Massive tumor ruining my life and PTSD

[KuriGohan&Kamehameha]

I genuinely see no point in living if I have to endure chronic health conditions and poor socioeconomic circumstances. It always gets worse, the older I get, because my body is worn down and has endured so much stress during my lifetime.

After years of having IBS, my symptoms suddenly got worse. The cherry on top of the shit pie. Keep in mind, I've never had any issue with my period or anything like that, hormone tests were always OK, so I never thought it could be related to the reproductive system because none of my symptoms matched typical presentations of those conditions.

After experiencing some of the most horrible pain I've ever felt in my life, I got referred for an MRI because I refuse to have anything internal like an ultrasound. This sort of thing is already so hard for me, because my PTSD only gets worse with time, not better, and anything medical is a trigger for me.

I was assured beforehand that if I wore cotton clothing, I wouldn't need to undress. Well, they lied, and the woman just shoved a curtain closed and told me to strip down and wear what wasn't even a normal gown, but something more akin to a shopping bag. For this MRI, they have to use a type of restraint to keep you from moving during the scan, so I was strapped down and very uncomfortable because I felt really exposed.

For the entire duration of that scan, I was sitting there thinking about awful, traumatic things that had happened in my life, then suddenly the technician stopped the scan and frantically said that I needed a contrast injection. They refused to say what they'd found that would require further investigation, but I already knew it was bad.

I have poor circulation, but am usually able to mitigate a bit of the pain from blood tests by drinking lots of water beforehand. For this procedure though, I'd been fasting for hours and they wouldn't get me a glass of water. The tech preparing the IV stated matter of factly that this was going to hurt. I begged them to to come back with a smaller needle, they ignored me and proceeded to keep stabbing and digging the needle in my arm while I was howling in pain. I was in so much pain that I started sweating and jerking all over from this woman repeatedly fishing the IV needle in my arm.

Having IVs and feeling something flood into my body already makes me feel bad, but that was the worst experience I've ever had. I nearly cried, because I was strapped down and couldn't do anything to stop it. When she yanked the IV out, I saw so much blood and felt incredibly ill.

Just when I thought this nightmare was over, on top of the sleepless nights I've had for nearly 2 months now due to extreme pain that these doctors won't give me any painkillers for, I got the radiologists report saying I have a massive grapefruit size tumor on my ovary that's septed, unlikely to be cancer due to me being in my early 20s. I have multiple cysts and small tumors all over my reproductive organs as well.

The outcome of this will be an invasive surgery, my worst nightmare. I'll likely lose my ovary due to the size of the tumor. I didn't plan on birthing biological kids myself and am strongly opposed to that notion, but this essentially seals the deal that I'm never going to be able to have children, because even in the best case I'll likely have to take birth control forever now to stop more cysts. The thought of even having a consult with a surgeon and being forced to do medical tests makes me feel disgusting. I don't consent but I am FORCED to.

Throughout my life, I've been told it gets better. That eventually my PTSD will go away and I will stop "being irrational" and being afraid of doctors. I've had people tell me that I should not be bothered by being hurt by medical staff, if it "saves my life." After having chronic fatigue for years and the incurable brainfog accompanying it that prevents me from doing anything meaningful or worthwhile since I can't work a 9-5, I don't see the fucking point.

I've been told that since I don't have a family, go out and make my own. Because I was a victim of child abuse and neglect, I'm told the only way forward is to get married and have kids. But I have no value as a partner since I can't bring in money, especially not now that I definitely am not able to conceive. I'm disabled by autism, and chronic fatigue, my spine is not in good shape, and now this massive tumor is occupying my ovary and crushing my bladder.

Keeping someone like me alive who desperately wants out, who has wanted out for years, a decade now even, is so cruel. Even moreso when I have PTSD surrounding medical environments and I will be forced to have invasive surgery. I pray every night that I will die in my sleep or get the courage to drink the salt.

 

[FuneralCry]

That sounds really horrific what you are going through, I find it so awful how this existence can torture people in so many ways with unlimited potential as to how much they can suffer. There really is nothing fair about any of this and your feelings of so desperately wishing to leave are understandable, people should stop saying forced optimism like 'it gets better' when they have no evidence to support it, I mean what do they know. I'm sorry that life has treated you so cruelly.

 

[wait.what]

Jesus Christ, that's horrible.

