Stephanie Berman & The Aziza Project: Providing Hope and Funding for Women in Pain

What does it take to navigate a labyrinth of medical uncertainties and come out stronger on the other side? On this episode of Steel Roses Podcast, we bring you the inspiring story of Stephanie Berman, founder of the Aziza Project. Stephanie endured a grueling 13-year battle with gynecological pain, during which she faced countless medical professionals who offered little to no relief. Her journey took a pivotal turn when she met Dr. Corey Babb at the Haven Center, leading her not only to recovery but to a newfound mission: helping other women find the specialized care they desperately need.

The struggle to secure effective treatment for conditions like endometriosis is fraught with challenges, from dismissive doctors to financial hardships. Through personal anecdotes, we shed light on the persistent effort required to break through these barriers. Stephanie shares how the Aziza Project is easing some of this burden by covering travel expenses for consultations with specialists, emphasizing that comprehensive support is essential for women's health journeys. We also discuss the broader systemic issues that complicate timely diagnosis and treatment, such as the lack of disability benefits and the economic impact on patients.

Our conversation goes deeper into the emotional and physical toll of chronic conditions. From the pain of surgical scars to the importance of self-advocacy in healthcare, Stephanie's story is a testament to resilience. We discuss the complexities of post-surgical pain and the limitations faced by organizations like the Aziza Project. This episode is a powerful reminder that patients must be proactive participants in their healthcare journey and highlights the importance of seeking support and resources to navigate the intricacies of medical care. Join us for a compelling discussion that underscores the strength and determination required to advocate for one's health.

Are you experience gynecological pain and need help? Reach out to the Aziza Project for support
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Keywords
gynecological pain, medical practitioners, Aziza Project, hope, funding, complex gynecologic pain, advocating for oneself, knowledgeable doctors, compassionate doctors, barriers in healthcare, financial constraints, lack of representation in clinical trials, chronic pain, The Aziza Project, pelvic pain, central nervous system, pelvic floor dysfunction, scar tissue, endometriosis, CPT codes

Chapters

• 0:02 Women's Painful Journey Towards Relief
• 13:21 Persistence and Barriers in Healthcare
• 23:15 Navigating Healthcare
• 33:39 Unnoticed Pain From Scars
• 38:59 Navigating Surgical Scars and Pain
• 44:09 Navigating Medical Codes and Healthcare

Transcript

Jenny Benitez: 0:02

Hello everybody. This is Steel Roses Podcast. This podcast was created for women, by women, to elevate women's voices. I'm very excited to have you all with me today. Our guest today is Stephanie Berman. She's the founder of the Aziza Project.

Jenny Benitez: 0:18

Some background on Stephanie she did suffer for more than 13 years with multiple gynecological pain generators. Did suffer for more than 13 years with multiple gynecological pain generators. She engaged with 11 medical practitioners from naturopaths, general practitioners, obgyns, dermatologists, physical therapists and not a single one was able to provide any answers or relief. And if you're a woman, I think we're all probably nodding our heads right now in understanding and alignment that this is unfortunately a normal thing. For Stephanie, however, that all changed when she met Dr Corey Babb at the Haven Center in Tulsa, oklahoma. Not only is she feeling better than she has in years, but, most importantly, she has hope. That hope is for a full and rewarding life without pain, and that is actually what the inspiration was for the Aziza Project. She wants to offer other women the same hope by connecting them with medical professionals and funding their travel and procedure expenses. Stephanie, welcome to the podcast. We're so happy to have you here.

Stephanie Berman: 1:17

Thanks for having me. I'm excited to be here.

Jenny Benitez: 1:20

So, stephanie, I want you to take some time and introduce yourself to the listeners, let them know. I think that your story of your trials, having to get through what you went through, is going to really resonate with folks. And then hearing about the Aziza Project and what you're focusing on and just kind of giving the listeners a little bit more about yourself.

Stephanie Berman: 1:41

Sure, Okay. So I'm Stephanie, I'm the founder of the Aziza Project, like Jenny said, and my story really started, you know, back in high school, like all of us you know, I dealt with painful cramps and bleeding like more bleeding than I probably should have been. You know stuff like that. My mom I remember my mom taking me to our family doctor and they said you know, the only thing we can really do for is to put her on the pill. And my mom didn't want to do that at the time. I'm glad she didn't, because my family does have a history of blood clots and stuff like that. So so that was a good move.

Stephanie Berman: 2:21

Anyway, carrying on into college and stuff, I didn't really notice any change in the severity of my cramps until after I got married and that's when things really started to take a turn. Like I remember the first year we were married I was working at McDonald's making French fries and I had to call in one day and I'm like I'm sorry, I can't come into work, I'm in too much pain, I'm laying on my living room floor. I had, like no furniture because I just moved into the apartment and I just can't move. And fast forward a couple of years and I started experiencing some other pain pain in my hip and I started experiencing some other pain pain in my hip, pain in my pelvic floor, pain on my external genitalia, it's just all over pain with penetration and I just that's when we started looking for answers.

Stephanie Berman: 3:20

And I distinctly remember because my my symptoms showed up as itching first and this is where a lot of women run into trouble, because a lot of things show up as itching first.

