On my second pack of cyclosporine. The second blood test hurt a little because the lab had to use a vein that I wasn't focused on when putting the lidocaine on. Some was on it, but not the glob it needed. She's a nice lady and it was fast. Now I only need bloodwork done once a month.
November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.
Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.
So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.
I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.
Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.
Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.
I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.
Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.
I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.
I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx
Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.
A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.
It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".
Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.
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Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support.
https://www.reddit.com/r/MedicalPTSD/
Searching for information on PTSD from VCUGs, I found this blog and THANK YOU from the bottom of my heart. I am sending you love and compassion, and I wish I knew some way to release you from your IC nightmare. Thank you for being a warrior for all of us.
ReplyDeleteI am 41. My 2 childhood VCUGs were in 1978 at age 7, for innocuous nighttime bedwetting, no history of UTIs. I repressed the memories of the procedures until I was 24.
My first conscious anxiety/panic attack was at 10, which was so familiar I knew I had been having them for years. Later that year I learned that alcohol made it go away; next came weed and other drugs, which honestly saved my life. Without them, I would have surely killed myself.
In high school I developed bulimia, which my parents denied I had. Growing up with undiagnosed PTSD made me the "problem child" and my family of origin still blames me for disrupting their "perfect" suburban life. I have been in therapy on-and-off for 28 years, which has helped me reduce the globalized PTSD back to just medical settings. I have been working on medical procedures; for example, it takes weeks of preparation in therapy, guided imagery, props, and sedation for me to undergo a pap-smear, and sometimes I still run out of the room in a full flashback of the VCUGs. I have only had 2 pap-smears in the last 20 years. The detriment to sexual intimacy, sexual sensation (it took my 5 years to teach myself how to orgasm), sexual intercourse (I must stop to pee 2-3 times during intercourse, it is like the wires are crossed down there). Most of all, I knew I would never be able to endure the amount of medical procedures to have children. I have accepted this as my life.
But this month, I had to have neck fusion surgery (I was told I would not be able to walk in a few years if I did not have it). I did all the psychological prep work on my part, and MOST IMPORTANTLY gave 2 directives to Northridge Hospital when I checked in : I have a panic disorder that MUST be told to everyone on my team and made obvious on my chart, and that I refused catheterization during surgery. I was told that they would inform the surgical team, but that "they *might* have to catheterize you," to which I emphatically said NO CATHETERIZATION. When I woke up, the first thing I asked was if I was catheterized, and I was told yes; I asked why and was told "for safety." No one could explain to me what that meant. Then during recovery, I went into a full blown panic/anxiety attack. No one had put on my chart that I have a panic disorder.
Upon returning home from the hospital is when my vagina began swelling and hurting. I highly recommend Tea Tree Suppositories as a natural way of restoring calm to agitated vaginal area. It took 7-9 days for my vagina to calm, but I have no sensation in my clitoris again.
Medical workers have NO RIGHT to do this to children or adults -- I even refused it, but as we all know, once they put you under they can do whatever they want to us.
I have spoken to my surgeon, who said he wasn't in the room when I was cathed and has no knowledge of the names of the others in the operating room. This is bullshit. I have written to Northridge Hospital demanding all records. I have not heard back yet. I assume I am going to need to get a lawyer.
The PTSD is back in full, I become hysterical with little impetus, battle suicidal thoughts, sleep in my closet (like I did when I was 7 after the VCUGs) and I have no idea how I am going to return to work in a few weeks. This type of disability is not an officially recognized disability by the powers that be. I will lose my heath insurance if I lose my job. Oh well, I am never EVER going to a doctor again. I would rather die.
Thank you for providing a forum for those of us who need support. Thank you for listening. Bless you.
Wow.. I have no reaction to this except pure fury on all counts. I definitely understand what you are going through about the paps and childbirth. I've already told my boyfriend of 9 years that this is no way I could ever have a child unless it would be 1. A homebirth 2. No prenatal testing other than blood tests. As far as I know I never went through anything others would classify as traumatizing, not like your story.. I get the whole "just get over it" response about the forced pelvic I had as a 5 year old.
