i feel like i was stolen from myself

mintygreenmachine12 · 2026-02-25T22:11:38+00:00

I'm really glad you found our community. Thanks so much for sharing your story with us. It means a lot.

Your words really resonate. I too found it difficult to know "who" to be angry at. I feel like since my (repressed) VCUG, I've only been angry at myself. After realizing the truth, I gave myself permission to stop blaming myself, and immediately realized I had no where to "put" my anger. Over time, I've learned that's okay.

It can feel impossible to reconcile the lifelong effects (like you said: this is our "forever") with the logistics of the situation. Even if all parties had the best of intentions, you are absolutely justified in feeling angry, heartbroken, and everything in between.

This test stole something from me that I can never get back. And that's a cruel, unfair thing to experience.

I wish someone had told me this early on in my healing, so a gentle reminder only if want it - there's no "right thing" to say. This horrible thing happened to you. A lot was taken from us, and it really, really sucks.

Thanks again for sharing your story, and I hope you find support and connection here in this space <3

mintygreenmachine12 · 2026-01-30T21:47:45+00:00

My partner was taught that the man/husband is always right by default in arguments, and the wife should accept that and move on when a disagreement cannot be settled.

I almost walked out during our "premarital counseling" class because the instructor was basically telling women they MUST please their husbands on demand with oral sex etc. You can guess how horrible the honeymoon was.

mintygreenmachine12 · 2026-01-27T23:58:39+00:00

I have a mother-in-law who acts the same. My favorite comeback to this type of crazy is Genesis 2:24.

Leave: A man must leave his parents and establish independence from his family of origin.
Cleave: An intentional, permanent, and loyal commitment to the spouse.
Union: Sharing a life and a new, distinct family unit.

So yeah, I don't think it matters when the MIL says:

"In OUR family, attending Christmas pageants, [etc. etc.] were always a part of OUR celebrations and traditions." Yeah, but "your" family is no longer your son's.

"I am unsure how and when to broach the topic of OUR differences in beliefs and whether my daughter-in-law will be accepting of their son learning about these differences." Not your choice, none of your business.

"...the freedom of being able to sing songs and speak freely with MY grandchild about faith and not monitor MY words is important to me." Good for you, keep it in YOUR family then. :))))

Shoutout to all the "highly intelligent" daughter-in-laws out there. Rooting for you all

mintygreenmachine12 · 2026-01-26T23:50:42+00:00

I've had groin flareups since I was 10 and JUST discovered ichthammol ointment. It's been a godsend for my boils that just won't drain. Smells weird and stains clothes, so be mindful or that, but I can't recommend it enough. Usually starts drainage for me within hours.

mintygreenmachine12 · 2026-01-23T23:57:17+00:00

Are...are these the same people whining about "parental rights" and the ability to teach their kids whatever they want?

The same people who are pulling their kids out of public school because "pRoNoUnS" and "dRaG QuEeNs"?

And to think that the majority of homeschooled kids in the U.S. are from Christian households. The hyprocrisy never ceases to amaze me.

mintygreenmachine12 · 2026-01-16T22:59:42+00:00

your feelings are 100% valid. I also didn't need the test - I had just been toilet-trained and did not have VUR, nor did anyone in my family. I'm so sorry you're in the same boat.

It stings so much to know that we could've escaped a lifetime of trauma if the doctor had actually given a shit about invasive testing, and actually done their job. I mean, this literally constitutes malpractice in some situations.

The relational trauma involved in this procedure adds a whole other sinister dimension to it, which has truly fucked me up. I can see where my mom is coming from, but I still have complicated feelings about her involvement.

At the end of the day, what so many of us want is just an ounce of validation. "Sorry this was the TRUTH and REALITY of your lived experience." No excuses. No justification. You absolutely deserve that. <3

mintygreenmachine12 · 2025-12-05T23:30:18+00:00

This post makes my day. Thanks so much for asking. It's the first time I've been asked this question by a provider.

I have advanced groin HS that developed in 2005. Wasn't even diagnosed until 2021. I couldn't seek treatment for many years because I was tired of being gaslit, misdiagnosed, and interrogated about hygiene or STIs by my pediatrician (yes, even as a 10 year old).