Stephanie Berman: 3:31

So of course, you think itching, you think yeast infection, but then you go to the doctor and your yeast infection swaps come back negative and the doctor's like I don't know what to do with you. So you just walk out the door and you don't know what to do. And they don't know what to do, so you try a different doctor or you just don't do anything for a long time until you happen to read something online or bump into somebody else who says, oh, I had itching and it was this, and so you chase that down and it doesn't turn out to be that. And this was a lot of what my story was and why I went through so many providers. You know, our family doctor sent me to a local uan who sent me to the vulvar pain clinic at the university of washington in seattle and they basically looked at my husband and said be gentle, and sent us right back out the door.

Jenny Benitez: 4:14

Yeah, god, I I, oh, my god that was a thing and that was.

Stephanie Berman: 4:18

That was the head guy at the vulvar pain clinic. That wasn't even like one of the doctors that just happened to work there or one of the student doctors. That was like the director of the clinic.

Jenny Benitez: 4:29

Listeners, you can't see us, but I facepalmed really hard just now when Stephanie was telling that part of the story, because it's yeah, I can't even Go ahead, Stephanie, keep going.

Stephanie Berman: 4:40

She had her head in her hands. It was bad. So, yeah, after that experience, I think we went back to the local OBGYN and we're like he didn't do anything and so he sent me then, I think, to pelvic floor physical therapy. I failed out of that because of the skin issues I was having, so we couldn't even get to the pelvic floor issues, the skin issues I was having, so we couldn't even get to the pelvic floor issues. Um, and so I, after I failed out of pelvic floor physical therapy the first time, I tried again a few years later, but again failed out for the skin issues that they just couldn't figure out.

Stephanie Berman: 5:19

Um, my endometriosis symptoms started getting worse and by then I knew the word endometriosis and I'm like I told my husband I'm like I think it's endometriosis. I think we need to start looking into this before it gets any worse, because if we let it go, I'm going to be like I'm not gonna be able to get off the couch multiple days of the month. Right now it's only one, so we're doing pretty good, but it could get worse fast. And so, to his credit, he's like, okay, do what you need to do, and wouldn't you know one of the best endometriosis surgeons in the country lives across the state from me, about four hours away in the same town as most of my aunts and uncles on my dad's side of the family. So I called their office. This was right before the pandemic. This was like 2019, I think, when I called them and they had like a waiting list of a year. That's how good the surgeon is and I was like I'll wait a year for the best surgeon of the country for sure. So um called over there, got an appointment in 2020. You'll know what happened in 2020.

Stephanie Berman: 6:26

But it ended up working out. Um, I think my my appointment only got shoved a couple of months, like we ended up doing a telehealth appointment instead, so we could just have a conversation. And then she's like, yeah, you need to come into the office and they had openings like two months down the road. So we did that and I would have been like straight into the OR if I had been able to after that, because she didn't. This was my first time having an internal ultrasound and she could see the endometriosis on that scan that she was doing because she's known what she's looking for for years. So I think she even identified yeah, I think there's some adenomyosis in here too.

Stephanie Berman: 7:07

And wow, she must be very good yeah, she's like my ovaries are fine, so we can leave those in. So I was worried about those, because I've been diagnosed with PCOS by that OBGYN years and years before. And she's like no, no, your ovaries look great and if they look still look great when we get in there, we'll just leave them in, you'll be fine. Um, and so we did um, and I had mentioned the vulvar pain I was having to her and she didn't really know what. She didn't really say much about it. But her nurse practitioner said maybe it's like in sclerosis. You should trace that down. And so after my hysterectomy, you know, I got better healed from that. And then, in the spring of 2021, I connected with my chiropractor's wife, who's also a chiropractor, and asked her I'm like, hey, can you put out an anonymous Facebook post for me looking for a dermatologist who can handle a pretty complex case? Looking for a dermatologist who can handle a pretty complex case? That's the dermatologist that ended up gaslighting me. Oh my God. Yeah, it was one of those cases where she said you're going to try these meds but you're going to fail, and then we're going to get you on this really expensive biologic that insurance won't approve any other way. But what she didn't tell me was when we started the more expensive biologic, I was supposed to stay on the meds that I supposedly failed. She didn't tell me this. And then when I went back in after being on the biologic for six months and she found out that I had stopped taking those potent steroids or using them, she got really mad and like yelled at me. It was bad. And then she yelled at me because I yelled at her because she wasn't listening to me. Um, so yeah, it was, it was bad. I never went back.

Stephanie Berman: 8:52

Um, so then I jumped on instagram and that's when I found dr bab and I looked at. I saw I found him because of a live he did with a major lichen sclerosis social media influencer. Jumped over to his profile, looked at like everything. I was like, oh my goodness, he knows a ton about female pelvic anatomy. I bet he could figure out what's wrong with me. And so touch base with him Turned out he was starting his own solo practice.

Stephanie Berman: 9:21

Later that fall had a consultation with him in October where I woke up at 3.30 in the morning of that virtual consultation wondering to myself how can I help women who don't have the financial resources I do to be able to access care of this quality so they can get answers too. And I'd completely forgotten that I had a way to snap my fingers and start a nonprofit. So I spent three months kind of like mulling this over how do I do this, how do I start a nonprofit? And then I was in Tulsa, like I'd seen Dr Babb, I'd had my procedure, I was back at the hotel laying on the bed recovering from the anesthesia, I had my phone in my hand and I remembered oh yeah, I have a connection with a fiscal sponsor for nonprofits out in California, so I'll just email them.