DeleteAnd you're right, they have no right. It says so on the patient bill of rights -- we have have the right to informed consent, your consent wasn't informed. I don't understand why so much power is handed to doctors from everyone. I recall my mom saying why she didn't stop my doctor -- that back then that's just how things were and she was actively screamed at by her doctors when she disagreed.
My mom has an older friend who worked at hospital and we were talking about a similar topic and she said when she had to go in for surgery for the upper half of her body she strictly said she didn't want her panties removed (because her co-workers were kinda there) and wrote with a pen on her panties on top of telling everyone "DO NOT REMOVE." It worked. Perhaps we should try, "Do not Cath or else be sued"? A cath could severely hurt my bladder and urethra not to mention my similar personal issues.. I don't know what to tell you, except now if I'm EVER in that situation I will document myself verbally telling this to doctors with a recorder and get picture evidence somehow. I'm so sorry you were treated like that. There must be *something* we can do.. and I don't understand why there is no support group for people like us. I've looked. Closest thing is "Women against stirrups", but yes, it stops us from "being a woman" in the sense that we're too afraid to have kids or do the twisted rite of passage known as the pap.
Panic attacks can actually be a disability. My uncle got disability from anxiety attacks and didn't work. He lived out in the woods in Florida in a pretty nice cajun-styled home he built himself until passing from unrelated health issues, so there is hope if you have to quit. Just keep trying to get disability. The will deny you two times at least just as practice. You can also lawyer up. butyoudontlooksick.com had a nice disability section but the forums are down.. I suggest looking online about disability from panic attacks. Of course I think you'll need documentation from a therapist to help show how bad it is... colleges usually offer therapy for real cheap. So start getting that documented if you can.
Again I'm very sorry for what happened, all three times. No one has any right to do that to ANYONE despite age, gender, or anything else!!! I suggest you glance around at some of the blog links I have up on here since a lot deal with patient modesty, and cathing against your consent is certainly a modesty issue (and much more)! Do you mind if I share this on Facebook, or even as a post itself? You can remain anonymous.
yes we do need a support group. no one likes to believe that this kind of "small" test or procedure can cause emotional disorders. I have tried to get doctors or even my parents that put me through this testing to believe the kind of damage it does to a kid and tht it could be carried into adulthood.
ReplyDeletewhen I was younger I had to get VCUGs routinely done to me. from when I was infant till I was 9 years old. I remember getting this procedure done very well I still start to panic before going to see the doctor, shake uncontrollably when putting on a hospital gown and even when smells, sounds, tone of voice, sights and words are said or mentioned that remind me of the VCUGs I once had to endure, I have to fight the urge to run. I have regular panic attacks I didn't even realize that I had been having them for years till I found out the symptoms of a panic attack.
the thing that pisses me off the most is that when I discovered that these tests scarred me mentally and emotionally as a child I told my parents and told doctors. you want to know what they told me "well those tests needed to be done so u just have to deal with it" or my favorite one is "your 1% of the children that was effected this way, this test is done to many many children a year and they aren't effected like you are." that is the comfort I get no one believes that this procedure affects children long term. the doctors don't want to believe that a test that is done by their profession causes damage. they believe that the good out weighs the bad.
yes this test does need to be done to see reflux and other abnormalities I know this but the technic in which it is done needs to be changed. but first the medical professions needs to understand that no the good of the test does not out weigh the test if it causes trauma, PTSD, depression and anxiety these are long lasting effects that get carried into adulthood.
continued....
ReplyDeleteI mean really adults get relaxers and laughing gas when they get a tube stuck up their ass. this is a much more traumatizing and painful test that gets done to children. even listed in the side effects that can be caused by the test is traumatization to the child under going it. the way this test is preformed needs to stop. it NEEDs to be reevaluated so it doesn't cause lasting affects I speak from experience. but again no one believes me I need help getting people to see.