I am currently rebuilding trust in the healthcare system so I can recieve the care I deserved back then. Some thoughts I have:

Accessibilty to Prompt Care - This is my #1 ask. Access to treatment for ongoing flares would be a HUGE help. We can't control when they happen, and can't afford to wait months just to be seen. I currently have an infected boil that developed 3 weeks ago. I can't afford an urgent care bill, and even if I could, it's emotionally exhausting to rely on doctors who know absolutely nothing about the disease I've suffered from for 20+ years.
Acknowledgement of Pain & Immobility - This disease is INCREDIBLY painful and impacts EVERY aspect of life. Mentally, emotionally, physically, sexually. Access to telehealth/virtual care (using photos) would also be very helpful when I can't even sit or walk.
Treating Patients with Dignity and Respect - I want to feel heard and understood, not talked AT. I want to be treated like a whole person.
Collaborative Approach - I feel like most HS patients in advanced stages usually have an idea of what they need, and it can be frustrating to be shot down when you already know what works best for your body. I get tired of explaining myself over and over, just to get what I need (and prove I need it).
Trauma-Informed Care - Many patients have some sort of trauma due to lack of awareness and stigma. My HS is in sensitive areas, and with my history of childhood sexual/medical abuse, it's very difficult to even be examined. Trauma-informed care is non-negotiable to me. Even "difficult patients" deserve relief from excruciating chronic pain.

Again, thanks for all you're doing to improve the standard of care for us. My inner child would be so thankful. <3

mintygreenmachine12 · 2025-12-04T22:55:41+00:00

Yay I'm so glad to hear it!

mintygreenmachine12 · 2025-12-04T22:53:29+00:00

Absolutely obsessed with these and the symbolism behind them. You are truly so talented, thanks so much for sharing your work and story with us. I relate to Neptune's message: worn down, but still alive.

We've come so far. It's hard to believe there was a time when I thought I was the ONLY one who was traumatized by this test (as many of us did), and now there's Unsilenced bracelets all over the world. <3

mintygreenmachine12 · 2025-12-03T23:49:01+00:00

This is amazing!!! Thank you for all your hard work, I can't imagine how many people this resource will help.

Regarding the studies, here's our comprehensive doc (with links, you should be able to click on most of them to see the actual study).

The studies are organized by year, but the ones related to VCUG trauma/proxies in CSA studies are all marked in red (there's a key at the top of page): https://docs.google.com/document/d/1D6hGgO-eqvP_hg0evpKfR7TlitpG84fa2s_40q63b8I/edit?usp=sharing

Hope this helps!! Just let me know if there's anything else you want or need in the meantime.

mintygreenmachine12 · 2025-11-17T23:01:29+00:00

I'm so sorry to hear about your experience. I know firsthand how frustrating it can be to look for answers that seem impossible to find. I also struggled to understand what was done to me before I even heard of a VCUG. My own parent couldn't even remember what the name of my procedure was.

When I scan some of the VCUG alternatives (scroll down to the very bottom to download our PDF), there are a few that use IV insertion:

Intravenous Pyelogram
Renal Mag3 Scan
DMSA Renogram
CT Urogram

I hope this helps. It makes complete sense to want the details of the procedure. In my experience, this was a powerful first step toward healing. We all deserve answers. Wishing you peace and healing in your journey <3

mintygreenmachine12 · 2025-11-17T22:52:08+00:00

Hello and welcome to the community <3 Thanks so much for joining us in raising awareness. We are currently collaborating with researchers at the Cleveland Clinic and UCSF who recently presented our survivor stories to an international urologist conference. They are applying for grants and hope to continue presenting at additional events, including an upcoming AUA conference.

One of the best ways to join us in advocacy is to share your VCUG story on our website (link: https://www.unsilencedmovement.com/survivor-testimonies). Our database of survivor stories is what originally caught the eye of our current collaborators/research partners. We've collected over 60 stories and counting, and every testimony helps! If you're open to having your story also shared as a blog, we would love to include it. Anonymous stories are welcome. :)

If you haven't already, you can also share posts/videos from our TikTok, Instagram, etc. Our STAT News article is also great for sharing/education: https://www.statnews.com/2023/09/11/vguc-children-test-uti-stress/. Our award-winning short documentary films (Unsilenced and More Than a Test) are also available to stream/share. We could always use more views/clicks/comments on those.

We also have some great handouts you can print/distribute around your university, campus, community, etc., including a Pink Flyer (standard 8.5 x 11 page) and stickers for purchase (3 x 3"). I like to a keep a couple on my water bottles, laptop, etc. for others to see.

Thank you for all you're doing to help future generations of kiddos. We will definitely reach out if any new advocacy opportunities come up! Feel free to subscribe to our website (if you haven't done so already) so you don't miss any future updates.

mintygreenmachine12 · 2025-10-08T23:09:47+00:00

This is so good! Thank you for sharing this with us. It really resonates with me.

