/r/POFlife

Photograph via snooOG

This is a community for anyone who for one reason or another is going through menopause early. We're here to be a safe and supportive place to talk about living with premature ovarian insufficiency (and surgical menopause). Other terms sometimes used for POI include primary ovarian failure, and diminished ovarian reserve before age 40. Please read our wiki before posting.

This is a community for members who for one reason or another have gone through menopause early. We're here to be a safe and supportive place to talk about living with POF (and surgical menopause).

We do allow discussion of everything from going through the diagnosis to IVF to life after IVF or without children.

/r/POFlife

3,319 Subscribers

2

Birth control or HRT

So I was recently diagnosed and gynecologist is telling me to go on birth control rather than Hrt. Should I listen to her or do what everyone else recommends such as HRT. I took her advice the first time and didn’t get a withdrawal bleed from the Birth control. She told me to see and endocrinologist/fertility specialist should I ask them to put me on HRT?

5 Comments
2024/11/02
00:05 UTC

1

Endometrial thickness

Has anyone else struggled with thickening of endometrium/endocervix. I’ve been having ongoing abnormal bleeding and several tests now have showed thickening of endometrial tissue. Curious if this has come up for others or not.

I’ve had 3 ultrasounds, 1 biopsy, and hysteroscopy/d&c this last year

1 Comment
2024/11/01
23:23 UTC

1

Advice needed on regimen

Hi ladies! 👋🏼

Could you please share your regimens and advice? I was diagnosed 2 years ago, am 35 now. Started on 1mg estradiol per day combined with 200mg progesterone for 10 days and then 7 days break. This seemed like a hassle, changed doctors and tried angeliq - it has been terrible: I have spotting, severe weight gain, acne,etc. so decided with the doctor to go back to gel and progesterone. The issue is, it seems to be a weird and low dose now. I was prescribed 0,5mg per day continuously and 100mg progesterone every other month for 14 days. Is that a reasonable regimen? Is taking progesterone every other month safe? Are the doses not too low suddenly? The doctor didn’t engage in a discussion with my concerns so my questions went unanswered, only agreed to a follow up in 3 months.

Thanks a lot!

7 Comments
2024/11/01
16:00 UTC

4

Monthly "Do I have POF/POI/DOR" thread

This is the place to post questions if you have not been diagnosed with POF/POI/DOR and are worried you may have it. Out of respect for our members who are learning to cope with this life changing diagnosis, we ask that you keep questions limited to this thread if you have not been formally diagnosed. Reassuring someone that they likely do not have this traumatizing diagnosis when you yourself do have it can be painful, we hope you understand. If you have had testing done that suggests you are somewhere on the ovarian failure spectrum (for example low AMH, high FSH) you are welcome to make a standalone post if needed or post here. You'll find our wiki here. Ovarian failure is a spectrum which can be considered "diminished ovarian reserve (DOR)" in the early stages and eventually progresses to premature ovarian failure (POF), aka primary ovarian insufficiency (POI).

If you are here looking for answers, Medline has a helpful basic rundown of the disease. Symptoms are often vague, nonspecific, and irregular periods are often one of the LAST symptoms to appear. Many other much more common conditions carry the same symptoms, for example PCOS and hypothyroidism. For this reason, you should see your PCP or gynecologist if you are worried.

If you are worried about your "ovarian age" or are having trouble finding a doctor to order the appropriate test, you can order one online from Modern Fertility (there are other sites that offer similar services).

If you are frustrated with your doctor and would like help finding one who is a better fit, read this post.

Thank you and welcome to our community, we hope your stay isn't long!

0 Comments
2024/11/01
05:00 UTC

2

Testosterone replacement POI

I just got my blood work results back and my s-testosterone levels just barely made it within the range of the reference interval at 0.5 nmol/L (reference interval 0.4-2.1 nmol/L). I'm experiencing symptoms that could be linked to low testosterone, but it could be linked to side effects after my cancer journey or it could be because I'm on antidepressants too.

I'm wondering, is there anyone here who have gotten testosterone replacement when on the lower spectrum of the reference interval? If so, how has that been for you?

Before my POI diagnosis, I suspect I actually had PCOS but never was really diagnosed and I guess thar isn't a thing now with POI.

2 Comments
2024/10/31
17:47 UTC

17

Sharing some hope

Possibly a bit TMI but I just wanted to share a positive outcome I've had in case it gives some hope to someone else going through something similar with POI.