Stephanie Berman: 10:07

I haven't talked to them in a couple of years, but I'll email them, see if they're looking for new projects. And sure enough, they're like yeah, let's sit down next week when you're home and feeling better and let's talk. So I talked with their director for 30 minutes the week after my procedure with Dr Babb and by the end of that call he's like yeah, we'll just see it as an extension of your previous project with us and you don't even have to fill out any more paperwork. And so I had nonprofit status and the Aziza project didn't even have a name. It's amazing.

Stephanie Berman: 10:38

Yeah. So our mission is to offer hope to women who are suffering from complex gynecologic pain by providing funding for them to see a doctor who has the knowledge and training and compassion to figure out what's going on. One of the very first, the very first question I asked Dr Babb in that virtual consultation back in October 2022 was and this won't surprise you at all if you can't figure it out, are you just going to give up on me like everybody else? And his answer stuck with me and I'll tell you why. In a second he said no, I'm a bit of a bulldog and I'm going to keep at it until I figure this out. And I started giggling to myself a little bit because in my day job, three days a week, I wear a money coaching hat, so I'm helping people with their budgets and stuff all day. And at the time, my nickname in the money coaching world was the pit bull Bulldog.

Jenny Benitez: 11:37

Oh, my gosh.

Stephanie Berman: 11:40

The pit bull and the bulldog. I think we can figure this out. So I started the Aziza Project in January of 2023, and we were able to help two teenage girls who were having menstrual-related issues last year. And then last year was a lot of growing, building, you know, getting our logo and our website and starting to get some funding coming in. And then this year has been more of the same working on getting some funding coming in, and then this year has been more of the same working on getting more funding coming in.

Stephanie Berman: 12:08

We did help a gal in New York. Actually, she found herself with a scholarship to go to a conference in St Louis, and St Louis is only a hop skip and a jump from Tulsa, so she had a scholarship from some other organization to go to this conference in St Louis is only a hop skip and a jump from Tulsa, so she had a scholarship from some other organization to go to this conference in St Louis. So they flew her to St Louis, covered her stuff there, and then we flew her from St Louis to Tulsa. She saw Dr Babs, started getting answers, and then we flew her home and we covered her hotel while she was in Tulsa too, too, and so and then, now that she's seen Dr Babb, now that she's considered a patient of Dr Babb, we've been able to cover at least one, if not two, virtual appointments for her as well. So it's some blood work. So it's been a good year so far for us.

Jenny Benitez: 13:21

You know it's your. Your story is amazing for for many reasons. So I want to highlight a couple of things. Number one you took, um, well, first of all, the fact that you kept on the path of I'm going to find an answer here. Um, I will tell you, I think that's one of the first and hardest things for us as women is that, and even me personally, because I have been and I'll tell you, like my spiel on endometriosis.

Jenny Benitez: 13:49

But a lot of times, like when women go to the doctor and they have that, have that first, you know experience and the doctor's like, oh, just take some aspirin, you'll be fine. Most people just take that as their, that's it. They don't think of anything else, they don't think to find. Well, I don't think that that's correct and it's not to, and I don't ever mean to take away or devalue, like the opinion of a medical professional, because they are schooled for this, like they're, they're getting an education for this, so there's no devaluing of medical professionals advice. However, they're also human beings and, as a human being, they are not perfect and doctors do make mistakes and there's an overwhelming amount of information out there. And again, not making excuses, but also not taking away from them. They are also doing the best that they can because I work in that space, so I do know some of the process there. So the fact that you had these multiple experiences and you kept going for it to see like I'm going to find a solution here, that in itself is a big deal. So for you to continue on to it like honestly, like a huge, huge, like. Kudos to you and props to you for even continuing down that path, because many of us, myself included, get that initial. Well, this doesn't going to work.

Jenny Benitez: 15:04

And I'll use the example of like for me for my endometriosis pain last year or two years ago I think it was two years ago the OBGYN had prescribed birth control pills for it and she said like, oh, take the birth control pills, let me know in a couple of months. We'll revisit it in three months. I only lasted two days on the pills because it just was not sitting well with my body and I felt immediately felt a negative response and I was like I'm not taking this and I stopped taking it. My lifestyle is very busy and I never went back until my annual exam and then we had revisit, revisited the discussion again. So all that time I continued to just be in pain and much like what you referenced in your story, I'm noticing, as I get older the pain is actually increasing quite a bit and I can actually feel it increasing from my lower abdomen.

Jenny Benitez: 15:54

It's not just. The level of pain is much more extreme now and debilitating than it has been before, and it's also spread, and I know it's spread. They don't even have to go in. I can tell them it has been before and it's also spread. And I know it's spread. I don't even have to. They don't even have to go in. I can tell them I can feel it and I know I'm sore from here to here, and from here to here and it's sore everywhere. It feels like somebody's beaten me up a bit. So a huge congratulations to you that you even continued going down that path, cause many of us that's where we stop because we just don't have the time.

