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Episode 88: Jenny Trefzger - ACNES
14 Plays16 hours ago
This episode of On One Condition follows Jenny Trefzger’s journey through persistent abdominal and groin pain after surviving stage IV colon cancer.
After years of scans, colonoscopies, PET imaging, blood tests, spine evaluations, pain procedures, and repeated reassurances that cancer had not returned, Jenny eventually encountered the possibility of Anterior Cutaneous Nerve Entrapment Syndrome (ACNES), a frequently overlooked cause of chronic abdominal wall pain.
The conversation explores the emotional burden of living with a cancer history, the challenge of distinguishing new symptoms from recurrence anxiety, and the importance of hands-on examination, self-advocacy, and specialist expertise.
Despite a long and frustrating diagnostic journey, Jenny is optimistic that she has found the right team who will be able to treat her chronic pain.
The song that Jenny chose is At The Limit by Yuki Hayashi.
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Transcript
Introduction to 'On One Condition' Podcast
00:00:00
Speaker
Hi, I'm Sylvain Bertelot and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Jenny Trevska and we're going to talk about anterior cutaneous nerve entrapment syndrome, also known as ACNES.
Jenny's Inspirational Song and Anime Influence
00:00:22
Speaker
Hi Jenny, how are you doing? doing pretty good just enjoying the morning at the beach you know it's a nice day out today it's been hot the last couple days but today it's pretty nice nice well I wish we could actually talk about that but that's not the focus of the podcast yeah so you know I love starting with the song so what song did you choose and why I chose At The Limit by Yuki Hayashi. You know, it's an instrumental and it's from the final season of an anime called My Hero Academia. You know, I'm a big anime nerd in Western comics and My Hero Academia is a really good mix of Eastern and Western superhero cultures.
00:01:02
Speaker
But Yuki Hayashi, as a gymnast who became a musician, I just to really
Cancer Journey and Personal Resilience
00:01:07
Speaker
great music. And, you know, I'm a stage four colon cancer survivor, which I'm sure we'll talk about a little.
00:01:12
Speaker
The music just... I don't know, it amps me up in the scenes from the anime it's from of the heroes, you know, at their limits fighting the villain in the final battle as, you know, colon cancer survivor, I kind of see myself in those roles. Obviously, I'm not a superhero, but a lot of points in my life I've had to make really tough decisions. And I've been at my emotional wits, my physical limits. And, you know, just the decisions you make when you're at your limit are what define you.
00:01:40
Speaker
And even though it's an instrumental, it just, The scenes from the anime and my own life experience is it just, it amps me up, pumps me up. At the limit is probably one of my favorite tracks from My Hair Academia.
00:01:54
Speaker
Nice. and And you shared a bit about that in emails with me and that yeah made me want to watch it. It's a really good anime. There's eight seasons, three movies and a sequel. and it's It's just, it's great world building and it's,
00:02:07
Speaker
It's good for kids, good for adults, because this thing is kids won't get and their adults will get some of the more adult elements. And it came out in 2016, before I was diagnosed with colon cancer.
00:02:18
Speaker
And the the motto, the main hero has a phrase, go beyond plus ultra, which basically just, you know, go beyond your limits. I've unfortunately had to do that more than I would have liked in my twenties with the yeah stage four colon cancer.
00:02:33
Speaker
It kind of became a rallying cry from, and not that I say it out loud, but you know that I've had to push back past what i feel were my emotional, mental, and physical limits more times than I can count or want count.
00:02:47
Speaker
Yeah. So we're not necessarily going to to talk too much about your fight with cancer, but I know that it is meaningful for you as a person, but also with acne and what we're going to talk about.
00:03:02
Speaker
So could you tell us a bit more about how you discovered that you have or you had colon cancer and what your situation is now?
Diagnosis and Detection of Colon Cancer
00:03:11
Speaker
um I'm 32 now.
