Halley Ceglia Terrell, LCSW - Persistence, Pain & Psychotherapy: A Dual-Lens Approach to the Endo Journey

All right. So can we take a breath? That's a lot of information and really helpful. Being someone who went through fertility, Dr. Singer, heard you, I've been there, I've sat in that space and my presentation changed just now as I was sitting there going, "Oh my gosh, I became the psychotherapist I needed." I'm going to cry because I was really touching. I would sit in my fertility doctor's office and often say, "Well, who can I see for help?" It was about the egg freezing. It was about this. It was about that. Did not expect to cry today. Thought I was healed, not really.

And I got one name and I kept getting the same name and I kept saying, "Well, why don't you have a support group and why don't you have this? " And all those things up, okay? Thank you so much. So here I am. Everyone can find support. I avoided psychotherapy like the plague because I would have to deal with at that point, the 24 years of having endo and having no idea, the gaslighting, all of it. I'm just going to focus on my presentation so I don't cry through the whole thing. I think this is the button I press. There we go. So there I am.

Yeah. I want to work on the in between with people, right? I'm looking for other psychotherapists who do the work that I do. Can't seem to find them all, but we're works in progress. So every single one of you, whatever field you're in today, in your lives or what you're going to become or getting towards, you can bring this lived experience, caretaker, spouses, providers. I'm not going to name everybody, but you can become something because of endometriosis. So my healing was in the diagnosis, but the flood of emotion that came after was so scary that the healing's actually been happening maybe right now. Right? We heal out loud. We talked about yesterday. So I had 15 diagnoses, misdiagnoses. Here they are. Here they are. This would be my favorite drama queen. Hypochondriac. You're okay, Haley. You're too in your head. You're too much. That's just your IBS.

Why don't you go to another specialist and another specialist? So yeah, I think it was like over 45 doctors that I saw since I was 11 years old when I got my period. I got diagnosed at 40, so 29 years to diagnosis. That happened after eight fertility treatments. I had three inseminations. I had three rounds of IVF. I thought, yep, that's it. They're going to take my egg. They're going to take my husband's sperm and we're going to do this. We were, oh my God, 36, 37 when we started, both of us. They're handling them. They're going to make this happen. I had doctors say, "Don't worry, IVF will bypass undermetriosis if it's there." That was after my first round of IVF when I miscarried and I called and I said, "Well, why? Well, why?" "Well, you have unexplained infertility, Hailey. "And I said," No, no, no, no.

There's an explanation for everything. Excuse my French, but F that. "So if you're being told that, oh, there's an explanation. I'm going to not be angry.

So yeah. So it took that all the way to there. Found my surgeon after very many rounds of scheduled gynecological surgery, finding out that laser is not the way to go, that excision should be the way to go. Thank God for COVID because I sat behind a computer screen. I have ADHD like Dr. Sedgkin and I just fixated and I was finding the answers and I will do that for you and your care team should do that for you. And I found my excision surgeon and I received the care that I needed and the diagnosis that I needed. I spent a lot of money, still am spending money. I'm in perimenopause now.

So anyway, I was told I would never be able to get pregnant with my own eggs, all that kind of stuff, right? So you've probably all heard it if you're in that position or you're supporting it, but we take care of ourselves and you can all go get a squishy ball outside because they're super supportive. But if you're not feeling, you're healing, right? So yeah, I was learning to diagnose the world while nobody could diagnose me. I've been a patient for 35 years. I was in school for 12. I've been a clinician for 21 years. I'm going to be 46 tomorrow.

My husband will say, why did you say that publicly on screen? We're pretending we're 36, not 46. And I've had a diagnosis for six years and now I'm an advocate every day. I created the travel light method. Your mental health is just as important. Sometimes maybe even more. I don't know if the word's important, but it can take you down and it can take you down fast if you don't get the help that you need. And that might be a friend. It might be a fellow warrior. It could be someone that happens to be online with you in the supermarket and you're just having a flare or a bad day and they just say, "You're going to be okay." Or maybe those words don't land well, like you're going to be okay, doesn't always feel that great, but maybe there's something that an eye contact gave you.

Selective sovereignty, the flare plan and traveling light, that's just, I don't know where it came from, it just landed on paper and it really came from all the individuals I've gotten to work with as a psychotherapist, yoga teacher and all the things.

