You Are Not Alone- Faces of Endometriosis

Welcome to She's Crafted to Thrive. I'm your host Nikita Williams, and this show is for all the ladies who are making and creating things that they love. You will hear conversations about the real everyday struggles of juggling life and business while trying to maintain passion and harmony. As women, we have the skill of getting things done, but sometimes we get in our own way. It's here where you'll see that you're not alone. You'll discover that success does not mean perfection. Fear and negative thoughts Thoughts and challenges are all a part of the journey. And on this podcast, you'll find the inspiration and tools you need to have a life and business that thrives.

Welcome back to the She's Crafted to Thrive podcast. I'm your host, Nikita Williams, and I'm so glad you're here. I'm a creative coach and a fellow endowarrior podcaster. Of course, this episode is all about endometriosis. And just not just endometriosis, it's like about dealing with a chronic illness, dealing with life hurdles, and knowing that you're not alone. That's right, I want you to get to the end of this episode and just know that whatever thoughts and fears and things you've had to say to yourself or conversations you've had even externally or things that people have told you about what you're going through, you're not alone. And This is all a part of, part of the reason why I started this podcast, you guys. I really wanted to share my journey and also share other women's journey because when I started going through this, I didn't necessarily have this avenue, I guess you could say. I knew about podcasts and didn't really know about podcasts. I knew about them, but I didn't know about them. Um, and no one knew what endometriosis was. Like, I would ask people and they're like, what is that? It's a little bit different now, but it definitely was a struggle. And I think now we have so many more resources, but there are still a lot of things that are left unsaid. And I would love to share that with you. And I'm going to do that by sharing an episode that I did not release with Amber Lashawn. Amber Lashawn was on the show a few weeks ago and she is a brand strategist And she's just really great. If you didn't listen to the episode, you definitely want to tune in to the episode featuring Amber Lashawn of Brand Girl Magic. And when I initially interviewed her, we did two interview calls. So the one that you heard was the one that's more recent and up to date with what she's doing. The first one I had with her, she was doing something completely— I want to say completely different. She was doing something different with it. With a partner, and they had a change and a shift in where they were going in their businesses. And so we recorded it so that, um, it would match more to what she's doing currently. But that conversation, we had so many amazing things in that episode, like so many things. Like, I was so kind of disappointed that that wasn't going to air, but then I remembered, hey, I can just cut out the pieces and put them here, you know, just cut them into a new episode. And usually, you guys, I do a solo cast every other podcast. This is kind of a mix of a solo cast and just sharing a conversation that I had with another fellow Indo warrior. And so she is going to share a little bit about her journey dealing with endometriosis, and, um, you'll hear some tears and you'll hear some laughter. But most of all, I think you will just hear that you are not alone and none of us really are. So wait a second, it's gonna come in here. I haven't figured out how to finagle this, but tune in for the next, you know, 10-15 minutes and be sure to share this with a friend.

Now we're gonna get to like the personal stuff because me and you are Indo sisters. Yeah! So you guys know, um, if you've been listening to the show for 33+ episodes for over a year, you know I have endometriosis and fibromyalgia. And so Miss Amber is another fellow endo warrior. Yes. And I love having you on the show to talk a little bit about that because of course the journey of having endometriosis for each and every single woman I've talked to has been so different. Most of us have more than this one, you know, monster on our back. So how have you— first of all, how are you doing with that? And yeah, let's start there. I think that's the best place to start.

So I recently had a surgery August 2019. So currently I am managing. I am in a state where it is manageable and I am functioning. So I am able to get a lot more done, which helps with productivity so much. It's changed my social life because now I feel like I can go physically network and hang out with friends again. Because before, I felt like I was in this dark cave alone. You make plans and then you got to cancel plans because you're in such severe pain. And it's— endo has changed my life. And at first it was for the worst, I would say. But I've chosen to look at the opportunities that it has brought me and focus more on that because I wouldn't have met Christina had the life events that happened due to endo before. Not happened. So I have to be thankful that I'm in the position that I am today. But it's been a journey, that's for sure.

You know, that's such a— man, that's a beautiful thing to hear because it is something— because for a while, I know for myself personally, endo, I hated it. It was this thing that just sucked my life. Like, there was a lot of negative, and there still is. Like, I'm not going to lie. I'm not going to front on here and be like, oh yeah, I love endometriosis.

