PMH 32 | Endo

 

Melissa and Siria close out their podcast series on the pivotal moments team with Melissa’s partial hysterectomy story due to fibroids and endometriosis. Melissa explains how she came to terms with not being a mother, her new lease on life, and the importance of advocating for your health.

Listen to the podcast here

 

Endo, Infertility, & Redefining Womanhood With Melissa Robaina

In this episode, we close out our series on the Pivotal Moments team with Melissa’s partial hysterectomy story due to her endometriosis. Melissa explains how she came to terms with not being a mother, her new lease on life and the importance of advocating for your health.

In this episode, we round out our episode by having had Ron’s episode, my episode and now we are going to talk about Melissa. How are you feeling?

Good. This is a topic that I have been talking to people about. I feel it’s a perfect time to talk about it.

Readers, as you may have remembered back in episode 27, Melissa let us know that she had a hysterectomy. We promised you then that we would be talking about this in that journey because as I’m sure you have seen many pictures of my beautiful cohost. You are probably as surprised as I was when I learned this many years ago. I don’t know much about this story. I’m excited to learn it along with you. Let’s start at the beginning. How old were you when you got your first period?

That’s where it starts. I was twelve years old when I started my period. For many women that are reading, having your period was like a right of passage. That was like how you know you’ve made it to womanhood. Out of my little click, I was the first one to start. I remember exactly where I was. I was at my friend Jamie’s house. It was a slumber party and I remember waking up. I had started my period. They were all congratulating me because I was officially a woman. I skip home thinking, “It didn’t even hurt that bad. What is the big deal?”

You would later learn what a burden for the entire of your life that would be but it turned out not to be.

When you first have your period, it’s light. I didn’t ovulate every 28 days as you see in the health books and stuff. I thought there was something wrong with me. My mother took me to the doctor to check up and make sure that I was okay. The doctor said, “You’re twelve years old. Your body needs time to get into the swing of things. Before you know it, you’ll be regular.” A few years pass and I’m fourteen, I still only menstruate once or twice a year, which I find to be very odd. I go to the doctor. At this point, they said, “You’re fine. You play sports. You are very active. There are a lot of athletes that don’t menstruate once a month.” I was active. I was in soccer softball and volleyball.

At this point, you were not sexually active so it wasn’t like you could be pregnant.

I was still a saint at this point. I also realized too that while I was in sports, I didn’t feel that I was like this athlete with 5% body fat and all of that crazy stuff. In my dreams. I still wasn’t ovulating. In addition to not ovulating, when I did ovulate, the symptoms I was experiencing seemed odd to me. I had nausea. I was vomiting. I had severe cramping. I was hemorrhaging along with headaches, fevers and sweats. I would shake.

I remember one day I was in my living room and I couldn’t stand up straight. I was in so much pain. I was killed over. I couldn’t walk. My mother took me to the doctor and they did an ultrasound. They found out that I had PCOS, which is Polycystic Ovarian Syndrome. Women with PCOS produce higher than normal amounts of male hormones. This hormone imbalance causes women to skip their periods and makes it harder for them to get pregnant.

At the age of fourteen, my gynecologist is telling me that when I decide to conceive, which at this point I’m fourteen, kids aren’t even a thought on my radar at this point but it would be difficult for me to conceive but to treat this hormone imbalance, they wanted to prescribe me birth control. Here I am. I’m fourteen years old. I’m starting to take birth control, which is a huge responsibility.

It changes your body even more. I was already going through puberty. It’s already that awkward stage but being on birth control at such a young age, I was already well-developed. I noticed that my hips were starting to get wider. You’re filling out in ways that probably a fourteen-year-old shouldn’t. Everything was fine. I started to have regular periods and I’m thinking, “Awesome.”

My pain subsided. It was doable. It’s not like I didn’t have any pain at all. Around the age of nineteen, I started to notice that I was spotting between periods. Any woman knows that anytime you are prescribed birth control, you have to go in for an annual pap smear. It’s good for your health. It makes sure that everything’s in working order and tip-top shape.

