Ep. 216: Birth Control Didn't Provide the Relief It Promised, with Kaleigh Van Middendorp

When Kaleigh started having periods in high school, it kept her from class, theatre, and a normal life. But weren't cramps a "normal" part of periods? She hoped birth control would provide the relief she needed, but that wasn't her story. Hear just a few of the ways birth control affected her life and how she eventually found answers. Because of her journey, she is now passionate about empowering other young girls and women to know how to care for their reproductive health.

NOTE: This episode does use the terms sex and sexually active.

GUEST BIO: Kaleigh Van Middendorp is the executive director of Guiding Star, Souland in Orange City, Iowa. She holds a bachelor's degree in social work from Northwestern College and is a certified fertility care practitioner as well as a certified doula. But for today's episode, what matters the most is that she's a woman who knows what it's like to go through women's health issues. 

SHOW NOTES:

Ep. 10: Endometriosis 101

Ep. 53: Is the Receptiva test best for Endometriosis diagnosis?, with Dr. Nicholas Kongoasa

Ep. 72: Naprotechnology, with Dr. Pakiz

Ep. 91: Ovarian Wedge Resection, with Dr. Christine Hemphill

Ep. 139: Preventing scarring, adhesions, and repeat endometriosis surgery, with Dr. Naomi Whittaker

Ep. 210: What to Look for in an Endometriosis Surgeon for a "One and Done" Surgery, with Dr. Patrick Yeung

Woven Intro Sessions

Transcript

Caitlin Estes (00:00)

Welcome back to the Woven Well podcast. Last month I was speaking at a church event outside of Nashville and somebody brought up the podcast and we started talking about it. And one of the first things they said was, I love the stories from real women who have actually walked through a lot of these women’s health and fertility issues. And I was like, I wholeheartedly agree. You know, don't get me wrong. I love our educational episodes. We pack full of information there for you, information that you need and you deserve to know. And I love the episodes where we have more time to explore faith in the midst of the medical or the physical. But there's just something so special about episodes like today's when you get to hear from someone who knows what it's like. So today I'm chatting with Kaleigh Van Middendorp. She is the executive director of Guiding Star, Souland in Orange City, Iowa. She holds a bachelor's degree in social work from Northwestern College and is a certified fertility care practitioner as well as a certified doula. But for today's episode, what matters the most is that she's a woman who knows what it's like to go through women's health issues. And so I'm excited to talk with her about those today. Kayleigh, welcome to the show.

Kaleigh Van Middendorp (01:13)

Thanks so much for having me. I'm excited to be on.

Caitlin Estes (01:16)

Maybe we should go all the way back to the beginning for your particular story. So what were your early periods like?

Kaleigh Van Middendorp (01:25)

Yeah, absolutely. I should preface too by saying I grew up in a household of four girls. There are four of us sisters, all very close in age. So we kind of all got our periods around the same time. And my mom did a great job of explaining kind of what to expect with periods and how to handle those. 

Caitlin Estes (01:45)

That's great.

Kaleigh Van Middendorp (01:48)

Yeah, yeah, she's good mom. But we didn't get a lot of information about like why, like why do we get a period or what things maybe aren't normal with periods. So she's nowadays she'll say to us just like, oh I wish I would have known more so I could teach you more. But yeah, there's so much grace in that as parents isn't there. But yeah, so my first couple periods--I was kind of later than some of my friends. So I remember my first period getting so excited about having it and it happened at school and I went and told my friend and I was all excited and she was kind of like, okay, yeah, good for you. Not quite as excited as me. But that first one, I remember thinking like, this is like a lot more intense, I think than I anticipated. I had lots of heavy bleeding ⁓ right off the bat pretty severe cramping, again, pretty much from the start. So I got my first period around the time I was 15, or around the time I was 14, and then by the time I was 15, I was having to miss school on the days that I had my period. Whether it be because of pain, I was in the bathroom. I was rotating between sitting on the toilet and laying on the floor in pain or my bleeding was so intense and so heavy that going to school would inevitably mean I'm going to bleed through my pad and I'm going to have blood on my pants and that's so embarrassing. So on the two specific days where my periods would be the heaviest I would have to miss school and obviously you're having those about every month and so that doesn't look good for teachers to, for you to be missing that much school. I had to miss activities. You know, I was involved in theater and music and things like that and had to be missing practices because of the pain and the amount of bleeding that I was experiencing. But again, my mom didn't really know, hey, this isn't like normal. I guess she kind of thought too, maybe this will regulate as time goes on.

