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In this episode, I speak to three amazing women about their experiences of endometriosis and its impact on their fertility decisions. Amy now has a 16 month old son after 2 years of difficulties. Irene has previously tried to get pregnant and is currently enjoying her childfree life with her husband and two dogs. Sarah is currently going through IVF treatment but with a keen awareness of the physical and emotional impact of this option.
Endometriosis affects one in ten women. It has a wide range of symptoms and can be difficult to diagnose. These are some links mentioned in the episode if you affected by the chronic condition.
Episode Transcript:
Mgt O Connor
Welcome to the Are Kids For Me podcast. This podcast is for you if you have ever asked, or are currently asking yourself this question. It's a big question which can be hard to answer for lots of reasons and I am hoping to provide you with some information that can help. In each episode I will speak to people with personal and/or professional experience in this area. My own name is Margaret O'Connor, I'm a counselor and psychotherapist who offers specialist counseling on this topic. I conducted my Master's research on how women in Ireland make the decision to become mothers or not. And I really really love talking about this topic. I hope you find it useful.
In this episode, I am speaking to three amazing women about their experiences of endometriosis, a condition with a wide range of symptoms including negative impacts on fertility. We have Irene who's originally from Norway, but is living in Ireland since 2010. She has had endometriosis pain since the age of 10 and was only recently diagnosed in 2018. She had surgery recently in Romania and has been relatively pain free since then. She has previously tried to become pregnant but it's currently enjoying her childfree life with her husband and two dogs. We have Amy who is a dual Irish and US citizen living in Dublin, but originally from California. She's been married for 12 years and was diagnosed with endometriosis in 2017, which largely contributed to fertility issues that they were experiencing for over two years. She's now mother to her 16 month old son Cian. And Sarah is from Limerick. She wasn't sure if she wanted to have children when she was younger, but is now going through IVF treatment with a keen awareness of the physical and emotional impact of this option. I really want to thank all three guests for being so open and honest with their very personal stories. I also want to thank the Endometriosis Association of Ireland for putting me in contact with these amazing women. They are a completely voluntary group doing amazing work and I will include links to them in the episode information, please reach out to them for support if you need it.
Okay, so I'm absolutely delighted to be joined with you all this evening virtually, the wonders of technology once again. And I'm really looking forward to discussing this topic. So thanks again. And welcome to everybody, to Amy, Irene and Sarah to be here this evening. So I suppose just to get us all kind of on the same page, we said that we might just have a discussion about what endometriosis is. Irene would you be okay just to give us a kind of an overview of the condition please?
Irene
Yeah..endometriosis is a common chronic inflammatory condition where tissues similar to the tissue that normally grows inside the uterus grows outside of uterus. The most common places where endometriosis occurs are the ovaries, the Fallopian tubes, the bowel and the areas in front, on the back and to the side of the uterus. It can also be found on the bladder and bowel. In some cases, it is also found outside the pelvis such as in the lungs, skin, brain and diaphragm.
Mgt O Connor
Wow. Okay. Okay. And I suppose the word, well there was lots of words in there but the word I pick up on is chronic. So this was.. this is something that doesn't really go away or isn't completely cured. Is that correct?
Irene
Yes, that is correct. It's a disease that we have to live with for our whole lives and there are treatment options, but there's no cure.
Mgt O Connor
Yes. Okay. Okay. And what are some of the symptoms? I know there could be a lot of them but what would be the most common symptoms do you think?
Irene
I think it varies. Obviously the most common one is period pains. That's usually how women find out that they do have it. And other pain can include like leg pain, for example. You can get shooting pain down your legs, you can get pain during sex, pain during bowel movements, and yeah, pain during ovulation. There's a lot of a lot of different symptoms. And it's also very important to know that all women experience these symptoms differently.
Mgt O Connor
Yes, yeah, absolutely. And this was really the reason I wanted to speak to you know more than one person on this topic. Yeah. Would you add anything else to that Amy or Sarah kind of or even maybe how the condition affects yourselves?
Amy
Yeah, so I guess the main thing for me with regards to the condition is definitely the pain around my period and also around ovulation. So much so that like, I could be curled up in a ball, you know in tears with a hot water bottle and a heating pad and everything else and still have really strong pain in my abdomen, my pelvis, as Irene said, in my groin and upper thighs. And so that was kind of the red flag for me I guess. And the way that I was diagnosed was actually part of my I guess fertility and pregnancy journey. I had been on the pill, years and years and years and years. I still had pretty terrible periods but it made it kind of manageable. And then when I came off the pill, it's when the endo symptoms started really coming to the fore. And I went for scans, blood tests, and obviously saw a couple of doctors and then finally I was diagnosed by laparoscopic surgery, that I had endometriosis on my uterus and ovaries.
