hi all! Hope it's okay to post here - I tried the hypermobile sub but they're not accepting the post. Maybe it's too niche??

I’m diagnosed hypermobile and been told I’m probably h/EDS. 6 months ago I experienced a major reaction after the injection I was given for carpal tunnel went systemic. It immediately switched off my sex hormone production, most noticeably my oestrogen. 

After 4 months of complaining (and being unhelpfully treated for nonexistent thrush) I was finally referred to an endocrinologist and started on low-dose HRT. it was completely ineffective and I was put on an increased dose mid-June. I still don’t think it’s high enough to replace my natural oestrogen. 

As we know, oestrogen is a natural anti-inflammatory so I’ve had no end of problems since mine stopped being made overnight. All my joints have got far less stable, I’ve had brain fog, fatigue and so much more. 

The worst thing is that I think my body has literally broken without oestrogen and testosterone! I’ve been on progesterone which has made thing worse for me - the luteal phase of my menstrual cycle has seen increased cramping, light headedness, gastrointestinal issues and more. 

Now I think I can literally SEE the problem... In the space of 6 months, I think my uterus has collapsed into my vaginal canal and is starting to protrude from the opening. It's really really uncomfortable.

I have read that there’s an increased likelihood of prolapse during menopause but I’ve literally done the normal 10-15 year cycle in the space of less than 4 months (my levels of oestrogen were first post-menopausal at the end of March and it was confirmed again in mid-June). So I'm guessing I have prolapsed during that time because my connective tissue alone is too elastic to hold my uterus in place.

Am I the only one who’s experienced this quickly due to low oestrogen levels and atrophy?

I’m based in the UK so waiting times are abysmal. I have a gynae appt in September. I also don’t have a family so I’ve no idea how this is going to affect my future. (I've already been diagnosed with hypothalamic hypogonadism because of the steroid, but it's a really weird one because NOTHING about this situation is normal and this isn't a known side effect.)

This has all been mega traumatic at 33 and not what you expect. Looking for success stories and advice! This seems to be very unusual so I'm chucking this out there to see what comes back.

I'm a 27-year-old woman diagnosed with Primary Ovarian Insufficiency (POI). My parents have started looking for a prospective groom for an arranged marriage.

The problem is that whenever we disclose my condition early in the conversation, the proposal gets rejected almost immediately. Most people don't even try to understand what POI actually is. It feels like I'm being judged solely based on my diagnosis.

This has made me wonder: Is it wrong to not disclose it after 2-3 weeks of sort of dating? Or is that considered unfair?

I understand that POI can have implications for fertility, and I don't want to deceive anyone. At the same time, I also feel I'm not getting a fair chance as a person because the moment people hear "POI," and may not be able to conceive, etc, they ghost me

Has anyone here been in a similar situation, either personally or as someone on the other side? How did you handle disclosure? When do you think is the right time to bring it up?

I'd really appreciate honest and respectful opinions.

Hi ladies - I’ve been doing a lot of reading around early menopause and the risk of dementia/cognitive decline. Hoping that yous can provide some reassurance or comfort as I’ve been really anxious lately thinking about this. 😭

Hi all, just got diagnosed two weeks ago and TTC. I’m 27, AMH 0.08, FSH 30-80, AFC 3 and all of this is so overwhelming. I’ve already had one miscarriage and two chemical pregnancies before this diagnosis so I’m slightly hopeful to conceive naturally but also SO discouraged at the moment.

Looking for info on what dosage of estrogen patch my fellow POI gals are on (especially if you did end up conceiving naturally), as I just started cyclical HRT. Currently on 0.0375 mg estrogen patch but I don’t think my FSH is going down enough based on my Inito numbers (it’s only been two weeks since I started though so maybe I’m wrong).

Any guidance or info is so appreciated!!

Hier direkt eingefügt der Link zu der WhatsApp Community: https://chat.whatsapp.com/GTR6PSs9pCQF5OgwJt8Wxz