Jenny Benitez: 16:23

And then to your point with the funding and resources. I have medical insurance but it doesn't cover everything. And you know, at I'm at a point in my endometriosis journey where um surgical intervention is necessary and I'm meant to have a partial hysterectomy. But while the insurance is going to cover some of the medical expenses of the procedure itself. There's still some that I'll be responsible for, but it's the loss of wages that will be a problem for me, because I don't have disability benefits where I am and I'd have to rely on the state and I'm'm you know, I care, I'm I'm you know providing for my family. So there's all these complications that you know women are facing on their treatment journeys that delay, delay diagnosis and then delay treatment because we just it's it takes so long to get there. And it's not just you go to the doctor and we're going to send you for a bunch of tests.

Jenny Benitez: 17:24

Like no, that's not how it works. We have to actually do like what you said with that very special drug that they wanted to put you on, that was more expensive. You have to go through all these barriers to get there. And it's like, well, I don't have the time or the energy or the money to continue to do this. People have or the energy or the money to like continue to do this. Like people have jobs, like I'm fortunate that in my agency and I work from home, but like that they are okay with. Like yes, okay, you have to go to a doctor's appointment, pop in and out. If you're working a minimum wage job and you don't have that kind of grace, you can't take time off like that. You will lose your job. Well, what are women supposed to do?

Stephanie Berman: 18:07

There off like that you will lose your job. Well, what are women supposed to do? There's no support for that. It like totally blows my mind, yeah, yeah. Well, the Aziza project, you know, isn't tackling kind of the wage loss portion of it. Yeah, that is part of the reason why we decided that we are going to pay for travel expenses, airfare and hotel, so that that doesn't end up on a credit card at 29.99 percent interest rate or or it's huge maybe that's the barrier that would keep them.

Stephanie Berman: 18:29

If, if the aziza project said we'll pay for your virtual consultation and we'll pay for your, your face-to-face appointment with the doctor, but you are responsible for your travel expenses, what if they're already dealing with so much debt they can't qualify for? A credit travel expenses on yeah so. So that's the reason that that's like the second leg of our stool it's very, it's very.

Jenny Benitez: 18:54

Um. I feel that I I can understand women who just accept their fate almost and get deflated and are just like I just I don't know what, I can't do this and I don't have time to really deal with this and it's a very unfortunate part of our system and our society and the way things are built. I've been seeing quite a few articles and posts recently of women highlighting that. You know, women are not part of clinical trials and most of the time when you hear like, oh, clinical trials on an X amount of people or whatever, it's actually a majority of men and women are often excluded from clinical trials because they don't want to have to deal with. Like you know well, our bodies are biologically different from men's. We have different hormones, there's all different things that happen in our body.

Jenny Benitez: 19:46

So a lot of the times, what's being quoted to us by medical professionals is not really based on women. It's actually based on men, and thus we don't really know the long termterm effects of I'll actually put this out there even like vaccines, we don't actually know long-term effects of vaccines on women's reproductive systems until it's released into the public and we're all taking it. Yeah, we truly don't know, it's this massive, these massive barriers that exist in healthcare and it's like wild. One thing that I did want to highlight. I actually think it's really awesome that you found Dr. Was it Baba, dr, bab, bab, dr Bab. I think it's very cool that you found him on Instagram.

Stephanie Berman: 20:31

Yeah, yeah. So he's still very active on Instagram. He's got his own profile. Like I said, it's drcorey C-O-R-E-Y-B-A-B-B is his Instagram handle and his TikTok handle. He's actually he does both. I think he films on TikTok and pushes it to Instagram. So, yeah, go follow him. He's fantastic. Yeah, go follow him, he's fantastic. And yeah, he's been a bulldog.

Stephanie Berman: 21:02

Like I said, like this was, you know, october 2022, I started working with him. So it's been about two years since I made my initial contact with him and he has not given up on me and it's still like I'll call and like he has a very small staff because it's just him, and then his wife is like the CEO of the practice and they've got a nurse that works with them and an office manager. I think it's just those four and they all know who I am. I mean, I've traveled. I live in Southeastern Washington state and he's in Tulsa, oklahoma, and I've been there three times since January of 20, like including January 2023. So, and we have been there three times since January of 20, like including January 2023. So, and we have a fourth trip on the books now. So October, we'll be making our fourth trip. Hopefully we'll be able to make some more progress.

Stephanie Berman: 21:51

But I actually took a new product to him that I found out other doctors were using for a similar procedure to what he had already done on me several times or a couple of times, and I said, well, what about this? He's like I've never heard of it. I'm like, go research it. You know, this doctor that I know you know of in Arizona is using it and he's using it successfully. So so yeah, it's, it's fun to have that sort of relationship where I can take something from him and say, have you heard of this? And he jumps on it and looks into it.