No, it sucks.

It's so stupid.

It's silent so nobody can see it.

Thank you.

And the worst pain of your life. I literally tell people, oh, you want to know what it's like to have endo? Go have a baby. I haven't had a baby, but I'm sure that the pain comes pretty close to labor pains because it's worse than normal cramps. And imagine having that pain not on your period.

Okay. And not for a day or 24 or 72 hours of having labor, but like for a week. Or 2 weeks or for 30 days if you got the wrong medication. Let's be real. Okay, so let's— yes, we're very real here that yes, endometriosis is a beast. However, I love that you said you're choosing to look at it differently, and I've had to take that step too. I had to choose to look at it and flip the script. And I was just talking to my husband about this last night. I'm like, my situation is not what I would have wanted it to be in the sense of physically living with this. But man, I've had some really cool opportunities to meet some really cool people. I mean, I have a podcast. I never would have thought about a podcast. It started off as literally therapy in my brain and a way for me to connect with people. Therapy.

Yes.

Right?

Finding something to take your mind off of the pain is therapy of its own. And I'm with you.

Yes. So unless you— if you're going through something similar, if you have a chronic illness, if you— and people don't consider endometriosis a chronic illness yet. No.

I'm like, I'm going to let Amber say something about that. No. So I can go on all day. It is— And the people around me will tell you it is chronic. If you've ever woken up in chronic pain and gone to sleep in that same chronic pain and then been told that there's no cure, there's nothing that we can do for you. Oh, here, get on birth control and continue to pump your body through with these extra hormones here. That's, that's that one. And then what happens when the birth control doesn't work I can't control it. Okay, well then we're going to try— what did they put me on? Depo-Lupron.

Girl, that is the devil. The devil. It is the worst. And I've done so much research on it and I just recently had another epiphany. I'm like, I cannot believe I took that stuff. Why did I do it? Why did I do it? Yeah.

Desperation.

Yes.

We were desperate. We were desperate for our pain to be taken away. So how can you tell me that's not chronic? You know, when I am in pain every single day, on the verge of tears because there's nothing I can do except for have a heating pad or take ibuprofen, but then your system gets immune to the ibuprofen, so then they want to give you something stronger, so they want to place you on narcotics, and that's its whole opioid, you know, epidemic, which you know, what else are you giving me? And then the last option is surgery. And then even surgery, literally, I just had my second one and was told, you know, before surgery, you know, there's no cure. We're gonna remove everything that's there. It is possible for it to grow back, you know, anticipate that within like 4 to 5 years.

Mm-hmm.

And how old are we? We're in our 30s.

I'm not even— I, I, when I was first diagnosed, I was 24.

Wow.

And then it just goes into like a whole rabbit hole of decisions that you have to make for yourself. And yeah, you know, you're starting wanting to start a family and the different options that you have or that you don't have there. It's, it's a rabbit hole. And so I when anybody tries to tell me anything about it not being real or it not being chronic.

Yeah.

Then tell me the definition of chronic because I don't understand.

I love your face right now.

Clearly I'm missing something.

Yeah, yeah, I totally agree with you. Yeah, it is chronic. Like, come on, people. There's no cure for this. This is not something that they figured out. I mean, it's different for every single person, every single woman that has it. It's different. Um, and it's a thing. So how have you like been able to run a business, get a business started, working with a partner, like dealing with this chronic little thing, not so little, in your life?

Um, the biggest part is being open and honest about it. So having endo essentially inspired me to want to be an entrepreneur. I was working my dream job at the time, and I was in community relations working for the Rays, and I was like, oh, this is the start of something amazing. And after about 2 years of being there, I could not physically keep up. I was calling out all the time. And I, after my surgery, when my first surgery, after the pain came back and all the symptoms came back a month later, I decided to quit my job. I had to leave. Because I could not physically keep up with the demand. And I started soul searching at that point and decided, well, if I start a business for myself, nobody else will be able to tell me when and when I cannot not feel good. You know, if I do this for myself, I can control my schedule. Or I may be in physical pain where it's hard to walk Literally, but I can sit in my bed with my computer.

Mm-hmm.