Mgt O Connor
Okay, okay. Is it hard to get diagnosed? Officially?
Amy
Yes, I would say I'm probably the exception to the rule. So maybe don't look at me for that because I was actually diagnosed quite quickly, within under a year. Which is very quickly, I believe, and the other ladies can correct me, it can take up to about seven years for women to get properly diagnosed. And there's a number of reasons, obviously the lack of knowledge, you know, in not only general society, but in the medical community on endometriosis is still, you know, something that it has to be dealt with. Then, you know, women going to their doctor for period pain, you know, some doctors could just brush it off and say, no, it's this and that and take an ibuprofen or paracetamol or whatever. And so a lot of women I know, have had issues with not being believed about symptoms. But I was actually very lucky that I was, I had a very good GP and gyne.
Mgt O Connor
Sarah, did it take you longer?
Sarah
It's kind of a mixed journey for me because I suppose like Amy, I was also on the contraceptive pill from a very young age because I suffered so poorly with my periods. I used to have to come home to bed and spend 48 hours in bed with a hot water bottle. And this was as a child, essentially, Endometriosis is not a word I heard until I was 34. So it's not something that ever would have crossed my mind that I had a disease and this wasn't normal. But my mother obviously recognized that I was struggling. So she put me on the pill when I was 16. She brought me to the to the doctor. So that masked the disease for a very long time for me, and I mean, I always got bad period pain, but like Amy says, nothing that I couldn't really manage. So it wasn't until I think I was, gosh, I was in my 30's when I actually decided it's time to come off it, and that's when I really started to, to notice a lot of things. And at the time, actually, I was blaming the pill. I was like, I've been on the pill too long, the pill has done this to me, something's happened. I should never been on the pill as long. And it wasn't until I got diagnosed and even after I got diagnosed, I still thought the pill did it to me, that I started to remember my childhood and the severe pain I had that I started to kind of connect the dots and realize, you know what, I've actually had this all my life, and the pill was actually helping me and I didn't know. So yeah, I wouldn't, I still wouldn't go back on the pill. But, um, but yeah, it's definitely a very, very long journey. And I think it's something that um, I would say, basically, for me, I was having very painful periods and very heavy periods, but I was actually living in the UK at the time. And so I went to the doctor there and like you Amy, they just gave me very strong painkillers. I just thought, you know what, this isn't really good enough but I'll crack on, and but I started having like a persistent pain in my right side. And I just, I went, and I was going to the doctor a lot like we all do, and looking for answers. And I actually googled, I did Google, which I hate to say I did, and I just saw possibly like it's an ovarian cyst. And when I brought this to the doctor, the GP at the time he was like, oh, yeah, you know what, you could have a cyst you know, maybe maybe we could look into that further. And that's why I decided to go private, just because I thought I needed better health care. I know the NHS is amazing I would never ever fault it, but I just for me thought best go with the NHS and that's where I was offered surgery to look further into the cyst because I was having persistent pain like daily without any relief, and that's where they discovered I had endometriosis. So it came as a bit of a shock to me because I've never heard the word before.
Mgt O Connor
Wow, ok. And you both used the term there, which I can't pronounce.. laparoscopy. What is that?
Amy
That's basically keyhole abdominal surgery, to look around essentially. And and what my surgeons saw was lesions on my uterus and both ovaries. And at the time, I didn't, like Sarah, I really didn't know anything about endometriosis. I think I read about the word in a couple of magazines. I think I saw as well like that I wasn't like bleeding uncontrollably or heavily at during my period. So I didn't fit that kind of symptom but so I just went into it thinking oh, yeah, sure, hopefully, you know, they'll find what's causing my pain but not anything too serious. I remember the night before I went for my surgery. I was like, hysterical crying thinking I had cancer or something, you know. But yeah, so at the time, then my surgeon performed ablation on my lesions which is one tool that you can use to try and basically like singe the little or fry the little lesions but that's not known as the gold standard with endometriosis care and excision surgery, actually cutting it out is is the better gold standard approach. I didn't know that at the time and you know, I didn't I didn't know that I had endometriosis. So I didn't really look at the research ahead of time. I just kind of trusted my gynecologist.
Mgt O Connor
Of course. And both of them, so the ablation and the excision, they're to manage. Again, it's not a cure, but it's to try and manage the symptoms.
