Today my guest experiences pain in her every day life for years after her pregnancies. And then finally, after an exploratory surgery, gets the diagnosis she’s been waiting for.
In today’s episode you’ll here how Kayshaun, a nurse turned business woman and mother of four, uses the pain and trauma from her four complicated pregnancies to help other people to find their voice and consider natural remedies to things like fibroids and endometriosis.
Fibroids
https://www.frontiersin.org/articles/10.3389/fcell.2021.633180/full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9277653/
Why does it take so long to get a diagnosis of Endometriosis
Audio Transcript
Paulette : Welcome to war stories from the womb. Today my guest experiences pain in her everyday life for years after pregnancy. And then finally, after an exploratory surgery gets a diagnosis
This is to show that shows the true experiences of getting pregnant, being pregnant and giving birth to help shift the common cultural narrative away from the glossy depictions of this enormous transition. You can find on all kinds of media to more realistic one. It also celebrates the incredible resilience and strength it takes to create another person, or at least that new person from your body into the world. I’m your host Paulette Kamenecka. I’m a writer and an economist and a mother of two girls. In today’s episode, you’ll hear how kayshaun a nurse turn a business woman was a mother of four is the pain and trauma from her four complicated pregnancies to help other people. What follows is the second part of our conversation. I also include insights about the latest thinking of preeclampsia, shared by a professor of obstetrics and gynecology. We returned to Kayshaun’s story as she’s describing the consequence of carefully investigating her fibroid situation as she’s trying to avoid a hysterectomy.
Kayshaun 1:17
In a way the tumor cancer scare was needed. I wouldn’t have found out what we found out. Oh my gosh, Paulette, he went in there. And found that I have a plate of scar tissue. My uterus is attached to my abdominal wall in the scar tissue was growing through my organs. So he said you Saved your life. He said if you were to wait and have that hysterectomy, you would have woke up a completely different person. He that doctor wouldn’t have been able to do it. You have adhesions connected to your bladder, from your uterus, to your abdominal wall to your intestines, all my other organs and stuff and I’m like, I got scar tissue. attached to my uterus in my abdominal wall. And I was like, that’s why I was never able to walk past that timeframe all this time. And in the doctors were thinking I was crazy, saying it’s just the fibroids and I’m like no, it’s something else. It’s something else. And I’m relieved to have a diagnosis and to have answers but it took 19 years to get this diagnosis.
Paulette 2:31
Okay, so endometriosis occurs when the lining of the uterus starts to grow outside the uterine wall. It can grow on ovaries or fallopian tubes or anywhere inside the abdominal cavity. Right now, the current estimates suggest that on average, it can take 10 years before receiving a proper diagnosis. That’s the current standard, not the standard that Kayshaun lived under. Why you might ask, does it take a decade to figure this out? It sounds like the most common symptom is pain that can register the pelvic area but also in other areas like lower back. It can happen during a bowel movement or during or after sex. Because it can show up in many different places and circumstances. The pain is often attributed to other diseases like irritable bowel syndrome. It’s also missed because the pain during your period is considered quote unquote normal. I’m guessing another aspect of this disease that makes it hard to diagnose definitively is that the only way to know for sure that you have endometriosis is to conduct a surgical procedure where a doctor puts a small telescope inside of the abdomen through the belly button.
So thank goodness for this doctor to figure it out. Right. We went to look right at your description. I went look for it. And are the tumors benign? Are they just fibroids are
Kayshaun 3:48
okay, no. tumors were benign. Yes, they were very good.
Paulette 3:51
Okay, good. So that’s amazing. Maybe you can clue us in in your holistic practice. What do you do for fibroids? I’m going to preface Keisha this description of her approach to fibroids by just saying that everybody is different or expectation may not work for you and then again it may but this is not medical advice. If you have fibroids, please consult your doctor or whatever health practitioner you see for advice specific to your body. fibroids are super common, affecting roughly 70% of women. They are tours in the uterus but they’re often benign and we don’t know what causes a fiber to grow. What we do know some risk factors that include age they’re more common as you age, obesity, Vitamin D deficiency, hormone irregularities and race. Numerous studies have shown that African American women are more likely than their counterparts to develop fibroids.