But yeah, those are, that was kind of my first experience with periods was not, not super fun.

Caitlin Estes (04:04)

Yes, how horrible. And you get in that situation. And like you said, your mom thinks, well, maybe she just has it a little more than others. But how do we know if this is normal or abnormal? Was there any sort of like a crisis point or a point where you were like, okay, something's got to be going on here? Like, there's got to be something we can do.

Kaleigh Van Middendorp (04:13)

Mm-hmm. Yeah, exactly. The crisis point of my actual periods, I had this horrible pain and my mom thought for sure like I was having a ruptured appendix. I was in so much pain. So we actually went to the ER and again I was about 15 at this time and they did an ultrasound and they said no you have a cyst in your ovary. Now I wonder was it actually like ovulation pain that I was dealing with Mittelschmerz and I didn't know and that's what it was, but either way, had very, my ovaries were very cystic. And so that was the moment when I was like, what do I, like, this is, now it's not just my period. Now it's another time in my cycle. I didn't know it was the cycle, but another time in the month where I'm in pain again. I don't, can't live like this. And my mom was with me in the hospital and the doctor had said, well, you know, it looks like you have PCOS. You, with how painful your periods are, you probably have endometriosis, you probably won't be able to have kids. Again, in the ER, at 15 years old, in pain, hearing all these big words, and I'm like, what do these words mean? Google wasn't really a thing back then, so it was like, we're just facing these big words. And hearing a 15-year-old be told, you might not be able to have kids, your best bet for treatment or management of symptoms really is going to be to go on the birth control pill to regulate your cycles and also will give you a prescription ibuprofen or like painkiller medication that you can take so you can function on on your periods. So that was what I did yeah when I was 15 years old.

Caitlin Estes (06:08)

Hmm. Yeah, because you want relief. mean, what else would you do? Your mom has been so intentional about educating you all and getting you support, you know, taking you to the ER. And so who wouldn't say, okay, this is going to take your pain away. It's going to reduce it. It's going to help you live life and go to school. think, you know, you're one of many, many, many who would go ahead and get on the birth control to help with that.

What was that like for you? Like as a 15 year old starting to take birth control, you're in high school, I don't know. I don't know if we always ask a young girl what it's like to be on birth control, but what was that experience like for you?

Kaleigh Van Middendorp (06:55)

Yeah, like you said, you trust the doctor, right? They're sitting in front of you, they're giving you these diagnoses, and then they're saying, this is what's gonna help. So you trust the doctor and you go, okay, yeah, obviously I'm gonna do this, because it's gonna make a difference. But also it was embarrassing because I was not sexually active. So for me, birth control meant I was sexually active. I had other friends who were sexually active at the time. I knew of kids who were sexually active and birth control was, we had the sex talk at school. It was make sure you're on birth control, all these things. And so I felt a level of embarrassment, even getting my prescription filled. I was so embarrassed to go to the pharmacy and ask for a birth control prescription because I was like, I felt the need to clarify it and be like, it's for my bad periods. Like I'm not just having sex. So there was it was a level of embarrassment but also a level of hopefulness I think too. Thinking that potentially this could end the pain and really give me a better quality of life overall. So there was some hope in there too.

Caitlin Estes (07:41)

Yeah, yeah. And how long did you end up staying on birth control?

