Going Through Total Surgical Menopause at 29 (Part 1) | Pelvis Party

Welcome back to the Pelvis Party! Today, we are so glad to have Heather Thompson, a patient at Olmsted Medical Center, tell her story about going through total surgical menopause at age 29– what led up to the decision, symptoms and personal struggles. Thank you so much, Heather for being vulnerable and sharing your story with us! 

Thank you also to Melissa Richards, MD, our favorite OBGYN, for sharing your expertise and opinions. Know that if you are going through something similar that you are not alone! 

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Transcript

SPEAKER_00 0:00

The the emotions, the uh everything. I felt like the best way that I can describe it almost is just like an out-of-body experience. Absolutely. It was awful.

SPEAKER_02 0:18

We are back on the pelvis party, and this time we have a special guest with us, Heather Thompson and Dr. Melissa Richards, OBGYN. On the Pelvis Party, it is our mission to bring you more real life experiences, and that's why Heather is joining us today. Heather, tell us a little bit about yourself, your family, what you do for work, where you live.

SPEAKER_00 0:39

I'm live here in Rochester. I am married to Matt Thompson. I um my experience with all this is why I'm here. I um went through menopause at 29, a surgical total menopause at 29. Um, I had endometeurosis, and it was the reason that we stumbled upon that is I was having trouble getting conceiving. And so after five years of doing all kinds of infertility and losing some pregnancies, um my goal was to make it till 30 and didn't quite get there. Um but prior to that, I just it was we wanted a second opinion, came to mail, and the surgeon was like, We'll put you in the OR Friday. And it was just like a whirlwind. And we had less than a week, and there I was. And going into that and with no I I didn't know what to expect. I had no idea what I was about to enter into. And at the time, my ex-husband and I had adopted our son from Guatemala, so he was um about a year old and we had put in for our daughter. So we had just gotten her referral actually when I was in the hospital. But um yeah, I had no idea what the next year was gonna entail. And it was just that's why I wanted to come on and talk, just to kind of enlighten people that you know, if I could help anyone through that journey, uh because I felt so alone and just didn't know. Um, I and I was fully taken off of any sort of estrogen for six months. And so I mean, just the the emotions, the everything, I felt like the best way that I could describe it almost is just like an out-of-body experience. Absolutely. It was awful.

SPEAKER_01 2:48

You know, it's interesting, uh, if you don't mind me busting into the conversation. Um, you know, medicine has changed and you are I'm a very young person, but there's even since you know, you had your hysterectomy, your hysterectomy, I assume, when they were every and removed your ovaries, so did a ooh-oophorectomy. So all the hormones are in your ovaries. So when we do the ooforectomy, that's what puts us into surgical menopause. Our uterus doesn't have any hormone in it. Um, but the management, you know, those six months, I get it, you had endometriosis. We think estrogen feeds those endometriosis cells. So taking that estrogen away from you completely, the idea is to kind of, for lack of a better term, kind of burn out any endo that's sitting in there. Things have changed a little bit. We still sometimes do that, but there's like ad back therapy we can do. It's also risks versus benefits, whether we want to do those things. Um, I also think education has changed. Like this conversation we're having right now probably wasn't part of the conversation when you had your eyes directly to me. Um, and it's so important to feel because you almost you don't know what to ask, right? To you're like, I know that I am in pain. I have physical and emotional trauma from the last five years, and I I'm at a place where I'm ready for that next step. But what's after that next step is so important to be able to understand it. Um after uh after you were done with those six months, did they do any type of um did you do some medicine or anything after that?

SPEAKER_00 4:23

Um yeah, we slowly went forward. Um, they put me on an estrogen patch, of which I was allergic to. Oh. And so we moved on with the estrogen pills, but it was so gradual. And it was such an up and down roller coaster that it literally till I was leveled out, it was two years. It took two years to get that stabilized, you know, and um trying to to get that leveled out and be a new mom and bring a new baby in. And it was it just it was just crazy, crazy time in life. Um I yeah, I I just I I I wish and at the time, you know, I would like I said, I was 29 trying to be a new mom and um and I just felt like there was no all my friend, you know, none of my friends were going through any of this, which was great. I didn't want anyone to have to do it, but I just didn't feel like there was any resources out there either for me to uh and if there were, no one was sharing that with me, or it wasn't something I could get on and Google. And even to this day, I just turned 50 and there's um health situations that have come up with me, my bone health, um all you know, just different things. And and I'll go on and I'll Google this, you know, like you know, someone early, you know, total hysterectomy, um you know, bone health. I don't know if I'm putting the right things in the search, but I mean it's literally, I really don't get much back. So um it's really hard. It is.