I believe that all children above the age of 4 should be sedated for this procedure bc this is when memories really start to be made by the child. also by this age the children know what good touch and bad touch is. even when I was told that doctors could touch me there it didn't make it easier for me that area was private to me and to any other child. even if we r told its ok, I still remember walking out of the room when it was over with my head down ashamed that someone in my mind had violated me and my parents allowed it to happen. no matter how much I cried and begged and told them no not to touch me there they still forced me to do it.
also keep in mind when this procedure is done here r a lot of people in the room I remember there being two people near my head and three at my bottom all of them staring at me like i was a zoo animal on display I remember the staff being nice but it didn't take away from what they were doing to me, not only was it embarrassing/violating it also was extremely painful when they put the tube in, it would ache and hurt all through the exam which lasts from 30-45 mins then it hurt afterwards. it would ache and burn like hell when u peed for the first couple times after the exam.
this procedure needs to change for the children undergoing it in the near future and also doctors need to review the lasting damage this has already had on adults that had this done as children so that maybe the medical staff can understand that this is not a small amount of individuals 1% as they like to say. they shouldn't make a person that has been emotionally scarred by this event feel that they are abnormal to feel this way. bc when doing my research on this subject I discovered that many adults have been affected by this if you are one of them dnt let them say that VCUGs couldn't effect you this way or that you r only one of a handful of individuals that were affected. it's not true there are many of us who feel the same. doctors don't like to be proven that they are wrong but they are boo hoo for them.
VCUG children PTSD depression medical procedures voiding csytourethrogram privacy
Exactly.. I may have to face a cystoscopy at some point in my life and I can't believe they would not give me what people are given from colonoscopies. People used to not go in for colonoscopies until proper sedation became routine.. hmm I wonder why?
DeleteI think the main problem is people don't want to talk about these exams and so not many come forward to speak of how devastating it was to them. If enough voices came forward, then just maybe..
So shocked reading the above. I thought I was the only one with ptsd following vcug.
ReplyDeleteHad one single vcug aged 6. Horrific experience, worst thing in my entire life... the intense searing pain (I actually felt as if I had left my body), the feeling of being held down by so many grown ups, the shock and overwhelming sense of violation. Sort of repressed the memory until my 20s when it came back in flashbacks. 20s were a complete mess... depression, anxiety, lots of self-harming, suicide attempts. I knew, at the back of my mind, that it was to do with this, but didn't want to say to anyone as didn't.think I could explain why something so routine affected me so deeply. Constantly seeing the scene from my vcug replayed over and over in my head. Panic attacks. Have had a lot of therapy for it now. Obviously not enough, otherwise I wouldn't be researching this stuff still. The thing that panics me still is knowing that this still goes on. And that hospital patient information leaflets (on the internet) describe it only as discomfort, whereas if you look further, you find.academic research where they literally studied the effects of vcug on children as a substitute for child rape (as they obviously couldn't rape children as part of s scientific study, yet wanted to study the longterm effects of such things on memory repression etc). Please, I personally need to stop thinking about and reading about this stuff, I can feel myself go into.state of panic and not being able to breathe from all of this. But can those.of you who are strong please find a way to.change what goes on nowadays... at the very least change the Wikipedia page to highlight the research that I just mentioned. I honestly didn't realise that there were others with ptsd from vcug and other violations, I gave that diagnosis to myself and now I read your forum this evening.
can some-one put here articles about ptsd from vsug? i want to do my m.a about this subject but couldn't fine anough articles.
ReplyDeleteand another thing, does some one want be intreviewed from skipe?
Oh my God.
ReplyDeleteI am also a sufferer of severe ptsd from vcug testing every 6 months from age 4-11. I am completely shocked after reading there are more people like me who suffer. I wish i could talk to someone. Thank you. Keep posting.
ReplyDeleteLike several who have commented, I too have been diagnosed with PTSD due to childhood vcug testing. I am a female-to-male transsexual and it has even impacted my transition (had a therapist who believed I only "think" I am male because of how messed up I am from the vcug testing; disregarding that my male identity goes back to before the first test happened).
ReplyDeleteI had my first known test done at age six. The last of four I know of was done when I was eight. I'm told I was hospitalized with a UTI when I was two and suspect one may have happened then as well.