00:03:13
Speaker
And I'm also transgender, so, you know, I was on hormones and when you do hormone replacement therapy, you ideally should be doing blood work to check levels. And mean, I had been sick for a while on and off, but you know, what, who thinks a teenager, a 20 year old before, I mean, now it colon cancer is a big thing, but back in the day, it wasn't as prevalent.
00:03:34
Speaker
My endocrinologist happened to check my iron. you know, iron panel and it was very low. It was like five. And again, as a 23 year old, I'm like, okay, sure. So then they checked my red blood cell morphology and apparently it was crazy. So then five weeks after they had me do a colonoscopy.
00:03:54
Speaker
So I was like, sure. Cause they thought I had a rectal bleed that would explain anemia. And so I went in for the colonoscopy and they woke me up and said, we found a five centimeter tumor in your descending colon.
00:04:05
Speaker
And I was like, what? And of course I was still on the drugs because they always tell you things in your colonoscopy while you're still high. Cause they don't like, they don't give you time to wake up. They just like, oh, here, that's like, what?
00:04:16
Speaker
And then, so, you know, it was gender affirming care, technically found my colon cancer. And then it ended up spreading the both of my lungs. um So I've had. A large part of my colon removed, 25 lymph nodes, two were positive, and then I've had two pieces of, one piece of each one removed.
00:04:34
Speaker
And as of this September, I'll be five years remission. We call it no evidence of disease because remission isn't the best word. So right now there's no evidence of cancer. So we call it no evidence of disease, NED.
00:04:47
Speaker
Technically, I'll be considered cured September 15th this year. still do scans and blood work and stuff, but you know, the odds of me having it again are pretty low. People can Google my name if they want and see the articles about me.
00:05:00
Speaker
We're doing this podcast to talk about the issues I've developed after cancer and how my cancer diagnosis delayed. Cause when you have cancer or go through chemo, it, you know, it damages your body and doctors like to blame a lot of things on that.
00:05:13
Speaker
When ideally life goes on after cancer. and new things can happen. You know, if not everything is caused by cancer.
Life After Cancer: Differentiating Symptoms
00:05:21
Speaker
It might play a role. Yeah, yeah, yeah.
00:05:24
Speaker
Well, first of all, that's amazing because um stage four colon cancer is not a good diagnosis. So the fact that you're your five years after treatment and no evidence of disease, that's amazing.
00:05:40
Speaker
So tell us a bit more about then what led you to go back to the doctor essentially and that what led to your acne's diagnosis.
00:05:52
Speaker
So, you know, as a cancer survivor, you know, I had an oncologist and an um endocrinologist in a primary care. So I finished treatment January 2022. And, like keep trying to live your life while we keep checking. That's what you do. Around, I'd say August 2023, I started having this pain in my groin and in my abdomen.
00:06:13
Speaker
But like, you know, I was getting back in the shape and trying to be healthy again after cancer, you know. At first I was like, oh, I'm probably just sore, you know, but my oncologist would always say, if you have a symptom for three weeks, that's when you should let us know. And, you know, because it might be ah not just like an acute thing, obviously chronic is three months, but so I let my team know, hey, I have this pain and it wasn't like a pain I'd had before. It's hard to describe. Depending on how I would sit, I would have this pinch and in different nerves in my abdomen and and it would sometimes refer out to the ribs.
00:06:49
Speaker
So obviously I told my oncologist and he's like, all right, let's do a scan sooner than we would have. Cause when you're a survivor, you do scans three, six months, you know, depends on a lot of factors and personal preference.
00:07:02
Speaker
So we moved up my scan and because it was a pain I'd never felt before. And i first I was obviously having, so I have autism. I probably didn't do the best describing it. and And I was in a panic about you know, oh this might be cancer again, you know, because it's always on your mind. yeah i believe when I went to urgent care about it because I didn't wait for the scan my doctor ordered. I was like, nope, let's just move it up. You can go to urgent care to speed things up. It's rather than two hour visit, it's like a seven, eight hour visit, but you can get things done faster. ah The urgent or the er r they were like, all right, well, this sounds like, you know, groin flank grip pain. And I'm like, sure. i I mean, I don't know. This wasn't something I had felt during cancer.
