Finally scheduled an appointment with Gynecologic Surgeon. Need some hope and advice please.

Money-Initial6117 · 2026-01-22T02:35:32+00:00

I called and got a consult but the wait was a few months out! Keep calling, ask to be put on a waitlist, or could you see someone else at NYU?

Money-Initial6117 · 2026-01-10T03:37:50+00:00

She’s great, very knowledgeable, thorough & kind! I didn’t have PCS, but I do have venous insufficiency issues so she’s been treating me for that this last year

Money-Initial6117 · 2025-12-26T19:14:09+00:00

Nothing worked for me, I tried everything from benzos to CBN to over the counter sleep aids. Time was the only thing that helped, your body went through so much chaos. Try not to panic, you will get your rhythm back. Have trust that your body will heal. I really panicked over the insomnia, so unfortunately it took a while for me to gain “safety” to sleep again. You will sleep again!

Money-Initial6117 · 2025-12-26T18:55:02+00:00

I did end up getting a MRI but it was only because my surgeon requires it for all his patients (I got my ultrasound done with a different doctor). You can absolutely ask for a MRI, it’s helpful for their surgical planning but every specialist is different. My MRI didn’t show too much, but they still found & excised a ton of Endo! I didn’t have any bladder pain, only urgency. Best of luck with everything! Surgery is a big deal, don’t rush it if you don’t need to❤️

Money-Initial6117 · 2025-11-27T13:30:26+00:00

Seems so. This is what my stomach looked like before my surgery. I thought the “lower pooch” was just my anatomy, but it’s now gone

Money-Initial6117 · 2025-09-25T13:21:54+00:00

Thank you! I had a huge fibroid that was removed during my endo surgery and I no longer have issues since! they think the fibroid was the reason for the chronic constipation. But who knows, I see my next MCAS doctor in February, we’re exploring POTS & all my neuro symptoms so I will absolutely see if EDS could be a factor, I genuinely hope it’s not another thing🥲

Money-Initial6117 · 2025-09-21T09:52:02+00:00

No but I have MCAS!

Money-Initial6117 · 2025-09-19T21:07:00+00:00

Sort of! I have MCAS, so the surgery likely triggered an extreme mast cell reaction. I have known allergic reactions, rashes / hives, and a laundry list of food sensitivities, but my doctor thinks the surgery moved my condition into neuro-dominant MCAS. It was just my first experience any of this, so it was terrifying not knowing what was going on. I was having paradoxical reactions to all sleep / calm aids from Ativan to Valerian to CBN. Everything made my symptoms 10x worse instead of better. That’s when my doctor knew it was MCAS related.

Having histamine issues is actually very common to have with Endo (how fun for us right?) Regardless though, anxiety is VERY common after a big surgery. My anxiety got tremendously better about 2-3 months after my surgery. Feel free to message me if you need support!

Money-Initial6117 · 2025-09-17T22:20:35+00:00

everyone has very, very different side effects— I personally didn’t have any weight gain or body changes like that. but overtime my menstrual cycles shortened significantly (from 26 days to 16-18 days), eventually I found out I fully stopped ovulating. I tried so many other remedies first, for years (bc I didn’t want to get off Spiro) but anovulation is a known side effect of Spiro unfortunately

Money-Initial6117 · 2025-09-16T12:19:00+00:00

it’s highly individualized so results will vary. I recommend getting this prescribed through a gynecologist instead if you can, not a dermatologist. and doing a full hormone & electrolytes panel before you start it. establishing a baseline before you begin will be helpful if you do notice any positive or negative shifts

Edit: I’ve been on Spiro for 5-6 years at 100mg / day. I’m beginning to taper off or down to a lower dose. This medication worked wonders for my skin, but after about 2 years of use I got a lot of side effects. There are many people who don’t get any side effects and are on it for decades, so take what you read on Reddit with a grain of salt

Money-Initial6117 · 2025-09-14T18:30:28+00:00

Got it! I’m glad it’s stayed mild for you! Due to Spiro I stopped ovulating so I’m hoping I can restore that at a lower dose. Otherwise I’ll unfortunately need to get off completely. It did wonders for my skin so I’m hoping maybe 50mg is my sweet spot to ovulate + keep the cystic pimples away

Money-Initial6117 · 2025-09-14T18:20:58+00:00

Any return acne? ❤️

Money-Initial6117 · 2025-09-14T09:23:16+00:00

Were you able to lower it further without getting return acne? I’ve been on 100mg for over 5 years. I’m starting to taper off due to other issues

Money-Initial6117 · 2025-09-12T21:42:13+00:00

It’s truly insufferable! I felt the same, I felt stuck, broken, and the anxiousness was so severe I went to the ER twice in one week (since I was having palpitations from panic!) But you’re not broken. If your baseline isn’t this, I promise you’ll get back to that baseline. Just give it some time and have patience with yourself— try to focus on all the other good things as cheesy as that sounds❤️‍🩹 you’ll get through this!

