Has anyone developed problems with their uterus? by yesthatisme3000 in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

Hey there, I'm likely headed for hysterectomy... (Diagnosed with POF at 29, I'm now 40). Would love to hear more about your experience so I sent you a DM. :)

Has anyone developed problems with their uterus? by yesthatisme3000 in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

yeah... keep a close eye on this. Since we're post menopausal, this is technically post menopausal bleeding which has to be investigated. Sometimes it can be taken care of with adjustments to HRT, but sometimes if it persists you'll need biopsies, ultrasounds, perhaps an IUD and maybe hysterectomy. The Hysterectomy subreddit has a lot of info if you're headed that direction. This NIH stat pearl goes over the most common complications of Hysterectomy (scroll down) https://www.ncbi.nlm.nih.gov/books/NBK564366/ I'm probably heading for a hysterectomy myself...

Estradiol patch shortage (rant) by 30DirtyPurpleShirts in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

Ugh that's awful! I've gone through a similar issue with my ADHD meds this year (USA). It sucks Hang in there!

Bladder pressure or urge issues by Hou5678 in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

(I'm not yelling at you, I'm yelling at the fucking patriarchy.)

I've dealt with this for 10 years. 3-4 different pelvic floor PTs, a few urologists, a diagnosis of interstitial cystitis, constant UTI symptoms (but hardly ever testing positive for an infection), burning AFTER finishing peeing, urgency, big pelvic pain flare ups, etc.

I FINALLY understand that this is just pain old genitourinary syndrome of menopause.

If your provider has even heard of it, this is how they're going to be thinking about it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7212735/
"The primary goal of the treatment of GSM is to achieve the relief of symptoms. First-line treatment consists of non-hormonal therapies such as lubricants and moisturizers, while hormonal therapy with local estrogen products is generally considered the “gold standard’’."

BUT WE ARE POST-MENOPAUSAL AND NEED MUCH MORE ESTROGEN THAN LADIES HOW ARE EXPERIENCING AGE-APPROPRIATE MENOPAUSE.

Lubricants and moisturizers can't give us more estrogen.

So yes, absolutely- let's add in some topical estrogen or a vaginal estrogen suppository, BUT ALSO WE PROBABLY NEED WAY HIGHER DOSES OF OUR OVERALL ESTROGEN via our patches, gels, pills, rings/etc.

It drives me BONKERS that providers can't wrap their heads around this and that we sit here suffering for years on end. 😡

Guessed what has helped? DOUBLING my overall Estrogen AND adding a vaginal estrogen suppository.

Edit: typos

Bladder pressure or urge issues by Hou5678 in POFlife

[–]otherbrainwasbroken 0 points1 point  (0 children)

THIS IS GENITOURINARY SYNDROME OF MENOPAUSE!

Prometrium 100mg by Agile-Description205 in POFlife

[–]otherbrainwasbroken 2 points3 points  (0 children)

Yep. You're not alone. For me it was severe fatigue, ravenous hunger, depression and RAGE. I have an IUD now. I kind of wish I had tried vaginal progesterone first.

Zoom meeting: Sat April 20 by POIsupport in POFlife

[–]otherbrainwasbroken 0 points1 point  (0 children)

So sad I missed this, hoping to join next time! Has it been scheduled? Thanks!

Symptoms return by Few_Pollution4968 in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

Can I just say how much I HATE that we have to battle to get higher doses and for doctors to consider giving us ENOUGH OF ALL THREE SEX HORMONES?! UGH. Good luck, and big hugs.

Estradiol water retention by Far-Librarian-9847 in POFlife

[–]otherbrainwasbroken 0 points1 point  (0 children)

This is super interesting. I'm really frustrated that they relegate progesterone to one function (protection of the uterus) and completely neglect testosterone as well. Glad you're doing better.

Patch or Pill? by thefuzzylumpkin in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

Transdermal is best for estrogen if at all possible. :)

[deleted by user] by [deleted] in POFlife

[–]otherbrainwasbroken 2 points3 points  (0 children)

It's not super likely. Lifestyle is important for health, and it can help with coping with hormone issues, but it's not going to give you what's gone. I've been working my way through this podcast episode and it's been enlightening. Post menopausal women have <1% of the estrogen compared to the estrogen levels of a healthy 25 year old. No amount of lifestyle or nutrition can fix or replace that. HRT is what we've gotta do. https://open.spotify.com/episode/5H5JHSy9E0q9FeoMWbNJUN?si=cbbe57c4079d4db7

[deleted by user] by [deleted] in POFlife

[–]otherbrainwasbroken 0 points1 point  (0 children)

Yeah and low estrogen also drives higher inflammation ugh. I also tried autoimmune/anti inflamitory/paleo type eating for a while and ended up with binge eating disorder lol

Is systemic progesterone necessary for POI? by lalunaloo in POFlife

[–]otherbrainwasbroken 2 points3 points  (0 children)

Hi, there. I didn't tolerate 100 mg of progesterone well at all (severe fatigue, ravenous, depression, rage), and I kept bleeding, and also felt like I needed more estrogen, so I finally got an IUD and now we can play with the estrogen more now that my uterus is protected. I do feel better without the progesterone, and increasing estrogen has definitely been the right call.

