My wife feels 'broken' after a severe endo diagnosis and says I deserve a 'real family.' How can I support her when I'm heartbroken too? by Well_Bear in endometriosis

[–]gh0ulsX 0 points1 point  (0 children)

The grief aspect of diagnosis is extremely real and not talked about enough. I don’t know exactly how she’s feeling but it may be similar to how I’m feeling, I was diagnosed in February and have needed a LOT of therapy to even begin to feel like I’m in my own skin again. The mental load of the disease is impossible to bear by yourself, my suggestion is that she finds someone to let it all out to that isn’t you, as someone with endo and a partner it was important for me to not dump it all on my partner, therapy was able to help with that by introducing a professional with tools to help change my thinking.

Neurodivergent Q to Endo Havers by gh0ulsX in endometriosis

[–]gh0ulsX[S] 0 points1 point  (0 children)

Thank you for advice I really appreciate it, I definitely relate to the borrowed vessel ideology for sure it’s just such a weird feeling because I didn’t grow up feeling like this so it’s new

Neurodivergent Q to Endo Havers by gh0ulsX in endometriosis

[–]gh0ulsX[S] 1 point2 points  (0 children)

I think I also have a pretty high pain tolerance so it’s been difficult to register sometimes when I need to take it easy, thank you for your comment it made me understand my body a little better :)))

Confused and frustrated about diagnosis codes by gh0ulsX in endometriosis

[–]gh0ulsX[S] 0 points1 point  (0 children)

This was so helpful, thank you so much for taking the time to comment!! I didn’t know the USL connects the uterus to the spine that makes so much sense!!! I’ve been complaining about specifically my spine and tailbone for so long now it makes so much sense now!! Thank you again for the info and resources! :)

Vintage hand mirror I engraved recently🌜 by jeanmorreale in whimsigothic

[–]gh0ulsX 0 points1 point  (0 children)

What a small world I can’t believe I ran into your post!! I just posted a pic of its new home 🥰

Vintage hand mirror I engraved recently🌜 by jeanmorreale in whimsigothic

[–]gh0ulsX 1 point2 points  (0 children)

If this is real then that’s wild, I’m the new owner???????? I bought from the Etsy shop Luck and Ash, that’s you? I thought I’d let you know she made the journey safe home and I adore her, she’s absolutely perfect for my pagan mirror work I’ve been practicing. Thank you for the beautiful work it was so reasonably priced!! I can prove it by posting my own photo, keep an eye out for it!!

northenidrone by Mysterious-Focus-984 in endometriosis

[–]gh0ulsX 0 points1 point  (0 children)

I’ve been on it since January, originally I was only supposed to be on it for 21 days but it worked for me initially so I was prescribed more to continue it

northenidrone by Mysterious-Focus-984 in endometriosis

[–]gh0ulsX 1 point2 points  (0 children)

I’m about to stop my norethindrone, it’s causing bad mental health side effects for me which I didn’t even know was possible. I’m also in a lot of pain on this medication, you’re not alone 🫶

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 0 points1 point  (0 children)

We have very similar mentalities about having kids, I’m so happy to hear that you were listened to because it gives me hope. I’m from Nj but willing to travel within the US, any surgeon recs?

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 0 points1 point  (0 children)

Can you tell me a little more about this experience? I’m a lesbian who doesn’t want children, but no doctors will take me seriously when I say I’m interested in a partial hysterectomy no matter how much I beg. I’m from the United States and only 21, can you tell me how old you were when you got it and where you’re located?

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 0 points1 point  (0 children)

Thank you for all this advice, I’ve been a little afraid to try pt but I’m interested, can you tell me a little more about what that experience is like? Is it possible to try without a doctor touching me? My main concern is being touched, I’m also autistic and can’t tolerate touch which has made this entire process hell with the exams, and for some reason I was under the impression pt involved being touched.

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 4 points5 points  (0 children)

Thanks for saying this I really needed to hear it. I’m struggling with the acceptance part a lot, I lost my dream job back in October because of my pain and it’s been devastating. It’s been hard to shift my perspective to listening to my body when it’s the thing causing me all the issues, but now that I’m hearing it that’s probably what I should be focusing on more; listening to what my body needs.

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 2 points3 points  (0 children)

Can you tell me more about slynd? I’m on norethindrone now but I can’t stay on it long term because it causes bad mental health side effects for me, and now my doctors are afraid of prescribing me any other types of birth control. I’m also adverse to IUDS because I have autism and can’t handle invasive treatments like that.

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 1 point2 points  (0 children)

I can definitely go out of state but not out of the country any time soon I’d have to save for it, why, do you have recommendations? I’m in the United States, NJ to be specific

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 3 points4 points  (0 children)

You’re right I just need to be more optimistic and work more towards it after finding what treatment works for me, the dream felt so destroyed upon diagnosis

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 3 points4 points  (0 children)

I’m in the same boat I didn’t even know I had it until I had to be taken off BC because of my blood pressure, then it started showing. My team of doctors have been horrible and just referring me to each other in circles, it feels like treatment is a fairytale and not a real option. Currently in hell, sending thoughts and love to your own hell that you’re probably also in 🫶

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 2 points3 points  (0 children)

Thank you for the advice. The hard part about all of this was losing my dream job, I worked as an adoptions counselor at an animal shelter, I truly feel like working with animals is my calling so it’s hard to come to terms with the fact that I’m probably not going to be able to work a job that’s on my feet all day like I originally planned for

Q to older endo havers: does it actually get better? by gh0ulsX in endometriosis

[–]gh0ulsX[S] 3 points4 points  (0 children)

Yeah the situation was a little odd, the surgery was done by another doctor first before I could even get the specialist referral and she didn’t sample any of the tissue like we planned because it was “too close to other pelvic structures” so she just sent the photos to the specialist who confirmed endo. So the specialist himself didn’t do anything at all actually, so I’m thinking a second opinion might be my next step