Jenny Benitez: 22:21

That's definitely a marker of a great doctor, and something that I know is starting to take shape in the medical industry is shared decision making, which is it sounds like this is what Dr Babb is all about. So listeners, share decision making basically is the process where you go to the doctor and the doctors aren't just kind of peppering you with like, all right, what are your symptoms, here's your prescription. Go ahead and be on your way. They actually have a conversation with you and say, okay, this is what your, this is what your symptoms are, this is what I think your disease is, this is the information I want to share with you and these are your options, as opposed to just giving you one option, path and the term is shared decision making, because you're supposed to be part of the process. She advocated for herself, even in the face of people being gaslighting and, honestly, being very rude and not professional. It sounds like in a lot of cases, she still continued to advocate for herself because, honestly, at the end of the day, if we're not doing that for ourselves and we're not doing research on our own and I know everyone's short on time but if you're not taking that step, then you really can't get adequate care because you're not being part of the process. If someone just tells you to do something and you do it but you don't really understand the why behind it, you don't understand how it's actually going to affect you down the road. That's an issue.

Jenny Benitez: 23:54

I've had many doctors where I'm like kind of the pain in the butt patient and I come in and I say okay, and I'll give them sometimes like I, sometimes I test them out, stephanie, and I'll like I won't tell them how much I know. And then I'll just say, hey, these are my symptoms and like you know, and I'll give them the broad strokes. And then I wait and see what they say. And then I'm like aren't you gonna ask me about this, aren't you going to ask me about that? And I'll start kind of poking at it because I'm like oh, you mean, you don't want to talk about X, y and Z as a treatment option. And they're like what do you do for a living? They immediately are like why are you asking us these questions? But I can't help it because I'm like you all they I've said it on many, many episodes you have to advocate for yourself.

Jenny Benitez: 24:44

We cannot just accept what's being told to us, because that's really where things go wrong. You really do have to look into it and, honestly case in point, I'll use younger Jenny as an example. The first time I heard the word endometriosis, I was 26 and I had went in for surgery for a cyst on my ovary. And when I came out, the doctor said and long-time listeners, you've heard this a couple of times, but I'll just say it anyway the doctor said to me like oh, we got the cyst out. You're all good, by the way, we found endometrium on your uterus, but we got it all. And then that was it. Like that was the first time I had heard that word and that was the only time I had heard that word all the way until 2021, when I started doing the work that I currently do now. And then I made the connection like, oh, my God, I have endometriosis and this is why all these things have been happening. And this explains some of the symptoms that I found out about I've been experiencing since I was 10 years old and I had no idea. I had no idea what it was. So it's making me I will say this it's making me more mindful as a mother to my daughters, because there are things that they say to me sometimes that I'm keeping an ear out for, because endometriosis is a hereditary disease and you know that means most likely my mother had it and she probably never knew. And you know, it's just one of those things that, like, people will just not realize that they have it.

Jenny Benitez: 26:16

And, stephanie, you made an excellent point earlier too. Women symptoms that women get, like itching, is across many disease states. Yeah, so it's it's. It's hard to like pinpoint it, cause I've even had experiences where, like, I will plug in a bunch of symptoms into Google and I'm like, let me see what pops up here, and then you get like the whole list of things and you have to kind of figure out what, what am I doing from this list and where am I going from here? So it can be very overwhelming for people.

Stephanie Berman: 26:47

Yeah for sure. So, like I said, and like Jenny just said, I had a whole list of symptoms. You know, I had the itching, I had the burning, I had the pain with intercourse. You know you name it, I had it. And so how do you start to even start to untangle that? So, like even on my, my first visit to Tulsa, I'll tell you how my visits to Tulsa have kind of progressed.

Stephanie Berman: 27:11

And part of me is like why didn't we do all of that in the first trip? And it's like that would have been way too much to do. That it, yeah there's. You want to peel it back layer by layer. So the first trip we did a nerve block, diagnostic nerve block, and, um, uh, pelvic floor botox that's what we did the first trip. Um, and I felt great for like five days and we thought it was the nerve block and, and I still kind of think the nerve block played into it.

Stephanie Berman: 27:44

But what we later discovered and I'll jump forward a little bit was that my central nervous system has become so sensitized to being in pain that because they knocked me a little further out than what Dr Bab normally does with his patients, my central nervous system got a break during the procedure. I was probably only out for 15 minutes because it doesn't take very long to do all this stuff. But I had noticed the same thing after my hysterectomy, when I was out for an hour and a half. I got three weeks of no vulvar pain, and so it took until uh, april I think, um, this April, when I finally no, it was this year anyway. So somewhere in this year I just took everything, all of the things, to Dr Babin. I'm like my vulvar symptoms disappeared under these very specific conditions.

Stephanie Berman: 28:44

What is the connection? And yeah, I think I emailed them on like a Wednesday and I didn't hear anything back until Monday, and so then the office manager emailed me back. She's like hey, sorry it took a little bit to get back to you. Dr Bath wanted to take the weekend and think over your questions, and that's when we realized that, oh, it's, it might be my central nervous system. So he started me on a medication to treat that, and my central nervous system has been able to overcome those feelings of pain that I'm still having. I'm still having them as I'm talking to you here, but because my central nervous system has been calmed down a little bit, um, I'm able to be way more productive in the mornings that I I have like. I can't even remember when I've been this productive in the morning last, so I'll have to say go ahead.

Jenny Benitez: 29:47

I have a question for you. So when you say like your central, the central nervous system, was was almost overloaded, was it like you were desensitized or was it like it was so used to being in pain that it was like exhausted?

