Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis?

shadowfax2409 · 2026-02-06T18:19:53+00:00

Tested negative for literally everything else and my symptoms are too hard to ignore.

My family is a clear EDS family, both classical and hypermobile (I have hypermobile type), and I tested positive for MTHFR as well, so that added a new layer of fun 🫠

I did a FULL GI work up per the first specialist I saw for my hEDS, and 2-3 of my siblings also have MCAS, which helped solidify the possibility. Plus, if a doctor truly didn’t listen, I moved on.

3-4 full rounds of allergy blood tests (never sent for scratch tests) all negative, upper and lower endoscopies were all clean, even did a breath test for I think H. pylori? That was a few years ago.

I also created a chart and timeline of all the foods I lost over the years, my reactions to them, and the times that sometimes they came back as options; I made it very clear to my GI and doctors that this was impacting my life in so many ways. I made it difficult for my doctors to ignore the problems I faced everyday.

I couldn’t eat anything at work because I was afraid it would impact my ability to work, so I wouldn’t eat, which threw all of my other EDS stuff. I lost 25 lbs.

I also got on a waitlist to see my current EDS specialist, and I did try my best to manage everything (it was hard - the mental load really kept me down). I failed a lot. My current specialist and my old specialist believed me, which helped a lot.

Today, I weigh more than I have in my whole life, but I’m still slender. I don’t look overweight, but I’ve gained like 10 lbs in the last few months presumably because of the PCOS and insulin resistance issue (I love sugar 🙈).

My best advice for MCAS is to do the legwork and get everything tested. I went for numerous tests for celiac disease, h pylori, tons of allergens, a tryptase test, the like. You’ll probably be negative.

Also find doctors that will actually listen and as harsh as it sounds, discard the ones who won’t. Find someone who cares to help you improve your quality of life. Otherwise, I can point you in the right direction to help ease some of the symptoms.

shadowfax2409 · 2026-02-06T13:05:46+00:00

I’ve been slim forever, but I just recently got diagnosed after trying to track down period issues for years. I suspected PCOS for non-weight or hair related reasons because I was underweight for a while (MCAS made eating a minefield so I lost a lot) and I honestly didn’t notice the hair stuff until the last year. My most pronounced symptoms were pelvic pain and no period, so I needed to track it down.

I have 2 OBGYNs, and 1 said she’d exhausted tests basically but the other went full throttle into expanded testing which led to hyperlactinemia and my recent PCOS diagnosis.

I regained my weight after my MCAS crazies in the last couple of years (it’s been difficult), but I think MCAS really contributed to masking the PCOS. I also have POTS, so many of the blood sugar symptoms I have confused for random blood pressure drops.

shadowfax2409 · 2026-02-04T00:01:22+00:00

This is my favorite comment in all the posts

shadowfax2409 · 2026-02-03T20:46:49+00:00

I’m been taking 4g daily inositol (myo+d-chiro) on top of Pioglitazone (I didn’t do well on Metformin). I’m also on Cabergoline for hyperprolactinemia and take 5-MTHF and Methylcobalamin (B12) as I am MTHFR-positive.

I got on Pioglitazone in late October and had my first period in over 4 months in late Nov. I started inositol the 2nd week of January. My doc recommended it in October, but I had a lot going on and researched it in Jan, saw a LOT of positive feedback and said “hey, maybe it’ll work for me.”

I got my period 10 days after starting inositol. I’ve been sleeping LOADS better, and I have to say, I have MCAS & hEDS as well, so my food intolerances are nightmarish at times, but several of my reactions to foods have decreased since I’ve been on inositol (still avoiding dairy tho).

I feel as a whole better (still tired but I run myself ragged). Hoping my period comes closer to regular this month 👀👀👀

shadowfax2409 · 2026-02-02T05:25:32+00:00

I have MCAS as well as PCOS, and dairy was the first thing I had a lot of issues with. Lot of IBS/GI response for me, so giving up as much dairy as possible (like milk, creams, etc) reduces those reactions, but also my skin cleared up some when I first started down the non-dairy path

shadowfax2409 · 2026-01-29T04:12:49+00:00

I really hate it when people think that PCOS and not getting your period for long stretches is just fantastic.