I'm 34 and newly diagnosed. One of the symptoms I've found most distressing has been vaginal atrophy and resulting pain during intimacy. I've been using a local oestrogen cream for a couple of months and improvement was slow and barely noticible at first, but then the other day I was able to have sex with my partner without pain for the first time in months. I had pretty much made peace with the possibility that it might take many months of treatment to get this degree of improvement or that I might never get this much, so it was unexpected and such a huge relief. So if you're worried about something similar, hang in there and stick with the treatment, I hope your response is as good as mine :)

7 Comments
2024/10/30
10:08 UTC

2

Patch Vs Pellets

Hello all! I was diagnosed with POF at 40, but put off HRT until a breast lump I had was cleared. No family history of breast cancer, but I was too nervous about it to start HRT.

Anyway, my doctor has prescribed an estrogen patch and progesterone pill.

My naturopath has recommended HRT pellets instead. This path is a lot pricier as it’s not covered by insurance.

Any thoughts or experiences?

1 Comment
2024/10/29
02:23 UTC

5

Biweekly fertility/IVF discussion

Please keep discussion regarding active fertility treatment limited to this thread out of respect for members here who are not in this phase of their journey. You can also go to /r/poisupport, which is a POI/POF sub focused on fertility in POI. Mention of pregnancy & active IVF treatment outside this thread is against the rules. We also ask that avoid use of cutesy acronyms (baby dust, DH, etc).

9 Comments
2024/10/28
18:01 UTC

17

Rapidly aging? More wrinkles and looser skin

Has anyone noticed a difference in the way their skin looks after going into menopause ? I’m comparing pictures from literally one year ago and it looks like Ive aged overnight. When I smile my crows feet and cheek smile lines are extremely accentuated/deeper and I feel like my skin is overall looser. Not sure if it’s from stress, cancer therapy or rapid ovary failure/hormone depletion. It’s weird though bc I always thought I’d look young forever like my mom. Never knew hormones played this big of a role in the way we age. I’m 37. Ovaries failed at 34. Ive done everything minus surgery . just felt like venting. Thanks for listening, friends.

14 Comments
2024/10/27
01:49 UTC

1

HRT and bleeding

Back yet again with more questions! Since switching from regular progesterone to medroxyprogesterone the bleeding has been intense. In August the mexdroxyp withdrawal period was so bad I had to go to ER. I started bleeding before taking medroxyp this month, then started taking it because I was due and bled the whole way though. Now I've stopped the medroxyp and I'm cramping and bleeding badly. I just soaked through an overnight period diaper in about 2 hours. Any tips? It's not as bad as it was in August (that was scary clots) but still more than usual. Does this mean my estrogen patch and .5 mg oral estrogen is too much? With just the patch on my estrogen levels were only in the 30s pg/ml and we had to add oral too. I didn't really have heavy periods on regular progesterone pill so maybe it didn't clear out? Should I go have the thickness of my lining checked? This period also has a weird smell that's kinda rancid. Everything is so off and my NP is wonderful and collaborative but isn't an expert in this area. Thanks so much!

5 Comments
2024/10/27
00:18 UTC

8

Which hormone is responsible for libido?

I was diagnosed with POF at age 37 after I had symptoms for 3 years. Been on HRT (Estradot 50 and Prometrium) for 8 years now. I always felt my dosage was too low as I never felt any different since going on it. Constant fatigue, weight gain (20 lbs in 6 years), insomnia, vaginal dryness and absolutely zero libido. No physical desire at all during those years. My doctor never increased my dosage as we have lots of breast and ovarian cancer in the family (BRC1, though I am not a carrier).

A few months ago I saw an integrative physician privately (located in Canada). He increased my Estradot to 75, Prometrium to 400, and prescribed testosterone cream at 5mg/g.

Initially I noticed no difference either, but at pretty much the six-week mark since taking the increased dosages and the added testosterone started to feel desire again. Vaginal dryness got significantly better to the point that there is actually some natural lubrication. That’s been about 3 weeks now and geez, it’s like libido came back to needing it twice a day every day. I’m in my late 40s and wasn’t even like this in my 20s.

So, what is happening here? Is it because of the testosterone? If, so what dosage is usually prescribed? Or the the higher Estradot and/or Prometrium as well? Just trying to understand what resulted in such a drastic change after literally years of zero sex, not wanting it or anything. I had resorted to that just being my life now, but now I feel like I got some of that back.

11 Comments
2024/10/27
00:04 UTC

2

BC giving me insane bloating

Anyone else prescribed with BC for their POI? I got diagnosed last year and doctor has said that the best for me would be to take the pill for now. I am 35. I feel sooo bloated even in the mornings. A constant feeling that I am full (I am not) and I am not sure if this is normal with estrogen. Does it resolve if I was to switch to other form of estrogen?

