SART Fertility Experts - Endometriosis

<div>Endometriosis is a condition that can affect many facets of a person&rsquo;s life, from pelvic pain to struggles with infertility. Listen as Christine discusses her experiences during her journey to motherhood with Dr. Joseph Findley, a reproductive endocrinologist and member of the Society for Reproductive Surgeons.</div>

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hello and welcome to this edition of the SART Fertility Experts podcast. My name is Joseph Findley and I'm a physician in reproductive endocrinology and infertility at University Hospitals Cleveland Medical Center in Cleveland, Ohio.

Today we're going to be talking with a patient about her experience with and treatment for endometriosis and how this condition affected her journey to motherhood. Endometriosis is roughly defined as endometrial tissue or the tissue that makes up the lining of the uterus being present outside of the uterus. When this condition is present, it can be associated with a variety of different symptoms ranging from pelvic pain to infertility.

Today I am joined by Christine, who is generous enough to share her story with us. Welcome. Thank you.

Okay, so would you be able to tell me a little bit about when and how you were diagnosed with endometriosis? Yeah, so I didn't actually experience any pain or have any idea that anything could be wrong until my early 30s and I'm in my mid-30s now. And so I was getting married in 2018 and so I stopped taking birth control maybe like six months before, maybe a little bit earlier than that. And I started having really painful periods.

I did not think too much of it because I feel like just growing up, I've always heard about people having periods that were painful. So I just thought that was like part of getting older, just didn't give it that much thought. But I did occasionally have to take off work, like I'd be in so much pain.

I remember one time I got in at like 7 a.m and by 7 30 a.m, like when people were talking to me or coming up, I was just thinking like, please leave the room. I'm in too much pain to like even listen to you, like just leave the room. Like I just need to be by myself and eventually like I had to go home because obviously you can't work with that mindset and would take ibuprofen and just kind of be curled up in bed.

Still didn't think much of it. Like I think I even had maybe my annual OBGYN appointment didn't really like, maybe I said like my periods were painful, maybe I didn't. I don't even remember thinking that it was necessarily a symptom because the way that it impacted me, it was really just like one day a month.

It was usually my first or second day. I'd have a really, really heavy period. And fast forward to the Thursday before I was getting married, it was my husband and I were having our last like dance rehearsal and I was in so much pain that I basically just sat on the dance floor and was like, I just need a break.

And my husband's like, well, do you want to stand up? And I'm like, oh no, I'm in too much pain to stand up. And he's like, this is not normal. I want to take you to urgent care.

And I'm like, oh no, this happens to me monthly, which like he knew I had taken off work, but he hadn't necessarily been there on the days that it happens. Like if it happened in the morning, he didn't like see me come back home. And he took me to urgent care and I happened to have a fever and it happened to be like I was experiencing on the side.

So they thought maybe it was appendix related. So they told me to go to the ER. So I go there, they do a bunch of different tests and the ER doctor says to me, well, it's not appendicitis.

That's the good news, but we want you to follow up with your OBGYN. We think, we suspect it might be endometriosis. It's not something we can diagnose.

So I had never heard of it before. Never like, and so I scheduled an appointment, like I got married that weekend, was fine, scheduled an appointment for the following week. And I went in and my OBGYN said, yeah, I like, I think they're right.

We can't really diagnose it for sure. Unless we actually like do a laparoscopy. I'm not sure if I said that right.

A laparoscopy. Yeah. And so he said, let's just to be like safe, come back in a month.

We'll see if it's grown, if the mass has grown, if it stayed the same, just to kind of see how this is progressing. And so I still like naively thought like, oh, maybe it's not that, or maybe it'll be fine. And so I come back after a month and he said, it's grown more.

We're going to have, you're going to have surgery on Tuesday. And I'm thinking, okay, which Tuesday? No, like this upcoming Tuesday, I want you to come in and have surgery. And so I did.

And so that's how I found out. And in terms of like fertility and our, like our family planning goals, my husband and I had been dating for eight years before we got married. So like when we got married was basically the time we wanted to start a family.

And so it's also aligned pretty much exactly with when I got diagnosed. So those two journeys happened at the same time. So they converged all at once.

Yes. So how did you feel when you heard about the possible diagnosis of endometriosis and you know, what was explained to you about this condition at that time? Yeah. So I was confused that just, I like, I didn't think that I had anything serious.