00:07:45
Speaker
Um, so they did a, they ended up imaging my spine cause you know, that's a, you know, spine can connect, connects to everything. They thought it was my spine causing the pain. And i ended up having L4, L3, L5, you know, minor issues that they felt explained it.
00:08:02
Speaker
I do have some minor spine issues, but it's not the cause of the acnes. Could
Early Nerve Pain Treatments
00:08:06
Speaker
you describe the pain a bit more for us? see Is it's a very bad pain or is it something that is in ah in the background and but you can live with and and how do you manage it?
00:08:18
Speaker
um So at first, you know, I was on GABA, they put you on gabapentin, that's doctors in the US love a drug called gabapentin. I don't know what else, you know, it's the generic, and I'm sure in other countries, there's different names for it, but it's an anticonvulsant, you know, any kind of nerve pain medication can help with it, but it's not like, ah it's it's not going to treat the disease. It just treats the symptoms.
00:08:40
Speaker
It's a sharp pain. And depending on how your stomach is sitting, it can shift laying flat, like laying completely flat, no no bends in the body. The pain isn't that bad.
00:08:51
Speaker
Sitting hunched in a chair as you know, us millennials like to do. doesn't help it. And it tends to follow the path of the nerves in the abdomen. a lot of nerves in the abdomen and basically acne is entrapment, which is scar tissue, basically, whether it's from tight clothing, weight gain, weight loss, hormones have been related to it. Like there's one study of a teenager who started birth control and then she developed acne.
00:09:16
Speaker
and prior surgery, which I've had a lot of prior abdominal surgery. So yeah, I mean, at first they said, try doing ring PT for your back. And I was like sure. So we focused on the back thinking that was the cause of the pain and in the abdomen.
00:09:30
Speaker
And unfortunately, prior to the pain on setting in August of 2023, I was already planning on moving to a new state. It's not great to move to a new state with a new health issue.
00:09:41
Speaker
I already established my new primary care, you know, family care doctor. And she had met me before the pain. So she's like, what? Like when I moved and then she saw me again, it was this weird dash. And obviously, like I said, of my history, abdominal pain, colon cancer history, stage four, it's not the best mixture to go to new doctors. And so they're like, okay.
00:10:03
Speaker
So, you know, my new oncologist was like, well, let's do a colonoscopy. So we did a colonoscopy. That was good. We did nuclear bone scan to see if it had spread to the bone. And we just kept doing CT scans. I kept doing PT, trying to just strengthen my body.
00:10:19
Speaker
is you know Maybe I was just weak or i mean, was not in the best shape because cancer is a lot. And basically, we just kept thinking it was cancer related until I had a PET scan.
00:10:32
Speaker
In December of 2024, getting the PET scan covered without evidence of cancer is a bit difficult, but you know PET scans would find hidden cancer and they didn't find anything. And then we started doing specialized blood work called CT DNA with a company called Natera.
00:10:51
Speaker
Basically, it's tumor DNA in your blood. And then if it comes up positive, it means you probably have something somewhere. It was all negative. So then we got to the point where it's like, all right, well, this isn't cancer because There's zero evidence of it. And there was never, besides my history of it, there was no evidence of it.
00:11:07
Speaker
I was seeing a pain doctor targeting my spine. We would do like tap blocks on my abdomen, which all that tells you that, all right, it's the nerves in the abdomen. It doesn't like tell you it's acne. So that's not how you treat acne or diagnose. It's just one of the ways of you know seeing where the pain is coming from.
00:11:27
Speaker
It wasn't really till I think September 2025 when i was like, all right, I need to talk to a surgeon because maybe it's something internal that I haven't looked at yet.