Forgive me if it's a rude question, but how is it they can force you to have these tests and procedures? Is someone acting as your legal guardian?

 

[whatevs]

It's really saddening how fate piles up shit on some of us, with everything you already had you really didn't need this.
Purchasing the WinRar license seems like something that is out of your grasp once too much is thrown at you all at once.

 

[Rational man]

Can i ask if the doctors have given a prognosis on your condition?

 

[http-410]

I probably can't contribute anything useful, but I am sorry that something like this happened to you. It's not just the diagnosis, but also the staff's brusque treatment of you, the medical treatment itself, the miscommunication (the undressing) and probably other aspects.

That you decided to have an MRI in the first place because you didn't want anything internal, I can well understand. That would be a nightmare for me too (and is one reason I don't do such exams in the first place) ... I can also relate to the situation with the injected contrast and the feeling of being exposed.

Once when I was injected with contrast, it felt quite cold, and I panicked (also due to being (s)trapped in a noisy tube) as it spread further and further throughout my body. Another time I got so panicky that after they pulled the needle I was bleeding unusually profusely. So I have at least an inkling of how you must have felt with the MRI.

Would it be possible to ask the doctor for a sedative before future MRI appointments? There are also MRI machines with an open design. From what I understand, you don't have claustrophobia, but I think at least it can't hurt. Maybe there are doctors in your area who work with such equipment? Maybe an open MRI and/or a sedative would at least ease the tension.

If I were to decide to have treatment, the only thing I could do would be to somehow make this as bearable as possible. I would say up front before any more treatments that I had a panic attack during the last treatment and ask if and how they can accommodate me with that. While I can't interpret exactly whether you had a panic attack, I think most doctors can relate to that more than symptoms they can't attribute to PTSD (due to lack of knowledge). I would also say that I had pain during the last treatment. Maybe with that prior knowledge they can be more careful with you.

Are there any treatment providers you can talk to about this, including pain meds? After all, you have proof that you have tumors. It makes me a little baffled that the doctors didn't give you pain meds with this tumor size.

 

[WhiteRabbit]

I'm sorry this is happening. I'm on this site due to fucked up medical shit, and I understand where you're coming from. It really wears you down, constantly receiving more bad news about your health.

 

[BeansOfRequirement]

Stay blessed. Gratitude is key.

 

[Pluto]

I've been told that since I don't have a family, go out and make my own.

If my experience is anything to go by, it really doesn't work that way. People who have supportive families and healthy upbringings seem to quite naturally gravitate towards having families of their own. They are in a stable position to begin with, have been steered towards reasonable careers, and enjoy ongoing support at many levels - financially, emotionally and practically (such as grandparents looking after a child). My biggest mistake in life has been fighting to compete with these people despite having none of these privileges.

Implying that procreation is a solution to social isolation is dangerously ignorant by failing to account for the long list of additional challenges caused by family abandonment. This can include physical limitations, loss of stamina, psychological distress, poverty, employment difficulties, less stable relationships and of course suicidal ideation. It hurts me greatly as I love children, but there's no denying that it is a recipe for disaster and violates every ethical standard.

The tragedy here is having to battle masses of ignorant people offering absurd 'solutions' in addition to feeling alone in dealing with serious physical pain and emotional despair. Nobody is willing to engage in a proper discussion about how to handle chronic quality-of-life issues.

I've always enjoyed your intelligent and thoughtful posts. I wish I could take away your pain or offer some sort of solution to this spiraling situation. But the best I can do is remind you that you are not alone in this. Wishing you the best always.

 

[locked*n*loaded]

Like the other poster, I just don't understand how these medical people can force any medical procedure on you without your consent? I'm so sorry you are going through all of this. I can't imagine how horrific it is for you.

 

[LaVieEnRose]

I'm so sorry. Your story is heart-shattering, not just this but other things you have shared. Despite being considered "society's healers" the medical field is so downright insensitive. Among other problems I developed s health problem the physical and psychological effects of which I have been dealing with for 8.5 years and will continue to do so for as long as I live. It was hell when I tried to seek medical treatment for it (fruitless now).

 

[KuriGohan&Kamehameha]

Jesus Christ, that's horrible.

Forgive me if it's a rude question, but how is it they can force you to have these tests and procedures? Is someone acting as your legal guardian?