And back to it, my mom would often say to me, "Why are you getting all these trainings? Why are you getting all these trainings? Why are you being a reggae master? Why are you a yoga teacher? Why are you this? Why are you that? I love your head shake." Because I couldn't figure it out. And did I use all of it? No. And I would say, "Oh my God, I'm wasting all this money, all this time. I can't find a life partner. I don't know what to do. I'm weird. I'm all these things." And boom, I use every single one of those trainings today to land into this and it just kind of made sense, right? So we can't always control our pathology, but we can reclaim our psychology. Make sense? Right? Whether you have endo or not, there's stuff that's happening within you. Okay.

Selective sovereignty, boundary setting. I had a relationship with my first fertility doctor. I thought he was amazing. He liked me. I liked him. My husband thought he was awesome. We had conversations about sports and cars and what it would be like to have a family one day. Growing up on Long Island, he had that in common. We had all these things, right? Yeah. I never said no to him. He said no to me. He broke up with me. That was actually really hard because then I was like, "Well, now what? Back to the drawing board." Emotional regulation. I'm trained in dialectical behavioral therapy. It's the bomb. It's so good, but we can't do anything if we're running from a dysregulated nervous system. Vagus nerve? Oh yeah, we're going to do that today. If we're in fight, flight, or freeze all the time, how can we then pretend to sit in a doctor's office and hear them?

Part of my work and what I would love all of you to have is what is your care plan and what are you doing before each appointment? Do you have questions? Yeah, okay. Questions are one thing, but how do you stay grounded enough to not start going into the trauma response that says to you, "I'm too much. I shouldn't ask this much. This doctor doesn't have enough time for me. " And wait, if they tell you that they don't follow you or they're not sure, they don't know that research and they don't take that next step to say to you, let me go look into that and get that answer for you. Where does it land? It puts you back into fight, flight. How do you want to feel when you leave places? Can ground you in that moment, that simple statement. Validation is medicine.

My diagnosis is endometriosis. Yes, I'm validated. See, I'm not crazy. I sat with my dad in the hospital. It was July of 20, COVID. They let my dad in without a mask, without a COVID test. I don't really understand why. My dad and I have had a pretty interesting lifetime together. Love my dad dearly. My sister's here. She loves him too. He sat there and we healed because when I came out of that surgery, my body was shaking so bad, you guys. The nurse pulled me out and said, "Are you cold?" And I was like, "I don't know. I just woke up." He's like, "No, you've been awake." I'm like, "No, I haven't. You're the first person I'm seeing." My body was shaking so much and I said, "You have to let my body shake, stop, stopping it. " Issues live in our tissues. You take that tissue out of us, people, you're going to flood emotion.

You have to learn how to reintegrate into your bodies, right? The shake helps it get out. There's actually a method called TRE, trauma release exercises. Super helpful, and it really connects with the vagus nerve also. So there's that. The flare plan. We all know what our flare is, and sometimes we don't. But if you name, I get flares. Not, "Well, I think I get a little bit of a stomach ache or I think it could be this or it's IBS." No, you have a flare. Acknowledge it. It's the same thing as I'm drinking too much alcohol. I'm not going to stop drinking unless I acknowledge I drink too much alcohol or I'm an alcoholic. I don't like that label so much because we're not endometriosis and they're not alcoholics. We have alcoholism and we have endometriosis. So acknowledging. And then the anchor, breathwork, grounding yourself, how do you want to feel when you leave appointments?

That's it. Right there. That right there. Okay? Somebody came up to me yesterday, another speaker and he said, he heard me talking in this bus to go somewhere after the thing. And he said, "What do you think about meditation?" I was like, "Whoa, a lot. I think a lot about meditation." And he goes, "So tell me the research. Does it work?" And I was like, "Yeah. Does it work for pain?" "Yeah. Can you teach me now? ""Sure. Just breathe. You don't have to close your eyes. You don't have to do anything. You could crochet." Another woman said to me, "Well, I used to paint." She was behind. She goes, "I used to paint and I feel like I was meditating. Do you think that was meditation?" "Yes, but I'm not the guru. I can't tell you what your meditation is. "But the whole bus started to talk about meditation and I was like, " Wow.