We do have a great number of male readers as well. I want to make sure that you know a little bit more about this. Once women start menstruating, we have to start taking care of our gynecological health. You start regularly taking care of going to the doctor and getting pap smears. It is a very invasive procedure that happens regularly until you die.

Once women start menstruating, we have to start taking care of our gynecological health. Share on X

I’m going to a gynecologist since the age of twelve. You talk about these invasive procedures and they are very invasive. They’re uncomfortable. When you’re twelve and you’re having someone between your legs, it’s a very uncomfortable situation all around.

Also, cold.

Around the age of nineteen, I started to spot but because of my history, I went back in and they started to prescribe me different birth controls. I could never go off of birth control because if I did that, PCOS would come back again. We tried different birth control. We tried branded, generic and different dosages, different milligrams of progesterone and estrogen. My body hated me at this point. Even with trying all of that, that helped briefly but it didn’t fix the overall problem.

Around the age of 22, not only was I spotting still but I’m starting to hemorrhage. It wasn’t fresh blood. It was a copper color. I’ve done research on it. The reason why your body sheds this every month is for pregnancy. That’s what the baby needs to embed itself in but you’re supposed to shed it because if it stays in your system, it can become cancerous.

I was concerned that my body wasn’t doing what it should be doing. I was going to the doctor again because the symptoms I had experienced before were coming back with vengeance. I tell them my medical history and the prescriptions that I’ve been prescribed. The doctors ripped me off. They told me, “What you’re experiencing is what every woman that’s ever walked this planet has experienced.” It was like I needed to suck it up and walk it off. I felt very discouraged because even at the age of 22, I felt something was wrong.

You’ve been having cycles for ten years. Even at the ten-year mark, you know there’s something wrong but at this point, you still don’t have the diagnosis of endometriosis. What happens next?

Around the age of 26, 4 years have passed and I’m a silent sufferer. I go for my annual pap smear like a good girl. The nurse practitioner is performing my pap smear because you don’t need to have your pap smear performed by a gynecologist. It needs to be done by a doctor. Your general or nurse practitioner can do it. I had a nurse practitioner do it. She told me that my cervix was large for a woman that has never had children. It was concerning for her. She wanted to recommend me to a specialist, i.e., a gynecologist.

Before I did that, she asked me to go get an ultrasound done. I go and get an ultrasound done. Those techs are stuck. I’m trying to like look at the tech and they have the best poker face. Even though they might see something wrong, they can’t say anything because they can’t diagnose. The results come back and I have a uterine fibroid. A uterine fibroid in short is a benign tumor.

Could you feel anything at this point?

No, but what I later learned was my grandmother thought I was pregnant because I started to develop like a pooch. It looked like I was maybe pregnant. I didn’t know it and it was like 3 or 4 months along. My belly was growing but I had no idea. When you have a hormone imbalance, you gain weight in the weirdest places. I thought this especially being on hormone therapy for over fifteen years, I thought, “That’s the estrogen. That’s birth control.” I didn’t think that something was growing inside of me. At this point, I’d always seen female doctors due to past experiences I’d had. Unfortunately, the gynecologist in my network was limited to males. I was already struggling with the fact that I had to go see a male.

PMH 32 | Endo
Endo: When you have a hormone imbalance, you gain weight in the weirdest places.

 

I ended up finding one. His name is Dr. Levy and he’s by far the best doctor I’ve had. Anytime you go for your initial appointment, it’s usually like, “What’s your medical history? What prescriptions have you taken? What are your current symptoms?” I remember leading up until that appointment. My grandmother was insistent on going with me. I was like, “It’s fine. I’m going for my initial appointment. It’s not a big deal,” but she was so insistent. I let her go. We get there. He spent so much time asking me questions that I felt heard. He said, “I got the ultrasound back. You have a uterine fibroid. Do you mind if I do an ultrasound here? I have a machine.”

I said, “Sure. I’m already here. Why not?” His tech leaves the room to go get the machine and he’s telling me that it’s very common for women to have uterine fibroids. It’s not an issue. Usually, they’re on the outside of the uterus. When that happens, they can go in and carve them out. It doesn’t impact fertility. You can still live a long life. It doesn’t impact you in any way. I’m thinking that’s what would happen to me. The tech brings the machine in. He is at my feet and puts the gel on my lower abdomen. He’s looking around in there. He’s looking at the ultrasound and then rolls in my direction. He holds my hand and is like, “I’m sorry.”