Kayshaun 4:41
Oh wow. It’s a whole lifestyle for fibroids. If you want to do a lot of detoxing. Do you want to drink a lot of water you want to do colonics castor oil wraps, oh cast oil wraps or packs. It’s when you take like a wool cloth and you saturate it with castor oil and you put it on your abdomen and wrap it up with saran wrap with the heating pad. Oh that is a godsend for boys drinking like raspberry tea detox tea doing detox baths, eliminating a lot of toxins from out of your body. You know what I learned about is we introduced a lot of toxins into our bodies whether fats the products that we use, what we’re eating the cleaning supplies, so I have to get really holistically clean what my whole lifestyle I have stopped chemically processing perming my hair so I went all natural because those those feed the fibroids I started using clean skincare products. That’s one of the reasons I developed my own skincare line. So I can use all natural products, the cleaning solutions that I use, they have to be cleaned and so it was a an overall of everything. And I had my doctors they were right there with me through this whole journey doing ultrasounds watching them shrink and I remember the last ultrasound that I had did they were like they are all gone. They were all calcified and I’m like I can’t believe I did. This. It was hard. It was expensive. But it took like five or maybe even seven years to do it naturally but they wanted to do surgery and I’m like no, not gonna do that.
Paulette 6:29
Yeah, hysterectomy is a major surgery and nice to avoid if you can get
Kayshaun 6:34
the surgery he was like if I was to ever choose to have a surgery, he was like it’s going to be a risky surgery. He was like we have to have every organ that has this adhesion. We would have no specialists in the operating room with us because he said this has been attached for so long we don’t know what’s gonna happen when we pull everything apart. So me the holistic pain and trauma warrior. I’m not having surgery. I’m taking care of this holistically and naturally it’s a very painful process, but I’m working with a pelvic floor Therapist and I’m using massage therapy to manually break the scar tissue.
Paulette 7:14
Wow, that sounds like a big task. But again, to avoid surgery, it seems like it would be totally worth it.
Kayshaun 7:20
It is I’m glad that I’m able to not act so fast and not be pressured by the medical community in doing this naturally because I don’t want to be like one of those other women having surgery. And it
Paulette 7:33
sounds painful, right? It’s painful for us. Yeah. So it’s,
Kayshaun 7:37
I can’t work a regular job fighting to get disability. I can’t stand for long periods of time. It’s growing through my organs when he didn’t just oh my gosh, having intercourse is extremely painful. And I thought I was crazy and losing my mind and it caused the division in my marriage because I started having sex no more because it was excruciating. And I remember one time I was telling my husband I said I feel like
Paulette 8:06
you’re in tissue. Yeah. As you
Kayshaun 8:09
penetrating, and I’m all like you have to feel that. I know you feel it. I’m not crazy. And he’s crazy, but it was like yeah, I do feel that. I was like, it’s like he’s breaking my virginity each time. No like how can you put me through this? And so when I found out about the endometriosis and as the therapist was breaking, you know, massage therapy. I’m all like, why are you going all the way down there? You know, you should be here. I mean, she was all by the labia all and I’m like I said, and he goes all the way down there. She was like, Yes, I can feel it. She was like this growing all through here. And I was like, Can this go through the vaginal wall? And she was like, yes. And I’m like, Oh my God. That’s what I was going through all these years, you know? So to just be raw and honest and open with everyone on your platform. I haven’t been sexually active in eight years. Yeah, I have a desire to be sexually active because it’s, it’s torturous. So you know, I need to continue my therapy and break this tissue down.
Paulette 9:13
I’m so grateful that they figured out what it is. So that you can stop doubting yourself and appreciate that your body’s right. Right you trust what you’re feeling? Good Lord. That’s such a long journey. That’s such a so many things that you learned along the way is there if you could pick out something that I know that this is a hard question. I got something to tell to younger Hey, Shawn, is there something you would tell her?
Kayshaun 9:39
I would tell younger KayShaun to slow down and not yourself because you know, third pregnancy. I have preeclampsia again.
Paulette 9:48
So the third pregnancy. How do you walk into that? I mean, it’s painful to walk. I guess I thought because you were having all this other pain. That was it. You were like I’m done.