Legally I don't think they can force specific things, but euthanasia is illegal and if you're a non-elderly person your wishes won't be respected because the default assumption is that everyone wants to live and would consent to life saving treatment.

As much as I wish I had the option to just let this thing kill me, I'd probably die slowly and painfully from sepsis or something like that and wouldn't be given the option of palliative care. I'd be forced to have treatment and surgery simply due to my age. Consent seems to be an illusion of smoke and mirrors when life threatening ailments that won't outright kill you are involved.

Not to mention, my partner would leave me, and I have no one else on this earth. No family or no one to help me or look after me. He already said if I don't have surgery, he is leaving me, and I do not have a choice when it comes to ending my life. I'm forced to live, no matter what.

It's really saddening how fate piles up shit on some of us, with everything you already had you really didn't need this.
Purchasing the WinRar license seems like something that is out of your grasp once too much is thrown at you all at once.

Hate to see that things haven't been looking up for you either, I was really hopeful and wanted to respond to your post about leaving the forum and to congratulate you for finding a meaningful relationship out there, but have just been in too much pain and foginess to articulate myself most of the time.

If I could press a magic button and expire my lisence, I would do it in an instant. It's the real risk of more pain and suffering that puts me off using the method I have, and it deeply pains me that I don't really have the ability to snap my fingers and vanish. There's a non-negligible risk of failure that haunts me.

Can i ask if the doctors have given a prognosis on your condition?

Probably not cancerous according to the radiologist. I haven't seen any doctors since. I think it wouldn't kill me outright though, unless I get sepsis or ovarian torsion from all of the tumors and cysts.

I'm sorry this is happening. I'm on this site due to fucked up medical shit, and I understand where you're coming from. It really wears you down, constantly receiving more bad news about your health.

I've seen a lot of your posts involving your health struggles, and I really feel for you. After awhile, it becomes more than one person can reasonably handle, especially if it's chronic, mysterious, or has no cure. My youth has been wasted by accusations of mental illness from doctors in regards to my symptoms, trauma caused by medical staff, and then outright being told that there's nothing I can do about Xyz problem and to be more resilient and just live with it. I don't think people can truly understand unless they're in our situation.

I'm so sorry. Your story is heart-shattering, not just this but other things you have shared. Despite being considered "society's healers" the medical field is so downright insensitive. Among other problems I developed s health problem the physical and psychological effects of which I have been dealing with for 8.5 years and will continue to do so for as long as I live. It was hell when I tried to seek medical treatment for it (fruitless now).

You're right about that. Although I know many of them have good intentions and want to help, most are afraid of liability and risk, so they will prioritise their own ego over what patients actually are comfortable with.

I enquired at some places about getting a video or phone consult to discuss my problem, explained the MRI findings, and they outright dismissed my concerns and made me sound like a delusional and crazy person when I explained that I cant do certain things due to trauma. Sometimes the supposed cure is worse than the disease..

I probably can't contribute anything useful, but I am sorry that something like this happened to you. It's not just the diagnosis, but also the staff's brusque treatment of you, the medical treatment itself, the miscommunication (the undressing) and probably other aspects.

That you decided to have an MRI in the first place because you didn't want anything internal, I can well understand. That would be a nightmare for me too (and is one reason I don't do such exams in the first place) ... I can also relate to the situation with the injected contrast and the feeling of being exposed.

Once when I was injected with contrast, it felt quite cold, and I panicked (also due to being (s)trapped in a noisy tube) as it spread further and further throughout my body. Another time I got so panicky that after they pulled the needle I was bleeding unusually profusely. So I have at least an inkling of how you must have felt with the MRI.

Would it be possible to ask the doctor for a sedative before future MRI appointments? There are also MRI machines with an open design. From what I understand, you don't have claustrophobia, but I think at least it can't hurt. Maybe there are doctors in your area who work with such equipment? Maybe an open MRI and/or a sedative would at least ease the tension.

If I were to decide to have treatment, the only thing I could do would be to somehow make this as bearable as possible. I would say up front before any more treatments that I had a panic attack during the last treatment and ask if and how they can accommodate me with that. While I can't interpret exactly whether you had a panic attack, I think most doctors can relate to that more than symptoms they can't attribute to PTSD (due to lack of knowledge). I would also say that I had pain during the last treatment. Maybe with that prior knowledge they can be more careful with you.