You know, I can still work. My brain is still there. My body is just fighting me. So what can I do to still be able to use my brain and, and have that bring me some fulfillment? Because I was feeling stuck, and that's where the idea of wanting to start a business came from.

Okay, so I'm having like one of those like emotional Yeah, I'm trying not to cry. I'm trying not to cry. So every time I've had someone on the show who has endometriosis, they have said something that I used to— I, I, I, I often heard myself say often, and it's feeling stuck. I had a, a really close friend who reached out to me who has endometriosis, and she expressed a feeling about a certain type of pain that I used to describe exactly how she described it. And I was like, in the moment of her saying that, I was just like, so I'm emotional about this because for a very long time, I didn't talk about it. I didn't talk about this pain. I didn't tell people about it. And so when I get on these conversations with women like you and they're like saying the literal words I have written in journals and I've written in diaries and I have prayed and I have said out loud and I have said to my husband, and I'm hearing the same words from someone else where I used to think, man, I'm all alone.

I'm alone.

No one else feels this way. It just brings up all of those emotions back to the top of a cup and it's just about to bust and trying not to let it come out right now.

That's why it's so important to talk about it, right? Exactly. Because when we were going through it, we felt alone. I didn't see anything about endo on my timeline. On Instagram, on Facebook, and the what? And so it was really like, I'm like you, I'm a researcher. I'm gonna find it. So after I was initially diagnosed, I was down a rabbit hole figuring out everything I could, trying to find Facebook groups of people doing more than complaining.

Like teach me how to cope.

How can I live? Like I don't wanna just be like, oh, I'm in pain. What can I do about this pain? Do you have any remedies? Is there something that's working for you? You know, is this— did diet change work for you? Did, you know, taking a certain supplement work for you? You know, what worked? And I wasn't getting it, and I just wanted to talk about it. And talking about it, you know, I found other people that were having pelvic pain. And what's crazy is that 1 in 10 women have endo, and it takes, what, 10 years on average, 10 years to get diagnosed.

Yeah, I was just looking at a report recently that Australian— and if this is in Australia, I'm sure those numbers are going to change soon because Australia is one of the top countries in the world that has extreme amount of research into endometriosis. But 1 in 7 women in Australia have endo. So come on, y'all, y'all know it's more than 1 in 10. Let's be real.

But, but a part of it is being a woman and pushing through the pain. Right?

Because that's what you're supposed to do.

If I admit to this pain, then that's going to impact my career, that's going to impact work, especially when it's your period, which I— America needs to do something because we need— there's some pain that we have to deal with monthly that men don't have to deal with. And I gotta come and smile on your face? Get out of here. That's a whole nother That's a whole other rabbit hole. But just understanding, like, how if you are having that pelvic pain, to go to the doctor and speak up. It may not be endo, but it could be fibroids. You know, there's other things that it could be. And I just learned that from me speaking up, that there was a few other people that were having pelvic pain and actually started going to the doctor. And I was able to tell them what to say to the doctor.

Exactly.

I was able to tell them how to fight for themselves. At the doctor and say, no, you need to run this test on me. Yeah, you need to do this type of ultrasound, not just the standard ultrasound. You need to give me an MRI if you need to, but you need to figure out what's going on in this pelvic region of mine because it's not normal. And there's no— it's not a huge conversation because periods and your women's reproductive organs are so taboo.

Yeah, no, it's very true. I feel like once I started talking about it, I mean, research is obviously important for you to do for yourself, but once I started talking to more women and reaching out to women, um, and what made it, what made it real for me was like a friend of mine who's not in this, who's serving in a, in a third world country doing volunteer work. She reached out to me because she, I was I was at the depths of despair and I was like, there's nothing I can do. I don't know what to do with this pain. I've— I— at that point, this was like my third surgery and this is before the hysterectomy in 2017. And I was like, I don't know. I was just like, I don't know. This is my life. This is my life. Okay. So, you know, okay, I need to get disability. What am I going to do? By the way, that's really almost impossible, people. Okay.

But anyway, yeah, we don't even qualify.

We don't even qualify because it's not on the chronic even list. But anyway, a friend reached out to me and she said, you know, I have endometriosis.

I was like, oh my gosh.

