u/Certainly-a-duck

After 2 whole ass years going through hell I finally did it!! It's been a crazy fight. I want to share my story incase theres someone like me here. Scroll down for the paraphrase.

For those who don't know my story, I don't fit perfectly in the POI diagnosis criteria... but my symptoms are too severe and my hormones are too low to fit in the DOR box. Every other possible diagnosis has been ruled out 4 times.... so the final thought is: I'm in an early stage of POI and the severe low hormone symptoms came earlier for me. As my cycle sputtered out, I was given BC... but I never got repeat labs... so I'll never know if my FSH rose. I'll never have closure in that way.

I'm not sure if anyone else in this group has had the same experience diagnostically, but it has been an absolute horror to try and get proper treatment as someone who doesn't fit in the box. Dr's look at my labs, graze past the multiple low hormone readings, and see my FSH, LH and AMH. They hear the severity of my symptoms, and then look back at their computers, ponder over the FSH LH and AMH.... and say no. "No, you can't have HRT. No, birth control is the better option. Birth control has more hormone in it anyways. Also therapy, you're too anxious."

My own menopause specialist was super out of date with black box warnings and dismissed me everytime. I shouldn't have to wear Depends as a 23 yr old... but she'll help! And then 23 turns to 24, and then to 25... I ended up getting so anxious for any Dr's appointment because it felt like I was preparing for war. She felt like the only option. My 2 different endocrinologist referrals would take years to see and I'd seen 4 doctors already who all said #1 "youre crazy and need therapy." Or #2 "I can see somethings wrong, but I'm not knowledgeable enough to help."

So I finally tried one more time for a new dr. My boyfriend had multiple head injuries that left him with low T levels, and his dr has been a godsent for his hormones.... I asked during one of his appointments if he was comfortable with woman's hormones... and he said he'd take a crack at it.

He kinda treated me like a man. He saw that my FSH, LH and AMH were weirdly okayish.... but he honed in on the low hormones and saw that everything was ruled out except for POI. He listened to my symptoms and started me on a really weird regime. The synthetic progesterone in my BC was too weak and I still couldn't sleep... so he gave me bioidenticle progesterone on top. He gave me a new (and stronger) compounded estrogen cream for the external vaginal atrophy. He heard that I was forced to change my stupid BC patch every 72 hours instead of 7 days cuz it ran out of juice. He wrote a prescription so I could continue doing that.

I still wanted HRT, and the cost of the uninsured 72 hr throwaway BC was killing me. I told him I couldn't afford it, and he said "thats fine, bioidenticle is covered for you, so lets do that." He told me to take the 1 pump compound cream I was using on my vulva for vaginal atrophy and increase it to 4 pumps, spreading it on my thighs and belly.

I didn't believe him!!! I was so scared and so ready for a fight, I thought he was crazy for making me spread vaginal atrophy treatment on my body. Surely it wouldn't be systemic!?

Well, yesterday I learned that compounded creams are systemic in larger doses lol. I am now the proud owner of a continuous regime of 1mg of bioidenticle E2/E3, and a taker of 200 mg of bioidenticle progesterone. And if that's not enough after 1 month.... he will increase me again and again until I am symptom free and have the hormones of a 25 yr old (including testosterone). As for right now. I feel AMAZING. Within 6 hours of ripping off my BC patch and putting on the cream, my heart palpitations stopped and my blood pressure dropped. For the first time in 2 years I felt happy and hopeful and energetic. I haven't had a single hotflash and my skin is bright again.... and I'm only on 1mg of E!!! Thats like 4mg of synthetic E (and I was suffering on a 35mg BC patch!) I want to kiss that weird old man on the mouth. I was ready to give up on my old self and accept that I was broken and hopeless. I cannot believe the difference between bio and synthetic hormones, and I'm so goddamn relieved that my fighting is finally over. I won't ever know what happened to my body, but after 2 years of just wanting to feel okay, I don't think I really care that much anymore. I feel so at peace. I'm gonna go on so many hikes and bike rides and have so much fun and shag my boyfriend until hes dry!!!

-----paraphrase

I don't fit in the poi box perfectly, and multiple doctors have said it must be an early stage of POI after ruling out everything else 4 times.... but because I don't fit in the box, getting proper treatment was impossible. My menopause specialist sucks, was out of date, and we hate her💅. I saw a new dr (who is my boyfriend's testosterone dr). He is weird, but has finally treated me like a human, we love him!!!!!! I understand the HRT vs BC hype, HRT has made me feel perfect! For now I am on a starter dose (1mg E2,E3 + 200mg P) of continuous HRT with plans for increases and T in the future! For the first time in 2 years I feel myself and have hope for my future.

