Things didn’t go as expected – Update from Leah

Leah provides an update to her health journey. When last we spoke, Leah was preparing for a hysterectomy surgery. However, when her surgeon had her on the operating table, he discovered that he couldn’t do the hysterectomy as expected. Instead, she’s spent the last month recovering from surgery #1 and preparing for surgery #2.

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Things didn't go as expected - Update from Leah
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In this episode we talk about

  • Women’s reproductive care
  • Endometriosis – Leah’s unrecognized symptoms
  • Weight stigma in health care
  • Robot-assisted surgery
  • Potential outcomes for Leah’s upcoming surgery

Resources

Classeswww.leahcarey.com/courses

With the additional surgery, Leah has had to postpone the upcoming classes in the Fall In Love With Your Sex Life series. To get updates when the classes are rescheduled, join the mailing list.

In the meantime, you can get access to the six classes from the series that have already happened.

GoFundMe  – www.leahcarey.com/GoFundMe

Being self-employed, taking additional time off for surgery means an even longer time that she’s not making income. If you get value from Leah’s work and want to make a contribution, you are welcome to donate to her GoFundMe.

Maya Strom, No Fucks Givenhttps://www.goodgirlstalk.com/posts/podcast/maya-strom/

This is the conversation featuring Maya Strom mentioned in this episode.

 

Full episode text

Please note – In order to get this up in time, I’ve had this transcript generated by AI rather than my usual transcriptionist. Expect errors.

LEAH: Hey, friends, it’s Leah, and it has been a long minute since I have been behind a microphone. There’s still been episodes in the feed, but as you know, those are replays that I decided to bring back so that I could take a break for the medical stuff that I’ve been going through do. And there have been a lot of updates, a lot has happened since I last spoke with you. So I just wanted to pop in and give you a quick update, let you know what’s been going on, how I’m doing, and also just sort of chat because I think a lot of what I’m experiencing will be instructive to other women. And I have no idea if you can hear the traffic outside the window. This is like no tech and no script and just like, okay, let’s do this. So to go back a few months, let’s see, it was probably five months ago, I think I started having some unexpected spotting and cramping, which honestly, because I’m of the age of perimenopause, could have so easily been dismissed by my doctors.

It’s fairly common, honestly, for reproductive questions, or I should say that differently for concerns and questions from women about things to do with their reproductive organs. For those concerns to be dismissed, it would not have been surprising if a doctor had said to me, oh, that’s no big deal. That’s totally normal for perimenopause. However, I have a primary care person who is she specializes in women’s health, and she’s extremely she pays really close attention. I love her so much, and if you want to hear from her, you can go back in the feed to the episode. I think it was called No Fucks Given with Maya Strom. And she knowing that in my family history, I have two generations of reproductive cancers, both my mom and my grandmother passed away from cancers of the reproductive organs. She said, okay, we’re not going to play around with this.

I’m sending you to get an ultrasound. And so within a week or two, I had gone to get the ultrasound. And I knew while I was getting it, the techs are supposed to keep a very straight face and not let on to what’s happening or anything. And all of that was true, but the ultrasound tech did say, okay, good, we’ve got some great pictures so they can really see what’s going on. And I was like, oh, okay, so there’s something going on. And it turned out there was a lot going on. The whole baby making complex was dealing with stuff that was not meant to be there. Cysts and fibroids and all sorts of things.

And so again, rather than fool around with it, my PCP made a referral to a gynecological surgeon. I think that’s the right term. I also have to tell you, I am so tired. The exhaustion, it will be explained momentarily, but I am absolutely exhausted. So hopefully this is all making sense. So, anyway, I went to see the surgeon, and I was nervous because she was referring me to a specific surgeon. But when I called to get the appointment, the scheduler said, oh, she’s out for, I don’t know, a month or two. And Maya had said, I really want you to get this looked at sooner rather than later.