3 Comments
2024/10/26
20:13 UTC

7

I’m going through a big struggle patch.

My obgyn recently referred me out to a specialist 4 hours away. I never take vacation I never get out of my room. I told my mom I thought it would be nice for us to spend 3 days and leave the 3rd day. It is hard to for me to comprehend that my parents are going to the same city, staying in a hotel, meeting up with family friends. My mom wants to come and go the same day, she knows I have friends in this city. I wanted to turn a bad thing into a good thing because what could possibly go more wrong? I lost my childhood at a young age due to this condition. I just wanted to make a positive out of a negative. They don’t understand how hard it is to be 24 infertile and schedules filled with doctors appointments/therapy. I’m just so sad I feel like my parents don’t care how I feel about

4 Comments
2024/10/26
16:08 UTC

3

Recently diagnosed fxpoi

Recently diagnosed FXPOI

Hi, I’m 24y/f diagnosed with fxpoi 6 months ago, my life has not been the same ever since While all other are enjoying their life I’m roaming behind doctors who have no idea of what fragile x is I’ve tried stimulation and freezing my eggs but there were no follicles seen cycle got cancelled Idk what to do about my further treatment, hrt and planning pregnancy in the future I’m actually worried if someone will come forward to marry me.

My amh results were 0.01 Fsh- 60.5 Estrogen- 35

Can someone guide me through the process of further treatment Thank you

2 Comments
2024/10/26
05:33 UTC

6

Is Ovarian rejuvenation worth it?

Has anybody here ever gotten ovarian rejuvenation(prp) done? If yes, then how were your results and for how long? Did it help in maintaining your hormones?

12 Comments
2024/10/25
18:52 UTC

9

Dramatic breast changes

Has anyone else experienced dramatic shrinking of their boobs since going through POI? I’m not sure exactly when POI started for me but looking back my guess is around age 21. Prior to this age I had very large breasts, size 32DDDD. Not exaggerating. Im now 26 and my boobs are size 32B. They have shrunk DRAMATICALLY and they look so shriveled and horrible. Has anyone else experienced shriveling and shrinking of their boobs like this? It’s so bizarre and I’m so embarrassed by the way they look 😓

12 Comments
2024/10/24
17:36 UTC

5

No energy

I never had a lot of energy before POI, but I really miss my old adhd hyper focus which only comes rarely now. I can’t seem to get excited about anything in life or engage in hobbies. Has anyone else dealt with this? I also have other mental health conditions but I believe my exhaustion is attributed to the POI and ptsd mainly

13 Comments
2024/10/24
04:56 UTC

8

Perimenopause purgatory

Hello All! I’m curious if anyone else feels like they’re here too?

I was likely 30 when I started. Now about to turn 46. Lots of life happened in between there. And who knows when I’ll be finished. The constants are mood swings, fatigue & continual weight gain. I’m currently on HRT. Hopefully the right dose and method (finally). Any suggestions on managing any of it? Especially the weight. I’m so over this vicious cycle.

5 Comments
2024/10/24
02:47 UTC

1

HRT/Period questions

I'm on estrogen patch, .5 mg daily oral and medroxyprogesterone 12 days per month. I started bleeding earlier in the month of October w/out having taken medroxyprogesterone and it just started back up while I've been on medroxyprogesterone as I was due to take it. It is painful and clotting. The two days where I first started bleeding my mood was truly scary. Any info on this?

3 Comments
2024/10/23
23:01 UTC

5

Insulin resistance anyone?

How many of you have insulin resistance? Have you looked into this. My new doctor thinks I've got some form of this. Waiting on testing but I do see insulin resistance being a thing. It would make sense why I've been having a hard time getting my postpartum weight off. I actually teared up thinking of how hard I've cut calories and felt discouraged to know now that I've got POI and insulin resistance. Also saw some thing interesting with Metoformin and POI last night too I'll be talking to my dr about.

12 Comments
2024/10/23
17:00 UTC

4

Freshly Diagnosed- questions and feelings

Hi everyone, this will be so long sorry. Around 2 months ago I had my first gyno visit where I was given a working diagnosis for POI but told that there wasn't really anything else that could be causing my issues and they just needed to investigate the reason why this was happening. My second visit was a couple days ago and it was confirmed as POI. Since 2021 (18yrs at that time) my periods have been on and off, usually only staying 5 or 6 months max. I've experienced incredibly high FSH for my age and had some pelvic ultrasounds that revealed how inactive my ovaries were and now I'm here. Doctor said its an estimated 2-7 years before I reach menopause, I turn 21 in a few days so its kind of sent me reeling.