Kayshaun 9:58
I waited three years though to get pregnant again. Okay. It was in I had just had my second miscarriage. I didn’t even know I was pregnant. I had found out we had a car accident. A really, really bad car accident Wisdom went out the window we flipped over. I mean, it was just really crazy. And just through the them checking us up and because I’m bleeding and everything and they find out they was like, Ma’am, did you know you were pregnant? And I’m like, No, I didn’t know and they was like you’ve lost the baby. And now we need to do a DNC. And I’m like, I’m pregnant and I lost the baby. You know, I just had a car accident. My kids went out the window. My husband almost lost his limbs. It was just I’m like, I can’t believe this. You know, so it wasn’t as devastating as the first one but
Paulette 10:51
surrounded surrounded by all the other trauma. Yes, you’re right,
Kayshaun 10:55
right. Yeah, but so I get pregnant the third time and I was ready. Actually. I wanted a girl so I was excited to be pregnant this time because I already have two boys. I have my husband. I’m the only female in the home I’m ready for girl but it was towards the end of the pregnancy. I was at school and almost passed out again. And the instructors they call the ambulance and I get to the hospital and they do the test and they let me know that there’s preeclampsia again and it was like I went to surgery right now. It’s very bad.
Paulette 11:32
So first of all, how far along are we
Kayshaun 11:35
38 weeks, so I had a scheduled C section date they just didn’t make it to it.
Paulette 11:40
And when you feel the dizziness Do you think oh shit, this is preeclampsia again, or you don’t it doesn’t feel the same.
Kayshaun 11:46
I don’t even think I thought about that because I was trying to get to my class. That’s all that I was worried about. And I was just like, hey, something’s wrong. You know what I did? well, maybe I’m tired. Maybe I just need to sit down but I barely made it into the class and up the stairs and everyone was all over me. But the blood
Paulette 12:10
work that shows you how eclampsia isn’t like liver enzymes or something like what’s telling you okay?
Kayshaun 12:17
And I was scared this time because they was just like, oh my god you gotta go in my husband got there, but we had a little babies. You know, we got a four year old two year old at this time, and there was no one around and they were gonna make me go into surgery by myself. So I’m calling my dad neighbors. I’m crying. I’m like, I can’t go into surgery by myself. And luckily we had the labor in my bed got there at the same time. And my husband was able to come in there and be with
Paulette 12:49
and so they do another emergency C section which now I feel like you’re like oh, this again.
Kayshaun 12:54
Yes, it’s another emergency C section but my bladder wouldn’t cut this time. I was only in the hospital for three days. I actually was able to walk on the first day. So it was just that scary process but it just made me think why is this happening again?
Paulette 13:13
Too experience preeclampsia once is a huge challenge. To experience it twice is hard to wrap your head around. I took this issue to Dr. jellen, the Program Director of maternal fetal medicine fellowship and associate professor of psychology and obstetrics at Johns Hopkins who provide insight about preeclampsia LSVT show other than this underlying cardiovascular issue that you we can’t measure. Are there visible risk factors that we know.
Kayshaun 13:40
So we now have a lot of risk factors we know for certain if somebody has had preeclampsia in a prior pregnancy, they’re at risk. If they have chronic hypertension, they’re at risk and then a lot of other things so carrying multiple gestations increases the risk probably because of the stress to the body is greater, but underlying diseases such as kidney disease, diabetes, autoimmune conditions, all of those things put patients are at risk as well. Then there’s risk factors that maybe are more moderate, and those include having a high body mass index or having a family history of preeclampsia being over 35 and having in vitro fertilization. Know that black race is also a risk as well as low income status.
Paulette 14:27
So race seems like too big a category to be a risk factor. So that must be a stand in for something else we don’t quite understand.
Kayshaun 14:36
So a lot of studies have really tried to approach race and really break it down by other what we call co founders. So we know that arrays can be associated with other things and can we tease it out and say, Oh, is it these other things and not just race? I think that there’s a lot of thought now that even when you remove co founders and try to control for that, there does seem to be a risk for black women. In regards to preeclampsia, and the United States Preventive Services Task Force addresses this and they see that black persons and lower income not either or, but independently, are associated with increased risk due to environmental, social and historical inequities, shaping health exposures, access to health care, and the unequal distribution of resources. That biological propensities so I definitely think some people will argue all kinds of genetic environmental interactions that could be attributed to race. But people have started really talking about this theory of racism as a risk factor.
Paulette 15:48
Yeah, well, that seems like a super important thing to tackle and a big thing to tackle.
