My gp has given up on me.

[F_P_M]

So okay, a few weeks ago I went to my doctor and I asked for a referral to the GIC. I explained about my feelings of not being female, about my history and she agreed to fill out the form.

Problem is, after that I asked about progesterone only contraception like the implant or coil not for contraception reasons (my husband has had the snip) but because I need something to counteract the chaos estrogen is wreaking in my body. I'm REALLY sick because of it and I desperately need something to tide me over till I can get T and hopefully get these ovaries outta me.

She refused.

She said that she could only do it for contraception and implied that because i'm not a "woman" I magically don't need gynocological care anymore.

She told me to go to the family planning clinics elsewhere, but there's a big problem with that. 1: they won't do the implant or coil at the first appointment, you have to make two appointments and 2: their wait times are several weeks.

It's thrown up another hurdle in front of me and one I honestly don't have the strength to climb.

I just don't understand WHY she's being so difficult. She HAS the stuff there to do it, she agreed to do it a year ago before I came out to her and we decided to wait because I was scared of the internal and she was waiting for them to go back to their old supplier for the implant as the new one was causing problems.
So we put it on the back burner and waited.

Since then my symptoms have got a LOT worse. I'm getting hot flushes, i'm overheating in the night to the point I cannot sleep and i'm having nightmares that seep into the waking world as I come to. I'm feeling anxious and over emotional despite my antidepressants to the point I don't feel like I have any control and it makes me feel so disconnected from my body and even my mind. I have now got cysts that are no joke, the size of like a golfball in my left breast which is so painful I could a few days ago not even raise my arms above my head. My back is covered in angiomas that burst and bleed everywhere. I've got headaches and nausea now too. Freaking nausea. I can no longer travel by bus without nearly being sick. I NEVER get motion sickness like this and I don't drive so now i'm kinda.. trapped, unable to travel any distance. And i'm still experiencing massive fluid retention and swelling.
Oh and i'm hypertensive again. Yeah... 140/95 sort of level.

and it all points to estrogen dominance. They've tested me for literally everything else and came back "oh it's idiopathic, you have a hormonal disorder, this is to be expected" (riiiight so i'm just supposed to be miserable the rest of my life because my body can't function? Awesome, good to know NHS)

That or i'm going through early menopause and honestly that'd be freaking wonderful because i'm so DONE with being poisoned by my own stupid body.

My plan was a sensible one. The treatment for estrogen dominance is to rebalance it by giving you progesterone.
Now I don't LIKE progesterone. It makes me nauseated and when you stop taking it you bleed and bleed and bleed and it suuuuucks (because obviously the last thing we guys want is that nonsense right?) but right now that seems preferable to the escalating nonsense that's happening to me.

My body is making me so sick. It's obvious to me it's broken and was never supposed to be built this way. Ever since puberty hit and ruined everything i've been getting sicker and sicker and sicker.

I can't do it any more.

and I don't know what to do. I'm searching like every damn family planning clinic and its the same story. Weeks of waiting for that first appointment, a second appointment neccisary after which could take several more weeks.
and no guarentee the progesterone won't make things even worse because I appear to actually be allergic to female hormones. Awesome, isn't that wonderful?

I desperately want T, I want my ovaries out so they can stop poisoning me. I want to be able to live my life without wanting to die.

But there's just too many hurdles in the way and i'm too tired and too weak to climb them.

I'm feeling really quite hopeless today. And extremely resentful and dysphoric.

I just don't understand why my doctor won't help me. What'd I do wrong?

Untreated I have no doubt this is going to actually kill me. And the worst part is, nobody actually cares.

They gave up on me a long time ago. Washed their hands of whatever is wrong with me and chalked it down to "it's a medical mystery".

My belief is sincerely that I was not supposed to have these parts. That something went horribly wrong in utero and since then my brain has been in direct conflict with my body about what to do with the mess, which hormones to produce, how to produce them and in what quantities and as a result nothing works and everything is getting damaged.
As i've said before, estrogen to me is like pouring petrol into a deisel engine. That's how it feels.
It always has felt wrong and as the years go by the damage it's doing becomes less and less ignorable.

[Maid Marion]

Doctors have their own ethical standards to follow.  Telling you how to get what you want may be as far as her personal standards allow.

It is normal not to say "no," even though the answer is "no."  From what I've heard you will never get a "no" answer in Japan, just that it will take a very long time.  Common practice is to say one thing and convey "no" via body language.

[Ryuichi13]

First off, it sounds like your dr is gatekeeping you.  Playing "I have the power so I'm going to literally force you to be female.

Don't let her win!

You are strong!  Strong enough to have had THREE kids despite what your body is throwing at you!  I bel8eve in you and I'm rooting for you!

Find a clinic near you, and get an appointment.  Those weeks will go by quicker if you don't focus on the time.  Simply live your life until the date draws closer.  Eat, sleep, spend time with the family, watch movies, whatever you do in your normal life.  Don't focus on "X amount of weeks away."  Just live your life.

Feel free to vent/rant/complain/etc on here.  It's what this forum is for.  To keep each other sane during bad times and congratulate each other when things go right.

You got this bro.

Ryuichi

Sent from my SM-G975U using Tapatalk

[F_P_M]

I complained to my mother because she rang me while I was feeling sorry for myself and she made me an appointment to see the private gyno who diagnosed me with PCOS all those years ago.