I still remember the tests so vividly and it has been 18 years since the last test happened. I remember the last doctor's face, the face of the nurse who did one of the others, the way all of the rooms looked, things they all said...I remember the smile on the doctor's face as I screamed and cried in pain and fear...lying on the table and wanting so badly to fight but knowing if I did I would be restrained and that would be worse...begging to not have to go through it but nobody listening, nobody caring...wishing I could be anywhere else.
I wondered for a long time what I did that was so bad that I had to be punished so severely. I didn't understand what the test was for other than the fact that it related to my bladder issues.
I still have nightmares about it all. And even though most times now I am a grown man in these nightmares, I'm still powerless and not given a choice in what happens to me. I'm the same horrified child I was so long ago.
My mother doesn't realize what I live with. I think she thought I would just go through what I did and either not remember or not be traumatized. I'm sure she wasn't told that the vcug could be traumatic. Yet I can't tell her.
There are words I can't even speak because it still terrifies me. My significant other won't even say those words because just hearing them sets off my fears.
I have a surgery that I'm going to have to have in the next few years that means I will be waking up with that particular object in me. It's not optional. It scares me because I know that my anxiety is going to be sky high and I don't know what I will do when I find it.
It makes me feel less crazy to know I'm not the only person who has lived with PTSD because of these tests.
My heart goes out to you all...
This brings me back from when I was 6 I remember it like yesterday like the comment above I was told I was going to have a test I did not know what they meant so my family and I walked away into the clinic I was waiting in the waiting room calmly and I remember after waiting I had an ultrasound I thought that was it but they told me to undress into a gown then the nurse took me to a room where there were two technicians and a giant table and a stool to help me up on the table they told me too lie down then they were going expose my genitals I immediately covered them they told me "if you don't let us we have to keep you in here" so then I removed my hand then my clitoris felt hard so then they wiped my genitals I have never felt so violated in my life they were going to put the catheter in but I started to kick to fight them one of the technicians held my legs to put the catheter in. My private area soon started to hurt badly I started to cry in pain fear and embarrassment I think I was saying no too my mom said stop crying like a baby. Soon I had to pee in front of an audience I did not want to so then they put warm water on me then I started to pee after that I felt so horrible then two weeks later the same thing happened all over again soon I developed iatrophobia because of the test and when my pediatrician looked at my genitals I am 14 and can't go to the doctors because of those two things I hope everyone here feels better and sorry for horrible experience
ReplyDelete(This will be in four parts)
ReplyDeleteHonestly, I feel some relief now. I'm 17 and for the past twelve years, I have been slowly losing myself. I also had a VCUG as a young child. I had about five. Two of which I don't remember at all, and one where I only remember something my mom said. I was a very trusting child, and also very obedient. Once, my dad slapped my hand lightly when I was really young, because I was doing something I wasn't supposed to. He had never "struck" me before, and he said that I looked at my hand, then at him, and then I immediately began to cry. I guess little me didn't think someone I trusted would ever do something as terrible as slap my hand lightly... The first time I had a VCUG done, I had little idea of what would happen. I'm sure my parents told me, but I probably didn't put two and two together. I went in, got on the table and laid down. There were only two women besides my mother, and they had seemed nice. I remember my mom holding my arms down lightly so I wouldn't mess with what they were doing. One of the women brought a children's book over to me and said that I should read it so I could ignore what was happening. When they cleaned my urethra, I think started to realize what was about to happen. I fidgeted, and my mother said it would be okay, just stay still. And the doctor told me to keep reading. Being the obedient child I was, and not fully knowing what to expect, I did just that. Then the catheter went in... Knowing myself, I probably yelped and/or squirmed- I don't really remember. I do remember that when I tried to keep reading the book so I could forget about what was happening, the lady that had it was no longer paying attention to it and was helping the other women with the catheter. It was as if she believed that, now that it was in, everything was fine and I no longer needed a distraction... My mom kept me held down, so I couldn't grab for the book or squirm. I just had to endure. When the procedure was done, they told me to pee it out and that it would be over. I did so, believing them, but it burned. And it continued to burn every time I peed for the next few hours. It felt like I was peeing fire. They then gave me a lollipop, and said that I had been the bravest child they'd ever had to perform the procedure on. Even then, I told myself, “I wasn't brave. I just didn't know. Had I known, I wouldn't have been so okay with it...”