Stephanie Berman: 29:58

Yeah, it's so used to being in pain that it's just totally exhausted and everything hurts. And so I've been working. In conjunction with all of these visits to Tulsa, I've also been working with a really fantastic pelvic floor physical therapist who has training in um uh, methodology called counter strain and um. Counter strain is very similar to what a like an osteopathic doctor would use. Um, ironically enough, Dr Babb is also a DO Um, and so he's like, oh, counter strain.

Stephanie Berman: 30:31

I don't know counter strain, um, but counter strain has been able to help my body to recover and work through all of the different areas of tension in my body, and we still have way more work to do, but we're getting there. And, like I said earlier, it is like peeling, peeling back the layers of an onion, and you just kind of have to go for the first one. So that's what we started to do with Dr Babb. You know, first we we discovered, you know he did a very comprehensive pelvic floor evaluation before gynecologic exam, really before he did my procedure, and that's when he discovered, oh, you have hypertonic pelvic floor dysfunction. So there's my first diagnosis, which this nerve that's irritated in my pelvis runs through the pelvic floor. So the pelvic floor has been like we're just going to squeeze around this nerve and sit here and the nerves like I don't know. So then? But of course irritated nerves can cause itching. There it comes back. Is your itching an yeast infection or is it an irritated nerve, or is it atopic dermatitis?

Jenny Benitez: 31:42

Right, as soon as you said the symptoms earlier, by the way, in my head I was like, oh, I can name three things that I already think that it could be, and it's none of the things that you have. And just for the listeners, quickly, I just wanted to say pelvic floor physical therapy is a treatment to help address dysfunction in the pelvic floor muscles, which actually happens more often than we realize because it's not diagnosed. All right, I just wanted to put it out there. If you look it up, if you happen to, if you're hearing me and Stephanie talk, talk, and you're saying to yourself like, oh, like, I am noticing consistent issues like, or I'm noticing that I actually have consistent like X, y and Z, just look up anything that we're talking about and get some more information on it, because it's going to be incredibly important for your future and even your children's future, cause whatever you have could be hereditary. You got to always think about that, stephanie, one of the things that I wanted to share with you too. I think that in some ways, because in listening to you about, like, your central nervous system, I've said to my husband at night I will, when I lay down, I massage my abdomen and I cannot tell you the amount of relief I feel when I start to do that and I have a little massage gun and I'll go like I start with my hands to loosen it up and then I take the massage gun and I start going over it. And the first time I did it I only recently I think it might've been actually around the time you and I chatted our first time I only recently started to do this and the first time I did it I started crying and I said to him I was like I don't think I realize how much pain I'm in. I have no idea that I'm actually in quite. And I said to him the other day I was like the day that I'm able to actually get a hysterectomy, I'm probably going to be so relieved and I'm not even realizing how much I'm walking around in pain all the time, because you know, I'm a woman and I'm coping and I actually this is actually a little bit funny.

Jenny Benitez: 33:39

I was talking with somebody earlier today, another, another woman, and she has this she has this terrible health situation with one of her eyes and her eye like patched and it's horrible, and she could tell me all these horrible things that are going on. And then I was like why are we talking right now? Shouldn't you be laying down? She was like oh, it's okay, I can function with just one eye. And I'm like, oh my God, what a woman thing to say.

Jenny Benitez: 34:00

What a woman thing to say Like, oh, it's okay, I can function still, don't worry about it, I'm all good. And it's crazy because we're walking around with all these things happening to us and yet we're still doing what we're doing and we're still accomplishing what we're accomplishing and it blows my mind that we're all able still to do this. But yeah, I wanted to point that through, line out that I had noticed it recently that I must be in such a significant amount of pain all the time and I don't even realize it until I lay down at night and I start to massage and release my muscles a little bit and that's when I start to get relief and I'm like, oh my God, I didn't realize how clenched I was all day today.

Stephanie Berman: 34:43

Jenny, let me ask you a kind of a nosy question, because I didn't ask this when we before and you haven't hinted at it yet in the podcast Did you ever have a C-section? Okay, so here's the thing is scars actually can hold emotions Like it's weird. So part of like that massaging that you're doing on your abdomen, if you're anywhere near those scars or the scar tissue that's coming off of those scars, and if those C-sections were under less than planned for or ideal circumstances, your body may be holding emotions like in those scars. And I know it sounds weird, but I've seen it in my own body how, like I have some scars on my abdomen not from C-sections or anything like that, but from other previous surgeries and like scar tissue up here behind my ear from a shunt, and that I got put in when I was 11 months old and I still can't bring myself to do what you described on those scars to help loosen up that scar tissue because it's so emotional and I'm starting to cry just thinking about it.

Jenny Benitez: 35:49

No, it's okay. I cry on the podcast quite a bit. The listeners know this. I think I released an episode the other day and I was crying. You know my son.

Jenny Benitez: 36:00

Neither C-section was terribly traumatic, because I've heard some stories of others. My daughter's, though, was definitely more difficult and a little bit scary. It was scarier because my pregnancy with the girls was was incredibly high risk. My son was born in 2016, and I had a C-section with him, and then I got pregnant immediately, like four months later, which is, yeah, it's you're. So when you have a C-section, you're supposed to wait a full year before you have a have another pregnancy, because your uterus needs time to heal from being opened up, and I got pregnant when he was four months old, and then, when we went to the doctor, we found out it was twins, so that already put me in a whole separate category of your uterus could burst open. Your uterus could burst open.