00:11:38
Speaker
So I spoke to a hernia surgeon in September 2025 thinking I had adhesions because, you know, scar tissue connecting my organs together. I was just spitballing because I was like, this this isn't like this isn't normal and I don't feel like I'm getting answers.
00:11:54
Speaker
So I spoke to a hernia surgeon and he's like, I don't think you have hernia. You didn't see hernia on the scan. And he didn't think I had adhesions because you like the only way to diagnose those is to go on with the camera and look.
00:12:07
Speaker
And he's like, I don't want to cut you open because it's and know there's no reason to right now. And in his note, he had suggested that my pain was a cutaneous pain because he just felt like that you know so the pain generation wasn't coming internally. It was coming from something on the surface.
00:12:23
Speaker
So I looked up what he meant and I was like cutaneous abdominal pain. And then I came across a diagnosis on Google, you know, good old doctor Google called it inferior cutaneous nerve entrapment syndrome. And I was like, oh, what's that?
00:12:37
Speaker
And the reason I hadn't Googled a lot of my stuff is when you're a cancer so patient, you do way too much Googling because you Google everything because you've been shown so much information and you know my therapists would say oh you don't have to google everything or you know try to ease back and i was trying to use back on it because i just you know it's a lot and i'll try you try to be healthy and not traumatize yourself by googling every little thing and i knew it wasn't cancer so i'm like okay a lot of doctors palliative care oncologists would just say oh this is just your new normal and i'm like i don't i don't agree but okay
00:13:16
Speaker
And at that point, so from your point of view, it sounds like you spent two years almost ruling out cancer. From your point of view, and if you can go back to that time, what mindset were you ah and and like Did you think it was cancer? Were you convinced it wasn't cancer?
00:13:38
Speaker
I was convinced it was, you know, I had Man, I was anxious as hell. Um, cause you know, the neurosurgeon had said it's just because you're in remission doesn't mean it couldn't come back as he's like, I see all kinds of late stage, you know, recurrences.
00:13:55
Speaker
and my grandmother had skin cancer that came back like 20 years later in her lung. So I know there could be, you know, the doctors are like, Oh, this is that lung cancer. When they took it out, it was just melanoma in her lung. Like, Oh, okay so i I know strange things can happen.
00:14:11
Speaker
And so the PET scan in December, 2024, eased my anxiety. Fighting for that was big pain because it's not an easy thing to get covered. yeah And I think my first CT DNA blood panel came back in March of 2025. We get too much into it, but basically it can detect things before imaging.
00:14:33
Speaker
And that came back normal, which I was really happy about. So I was like, all right, cancer bone stuff is ruled out, PET scans ruled out, the circulating tumor DNA has been ruled out.
00:14:45
Speaker
So I was like, okay, what else could it be? So then I was like adhesions, because like in the cancer groups, so you know, oftentimes you have a colon surgery, then you have colon cancer, usually metastasizes to the liver first, lungs, the second most common liver is So when you have liver surgery, people often have another open procedure and then if the surgeon sees scar tissue cuts it out, and because I didn't have a second abdominal surgery, I was like, oh, they didn't get to cut out the scar tissue.
00:15:14
Speaker
And that's why I thought I might have adhesions, because a lot of people would say, oh yeah, they cut out the scar tissue, they cut up my liver, and a lot of my pain went away because they cut up the scar tissue. So I asked one of my pain doctors, and he was like, yeah, you could have adhesions. He's like, I don't do that, Jenny, but I can refer you.
00:15:31
Speaker
and I spoke to the general surgeons there, like, we don't, you know, this doesn't sound like adhesions to us. We don't you know't treat it. You know, we're not going to just cut you open and look for scar tissue for no reason.
00:15:42
Speaker
Usually adhesion removal is secondary to another open procedure, like liver a resection of some kind. And, you know, I guess luckily I only had lung nets. Not that that was that lucky.