(Part 2)
DeleteThey found out that I had reflux, so I had to have the procedure again later on. They then tried to fix the problem. I had to have another VCUG after their attempted fix in order to see if I was fine. I cried to my mom, telling her that I didn't want to. I probably began begging at one point. All I remember her saying was, "Just one more time. If they see that you're fine, then you never have to have another test ever again." And being me, I trusted her. I know it wasn't a promise, but I still trusted the words. "Never again. Just one more time." I had a surgery after that. I was scared of being put under, but I got over it. It's easier to go through medical procedures when you're asleep after all... I woke up in a hospital bed and pretty much just felt numb. But after a day, I realized that I had a catheter in me. I was uncomfortable and in slight pain for the rest of my stay. It pinched and burned, and I couldn't sleep on my side like I was used to doing. Even when I slept upright, it still hurt, so sleeping was difficult. When I was finally able to get rid of it, it was a blessing. However, my relief was short lived. When I left the room to spend some time in the hospital's "school room" I had been feeling a strong urge to pee. But I knew it would be painful. Overly so now because of how long the catheter was in me. (I had been unable to pee the normal way until I was discharged, and I suspect the catheter was there to "pee" for me. Either that, or I just peed the bed in my sleep without knowing it...) So when I settled down in one of the school's seats, I was suddenly overcome with the unstoppable need to urinate. And I did... all over the seat... and it was more blood than urine... I had been humiliated and felt awful. And to top it all off, it felt like the fires of Hell had just gone through my urethra. The teacher helped clean me up in the bathroom, and all the while I cried.
(Part 3)
DeleteWhen I healed from my surgery- a new scar now running across the top of my pelvis and under by stomach- it was time for another VCUG. This time, I was a wreck. I knew what would happen, and I didn't want it in the slightest. My mom tried to comfort me with what she had said before. "Just one more time." You can only imagine my inability to believe those words this time, and I let her know that. "You said just one more time last time!" "I said if you were better, just one more time. You'll be fine." I felt betrayed even though I knew it wasn't her fault. The moment I stepped into the operating room, I broke. I fell to my knees and huddled against the side of a desk, just in front of the open door. I cried and begged for them to not make me do this again. I begged for them to let me be. In the end, they drugged me. It was enough to make me drowsy- and likely more controllable. They put me in a little windowed room while they waited for the drug to kick in. I fell into a light sleep while watching The Lion King. When I woke up, they were cleaning my urethra. I panicked, but they had the catheter in before I could do anything. When the procedure was over, I remember not doing anything. I didn't pee the catheter out, because I knew it would burn. And after the hospital school incident, I really didn't want to go through it again... When I did finally pee it out (with the help of them filling my bladder up, I suspect) I was mentally broken. I talked to my friends and family about the experience, but they were more interested in the surgery rather than the VCUG. Whenever I talked to them about that, they just seemed bored, or like they were trying understand, but just didn't understand it enough to do so. I felt alone, and I tried to forget it.