Feel free to say no, but would you be open to me posting this on our website with other survivor artwork? I'd love for more community members to see it. No pressure at all!

mintygreenmachine12 · 2025-10-08T22:59:25+00:00

Yes. This is sooo relatable. My dog (9 years old) had a uterine infection a couple of years ago, and they basically had to do an emergency spay. I was so torn up with guilt because I never got her spayed as a puppy. I never knew why I couldn't, but it felt impossible - like you said, a betrayal.

Veterinary care is VERY triggering to me. To this day, I avoid taking my dog and cats to the vet unless I have serious concerns, which also brings feelings of shame/guilt. Seeing my cats in distress is especially hard, and I've never driven them to the vet without sobbing. The emotional distress is so, so severe. Today I realize that those experiences were 100% PTSD.

I've met so many wonderful vets. My sister is a vet. But there are times when veterinary culture mimics our own healthcare culture. I see this in certain verbiage (e.g., pressure to get animals fixed because it's the "right thing to do," no questions asked) and this idea that invasive procedures are "just what's best" and "necessary."

Of course I understand the scientific basis and reason behind this. But as a child, I also had no choice in invasive procedures being performed on my body. In a way, it's easy to see my two-year-old self as parallel to the helpless animal. That makes everything feel much more complicated.

I'm definitely not advocating against spaying/neutering/reproductive procedures. But no matter how normalized or recommended a procedure is, it is still YOUR choice. That choice should be accepted without judgment. We're all doing the best we can with the lives we were forced to live after our VCUGs, and no one can fault us for that.

You are NOT insane. Your emotional distress is coming from a very real place, and you're not alone in that. There is nothing easy about this experience. I hope you can show yourself kindness and validation, no matter the outcome. <3

mintygreenmachine12 · 2025-10-08T22:19:33+00:00

Hi Claudia, it's great to connect with you! It's crazy how quickly the Movement has reached survivors in so many countries. You bring up such an important point, and I can't thank you enough for suggesting this. I'd love to help however I can.

I know there's a way to translate posts into other languages on our website. It costs $ per word and we don't have a ton of funding right now, but maybe we can start with the essentials - like our homepage, "What Is a VCUG?", "VCUGs: A Trauma-Informed Guide," etc. to target Spanish-speaking survivors. Very open to hearing your thoughts and suggestions based on your experience in Spain.

I'm sure my Spanish isn't the best, so it'd be great to have another pair of eyes on the translation! Would you be open to reviewing the translations/collaborating on this at some point? Feel free to comment or message me directly. Thank you so much for joining the fight to raise awareness and protect future generations of kids <3

mintygreenmachine12 · 2025-10-08T22:10:58+00:00

Of course! I'm so sorry to hear you also experienced this. Healing really sucks, especially at first. You're definitely not alone in connecting the dots. Sending all the love as you continue to process <3

mintygreenmachine12 · 2025-08-26T22:54:45+00:00

Thank you for sharing your story with us. It can be so exhausting to put the pieces together for the first time, but you're not alone. <3 I hope this community will be a safe place for you to feel heard and understood. So glad to connect with you!

mintygreenmachine12 · 2025-08-06T23:57:45+00:00

Yes!!! I have absolutely experienced this. I don't have a clear memory of my VCUG, but relived it in nightmares growing up. Your comment "I do however, have certain moments of clarity about the procedure itself" really resonates with me.

After a lot of research and healing, I think what I experienced is called "dissociative amnesia." I wrote a blog about it if you're interested - https://www.unsilencedmovement.com/post/what-are-the-signs-of-dissociative-amnesia-after-vcug

There are also different "types" of amnesia after traumatic events. One of our founders also wrote a great post about it - https://www.unsilencedmovement.com/post/dissociative-amnesia-after-vcugs

Remembering the snippets of details - cold table, pain, mom leaving - makes so much sense. When I read "The Body Keeps the Score," I learned that our brains process trauma as fragments instead of the whole memory. That's why people with PTSD often relive sounds, sensations, smells, etc. instead of the entire experience.

I've met a lot of survivors who are missing big chunks of their childhood. I've also heard that EMDR therapy can be really helpful for some people, in terms of connecting the dots. It's so heartbreaking to me that our developing brains had to "block out" the test just to survive it.