Yeah, we get to meditate. We get to pause and then approve. The approval's hard. The approval is like, well, I was walking down this path and then I got my period and the pain started. And so I thought I was going to be a runner. I did. I was a horseback rider. I missed a lot of riding because of the pain that I'd be in. Sometimes riding though, that motion made the pain go away a lot. It worked in my hips. It worked in my vagus nerve. I was 12 years old. I didn't know what the heck a vagus nerve was or meditation. Okay. I'm going to take you through meditation. Are we killed with that? Okay. Traveling light, it's the name of my business. 2013, I was working with a healer from India. Dr. Bala, wonderful woman. She said to me, "Are you naming your business?" And I was like, "What business?

I do therapy. I don't want to name a business. I'm not that important. And I'm not. I'm a spec in the world. We all are, right? But we can make a difference." And so I said, "Okay, I like to travel." She goes, "To where?" I'm like, "Well, not really anywhere." She's like, "Well, why is that word on your mind?" "I don't know. "Said," But I read this book called The Little Soul and the Sun. And in that book, it's a soul that says I didn't get to forgive while I was in this lifetime. I want to forgive. "The other soul said," Hey, listen, we've done this agreement before. I'm going to do something really bad in the next lifetime. You're going to have to forgive me. If you don't remember me, you're going to forget to forgive. You're going to go through another lifetime of not being able to forgive.

"We've been here before. You've done the whole let go of this and we've done all these lifetimes, maybe 20.

The light came from a picture in that book that was all dark on one page, and then the next page was one light in the middle, and that's who we get to be. So the traveling light plan is hosting, what are you holding in your body like a parasite, parasite's eating away, we're giving it the resources it needs. Why are we giving so much to these fear thoughts and these thoughts that doctors say to us? And doctors are amazing. They just only know what they're trained in. And someone last night said to me, " Endometriosis diagnosis is like cancer in the 1920s. Endometriosis right now is like diagnosing cancer in the 1920s. That landed. You have to do surgery to find it. I love the mapping. We're getting there. The unbagging, you bring your bag to the airport. It's really heavy. You put it in the measuring thing and you're like, it's not going to fit in the overhead.

I thought that would be easy that I didn't have to go out of the bag check, blah, blah, blah. "So we talk about unbagging in sessions and the illuminating is just that light. So how am I going to help you to illuminate yourself? But the biggest thing, I have a 19 year old, had surgery three months ago, worst endo. Okay. She was on her way to not the right surgery. She got excision within a month of surgery.

She's an ambassador on college campuses in four weeks talking about endometriosis because she just happened to make an endo page on Facebook and someone found her because her healing was happening. So how much time do I have? Like two minutes? Oh, cool. Yeah. Okay. So go ahead and close your eyes. Ground yourselves. If that doesn't feel good for you to close your eyes, look up at the screen. There's a list of all these different things and toolkit that helped me along the way. It's not everything you can do, but it's some. Breathe in to breathe in. Breath.

And breathe out. Take notice of your hands. They carry the world. Relax them. Life doesn't have to be so heavy. One percent change per day for 90 days creates a habit. Do this right here every day for a minute or 1% of your day. And by the day 90, you might feel a little bit better. You may be more grounded to sit in a doctor's office and have that plan in fun of you and not jump into, I'm crazy and I'm too much. I want you to ask yourselves here, what brought you here today? Did someone invite you? How do you want to feel when you leave this conference? And what do you need and who do you need to get there?

Feel those hands come upon your body in any place that you could find. You're not broken. Caretakers, we need you. You're not broken either and you're doing your best. Doctors, you're doing your best with the information you have. My healing happened because I started to forgive the lack of information and lack of research, and instead of being angry that someone said X, Y, and Z to me, just forgave them. Just like that little soul. Take a big inhale and hold your breath at the top. Feel that pause. The vagus nerve initiates. You can have that pause any minute of any day, even in a flare and exhale it out with a sigh. Do not jolt your systems, slowly, slowly enter back into the space, opening your eyes slowly, maybe gazing down upon your body. You're beautiful. I appreciate being here. My story hopefully continues on just as well as all of yours.

These are some resources that you can jump onto. And this is my outcome, you guys. I have two kids.