Jenny Benitez: 36:54

The other part that was not so pleasant when I went for my C-section with my daughters was because I was considered obese when I was pregnant with them. The anesthesiologist was incredibly mean in the hospital and flat out said to me while I was on the operating table waiting for them to put the epidural, said hmm, I'm not sure if this is actually going to work for her, but I guess we'll see. Which in my head said I'm sorry, do you mean you're going to open me up? And we're not even sure if I'm numb, like and it did work and I was fine. But it was not a pleasant road with that doctor. He was just very nasty. He was yelling during the procedure Like I wish I had his name so that I could be like you. Like he made it very unpleasant and you know I hadn't actually thought, thought of, I hadn't thought of the scar tissue.

Jenny Benitez: 37:54

It's interesting that you brought that up Because I think it was just within this week, a day or so ago, when I was I don't know if I was getting out of the shower, I was doing something where I was like putting pressure on my, my stomach, where the scar tissue is or where the scar was, and it still hurts, it's still sore, which is I didn't even realize that, like you know, the scar tissue could cause that, I guess. Is the scar tissue causing the soreness? Is that like a or do you? I have to look into it further and listeners, like if you're listening and you happen to know, like you can message me on it, because I actually meant to say that to my husband the other day like I grazed my hand over the area and I was like Ooh.

Jenny Benitez: 38:32

I was like why does that still feel sensitive? I'm like it's been eight years since I've like seven years since I've had a section almost eight years Like there shouldn't be anything there in my opinion. Like at this point, if anything, all the nerves should be dead. But it's still very sore in that area.

Stephanie Berman: 38:51

Yeah, like I know, like I mentioned my shunt behind my ear earlier and I know that scar tissue still causes me issues and that's been there for 38 years now. Um, so I think it's just our bodies, you know, doing weird things as they're adjusting and accommodating for stuff that shouldn't be there if our bodies were not invaded by foreign objects and surgeries and stuff like that.

Stephanie Berman: 39:17

like I know, like my hysterectomy scars, they're not painful like maybe what you described. But if you have, if you have some endometriosis that somehow attached itself to that scar tissue, yeah, I could see how that could be. I know I have a scar on my abdomen you know one of those super old scars from the 80s and my endometriosis surgeon found some scar tissue on the backside, like the inside, and during my endometriosis excision she actually excised that scar tissue. So that's felt better since she did that. But I was like, why does that hurt? There's no.

Jenny Benitez: 40:03

Yeah.

Stephanie Berman: 40:04

And so it wasn't until I got my pathology report or the OR report or something where somebody had mentioned in one of the reports. Oh, she found some scar tissue from a previous surgery and excised that too. I'm like oh, that's why those scars hurt.

Jenny Benitez: 40:20

I'm going to look into it. I've never actually thought about anything of it before and only recently have I been paying. I think it's all these interviews that I'm doing, paying closer attention to stuff, and that was one of the things that I noticed and I was like oh, this is like strange, like this shouldn't still be bothering me. You know, fun, but not so fun. Like side effect of one of my epidurals was that I lost feeling down in one of my feet, like in my heel. There's like no, no, it's just no, there's no feeling there and I like, and I remember after it happened I was like, oh, that's nice, so I'm like I guess I'm just never going to get feeling back because they don't really know and it's. I didn't even like, not until I started having these things done, like it's not an exact science actually, like they can't see where they're putting that needle, like they're hoping they're getting it into the right area, but like you don't really know and that's pretty terrifying, no problem.

Stephanie Berman: 41:13

I was in my second trip to Tulsa too. So we went back to Tulsa to do a longer acting nerve block, which didn't work as well as the first diagnostic nerve block. That lasted for five days and that one had a steroid in it and an anesthetic and stuff to try to calm the inflammation around the nerve. And it's same same thing with the pelvic nerves too, like an epidural goes more into the back but going in through the vagina into the pelvic nerves same sort of thing they don't. They can't see what they're doing. So unless they do like a ct guided nerve block. But trying to go to pain management for pelvic floor stuff is a whole another ball of wax, because a lot of times pain management doctors will be like yeah, we don't treat pelvic nerves, they just don't treat them.

Jenny Benitez: 41:56

Yeah, they don't want to get involved in that area. It's too complicated, we don't want to do it. Good luck, godspeed, on your journey. So if you were, if I'm, you know, young, 20 year old Jenny and I'm experiencing pain during my period, or even if it's not even during my period, if I'm just experiencing abdominal pain or pelvic pain, and what type of who should be reaching out to the Ziza Project? Is what I'm getting at Like what? Who should be reaching out?

Stephanie Berman: 42:31

So right now we're actually not covering endometriosis. We just don't have the funds yet to cover injuries of that magnitude. Because here's what I haven't described yet at all is that so many of these specialists who need to spend an hour with their patients to be able to figure out what's going on, can't afford to keep their doors open and take insurance. So because insurance will pay more for four 15-minute appointments than they will for one one-hour appointment, and the doctors need to spend an hour with their patient to figure out what's going on, so they end up not taking insurance or, like in the case of endometriosis, there's no CPT codes for a lot of the specifics of the procedure and so they end up not being able to get reimbursed from insurance for doing those specific things.