Kaleigh Van Middendorp (08:03)

Yeah, so I was on and off a couple of different birth control methods for about five years, so until I was in my 20s because--and I kept switching to different ones--because they wouldn't work. it would sometimes they would reduce the pain for a little while but then the bleeding was still so heavy so then they switched me to another one and then I started to gain weight and so they switched me to another one and then I started to get acne and they switched me to another one and then I developed right around the time when I was 17 I was diagnosed with depression and anxiety and so then they had to switch me to another one because I was put on a medication to help manage those symptoms which now that I'm cycle tracking and understand, I can see those depression and anxiety symptoms when they're coming is when my progesterone is the lowest. And so I know that it's a symptom that can be treated. Not that all depression and anxiety is a simple management system. I believe that there are medications for a reason, but in my specific case, I could see that correlation happening now. But yeah, so I was on a variety of different methods until I was 20.

And yeah, so it was just jumping around from, let's try this, let's try this. That whole time also being on prescription strength pain medication to the point where in my 20s I was told your kidney levels are not great. You have to stop taking that medication. And now for the next couple years, you have to be really, really careful so that your kidneys continue to function well, because at that point I had damaged them because again I wasn't only taking it during my period I was also taking it when I was having cyst pain or what could have been ovulation pain at the time as well.

Caitlin Estes (09:59)

And it's so interesting to me because so many OBGYNs will prescribe birth control for this reason, but then you have all this continued pain, you're still having heavy bleeding, you're still having all these symptoms, you're having side effects from the birth control itself, you're on prescription level pain relievers that are affecting your kidney function. At some point you think they'd say, okay, well the birth control isn't working.

Let's think outside the box. Was it the OBGYN that finally was the one to give you another option or did you get those yourself? What made you stop the birth control and look elsewhere?

Kaleigh Van Middendorp (10:39)

Yeah, it was crazy making, you know, you make another appointment and go, Hey, I'm still having these symptoms. You almost feel guilt, not guilty, but you almost feel shameful like coming in and going, Hey, it's not working for me. Um, and, and feeling like I must be doing something wrong where it must be my fault that this isn't working. I was not, I was not given any other options when I was in my, yeah, when I was 20, um, my sister at the time was married and was going through some infertility situations. She started working with a Creighton model practitioner to learn the Creighton model and in her, even in the intro session, you know, the 90 minute like overview of what the Creighton model is all about and some biomarkers that can indicate deeper issues. She goes, I had to call you because I immediately said, this is Kaleigh. Kaleigh's dealing with this and she needs to get this treated. And hey, there's, there's, this could be something serious that needs to be treated. I had already kind of given up hope that, you know, this is going to be my life and I probably won't be able to have kids and you know, that had kind of been what I accepted. But yeah, my sister was the first one who was like, this sounds like you and I think you should meet with somebody.

And it was really validating because within the first cycle of charting with Creighton, I brought it to, you you chart for two weeks and then you bring it to your instructor and you chart for, so I had four weeks of charting and my instructor looked at it and goes, have you always experienced this? And I said, yeah, this has been my bleeding since I started having periods. And she was the first person that looked at me and went, I'm so sorry. And I can remember being like,

Like that just touched me to be like, hey, this isn't a typical experience and this shouldn't have been your experience. Because at that point there was only about one week of my cycle where I wasn't bleeding to some extent. I would have two weeks of bleeding around my period and then about two weeks of bleeding after I ovulated.

So was just red stamps. I remember being like, I'm never going to be able to use any color stamp. But that was, yeah, so validating. And then immediately meeting with a napro doctor and again being told, I'm so sorry, you've had to go through this. And he was very quick to say, I think you probably need surgery.

Caitlin Estes (12:45)

Yes.

Kaleigh Van Middendorp (13:05)

We can try to do some testing, we can try to do some treatment, but I do think doing an exploratory surgery and seeing if there's endometriosis that needs to be removed will be a good first step for you. So that's what I did. I had my first endometriosis removal surgery and the changes were immediate.

It was shocking the next cycle, not having crazy bloating. My bleeding was regulated. I was also put on progesterone for post-ovulatory progesterone then too. And then my moods were so much better. didn't have the, at that point it was diagnosed as PMDD in the days leading up to my period. Didn't have those crazy, crazy symptoms. So to see that immediate change, it was a little bit of grief there to be like, can't believe I've lived six years now like this when there was a solution.