SPEAKER_02 6:13

So let's go back to the beginning a little bit. Our listeners to understand the journey because it's been a long journey for the time. It's been a very long journey. So at around 29 or before that, what symptoms, what was your first sign that something wasn't right?

SPEAKER_00 6:27

Okay. Um, actually, at the time that I started getting my periods, um I had ovarian cysts. So things didn't just get off to a very good start with me in general. And they were my periods were really uncomfortable, um, really bad cramps, terrible things, you know, and some of that I, you know, is some of it's normal too, but to the point of I would be stuck in bed. And um, but what really kind of uh struck us to go in and see a specialist is when I wasn't getting pregnant and it just wasn't happening, happening. So then we sought out a specialist, and I don't know if this is normal practice, but then again, you have to remember this is a long time ago. Um, but he took me right in for um laparoscopic surgery just to get a look in there, and he was like, Well, we've got something going on in here. So in the beginning, I was going through laparoscopic surgery. Um it was it started out, you know, I'd have it here, then it would be eight months, then it then it was being it was getting down to like a lot. And um and so it it it it was kind of inevitable that it it just we couldn't keep going and and and doing it so much. So multiple laparoscopies. Multiple, right.

SPEAKER_02 8:01

That's just from your perspective, Dr. Richards. Is that just to take a look around or what is that?

SPEAKER_01 8:06

Yeah, um so I will and many there's oftentimes this delay that happens with endometriosis, the diagnosis. Usually your first laparoscopy is, you know, can be 10 to even 15 years after your initial symptoms, which is kind of what happened in some ways when you look back at it. Um so the the best way, or I should say the gold standard of diagnosing, diagnosing endometriosis is through surgery, through a laparoscopy. The interesting thing about endometriosis is I can look inside a belly, not for the reason of endometriosis, and see what's called like stage three or stage four endometriosis, and the patient has no symptoms. And then you can also have a patient who has stage one or stage two, and they're just little spots of endometriosis in the belly. You remove that endometriosis, and after surgery, you're like, best day ever, this is amazing. Um we're using MRI a lot more now to kind of uh if you see endometriosis via MRI, there's probably endometriosis in there. If you don't see it by MRI, that doesn't mean there isn't endometriosis. So MRI is being used a little bit more, which I love because there is surgery and there's that recovery that you had, right? Like after every laparoscopy, there is that recovery, that's trauma for your belly. And then regarding management, as they probably told you, the the rules are kind of the same now. We want to get pregnant within, ideally after laparoscopy, within six months of laparoscopy. Um, but yeah, it's it's it's a real struggle. Endometriosis is really difficult regarding like the patient who wants to get pregnant and having endometriosis. Um, I think I'd make an argument now. We're probably a bit more aggressive in way of, I don't want to say aggressive, I would say there's more data out there to support maybe you would have gone to something like IVF a lot sooner or something like that, right? Totally. But, you know, we're still gathering all this data. We just started doing IVF in the you know 80s essentially. Um so I there's some similarities with your story, well, how we're doing things now, as well as, you know, we've in a great way, uh, things are getting a bit better, I would argue, too. So that's great. That's good. We like we like positive um forward traction. Yeah.

SPEAKER_02 10:25

And Heather, your husband is a doctor, right? A different field. But what was he maybe expressing to you during this time?

SPEAKER_00 10:34

So at that time I was married to my kids' dad. So I wasn't with Matt at that time. Um and I think for him, it was just it it got to be. I I feel bad for him because like I said, we had a one-year-old, and then I go in for this surgery, and I didn't know if I was coming or going. And we had our daughter coming back, and he finally sat down and was like, I don't know if we can do this, Heather. I you know, if you can't like it was very wonderful, wonderful and very understanding, but at the same time, you know, I would be in bed sobbing and having like hot flashes, and um they I didn't, I literally was, you know, I'm be crying, I don't know why I'm crying. You know, I mean it was just craziness, and then Caden would just be running around, you know, mom, come on, you know, and I it's like I can't, and so I think for him it was a big eye-opener. And he was he was scared, he was scared. How are we gonna bring another child in this?

SPEAKER_02 11:47

Because mom's out of commission right now, so that's so emotional really quick for sure.

SPEAKER_00 11:55

Yeah, we never knew what Heather was gonna show up. So yeah, it was tough, yeah, really tough.