I didn't know I had never heard about it. And so I started doing some research and just trying to like, look into it the way that I understand it is it's like I, that I, and I explained that to other people. So hopefully this is correct or generally correct.

It's not completely understood or agreed upon why it occurs, but it's kind of like a retrograde period where not everything, when you menstruate, not everything exits your body and some of your flow stays inside. And that kind of like glues together things that shouldn't be like, it like heals and closes. And that's like, you have a difficult time getting pregnant and you have pain because things are connected that shouldn't be.

That's the way I've understood it. Yeah. And that's certainly one of the major working diagnoses or working etiologies for this condition.

We think that the menstruation does have retrograde flow back through the Philippian tubes where those implants of endometrial lining can sort of set up shop within the pelvis and in the abdomen because they're hormonally responsive. You know, they grow and attempt to shed when someone goes through their regular menstrual cycle. And unfortunately you're absolutely correct.

A lot of that inflammation and irritation that occurs can result in scar tissue formation. Now it sounds like you were in a situation where they had a stronger suspicion for what was going on right off the bat because they saw things on imaging. You know, not all patients, unfortunately, have that much of a clear cut diagnosis right off the bat.

So what types of treatments did you begin initially? Did you go straight to surgery or did you try anything else first? Yeah. So we actually did go straight to surgery. I have, I mean, I guess I'm lucky at my OB/GYN has like, has done that.

He was an elderly or older doctor and he just was like, saw it, recognized it and that's how he wanted to proceed. And I was comfortable with him and agreed with the diagnosis. I took my husband, my husband likes to ask a lot of questions.

I took him, you know, to the pre-surgery consultation and we talked about all the risks and move forward with it. It was my first surgery other than having my wisdom teeth removed. So it was definitely nerve wracking, but it seemed like that was our best shot and the best shot too for like moving forward with wanting to have kids was clearing it out.

And that certainly had to be a nerve wracking experience. You know, initially many patients are treated with hormonal therapies such as birth control pills, which it sounds like you had been on for a significant amount of time prior to having the initiation of symptoms. And it sounds like they supposedly worked relatively well as the symptoms did not onset until after you had discontinued that medicine.

What kind of timeframe was there between stopping the birth control pills and starting to have painful menses? I think it, I don't remember the exact timing, but I think it was probably like six to eight months. Okay. So there was a little bit of a lag time between discontinuation of the pills and starting to feel things.

Did you notice that once symptoms started, they kind of hit a peak and then plateaued or did they, were they continually increasing as time went on? They were, the pain was getting worse. I feel like I'm lucky in the sense that I really only experienced severe pain one day a month where it was like, I couldn't really function. Like I couldn't go to work.

I couldn't walk around. But for the most part, other than that, like my period, I just, I feel like I had like the level of cramping that I would have had when I was medicated on birth control. So I, it never extended, like it never led to like a longer period of pain or pain throughout my cycle.

It was just the one day, but that one day became more intense over time. And I actually, now I'm remembering too, I think it might've like alternated a little bit. And I think that was like, I suspect like it was one, whatever ovary was menstruating that, that month, like it might've been worse on one side than the other, but overall still the trend was that it was more intense as time went on.

Gotcha. Gotcha. And so you had the surgery shortly after diagnosis and how did you feel after that procedure? I, it actually, it went smoothly.

I basically just rewatched the Office and was on the couch for a week straight and tried to like limit how much I could walk. I have a large dog at home, so I wasn't really able to walk her. So she went to daycare and I just buckled down and rested until I recovered.

And about after a week I was able to go back to work. And what was it? Oh, sorry. I remember that I was surprised.

I think there's something like with surgery that was related to like pain when you have like a buildup of gas or something. And I was laying down when I should have been actually walking more. So I do remember calling early on and finding out that I should, like, I shouldn't be resting so much that I have that buildup because that was causing some sharp pain.

But other than that, it was a good recovery. Oh, excellent. And what was the plan moving on from that procedure? Were you going to undergo treatment for an additional period of time or were you going to wait X amount of time before attempting pregnancy? So my doctor advised to try to get pregnant naturally for six months.