And then that made me so passionate and made me want to become a fertility care practitioner because I saw how if somebody would have told me when I was 15, this isn't normal and it can be treated rather than just being handed a band-aid method of birth control and painkillers that my quality of life would have improved.

Caitlin Estes (14:05)

Mm. Yes and you weren't trying to conceive at 21 years old when you had that surgery and that just goes to show that you deserve the best care possible regardless of your age, regardless of your reproductive goal. Like it's about you as a person, as a human being, you deserve that. I mean and so thank you for being honest about the grief that you felt after actually feeling better, know, having the surgery, getting on the progesterone, your life is transformed, but you also felt that intense grief of why did have to wait so long and why couldn't I have had this given to me earlier? I love that you channeled that into passion for other women and educating them. That's really beautiful.

Kaleigh Van Middendorp (15:07)

Yeah, thank you. And my mom has said that too. She said, I wish I would have known so I could have helped you. And it was like, you did the best with the information you had. So that's what makes me a passionate educator and advocate for cycle awareness because I do think we just accept this is the way that it is and it has to be, but it doesn't. And yeah, like you said, you're deserving of a good quality of life and you're deserving of treatment ⁓ even at 16 years old.

Caitlin Estes (15:16)

Yes. That's right. That's exactly right. So if you could say one thing to, you know, maybe a 16 year old who is struggling like you were, or maybe their mom or aunt or leader, you know, somebody in their life who may be listening to this and has a young girl, you know, maybe even younger than 15, 16, who's just starting periods and going to be on the lookout for this, you know, what would you say to them?

Kaleigh Van Middendorp (15:58)

I would say don't be scared to advocate for your needs. Your provider works for you. And if that provider, if it's not working anymore, if your provider is not working anymore or the situation is not working anymore, keep asking questions, find a different provider. Really don't be scared to be a burden. That was a big thing for me. was like, I don't want to bother them again. But really when you find the right provider, it makes all the difference.

Yeah, so don't be scared to stand up for yourself and ask for what you need. And also don't be scared to try something a little bit out of the box. Like I said, for me, yeah, like you said, I wasn't trying to conceive. I wasn't in a place where I needed a quote unquote fertility treatment, but I needed a quality of life and trying something out of the box was exactly what I needed.

Caitlin Estes (16:46)

Yes, so well said and I love that. Just to reiterate, you are not a burden and I think all of us need to hear that at some point. You are not a burden and you deserve the best quality of care, period. That comes from God, by the way. That comes from the fact that we are image bearers of God. There's nothing we have to do to earn that. We can't ever lose it. That's who we are in Christ and so you want to have a doctor who believes that and is going to treat you in that way. So, ⁓ Kaleigh, thank you so much. Yes, there absolutely are. You're exactly right. And we've had many of them on the podcast. I'm pleased to say so. Kaleigh, thank you so much for being on and sharing your story and encouraging others.

Kaleigh Van Middendorp (17:16)

Yes. And they're out there. There's really good doctors out there for sure.

Thanks for having me. Love all that you do. Happy to help.

Caitlin Estes (17:36)

Well, listeners, Kaleigh is most certainly not the only one of us who was put on birth control at such a tender age, but she may be one of the minority who discovered that there are alternatives that really get to those underlying issues causing the painful periods or heavy bleeding or you name it. So menstrual cycles are not meant to ruin our lives. If they are, something's wrong. And you deserve to work with medical professionals who can diagnose and treat the why.

Like we just mentioned, we've got those episodes on our podcast. So if you want to scroll back through and find the ones that may be most applicable to you, I hope they can be a great resource. And if you're ready to learn more information, well, we have a monthly introductory session that is available. You can go to our website, wovenfertility.com and remember that our listeners have the opportunity to receive a discount at registration. So check that out.

As always, thanks for listening as we continue to explore together what it means to be woven well.