At the time, I couldn’t process what he was saying. I thought this was going to be an initial like, “Tell me a little bit about you.” Especially having been dismissed by many other doctors, I thought this was going to be no different. My grandmother started crying. He said, “Unfortunately, your fibroid isn’t on the outside. It’s within the uterine wall. It’s consuming your uterus. It’s a lot larger than what we initially thought. I want you to understand I’m here to be your advocate. Your uterine fibroids are typically benign. That I’m not concerned about. How you move forward is 100% up to you. I want you to know, I back you up no matter what you decide.”

My two choices were that I could go on Lupron. It is a medicine that puts you in medically induced menopause. He’s like, “I don’t want to keep you on that medication for more than six months because you’ll experience like hot flashes and weight gain but you’re also at risk for osteoporosis.” Being that I was 26 at the time, he’s like, “The long-term effects of it are not worth it. However, the reason why I want to put you on Lupron is that the birth control you were taking to treat your PCOS was feeding this fibroid.” That was hard.

How did that feel to know that what the doctors had been recommending this whole time fed the fibroid as you put it?

It even hurt more when he said, “Based on all the symptoms you’ve experienced, I can’t believe a doctor waited so long to do an ultrasound. What is an ultrasound? We could have caught this years ago.” That killed me. It killed me more in the fact that I was pissed off at myself because I knew something was wrong yet I took the doctors at face value and I didn’t push hard enough. I didn’t advocate for myself. That’s where the anger comes through for me.

I can still hear it. Are you still mad about that?

I am but I find that that’s also a dark place to be because there’s nothing I can do about it now.

He said there were two options.

The first one was I can go into medically induced menopause. His hope for that would be that by starving this tumor, it would shrink down enough to where they can go in and cut it out. What he later told me was that if I did decide to pursue this option, women who get uterine fibroids often have more than one or they come back again and more frequently. He is like, “If we did this option, you would have to get pregnant soon. That also means you’d also be an at-risk pregnancy because wherever I make that incision in your uterus wall, that’s going to be weak. As the baby grows, it’s going to put pressure on that. There’s a potential that it could rupture, that could kill you and the baby.”

That was one option, which it’s like, “This is a roll of the dice of whether the Lupron may or may not work. It could kill me and the baby.” I’m in a relationship with my now husband but he wasn’t my husband at the time. I was like, “Do I want to have a baby just because that clock is ticking?” The second option was the partial hysterectomy. A partial hysterectomy is where they remove the uterus but you’re allowed to keep your ovaries, which helps with that hormone balance that women need.

PMH 32 | Endo
Endo: I wouldn’t want to bring a child into this world just because that clock is ticking.

 

You know that you’ve been having these health issues. It sounds like there was a lot of anger toward not advocating for yourself and now you’ve got these two options. What was that like knowing these are the two options?

It took me some time to process. I still had not shed a tear at this point. My grandmother, on the other hand, is bawling. I dropped my grandmother off. On the way home, I call my mom. My mother at this point was a nurse. I explained to her what the doctor said, what he found and what my options were. My mother, who is typically like, “You need to get a second opinion,” was like, “Those are your decisions. Let me know if there’s any way that I can help you or if you want to talk about this.” I said, “I’m not up for talking now.” I called my grandmother nana. I said, “I’m going to take nana home.” I take my grandmother home and I see my grandfather. He’s like, “How’d it go?” At that point is where I lost it. That’s where I start crying at a loss.

What was it about him asking?

I think because I wasn’t close with my dad per se. It was having a male figure. I can’t even explain what that was. I also don’t know if by the time Dr. Levy told me what options were to finally have it sink in and process. Maybe that’s what it was. I also knew that I would have to go home and talk to my then-boyfriend about what my options were. Internally, I was struggling because what separates women from men is the ability to carry children. I always thought that I would have children.

How important was having children to you?