And so I just got scheduled with the first person who had an appointment available, and it was a man. And I got to tell you, I was not thrilled by the idea of having a male surgery, because, again, there are so many stories of women’s reproductive needs being dismissed or downplayed, especially by men, by male providers. And my mother’s cancer was not dismissed or downplayed. However, she had a male surgeon, and he, in going over the results of her surgery with her, said, this is a cancer that we basically see in fat women, which was this was nine years ago. At the time, I did not understand what fat phobia in medicine looks like and what negligence there is in treating fat patients today. If a provider said something like that to me or to someone else, I would raise holy fucking hell. Because what is she supposed to do with that information? She has the cancer. It does not matter.

That was a way of shaming her, and she lived with that for the rest of her life. For the next two years, she would occasionally refer back to the fact that, well, this cancer is my fault because I am overweight, which just is blatantly untrue. So, anyway, like I said, I don’t have a script, so I’m all over the place. So I was very nervous about having a male surgeon, but I got to tell you, I was in love with him within the first five minutes. I mean, not actually in love, but just from moment one, I was like, this is the guy. I am so happy to have been just randomly placed with this guy because he is so careful, so conscientious. He answers every question. My first consult with him, he spent 45 minutes with me and the friend who went with me answering literally every one of our questions.

And there were a couple of times when he said, I don’t know, find out and get back to you, which to me is the marker of a really great provider, somebody who is willing to say, I don’t know, but I’ll find out and get back to you. So he looked at the scans and said, yes, there is some shit going on in here. And he also said, if you want a hysterectomy, you can have a hysterectomy, which, again, is not necessarily common. There are a lot of people in women’s reproductive care who will fight against the hysterectomy, especially for women younger than me. I mean, at perimenopause, knowing for sure that I don’t want kids, that was less of a battle for me. So a woman in her 30s who presented with the same symptoms I did, who was asking for a hysterectomy, might have a much harder time getting one, but let’s call him Dr. H.

Dr. H was very clear because my friend and I were both, like, hitting this very hard. Hysterectomy, hysterectomy. And finally he looked at us, and he was like, you don’t have to fight me for this. I believe that if you want a hysterectomy, you should get a hysterectomy. And there’s clearly everything here. We’ll put it through insurance, and insurance will cover it. So you don’t need to fight me to get the hysterectomy. So surgery day comes.

We go in at 530 in the morning because it’s a first surgery of the day. And I wake up, and my partner was sitting right next to the bed, and I turned to him and I said, how did it go? Did they get everything? And he looked at me and he said, babe, I’m sorry, but they didn’t do the surgery. But apparently my response to that was, oh, balls. Which my partner still thinks is hilarious. So it turns out that once they got inside, they discovered that I have extremely severe endometriosis. Dr. H said it is the worst case of endometriosis he has ever seen, and he is stunned that I have been upright and walking around for the last four decades. That was something that caught my attention.

The result of the endometriosis is that they were unable to do the hysterectomy because and I let me say, had my understanding of what endometriosis is was clearly very, let’s say, incomplete. That would be generous. I thought that endometriosis was that the uterine lining, there were sort of leaks somewhere, and the uterine lining came out into the abdominal cavity. And that because there was blood coating the various organs in the abdominal cavity that caused just excruciating incapacitating pain that was kind of nonstop. And I thought, well, I have really bad periods, but I don’t have the kind of incapacitating pain that I’ve heard other women who have endometriosis talk about. So here’s where my education really began. And I got to tell you, let me just preface this by saying I am still not at all sure that I understand this correctly. I’ve seen the pictures.

I’ve had conversations with a few people. I may not be explaining this even remotely correctly, but I’m going to give you my best understanding. As I understand it, the blood coming out, like the uterine lining coming out into the abdominal cavity is correct. But I think that most of the blood ends up being, I don’t know, metabolized or somehow being taken care of. Again, not a doctor, have no idea what I’m talking about. But most of the blood ends up sort of just being taken care of by the system, but it leaves behind these small sticky fibers, and I should say there are some pockets of blood. Like, I could see those on the pictures that they took and they could see those on the scans. But those are not actually the main problem.