I'm a bit nervous because he's a gynocologist and endo but he's very much a doctor who works with cis women. Still, he SHOULD theoretically be able to officially diagnose me with estrogen dominance which I have literally every dang symptom of and hopefully give me progesterone to try to level that off for the time being.

My short term plan is to try to eliminate the pms and see if it's masking other dysphoria or if relieving it makes me feel okay in my own skin.
I'm one of those people who has to approach everything with a very scientific manner so eliminating the pms which has made me so sick and miserable for over 20 years is step one.
Becuase it's difficult NOT to hate being female when ever since puberty hit you've been sick and in pain.
I mean dang, I used to miss so much school because of it. I couldn't function!

But it doesn't really explain my gender euphoria, the fact I always played "the boy" in games pre puberty or indeed my chest dysphoria buuuut it's easier to sell to people if I do this methodically.

so, i'm hoping this guy can get me some progesterone, that it'll not suck too much (eugh, progesterone) and it'll start to resolve the worst of the pms symptoms so I can reassess my feelings without this huge distraction making me want to tear my skin off.

I expect i'll come to the conclusion I still want T, I really can't see that changing but I might find myself a little more able to wait for it, rather than this desperation i'm feeling right now.

I also rang my gp about the bloods that were taken a few weeks ago but they insist I have to go in to "discuss" those which is tedious. I mean i'm pretty sure I actually understand my bloods better than my doctor does, because i've had most of my life looking at these results and learning what they all mean.
my gp has a tendency not to actually look at the interactions. Like, things will be within "normal range" individually but that hormone shouldn't be high when that one is high and that one shouldn't, at this point in my cycle be that low... and so on and so forth.
I just get told "it's all normal" and then I look and it's NOT normal, it's just the computer system only looks at the individual numbers, not their interactions or when in a cycle the test was run. *sigh*

Funnily enough I was actually talking to my father about hormones last night. About how testosterone can convert to estrogen and what free testosterone was and all that. He was surprised I knew this stuff and I was like "dad, i've had to learn this all over the years. I've had to fight for medical help my whole damn life!" and it's depressingly true.
Ever since I was 10 and puberty hit i've been trying to get help and answers and never really getting any.

I was diagnosed as having atypical PCOS (as in, my hormone levels were very low but the fsh/lh ratios were reversed and I had cysts so probably had it) at 19, 9 years after we started seeking medical help for how sick I was! NINE YEARS!
Apparently that isn't uncommon.

then at 24 I was told it wasn't pcos it was probably more like hypogonadism because my ovaries weren't working at all and the doctor though they were failing (they weren't, they just suck)

that doctor ran genetic tests too but I never got to see the results, I just got told I was XX and it was "fine" but honestly it's pretty dang weird to run a genetic test on someone just out of the blue.
I wonder if she saw something that made her question stuff. (apparently I do have remnants of the wolfian duct system which I dunno, is it weird that made me kinda happy to know? Kinda like "YES! see! I told you I had male aspects!")

and honestly I sort of feel like being told I had some kind of intersex condition would explain an awful lot. All these years i've been being treated and assesed like a regular female and doctors have come back all "we dunno, none of this makes sense according to our understanding of female bodies"
well, what if this ISN'T a female body?
would things suddenly make more sense if they stopped looking at it as if i'm biologically "standard"?

I've had test after test after test run on me, mris and ultrasounds and hysteroscopies and the most horrendeous hsg (it was hellish, I was apparently screaming so loud they could hear me in the waiting room. oops) and soooo many blood tests but it ultimately always comes back as "we don't know what's wrong with you so we're giving up"
I swear i'm at a point whre if I hear the word "idiopathic" one more time i'm going to scream.

yes, my entire 20+ years of illness is chalked down to being "idiopathic" which is doctor speak for "we dunno and can't be bothered throwing any more time and money at this"

And it's not just my hormones, my kidneys confuse them too (they like to periodically spill protein, freak everyone out and then magically stop doing it sorta all "psyche, scared ya!") my biology in general is apparently bewildering (I have a lot of body hair and other things that suggest high T in my system and yet when they test my t levels aren't actually very high at all, so don't explain my ability to grow a sparse and kinda crappy goatee and chest and belly hair). My body is just bizarre. I joke that maybe i'm actually an alien and that's why they can't work anything out.

Still, hopefully the gyno can run some tests with a little more depth. Another genetic test maybe with more scope? some new scans of my insides? I mean apparently my left ovary is really hard to find and really small so i'm kinda curious about what is up with that (IS it an ovary? is it functional? What's up with it?), a scan to confirm the huge lumps in my chest are indeed cysts as I believe they are (they feel like cysts).

I kinda came out to my dad last night over dinner too and he took it as well as my mother did which was nice. I was less worried about my dad as he's crazy super accepting anyway. But right now I feel like my parents are kinda clinging to this idea that i'll stick with a middleground of non binary and androgyny rather than full transition.

though dad did joke that I could larp as a werewolf if I get super hairy on T and I was all "HELL YES!"
aahahahahaha.