Are there any treatment providers you can talk to about this, including pain meds? After all, you have proof that you have tumors. It makes me a little baffled that the doctors didn't give you pain meds with this tumor size.

I'm so sorry you've experienced similar things, and I'm glad that you've been able to stand your ground and not do things that you're deeply uncomfortable with. Often times, we are made to feel like we shouldn't have a choice, and it's so wrong to deprive people of bodily autonomy.

I've contacted some doctors, and explained my specific needs, only to be met with condescension. One nurse I spoke to today said with disgust, "It's just a medical examination, a MEDICAL EXAMINATION." when I said I would not want to come and have those things done to me, that I just wanted to speak about removing the tumor. She said coldly that they can put a female chaperone in the room, that's it. I don't think these people understand how in some cases that just makes things worse. Having another medical worker watching me be in such pain and embarrassment would not be comforting whatsoever.

Plus they always assume the trauma was caused by a man. In my case, I did have trauma caused by a woman too. Why does the gender of the person make a difference, when my issue is not with the person's appearance or characteristics but with the inherent nature of a stranger touching me in ways I do not approve of? My sexual abuse trauma is so bad that I've never been able to insert a tampon, much less what I assume they're suggesting. These people are morally bankrupt if they think that it is okay to violate someone's consent and decency as long as a doctor is doing it.

If my experience is anything to go by, it really doesn't work that way. People who have supportive families and healthy upbringings seem to quite naturally gravitate towards having families of their own. They are in a stable position to begin with, have been steered towards reasonable careers, and enjoy ongoing support at many levels - financially, emotionally and practically (such as grandparents looking after a child). My biggest mistake in life has been fighting to compete with these people despite having none of these privileges.

Implying that procreation is a solution to social isolation is dangerously ignorant by failing to account for the long list of additional challenges caused by family abandonment. This can include physical limitations, loss of stamina, psychological distress, poverty, employment difficulties, less stable relationships and of course suicidal ideation. It hurts me greatly as I love children, but there's no denying that it is a recipe for disaster and violates every ethical standard.

The tragedy here is having to battle masses of ignorant people offering absurd 'solutions' in addition to feeling alone in dealing with serious physical pain and emotional despair. Nobody is willing to engage in a proper discussion about how to handle chronic quality-of-life issues.

I've always enjoyed your intelligent and thoughtful posts. I wish I could take away your pain or offer some sort of solution to this spiraling situation. But the best I can do is remind you that you are not alone in this. Wishing you the best always.

We can't compete with those people, and it's a shame that we're expected to. To move on as if nothing has happened, all while being abandoned by society and treated as undesirables because we grew up in less than favorable circumstances.

I love children too, so I can relate deeply to your wish for parenthood in spite of the grim revelation that it's not in the cards. I think you would be a wonderful parent, caring and kind, and it's such a shame that life hasn't allowed you to fulfill that role. It's deeply unfair.

You're right that people really do not want to acknowledge "shit life syndrome" and it's consequences. In spite of good intentions, every trite suggestion that's been offered to me is not really a viable suggestion at all. Telling someone with no family, friends, good health, or career prospects to travel the world or pick up an expensive hobby and get out there more (which is ironic when it's being said to someone with a developmental disorder that impairs communication and social skills) is tone deaf.

There are no solutions in my situation, and everyone knows this, yet I'm met with full blown denial when I acknowledge it. I really don't want to keep suffering like this for years upon years, when all of my hopes have withered up and died like a measly little flower that's survived a dozen winters by the skin of it's teeth. Time and time again, I've been fed with assurances of hope, only to be let down when these miracles ever happen.

Enough is enough, but no one else can come to grips with it. I've been alive long enough to seen the writing on the walls, to have a pretty good estimate of how my life will play out over the next few years, and it's not pretty. The older I get, the more I've lost and the less I've gained. I don't see why I'm not allowed to give up on a losing game.

 

[wait.what]

Oh God, that's horrific. I've had some of that kind of shit happen to me, and there are no words. There's nothing to be done about it, either. Shit life syndrome indeed.

At least those of us with ACE scores in the 8-10 range tend to die fairly young, whether it's from an actual attempt to ctb or not. I figure I have 5 years max, which brings a certain amount of solace.

 

[Rainy_days]

I'm really sorry that happened to you. Makes me so angry how cruel some medical professionals can be.

 

[Grubby]

My heart aches for you.