Saw a new dr today. He wants to keep me on my birth control transdermal patch (35 estrogen/2 progesterone) and add on 100 mg of oral micronized progesterone to help me sleep and change my external vaginal atrophy cream (currently a low dose of E2 and testosterone) to a higher dose combination of E2 and E3 (20:80 ratio) without testosterone.

He then wants to consider next time trying clomid to stimulate more estrogen and testosterone production or just plain testosterone injections.

My goal today was to NOT be on birth control anymore and instead to be on HRT. I've also never heard of someone taking BC and bioidenticle progesterone at the same time. I also wish the new cream had testosterone, but I'm glad the dose of estrogen is higher. This dr seems willing to try non-standard doses of HRT down the road and wants to see me monthly... whereas my menopause specialist seems to just want me to suffer on the lowest doses of everything for 3 months and seems super out of date with current guidelines.

What do you guys think?

Does anyone here actually feel okay? Symptom free? Happy with where their treatment is? Satisfied with their dose? Trust their Dr?

I am so scared. I had this idea that someday in the next year the Dr's are going to give me enough hormone and I'll be the exact person I left off 2 years ago. I thought "I just have to get around the mismanagement and keep fighting".

But some of you guys have been doing that for way longer than 2 years. Maybe my vaginal atrophy is too far gone now... and maybe I'll never feel myself again.

I feel like I need to know if it's time to grief the person I was and let her go.

I feel bad for leaving. I feel that reasonable people owe their province to stay... but I think at this point it's hurting my mental health and physical health. Everytime I see a lifted truck with a 20 child blindspot and a confederate flag, it ruins my mood. My financial stability is at stake as a disabled person on AISH, and things are only going to get more expensive. The air is cleaner just about everywhere else in Canada, and my lungs hurt when I'm in the city. I roll up the windows at every intersection because there's going to be one car that peels off at a green light with an ear damaging level engine and a plume of black diesel smoke. There's a guy living 2 blocks down that owns a car with upside down canada flags with swastikas in the maple leaves. One of the nature areas in my childhood city is being turned into a highway. All my friends have left years ago and tell me they didn't realize they were depressed until they moved.

As someone on aish, moving is damn near impossible... but I don't feel safe here. Some people look at me like they know their tax money is going towards my survival. Anywhere I go, rent is gonna be high, groceries will be high, Dr's will be short, and benefits will be low.... but maybe I'll be happier and healthier if I didn't feel like I was living in confederate texas too.

24F who started experiencing menopause symptoms at 23 while still cycling regularly. First lab was done at 23. All labs done during luteal phase. Symptoms included hot flashes, vaginal atrophy, irregular periods, night sweats, difficulty sleeping, dry eyes, tachycardia, low libido, muscle wastage, dry skin, fatigue, moodiness, unexplained high cholesterol. Symptoms worsened overtime and cycle became less regular. All symptoms helped with synthetic hormone along with vaginal estrogen.

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First lab (already experiencing symptoms at 23)

-Estrogen at 266 pmol/L (normal range 220-850)

-Progesterone at 30 nmol/L (normal range 15-90)

-FSH at 2.5 IU/L (normal is under 7)

-LH at 2.1 IU/L (normal is under 15)

-AMH 15.1 pmol/L (normal range 8.7 - 83.6)

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Second lab done as symptoms worsen (23 luteal phase)

- Estrogen at 44 pmol/L (normal range 220-850)

- progesterone at 1.6 nmol/L (normal range 15-90)

- FSH at 7.1 IU/L (normal is under 7)

- LH at 6.0 IU/L (normal is under 15)

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3rd lab done as symptoms worsen (24 luteal phase)

- Estrogen at 116 pmol/L (normal range 220-850)

- progesterone at 1.7 nmol/L (normal range 15-90)

- FSH at 5.4 IU/L (normal is under 7)

-LH at 3.4 IU/L (normal is under 15)

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Negative for PCOS, thyroid issues, addisons, adrenal issues, and STIs.

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Birth control and vaginal estrogen was started after 3rd lab and greatly improved symptoms, but total symptom management has not been reached.

If it's not primary ovarian insufficiency... what is it? Is HRT recommended to treat symptoms?

I post too much here:( An update: I am in search of a second opinion (I have 2 appts set up and will turn to telehealth options if those 2 fail). I have FINALLY gotten a hold if my labs. I've accounted for where I was in my cycle when I had my blood drawn... I wasn't expecting what I saw.

