Feeling hopeless

[F_P_M]

I'm having a rough time right now.

I mean firstly there's my health issues. It's getting worse and worse. I got literally 3 days without pain this cycle. I had a headache, a severe headache for about a week and then a few days of feeling not awful and then the pms kicked in again, the low grade headaches started, the slight nausea is begining, my chest has swollen up and hurts so badly I can't even touch them without wincing, down below is tender and sore and swollen up which then pulls on my scars in that region which leads to THOSE hurting so badly I can't sit comfortably.

I just feel so unwell.

I can't stop sleeping either. I'm tired ALL the time. The exhaustion is just unreal.

I feel sick constantly. Chronically and unendingly sick.

and that messes with my mental health so despite my antidepressants the depression is creeping in, that feeling of helplessness, of hopelessness, that feeling that things will never ever get any better.

I've had these problems ever since I hit puberty and over the years i've had to fight endlessly for treatment, to be listened to, to actually be acknowledged and still, twenty four years on, i'm no closer to being well. In fact, if anything, i'm even worse.

Every time I seek medical help the circus starts up again. The endless hoops I have to jump through, the hurdles I have to climb over and ultimately it always ends up the same. I subject myself to endless tests, being poked and prodded like a slab of meat and they come back with a shrug, tell me it's "idiopathic" and send me home with painkillers or hormones that make me sicker.
and so it continues, around and around and around till I give up because i'm too exhausted to continue to fight.

And every year or so it restarts, I get the energy or desperation to seek help again, the whole thing restarts and again i'm defeated.

I just feel like nothing ever changes. Nothing ever gets better. Every step forward is three steps backwards, every time I think we might have a solution a dozen or more hurdles are thrown up, more walls are erected to prevent me accessing that solution.

And i'm genuinely too tired to continue.

I have a doctors appointment on monday, two actually. one with the nurse to have glucose and hormones done AGAIN for the upteenth fricken time and one later in the day to try to convince my gp to give me an ultrasound and perscribe metformin.

But they won't give me metformin on the NHS because they suck and my private specialist wants all my bloods first so it's more waiting, more enduring, more wanting to just curl up and not wake up again.

What is happening to my body goes above and beyond anything i've ever heard about PCOS. PCOS sucks but it's not supposed to make you this phsyically ILL.
It's been allowed to continue unchecked for too long and it's already done irreperable damage. I've got hypertension, i've got high cholesterol, I'm at a huge risk for type 2 diabetes and heart disease and stroke.
My body isn't just struggling, it's shutting down.
I feel like i'm dying. Very very slowly, but i'm certain this will kill me.

I can't continue like this. I just can't. Life has become intollerable. Existance is untennable.

And I can't help but fear that even WITH the metformin it won't help. That even IF they finally decide to give me T it won't help.

I just want to feel well. To be comfortable and happy and healthy. I don't actually remember what it feels like to be comfortable in your own skin, to be healthy and happy to be you. It's been so so long, I can't remember it.

Right now i'm at war with my own body. I can't even HIDE these feminine traits right now because the swelling means my usual sports bra binding technique isn't working at all and these damn things show up even under multiple baggy layers and the pain down below means I can't wear anything with a seam because it irritates very swollen very sensitive tissues so I have to wear skirts.
and it's bad enough to feel so SICK, but to be forced to present in a more feminine manner because your body is betraying you is just utterly cruel.

and then to top things off my husband is getting... wierd with me.
He's never been great when it comes to me needing emotional support, he says it "stresses him out" and basically shuts me down so I feel like I can't talk about it.
But he also tenses up when I talk about my hopes and the exciting things T does.
And I mean I get it, it IS a big deal to have your wife become your husband but I just wish he'd stop giving me such mixed messages.
He's still physically affectionate, but then shuts down when I talk about stuff.

and he admitted a couple of days ago he wants to talk to a therapist because he's "not processing this"

and so on top of my health issues im panicking thinking i've destroyed my marriage as well. I feel guilty and i'm terrified he's going to leave me.

It was our wedding anniversary yesterday. We've been married 10 years and I fear he thinks it was all under false pretenses.

I can't help but wish i'd worked all this out earlier, rather than waiting a decade to drop this bombshell.

but I don't know how to handle this, how to support him when I need support myself and have nobody to lean on at all.