I don’t know if I ever thought about its importance because when you’re younger, it’s always something that you’re going to do like, “I’m going to go to college. When I’m done with college, I’ll get married, then I’ll have kids.” I thought that was something when presented that I would check off my list but in terms of having this overwhelming need, like this baby fever which I know is real to people, both men and women, that never happened with me. I had fleeting moments of baby fever but then as quickly as they came, they would leave. I’m like, “I’ll get to it. I’m 26 years old. I have time.” I didn’t have time and that was hard.

What was hard about it?

Whatever decision I made was going to greatly impact my life. I had a conversation with my boyfriend and I said, “These are my options. I want to give you the ability to leave.” I know that the desire to procreate isn’t just a female thing. I know we often associate it with females who want to want to be mommies and stuff like that but men want to be daddies too. I wanted to make sure that I told him that if I pursued the option of a partial hysterectomy, there would be no way for me to carry his child. That gave him the green light or a free pass if he wanted to leave. He told me I was dumb.

We often associate procreation with females, but men want to be daddies too. Share on X

I was very lucky to have that support but there were also outside influences. My mother was going to be upset that I wouldn’t be able to have kids because I was leaning towards a partial hysterectomy. It’s the thought of Lupron, that this may or may not work then if I did get pregnant, I’d have to be in bed for nine months and be at risk for pregnancy. It would be a terrifying experience. I don’t think that I would’ve been able to appreciate when people are like, “I loved being pregnant. I loved watching my belly get big.” I’d be terrified the entire time, “Is this the day it’s going to rupture?”

My mom was disappointed that she wouldn’t have grandkids but I understand that that’s not me. That was always a hope that she had had for me, which was a hope that I had had for myself as well. My father being military was like, “I don’t understand why you’re crying about it. There’s nothing you can do to change it. Walk it off.” He was not the person to turn to. Oddly enough, because of my daddy issues, the fact that he doesn’t talk to any of my siblings except me, I’m the only 1 of the 4 that talked to him, I felt like I was letting him down. Two of my sisters have children. They don’t talk to my dad. I was like, “My kids would’ve been the only grandkids of his.” I was beating myself up that I wasn’t going to be able to provide that for him.

At this point, were there any grandchildren in the family?

Yes. There’s Violet, my oldest niece. I was talking to my sister Jessica, who was trying hard for her second child. I know it wasn’t coming as quickly as she wanted it to be. When I was discussing my options, she was like, “I would do anything to have another kid,” meaning to choose the Lupron. I’m like, “Am I choosing the wrong decision?” It’s not based on her but I was getting outside influences to sway me in different ways. In the end, I decided to move forward with the partial hysterectomy.

I’ll never forget the reason for that. I was at the office and I am working and then all of a sudden I’m starting to experience severe cramping. At this point, I carried a heating pad with me all the time. I had a full bottle of ibuprofen with me because those were my go-to. What sucked about the ibuprofen? I’m going to say I was taking the max every day. Over time, ibuprofen is not good for your liver and you’re not supposed to be taking it regularly but I had to. There was no other option for me. There was a certain threshold that I knew if I start to feel a twinge of pain if I took ibuprofen before, it hit this certain threshold, I could manage it. Once it reached a certain threshold, I have to brace myself.

I missed this threshold. My heating pad was not working for me. The door to my office was open but I was in so much pain. I was on the verge of tears. I could not stand. I crawled from my desk to the door, closed the office door and lay in the fetal position for close to one hour because I could not move. It was debilitating. At that point, I was like, “I can’t do this anymore. The life I’m living is not worth it. I need to do something. It’s crippling me.” That’s when I decided to go ahead with the surgery.

You mentioned getting the outside of feedback and having your sister say, “I do anything for this other shot.” How did you feel once you made that decision about your womanhood?

I cried because I almost felt less than a woman. If I can’t carry kids, not that that’s what makes a woman a woman but I kept thinking to myself of all the things I would miss out on like watching my stomach getting big or feeling a baby kick inside of me. Especially having seen my friends or my sister go through that, I wanted to experience that but knowing that I wouldn’t be able to, it’s almost like you’re mourning the loss of all of those things you’re never going to experience.