So yeah. Private gyno will cost a bit by my mother is using some money she was sort of squirreling away for me to pay for it and it's probably easier to start with a gyno, get the "female care" stuff sorted and then save up for Gender clinic or just wait for the NHS depending on how I feel.

thing is waiting is really difficult once you've uncorked that "I'm trans" bottle huh? But for my own sanity and the well being of my whole family, including my kids, I think taking things slowly and methodically is the best option. Even when I get T I think I want to start on a very low dose to test how it makes me feel (Hopefully my body won't freak out like it does with estrogen) and sort of go through a slower transition.
Once I find a way to fix the problems my ovaries are causing (get em outta me maybe?) then I should, theoretically, have all the time in the world to do anything else. It's just that right now, with them poisioning me steadily, I feel like my time is running out.
I already almost died last year, i'd really rather NOT have a stroke or something thank you body.

[Ryuichi13]

  Wow. 

I really don't know what to say but good luck.

Keep us abreast of what happens, okay?

Ryuichi

[F_P_M]

Thanks, also lol yeah sorry, I overshare.. a lot.
I suppose it comes from having so much private stuff just shared with every doctor since the age of 10. It removed any sort of concept of privacy relating to genital stuff pretty dang quick.

I thought I had a hangover yesterday but nope, it's time for my monthly cyclical headache. I had pain all yesterday and today my head still hurts but it's more a dull ache that might get worse as the day progresses and I start moving around.

My blood pressure last night was a rather concerning 144/108
FUN.

It's come down this morning to a still concerning but less immediately "oh god i'm gonna die" level of 122/98

I go back to my gp on thursday to discuss my blood results and my blood pressure. I assume she'll put me back on the beta blockers because really, they sort of NEED to.
Only reason I was off them is because the hospital took them off me when I was in with sepsis saying I didn't need them.
Well sure, I didn't need them at that point because my blood pressure was stupidly dangerously low because I had fricken sepsis! but it's crept back up to the levels it was a few years back when they first put me on the beta blockers.
Levels I was told were "stroke level" numbers so yeah, my risk of just having a stroke randomly is pretty high right now and that is quite frightening. It's no longer even hyperbole to say "my hormones are trying to kill me", they literally ARE.

Now apparently my headache isn't related to my blood pressure though. They tested that years ago when I was getting intense migraines and hypertension and they thought they were connected but after lots of tests they figured they actually weren't related the way they thought they were (as in, the hypertension was causing the headache).

But the fact I HAVE the headache suggests i'm due a period, eugh. just.. EUGH.
the only good side of that is it means I get a few days of reprieve from the pms. Genuinely I get maybe a week out of any cycle where I don't feel sick these days. Eventually I have no doubt that window will get smaller and smaller and smaller till there's no relief at all.

tomorrow is gyno appointment. I'm hoping he can just DO something without having to run tests i've already had bloomin' run. But we'll see.
I'm kinda anxious about how much it's gonna cost, it makes me feel guilty.

I hate being a burden, especially a financial burden so this sort of thing is difficult for me.

I'm really bad at accepting financial help.

fingers crossed I get some answers and some proactive steps forward though.

The more I think about it though, the more desperate I am to get these ovaries OUT. They are doing me no good at all, they need to be removed.

[Ryuichi13]

It's okay about the "oversharing."  Honestly, its all very fascinating, my Paramedic side is really interested in all this. 

But, I'd advise you to get back on the beta blockers ASAP!  You are way too young to have a stroke! 

It really does sound like you need a total hysto as soon as they can schedule you for one  Your problems sound horrible!  Idiopathic pretty much is doctor-speak for "I really don't know," so I don't blame you for not wanting to hear it said anymore. 

Hopefully you'll have a few days' reprieve of feeling like a regular person.  All this must be completely maddening!

See?  I knew you were tough!  If someone's offering to help you, let them.  Especially if its family.  Its what family is for, helping out when things get bad.  And what you've described sounds pretty bad to me.

Ryuichi

[F_P_M]

I admit i'm kinda.. wary about tonight's consultation. Gynocologists always kinda freak me out, I should be used to them but it never gets any easier.
I just hate the whole thing.
Still he is a very nice man (He giggled and jumped up and down in glee when I told him i'd managed to get pregnant 13 years ago so yeah lol)

I wonder if he'll remember me. I mean I doubt it, he must see so many people.

Still, i'm nervous there might be an internal and I hate internals so much.

I definitely need back on those beta blockers. I rolled out of bed this morning and took my blood pressure: 133/98
that is BAD for a just woke up level.
Especially given i'm not even 35 yet. *gulp*

I mean I did argue with the doctor at the hospital about it but they seemed of the opinion that my blood pressure was fine (nooo it's not)

My worry is that my hypertension, if they can't get it under control could really screw up my ability to transition. It makes everything a lot riskier.

[F_P_M]

Okay, had my appointment and this might be a bit tmi and triggery to those with dysphoria going bad so be forewared okay?

The doctor remembered me from 13 years ago when I last saw him, which was amusing and kinda cute.
he was delighted to learn I had gone on to have 3 children, but most distressed when I told him I had hypertension and high cholestrol (spelling is hard omg), two BIG risks with PCOS.

Anyway, he wants to see my blood results which I should get thursday and email to him.