Kayshaun 15:53
I think we’re in a world now, where it is being actively addressed in many, many areas of healthcare. And I hope that in years coming we will have better ways to actually treat it and manage it. Yeah, than we do now. Yeah, I just attended the society maternal fetal medicine conference in San Francisco last week, and one of the oral plenaries talked about treating blood pressure and lower blood pressure thresholds, outcomes, and so instead of using the usual 140, systolic over 90, diastolic they were really treating I think, at 130, systolic over diastolic to see if they could improve outcomes and it does seem like using classification systems such as that could be beneficial and definitely have seen improvements. In the management of preeclampsia as you have developed better antihypertensive algorithms for management and I do think they’re amazing drugs that are very helpful in pregnancy.
Kayshaun 16:58
But everything went well after that, and then the fourth pregnancy, so horrific, I wouldn’t be able to have children after that whole pregnancy. And this is the one with my daughter. I was sick the whole time and extremely sick. I couldn’t hold down or food or anything I just kept throwing up to the point where I had to every other day I was in the emergency room, getting fluids and so even the nausea medication Zofran it was barely working. And so and this is why I say I will take a shot and slow down because I was in nursing school at this time. My dad had just paid $25,000 for me to go to nursing school and he was actually upset that I was pregnant again, because I didn’t know I was pregnant when I joined the program. And so when I found out I’m like, I’m gonna do every thing I can I’m not wasting your money. I’m going to finish this program. I should have sat my butt down and but I didn’t my doctor, she’s like you’re in and out of the hospital. We need to put a Acorda cat in your neck. Because we’re gonna have to have a nurse come to the house and give you IV so that you’re not coming to the emergency room every other day. And I’m like, Well, I’m in the nursing program and I can’t have no part in the no CT cap. In my neck. They’re not gonna let me come. So you’re just gonna have to deal with me coming to the emergency room every other day. How old are you at this point? Oh, I’m 30 man. Okay, and so they’re like, Okay, fine, you know, so I’m steadily in and out and then oh my gosh, early third trimester. Now I’m high risk. Because my kidneys and my liver is starting. They don’t know why. Wow. And they’re like, We don’t know what’s going on with you and they was like your high risk. They couldn’t find out why it’s happening. They were like hopefully when you deliver everything will go back to normal so I’m scared the remainder of this pregnancy can you
Paulette 19:09
feel it to feel poorly? Oh, growing up.
Kayshaun 19:13
I feel weak. I feel lethargic and put I’m in nursing school. You know trying to maintain on the honor roll and everything three kids. This was the most stressful ever in my life. But the doctors all they can say was we hope that you get better. Once you deliver it to the end of that to my scheduled C section date. It’s everything is smooth. And it was like and that’s when they said at this time too because all of this was happening. They suggested that I don’t have any more kids after this. Because I was technically waiting. I wanted five kids. That was my goal. And I knew if they didn’t see that film like because they say if you could see through the uterus, they tell you you can’t have kids anymore because it wouldn’t be safe. So I knew I could potentially have one more but they was like what your kidneys and your liver doing this is not safe. It was like you gotta get your tunes tied after this. So I got them tied, put and burned after that. But I didn’t slow down because I was in this time in nursing school. I’m in clinicals so I’m at the end. I can’t miss anything. Yeah. Oh my gosh, I wish I could go back and tell Keisha to sit her butt down and rest and wait to the next semester to finish because my crazy but I told the doctor I got a good report with the doctor letting them know what’s going on. And I’m like I gotta go back to school. So they I had them double staple me. It the little white strips that they put on those. They put them teach double back, wrap me up and seven days later, I was back in clinicals Wow. And it was so hard but I come I come from a real hard life Wow. I’m used to just pushing myself or I want to get to the next level or succeed or I’m going to be continuing the struggle my C section scar ripped open three times.
Paulette 21:18
What does it mean that it came
Kayshaun 21:21
apart? And you know what I did? I my doctor’s office was resolved Hey, I just busted open go back to school
Paulette 21:45
that seems unbelievably painful.
Kayshaun 21:51
But I was under a lot of pressure, you know, primary breadwinner for the family on ice assistance. I got kids that just can’t call his money. He’s not trying to me so I felt like I have to force myself to do this because I’m thinking oh, life is gonna be so much better and all of this but I was tearing down my body in the process not knowing I’m thinking I’m this strong, incredible woman, but I’m paying for it later.
Paulette 22:23
Well, well, it’s a big theory. You are the strong, incredible woman but it’s not for free. Right it’s not for France. Yes. So when your daughter is born, kidneys and liver go back to normal.