And after that, if it didn't work, come back to him and, you know, we move on from there. And so that's basically what we did. And I think right around, so it was around the six month mark, I also started feeling pain again.

And we didn't do anything right away. So he put, I'm sorry, we didn't do anything in terms of the endometriosis right away. But he did put me on Clomid after that six month mark.

And I think I did three months of it. And I feel like my periods were getting really intense around that time again and very painful. And so he did do another ultrasound and found that it appeared that the endo was back.

And at that time, I decided to start doing like a bunch more research. And I found Nancy's Nook on Facebook. And she talks a lot.

She's a nurse that talks a lot about different resources for endometriosis and has like a recommended list of surgeons. And from that list, I found somebody and that was like a top surgeon in Cleveland. Luckily, you know, with our medical community here, you've got a lot of options.

And so I scheduled my second surgery with him. It was several, it was like a few months out so that it but it ended up being less than a year for my first surgery. So it was very rapid.

Oh, I also want to mention when my doctor, after my post at my post-op appointment, he, you know, prints out some of the imaging and was showing me like what it looks like when he was actually doing the surgery in terms of like the masses and he diagnosed it as stage four. And so he did say like, it's remarkable that I wasn't experiencing pain all the time, considering like how extensive it was. But like I said, the pain was very intense when it hit me, but it just wasn't like throughout the entire month.

And that's one of the things that's very interesting that you bring up about endometriosis. The severity and degree of disease does not necessarily correlate with the amount of symptoms that a patient experiences. Sometimes patients will have very extensive disease and have few symptoms while on the flip side, patients may have minimal disease and have symptoms that are somewhat debilitating.

You know, the stage is also important to consider when talking about endometriosis and proceeding with fertility treatment because each stage of endometriosis is thought to affect fertility to a different degree. And when there are stage three or stage four endometriosis present, proceeding to surgery initially as you did is thought to be the correct move. So, excellent.

So following that second procedure, how did you proceed and how did you feel? I felt about the same where I rested for a week and was able to have like a good recovery right after that. I did have some, like a bit of an allergic reaction that I didn't have the first time just to, it was at a different hospital group. And I think whatever like tape or glue they used gave me an allergic reaction.

So that, but that was my, so I was terribly itchy. But in terms of recovery, it was, you know, the, if I rested, I felt all right. And if I tried to do too much, that's when I was in pain.

So I rest as much as I could about a week and then felt better. And the second surgery provided a similar degree of relief from the endometriosis pain? Yeah. Yeah.

I didn't, after like the months following, I didn't feel pain during my period. And at that point I was diagnosed as stage three. Excellent.

So did you, about how long did you wait before attempting pregnancy again and proceeding with any form of fertility evaluation or treatment? I think we waited the first cycle after, like the first period I got, we didn't, we didn't try to get pregnant and it was right after that we did. But at the same time, I also scheduled an appointment as early as I could with the fertility clinic, which it's a couple of months wait anyway. So I just wanted to get in the books just in case.

And so I think I had surgery in July and then I was able to get my first appointment at the fertility clinic in September. Great. And when you went through the evaluation and treatment with the fertility clinic, what type of experience did you have and what types of things did you try? So the doctor I met with, and she also is an endometriosis like specialist.

She actually used to work with at the other clinic with the surgeon that I had. And so they knew each other very well and were able to like share notes. And she was able to see everything that he treated and felt confident that he removed the endometriosis.

And so for her, she decided she kind of like laid out what the different plans are. And since she had a lot of faith in his surgical abilities and knows that he practices like excision removal, that we could try IUIs to start with and then move on to IVF if needed. And so I was comfortable with that plan, especially like in terms of finances and in terms of I have like a fear of needles, so I didn't want to go straight to IVF.

So we did a few rounds of IUIs and then kind of each, I feel like each IUI, I, at some point I just had a gut feeling it wasn't going to work. And we did, we had planned to do three and then talk about IVF. And so, and that's like the schedule that we went on.

We did three and like every round of IUI that didn't work, I was just feeling like a little more depressed and just more frustrated and more concerned. I think that I would, it would just never happen. And like, there was a possibility that I just would never be able to get pregnant.

And at this point too, my husband had done like a sperm analysis to make sure there wasn't a problem. And on his side, I think his motility numbers were a little low, but he got those up with like some vitamins and lifestyle changes. And then he, his were, his side was fine.