00:15:53
Speaker
And so... you know, we were just treating the pain. Tat blocks was what was first recommended. We tried Botox in the abdomen and that really helped. That was my idea because my PT, one of my PT said is, well, you seem to be guarding your abdomen a lot. Like when you're in pain in an area, your body reacts by tensing those muscles.
00:16:14
Speaker
And so abdomen is really tense. And i was like, oh Botox can relax the muscles. So I did Botox on the abdomen and it helped a lot for about three months. But then I started doing Botox for my migraines and you, for one, getting insurance to do a Botox for the abdomen. I don't know how my doctor got that covered, but they paid for it.
00:16:32
Speaker
But getting it with Botox for migraine is not like a thing that really happens. and It's just that would make the risk of antibodies and during two different Botoxes, unless they're at the same exact time, you're at risk of developing antibodies and Botox not working.
00:16:47
Speaker
I was just like at my wits end. So then I was like, all right,
Path to ACNES Diagnosis
00:16:51
Speaker
time for surgery. That's just different perspective. That's you know it's what second opinion, third opinions, fourth opinions are for. So one of the surgeons had suggested cutaneous pain. And i was like, I don't know what that is. i mean, obviously I know that meant skin.
00:17:06
Speaker
So I asked my neuromuscular about it and she is like, that is a thing, but I don't treat neuromuscular as a neurologist who do peripheral nerves. So, you know, any nerve that isn't the head basically.
00:17:17
Speaker
yeah And so I was looking for a doctor. I found a doctor in New York named Dr. Brian Jacob. He's a professor of surgery at Mount Sinai and he advertises on his website about you know, acne and curio-cutaneous nerve entrapment syndrome.
00:17:33
Speaker
Because again, it's not a thing a lot of doctors test for know about. A lot of my doctors had said, I've never heard of this. But it's a very common diagnosis and it's very often overlooked.
00:17:44
Speaker
So I, you know, did a video call with him. It was expensive. Now he talks to me for free, but it was an initial out-of-pocket payment of $500 off to him on the phone. And he was like, you make a really strong case for this.
00:17:57
Speaker
So there's two ways to really diagnose acne. The first is something called a carnage sign, basically lay flat and you need a second person to press you on the abdomen and where is the maximum point of pain.
00:18:11
Speaker
And then you lift your legs and your head. It basically tenses your abdomen. And if the pain stays the same or gets worse, it's a positive indicator that it's abdominal wall causing the pain.
00:18:22
Speaker
So that could be a hernia, muscle tear, you know nerve entrapment. And none of my doctors did that. For some reason, When I was a kid, doctors would touch you all the time. Not in that way, but you know they they would be hands on. So doctors would be hands on. That's a better way of saying it. yeah And now doctors have all of this bureaucratic paperwork they have to fill out.
00:18:43
Speaker
So doctors don't touch you that much. I'm sure your physical, they listen to your heart and, oh, can you lift your shirt, please? Is that OK? And consent and all that. But doctors would never touch my abdomen.
00:18:54
Speaker
So in even the hernia surgeon that I saw, he had he he had never heard of NTAQ-data nerve entrapment surgeons. But even in the field of abdominal surgery, not everyone knows about it. So Dr. Jacob in the video, he's like, yeah, so why don't you come in? So I plan to come in.
00:19:08
Speaker
And he said his plan when I come in would be to do nerve blocks on the ultrasound to find the nerve that was causing the pain. And i was like, oh, well, my doctors in Delaware can do that.
00:19:19
Speaker
you know because i i obviously i didn't want to wait and i couldn't see dr jacob for another four months because you know going to new i mean he could see me sooner but it's like traveling to new york while i was in school and i still have my other health issue you know i have health issues beyond acnes and cancer going on you know migraine and stuff and it just going to new york was just not an easy thing to just drop everything to go and he said whenever you're ready come so i ended up seeing him january 26 But I guess it would have been in October 2025, I had my pain doctor do trigger point injections in my abdomen under ultrasound.
