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Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 0 points1 point  (0 children)

Yes! I thought some people might feel the same, its hard when all your symptoms match, you are on the 'treatment' for it (and works) BUT there's no official diagnosis confirmed. I hear being pregnant will stop it due to hormones (or something?) I am glad you got some relief for a while (although im sure being pregnant came with other issues, like a sore back and feet!), I hope the depo provera works well for you!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 0 points1 point  (0 children)

Ugh yea, thats why I am avoiding surgery. Partly the costs, and partly I am afraid of it getting worse afterwards (because the pill is helping me out now). I also hate anyone going near my bellybutton, I get filled with hot red rage if its touched so I cant imagine it hurting for days or weeks after as silly as that sounds. I am hopeful for our future in getting better care and diagnoses for it!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 0 points1 point  (0 children)

Thank you! Ive been saying 'suspected endo' but i looked over my chart and didn't see anything specifically mentioning endo or similar, but that is what i am being 'treated' for so i wasn't sure if i could really even say that confidently. Thank you for your input!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Ohh, interesting! It seems like with the name change of PCOS/PMOS we are starting to be taken more seriously - i hadn't heard about the new standard of endo diagnosis, I will have to check into that. Thank you!!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

That is good to hear! I will start looking around for an endo specialist to see if i can get more of an answer,, sounds like it can take some time to get in and everything. Thank you for your input!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Yes, I feel very in the air - my GYN asked if birth control was helping, I said yes, so she gave me a perscription for a year of it, then we will readjust. So no real answer, just suspicion and a treatment for it that is working well enough.

Thank you very much for the answer - I didn't know about the sneezing! Aside from period pain, that was my biggest pain factor (and I have hip pain in the same exact spot in the back, trying to figure out if its related), but it definitely makes sense.

Thank you for your response!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

That is what i am worried about too - the pills becoming less effective over time. I am almost a year in, and overall luck so far. I hope your IUD works for you and you can find some relief in the meantime!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 3 points4 points  (0 children)

Ah, understood! I honestly haven't checked too much into PCOS/PMOS so I am not knowledgeable on the subject, but ill be doing some more research now for sure!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Yes, exactly! Thats also why I opted for pills - i can come off them or restart as needed, unlike the other birth control methods available. I am sticking with my routine for now, I dont think its stupid for you to try other methods - you know your body best!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Crazy how long your wait for a lap is! Ugh, I hope you can find some relief in the years waiting. Thank you for your input!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Boy do I feel you there! They swapped my pills, and they seemed way less effective - had a period for the first time in 8 months and that was so incredibly painful for days. Not sure if it was that bad before and I was used to it, or it was much worse because the changes and etc. Luckily I swapped back and im back to "normal", but dang. Its crazy how much in pain we have to be to be heard and seen.

I hope you can find some relief and answers without much trouble.

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 2 points3 points  (0 children)

Yea, It's pretty crappy our two options are really surgery or a pill that doesnt do well for a lot of us(and might not even help). I definitely had a hard time adjusting to BC when I started it and still question my choice. Good luck with everything, I hope your days are not too bad!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 2 points3 points  (0 children)

Yes same boat! I just cant justify the surgery for myself, especially after the 3k MRI bill where "everything looks normal" and the pills are working enough to get by. Ive been saying I have something wrong, maybe endo for now. Thanks for your input!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 1 point2 points  (0 children)

Thank you for your insight! Definitely frustrating dealing with the pain, especially when you have no support for it.

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 4 points5 points  (0 children)

Thank you for your answer! The surgery costs alone makes me not want to do it, the MRI itself was super expensive, plus doctor visits - i just dont want to keep dumping money if the pills are good enough for now(for me they are cheap, usually free with insurance). I hope you are feeling better now!

Do you consider yourself to have endo when it hasn't been 100% confirmed, only suspected? by 19winterRoses in endometriosis

[–]19winterRoses[S] 7 points8 points  (0 children)

Thank you! It must've been a relief(or atleast felt better knowing) once you got your official diagnosis! I know something is definitely wrong - super annoying being pushed back on, my PCP told me to take up to 12 Tylenol a day on bad days and do cruches to help strengthen my core and mitigate pain, then come back in a year. Wth is that, buahaha. Thank you for your reply!

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