I feel like i'm fighting everything alone, and i'm genuinely not strong enough to keep up that fight solo.

I can't keep living like this, but at the same time, I haven't got the strength to climb all these hurdles and make a difference.

the universe just keeps throwing more and more in front of me and I can't do it. I can barely get out of bloody bed, how the hell am i supposed to fight for my health and marriage?

[Vethrvolnir]

Hey. I'm not native english. So i feel i lack the words for supporting you as you deserve.

Hold on. And i think. You do not  need to support your husband. Just check that he is  doing the right things to support himself.
Hand him contact info  of support groups. Then it's up to him. I'm in the same marriage situation. My husband has a tendency to hide from problems. That is his problem. It is what it is.  There is no way of turning back. So the only thing is to go forward and deal with it. Loving behaviour is a good  sign.  Showing affection is good.
You have your own load to carry.  take good care of yourself.
If your cycle is causing as much trouble as this .... i imaginethat having the ovaries removed and starting on T would be such a relief. It should work?  I hope you can get sonething soon to relieve you of the source of these bad  symptoms.

[LordKAT]

Have you been checked for endometriosis?  Worth asking about anyway. As to the husband thing, I can only think that letting him see a therapist, preferably and lgbt friendly one, would help both of you. It is a sudden  thing for him and understandably difficult. He may not even be sure how to support you without losing himself.  It is difficult when medical people can't sort out what is wrong. I have/had many of the same issues. Waiting when you finally feel like you can be yourself is also difficult. and pain is no fun at all.

[MeTony]

Have you thought of doing a hystorectomy? I did. All the pain and connections to womanhood, such as periods, disappeared. You could ask for it for medical reasons. I did. I was in labour pain every time I was on my period. I could not move and barely breathe.

When life gives you >-bleeped-< up to your neck, you can't start digging aimlessly, you need a plan. Start digging close to you, before you dig further away.

That means you are your closest person. You need to see to your needs first. You can't give emotional support to your husband if you are neckdeep in >-bleeped-<. Start with one thing. What is most important to YOU? Transition maybe you think? Go even closer.

Your physical health. It affects your mental health. Write down your physical problems. Find a solusion and go for it. For example, bad pms and painful periods. What is the solusion? Surgery or pills? What fits your life immediately and in the long run?

Edit: accidentally sent the message.

I did this. Before I could go for transition I had to be mentally stable and have treatment for my physical health. When all that was going on and my mental health stabilized there was noone to ignore my need to be a man. They had nothing to point at and say "no...this is the cause"

It can take time. But there is no quick fix for a healthy life mentally or physically. Even transition takes a long time. But eventually you will get there.

Don't give up. Start digging where you stand.


Tony

[Ryuichi13]

Wow F_P_M, that all does sound pretty bad.  But you've gone through the physical stuff before.  Go get your blood drawn by the private doc, hopefully they'll start you on the road to better health.

If your husband is wanting counseling, then it means he wants to understand you and your being trans.  That's excellent!  Realize that you have understood that you were trans for a LOT longer and have come to understand your situation.  It sounds like the idea is new to him, and he needs to process it.  If he shuts down whenever you mention it, it probably means he's still processing it.  Having your partner come out as trans was more than likely a shock to him.  Start looking around to see if there are any support groups for spouses of trans people near you that he or maybe even the two of you can attend.  Or a gender therapist that can help both of you understand your situation.  It could help. 

You probably took a long time to understand that you are trans, so it isn't exactly "springing" it onto him, right?  How can you tell him if you yourself didn't understand?

I know its not what you want to hear, but transitioning takes patience.  There are gatekeepers everywhere, even if you are rich.  Everyone wants to "make sure it is the correct decision for you to transition," so it seems like they throw up roadblocks in order to make it more difficult.  If you quit, it seems like the cis world thinks, "they're not serious, its just a phase."  Of course, they often couldn't be more wrong.

It sucks that you have to wear skirts.  Have you ever thought of getting kilts instead?  There are utility kilts made in one color that are made for the general public that you can find online.  That might alleviate some of your dysphoria.  Or try finding baggy sweatpants to wear instead.  Get them at least two sizes larger than you would normally  wear.

You are a pretty tough dude!  I know it seems bad right now, but you can do this.  If nothing else, you have your friends here on the forum rooting for you and giving you advise.  You're never alone, even if it seems like it right now.