And she's older than me. And I was like, really? And she's like, yeah, I have it. And here's what worked for me. She didn't call to tell me, like, you know, woo woo me. Like, no, this is what worked for me. Because if you have endometriosis and you have the pain we have, like all you know that you want to have is relief. And so for her to know that instantly when she realized, because I had just one day, I think I put it on Facebook or Instagram or something, and I just like basically said, I have endometriosis and it sucks. Like, it's just like, I'm tired. That's what it is. And she reached out to me and she shared with me things that worked, and that is what is missing But it's getting so much better. I can honestly say after watching and being on social media and things like that, there's so many women that are like, hey, I have it and this is how I'm coping with it. They're not complaining about it. They're educating women. There's more and more women that are younger than us that I'm talking to that are like, I have this thing. Well, tell your doctor exactly what you're saying. Ask them this, do this. Because you go to a doctor The doctors still haven't really changed that much. Okay, let's just be honest. There's not a lot of doctors who are going to take you seriously unless you find a specialist who understands endometriosis. It's a night and day situation. But either way, as women in general, we have to speak up about our pain and be forceful about it because no one else is going to stand up for you. Nobody.

So there's nobody that's going to go to bat for you. Like, you're going to go to bat for yourself. And especially with endo, nobody else is going to feel your pain the way that you feel your pain. And so it's really up to you to be an advocate for yourself. And I think it's all about finding resources and doing the research and most importantly, not being afraid to talk to other women about it, even if it's not in a public setting and you're sliding into somebody's DMs about, hey, I see that you're going through this. What is this about? And if you're a business owner and you have a partner like I do, being open and honest with that person. I was very honest with Christina that this is what I'm battling, this is what it looks like. So if I'm having a day, I'm going to let you know. I'm not going to pull away that day, but I will not be 100% myself. I just need you to know and understand that. And thank God I had a business partner that was like, yeah, girl, whatever you need, and checked on me throughout my surgery every single day, reached out to my boyfriend during surgery to make sure I was okay. And that was her understanding what I was going through. And having people around you that can do that is a support that helps you say, okay, I can keep going and I can figure this out and I'm going to keep trying. Like, I'm not going to give up hope that something's going to give me relief. And having a chronic illness is just— it's stressful and it's mentally exhausting, but it's all about how you choose to allow it to affect your life. It can either be the monster that destroys your life or you can give it all the fight back in the world and decide that it will not run your life. It may knock you down. Mm-hmm.

It will. Come on. But you get back up.

Get up.

Get back up. Mm-hmm.

Do it again.

Well, I so appreciate you sharing just a little bit because that's like iceberg. I know because, you know, we really delve deep in this. We could talk about this for years. But, you know, it's really nice that you, you share that and you're telling people and you're sharing it with me. And I know other women will listen to this, girl. I had someone reach out to me recently from the show, um, and I get messages a lot. And that's why I love having women on the show that have chronic illness, period. Whether it's endo, whether it's whatever it is, fibromyalgia, whether it's, um— and yes, fibro is another one of those things that people don't consider chronic. It's chronic people, sickle cell, all the things, whatever it is that you're going through, that you're not alone in it. There are other women that are sitting at home that feel exactly or probably saying the same words that you're saying to yourself. So just reach out to the resources that you have. Don't try to go it alone. I think that's the biggest thing I learned in the sense of it's okay for you to wear your pain on your sleeve sometimes.

Yes.

Like, don't hold that in because you think you have to be this strong person for your family and for your business. Like, do what you can, but don't, don't push yourself away because yourself is important. That's the fight you need in order to, you know, to keep going. So I really appreciate you coming on here, and I'm sure I'll get tons of messages after this because I always do when I have someone on the show that shares their story. I get tons of emails and DMs like, oh my gosh, I need to hear this. So thank you so much for sharing.

I mean, I thank you for having me and giving me a space to share that story, um, and to talk about it. It's something that is near and dear to my heart, and, um, you know, it's, it's a battle that I'm glad I'm not alone in.