00:19:55
Speaker
And so he injected and I had 100% pain relief for about an hour. And then I had decreased pain for months. And that's an indicator that where he injected were the right spots.
00:20:06
Speaker
ah And I emailed Dr. Jacob and he said, Jenny, that basically confirms you have acne. When acne is suspected, the important thing is to rule out the things I had ruled out. Because colon cancer, tummy ache, liver tumor, all these things can also cause as abdominal pain.
00:20:23
Speaker
And I had already ruled out all of them, colonoscopy. So he was like, you, Jenny, you've already done the hard work. And I was like, cool. Great to hear, and I guess. du He's a really, really nice guy.
00:20:34
Speaker
And so my i talked to my pain doctor about acne. He's like, yeah, acne. He's like, yeah, you could have. But he's like, you know, again, it's not an ICD-10 diagnosis. And, you know, my pain doctor said it's chronic abdominal wall pain.
00:20:48
Speaker
You know, he said the next steps on from his point of view would be more more injections and ablating the nerves, heating them up, freezing them, just destroying the nerves in some way.
00:21:00
Speaker
which having done ablations on my back, I was not too fond of the idea. Ablations on the back help, sure. If you have facet orthopathy, which I have a little bit of, but you know destroying the nerves in the abdomen with some of the urinary symptoms I have.
00:21:15
Speaker
you know I was cut open and pumped full of toxins for treating, you know, chemo's are toxins and they try to kill the cancer before it kills you. So I was just nervous about damaging the nerves So is this where you are now, still waiting for the treatment?
00:21:31
Speaker
Yeah. The plan right now is to address the two inguinal hernias that Dr. Jacob found on the latest scan, because I did a maneuver called Valsalva. You basically push out your abdomen as hard as you can. You go through the motions of doing it during your scan, and he found two inguinal hernias.
00:21:49
Speaker
So in Dr. Jacobs' mind, he says, your nerve pain in my groin is likely secondary to the hernias. But he says doesn't see hernias in my abdomen, you know, renal hernias or groin hernias.
00:22:01
Speaker
You know, we were already talking about cutting out the nerves in my abdomen. He was like, let's cut them out. But I'm like, well, let's learn a bit more. So I did the Valsalva maneuver and he pivoted. And then I also found out a procedure called hydro dissection.
00:22:15
Speaker
So a nerve block is when target the nerve and you give it steroid, And there's a procedure called hydro dissection where they do that, but they also add in a large amount of saline. When you have nerve entrapment, carpal tunnel, you know, elbow, ulnar nerve entrapment, such and such, they have to remove the scar tissue.
00:22:33
Speaker
But when you do a hydro dissection, you target the nerve and you inject a large amount of fluid so that the flesh expands around the nerve. And you know a regular nerve block is just a little bit of expansion, but hydrodissection is a lark.
00:22:47
Speaker
So the idea is to break up the scar tissue by expanding the flesh around the nerve. And I guess in the US, it's mostly sports medicine doctors that do that.
Exploring ACNES Treatments
00:22:56
Speaker
So I got referred to the sports medicine doctor at Hopkins, Dr. Muhammad Amam.
00:23:01
Speaker
He's really cool. He's like a black belt. He's been at the Olympics as in doctor for the US. He's really cool guy. So he did ultrasound, hydro dissections of my abdomen, and it really helped.
00:23:13
Speaker
And I've had prolonged relief from it. My pain isn't calm, but it's decreased. And Dr. Jacob is like, yep, that means you have nerve entrapment. but So in Dr. Jacob's opinion, he's never seen someone have a hernia and nerve entrapment in the same location.