First labs (done by a walk-in when I was already having symptoms of low estrogen at 23yr, levels all normal):

-Estrogen at 266 pmol/L (normal range 220-850)

-Progesterone at 30 nmol/L (normal range 15-90)

-FSH at 2.5 IU/L (normal is under 7)

-LH at 2.1 IU/L (normal is under 15)

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Second lab done by a menopause specialist at 23yr, some levels abnormal

- Estrogen at 44 pmol/L (normal range 220-850)

- progesterone at 1.6 nmol/L (normal range 15-90)

- FSH at 7.1 IU/L (normal is under 7)

- LH at 6.0 IU/L (normal is under 15)

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3rd lab done by a menopause specialist at 24yr, some levels abnormal

- Estrogen at 116 pmol/L (normal range 220-850)

- progesterone at 1.7 nmol/L (normal range 15-90)

- FSH at 5.4 IU/L (normal is under 7)

- LH at 3.4 IU/L (normal is under 15)

My menopause specialist has been withholding substantial treatment for years because of these labs. For 2 miserable years, I have been told that my estrogen and everything looks fine and PERHAPS I was a tiny bit low on the 2nd lab, but in reality my estrogen and progesterone were very low for the 2nd and 3rd lab. She's been throwing around POI as a diagnosis but also treating me like I don't have any abnormal labs. My FSH and LH were never given a chance to rocket upwards because I was still cycling when the labs were taken, and then I was started on birth control which would suppress my FSH anyways. Meanwhile I was suffering from just about every peri-menopause symptom under the sun and wishing I'd just die already. Idk if this is POI... but my estrogen and progesterone are not fucking normal. No wonder birth control wasnt enough to resolve my symptoms. Not even taking 2 birth controls at once is enough (I know I shouldn't be doing that, just hella desperate). I recovered from a 10 year eating disorder at 22yrs. My bone density was at risk and I had precious years to max out on bone density before I reached peak age. Those years were WASTED.

My menopause specialist sucks. She must have a doppelganger going to recertification meetings for her. I BEGGED her for HRT again. I explained that out of desperation I started taking 2 birth controls at once and the increased dosage helped me greatly. I explained that the vaginal estrogen dosage was still way too low. I explained that my boyfriend has had a vasectomy and I am not interested in a contraceptive and that my libido is very important to me.

Her response:

1. Put me on another birth control... this one is a combo patch with the SAME DOSAGE AS THE LAST PILL (the same pill that led me to desperately take 2 pills at once). The thinking here is that I might absorb it better because its a patch.

2. NOT increase my vaginal estrogen dose because of cancer risk. (I am taking 10mcg vaginally every 3 days, and 0.1mg/ml of estrogen and 1mg/mL of testosterone every 2 days and my vulva and vagina are wasting away painfully.

3. Suggest daily coconut oil for atrophy pain.

4. Plan to put me on a bioidenticle estrogen + Slynd (a mini pill) for progesterone management if the current treatment fails. This will not address my libido concerns.

5. Wait for an endocrinologist referral to come through to help with bioidenticle HRT prescriptions (that she should be qualified to do herself). This may take years.

6. Tell me to rebook in 2 months (better than 3, but devastating when I can tell that the treatment isn't enough in about a week.)

Everytime I go in there it's like walking into an advertising firm. There's products and treatments and brochures everywhere. 1 1/2 years ago she diagnosed me with pretty severe vaginal atrophy and said she will not prescribe me vaginal estrogen until I attended pelvic floor therapy. The upfront cost was $270 and every 2 weeks after that it was $180.

I'm calling support to view my labs so I can finally see what's going on myself. I cannot trust her to put me on a reasonable dose of hrt in 2 months. I cannot trust her to keep increasing my dosage until complete symptom management. It's been 2 years of suffering. Going on HRT in 2 months feels like a win, but not when I remember she's prob gonna start me on the lowest dose possible and force me to wait while suffering again.

I'm in alberta Canada. Any reccs for drs? I've already been referred to an endocrinologist but I need help soon. I can't live like this.

I had severe vaginal atrophy that has been half ass managed for 2 years now. I hate the way my vulva looks. Despite suppositories and compounded estrogen and testosterone cream, my stupid junk is dry and thin and looks like someone took a meat tenderizer to it. I am the beef pieces in your Chinese buffet chow mein. My pelvic floor therapist suggested catheter lidocain. My menopause specialist is too cautious to treat me properly. I don't want to have to slather on creams and shit every other night just to have a "functional" vagina. I dont want to have to schedule sex with my partner around my treatment. I don't want to be unable to use toys or do finger stuff. I am 24 and I don't deserve this. I just want to be normal. I want to feel sexy when I take my panties off.

In 2 days from now I am going to beg my doctor for HRT and a stronger cream... but I have doubts. I am feeling so down right now. I feel so ashamed and Inadequate. I wish I could show Dr's a picture of my vulva before all this so I can demand that this isn't good enough. I NEED more hormone

I've heard that in menopause age women, FSH doesn't really start to skyrocket until after periods have stopped (not during the perimenopause years). I know a lot of us have had perimenopause symptoms leading up to a diagnosis... When did your FSH rise? Were you able to convince your Dr to give you HRT before the FSH was out of the normal range?