You’re mourning the loss of your womanhood, not that my uterus made me a woman but it’s a weird thing to explain to people that haven’t gone through something similar. You’re losing a part of yourself. You’re angry, hurt and confused. It’s all these emotions running through your body and mind at the same time. In the end, I knew that was the best decision for me because the life I was living was crippled or I was crippling. I was so dependent upon medicine and heating pads. It wasn’t worth it to me.

I imagine that was a hard thing to come to terms with. Have you?

For the most part. I do have times when I wonder what my life would’ve been like had I found this out earlier, especially since my relationship with my husband through years of couple and individual counseling, if we were what we are now back then, I probably would’ve chosen the Lupron but we weren’t. I wouldn’t want to bring a child into this world just because that clock is ticking. Once I made the decision, I felt good. Many things were going on but I felt good about my decision. I don’t regret my decision, even now I don’t regret it.

It was the right decision for you. I got to imagine because you are still in your reproductive years that people make assumptions about what you’ve done or haven’t done and why. Can you talk about that?

I hate and I’m speaking for myself when people look at my husband and me and say, “When are you two having kids?”

You got married after your surgery.

People say things blindly. There’s one that sticks out to me the most. It was before I had my surgery. I was going to the hospital because before you get admitted to the hospital, you have to submit all kinds of forms. Since I was getting put under, I needed to provide a will and power of attorney, heaven forbid something happened while I’m in surgery. I go in and I’m submitting all these forms to the intake lady. She’s like, “You’re coming in for a partial hysterectomy.” She’s filling out the paperwork. She’s like, “You’re awfully young.” I’m like, “Yes, I just turned 27.” This is right around my birthday. She keeps writing stuff down. She handed me my parking slip.

“You and your husband have too many kids and this is a way for you to not get pregnant again?” “No.” She keeps asking me probing questions and at the end, I said, “I have a uterine fibroid and they want to take it out because it may or may not be cancerous. It’s better that it comes out.” She’s like, “I’m sorry,” then she’s handing me the rest of my stuff and telling me where to park for when I have surgery the next day. As I’m leaving, she’s like, “I’m sorry. You would’ve made beautiful children.” I remember putting on a smile. I go into the car and start bawling because she’s right. I would’ve made beautiful babies.

I knew that she meant it nicely but sometimes people don’t understand when they say things like, “When are you going to have kids? You would’ve made beautiful babies. I didn’t know love until I looked into the eyes of my child.” That kind of stuff to me is insensitive and maybe that’s my point of view because I’ve walked this journey. I truly don’t know what I’d want people necessarily to say to me. Don’t assume that because I’m married, have a good career and have a thriving podcast that kids are next on my list or that my life is any less fulfilled, meaningful or enriched because I don’t have kids.

Don't assume that just because someone is married and has a good career, their life is any less fulfilled, meaningful, or enriched because they don't have kids. Share on X

Are there certain women whom you look up to or who have helped you on the childless journey?

There’s you. I also have a friend Alyssa who also has endometriosis. I didn’t talk about this but when I had surgery and when I woke up, let me tell you how scary that was in and of itself. Dr. Levy was also performing the surgery. Fibroids are typically benign so there is a chance that they could be cancerous. He wanted to do this operation laparoscopically, which means they do small little incisions rather than large incisions.

They cut up this fibroid and pull it out. He said, “I’m going to try to perform your surgery laparoscopically. However, if I see that it is a cancerous tumor, I’m going to have to do a C-section cut and take it out whole.” The first thing I did when I came to you out of my grog was I lifted my blanket to see what incision I had because I had no clue. It ended up being the size of a football, this tumor. I gave birth to a tumor.

Did you end up with a C-section scar?

No. Luckily, he was able to get it all out through these small incisions. As difficult as that decision was to make, I was uncomfortable recovering from surgery. I was sore but I remember sitting next to Vince and was like, “Can you put away my heating pad? I don’t need it anymore.” To be able to have this new lease on life, I didn’t have any pain anymore.

Alyssa, whom I mentioned earlier, also had endometriosis because that’s when they found out when they did the surgery. You can’t diagnose endometriosis until you go in. That’s when they see this endometriosis tissue. It is the inner lining of a woman’s uterus. Instead of being inside the uterus, it’s outside and it can attach itself to anything. That’s what causes women a lot of pain. That’s what was causing me a lot of pain.