00:23:29
Speaker
so And that's referring to my groin. But he's also like, Jenny, you're a case I've never had before. Colon cancer that young and... kind of surgery I've had. And so in our last conversation, was like, Jenny, all right, let's, let's start talking surgery. And I was like, yep, time to do surgery. Cause I did two sets of hydro dissection.
00:23:47
Speaker
so is the surgery now your, your only option essentially? Uh, no. So the other option is ablation, continued hydro dissection, which, um, there are some, you know, so when it comes to things that can be treated non-surgically, there's an escalation.
00:24:06
Speaker
Ideally, you start with trigger point injections and nerve blocks. If that proves the theory that yes, the pain generator is the nerve, then your next step is repeating the treatment. Some doctors have had success just during trigger point injections, nerve blocks, hydro dissections repeatedly.
00:24:23
Speaker
I haven't gotten enough relief while why find the, you know, I live in Delaware. It's kind of a medical desert. There are hospitals, but we don't have these major institutions like Hopkins or Mount Sinai.
00:24:36
Speaker
So obviously driving, Dr. Imam is happy to keep treating me, but I'm like, Dr. Imam, you're the head of a department, you're hard to schedule with, you know, and has to open have special blocks for me because of how many things he has to do with me.
00:24:51
Speaker
So right now my options are continuing the conservative treatment, trying out ablations, which I'm nervous about because ablating the nerve, for one, you could hit the wrong nerve, you know,
00:25:02
Speaker
I have the options of cryoablation, freezing the nerve or destroying the nerve through our public, basically microwaving the nerve like a microwave needle. That makes me nervous because it could contribute to abdominal weakness.
00:25:14
Speaker
Botox could contribute to abdominal weakness, and I don't want to make my abdomen any more weaker. So basically my options are continue continue the conservative or go to surgery. And Dr. Jacobs said is in his mind, the safest option is stage procedures, meaning multiple surgeries.
00:25:32
Speaker
He said, let's start with the inguinal hernias. Let's address the groin pain. Because you know cutting out a nerve is a permanent it's a permanent solution, non-solution. Once the nerve is cut out, that nerve is cut out.
00:25:44
Speaker
And you're creating the pain for numbness. Some people don't get numbness. And you also have the risk of a neuroma, basically a nerve bundle that grows and becomes painful. and then worse.
00:25:55
Speaker
And my non-surgeon, like Jenny, i've they've told me, I've seen tons of people do surgeries and then be worse off. And that doesn't make me any less nervous. And again, the other options are also going on the nerve pain meds, but those nerve pain meds make you a zombie.
00:26:10
Speaker
Gabapentin makes me very depressed and messes with my mental health. so Sure, it increases the pain, but it makes other parts of my life not great. And with all this medical care, as you can imagine, I need to be on top of it. Like I can't it can't be a zombie and function at the same time. Yeah. well um Right now, the plan is to do inguinal hernia repair in September.
00:26:32
Speaker
Dr. Jacob offered to cut out the nerves. He wants to do that as a second procedure because when it comes to chronic abdominal pain, you only want to treat the pain. You don't want to do anything that could worsen the pain because if we just start doing everything, we don't know exactly what fixed what.
00:26:48
Speaker
Something that strikes me listening to your story is that you seem to have been doing a lot of the suggestions yourself to your medical team.
00:27:00
Speaker
And I find that fascinating in a way because doctors are meant to know better than than you. and ah And I know there's Dr. Google, but but it's very difficult to Well, you can't really trust Dr. Google in a way because you you you never know until you have a doctor doing the actual procedure, the tests, what you have. So how did you navigate that? And how did you convince doctors to see you when there was not necessarily a proof that theyre a they were going to the right person? Yeah.
00:27:43
Speaker
Well, in the US, I have an insurance that doesn't require referrals. You know, unless the doctor themselves requires a referral, I don't need one to see in network doctors.