And, but I was still just kind of worried that it was never going to happen and feeling, feeling that pressure. And of course, like family and friends are asking at this point, like, oh, when are you guys going to have kids? Do you want to have kids? Which just makes you feel worse. And when you're in the heat of it, you don't want to share all of your business, or at least I didn't feel comfortable with it.

I think after the fact I was able to share more with people, but in the moment, I would just sort of rather say like, you know, I hope we have kids. We'll see what happens. They'll ask a timeline.

I said, you know, when we're ready, but it does get frustrating to hear that question over and over again. And, you know, when family is telling you how much they want grandkids or great grandkids, and you're like, I want it just as much. But it's just difficult.

And so we got to our, our consultation. And it was, I think, just the timing of my cycle, we'd have to wait like another month. And then I was, we were going on a trip to Israel for my husband's cousin's wedding.

And so we decided to do a fourth round of IUI, just in case it works, just like because there was going to be a time gap anyway. And so we did, and it didn't work. And we went to Israel, we went to the wedding.

And then we came, I came back on a Wednesday, and the world shut down for COVID on that Friday. My husband actually was still there. And so he had to, like, rebook his flight to get home early, because they basically said they're closing the border soon.

And so if he wanted to fly out, that was he was going to have to do it like sooner rather than later. All the fertility clinics closed. And yeah, then we were we were just waiting.

And then it was really hard, because I didn't know one thing no one knew, you know, no one knew when things were going to open up again, and you didn't be able to have elective surgery. So just had to be very frustrating. Yeah, everything was just on pause.

And I was on like, you know, I was on Facebook groups and different like fertility boards and just reading other people's stories, and listening to podcasts and just trying to like, build out like a virtual community and support because I knew I wasn't alone and how I was feeling, but it does feel very lonely. Right? I'm just trying to feel like, get be patient during the process when you when it's just very uncertain.

And did you notice any progression and change in symptoms during that time when you had to wait with the COVID shutdown? I did not. So I didn't have any pain. Or I didn't suspect that that I know was back or anything at that time.

Excellent. Excellent. And so when were you able to finally get reinstated with treatment? So in May, I did, oh, I forgot what it's called like a saline test for my uterus just to make sure everything looked good.

Okay, before I got the the green light for IVF, and everything worked out. So then I started in early July, with all the medicine and shots to do a retrieval, my first retrieval. That was terrifying.

My husband and I are both not good with shots. He's worse than I am. So I ended up giving them myself.

And I made it work. And, yeah, and so the retrieval process, actually, for me was very challenging, because so you go in all the time. That part was nice in the sense of it being the pandemic, because I was working from home at that time.

And so it wasn't super obvious to my co workers that I was coming to work late, you know, with an appointment, you have appointments every, you know, two or three days down to every other day to check your blood and check your ultrasounds. And so it's kind of hard to keep that private, without co workers wondering, but when everything, when everything was virtual, it was kind of just easier to have that privacy, which I, which I really appreciate it. But my the process in general with the retrieval, just how my body was reacting to the medication, they were needing to tweak it a lot.

And I would go in and one day, they'd say, Oh, it looks good. We were, you know, we're seeing a lot of a lot of growth. And then the next day, they'd say, like, oh, it's kind of plateauing, we might need to cancel this cycle.

And so I was just a very up and down experience where it was like, oh, it's good. Oh, we might cancel. It looks good.

Oh, we might cancel. No, it looks good. Again, oh, we might cancel.

And my doctor gave me a call and was like, you know, I just want to find out what your plans are. If this is the only retrieval that you guys will do, then I'd recommend we cancel and we try it again, just because we're not, we're not like, I just I'm not sure about this one. And I think we have a lot better insight about how we would tweak things the next round.

Um, for me, I was terrified to have a period without them retrieving it just like with my history of already having a very heavy period thinking of myself being that stimulated and having, you know, my ovaries overproduce as much as possible for the retrieval. And knowing that we, you know, luckily, we're in a financial position where we would do two retrievals if needed to, I said, let's go forward. And so we did and it worked out.

So they were able to retrieve working eggs and that that came down to five embryos. Fantastic. Yeah, that's like, yeah.