You can do this.  Just keep on moving, one step at a time.  It gets better.  *HUG*

Ryuichi

Sent from my SM-G975U using Tapatalk

[F_P_M]

Okay answering questions:

Yes there is some thought it might be endo. My specialist said my uterus was "spongy and enlarged" and thinks it's Adynomyosis (sp?) which is basically endometriosis but INSIDE the muscle wall of the uterus (AIEEEE). I need to convince my gp to do an ultrasound to see if they can confirm that, but yeah, uterus arent' supposed to be spongy and swollen, apparently they're supposed to feel flat and kinda smooth on internal palpatation (or so my specialist told me). Mine is most definitely neither of those things.
The only cure is a hysterectomy which i'm mostly okay with, just a bit scared of the potential risk to bladder function. I know it's a low risk especially if they retain my cervix but it still scares me.

But if I have this, it's quite likely there's endo elsewhere as well. My fear is that's what's causing the tugging pain, that maybe there's an adhesion. Endometriosis is super sticky and it glues everything together (ew)

As for removing my ovaries, i actually did ask but my specialist said it would be removing a symptom, not addressing the core problem. YES, it would relieve my symptoms, a lot. But it'd also require me to be on lifelong HRT which is pretty major, especially as I don't know yet how my body will take testosterone (As I said, i'm SUPER sensitive to hormones, well female hormones and i'm actually banned from taking estrogen containing anything now because it does bad things to my heart and blood pressure so yeah... )
So while I would rather like these things outta me, I need to be sure my body can actually tolerate T first.

Thing is, my ovaries are horribly cystic. Well the right one is, the left one is much smaller and really hard to find on ultrasound so i'm not actually sure whether it's functional. I've never really had a clear explanation of what's going on in there. Righty is very enlarged and more cyst than ovary at this point, it hurts a lot. Neither of them actually work properly anyway.
I'm subfertile. Not infertile completely because SOMETIMES they will sporadically produce an egg but like 75% of the time they flat out don't work. All they seem to do is get cystic and pour estrogen into my system. Eugh.

The stages as I understand them are get bloods, wait, get ultrasound, wait. Get metformin to correct the catastrophic cascade of issues thanks to my broken biochemistry (i've been on metformin before, it makes you nauseated as heck for a few months while you adjust but it did seem to help. I only stopped taking it because my NHS specialist convinced me to. I wish i'd ignored that cow).

I can't take birth control because of the estrogen and pure progesterone might help but my gp got wierd about a mirina coil and doing any gyno stuff after I came out to her to get a referral to the GIC. and then my specialist said that with my internal problems including the duct cyst and generalised pain I have constantly inside coupled with the spongy uterus a coil might not actually work and be very difficult to insert anyway. (and they won't knock me out to do it which is another "hell no". I'm still traumatised from the last time they did something that involved jacking open my cervix and inserting things. It was absolutely nightmarish)

The added complicating factor is that with progesterone, if I stop taking it for whatever reason I borderline freaking hemhorage. EEK.

It is uh... not fun.

Put simply, I do NOT react well to female hormones at all.

as for skirts. I put one of my old favourites on and I don't feel TOO bad. I mean, I don't feel as good as I do in my usual jeans and tees but I don't feel massively uncomfortable with wearing it. Though to be fair I am only slouching about the house feeling sorry for myself.

I'm cramping, only mildly but it's enough to make me feel ick. I'm also really really bloated up.

PMS shouldn't make you this unwell. it's utterly ridiculous and i've been putting up with it for years. Nobody ever listens. You're so ignored when it comes to "female medicine" and it's just so exhausting.

And because i'm in pain and already feeling massively emotional because my hormones are crazy and hijacking my damn brain, I have zero resilance to anything. I just want to curl up and scream and cry.
And that's just embarrassing.