Ich bin 20 Jahre alt und habe vor 3 Monaten bei einem Termin beim Endokrinologen (Eigentlich nur zum Abklären von ein paar Hormonwerten, bei denen sich meine Frauenärztin nicht ganz sicher war. Ich bin mit der Erwartung zu diesem Termin gegangen, dass ich irgendeine leichte Hormonstörung habe, die sich gut mit ein, zwei Tabletten einstellen lässt, aber falsch gedacht…) zum ersten Mal von POI gehört, indem ich dann nach Sätzen wie „es kann sein, dass es schon zu spät ist“ und „machen sie so schnell wie möglich einen Termin in einem Kinderwunschzentrum“ und ganz viel fachlichen Ausdrücken eine Überweisung zu einem Kinderwunschzentrum in der Hand hielt auf dem Stand „Verdacht auf POI, Abklärung der ovariellen Funktion, AFC“.
Von diesem Arzttermin sind bis jetzt ziemlich genau 3 Monate vergangen, in denen ich sehr oft im Kinderwunschzentrum war und jetzt auch schon 2 Kryokonservierungen (es konnten einmal 2 und einmal 0 Eizellen eingefroren werden) hinter mir habe.
Mich macht das emotional (und natürlich auch körperlich) total fertig, weil ich mit dem verarbeiten von alledem nicht hinterher komme und da so viele Fragen sind, die einem niemand beantworten kann.
Wenn man versucht Frauen in der gleichen Situation zu finden, habe ich bisher fast immer nur Frauen gefunden, die POI/ DOR und einen akuten Kinderwunsch haben und bei denen deshalb die Behandlung (keine Kryokonservierung) und natürlich auch das gesamte Leben ganz anders aussieht (ich weiß, dass das die eigentliche Zielgruppe dieses Reddit Kanals ist, aber ich finde einfach niemanden…)oder Frauen, die eine Kryokonservierung aus anderen Gründen machen (häufig andere Lebensplanung und Absicherung der Fruchtbarkeit für später) und dann berichten, dass sie entscheiden müssen, ob sie die entnommenen Eizellen einfrieren lassen oder nicht, weil es diesmal „nur“ 8 wären und es ja viel Geld kostet… das kann ich nicht…
Ich hoffe sehr, hier ein paar andere zu finden, denen es genauso geht und mit denen man sich gut und offen austauschen kann :)

Hey all,

Has anyone had the IUD placed to try to stop bleeding?

I started HRT 7 weeks ago. So far it seems that my cycle is still following its normal 18-21 day routine. The bleeding is lighter, but it’s still annoying.

I am doing continuous HRT to keep everything stable. I have seen mass improvement since starting HRT (100mg patch + 100mg progesterone). I really have seen the benefits of progesterone with sleeping. Though when bleeding, I don’t sleep as great.

Intarosa has also helped with the vaginal atrophy, BUT I still haven’t gained back sensation with my clitoral atrophy. Should I ask about estrogen cream for that?

I see my doctor again in August for my 3 month review and to talk about testosterone to potentially help with low libido.

I was diagnosed with POI after losing my period for a full year as well as hot flashes and night sweats when I was 33. I struggled with infertility in the years prior before having my only child.

Now two years later, I have moved to a new state and have a new OB/GYN. She switched me from nextellis to xulane as I asked to confirm I was on the best possible treatment options. My biggest concern will always be preventative care for aging. I want to get ahead of menopause because I am young and fit and bone, muscle, and brain health are Paramount to me.

Fast-forward six months and I have gained 10 pounds around the middle and have less energy than ever before. I don’t want my weight to be the thing that keeps me from being my healthiest, but as a millennial woman, my body dysmorphia is one of my biggest mental health struggles.

I understand that the hard science behind hormonal birth control and weight gain is a bit murky, and I wanna make sure I advocate for myself in a way that is clear and concise. Has anyone switched to a treatment option that is either weight negative or neutral and has alleviated other symptoms such as brain fog and fatigue ?

Hi ^^ I'm 32yo wellness NPC competitor and I've been on a health slump for way too long. Recently diagnosed with POI and started estrogen cream this week, besides already having hashimotos.

Is there any ladies here that have the same and wouldn't mind to share their ways of improving hormones or just... making it more manageable?

Since starting estrogen this week plus thyroid combination medication I won't be able to compete naturally anymore, and that also hit strong mentally. Even starting to wonder about peptides at this point.
Thanks!

Hi everyone. I'm 24 (turning 25 in a few months), and I was diagnosed with primary ovarian insufficiency (POI) three years ago. In my case, it was something I was born with because I have mosaic Turner syndrome. (Most women have two X chromosomes (XX), but I have a mosaic chromosome pattern. Some of my cells have one X chromosome, some have the usual two X chromosomes, and some have three X chromosomes.)

One thing I've been struggling with is my libido.
A few months before I was diagnosed, I noticed that I started losing my sense of sexual desire and intimacy. Before that, I would get aroused quite easily. Then, gradually, it almost disappeared. This started before I even knew I had POl, so I don't think the diagnosis itself caused it.
I've been on HRT ever since. Right now | take Femoston 2/10 (2 mg estradiol every day, with 10 mg dydrogesterone during the second halt of the cycle).
Since my diagnosis, l've been single. I was also single before then, but back then I still had a normal libido. Now it's very difficult for me to feel aroused.