Firstly I wanted to thank anyone who has ever posted on this forum. After my first gyno visit I was pretty upset and felt super isolated. Seeing other people talk about their experiences with this meant the world and is part of why I feel comfortable posting this in the first place. It's taken a while to get to this conclusion, I had some eating issues in the past and pretty consistently poor mental health that means doctors always labelled it as a weight/stress issue. Only when I was referred to this gyno did we finally figure it out. I'm on a pretty substantial cocktail of medications to deal with BPD anxiety and depression and cant imagine having to take anymore medicine. It feels like i've only been able to live normally without major episodes in the last year or so. Because of this I'm worried about when I have to start HRT, what will it do to my moods? will my weight fluctuate? will it interact with any other meds? I know everyone is different but it feels so scary having nothing to go off of so hearing anyone's experience is much appreciated. Idk if it adds anything but im 5'4 and have been consistently at 50-54kg the past few years. My mother actually went through late menopause and we have a pretty strained relationship so not much info on that side, all I know is HRT hasn't impacted her body much. But also considering I thought i'd also have late menopause idk what to expect!

Something that I haven't seen as much of/ been able to understand is what my gyno concluded as being the cause of my POI: Fragile X syndrome. Is this also the cause of most people here's early menopause? Where does it even come from? Many people in my family have neurodivergency/ intellectual disabilities so safe to say its been running in the family for a while. My aunt (fathers side) went through menopause at 40 and has a daughter with severe intellectual disability so having to break the news to her is really daunting to me. I've never wanted kids but being told it's not even worth freezing eggs because of fragile x was pretty brutal so I can imagine how she might feel finding out the possible reason for my cousins disability.

I have no idea how to end this. I feel so scared and alone but I know everyone here has been where I am before so hopefully it means I can get to where you guys are too. Lmk if theres any good books/ podcasts on all this and thanks if you managed to read through/ have any of your experienced to add. sending you all love<3

4 Comments
2024/10/23
15:00 UTC

4

POLL: How many of you gained weight on HRT?

In my case I'm struggling with appetite because of a stomach condition but because I'm not losing weight (even though I experience fatigue and low blood sugar and consistently eat 500 calories lower than my maintenance) it feels like no one believes me. But I also haven't gained more than 5 lbs since going on HRT and I want to get an idea of how uncommon that is.

View Poll

6 Comments
2024/10/22
21:39 UTC

1

Anyone else with gastroparesis? (potentially caused by hormone therapy)

Took me a long time to get diagnosed as I've had issues with HRT making me quite sick and it being written off as normal nausea/bloating. Apparently HRT can cause gastroperesis but this isn't common and I want to know if anyone else has experienced it and what their symptoms look like?

2 Comments
2024/10/22
21:35 UTC

2

period pain and food recipe

I have POF/POI i'm 19 years and after taking 6 months estradiol i got my first fake period i called it like this because it is not a real period but still better than nothing so you know for the context i never had a real period on my own. After research i prescribed cyclo progynova this is a combi pill with estradiol and progesterone and after that i got my period with pain but i wanted to ask is this kind of pain normal after taking progesterone 21 days and then a 7 week pill-pause bc this pain feels weird like it feels like you need to shit but then it goes away and comes again and is it normal to have always a bloody red color in the beginning and middle of your period? Is the pain normal and can the pain go worse for people with POF/POI i just started last year with HRT but does someone has a longer experience with HRT? I really want to know. I'm taking vitamin D i.e 2000 everyday bc it was on 6.5- when i tested it is that normal too? I'm taking vitamin D for like 8-9 months should i stop taking it? I have a appointment and i know i can ask my endo that but this appointments took so long i'm gonna ask here and then later my endo. I've read that without hormones i am at risk of getting bone-loss diseases had someone experienced bone-loss or other diseases or did never really happend bone-loss diseases and what do you need to be careful for the future? Bc my endo doesn't even know what to prescribe me or what to really recommend me bc i'm like the second woman in my whole town or state idk how it's called that's diagnosed with POF/POI. I've started to have a healthier lifestyle often i eat oatmeal with yoghurt, diff nuts, honey with lemon juice and i'm a tea addict and drink tea. I cutted caffein and stopped drinking coffee and so on.