But he confirmed what I thought. My symptoms are almost all down to too much estrogen, which apparently PCOS can cause as you don't make enough progesterone so estrogen goes craaaaazy and creates havoc.

Great.

I asked if removing my ovaries would help and he said no, it'd just be removing a symptom. The ovaries pumping out too much estrogen is a symptom, not a cause and the solution is to go back onto Metformin, a drug that's used to treat diabetes of all things, to deal with my insulin resistance and stop the domino effect.

Basically, PCOS is kinda complicated and if i'm remembering from like 14 years ago when I was diagnosed, what it does is cause a cascade of side effects that ultimately result in complete biochemical chaos.

He described my body as biochemically wrong which was sort of reassuring to hear. YES, yes it IS!

Then he did an internal which wasn't as bad as I feared, he's very gentle and has tiny hands lol.
I mean sure it hurt but not as much as I worried it would.

The tenderness I feel he confirmed was the gartner's duct cyst (a remnant of the Wolfian duct system that didn't dissolve) which I always thought was what it was and then he threw me a curveball by telling me my uterus was enlarged and "spongy", two things a uterus should NOT BE.

He thinks I might have Adenomyosis which is endometriosis inside the muscle wall of the womb (AIEEE) which causes tenderness (yep), bloating (oooh so that's what that is!) and as it progesses painful periods, painful sex, general just PAIN.

To confirm this he's asking my gp for shared care to do a ultrasound and potentially also a pelvic mri to confirm. If I do indeed have this, the only cure is a hysterectomy and lemme tell ya, i'm not gonna cry any dang tears over THAT.
I was like "that's fine!" and he said "well we'll confirm first and then discuss okay?"

So the plan going forward is to return me to Metformin which I took years ago and worked pretty well (the main side effect is nausea but it resolves after a few months. I mean it sucks, but it resolves. But it means I cannot drink alchohol, ever.... again. Yeaaaah, don't drink alchohol on met, it's a terrible idea. You take a few sips and then you throw up everywhere. FUN. I know this from experience)
the only reason I stopped taking met in the first place was becuase my nhs specialist scoffed at the treatment, insisted it was "an old fashioned treatment for the condition" and instead suggested birth control which only masks the symptoms and ended up making me sicker anyway.
but getting my private perscription was costly and awkward so I eventually stopped taking it anyway. The NHS back then wouldn't perscribe it off license, or least my doctor wouldn't.

since then well, it turns out the new NHS guidelines as of 2013 say Metformin CAN be given off license if the benefits are there. So yeah...

Whether my current doctor WILL is another matter, but if I remember rightly it's not actually that expensive to get the private script anyway compared to current NHS charges (it's £9 per item on the NHS and they tend to only give you a month at a time while it was £80 for 6 months supply privately, it was just hard to find somewhere that had that much metformin in stock lol)

So step one is email blood results.
step two, ultrasound and potential mri.
step 3, have my glucose and lipid profile done (ew fasting glucose SUCKS, I hate fasting glucose!)

then I should get metformin and if that's not doing enough there's a few more drugs they can suppliment with.

if I do have adenomyosis I get a hysterectomy on the NHS asap. Sadly I don't think they'll whip the ovaries out at the same time, drat.

I didn't quite manage to ask about whether testosterone therapy would change anything but the implication was hormones of any sort weren't the solution (least not to this problem) and even if I transition as I want to, it's likely i'll need to remain on metformin for the rest of my life to keep my insulin issue in check and stop the miriad OTHER side effects of pcos (that is, the increased risk of heart attacks, hypertension, stroke, multiple cancers not just of the womb and diabeties. ) Even without my ovaries and with testosterone in my system instead of progesterone and estrogen, those risks don't go away with treatment for the underlying cause, which the theory is lies in the pituitary gland.

So in a way it's sort of good news in that we have a way forward.
the bad news is the solution isn't as "simple" as just whipping out a few damaged parts.
but hey, one more pill to add to my daily regieme, I can handle that. I'll miss booze though (not that I actually drink much anyway).
I suppose I better drink the last of my very nice rum before D Day.

Hopefully my gp will agree to shared care so we can run these last few tests and get started on treatment.

Last time I was on met it made a huge difference so i'm hopeful it'll work again this time.
If it does, then I should be able to eliminate biochemical issues from my gender dysphoria and hopefully get a clearer view of what i'm feeling without this doubt of "is it just because my biochemistry is borked up?"

I don't think that's the case, but for sure it's clouding my ability to really view the situation clearly. So once it's all cleared up I hope i'll be in a better place both with myself and with those around me to say "okay, yes, i'm still trans" and be taken a bit more seriously.
Right now having the big ol' hormone disorder casts too much "are you sure it's not just becuase you're in constant pain?" doubt over things.

Still, interesting about the adenomyosis huh? I mean yeah i'd noticed I was tender there but it never occured to me it was something ELSE and not just lumped in with everything else wrong with me.
Huh, go figure.

[Maid Marion]

I read all that!   

It sounds like you have a reasonable path to take.  Wish you well.

Marion

[F_P_M]

thanks. I'm trying to remain logical through all this. Priority is getting physically WELL, then I can tackle everything else right?
Maybe that 2 year GIC wait is a blessing in disguise.

