Quote from: Dietlind on April 16, 2019, 09:08:35 AM
Oh believe me i've had SO many tests run over the years.
I've had mris, ultrasounds, so many internals, bloods taken regularly, heck for the headaches they even gave me an mri and a lumbar puncture!
Eep.
Problem is my hormone profile isn't consistant or really very easy to interpret. I have cystic ovaries but my bloods don't really match up with standard PCOS as my levels are generally too low. Hence the "hypogonadism" diagnosis becuase half the time my body is producing so little in the way of hormones that it's almost as if it's all just failed.
In fact when I had my bloods taken prior to fertility treatment the specialist said she'd only seen those sorts of numbers in people with eating disorders and questioned me on whether I had one as apparently I was in that whole ovarian failure zone.
She offended me. Jerk.
She wouldn't believe me that I was in no way suffering any sort of eating disorder omg.
Thing is, that ultimately, despite countless procedures and such (I had a hysteroscopy and a HSG and oh god the HSG was nightmarish. I was screaming apparently. I was begging them to stop but they wouldn't. It was absolutely awful and they couldn't actually get a good picture of my tubes becuase my body was all "GET OUT!" and clamped down so hard they couldn't get the dye to flow.)
The hysteroscopy I believe is what discovered the gartners duct defect, but they said it was nothing to be concerned about.
It's just a random remnant of the wolfian system or something (or so they told me) which they suggested didn't mean a lot.
last ultrasound they struggled to find my left ovary because apparently it's a lot smaller and hides. I don't know if it's functional.I'm not sure how they'd test that.
It's really hard to get a clear view of because it's behind my bladder and teensy.
righty is a swollen mess of cysts and scar tissue.
Hormonal problems are really common on my mother's side of the family. My aunt suffered so badly she had a full hysterectomy about my age, apparently her uterus had begun to atrophy or something? Eeep. My grandmother did as well because apparently she was hemhoraging regularly. Not periods, actually hemhoraging. Whaaa?
So it seems to be a genetic issue in that side of the family. I have several cousins who have pcos and similar too and fertility issues are really common in the women.
So thanks Mum for your cruddy genes there. Bah.
Now they DID do a chromosome test but i'm not sure how in depth it was. All I got told was "it's XX".
I assume they must have done a pretty in depth one right? But nothing more was every mentioned about it. So unless they were keeping things from me, it sounds like that test was pretty normal.
I could gain access to these test results I believe if I put in a request. You have to pay for the printing but they will give you a copy of your own medical records if you ask. I might chat to the doctor about it, see if she can bring up the results on her screen for me anyway.
I admit, i'd LOVE to see my ultrasounds and the pictures they took during that hysteroscopy. I've never actually seen them and i'm so curious.
Sadly "woman problems" quite typically don't get taken seriously or diagnosed. it takes on average 10 years for someone to get a PCOS diagnosis, not just in the Uk but globally. Likewise there's a really depressingly high statistic saying that women going in to the doctor for genuine complaints like pain are often dismissed over and over again. There was a news report about it recently.
I mean heck, i went to my doctor a while ago because I started getting mid cycle spotting, something i've never had before and of course you're always told that's a reason to get checked out. I went in, explained i was having midcycle bleeding which wasn't normal for me and got told "oh well you have this hormonal disorder, it's probably that" and nothing more was done.
that's how it goes sadly. There's a real subconcious bias in medicine about "woman problems" and as a result there's substantially less research into it and substantially less knowledge.
For the past 23 years i've been fighting medical professionals both in NZ and the UK to get some answers so believe me, I have battled this for a looooong time and i'm no closer to an answer.
Meanwhile they keep testing my thyroid despite it always coming back fine when I mention the hot flushes. Idiots, it's not my freaking thyroid!
I've wanted them to check my ovarian function for a long time because if these suckers are failing I wanna know. If i'm actually dealing with early perimenopause then that kinda should be looked at you know?
I'm just sort of exhausted by it all. Ultimately I want these diseased, broken bits outta me. STAT.
but I also know that realistically, removing my ovaries isn't neccisarily the answer as i'd still need hrt of some sort.
And I admit, I have wondered if my hormonal problems are WHY i'm so eager to transition but then I remember that cis women would NOT look at testosterone and transitioning as an appealing solution to this problem at all. Cis women wouldn't look at their excess body hair and smile. Cis women wouldn't actually be taking a great deal of delight in presenting as male and looking forward to presenting as MORE masculine.
So it's not JUST my health problems that make me want to do this. But they sure as heck aren't helping the situation and are no doubt contributing to the dysphoria and feeling of general wrongness i've got going on.
It's interesting because I previously said i'd never experienced "i want to tear my skin off" traditional dysphoria and then when I had those headaches and my ovaries were hurting you know what I wanted to do? Schlup those ovaries out with a spoon!
THAT is exactly "tear my skin off" dysphoria!
and I realise i've wanted to do that for decades and just never been able to because it would require hrt and the idea of putting MORE estrogen into my system makes me feel so uncomfortable. Like on man, I literally just felt my skin crawl at the idea.
One of my doctors the other day asked me flat out "why do you think the headaches are hormonal?" and I was all "are you actually serious? becuase they show up exactly a day or two before my dang period EVERY TIME?"
she doesn't believe me. -_-
Like.. woman, I have had these headaches for seven freaking years now, I think I have a pretty good idea of when they show up.
as for why, well that's pregnancy related apparently. I had pre e with my youngest and for whatever reason that broke something and resulted in ongoing cluster headaches and migraines (with aura). The migraines are less common than the cluster headaches thankfully but they make me go blind for a bit, it sucks.
and the specialist said it was because of a combination of the pre eclampsia and the fact pregnancy rewrites your biochemistry. From what I was told, every time you get pregnant you roll the genetic dice again and certain genes might unlock or lock. So sometimes it makes things go away (like my hideously painful periods) and other things crop up (like the cluster headaches and massive swelling/fluid retention and my allergy to kiwifruit. Thanks.)
What I learned from this is that pregnancy is a big gamble and you might irreperably mess up your health forever.
great.
Why don't they teach THAT in sex ed?
I'm genuinely at a point in my life where if I hear the word "idiopathic" one more time i'm actually going to flip a desk.
Like no joke, the urge to punch the next doctor who tells me something is "idiopathic" is intense.
Of course, i'm currently hopped up on crazy juice so i'm feeling REALLY aggressive this cycle. For the past week i've sort of wanted to punch something. Maybe I should go for a run.