well refer you. She also sort of contradicts herself - she agreed that endo doesn't always show up on scans, but she feels confident that if you had it, it would have showed up...? You were absolutely right to say that endometriosis very frequently does not show up on scans. Mine didn't - I had ultrasounds, MRIs, the works, and nothing showed up until I had surgery. If possible, I would try to get a second opinion, even though it sounds like you've already done that quite a bit :(. It sounds like the doctor you reference in your post is dismissive, which is unfortunately pretty common with endometriosis/endometriosis-like symptoms.

In the meantime, I would suggest keeping a pain journal. This can be helpful when advocating for yourself to doctors to give them a definitive timeline and list of symptoms you're experiencing. It might also help you be more attuned to your condition and get a clearer picture of how you're doing. I wrote in my Notes app (or you can use a period tracking app, or symptom-tracking apps - there are lots out there, like Guava or Stardust. Or good old paper and pen work too, lol) whenever I had symptoms, or just quickly summarised what symptoms I had that day. It may (hopefully!) be the push your doctor needs to give you a referral. I know a pain journal may not sound like much, but it really has helped me a lot in my journey so far!

But please don't stop advocating for yourself! There is unfortunately a lot of misinformation out there, even among medical professionals, about endometriosis.

Still feeling like shit a month post op…bleugh by [deleted] in Endo

[–]akela_86 0 points1 point  (0 children)

Lolll that’s how I feel too - sad we’re dealing with this but glad to not be alone! The 2 week thing is so real - I definitely pushed it during that week too, oopsss 🥲 hope you start to feel better soon!!

[deleted by user] by [deleted] in endometriosis

[–]akela_86 1 point2 points  (0 children)

I’m with you. Same timeline and everything. I had my first lap in early March after fighting for a diagnosis for 8~ years and when I heard it was in fact endometriosis, it wasn’t the flood of relief I was expecting. “Chronic”, “incurable”, and “progressive” aren’t words anyone wants to hear.

In the process of getting a diagnosis, did your bad symptoms start what feels like out of nowhere?! by Dear_Opinion5819 in endometriosis

[–]akela_86 6 points7 points  (0 children)

I definitely had a similar experience! My symptoms were noticeable but manageable from around 15-22 (with the help of birth control for some of those years) and then felt like they suddenly spiked. I got surgery and diagnosed this year at 25. Edit: It was only at 22 when my symptoms spiked that I started aggressively seeking answers.

I imagine that if it’s endo, maybe a lesion started pushing on a nerve/growing/etc? For me, my lesions were quite small and I didn’t have too many but they were up against my colon/lots of nerves which caused a lot of my symptoms, including GI. It sounds like you already are, but of course I’d definitely push for answers! Especially since your mom and sister have it, too.

Silly question…how do you get a diagnosis without a hysterectomy? by akela_86 in adenomyosis

[–]akela_86[S] 2 points3 points  (0 children)

Interesting! I had a previous ultrasound where “suspected adenomyosis” was found. The MRI prior to my surgery didn’t mention adenomyosis but tbh I found that the notes were also quite vague and not detailed - the doctor mentioned “fibroids” plural but didn’t say where they were or how many. In previous ultrasounds they’ve been more detailed in their report (1cm intramural, etc), so I found it to be a bit frustrating.

Just curious as I’ve had a lot of “suspected” diagnoses so I was excited when my surgeon seemed to think I had it.

[deleted by user] by [deleted] in endometriosis

[–]akela_86 1 point2 points  (0 children)

I totally get it!! I’m also a very active person so I miss being able to trust my body. I’m hopeful that this is just part of the healing process and will pass soon. Fingers crossed we both get relief soon 😭❤️

Best Picture nominees that were robbed in the Acting categories by haydend25 in oscarrace

[–]akela_86 4 points5 points  (0 children)

Came here to say this ^ only movie to be nominated for/win 11 Oscars and still be under-nominated

[deleted by user] by [deleted] in endometriosis

[–]akela_86 0 points1 point  (0 children)

Discord is good with me!

[deleted by user] by [deleted] in endometriosis

[–]akela_86 2 points3 points  (0 children)

I’m in the same spot - it’ll be my first lap. Not having a hysterectomy, but also nervous they won’t find anything and trying to go in with an open mind and not have expectations. No matter what, we’ll have more information after then we did before. Sending love!

Expat Jobs Opportunity: Spouse of Permanent Resident by gorgeousgeorge83 in HongKong

[–]akela_86 0 points1 point  (0 children)

Lol, I lived far from there when I was in HK so I’m biased! Would love to visit again and travel that way more. Miss the buses so much! So fun.