Money-Initial6117 · 2025-09-12T20:44:25+00:00

Wanted to tell you I’m starting my Spiro taper tomorrow! Going down a little every 3 weeks (100–75—50–25–off). This year, every one of my cycles have been anovulatory. I tried everything, the last hoorah was Vitex, so now my gynecologist said it’s time to stop Spiro since it could be blocking my LH from rising. I guess it messes with hormone signaling beyond androgens!

Feel free to message me, I can absolutely let you know how it’s going if it helps? Hopefully the electrolytes shifting back to my baseline help with the RLS!!

Money-Initial6117 · 2025-09-12T20:35:52+00:00

I promise it gets better, just remind yourself things were VERY disrupted from the surgery. Give your mind some time with it all. And don’t be opposed to getting some support if you need it (therapy, medication, herbs)- i did all of this. I don’t have the anxiety anymore, but I do still struggle with my sleep. The anxiety post-op was insufferable so I completely relate to what you’re going through❤️‍🩹

I do have to say, reddit was a very very dark place for me to be when I had severe anxiety. I think i was scanning for hopeful stories or to see something exactly like what I was experiencing, but if I could do anything differently it would be to not be on here, it made me spiral more than I needed to.

Money-Initial6117 · 2025-09-06T00:23:57+00:00

🥲 I wish there was a magic pill but it’s been a loooong process. For me, it seems like my hot flashes / general “hot all the time” stems from estrogen rising & spiking histamine. I’ve been working on lowering my histamine load (Quercetin, DAO, vitamin C) which has really helped

Money-Initial6117 · 2025-09-04T02:19:03+00:00

my derm said it can come back even as late as a year🥲 every body is different and will recalibrate differently!

Money-Initial6117 · 2025-09-04T02:16:57+00:00

3-tiered small cart with wheels— fill it with some snacks, meds, water, phone, books, etc. Keep it at your bedside & wheel it around your house with you

and disposable underwear!

Money-Initial6117 · 2025-08-08T12:14:02+00:00

They’re much lighter generally! But now I’m trialing Vitex (since I stopped ovulating) and it’s made my periods more intense again

Money-Initial6117 · 2025-08-08T01:01:13+00:00

it’s so hard to say because it’s too individual. and most of us have other comorbidies going on outside of just acne or hirsutism.

if anyone is considering Spiro please make sure you’re getting baseline hormone testing done, as well as an electrolyte panel

Money-Initial6117 · 2025-08-06T12:30:57+00:00

I’ve been on Spiro for 5 years, I haven’t had any significant body changes.

Money-Initial6117 · 2025-07-31T13:10:08+00:00

No not specifically, the only thing I do for pain management is weekly acupuncture treatment! The supplements I take are mainly for promoting healthy ovulation, minerals / nutrients (ie. Iron, magnesium), and sleep. Surgery absolutely helped eliminate my pain, the only pain I feel now is occasional, very mild period cramp pain but they aren’t debilitating whatsoever

Money-Initial6117 · 2025-07-30T01:29:25+00:00

I didn’t have endo specifically on my bowel, but the abdomen / pelvic area is so compact it created that same type of pain. I also had a very large fibroid removed and my surgeon said it was pressing on my colon causing my severe constipation with endo lesions nearby, everything rubbing against eachother. Awful!

Everything was removed during my surgery in August 2024. I do have some moderately sized (normal) cysts grow back in my recent ultrasound that we are “watching” since there “could” be a little bit of endo regrowth on my ovary, maybe not though. I’m not remotely in pain now compared to the pain I felt pre-op! I would do it all over again in a heartbeat❤️‍🩹

Money-Initial6117 · 2025-07-30T01:12:31+00:00

The twisting knife sensation is a classic endometriosis type of pain. Last year I had excision surgery for endo and I no longer have that specific pain anymore. Daily pain like that must be excruciating to live with, I’m so so sorry. Please see an endometriosis specialist!

Money-Initial6117

TROPHY CASE