[Linde]

So the plan going forward is to return me to Metformin which I took years ago and worked pretty well (the main side effect is nausea but it resolves after a few months. I mean it sucks, but it resolves. But it means I cannot drink alchohol, ever.... again. Yeaaaah, don't drink alchohol on met, it's a terrible idea. You take a few sips and then you throw up everywhere. FUN. I know this from experience)
the only reason I stopped taking met in the first place was becuase my nhs specialist scoffed at the treatment, insisted it was "an old fashioned treatment for the condition" and instead suggested birth control which only masks the symptoms and ended up making me sicker anyway.

I am taking Metformin (the real big pills of it) for well over 20 years, and the nausea goes away very quick.  Who says you can't drink alcohol when on Metformin?  Nobody ever told me, and earlier in my life i drank quite a bit of the stuff, and have no signs of any liver or other problems from it.  I never threw up a single drink since I am on Metformin.  Are you sure it is  Metformin causing you to throw up, or is there another underlying condition you have?
One side effect of Metformin is, it helps you with weight loss (seems not to work well with me)!

[F_P_M]

I used to be on Met in my late teens and early 20s, the pills are huge right?
The nausea I found went away after a few months.
But alas, in my case I learned the hard way that drinking ANY alchohol, even small amounts resulted in "sober - puking" with no in between. One glass of wine and I was hunched over a toilet bringing my guts up so that's how I learned it's a bad idea to drink on it. Least for me.

Of course i'll probably still try the odd cheeky sip of rum because I love rum lol. Truthfully I don't drink much anymore unless i'm with my parents who drink quite a lot. But I do enjoy a little glass of wine or a small glass of good rum or port every so often.

I remember I did lose weight on it last time yes! Though I was also on the low GI diet at the same time. Which i'll likely have to do as well. Should be a bit easier this time as i've never really gotten back into those bad habits of eating sweets instead of meals and because we're gluten free (family problems with gluten, bah) there's far less cake and stuff lol. I'm just not sure what to do for breakfast though because all the nice gluten free cereals are sugary and I can't have bran because gluten, DAMNIT. I hate granola and oatmeal takes too long to cook and isn't great in summer when it's hot. So what the heck do I eat for breakfasts? Eugh.

anyway I see the doctor tomorrow, only looks like it's not my usual doctor but the other female doctor so... that'll be interesting. She's the one i'm not out to hah.

Doctor was all "it should stop the hiristuism too!" and I was like "hey, back off, I like my excessive body hair!" lol.

[Ryuichi13]

Dude, it sounds like things are finally coming together for you!  YAY!

Unfortunately, sometimes that's the thing about medicine.  You have to get the right doctor that has the correct knowledge.  And to have a doctor remember you after thirteen years. you must have left quite an impression on them!

I'm so happy for you that you found someone that is willing to work with you!  But, it might be best if you come out to this newest doctor.  It would help you in the long run.  Either way, congrats on getting a doctor that knows their stuff! 

You don't have quick oatmeal/5 minute oatmeal/microwave oatmeal where you are?  Have you checked your supermarket for it?  Maybe ask someone that works there.  Hopefully, it's not just a US product.

Pills smills.  Its all good if it keeps you healthy and (hopefully) pain-free, right?

Keep us in the loop, okay?  I'm sure I'm not the only one that's following your progress! 

Ryuichi     

[F_P_M]

well oatmeal only takes like 3 minutes to make but man, when it's early morning and i'm tired I dun wanna. I want to spend 20 seconds pouring stuff into a bowl and then eat it lol.
I'm tired and it's early man! I don't DO mornings

and i will keep you guys in the know. My doctor appointment is tomorrow morning so i'll get to find out how borked my latest bloods are. Should be interesting.
Is it bad I sort of hope theyr'e super borked so my gp goes "oh dear, we should listen to this specialist"

I'm totally gonna end up rattling though hahah. 3 Metformin a day, my zoloft, plus the beta blockers unless the met miraculously fixes the damage already done (I mean it might fix it by reducing the estrogen in my system but i'm  not sure)
rattling!

I'm a bit nervous about the scans though. I mean first of all transvaginal ultrasounds SUCK so bad, they're absolutely horrible and just super gross. It's like being violated with an apple product (seriously those wands man! they look like what would happen if Apple went into making sex toys!) and the fact they put a condom on it just makes it so much squickier.
I HATE IT.
More than a regular internal exam. I absolutely loathe and detest internal ultrasounds.
Also they hurt because they shove really hard to try to see things and you're all "do you mind?"

But also because if they do find there's this issue, that means major surgery and sure, getting this uterus outta me is not a problem. I won't miss it and it'd be lovely to not have periods or have to ever worry about pregnancy or anything ever ever ever again but it's still major surgery with a lot of risks associated and that IS quite scary regardless of how much i'd like this thing schlupped outta me.

I'm also kinda sad because I have to put transition on hold while I sort my health out and that's disappointing. Ultimately its probably for the best, but it's still disappointing to not have an easy solution so I could move on.