(Part 4)
DeleteBut now that I'm 17- and now that I've watched my life slowly suffer- I've finally realized what exactly happened to me. I've developed PTSD because of what happened. (And it probably doesn't help that I have a dad who has anger problems and doesn't yet know what I have. He just thinks I'm failing life because I choose to...) I was traumatized and betrayed, and now I hate going to the doctor, I fear the idea of using a tampon, and I can't even think about having intercourse without choking up or gagging. For so long, I thought I was born to think the way I do now. I constantly questioned why other people had such an easy time when I didn't. I've wanted to change, but never found the motivation to do so. And certain things are just to terrifying to change to. I hate it when my family talks about me having kids one day. "I'm never having them. Unless I adopt." "Oh, you'll grow out of it." "You'll marry someone at least, right?" "Do you really want to be a thirty year old virgin?" "The crazy virgin cat lady? That's not you." It gets so tiring trying to convince them that, no, I'm never going to give birth or have intercourse. I've only recently fully found out why, so I've never been able to give them a good enough excuse other than, "I just don't want to." Even now, I don't know how I'll tell my parents. I'm afraid of what they'll say. I have a hard time talking to people, especially about this. (I can type it, but I can't speak without choking up) So talking to my parents has always been difficult. At one moment, I'll be at the edge of saying something that truly matters, but then I stop myself out of fear. (I'm guessing it's because I've grown insecure about talking to my easily angered father.) I lock my thoughts up and don't let them know what I truly want and think. Once, I managed to tell them that I thought I had depression (which was really PTSD, but I didn't know) and even though it was said quietly, I know they heard. However, they looked over it, and haven't even talked to me about it. They avoided something that was upsetting me deeply. Who ignores their child when they claim to maybe have depression? They seemed more worried about whether or not I thought about killing myself (we were reading something that I said I related to) which I blatantly denied. I have thought about it, but I have never intended to actually do the deed. I'm scared of the afterlife, and my father has taught me to see suicide as a stupid thing. Life can get better. And it can- if I could sum up the courage to speak. So I don't know what to expect if I tell them that, "Hey, I think I may have PTSD because of my VCUG as a child." I expect it would be a, "Yeah, I can see how that would happen." or a "Are you sure? After all, you don't know that much about it. It could be something else." The latter coming from my paramedic father, and the prior being a nonchalant "sure" and then they gloss over it as if it never happened. I need help, but I'm scared of trying to get it. My parents are the only ones who can do anything about it right now. Even though I'd like to wait until I'm eighteen and can take care of it myself, I need to change now, before I become a full fledged "adult". I don't think I could handle going out into the real world with the way I am right now. I need help now- before it possibly gets worse.
Thank you for showing me that there are many other people with these types of problems. I'm ever so grateful that it's not just me and a few other people. It really helps. I can only hope that I will eventually be able to tell people I know what is going on with me. And soon. Again, thank you. And I hope you lead a wonderful life, no matter how hard and painful it can be. :')
I just want you to know that I read your post and that I'm sorry for what was done to you and what your are going through.
DeleteIt's very difficult to find a therapist when you're underaged for the reasons you mentioned. It's a lot easier in college because they provide free therapists to students.
I suppose you wouldn't feel comfortable talking to your high school counselor? If not, then I would suggest an anonymous forum. I'm an avid redditor and found this PTSD subreddit:
http://www.reddit.com/r/ptsd
I checked and they do have members with medically induced PTSD.
I'm glad that my blog is still helping people years later.
As an aside, this has got to be the worst website I've ever seen for mobile devices. This is the FOURTH time I've typed this.
Hi,
ReplyDeleteThis blog is a GOD-SEND! I always had overactive bladder as a young kid, then when I was 8 my mom dragged me to the urologist against my will. I remember him touching me in a way that was very violating and creepy. Then, on my school break that year, I was forced to have invasive surgery to correct this. I remember feeling so shamed and scared and when I woke up I was furious my parents didn't protect and advocate for me. My private parts hurt like hell, it burned to pee for 2 days and I had blood and it just...was utterly painful for a child. I didn't understand what I had done to deserve this torture...I am 25 now and just came to grips after suppressing these horrible memories after all these years what this did to me, mentally and physically. I suffer from panics and anxiety, too. It has ruined my life. I truly believe urologists are creepy and they violate a lot of adults and children, who we should be sparing! #ptsdsucks. #truthofviolation. #againstvcug
please someone help me. i'm 16 and i've six of these. I've repressed it for so long becuase i felt weak and guilty for being traumatized by something that was done by doctors who were trying to help me in the long run. I have panic attacks and flashbacks and the smallest things trigger memories. I had no idea other people were effected like this too. if anyone who's been through this could leave some way for me to contact them like an email or anything I really need someone to talk to I think I'm losing my mind
ReplyDeleteSorry if I replied twice(I don't think my reply appeared) but like I said if u need to talk my email is sarehsiddiqi@gmail
DeleteYou're not wrong for being traumatized, Anonymous. Not only can trauma happen no matter what people's intent was but doctors do unnecessary procedures often with this and it's cruel, really. It's invasive and you didn't deserve that.