Has someone like more healthy recipes to recommend or what i need to be most careful in the future🥲 thank you for reading my long text💛

1 Comment
2024/10/22
00:57 UTC

23

The start of a long journey POI

32 years old and just diagnosed. All weekend I couldn’t help but feel sad and cried multiple times throughout the weekend. Last Thursday I was told that I have premature ovarian insufficiency. I now see that I have a long journey ahead of me. I already have more doctors appointments scheduled as well as scans and labs that need to be completed. I’ve started hormone therapy. I’ve reached out to a few people in my life, but now I feel disconnected from everything they mentioned that I would feel grief and that I might feel depressed upon finding out this diagnosis. I’m feeling very low. It’s taken several months to come to this. I think I always suspected it, but finally hearing the actual words hit harder than I expected. I’m sad. I don’t have all the answers so I can’t say that I’m infertile or maybe I’m not ready to say the words. I don’t have a partner currently so I feel alone dealing with something that feels so big. I have a therapist but therapy is only gonna do so much for me. It’s when I’m alone at home and I just sit and think about how so many things in my life will change course. I don’t feel like I’m exaggerating. Everything just feels heavy. I have answers but not enough answers. I really just want a safe place to express how I’m feeling I don’t really know anybody else personally who’s been through what I’m currently going through.

12 Comments
2024/10/22
00:47 UTC

3

Sweating

Hey All,

Hysterectomy back in Dec with endometriosis removal. Age 32. Few months later, my ovaries stopped working.

Many months later now, I finally got my estrogen in the safe zone. Doctor even has let me experiment with dosage on what makes me feel best and have it above the bare minimum.

My main issue is most nights I still am having night sweats. Anyone else have problems like this?

My thyroid levels are being checked about every 6 weeks. Although they are slowly moving towards hyperthyroidism and I seem to have those symptoms. I’m still in range, so no one will do anything with that.

Any ideas what to do?

12 Comments
2024/10/21
23:18 UTC

4

Call for provider recommendations

This thread is a spot to recommend a provider you’ve had a good experience with so we can help members find providers in their area.

Please include provider name & location (city, state, country if not USA).

Keep in mind this is NOT an endorsement of any provider mention and you should still use your best judgement when considering who you trust with your care.

Thank you!

1 Comment
2024/10/21
13:17 UTC

2

I need a urgent suggestion

Ok so I am suffering from Ammenorhea. This means I never had my period without medication & hence just for getting periods I take hrt. This happens when pituitary gland is shrinked or not grown. My age is 27 now and I am not yet married because I want to get out of lots of things those are holding me back. I have changed multiple endocrinologists and everyone had a different view though the end result is the same that I will have to take this tablet Till 40 years of my age. While I have gone through various hrt i went through various problems esPecially nausea entire day and night. Recently I was shifted back to Yasmin and I had a weird month of vomiting but then I got used to the tablet. But since I have this hormonal issue since birth I have no breast growth. Though slowly from being flat chested I gained some bodily weight near chest and got a very small breasts but better then flat chested definitely. Recently I had a talk with my endo who said if I am on Yasmin my breast had to grow but if it didn't he shifted me to Ovral G. I need honest reviews on Ovral G. Does it actually help in breast growth as I have no other option but hrt if Ovral G was a better option or I should work only with Yasmin? Talking about my body type I am already obsessed, my weight is more and I am unable to lose weight which is the secondary problem.

9 Comments
2024/10/21
10:58 UTC

9

Does anyone have problems with long-term memory?

Hi all, I'm diagnosed with POF but not on HRT yet as endo wants to wait until I start skipping more periods first..

anyway, I hear a lot about forgetfulness and brain fog as a symptom, but does anyone struggle with retaining things in long term memory?

For example, I went on an overseas trip for a week in August. When I came back, my coworkers asked me about it, and I struggled to recall anything I did without having to refer to my itinerary or photos. Now it's October and I feel like I have hardly any memories of my trip.

In general, it seems I'm not able to commit as much information to my long term memory anymore. My recognition is ok, but my recall, not so much. Is this a POF thing?

9 Comments
2024/10/19
21:10 UTC

8

Limp hair?

34 and newly diagnosed here, confirmed a week ago, although in hindsight I think my symptoms started 2-3 months ago. Since then my hair has been getting super oily. For years I've washed my hair once a week, but now it's like after I wash it in the morning the roots are already greasy at the end of the day. I've always had fine but dense hair, but it's now a lot straighter and really limp. I feel like I can't get it to look good, which I know is kind of shallow but its impacting my self esteem. Has anyone experienced the same thing and found anything that helps? Also, I know hair loss in POI is a thing, wondering if this could be an early sign of that?

5 Comments
2024/10/19
08:23 UTC

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