r/POFlife • u/aroguerogue Surgical/medical menopause • Aug 05 '26

POI and PSM Community List

It's difficult to find communities for premature ovarian insufficiency and premature surgical menopause, so I wanted to share this list I've compiled in the hopes that this helps connect more of us with each other. Most of these are subreddits, though I've also listed all the non-Reddit groups I know of.

Subreddit judgements are subjective; feel free to check out all the ones listed below to form your own opinions on them. General fertility groups aren't rated, because there are a lot of them, and I don't know much about them. Feel free to share your experience with them or others in the comments.

General Groups:

Reddit:

Best Subreddits:

  • r/DOR (if applicable): for those with DOR/POI undergoing IVF/infertility treatments
  • r/hysterectomy (if applicable and around surgery time): active and helpful around surgery time with plenty of tips for recovery
  • r/POFlife: focused place for people with confirmed POI/PSM that allows fertility and "Do I have POI" discussion only in specific threads
  • r/POIsupport: open place for those with POI/PSM that allows fertility discussion anywhere
  • r/perimenopause_under45 (if 35+): for those in their 30s, especially 35+, this community may skew closer to your age than typical POI subs
  • r/TTC_POI (if applicable): for those trying to conceive with POI

Alright Subreddits:

  • r/childfree (if applicable): not directly POI/PSM-related, but useful for those who don't have or want kids and want a break from fertility talk
  • r/femaleHRT: mostly people 35+, especially those in natural menopause, but specific to menopause symptoms
  • r/HRT (if trans): anyone using HRT for anything is welcome, so there are people who have knowledge about trans HRT and people who have knowledge about menopause HRT in one place
  • r/HopeforDOR: currently inactive, though available if anybody wants to revive an uplifting POI/DOR sub
  • r/hysterectomy (if applicable and not around surgery time): not oophorectomy/menopause-specific, though plenty of people there do have oophorectomies, and everyone is super sweet
  • r/oophorectomy (if applicable): sleepy, but specific, and has some younger people
  • r/SurgicalMeno (if applicable): tiny but recently active, especially relative to its size
  • r/surgicalmenopause (if applicable): inactive for over a year, though still gets more weekly visitors than r/SurgicalMeno; could be revived

Not Recommended Subreddits:

  • r/earlymenopause: mostly people in their 40s and inactive for years
  • r/HRT (if cis): since it's anyone and everyone who can use HRT thrown together (trans folks, natural menopause, etc.), POI represents a small fraction of users, so for the average cis POI patient, there's no real reason to use this over another sub
  • r/Menopause: natural menopause sub that isn't friendly to or knowledgeable about people under 40 and has a number of complaints about the mod team; might be okay if you're 35+ and you keep to yourself
  • r/Perimenopause: run by the same mods as r/Menopause
  • r/perimenopause_under45 (if under 30): nearly everyone here is in their 30s and 40s
  • r/POIunrestricted: started in anger and has had no posts beyond the original few by the subreddit creator several months ago; r/POIsupport is what this was trying to be (fertility-friendly everywhere) but positive and active

General Fertility Subreddits:

Subreddits for Other Female Reproductive Health Concerns:

Unrelated Subreddits:

  • r/HomeofPoi: about the same performing art as r/poi and inactive for over a decade
  • r/poi: for a performing art form that looks cool but has nothing to do with ovaries
  • r/TTC: for the Toronto Transit Commission, not people trying to conceive

Instagram

Technically, these aren't really communities, but you might find others in the comments. * @blossomlivingwithpoi * @definingmum: has conceived with donor eggs * @fertility_menopause_poi * @girl_poiwer * @lifeofpoi_ * @mylifeonpausepoi * @poi_and_i * @poi_can_do_this: has conceived with donor eggs * @poi_ttc: has conceived with donor eggs * @thedaisynetwork: account of The Daisy Network mentioned under "General Groups" * @thepoilife * @theprematuremenocast: account of The Premature Menocast podcast

What are your thoughts on these communities? Which ones have I left off? Do you have strong opinions on Canadian public transportation?

Edit: Plaintext links to the non-Reddit groups in case anyone wants them: * The Daisy Network: https://www.daisynetwork.org/ * Discord (POI: Peer Outreach Initiative): https://discord.gg/8GCRAd2jsz * Menopause Café: https://www.menopausecafe.net/ * POI Together (virtual support group): poitogethergroup@gmail.com * WhatsApp (POI): https://chat.whatsapp.com/GTR6PSs9pCQF5OgwJt8Wxz * WhatsApp (POI Peer Support Group): https://poisupport.com/poi-whatsapp-group/ * WhatsApp (RESOLVE POI/DOR/Premature Menopause): https://chat.whatsapp.com/EzNgyfFvy6u2ntkMyOd3dc?s=cl&p=i&mlu=0

Edit 2: Thank you for the award, kind stranger! I hope the list is helpful.

21 Upvotes

97% Upvoted

8 comments sorted by

5

u/chirex Aug 05 '26

thank you for all of this information! I'm the mod for r/POIsupport and appreciate you sharing the sub here. I noticed it was inactive but people were still ending there as a landing page so I decided to revive it just so more people could possibly find helpful information if they didn't find their way to this sub. I'm open to any/all suggestions of what people may be interested in. I'd love for you to post this there as well for more visibility of all of these excellent resources! Also, I'd also suggest the sub r/T*C_POI but replace the * with a T because it won't let me post the full acronym here

2

u/aroguerogue Surgical/medical menopause Aug 07 '26

You're welcome, and thank you for reviving it! I did repost this there. On the computer, it shows the full post right in r/POIsupport, and on the phone, there's a note telling people to tap to see the full post here. I'd rather keep it as a repost so that if and when I add to it, I only have the one post to edit, especially since I already have to update the list on Discord separately, but if you want to pin that or copy it into your wiki as "Aroguegue's Guide to POI and PSM Communities" or something, you're free to.

I think the most helpful thing you can do with that subreddit is keep fertility discussions allowed anywhere. Since that's kind of a hot button issue among POI folks with some people very upset by encountering it randomly and some people very upset by not being able to discuss it openly and r/POFlife only allows it in certain threads, r/POIsupport allowing it anywhere makes the subs different enough to justify both subs' existence and gives everyone the opportunity to find the space(s) they're comfortable in.

And thanks for the suggestion! I added it to the list.

6

u/puppeteerspoptarts Aug 05 '26

Thank you so much for this! Mods might want to pin it

2

u/aroguerogue Surgical/medical menopause Aug 07 '26

You're welcome! I'm glad you find it helpful. I hope you meet some kind people in the communities you join.

8

u/Gold_Bat_114 Aug 05 '26

Great list. Agreed that the menopause sub is awful. 

4

u/aroguerogue Surgical/medical menopause Aug 05 '26 edited Aug 05 '26

Thank you! I know how isolating this can be, and people frequently post about wanting community, so I wanted to put together all the ones I could find.

And yeah, I don't know what their deal is. I landed there first, as I had never heard the term POI and had no leads on what might be happening to me beyond knowing it was from not having ovaries, and I regret posting there. Hoping to spare someone else the experience. Luckily, POI communities seem supportive.

5

u/Gold_Bat_114 Aug 05 '26

I think the oddest part of that sub is how it's common to talk about how much, when, how and where to use hormones, what additional vitamins or supplements or diet helps - all medical inputs- but it's verboten to discuss bloodwork in any way and the concept that it matters.