And certainly as you go throughout the simulation process, it's kind of touch and go at times. And it's a matter of waiting to see how things go for that additional one or two days before having more answers and knowing what's going to be the next appropriate next step. So fantastic.

So you were able to create embryos and did you do a fresh transfer or a frozen embryo transfer? No, I think they they I forgot what what the term is for it. But basically, like I was a little little hyper stimulated. Is that the right term? Correct.

I was hyper stimulated. So they wanted to do to freeze them. So I ended up waiting a month to do a frozen transfer.

Fantastic. And how did things turn out with the frozen transfer? The needles got bigger. So that was terrifying with the progesterone needle.

That was very intimidating for me. But they did a frozen transfer. I think that the rate was like 60 or 70 percent chance that it would take.

And I kind of just like throughout this process, I it was hard to always stay positive. And I had never seen a positive pregnancy test like at all at this point. And so I literally just didn't even know if I could get pregnant.

So I was expecting it to not work. We and I didn't I didn't test ahead of time because I just didn't want to be disappointed. So I waited until we did our first test at the at the office and we got a call from the nurse that afternoon to tell us it worked and that we had a positive pregnancy test.

So it was extremely exciting. And I was very nervous that things would not progress as time went on, but it worked out. And I have a beautiful daughter, girl.

And though it may have been a spoiler a little bit earlier, sounds like the viewers had to hear a little bit about what she had to say throughout our earlier discussion. So, yes, that is true. So fantastic.

So, you know, given your experience and everything you've been through, you know, what types of advice would you give for the listeners at home? I think definitely like recognize when you're at your breaking point in terms of like a fertility journey in general, like I you can kind of it's hard to stay positive for a long time, like it's just not possible. And I don't know that that's like the best thing to do. So find what makes you survive and get through it.

And for me, that was listening to a bunch of different podcasts. Can I name them here? Is that OK to advertise? Absolutely. Yes.

I listened to Fertile Ground with Spencer Broussard, Infertile AF and Fab Fertility. And the last two are a lot of different people's different stories. And I didn't just listen to endometriosis stories, I think we have a lot of feelings in general, no matter what kind of your barrier is.

Spencer Broussard is another person I listened to and she had like the she she I think it took her four years and she was just unknown, like they could never never really diagnosed what the issue was. But I think that that it helped me to listen to other people's stories, even when their stories didn't have the ending I wanted it to. So even when there are people who ended up not deciding to not have kids or because it had been so many years that they were trying, I just knowing that people survived past that point made me feel like I can make it.

And then, you know, hearing positive stories when I needed to, that was also good. And just kind of like feeling figuring out what would get you through it. I did some I did a watercolor painting class online, I did a bunch of yoga, just whatever kind of got me through it, it was hard to stay positive.

And then I think for the endometriosis, I think, I don't know if it's a woman thing, but I feel like don't ignore when you have symptoms. I, I just took the pain as a normal thing, even though it was a change. And I think, just like letting women know that if something is changing in your body, it doesn't mean don't assume it's normal, you know, talk to somebody about it.

I don't know if I would have gotten diagnosed early or not, like I might not that might not have been the case. I, I didn't mention this earlier. But as I think about it, I had a couple of times where I had like, intercourse was feeling painful.

And I brought that up to my doctor. And that probably was a symptom. And like, he didn't respond to it as a symptom, he thought it kind of responded to have you tried this or have you tried this, but it probably was a symptom because I had the same partner for a long time.

And I didn't experience that, you know, throughout the years. So that was a change. And so I think probably just continuing to bring up when things are changing, and thinking of them as, as a symptom on your own and advocating and finding, you know, people that you're comfortable with, too, is, is essential.

Absolutely. And I think, you know, like you said, trusting your body is key. If something doesn't seem right, certainly seek out care to try and figure out what's going on.

And from the fertility aspects, you know, I think what you mentioned mirrors what a lot of patients feel. And it is important to look at what resources are available. We're hoping for a number two in the future.

So you may see us one day in person. Fantastic. Fantastic.

And it sounds like there are embryos available. So it'll be a, it'll be a much more abbreviated process. Hopefully.

I don't want to do another retrieval, but we will. We have to understand, understand. Christine, thank you very much for sharing your story with us.

And thank you to all the listeners for tuning in. This concludes this episode of the SART Fertility Expert Podcast. Until next time.

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