u/Miracular-Impress173

Long post.Please read this post as I believe it will help a lot of you --

I don't know where to start from , but I am suffering from primary amenorrhea. Primary amenorrhea basically means someone who never attained their periods , not even once in their whole life. The cause of my primary amenorrhea isn't

•being underweight

•being overweight

•pcos/pcod/pmos

•POI/POF

•or even classic HA

The cause is isolated uterine hypoplasia. Uterine hypoplasia refers to a small uterus .Maybe it's congenital or maybe it's due to the low estrogen I had for 6 years...

Now when you have uterine hypoplasia, doctors( or some people with just a degree and no desire to help and limited knowledge on amenorrhea) start suspecting and diagnosing MRKH.

MRKH syndrome refers to condition in which your mullerian ducts have a type of anomaly where you uterus ,cervix and upper vagina is absent or severely underdeveloped. And it's a very very rare syndrome , so it's important to know that it's very unlikely you have it.

Now it's important to understand that prepubertal uteri are quite underdeveloped and can be often mistaken as MRKH. Also there are many imaging limitations , expertise of the technician/radiologist alters your results a lot.

So how to ward off this misdiagnosis( as I have learnt and i am doing in my case)

check your vaginal length (it's really easy, order a long q-tip of 10+ cm ) and see how much you can insert . You can mark the part and measure it with a scale to check your vaginal length. Also don't forget to repeat it , as sometimes the position of cervix might change and give false results.
ask your doctor to prescribe a estrogen pill . Not a contraceptive, the dose is too weak to force your uterus to grow. In order to protect yourself against endometrial hyperplasia and certain type of cancers, also ask them to administer a progesterone medication for the last 10-12 days. If one doctor doesn't co-operate and asks you to 'wait and watch', go to another doctor . Believe me , if you already in your late teens or twenties, it's already too late and you have already waited a lot. Crossing this timeline might bring the risk of being amenorrheic forever . And that's the worst curse a woman can ever have... So many health issues , low immunity and never being able to conceive and have comfortable sex.
during the break of the medications(each month you will be given the meds and a break) , you are expected to bleed, spot , or atleast notice a few streaks of blood(microspots). Within 3 months , you should bleed. Any type of blood counts. It can be a microdrop , a drop, a streak , or just reddish brown discharge. If you get it , you CANNOT have MRKH because congrats, you do have a complete reproductive tract. And that clashes completely with MRKH. Also it proves that your endometrium and uterus can respond to medications and hormones.
now , switch to a patch . A transdermal estrogen patch .Believe me , while the pill gives some stimulation to your uterus and endometrium and helps it to grow upto an extent, your uterus and it's receptors require uninterrupted constant levels of estrogen. Depending on the country you reside in , it might be really hard to find it , or your doctors might not prescribe it due to the scarce resources, but it's the key to the cure of estrogen deficiency and uterine hypoplasia. Not only uterine hypoplasia... Even if you only have estrogen deficiency you definitely need this ... You can try to find it somehow , and if you can't, I will help you to navigate it.

5.Never discontinue your treatment. Believe me , although it sounds harsh , doctors treat you as an appointment , a case file and a person who's expected to have problems. Doctors often misdiagnose. It may sound funny but if you research on a particular topic , you will become more knowledgeable in that particular field.No problem how long it takes , what it takes , you have every right to be healthy. You don't need to 'accept' your health issues and every misdiagnosis stacked on you. Your efforts aren't useless.

Don't be afraid to find the cause. Believe me , finding the cause is the most challenging aspect. Do the bloodwork , use AI, Reddit , Quora or any other social media platforms to know what your reports mean. And based on that, do WHATEVER IT NEEDS.

I am navigating through this too and I believe I shall overcome. I think many of you will require this.

**Also if you are underweight, don't step back from gaining weight. You are absolutely beautiful anyways ,**and the standard set by different countries are so so different... Even if in your country being a little chubby is seen as unattractive, in some other country being chubby IS the beauty standard. Even being thin is unattractive in some people's opinions , the term beauty is so subjective and it's just a source of trouble created by mortal beings. I know gaining weight isn't an easy task , but cut off your exercises(specially cardio) , eat healthy but a little extra.

If you are overweight , don't be scared to burn those extra pounds... Don't compromise on eating much , just eat healthy and reduce the fats ... It can also be a cause for your amenorrhea...

If you have any Thyroid issues , ditch your medications and start exercising and drink coriander water(boil coriander seeds and strain the water with a sieve and drink it) ... It will heal naturally , you don't need those extra medications for it.

All of this counts even if you have secondary amenorrhea, just you can brush off the MRKH part as you can't have that.

Note- this post isn't made to promote hate against doctors, any professions or to replace medical help, it's just a humble attempt to help out girls who are suffering from amenorrhea.

I am 17. These are my findings -

•Primary Amenorrhea

•Uterine hypoplasia(4.5cm)

Now my lab reports

•I am completely of health normal weight , my BMI is around 23.8

• ovaries normal

• karyotype normal

• dheas, testesterone , shbg, lh:fsh ratio normal , no pcos

• taken estradiol valerate-2mg and dyhydrogesterone(progesterone) -10mg for 6 months . Now having cyclical spotting both on-off medications

• AMH 4.65(literally so good)

• estrogen before meds 47pg/mL , now after meds 113pg/mL

• lh-5.95 , fsh before meds 7.5, after meds now 3.3

•vaginal length 9.5cm

I literally can't understand what is wrong with my body ... Literally nothing. Everything feels normal , estradiol earlier was a little low but now its normal . What can I do 😭😭

Doctors are literal idiots(sorry because I am overreacting , but i am angry) ... They just do counselling which I literally don't require. I just want my periods, that's it. I don't even think about children and marriage now . I just want my periods and don't want to know who has what problems , whether I am fortunate in other ways or not. I will get it somehow. That's the start, and that's the end. I am not at fault for expecting treatment from doctors instead of the work of a psychologist from them . I have every right to be a perfect person and I won't be answerable to why I want it.

If someone can help me I will be highly highly highly obliged to you and grateful forever.

Hello, does anyone know about a pharmacy in Athlone who is genuinely interested to help and give me my hrt transdermal patches?

Hello, does anyone know about a pharmacy in Athlone who is genuinely interested to help and give me my hrt transdermal patches?

Don't be afraid to advocate for yourself

I need estradiol patches in India (urgent)

I am really in a bad situation 💔💔