Wow, right? Like, I get emotional just listening to this episode, um, just listening to that again, you know, with Amber and hearing again— I, I said it earlier in the intro, like, these are reaffirming things that for so long I had said things to myself like, nobody understands this, nobody gets what I'm saying. And the reason why I say it's affirming is because so many other people, including doctors and even unfortunately some people who were well-meaning, I should say, would say things like, oh, it's just— you'll get over it. Oh, it's just a little thing. You'll be fine. Kind of patronizing, or especially with doctors, oh, it's in your mind. You're just overexaggerating. And to hear other women say, you know, I have the same feelings, I felt I felt like my control was taken away, or all those different feelings. It's just so reaffirming in my head now today to be like, you know what? I knew back then that I wasn't crazy, but I even know more so now that I definitely wasn't crazy and I definitely wasn't alone. And I had every right to stand up for saying no, that's not right. I had every right to keep going and pushing and asking questions and being an advocate for myself, um, regardless of what people were saying or thinking. And it's an emotional thing. It's very emotional when you like rethink about the journey of dealing with a chronic illness. You're not only dealing with a chronic illness, um, like internally, physically, you're dealing with like the external part of the world who's telling you all these negative things, who aren't believing you. So you're not only just fighting to feel well or to be well or to find answers, you're also fighting for your sanity at times, it feels like. And so when you hear stories and you hear other women who are going through similar things, it is truly affirming to know that, hey, we're all on the same journey. We're not crazy. The other people are crazy for thinking we're crazy. And we were right. From the start that something was wrong with our bodies, even though nobody understood what that meant, what that felt like. And so I wanted just to share this particular episode with you guys because I thought maybe I can just like do a whole one later and do one, you know, with her later. But that was so raw. Like, we were both crying during this episode because it's just so real. And I want you guys to always feel that it's okay to heal through tears, through laughter, through talking, through pain, and all those things. And to give you guys an update on my situation, I am currently— I have been seeing a chiropractor who has been amazing ever since I've gotten back to Atlanta, Georgia, and I have seen a definite change change in just like how my body functions. I feel a little better, a little bit better overall. Just once, taking that one step of finding a good chiropractor has helped with some of the pain. When you have pelvic pain, you have a lot of lower back and pain, inflammation, and things like that. And so for me, my last conversation with my last doctor was to go and get pain management, which would basically be narcotics. Something that to help me manage that, and I just refuse to go there at this point in my life. I'm just— I feel like I'm too young, and as long as we're here dealing with this, I don't want to have to deal with that possibility of dealing with pain medicine that way. And I have a really high tolerance of pain. I mean, I've been dealing with this for over, you know, officially over 13 years, so, you know, I I've kind of come accustomed to pain, but I am finding things that are definitely helpful for managing my pain in a more natural way. And another funny byproduct of this is that the chiropractor has helped me with movement and motility in my pelvic area. So it's given me exercises and things like that that helps me just feel better because there's a lot of pain in that area constantly when, when there's a flare-up or whatever that is going on. So if you're thinking of maybe an alternative option, try a chiropractor. That might be helpful. Um, I'm also going to be looking into acupuncture soon, so, and massage therapy. All those things kind of really help because when you're in a lot of pain, your body is constantly in a tense state, and especially in the areas where you feel that pain. And for me, I am constantly in a rotation of every 2 weeks dealing with some type of intense, increased, elevated pain that there's no words to describe, but it's there. And so I have tried food, I've tried diets, and I've tried all these things, but what's really been helping so far are the chiropractor and my essential oils, of course. I swear by those things and just being a little bit more active by stretching and taking more walks and getting up instead of laying down. So if you're dealing with different things, this might be something that might be helpful to you.

Just what's helped me.

A lot of times you hear, like I mentioned throughout the conversation with Amber, is that we hear a lot of complaining sometimes, but not a lot of resources or tools that can help you manage what you're going through. Mindset, like physically dealing with it other than medication. And so we just wanted to be sure to share that with you guys. So I hope this episode was helpful for you. If you have a friend or sister or mother or whoever who's dealing with a chronic illness, and if this is not you, please share it with them. I think it will be encouraging and they will definitely, definitely feel like they're not alone dealing with whatever chronic illness or life hurdles that they are going through. But in the meantime, you guys know what I'm going to tell you. Please go on to iTunes and subscribe, or wherever you listen to podcasts, be sure to subscribe. But on iTunes, leave us a review. And remember, yes, ladies, you are crafted to thrive.