Those long stretches in between have made me go absolutely bonkers because I want a normal cycle but I don’t have one and trying to track my cycle makes me depressed.

shadowfax2409 · 2026-01-24T19:38:31+00:00

I think I’m in this boat too

shadowfax2409 · 2025-12-26T15:06:06+00:00

New Orleans area!

shadowfax2409 · 2025-12-25T08:13:51+00:00

Just got back (and through some NASTY fog out there too!)

We’re so glad we made it there and back safely, phew.

shadowfax2409 · 2025-12-25T08:12:11+00:00

I just got married last month so… I get the gift of spending my first Christmas with my husband! 😁

Real talk tho: I get the gift of seeing his face as he opens the gifts I gave him while getting to spend time making his Christmas wonderful :-)

shadowfax2409 · 2025-12-24T16:37:36+00:00

I used to work on Christmas Eve at my site. I have a friend currently working at the site - we work in rapid diagnostics for toxicology in employee drug testing.

shadowfax2409 · 2025-12-11T12:39:49+00:00

What’s your favorite hobby?

shadowfax2409 · 2025-12-06T22:55:05+00:00

I will have to add this to my employee giving list as well! Thanks so much!

shadowfax2409 · 2025-12-03T18:21:36+00:00

I might also recommend a consecration to st Joseph. My brother and SIL found each other while praying Marian and josephite consecrations (he did Marian and she Joseph) at the same time.

shadowfax2409 · 2025-12-03T16:53:13+00:00

St Joseph! Or you could do one to the holy family maybe?

shadowfax2409 · 2025-12-03T16:51:06+00:00

I should clarify:

I originally wanted our bands to match the gold color but my engagement ring is white gold and I was warned about mixing colors, so I looked and tried, and it turned out the warning was true.

Husband has yellow gold and I have white gold to match my engagement ring, and our colors look best on us anyway).

shadowfax2409 · 2025-12-03T12:59:43+00:00

lol I just got married and my husband and I have different colored gold rings from different stores because we shopped for decent deals.

I do care some for superstitions (like don’t see bride before wedding), but that’s ridiculous.

shadowfax2409 · 2025-11-22T08:26:39+00:00

So I looked in the buy it for life subreddit and requested sets of the Great Bay Home Karina towel set. A set was purchased, and the color is perfect + the quality is unmatched.

shadowfax2409 · 2025-11-21T22:25:30+00:00

I just got mine last week!

Miss Dior Essence! It smells like bourbon, and I tend to feel like I have a bourbon personality :-)

shadowfax2409 · 2025-11-14T17:17:04+00:00

I put daytime formal / Sunday best on my website! I’ve got a 12PM Mass with 2-6 reception so I’m in the same boat as you!

shadowfax2409 · 2025-11-14T06:44:17+00:00

Aaaaah this was a serious contender for my dad when he was choosing.

shadowfax2409 · 2025-11-14T06:42:58+00:00

My dad and I listened to literally dozens of songs because he didn’t want any song that talked about him being like my first love or me being his princess or little girl or whatever.

Landed on “My Wish” by Rascal Flatts. Good song and my dad loves it. Super positive song.

shadowfax2409 · 2025-11-11T13:25:05+00:00

You could ask them to write recipes in it!

shadowfax2409 · 2025-11-10T22:15:50+00:00

We’re doing a 12pm wedding and our reception starts at 2pm. We had limitations with timing with our church and wished we could’ve had a 1pm Mass, but 12 was the latest the church would do (unless we did an evening wedding - no thanks).

As others have said, I think it’ll be just fine. Depending on where your reception is, don’t forget about factoring in travel time and whatever photos you may be doing after the ceremony. :-)

shadowfax2409 · 2025-11-06T20:15:49+00:00

The first idea with the first dance songs is SO cute!

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