It’s these sticky fibers because all of these fibers stick together and create what they call this very glue like substance. And that glue, over time, basically glues all of the organs together. So there is stuff inside my pelvis that is really not where it should be. For instance, they took pictures while they were inside that first time. So I’ve gotten to see some of what he’s talking about. There’s one picture where you can see my ovary and he should be able to just go in and cut the attachments and lift it out. Except that there’s I think he said it was one of my urethra. I think the tube that takes urine from the kidney to the bladder, I think that’s what it was that is just lying on top of my ovary.

It’s not supposed to be there. And it’s glued in place by these fibers. So basically all of this stuff, my bladder, my colon, my uterus, my ovaries I don’t know if there’s more stuff. I’m sure there’s more stuff in there. It’s all glued together. And I was aware that endometriosis is a really difficult diagnosis to get, but I didn’t understand why. The reason is that it doesn’t show up on scans. These gluey structures can’t be seen on the scan.

So the only way to get a definitive diagnosis is for them to actually go in doing surgery, like an exploratory surgery, which is what they ended up doing. They didn’t do the hysterectomy. I had an exploratory surgery where they went in and sort of checked out everything to figure out how bad it is. And it’s staged in the same way that cancer is, though it’s not cancerous, at least minus. Not cancerous and minus stage four, which is the worst, the highest grade, because, you know, I like to be an A plus student and this is what causes the pain that my shit is not where my shit is supposed to be. And so I started looking up the symptoms of endometriosis and I was floored because I have had pretty much every one of them at various points in my life, some of them consistently. And I had interpreted those symptoms as me being weak, me being just not as strong as other women. Really what it comes down to is I have had extremely bad period symptoms.

In addition to the cramps feeling like I’m going to pass out when I stand up, some of these have gotten better over time. When I was a teenager, I came close to passing out pretty much every time I stood up when I had my period. Now that’s less of an issue. Also, temperature dysregulation. I would be freezing cold, but I would be sweating through my clothes like my clothes would be ringing, wet, nausea, headaches, so many things. Those were my period symptoms. But my father would say to me, he would see me laying on the couch and in extreme discomfort and really just awfulness. And his response would be, you should go outside and take a walk.

That’ll make you feel better. Basically, his response was always just do something, get better. Every woman goes through this, so why are you making such a big deal about it? And so I came to think of myself as a uniquely pathetic person who couldn’t handle the things that every other woman handles and seems to handle with ease. And meanwhile, I am this sniveling, pathetic, morally wanting person who can’t seem to just do what needs to be done to get over it. So Dr. H says to me, I can’t believe you’ve been up and walking around this whole time. And it was one of the most validating things I’ve ever heard when I began to understand what he was saying, that I am not a weak, morally deficient person. I have something in my body that has been attacking me, attacking my inner organs since I was a teenager.

And potentially I’m beginning to get the idea that maybe this is something that starts even before we go through, before we start menstruating, that people who have endometriosis. It starts even younger, potentially when we’re babies. So this was not a failing on my part. This was my body attacking itself and me living through the consequences and thinking that I was just doing life wrong. So the consequence of all of this is that I have to have another surgery and it’s happening in a couple of days. And rather than one surgeon, there are going to be four. Again, I like to do things right, but what they have to do is basically go in with a robot. This is robotic medicine that if I understand this correctly, again, not at all sure that I do.

But it cuts the little strands, like piece by piece, cell by cell, it cuts the little strands apart so that the organs can all settle back into the places they’re supposed to be. In regular anatomy, there’s one surgeon who will come in and specifically do the bowel because that’s his specialty. And I guess there are some particular concerns with the bowel because if that gets punctured in any way, that could cause large problems. There is also question about whether and I mentioned that there are still some patches of blood cells and those can cause lesions on various organs. So if they discover that there are significant lesions on my colon, they’ll need to do some further work there. So that’s the bowel surgeon and then the oncologist. So this is a different surgeon from Dr. H.

