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Endometriosis/pcos/other reproductive diseases

ruca187 April 25th, 2023

I am looking to find others who struggle with diseases such as endometriosis. Both for support and to support. Preferably people who do NOT feel that Nancy's Nook is the end all be all of the disease, or that they have the cure as they act. This is nothing at all against anyone who has had success from that area. By all means I would still love to chat. I've just had people jump down my throat over the years about that little corner of the internet and how I must not care to be "healed" if I can't drop insane money for a private practice. ANYWAY, I'm desperately looking for some people to connect with who understand what these diseases mean. I have an appointment coming in a week with one of the top hospitals in my state to hopefully, finally, get some help. After many years of medical gaslighting, brushing off, and more, I'm hopeful this time I get help. I'm equally terrified the usual will happen. I'd love to have anyone to talk to, even if just until my appointment, but hopefully longer.


For anyone who has read all of this, I appreciate you.

For anyone dealing with the same feelings or struggles, you're not alone, I see you.


Thanks to anyone who reads this. 🖤

12
MusicLeigh May 5th, 2023

@ruca187

You are definitely not alone here. I was diagnosed with PCOS back in 2019 and I'm still fighting for more answers. I have also dealt with years of medical gaslighting and being ignored and such. I am under investigations for possible Endometriosis and more recently been mentioned, Adenomyosis.

I have heard a lot about Nancy's Nook myself, however, not a lot of good things. Hopefully, this community will be more positive for you.

I wish you all the best with your upcoming appointment and sincerely hope it is very beneficial to you and you get the answers, treatment plans and support you deserve and need. 🧡

1 reply
ruca187 OP May 7th, 2023

Thanks @musicleigh


I already have an endo diagnosis but no Dr has really treated it properly to get it managed. I like the new Dr. Idk how much I trust her already but still. I have a MRI and ultrasound in June to look for more adhesions and tumors. November I see the endometriosis specialists and plan extensive surgery. I feel like I'm getting somewhere. But not holding my breath. Not yet at least. I got my test results and the 2 most "alarming" of the bunch is iron and thyroid. Neither are surprising though. No clue what the plan is for those yet.

1 reply
MusicLeigh May 7th, 2023

@ruca187

It is sounding positive but yeah, I don't blame you for not wanting to hold your breath or get hopes high. I really hope this is a more positive path for you and you'll get the treatment you need to help.

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MistyMagic May 9th, 2023

@ruca187 Hi there, I am sorry to hear about your different diagnoses, I have moved your post to the Women's Issues community and reproductive health where others are talking about these topics, hopefully, you will get more replies here too.

Listening - One Step At A Time!

1 reply
ruca187 OP May 22nd, 2023

@mistymagic




Thanks. I honestly didn't post there because of thentypes of posts I was seeing there. It didn't seem like a safe space for me at the time.

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tealPark1424 May 14th, 2023

@ruca187

I've never heard of Nancy's Nook, but I can relate.

I have PCOS and I'm considering trying doctors again. Going privately is costly, and as much as it sounds like it would save a headache (referrals and such), I got matched with an endo I see poor reviews for.

Apparently, I need to wait three months after BCP for proper testing so I'm waiting and then I'm going to see about a walk-in clinic for a referral somewhere I guess. I don't have a family doctor (on the waiting list...) which makes this all annoying. I'm not interested in TTC, just for my health.

I'm glad that you're having a good experience so far with this doctor, wishing you the best! Keep us updated!


2 replies
ruca187 OP May 22nd, 2023

@tealmark1424

I absolutely know how you feel. Avoid Nancy's nook 😂. Do you have any endo specialists in your area?

1 reply
tealPark1424 May 22nd, 2023

@ruca187

There is a city nearby I could go to that does have some endos. Ironically, I just decided to reach out for a referral today through a virtual walk-in clinic. I just got some requisitions for some tests that would then need to be sent to a specialist, but getting the tests done in the first place since I live in a rural area is going to be a PITA.

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GermanZebraCupcake May 22nd, 2023

@ruca187

I have PCOS myself and I so deeply empathize with you on the pain of trying to get help when you can where you can and still having people place judgement. My heart is with you!

1 reply
ruca187 OP May 22nd, 2023

Thanks @germanzebracupcake it's appreciated it. Unless you have it it seems no one gets it ya know?

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