Still, it'll be worth it I suppose. Getting healthy is my priority. It just sucks it's taken this long to actually get help again, after so many years of "we dunno what's wrong, it's idiopathic, go away" or "well you have pcos, we won't do anything about it, just deal"

It's frustrating but it's also depressing. "female" problems are just so often swept under the carpet and completely ignored and it makes me quite angry to think how many people are getting just brushed aside like this and developing rather serious and life limiting problems as a result.
but that's medicine for you isn't it? A very "old boys" sort of club.
PCOS isn't even a female only condition, it's just they haven't really bothered to research it further presumably because "oh it's just ovaries" (which it isn't, the ovaries are a SYMPTOM, one of MANY symptoms.)
I honestly think we should go back to calling it Stein Leventhall syndrome, much less gendered that way and it doesn't suggest that it's entirely related to female reproduction. Maybe then doctors might actually take it seriously.

But I digress.

to be fair the nhs is just as rubbish with cis men, sending them home all "we dunno, tests are too expensive, come back when you're dying"

I guess that's what happens when the government doesn't fund your health system, it falls apart and people get hurt.

i don't mind having to pay for my meds, metformin is stupidly cheap anyway. But an MRI is like £700 which is ... horrifying and a hysterectomy would cost thousands!
we can't afford that!
We're still waiting for universal credit to kick back in after they cancelled our claim on us and stripped all our benefits except my carers allowance and eldest's Disability.

I hate waiting. Just eugh.. hurry up doctor! Agree to this plan so we can move forward! I need my meds!

[F_P_M]

okay, this might need to be moved over to health at this rate.

I got my bloods.

Also the gp wants me to go for an ECG to check there's no damage to my heart because of my blood pressure (oh wonderful) but doesn't want me to take betablockers yet. Say what? So.. she's worried about damage to my heart, but is all "yeah just wait and see"?
I'm uneasy about that.

I mean I HAVE betablockers here, I could self medicate if I get too worried but it seems wierd.

She's talking about referring me to an endo if the ecg is okay to confirm what's causing the hypertension. Lady we already KNOW what's causing the hypertension, it's called estrogen dominance coupled with high colesterol!
All known side effects of pcos!

BAH. the one time they don't shrug and go "yeah it's the pcos"
the ONE time.

Anyway, the ecg is a walk in thing so I think i'll wander over to the hospital tomorrow morning nice and early to try to beat the rush. I'll probably still wait hours though. I'll take a book. It's gonna be annoying.

She agreed to do a glucose test and the other bloods my specialist wants (his letter hasn't come through yet apparently) but that won't be till June 3rd because they have only one nurse for two doctor surgeries because their management is idiotic and thinks that understaffing is fiiiine.
*sigh*
Fasting glucose sucks, it's at 11:40 so i'm gonna be so hangry but then. Grrr.

Anyway, the blood results:

these were taken on CD 12, generally speaking they like to take bloods on cd 14ish because it's supposed to be "mid cycle" or they do it on cd 2-5 so they catch the very start.
This is cd 12 so close to the standard mid point.

T levels are LOW - 0.8 nmol/l
if it's under 1 they don't bother doing SHBG which annoys me because my T is often LOW but my SHBG doesn't seem to work so it's a high percentage of FREE t.
I've asked them to redo it with that SHBG regardless of how low the dang number is just to be sure because I know from experience that low t doesn't mean much, the important part is how much of that is free and how much is bound. - Notes say "normal no action" but for someone with PCOS and a lot of the androgenising side effects like hiristuism this is LOW t.

progesterone is LOW - <1 nmol/l which means it's so low they didn't even get a decent reading on it. This makes perfect sense, low Progesterone is a characteristic of pcos and estrogen dominance. - the notes say "routine dr appointment"

oestriadiol - 471 pmol/l - I think for cd 12 that's fairly excessive but i'm not actually sure. But it suggests to me anyway that i'm right about the estrogen dominance. - the notes say "routine dr appointment" which means it's not normal.

FSH is 3.8 (normal no action) however it's LOW for the point in the cycle it was taken.

LH is 11.5 (no action) but this shows what I mean about their system being dumb and not taking interactions into account. See, LH shouldn't be higher than FSH, that's not how it works. They should be 1:1 approximately, but my LH is 3x higher than my FSH, a classic PCOS sign that one. That's normal for me, but it's certainly not "clinically normal" What it means is I produce a lot of folicles, but I don't then ovulate properly so they sit, they die, become cysts. Hence "polycystic ovarian syndrome". These numbers look pretty normal for me

Prolactin - 269 mu/l which is apparently normal. (range is 102 - 496 mu/l)

TSH (thyroid) is 1.13 which again, normal. Because my thyroid is always normal and i'm sick of them testing it when I say I have hot flushes because it's not my damn thyroid! gragh.



So I have to send these over to my specialist, see what he says.

there's a few they didn't bother doing which is annoying so I have to get those done.
And I probably need the whole lot redone on cd 2 to get a better overview but who knows when that'll be as this cycle is probably a dud and might just not happen.

anyway, I was looking at the treatments for PCOS and aside from Met they also have two other drugs but both of them are anti androgens which is like.. totally NOT something I want in me. I LIKE my testosterone.

there's a real assumption from doctors treating me that I want to remove my excess body hair (er no, no I do not.) and want to feminise more and I find it pretty annoying and presumptuous honestly. I mean even if I wasn't trans, what if I was just okay with looking how I look? It's pretty rude to suggest to a person they need to change to fit some narrow standard you know?
All my life the fact I grow facial hair has NEVER been a problem, I mean damn, you just shave it off. It's not hard.
yet there's always this assumption I must look in the mirror and be mortified by it and really? even before I realised my gender identity it more amused me than anything else.
I used to joke with my cis male friends that I could grow a better beard than they could.
We used to joke that I was a Dwarf/hobbit cross breed because I had a beard AND hairy toes lol.
I fully embrace my Dwobbit-ness.