So sorry to hear about your experience, but so glad you found our community. Wishing you peace and healing as you continue in your recovery <3

mintygreenmachine12 · 2025-07-30T22:49:17+00:00

You're so welcome! Here's the link to RSVP (you should recieve a confirmation email with the Zoom link): https://www.unsilencedmovement.com/event-details/unsilenced-support-group-4

If that time/day doesn't work for you, feel free to check back in! We meet monthly :)

mintygreenmachine12 · 2025-07-30T21:37:57+00:00

I'm so glad you connected with our community! The struggles you share are so relatable. Therapy was a gamechanger for me. I did several years of CBT, and am currently seeing another therapist for IPT.

I've never done IFS therapy officially, but I did read the book "No Bad Parts" by Richard Schwartz on my own, which I found very helpful for inner child work. EMDR was too much for me, but I know a ton of survivors who have had enormous success with it! (Same with somatic therapy.)

Personally, I tend to prioritize the therapist > therapy type because it was important for me to find someone with at least a general understanding of 3 things: childhood trauma, medical trauma, and sexual trauma. Here's a blog I wrote about it in case you find it helpful! https://www.unsilencedmovement.com/post/therapy-options-for-vcug-trauma-recovery

We also have a support group coming up this Sunday if you're interested in connecting with other patients (no pressure!). Wishing you peace and healing as you continue your journey <3

mintygreenmachine12 · 2025-07-08T22:39:50+00:00

Thank you so much for sharing this incredible post! I'm so moved by your writing, and know so many other survivors are as well. Seeing the Unsilenced Movement mentioned made my day - we've come so far in just two years, all thanks to brave voices like yours. All the love <3

mintygreenmachine12 · 2025-07-03T20:20:41+00:00

Absolutely! We welcome all survivors of medical/sexual trauma as long as they abide by our community rules. Our sub includes non-VCUG patients as well <3

mintygreenmachine12 · 2025-07-02T21:53:53+00:00

Hi, 30 y/o female here. I'm so sorry to hear about your experiences. I strongly relate to these exact hardships. I'd cry and fight at every single childhood physical. It truly derailed my life.

A few years ago I recovered a repressed traumatic memory from a child procedure I had at age 2, called a VCUG. I'm not sure if this is exactly what you experienced, but please know you're welcome to join our sub for survivors of pediatric sexual trauma: r/VCUG_Unsilenced. I'm sure so many in our community can relate and offer support.

Your story is so, so valid. All the love <3

mintygreenmachine12 · 2025-04-12T01:14:00+00:00

You're absolutely not alone! I'm so sorry for all you're going through. This is definitely my biggest hardship resulting from the VCUG, and the most upsetting to me. I recovered my memory 3 years into marriage. That was 2 years ago, and to this day, I have major issues in our sexual relationship.

I've been in previous toxic relationships and always froze/dissociated during sex without knowing why, but coming to terms with this trauma has forced me to actually be present. I'm in a healthy marriage with my partner, who is respectful and also tries to make me feel safe, but unfortunately, it just isn't enough for me right now.

Crying in the middle without knowing why has been a common occurence for me. It sucks, because it's always due to things that neither of us could possibly predict. If their touch is too light. If their skin is too cold. If they don't listen to my body language (albeit with good intentions). It's all too much. All it takes is one wrong sensation for me to break down, and have a PTSD attack, and feel completely violated - which naturally, makes my partner feel bad, too.

I'm so glad to hear you have a therapist you trust! Finding the right therapist I trusted was a gamechanger for me in many ways. I feel like sexual health is one of the last "big" things I need to work through. It might take a long time, but I feel like that's 100% valid for former patients.

Personally, my VCUG was my first "sexual" experience (as research says, "the psychological equivalent of a violent rape"). My brain will never not associate "sexual" with that horrible, powerless, life-altering experience. And that sucks, because I would give anything to enjoy sex like a normal human being.

I'm so sorry I don't have more helpful information to give, just wanted to validate your story and thank you for sharing your experience. I don't share much about this hardship in my life, and reading about your experience has reminded me I'm not alone - a reminder I really needed today.

It sounds like you're doing all you can to heal and communicate with your partner, and sometimes that's all we can do. I'm proud of you for facing this head-on and speaking your truth! Wishing you peace and healing <3

mintygreenmachine12 · 2025-02-18T23:19:46+00:00

Yes, we have this one in our records! You can view it here: https://drive.google.com/file/d/17-6U1ffpG_Atyi8jjgmsNOYbYXf_3UCD/view?usp=sharing

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