He will be there assisting her, but she is specifically trained on the robot and on cutting apart endometriosis. So she will come in and do all of the cutting of the little fibers to get everything back into its correct place. Oh, and I missed the surgeon who’s going to come in and do something fancy to show neon flashing signs, to show them where the ureters are because those can’t be harmed in any way. And then they’ll finally be able to do the actual hysterectomy. Instead of it being a two to three hour surgery, they’re expecting this to be a four to five hour surgery. Dr. H has said that six months from now, I will look back at this and feel better than I’ve ever felt or better than I’ve felt in four decades, something like that. I hope that’s true.

I have been dealing with chronic exhaustion my whole life. And it’s possible that all of this stuff that’s going on inside me has contributed to that, that my body has been working overtime to function because things are not the way they’re supposed to be. The bowel surgeon told me that I have a fairly extreme kink and not the fun kind, an extreme kink in my bowel. Because of all of this, that has been significantly affecting my bowel experience. And so that’s hopefully going to be resolved. There are a bunch of other things like that. So it’s possible that I will have more energy, which would be incredible. Lifelong goal.

It’s also going to be a longer recovery than expected. So they had told me to plan for like four to eight weeks after the just plain old hysterectomy. Now I’ve had four weeks to recover from that non surgery. It was actually a surgery. Obviously they cut into me and moved stuff around. So it was definitely a surgery, but they didn’t do the hysterectomy. So it feels to me like a non surgery. But I am so exhausted all of the time still.

And now I’m going to have a second surgery that is much more intense and complicated. And if I understand correctly, the recovery from the second surgery is going to be more intense. It’s going to take longer. So I don’t really know what that means in terms of time and my ability to keep making a podcast or to be coaching clients. I just don’t know when my energy system is going to be back online enough to be doing that. Please don’t worry, the podcast is not going anywhere. I just am not sure how long it will take me to get back to producing new episodes. So that is kind of the situation as it now stands.

And I know because you all reach out to me, which I appreciate so deeply, I know that there are going to be those of you asking, how can you support me? And so I have really resisted wanting to do this. But now, knowing that my recovery is going to be a lot longer than I expected, I’m going to tell you that I do have a GoFundMe to help. So that I don’t have to worry about finances while I’m recovering. Please understand there is no guilt or shame involved if you say I can’t or I don’t want to, but if you are able to and if you want to, you can go to www.leahcarey.com/GoFundMe, and that will take you to the fundraising site. And I would be incredibly grateful for any contribution you can make at this point. Every dollar counts. I am self employed, so when I don’t work, I don’t make money. So, yeah, I’m going to stop talking about that now because it makes me really uncomfortable.

Probably not going to hear from me with an update for a while because I don’t expect to be feeling like sitting in front of a microphone for a while. There are episodes in the pipeline for another couple of months. In the meantime, I’m not currently taking coaching clients, but I will be back to that as soon as possible. My hope is that by the end of June, I can open my calendar again. The other outcome is that the classes that I have on the schedule through the summer are going to be delayed. I just can’t do that right now. I still definitely want to make them happen, it’s just a question of when. In the meantime, you can go to leahcarey.com/courses and access the replays of all of the classes I’ve done so far.

So there are six classes up there Tie Me, Spank Me, which is Kink 101. There’s how to Talk to your Partner about sex. There’s body image and sex. All of those replays are available at leahcarey.com/courses. Thank you to everyone who has reached out to me over the past couple of months. I deeply appreciate you and your support and I hope that I will be able to come back to you sometime soon and say it was a grand success. I have so much more energy and my bowel movements are better and everything wonderful and positive. I will accept if you are a good thoughts person, I will accept all your good thoughts.

If you’re a woo person, I will accept all your woo. If you are a prayer person, I will accept your prayers. Just looking for the best possible outcome that leaves me healthy, whole and with so much more energy than I have ever had. So that’s it. Thank you so much. I am deeply grateful to all of you for being here and hopefully I will talk to you soon. Here’s to your better sex life.

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Episode credits:

Host / Producer / Editor – Leah Carey (email)
Transcripts – Jan Acielo
Music
 – Nazar Rybak

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