I LIKE that I have a fairly square jaw and body hair, that's what i look like, it's me and it's aspects of my appearance that have never caused me any distress. (boobs, they're the thing I hate)

Anti androgens just.. eugh no. Get off.

i'm not sure I want to come out to my specialist because i'm not sure how he'll take it because well, he's old and he's very much a "cis women treatment" sorta doctor. I'm not entirely sure ANY of these endo/gynos really understand trans care for transguys.
I'm thinking my best option right now is to go along with stuff up to a point, agree to the non feminising treatments that'll bring my hormones into check, get myself healthier and then hopefully, by then the GIC will have given me an appointment and I can switch care over to them for the last little bits. I just really want to avoid anti androgens, I have precious little T as it is! leave it alone!

But it is concerning because honestly gyno care for transmen is TERRIBLE. I mean it's really really poor. Even someone like me who's so detatched from their biology that I can just talk about it candidly and feel no dysphoria (I mean genuinely to me, talking about my ovaries is much like talking about my heart or my liver. it's just a body part, in fact if anything due to years of having to go through tests and such for it i'm super extra ultra detached from all of it to a point it's just routine.) and WILL seek out gyno care, it's still rubbish.
"womens" medicine in general is rubbish (ahhh institutionalised sexism, gotta love it huh?) but it gains an extra level of terrible when you don't present as female and don't fit into the little pink box all doctors seem to think all XX folk wanna be shoved into.

I'm concerned that if I come out fully i'll encounter the same situation I got with my regular GP. A sudden denial of treatment or this wierdness and questioning me at every turn. This bizarre attitude that being trans someone automatically makes me not have this biochemical disorder and health problems relating to my reproductive organs. I mean it's wierd. I WISH that just saying "i'm a man" would magically disappear my ovaries and womb but that's not how it works! I still have these things and they're not healthy.

It's concerning to me how many more hurdles are put in the way of someone who doesn't fit in the pink box. It's almost like they want us sick.
and that's unsettling.
Ultimately though, I don't think it's a conspiracy so much as just flat out ignorance and twisted thinking. This attitude that somehow I won't want to talk about my body and getting well because of the dysphoria. Sorry but ultimately, my health is waaaaay more important than me being uncomfortable talking about vaginas.

And ultimately? Dysphoria doesn't effect everyone the same way. I mean im FINE with talking about my biology and biochemistry. Some people maybe aren't, but that doesn't mean we should face a situation where we don't feel we can talk about them at ALL or seek help for them.

I still need gyno care and depressingly, I get the distinct impression that in order to continue to access it unhindered, I need to continue to pretend to be a girl.
Which sucks, but if wearing a dress gets me the damn meds I need, well so be it I guess.
I'll wear a sodding dress.

But i'm not taking anti androgens and they can kiss my ass if they expect me to agree to that. -_-
extra t is NOT the problem. Excess E IS
Can I have anti estrogen instead? lol. That'd be awesome.

Anyway, no closer to treatment. It's still kinda "we're gonna wait, do more tests, muck about and sit on our hands" which is frustrating but there's not a lot I can do.

I'll get this ECG tomorrow, see how much MORE stuffed up my heart is (I already had an ecg about 5 years back and they said I had bicuspid regurgitation but it was "mild", let's see if it's gotten worse thanks to being taken off the beta blockers shall we?)

and i'll send these blood results on to my specialist and see what he says.

But eugh.. the sooner I get the damn metformin at least, the better.

I'm not sleeping thanks to the hot flushes and such, which means i'm constantly absolutely exhausted. I'm tired of feeling sick all the time.

I was thinking about what my ultimate long term goal is and at this point, i'm thinking top surgery is a definite (I mean I HATE these things so much. I put a bra on because my sports bras needed a wash and it was devastating. I LOATHE how it looks and I just feel so uncomfortable going out like this. I really am not happy about it. I need more sports bras) but it's whether they can control my pcos effectively alongside hrt. I know there are a lot of transguys out there with pcos so i'm hoping it's gonna be fine and there's no problem with doing it. If anything I sorta hope it HELPS because it'd remove the biggest more difficult symptoms to manage, the nightmare pms, the cysts (by removing the ovaries) and the erratic periods.

I genuinely feel like that's the most natural state for my body to be in.

[Ryuichi13]

It really sounds like you have a better handle on what's going on with  your body than the doctors and specialists do.  It also sounds like you need to "play their games" until you get your PCOS treated and then transition, if I'm reading your post correctly. 

It sucks that gyno for transmen there is so bad, but maybe you should look into finding a clinic that deals with transmen.  Perhaps do a search for such a clinic while you're waiting (and waiting, and waiting...) so that you can get started on the other part of your healthcare.  Kill two birds with one stone and all that.   

Lucky you, so hirsute!  I've been on T for almost 2.5 years and still can't grow a decent beard!  Oh well, I'm patient. 