Delete(Hugs) I went through this too when I was a kid, and also repressed it. I can't leave my contact info because I am scared of having it on here but I hope youre okay.
Holy shit I had a vcug as a kid (I think I was 5 but I don't remember) and its affected my life so much since then in ways I never realized. I can't see or talk about kids having invasive medical procedures, I've had a hard time using public restrooms, I have a fear of getting naked in front of doctors thats led to other traumatic experiences. only recently have I been able to find out what the procedure was at all, and reading all these comments makes me cry. I never realized I wasn't alone, wasn't the only person who was traumatized deeply because of a vcug. Ive never talked to my parents about it and I doubt my mom even remembers, and if she did she wouldn't be supportive. but now I feel like maybe I'll find someone who has gone through the same things and is willing to share experiences.
ReplyDeleteFor many people, it was their first sexual experience (sexual in that someone touched their genitals and penetrated them) and I think its the reason I don't feel sexual attraction to anyone. Making kids expose themselves, endure a painful and traumatic penetration, and then forcing them to urinate when they have no control otherwise and feel ashamed is absolutely inhumane. it's sick and I'll never be able to forgive doctors who think it's just "something to get over". I don't think I'll ever feel comfortable around urologist and pediatricians in general.
if anyone wants to talk or consider setting up an online resource for vcug related trauma, please email me at mirkymark@gmail.com.
Finding a forum of other women who have gone through this is a blessing. I was born with 4 kidneys and ureters. Two of my ureters became dislodged somehow and had to be re implanted when I was 2. When I was four I suffered another episode of my ureters becoming detached from my bladder, and another reimplantation.
ReplyDeleteAfter that I had to go for yearly checkups, around my birthday ( easy to keep track of) and endure the VCUG. I was on anti rejection drugs till I was 12.
I was 4 at that first procedure, mom leading me to the X-ray room holding her fingers. They had me remove my panties and, the smells of the room... antiseptic, cold, dim, and full of big complicated machines. I remember my mom holding me as I pulled off my panties and climbed onto the table. Tubes and things wrapped in paper on little trays, the paper under my naked bottom. Then the put my feet in things .... stirrups. There's were so many people.
They tell me to lay down, and I do, on the crinkley paper. The smells... they tell be this is going to feel funny, and suddenly they are. Wiping my privates with cold sticky stuff and laying a paper over my lap. Then his fingers probing, spreading. He takes the tube out if the paper and the pain. The edges of the tube tearing their way in. Searing pain. The drin the mask between my legs asked if there are any child size. The nurse says no. They look at my mom who with a couple nurses are holding me down while I cry silent tears, and they decide to keep using the smallest adult size cath on a 4 year old.... finally the pain settles. I know they got it in. Next the hang a bag of stuff and and fill my bladder. Not to normal levels... to painful excruciating tear filled levels...and I have to hold it in so they can take pictures. So many pictures. Trying not to have an accident because I was a big girl and wetting myself was a No no. And momma would be ashamed. Be good do as your told. I can feel them finally pull the catheter out. And I hurt so bad, my bladder is full to pain and all I want is to pee. But no. I didn't understand. But then I did, I had to pee myself laying on my back on a cold table in front of everyone...they needed more pictures. The one light above me glaring like an eye. And I had to humiliate myself even more. Finally the urine came (the solution the put inside me) and I lay there soaked and humiliated and violated.
Every year or so I had to have another VCUG until I was 12 or so to test the reimplantation. Sometimes they had child Caths. Sometimes not.
When I was about 6 I began to self injure.. biting. By the time I was 8 I was isolated and depressed in school. By 12 I had anorexic tendencies, and endured molestation, by 14 I was bulimic. 16 I was sexually assaulted and my virginity was no more. I began cutting, then burning. Attempted suicide at 16 by overdose, later tried to get aids. And has daily occurrences if suicidal ideation, panic attacks and was later declared to have bipolar type 2, major depressive disorder, and ptsd, with secondary bulimia anorexia. Later to get into major drugs and alcohol.