Kayshaun 22:37
And then eventually Yes, I was done by squirting breast and as much as all but I heal but I’ll still remain happy bye walked for too long or anything like that, even though they were just like, oh, let’s try but like but I heal. I was happy to not have preeclampsia again. She’s healthy. I think this was the shortest amount of time I stayed in the hospital which was only in three days which I was kind of shocked. I’m all like, I was high risk the whole time.
Paulette 23:10
I was gonna guess. 10 minutes based on location on schedule, right?
Kayshaun 23:16
Yes. Wow.
Paulette 23:17
I mean, that’s amazing. And so how old are the kids now?
Kayshaun 23:21
Now? 21 1915 and 30. Wow.
Paulette 23:28
You’re still in high school? Yes. Yeah. You look amazingly calm and well rested for that. For everything that happened and for kids in this period.
Kayshaun 23:40
I tried really hard, you know, going through all of these different challenges. It has taught me to look more into myself to more self advocacy, because it finding out to have stage three individuals is 19 years later, it could have been found a lot sooner if I was more in tune myself. We tend to let others tell us how we feel like oh, ignore the pain or is not as bad or pray to God and all this stuff. And it’s like if I would have just told those people to shut up and listen to me. It takes what I’m going through seriously. I wouldn’t have suffered as long but that’s part of my mission now to speak on a sea of those and chronic pain or chronic health issues to stop letting others tell you what you feel. I did a post the other day that is you can’t see or feel or understand my pain doesn’t mean that it’s not real.
Paulette 24:40
I totally agree with you. I’m hoping that with more research into women’s health conditions, endometriosis, fibroids, menopause, for example, that it will be less of an uphill climb for our kids and it has been for many women in our generation. So So is that your work? Now? Is that what you’re doing now
Kayshaun 24:55
right now. So I have the skincare line. And I do a lot of educate. I don’t work in the medical field anymore, but I’m so used to educating others and so I’ve made remarketing a lot of people follow my journey I’ve been speaking about it a lot more so I am transitioning to add and to help others with their fibroids. A lot of people want to follow my journey with handling the endometriosis because I’m doing it holistically so they want to follow me on this journey. So I’m shifting over to share that more and to help others and I left the medical field. I kind of like thought like what am I going to do? I spent 20 years in medical field now. I have to really find myself but I’ve been able to see all the trauma all the pain that I have been through learning how to deal with it holistically is because now I can help others. I’ve had people come as I would share, they’d be like, Oh my God. I thought I was the only one biller with myofascial pain syndrome and you’ve been helping me and then I felt guilty like oh my god, I’ve been keeping all this knowledge into myself and just those close to me. So now I have that that urge. It’s my purpose to help others with their pain holistically in naturally and I fell I have both sides of the world. I got the medical knowledge and the holistic knowledge because of my personal experiences. So I feel good to know all of this trauma all of this pain wasn’t for nothing because as I’m getting better now I can help others get better as well. Do you have a website or somewhere people can find you? Yes, I do have a website it is WWW dot renew you body better.com And that is directly to the website to purchase any type of face or bodies in care products and I think I can kind of say I kind of knew I would end up to this because as I was formulating products for the skin, I was still formulating products to help with the issues like my my bath salts is a detox bath salts to help not only with skin but just overall general detoxing for the body. So I’m excited for expanding into this new journey. So just on your platform, and speaking I’ve never done this before. I’ve never spoke about this story is shared on this intimate level before so I’m so grateful you know for you and your platform that I’m able to share my story and help others.
Paulette 27:29
I totally appreciate it and we’ll put a link to your website in the show notes so people can find it. Yes thank you. Thanks so much to Keisha for sharing all the facets of her medical journey through pregnancy and birth. I also appreciate her candid discussion of fibroids and endometriosis. A huge fraction of women develop fibroids at some point in their lives. And their statistics for endometriosis are estimated to be one in 10 but we don’t hear too much about it. We need to talk openly about it so that women feel confident taking these issues and questions about pelvic pain to an expert to get help rather than muscle through which too many women do. Thanks also to Dr. jellen for her insights about preeclampsia. I find it totally inspiring to hear about all the work that’s being done now to figure out exactly why this happens. And hopefully, someday in the not too distant future, a way to dramatically improve outcomes for women and babies. Thank you for listening. If you liked the show, SUBSCRIBE And leave us a review we’ll be back next week with another inspiring story