To be honest, I think that since all of this pertains to your wanting to transition, the Admins are keeping this thread where it should be.  I hope that things get taken care of for you, hot flashes sound terrible!       

I watched a British show on Netflix called 'Embarrassing Bodies,' and there was an episode where they asked women about their bodies.  Most of them didn't know what their genitals were called beyond 'lady bits!'  I was shocked!  Here in the US, most women can not only name all of the (main) parts, but when something goes wrong, they talk to their doctors about each and every symptom, and can often say "this is what it seems like it is," thanks to the internet.  In the US, we are taught to be "advocates of our own health care," especially when things are unusual, often going from doctor to doctor to help us figure out what's going on when something is wrong. 

Did you tell your doctor "this is what I think is wrong" after she didn't say "yeah it's the pcos"?  Maybe you should the next time you see her.  I think that her wanting you to get a ECG is probably a good thing.  Better safe than sorry when it comes to your heart and your blood pressure.  Have a baseline to work from, and go on from there. 

Oh, I'm glad to hear they have instant oatmeal there! 

Keep at it, it sounds like you know what you're doing!

Ryuichi

[F_P_M]

Lol it's not a decent beard, it's like 12 hairs but hey, it's a start.
My belly however is FABULOUS hahaha.

I never previously let it grow out because you know, it wasn't "feminine" but I have now and wowza, I never realised it was actually THIS furry ahahahaha. It's hilarious.

and wow, that IS depressing about those people. Some people are so clueless right? Though to be fair, I only know a lot because i've had to learn over the years. *sigh* Sadly, here in the UK NHS doctors get quite angry with you if you've been googling and discourage patients from doing so. I suppose they have a power trip or something. I've had doctors get really wierd with me for seeking a second opinnion or telling them something they SHOULD know.
They don't seem to much like explaining things that's for sure.

In other news, shark attack happened. And im in so much pain. I feel really fragile and tender which to be fair, isn't that much of a surprise given my abdomen is like.. full of blood.
But oh man, every cycle I think I forget how much this sucks and how gross I feel till it happens again.

The headache I usually get a few days ahead of time has hit at the same time too so i'm feeling pretty disgusting. I'm trying to psyche myself into having a shower. It's not that it's gonna be gross, i'm sorta used to the psycho shower scene stuff but more because my belly is SO tender the hot water is painful spraying on it and standing for any length of time is uncomfortable.
Also i'm shaking which is making things really irritating. This happens, i'm kinda used to trembling from pain and blood loss (now that's depressing huh?) but it's irritating me because it's making manual dexterity a bit tricky and when I get up I tremble and then I feel super vulnerable walking.

ARGH i hate it.

thankfully the painkillers have kicked in but it means I only get a brief window. Sadly my body processes pain killers really fast. I get like an hour and then like a switch is flicked, they stop working.
it's really annoying.

I suppose I could take the buscopam if it gets too bad. That stuff is potent.
I used to actually be totally dependent on it back in my teens when I was utterly crippled by my cycles. As i've gotten older they've become more tolerable but it's sorta like saying cutting off a foot isn't as bad as cutting off your arm.
It's still bad, just different bad.

I should probably take this painkiller haze oppertunity to go get clean.

But this means I didnt go get the ECG today. I'm in no state to travel by public transport to the hospital and sit for hours waiting my turn. I'll go monday when i'll hopefully be feeling a lot less disgusting. I'm not overly coherent to be honest, i'm having trouble focusing. Part of that is because i'm in pain and the other part is because of painkiller haze. The more painkillers I take, the more incoherent i'll become so yeah, it's unwise to go anywhere alone.
Husband was trying to ask me questions earlier and I honestly haven't a clue what he wanted from me. I just grunted at him and he gave up trying to get any sort of answer out of me.
This happens a lot, especially when I have a headache because I cease to be able to form sentences.
And it's weird because I can still type, I just can't form verbal sentences or process what people are saying to me. Must be a different bit of the brain.

Right, shower. I'm braving a shower. 

[Linde]

  Here in the US, most women can not only name all of the (main) parts, but when something goes wrong, they talk to their doctors about each and every symptom, and can often say "this is what it seems like it is," thanks to the internet.  In the US, we are taught to be "advocates of our own health care," especially when things are unusual, often going from doctor to doctor to help us figure out what's going on when something is wrong. 

Ryuichi

Many medical professionals in the US wish this would be the case.  it is rue for patients with an elevated level of education (either self taught or acquired in school).  Many females, specifically those from the bible belt states, don't even want to admit that they have "female parts"!

[F_P_M]

My head is throbbing.
and I feel nauseated.

isn't that just wonderful?

I want to claw at my own face it hurts so much, i'm so tired of this.

I need that dang metformin, these "please just gouge my eyes out" headaches are intollerable.

I'm angry with my doctor for allowing me to just suffer through this for so many years, shrugging and going "oh it's idiopathic"
It's NOT and there IS a treatment, they were just too lazy to find it.

My mood is all over the place as well. And I hate that, I hate not feeling in control and just sort of spectating your body. It's horrible.

welp there goes my weekend. I'm likely to have this headache for the next few days and be unable to function as it gets worse and worse.
Damnit.

I can't keep living like this, i really can't.