I've been in therapy most of my life from 16 to 47. Recently I was re diagnosed as ptsd with to to medical and sex trauma. With the other conditions stemming from it. I hope he is right. They want to try prolonged exposure therapy. Basically reliving every episode while being recorded, and then having to listen to your own recorded session every day until the next session and next trauma... then another week of reliving it at home through recordings... I'm terrified. Has anyone gone through this. I feel so much of what I have gone through in later life ( sex abuse) is a result of a little girl who developed a coping mechanism of "stay still and it will be over"... when does it end..
Im so glad I found this, i'm 22 and I was young, I don't remember how old I was when I had the VCUG's performed every 6 months to a year. It was hell I hated the doctors I hated my parents and to a certain point I still do everyday for letting it happen to me. I can never talk about it not even with my boyfriend not with anyone, i'm ashamed and no one will understand. I have nightmares, I can never fall asleep at night unless the tv is on so that I can be thinking/watching something else other then what happened to me. I can't hear or say certain words or see certain things without having serious flashbacks or PTSD symptoms. I shake and twitch constantly as a way of trying to shake the memory from my head even for a little bit. I didn't have sex with my boyfriend for 2 years because the thought of spreading my legs for anything is the most terrifying thought. I didnt know it was considered sexual assult until reading this post but that is exactly what it is. I didnt know what to do I still dont, I dont want to keep living like this twitching to rid my head of thoughts or having to avoid certain things, i've tried to block out everything at every turn but nothing works i've faught this PTSD for approx 10 years. (im guessing because i dont know the exact year it stopped i think i was 12 ) I was able to block out my age it stopped but i cannot block out the experience. I try to imagine the situation taking place in a different way, they get me in the room but i have a weapon or im super strong and fight my way out as though if i imagine it that way enough that it will become the new truth of what happened to me. I share the same views on catheterization just having to type that word was impossible i will never let that happen to me for any reason, I cant do it, it would truly break me if i'm not broken yet. Ive tried to commit suicide, ive hit myself with anything i can find just to try and stop the experience from playing in my head. I love life! but i hate this life i am living, no one should have to deal with this, nothing is worth this. It took me this long to even google it because I never want to willingly think about it or anything that might cause flashbacks! but i'm glad i did, thank you. Writing this ive been crying and shaking with nerves but it feels good to say something knowing it might be heard by someone who can relate and it helps to know that other people are going through this. Thank you to everyone who is speaking out and telling their story.
ReplyDeletealso anyone reading this and has gone through this, if and where did you get help that actually helped you ? any kind of therapy? medications? anything.
DeleteThere is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support.
ReplyDeletehttps://www.reddit.com/r/MedicalPTSD/
I’m so glad I found this page. I was traumatized by a VCUG when I was nine. I had my legs forced apart by my own parents and a strange, creepy man with no empathy looking at me, touching me, probing me, and penetrating me. I screamed and protested and cried the entire time, but every adult in the room reduced me to my genitals and dehumanized me. Then they put me in a wheelchair with the catheter inside me and wheeled me to the other side of the hospital, which was really uncomfortable (not to mention the entire waiting room heard me screaming and crying, and saw me emerge in a gown and wheelchair... not hard to figure out what happened). Then of course, the humiliation and shame of having my bladder filled until it was about to burst and being forced to urinate on a table in front of my parents and strangers. My mom kept pulling my gown up to give everyone better access to me. It was so violating to have someone violently force my legs apart and then force a tube inside me after probing me for a couple of minutes. In any other setting, that would have been rape. I talked to a therapist about it recently and she said my trauma is like a rape survivor’s. When I think about the incident I get sexually aroused, which makes me feel disgusting and confused. I’m guessing it’s because my young brain couldn’t differentiate between a medical exam and sexual contact. VCUGs are inhumane and should be banned. I’m traumatized for life. Those of you who have been through this, I’m so sorry. I hear you. Your trauma is valid. Don’t let anyone, family or medical professional, tell you otherwise. Forced VCUGs in particular are tantamount to sexual assault.
ReplyDelete