00:27:53
Speaker
So that makes it easy. Obviously doctors outside of insurance can require referrals. So for one, I already had a pain doctor and pain doctor's job is to treat the pain. And if I asked my doctor that, hey, I want to do trigger points in my abdomen, he's like, yeah, go ahead. You know, trigger points are very safe. Conservative treatments are safe.
00:28:12
Speaker
And as a stage four colon cancer survivor of autism, I've learned how to advocate for myself. When I was diagnosed cancer, it was, oh, you want to cut me open and cut out my colon? Sure. What what do I know?
00:28:23
Speaker
But like, you know, I've i've been through literal hell. You know, I've also had a stroke in my left eye. So, you know, i've I've had to talk to a lot of doctors about a lot of things. and And, you know, it's literally do or die. So I've i've learned to do.
00:28:39
Speaker
And you know the autism made it really hard at first, but I've learned how to advocate for myself. And I've learned how to convince doctors to do things like, well, cancer pain.
00:28:50
Speaker
And my pain doctor is a big advocate of treating cancer pain as well as you can. yeah you know And you also don't just go to the doctor and say, oh I'm in pain. you know you You got to talk about the symptoms. How does it feel?
00:29:03
Speaker
What makes it worse? What makes it better? You also have to try to be personable. And yeah, it's try when you're in pain, you're just you're cranky, you're mad, you're angry, and you feel like the doctor's are just pumping you full of pills and drugs and...
00:29:16
Speaker
But it's like the doctors are also broken by the same machine we're broken by because the doctors didn't create the American health care system. You know, it's created by the government. It's created by, you know, the people in power and, you know, the doctors work within it.
00:29:30
Speaker
So, you know, you got to try to be nice to the doctors. Not every doctor is nice and some doctors just aren't a good fit. But, you know, if you're asking your doctor to do a relatively safe, conservative payment procedure, that's the preferred option of a surgery.
00:29:44
Speaker
But um it's important to advocate for yourself and it's okay to bring studies to your doctor. You know, a doctor doesn't know every study in the field. When I was in cancer treatment, I would send a study to my doctor. I was like, what do you think?
00:29:57
Speaker
I wouldn't go, oh, this study means you should do this. That's how you approach the doctor. Yeah, that's a fascinating story, a very long journey. And I hope that you manage to find what the right solution is for you with your
Jenny's Happy Place: The Joy of Pets
00:30:17
Speaker
doctors.
00:30:17
Speaker
I just have one last question for you. What's your happy place, a place where you feel at peace? With my dog, I wouldn't necessarily have one location, but my current dog, maybe because she was raised during COVID, she's just so content and so personable because, you know, because always around people, but just being around her is great. And, you know, studies say eye contact with a dog releases serotonin and all the happy chemicals in your dog's brain and your brain.
00:30:45
Speaker
Being around her makes me happy, whether it's on a walk, at the beach, in my bed, on a couch. That's my happy place. When I was a kid, it was my dogs as a kid. So just being around my dog, Lisa, that's my happy place.
00:30:59
Speaker
Nice, nice. And i I like because that's a happy place that you can bring with you. That's great. Well, thank you so much, Jenny. It's a tough journey, but hopefully you you've got, at least for Acnes, you you seem to be nearing the the conclusion, hopefully. So that's what I wish for you.
00:31:22
Speaker
I'm very positive about about the future for treating my abdomen. i'm I was not positive during cancer and I'm not a positive person, but I'm i'm feeling really optimistic about it because ive I found the doctors that know about the condition.
00:31:35
Speaker
That's one thing Dr. Jacob told me is if you have acne, only let someone acne experience treat you. That might mean doing some searching to find someone, but you don't want to be a doctor's first acne case.
00:31:46
Speaker
you You want an experienced doctor. And I found those doctors. And I'm hoping the stage procedure plan of doing hernias, then nerve removal will, you know, minimal surgery, maximal results. And that's the goal.
00:32:02
Speaker
Nice. Well, that's what I hope for you. And yeah, it was lovely talking to you. Thank you very much. course.