Stephanie Berman: 43:24

And so we started because of my journey, and by the time I started the Aziza Project I had solved my endometriosis issue and I was dealing more with vulvar-type issues vulvovaginal-type issues, we'll say. That's where I started with the Aziza Project. So we are specifically dealing with hormones, nerves, muscles and skin-type issues. Right now I am hoping to grow the ZZ Project to the point where we can add an endometriosis surgeon and cover those surgeries as well. But we need more money and more funding coming in on a monthly basis.

Jenny Benitez: 44:03

That was very helpful because I want to make sure I'm putting the right people in place For the listeners. What I wanted to just mention CPT codes, that's medical codes. So for every medical procedure, for everything that you have done, what ends up happening is at the end of your doctor's appointment, your doctor hands the file over to the desk staff, all the admins, and then there's going to be a medical coding specialist that person. There are codes for every single thing that happens. So for every procedure that they do at a doctor's office or in the hospital, everything has a code and then it lines up with a code at your insurance company and that's how they determine how is this being paid, how much money are we paying, how much money is the patient paying, and so on and so forth. So just background on that because I want to make sure everybody understood what you said there.

Jenny Benitez: 44:51

Also, they didn't get to see my jaw drop that there's no CPT codes for endometriosis related like situations Like come on, you know endometriosis, it affects like one in 10 women. In the United States there's massive amounts of women who are enduring this disease and like there there's massive amounts of women who are enduring this disease and like there's no CPT codes. Are we kidding right now? Like what? Like, what are we doing? It's, it's still the wild west out there.

Jenny Benitez: 45:22

So, stephanie, I greatly appreciate you coming on and sharing your story with everybody, because I think that there's so many of us that are going through things that are similar and, even if it's just an element of your story, having to walk that path alone and continue down that path without giving up I give up all the time, so to continue banging on that door and finding an actual reason. And then you also took everything you went through and said I don't want other people to go through this, and you are then turning it into the Aziza project, which is it's just an amazing thing. So I really appreciate you coming on with us today and with me today and telling everyone about your story and your work, and then also being there for women who need support. It's, it's amazing.

Stephanie Berman: 46:05

Thank you, it's my pleasure. I really enjoy doing what I do and helping women. It's so much fun to. You know, take somebody like this gal from New York that we that I told about earlier, you know, to take her from not knowing anything about Dr Babb to going to Tulsa to having appointments with him and to just see her go from I don't know what's like. The first time I met with her and we had a zoom conversation. She was just wanting to know about the Aziza project and so I started asking her questions about her story and she's like, nah, I don't need help. I've been suffering since 2019, but you know it's, it's not a big, a big deal. Um, and she's like gaslighting herself out of asking me for help. And I'm like, no, and I got enough of her story to know that she's underemployed and her insurance situation isn't great. And I'm like, look, just apply and I'll tell you if we can help.

Jenny Benitez: 47:07

So it's interesting that she um, she was, she almost was talking herself out of it, which, honestly, when the word hysterectomy first was presented to me, I already knew that that was going to be something. I already knew that I wanted to go surgical. But what frightened me, and actually what delayed me at the first time I was delayed, was that they couldn't do it laparoscopically. Because I've had two C-sections, because I've already had abdominal surgery, she was like it's too dangerous, we wouldn't be able to do laparoscopic, we would actually have to open you up. And I was like, oh, I'm gonna have to think about this now.

Jenny Benitez: 47:39

Like, cause it's frightening, it, you know it, it that's a scary thought. And cause laparoscopic surgery to me is like, oh, this is not a huge deal. But to know that you're going to be opened up was was quite frightening. But yeah, it's, it's interesting, the uh, the talking yourself out of things and kind of feeling, yeah, it's fine, I'm not, it's not a big deal, don't worry about it, I'll be all right. Like the lady I spoke to earlier, it's okay, I can only see out of one eye, we're fine.

Stephanie Berman: 48:10

I know, even sitting here talking to you, I'm still in pain and I'm like okay, I know the medication that I took this morning is helping and I'm not in as much pain as I otherwise would have been, but I'm still in pain and we still don't have a comprehensive set of how do we get me out of pain.

Stephanie Berman: 48:20

We know what's causing it but we haven't found the solution yet, and so I've been gaslighting myself out of another trip to Tulsa. Even though I haven't scheduled in on the books, I still need to book the flight in the hotel, and it's like I really need to go. Do I really need to go? And I'm like, no, I'm in pain. Yes, I need to go.

Jenny Benitez: 48:38

Yeah, you gotta go. Yes, yeah, you have to go. I know I think we all do. We all have that issue. Again for coming on. I really appreciate it. Listeners, I'm going to link all of Stephanie's links in the description of the podcast so you can access. If you or anyone you know is having issues, I strongly recommend, even if you just look at the website, reach out too and say like, hey, this is kind of what I'm experiencing. Stephanie will talk with you and say like, let's hear the story and see what can be done and you know. Again. Appreciate you all listening and thank you again, stephanie and everybody will see you on the next one.

Jenny Benitez: 49:16

Thanks for having me Take care, yeah, take care.