SPEAKER_02 12:02

Well, thank you for sharing the vulnerable moment.

SPEAKER_00 12:05

Oh, absolutely. Like I said, I if it can help anyone to get through uh their time of this, they're not alone, and they certainly none of this is, you know, if they feel this way, let me tell you, I've been there too.

SPEAKER_02 12:18

So it was sad that you were experiencing other symptoms, so hot flashes, night sweats, night sweats, uh terrible anxiety.

SPEAKER_00 12:27

Um yeah, I um and I I I don't want to like scare anyone or anything like that, but my surgery, I did bleed out. So I had a bad experience with that. So when I got home, you know, I had all this blood in my abdomen and then that broke open. And so my recovery was a little bit traumatic. Um, my hemoglobin went from 14 to 5, and I was it was I got septic in the hospital, and yeah, it was it, yeah, it was a very traumatic ordeal.

SPEAKER_01 13:05

Wow. This is where I'm always like, um, people are amazing when you think about that. Like that's um like it's a chapter in your story, but that's like pretty traumatizing physically, mentally, emotionally, family-wise, all of those things. And you know, as a surgeon myself, um, we always talk about risks, benefits, and alternatives of surgery. And sometimes when we're so like we're coming in with a big problem, and I'm trying to fix a big problem. And then when you feel like you're, you know, just piling onto that big problem post-operatively, in the back of my head, I have to know that she's gonna be okay, right? But we have to get through it, and it's just so it's the whole team, you, your family, the surgeon, the nursing staff, everybody is yes, that's not part of the plan. No, that was not part of the plan.

SPEAKER_00 13:58

No, not at all. But I I have an amazing family, so I mean, and without them, I I don't know what I would have done. Yeah.

SPEAKER_02 14:07

Did last methods in your family have endometriosis, or were there any indicators meeting up?

SPEAKER_00 14:13

My mom was pretty convinced she that her mother, yes, had it. But she had nine babies too. So isn't there something with like pregnancy? Once you can get to that point with that can kind of put it to dormancy.

SPEAKER_01 14:30

Um, yeah, well, when you think about what's happening with endometriosis, once again, you know, we're gonna gain data, but it's lagging for what we want. Um, but some people with endometriosis have no issues with getting pregnant. Hard to say if it's once you get pregnant you continue, you know, getting pregnant. We're still learning about it. You know, it's I've seen patients, like I said, with horrible endometriosis and five kids at home. And I've seen patients where we've really struggled with fertility and endometriosis is their only diagnosis. And I'm like, I mean, their fallopian tubes are open. It didn't look bad. I took out that little piece of endo. So it's it's a really frustrating um uh chronic disease to work your way through. And sometimes you feel like you're trading uh something you traded your endometriosis for being postmenopausal, right? And all of that journey that that went along with that too. Um, it's really hard having uterus and ovaries sometimes or having them removed. It is it is so difficult.

SPEAKER_02 15:35

Well, as we wrap up, what would you want our listeners to know? Um, as women experiencing menopause symptoms, what would you leave them with?

SPEAKER_00 15:44

Um, I think the important thing is uh is to just make sure that you get tapped into the right people. I was we telling you earlier, um, you know, that happened when I was 29, now I'm 50. And um at times, you know, my hormones have dipped up and down. And so and sometimes my doctors don't agree on should she be on estrogen, how much estrogen, things like that. Um and so in the meantime, too, my bone health has gotten bad. And so I absolutely refuse to go off of my estrogen. I've told them that, but recently I I've gotten hooked back up with the women's health, and I I think that is so important because they they specialize in this, this is their thing, and I'm not saying that um family medicine isn't wonderful, but I really think that it's so important, especially if you're younger like I am, that it's crucial that you stay plugged in with people that this is what they do because you're there's a lot of things that you go through, you know, with even sexually, um, your body changes, your body changes, your tissues change, your everything changes, the way sex is changes, um, all of that, those things that once again no one told me about. So, um, and that doesn't come up necessarily when you're with your primary doctor. So I just think if I could give anyone any advice, it's please just make sure you tap in to the right people and just get educated on what whatever's out there. I don't know. And if you find out, let me know.

SPEAKER_02 17:39

There's a lot of information out there. And this is just part one, and we're bringing Heather back for our next episode to talk about what life is like after menopause is directomy. And thank you for joining us on the pelvis party. Dr. Richards, thank you for your time and your expertise. Like and follow us on any podcast platform that you listen to, your podcast on, and we'll see you next time.