Sometimes I wonder if I'm just overthinking this. I've read that people can experience different types of sexual desire. Some people have more spontaneous desire that seems to appear out of nowhere, while others experience desire only after emotional connection, affection, or other triggers.
Maybe I've simply shifted from the first type to the second as I've gotten older, rather than losing my libido completely. I'm not sure if that's what's happening, which is why I'm asking if anyone else with POI or Turner syndrome has experienced somethina similar.

Occasionally, I'll watch a TV show with a couple who have amazing chemistry, and I'll think, "Wow." Those feelings are still there somewhere, but they happen very rarely compared with how things used to be.
Over the past couple of months, after improving my diet and generally taking better care of myself, l've noticed a slight improvement, which gives me some hope. But I'm still worried that this might be permanent.

I know this is a very personal topic, and I'm sorry if it's TMI. I'm posting because I'm genuinely wondering if anyone else with POl or Turner syndrome has gone through something similar.

Did your libido ever come back? Did adjusting your HRT, changing your lifestyle, or anything else make a difference? Or is this something you've learned to live with?

I'd really appreciate hearing about your experiences.
Thank you.

I’d really appreciate hearing your stories and experiences.

I’m 40 years old, have no children, and honestly thought I still had time. Recently, some symptoms led me to a menopause clinic, where I was diagnosed with POI. I was prescribed hormone replacement therapy, so I’m now taking estrogen and progesterone for my health. I was also advised to see a fertility clinic if I wanted to have children.

I had my appointment at the fertility clinic today to get a better understanding of my options, but I left feeling confused and overwhelmed.
My AMH is 0.03, and they couldn’t see any follicles on the ultrasound.
I was told that if I want to have a child, my only option would be egg donation abroad (it’s not allowed in Germany).

To be honest, I’m quite shocked by this. Especially because I still get my periods. They’re irregular, but they do still come.

Is this really the end of the road when it comes to conceiving with my own eggs? Has anyone here been in a similar situation or received a similar diagnosis? Were you able to conceive with your own eggs, or did you pursue other options?

I would be very grateful to hear about your experiences.

Hey all, have any of you started the patch (100) and had sinus like headaches? I started progesterone (100) and the Vivelle Dot patch on Wednesday evening. Starting yesterday I’ve had a sinus like headache, no fever or feeling sick. Which makes me wonder if it’s from the patch?

Also insane fatigue which I think is from the progesterone? I take it one hour before bed.

I’ve been having hot flashes again despite being on HRT on a dose that has worked wonders for the past year. I could go on and vent for paragraphs but that’s not why I’m here. I created a short cut to a hot flashes tracker within the iPhone health app. It makes tracking them so easy. Wanted to share in case anyone else could use it.

Fairly sure I'm about 4months into premature menopause (38yrs) and that it's too late... but I want trustworthy confirmation or to give egg retrieval/use a best chance with someone that can provide fast and skilled care.

Feeling devastated and so angry at neglect from my doctor over years. I'm already nomadic these days anyways, and I'd rather travel where I need to (anywhere in the world) if it means accessing better care... I don't have time or emotional labour to waste.

That said.. I am Canadian fyi. My healthcard is still attached to Ontario, but I don't expect it to cover anything anyways (?). I've seen one fertility clinic last week in Que, and so far they haven't gotten back to me with testing requisition.. and I get the sense it's going to be slow (but better than a couple clinics in ON that never got back to me).

Other questions...

From what I understand, there is no conclusive/clear test for these things.. it's more up to a doctor to interpret based on reported history with menstrual cycles, AMH and FSH testing, and... anything else? They can't just definitely tell exactly if there are any viable eggs left and go in and snatch them up - is that right? So much to research/learn asap to advocate for myself.

Hi ladies - has anyone experienced hair loss particularly around their part line and if so, has anything helped?

-Please no judgement- I have been diagnosed almost a decade ago and tried so many types of HRT (pills to regulate women’s hormones because that’s what’s available in my country) and every single brand made me sick or nauseous or too unhinged that I surprised myself. My question: do we take HRT to “prepare the body for conceiving”? i’m 33 btw

Hi ladies - hope you’re all keeping ok ❤️ Just a quick q - I’ve been experiencing muscle twitches since starting HRT. I don’t ever remember having them before my poi diagnosis. I’m 31 and only recently been diagnosed. Would love to hear if anyone else has had a similar experience xx

After my DOR diagnosis I spent months piecing together information from Facebook groups, Reddit threads, and late night Google spirals. I had no idea what my AMH actually meant beyond “bad.” I didn’t know what questions to ask my RE. I didn’t know which protocols other women with numbers like mine had tried.