Last week I had a solid plan moving forward but then pms hit me and my energy levels evaporated and I just... eugh. I just want my life back you know? this has consumed my life for so long, taken so much from me. This hormonal disorder cost me so much of my education, it's the reason I didn't get the degree I wanted, it's why I started drinking heavily in my late teens. I can't work because of it. I can't do anything. 3 weeks out of 4 i'm just too ill to function normally. I either can't sleep, or I can't wake up. I end up emotionally frazzled, i'm in pain, I can't deal with being touched or people being near me. I end up with headaches so severe I want to puke, sometimes I get an aura that makes me blind in one eye for a bit before smacking me with a mallet of pain and knocking me out for days. I get hot flushes, I get cold flushes, I have nightmares because of the hot flushes. I sink into cyclical depression that leaves me even less able to function.
It's consumed my life and it's taking more and more and more every day.

It's not WHY i'm trans, but it sure as hell doesn't endear me to this body or this sex. It's made the need to get OUT far more urgent. I used to be able to just cope with being a "male brain in a female body", with the social affirmation I got from my peers. It used to be enough. Mostly anyway. I learned to ignore the physical dysphoria. But when your body constantly hurts it becomes increasingly difficult to ignore bits of you you always preferred to ignore. I can't ignore my bust when it's SO painful. I used to be able to just like.. pretend it didn't exist to make myself feel better, but it's all swollen and painful and that's now impossible.
I never had much of an issue with "downstairs" but as it's become increasingly painful it becomes more and more difficult to just accept it.

My hormonal issues aren't WHY i'm trans but they've made dysphoria so much more painfully acute. And the way it's accelerating and just getting worse and worse and worse with no sign of easing up, it makes me feel like I really am on a timer here. I can't keep living like this. Every cycle is worse, every single month is harder to cope with. I don't know how many more I can take.

[MeTony]

I had no bladder problem. They removed my cervix too. Dr said I don't need that part. He said it was just an unuseful piece with a risk of cancer.

Demand a full body checkup! Ask if a low controlled dose estrogen is dangerous for you if they remove your ovaries. As it is now your estrogen levels go up and down if I understood you right. That will give you hot and cold flashes.


Tony

[F_P_M]

yeah my cervix generally doesn't bother me and i've read that it's generally a bit less risky to just leave it if it's not causing a problem. I mean smears suck but eh. There's worse things.

My aunt had awful trouble after her hysterectomy which has always made me a bit nervous. Poor woman, they screwed up SO BAD.

I dunno what my estrogen levels are doing, beyond saturating my system. My hormone profile suggests i'm not producing much if any progesterone to counter it and my T levels remain as low as they ever are (so regular ol' female levels) so it's just estrogen running riot in there unopposed.

Thing is, they DO tests, then they come back with nothing and so they shrug and wash their hands of me. That's what they always do. I've had so many tests run over the years, it's ridiculous. I don't think there's a bit of my body that has NOT been poked, probed or scanned.

Frustratingly, whenever I mention the hot flushes they fixate on my thyroid. It's not my damn thyroid.
and then they go "uhhhhhh we dunno then" and i'm like "seriously?"

It's not just that my doctor is crap, i've had this going on for over 20 years with so many different doctors. They either flat out don't believe me, don't care or can't be bothered.

My head hurts and i'm getting to "can't actually process language" stage of my headaches where I can type and read just fine but I can't comprehend what people are saying to me and can't form articulate sentences.
Euuugh.
And people keep asking me questions or trying to talk to me and i'm like "go away, brain not working!"

[Lexxi]

Hi F_P_M,

I won't ask you any questions hon, and you can ignore this til you feel better if you want. But I just want you to know that my heart is breaking for you. I have a physical disability that causes tremendous pain too so I know where you're coming from. Hang in there though because you have all of us pulling for you.

I did want to add that I think it's extremely nice that your husband wants to talk to a therapist. You must actually have a good guy there because I can tell you from experience most men refuse to talk to any kind of a therapist. I think they're born with an innate fear of them or something. It's just ridiculous. You're husband sounds as rare as a unicorn maybe. You should count your blessings.

Ok I'll stop for now. You hang in there dear,

xoxo
Lexxi

[Ryuichi13]

I'm no doctor, but I'm beginning to wonder if getting a complete hysto and going on T is the solution to your problem.  Ask what would happen if they did that the next time you go see a doctor.  Maybe you should go on and "get your bloods, wait, get ultrasound, wait, get metformin" like you said.  Anything to help you feel like you're working towards your goal.   

Its okay dude, we're here for you.  Do the things you need to do in the order that you need to do them in, and go relax.  We'll continue to listen to you and give what little advice and positive energy we can, okay? 

Ryuichi