While they were in there, they were categorizing what they saw but a woman is never truly free of endometriosis ever. Every about ten years or so, you have to go in for maintenance if you want to. I haven’t had to go that route yet but I would. When I say that I don’t regret my decision, I look at my activity level and sex life. I look at all these things that were inhibited because of my PCOS, fibroid and endo. I would do it again in a heartbeat.

This is endometriosis awareness month. That’s part of the reason that your episode is coming out when it is. What would you like to let our readers know about this condition?

What surprised me most when I got diagnosed with it was 1 in 4 women have it and they don’t even know it. Unfortunately, you can’t diagnose it unless you do a laparoscopic surgery where they do exploratory surgery. Even then, they can characterize or cut out what they see but it never goes away. No one understands endometriosis. All they know is that you’re born with it. It’s not genetics.

It’s something that happens as your cells are dividing and you’re becoming a human. There are many women impacted by this. There needs to be more education about it and sympathy because I got disregarded many times. I have all the symptoms of endo but no one took me seriously. Maybe I would’ve found the fibroid earlier and I still have my uterus. Who knows? Push for yourself.

Advocate for yourself. Do a bit more of that. One last question that I wanted to ask was going back to the subject of kids. You do have children in your life.

I do. I have my nieces and nephew. Thank you for bringing that up. That is something that helped me get through, which is, “I might not be able to have kids but I can be the best aunt, sister, best friend, best partner and best daughter.” That’s what I started to focus on. Being a “mom” maybe not be my lot in life but I have many other “labels or titles” that represent all of me. I’m more than just one thing. Not having that one title doesn’t make me any less of a person or woman. Once I came to grips with that, that helped me ease into my decision.

You are enjoying your life. We started with periods. We’ll end with periods. You don’t have periods anymore.

Can I say how liberating that was? One thing that Alyssa and I did is had a party. Shortly after I had my partial hysterectomy as she did, we burned all of our pads and tampons. We lit them on fire like torches. We may have had 1 or 2 bottles of wine. I remember coming home and my husband’s like, “You smell like a drunk girl scout coming back from camp.” We had so much fun. It was liberating because for so long I was tied to feminine hygiene products and a heating pad. Ibuprofen was my go-to. I carried it around my purse. It was nice to be able to put the heating pad away and the ibuprofen back into the medicine cabinet. I didn’t need it anymore.

What a great visual and ritual to close that chapter of your life.

I feel bad. When friends, girlfriends or my sisters come over to the house, they’re like, “I didn’t realize it’s that time of the month for me. Do you have anything?” I’m like, “No.” It was weird shortly after my surgery to walk past that aisle and women, you know what aisle I’m talking about.

Men too. How many times, “Can you go buy this for me?”

To not have to go down that aisle anymore is nice.

You are a fantastic aunt from what I’ve seen. You are very good to your friends who do have children. You’re going to make your own path, which is what you’ve been doing.

Thank you.

The time has come. Reflecting back, what would you tell your younger self?

You are not wrong. Keep advocating for yourself. That is probably one of my biggest, I wouldn’t say regret but, “Use your voice. You know something is wrong with your body. You’ve known it for years.” I got blinded by the fact that they were doctors and experts and who am I to question it? You know your body better than anyone else. If you feel something is off, keep pushing for it. You’re worth it.

PMH 32 | Endo
Endo: Keep advocating for yourself.

 

Looking forward, what one wish do you have for yourself on your current journey?

Keep living life to the fullest. I remember how paralyzing this disease was and how much it impacted every facet of my life from physical to sexual activity, to anything. I hated my body at that point because it wasn’t working as it should. Love yourself and your body. Live life to the fullest. As soon as I had that surgery, it was a new lease on life. I was able to do things and experience things I hadn’t before. To continue to love my body for all of its flaws, all the good and the bad.

 

Important Links

 

Love the show? Follow, rate & review us wherever you listen to your podcast!

Join the Pivotal Moments HQ community today

Leave a Reply

Your email address will not be published. Required fields are marked *