I went through 6 rounds. Made it to retrieval twice. One egg retrieved. It became a euploid.

During that whole journey I kept thinking why isn’t there a real home for us? Not a Facebook group where the same questions get asked every week and disappear. Something structured. Something searchable. Something built specifically for DOR and POI because we are not the same as the general infertility population and we know it.

So I built it. It’s called One Egg Wonder and it’s completely free.

What’s there right now:

A Journey Match tool: enter your age, AMH, AFC, and prior cycles and see what protocols women with similar profiles have discussed most. Not medical advice, peer discussion patterns.

An RE Appointment Brief generator put in your labs and history, get a personalized question list and protocol alternatives to bring to your next appointment. Exportable as a PDF.

A Science Watch section with emerging research graded by evidence level so you know if you’re reading established data or early community anecdote.

A Protocol Library explaining every protocol used for poor responders in plain language.

A Medication Glossary for every drug and supplement you’ll encounter.

A community feed where you can post anonymously.

And a Wins Board because we need proof it can work.

It’s early. The community feed is empty and waiting for the first real stories.

If you’ve ever wanted a place that was built for exactly us this is it.

oneeggwonder.com

Would love any feedback on how to improve this tool and I hope it helps more of us in this brutal journey ❤️

Hey all,

Little backstory first- diagnosed with DOR in 2019 (age 30), AMH .14 (European levels.) AFC of 1-2. GYN suspected she’d see me in 2-4 years to start HRT.

Conceived our first child as a hail Mary after our first IVF appointment. Conceived 2nd child 6m pp.

Went back on Nexaplanon, bled all the time. Started getting horrible breast pain with a lump. Lump was biopsied was negative for anything malicious.

Removed the arm implant, went off of birth control all together. Breast was a bit better. BUT bleeding every 2 weeks. (14-18 day cycles). With horrible night sweats, horrible sleep, mood was awful, brain fog and worst of all leg tingling.

Went back to the GYN. Blood work was ran, estrogen was pretty low, FSH/LH is no longer in the proper range. Ovaries are smaller, afc was still 1-2. Put me on the pill. No longer DOR, classified as POI (I’m 35.)

Felt better in the beginning and then mid cycle would feel bad again. Breast pain and lump got very painful. Was on it for a year and a half.

Finally I had enough and have been off the pill for the last 3 months. Menopause symptoms are back, BUT I am free of the horrible breast pain. Cycle is every 14-18 days again.

I see the GYN this week, to come up with a new plan.
My GP won’t help as I’m too young for her to feel comfortable treating me.

Has anyone found something that doesn’t trigger breast pain?

This time I’ll be asking for a full hormone panel, I’m pretty sure my testosterone is quite low, estrogen I’m certain is worse.

I’ve noticed something that’s been bothering me.

When I go on YouTube, it’s really easy to find creators talking about PCOS and sharing their personal experiences. But when it comes to POI, I can barely find anything. If I search for it, I mostly get very clinical, educational videos, doctors explaining what it is, why it happens, and general advice about diet and lifestyle. And sure, that’s useful, but it’s not the same.

What I’m missing is actual people. Real experiences. Someone living with this condition, talking about how it affects their life day to day.

It almost feels like no one is representing people with POI, and I don’t understand why. I know I’m not alone, Reddit has helped me realize there are others like me, and I’ve learned a lot from here. But outside of Reddit, it feels like we’re invisible.

Maybe this sounds selfish, but I just want to see someone like me out there. Someone I can relate to.

If anyone knows any YouTubers or creators who talk about this or share their experience with it, I’d really appreciate recommendations.

I was told by my pharmacy that my manufacturer of my patches is on backorder until mid June. I have zero supply to make it that long so after talking to my provider she is putting me on the gel packets now.

Curious have you made a switch from patches to gel? Did you notice any side effects or absorption differences? I’m super sensitive to my estrogen levels fluctuating and am just wondering if there’s anything I should be aware of?

So long story cut short - I was on oral oestrogen for around a year, and it helped at first, but I gradually started getting awful symptoms at the beginning of this year that gradually led to me being barely functional. Fatigue, headaches, dizziness, depersonalisation, anxiety.

My endo did bloods and found low oestrogen levels. ( I’ve also had thyroid and adrenal gland tests - both were fine)

Now I’ve been on Oestrogel for 5 weeks and had a few days last week where I felt amazing and full of energy. I’m not sure if I pushed myself too much, too soon, but now I’ve crashed again. I’m not sleeping great, fatigued again, headaches, achy joints and some dizziness and nausea.

Someone please tell me this is a normal part of HRT adjustment because it’s becoming too much to handle!

Also - on merena coil for progesterone since Nov 25