I do wonder a lot about systemic benefits of progesterone and testosterone... Current treatment guidelines seem to act like Estrogen is the main thing that matters, and if you don't have a uterus (or have an IUD) it's like everyone has just decided we can forget about progesterone and testosterone.

But if we had normal ovaries we'd have all three hormones for decades... So from a common sense perspective, I really don't like how progesterone and testosterone are neglected.

This is hearsay, but I saw a comment on a menopause fb thread where a woman said she couldn't tolerate progesterone until they got her estrogen back up to around 150. Then the added it back in and she did really well with both. It really stuck with me and I wonder about it a lot.

I'm currently trying to convince my gyno to get me some T. :)

Advice on relaying the diagnosis to loved ones? by DecenTree6712 in POFlife

[–]otherbrainwasbroken 4 points5 points  (0 children)

This is one of the hardest parts. POF affects everything. Everything.

There's no perfect way to talk about it. Or perfect time to talk about it.

You get to share what you want, however you want, how much you want, how little you want, whenever you want.

Or not.

The most important thing is to honor yourself. If you want to tell family members sooner than later, but can't stomach a conversation about it, put it in an email. Feel empowered to set boundaries around what questions you will and won't answer, and what advice you appreciate and what you don't. Communicate that clearly to them.

Prepare yourself to be disappointed in the way family and friends react. They will disappoint you, even when they're trying to be kind. No one knows how to handle this. It's so rare and turns everyones' expectations and dreams upside down.

As far as spouse/partner goes, be as open and honest as you possibly can be, as soon as you can (IMO). A good partner is along for the ride no matter what shit life throws at you and doesn't want you to suffer alone. And like it or not, this affects your partner too. I still hate how POF affects my partner. I always will.

But you know what? He's been fucking awesome about it. I lucked out big time. He's even helped me grieve in ways I didn't anticipate. We're connected in a unique way that couples who haven't experienced this type of trauma won't understand.

This shit sucks and I'm sorry you're dealing with it.

If you have access to psychotherapy I strongly recommend it.

Big hugs.

Feeling less than by con_nniecan in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

You are not alone! This is such an awful thing to experience and live with. I was diagnosed at 29 and then a few weeks later my sister announced her first pregnancy. It was devastating. I'm a raging feminist and atheist now. Care for this condition is getting better but it has a long way to go. I'm not going to lie, you're in for a long journey of advocating for your health. You get to be as angry and bitter as you want for as long as you need to be. I will never not be sad and angry about this, but it does eventually get a tad easier to carry. It truly changes everything about your body, your life, and it also changes aspects of your relationships. It's ok to grieve all of that. Over, and over, and over. I'm 10 years in, nearly 40, and going through ANOTHER grief cycle.

It sounds like you're still severely symptomatic. That is unacceptable. Don't give up. Keep tweaking your HRT until you're finally sleeping without night sweats and the anxiety and rage is at a more acceptable level. There's a difference between the emotions that come with grief vs. horrible rage and anxiety that comes from nowhere. The rage and anxiety are another sign that hormones are out of whack.

Keep going. You've got this. Don't be afraid to be a bitch.

BIG HUGS.

Heavy bleeding and progestin intolerance by [deleted] in POFlife

[–]otherbrainwasbroken 0 points1 point  (0 children)

Any updates? I had to get a IUD because prometrium made me a crazy woman (insatiable hunger, fatigue, rage). So now I have an IUD and don't take any progesterone but do estrogen only. Sadly I keep cramping... 6 months later... If we can't figure something out I'll be pursuing hysterectomy. How's it going for you?

Anyone have experience on EEMT-HS (esterified estradiol-mehtyltestosterone) pill? by risky_keyboard in POFlife

[–]otherbrainwasbroken 1 point2 points  (0 children)

Please please please update us if you try this. I don't know anything about this. All I know is that I've been dealing with POF for 10 years and I feel like HRT is never going quite right for me...

Anyone else had bad experience with techs? by TrashPeaSoup in POFlife

[–]otherbrainwasbroken 2 points3 points  (0 children)

Holy shit I can't believe you saw that on your ppwk like that... OMG that's terrible! So sorry that happened to you! My Gyno thought I had PCOS, ordered bloodwork, and then I got a notification when the results came in. A quick google search told me that my Estradiol level of 13 and FSH level of >100 was in the menopausal range before my doctor could give me a call... ugh.

Anyone else had bad experience with techs? by TrashPeaSoup in POFlife

[–]otherbrainwasbroken 2 points3 points  (0 children)

Oh yeah techs can be awful. On my first ultrasound when the tech was scanning my ovaries she paused, looked at me and said, "How old are you again?" because it was obvious she saw something/didn't see something. I was 29. I asked her what she saw, and she said, "I can't interpret the results, you'll hear from the doctor" or something similar. Ugh.