Amy
Correct. The idea is to try to get rid of the lesions that are you know, rogue, essentially in your body, wherever it may be, and to alleviate the symptoms, but you don't, there's no cure. People say hysterectomy is a cure. It's not. People who say pregnancy is a cure. It's not. I can tell you (laughter). Um, so yeah, it's it's more about just figuring out the kind of treatment option, pain management, symptom management.
Mgt O Connor
Okay.
Irene
I just wanted to add on to that, because if you can go to see an actual endometriosis excision specialist, somebody that is, you know, does this for a living, they do several excisions a week, you might be able to be pain free for the rest of your life. There has been people that have been pain free for for the rest of their lives. I've heard of several stories, people being pain free for seven plus years. But you need a specialist and with one hundred and 76 million women affected. And only 200 doctors worldwide that can actually do this. It's complicated.
Mgt O Connor
Yes, you has said that. So we're talking one in 10 women being affected by endometriosis and you're saying then 200 specialists worldwide. That is, that is scary. You you traveled for your surgery Irene, was that why?
Irene
Yes, I went to Bucharest, Romania to see Dr. Mitroi in February. And he did excision surgery on me after I've had two failed surgeries here in Ireland. And I could actually like it was amazing, actually when I came out of the anesthesia because I used to have this pain and it felt like a knife was stabbing me in my bladder. I used to wake up every hour of the night having to go to the toilet because I was in so much pain. And that was immediately gone after my surgery and I slept through the night for the first time in so many years,
Sarah
Like that is amazing.
Mgt O Connor
I mean that is amazing.
Amy
That's really awesome.
Mgt O Connor
It sounds like absolute torture before that. Like, I'm a major fan of sleeping through the night like, you know, having one night disturbed sleep is bad, but like how long was that was it like that for you?
Irene
Uh, it had been that severe for I think about two and a half years at that stage. But that that was just the sleeping problems. Before that I've had obviously I have been in pain since I was 10 years before I was even even got my period. And they used to call it growing pains. And but then when you realize that you're in your 20's and you're still getting growing pains (laughter), it might not be that. And so yeah, and I got my period but I think it was 12. And my mom had it, like the bad period pains. My sister had bad period pains. So for us it was just normal. Like you just were told to suck it up. Here's a hot water bottle, you might be put on the pill by the GP and that's just your life from now on. Um, but I think when I was around 17, I ended up in and out of hospital quite a lot because I had abdominal pain, and then got misdiagnosed with IBS because they thought that was the case. But it was actually endometriosis causing the issues. So I've been in and out of hospital since but we never, again like like, Sarah like Amy I, it's the same thing. I didn't know the word endometriosis until about three years ago. And it was my sister in law told me about it. And I had no idea it existed. I thought period pain was completely normal, and I was supposed to die every month. That was just supposed to be my life. And so yeah, I was delighted when I first found out I had a diagnosis. That was something was wrong with me. But then I spent the next years just studying and studying and studying on Nancy's Nook and through the Endometriosis Association of Ireland and basically promoting endometriosis in workplaces and doing more stuff like that.
Mgt O Connor
Yeah, I mean, there's so much in what you've just said, like, the normalization of, and I am going to say, women's pain and because it (everyone's nodding) you know, just yeah, you are expected to, to find a way to cope and live the rest with constant daily pain, not sleeping properly with severe monthly, you know, pain and discomfort for however long that lasts. I mean, it's just awful. Like it really is awful. And from such a young age like you're all talking from the age of 10. So having some form of constant pain, discomfort from that age is..
Irene
Yeah, and it's interesting in the fact because if you think about.. the the most like the biggest theory around endometriosis, it comes from Samson's theory, about retrograde menstruation, which means that we don't actually get pain until we do get our periods. But obviously several women have said that they've gotten pain before their periods. And then there's been studies done as well showing that. They did a study on dead feotuses where they found that one in ten dead fetus had endometriosis.
Mgt O Connor
Wow. Okay, so it's present from before
Amy
Yeah, and in women that have full hysterectomies, still can have pain and other symptoms. So yeah,
Mgt O Connor
And something that you know, I think is really important and ye brought to my awareness is how many myths there are about it, and we've we've touched on a few of them there. So there's been a lot of..a lack of information and a lot of misinformation, both generally and in the medical community. That's been your experience. Okay. So hysterectomy is not a cure. And this was because of what you said. So you're saying it's not it's not specifically a disease of the uterus. So taking that out won't affect it. Pregnancy as a cure. Sorry now but how is that suppose to work?
Amy
Well, yeah, I mean, I think for me personally, it did take away symptoms because I wasn't menstruating. But symptoms came back as soon as I delivered my darling boy 16 months ago. So pregnancy certainly is not a cure. If there are women that have you know, got relief after being pregnant and lasting relief, I'm thrilled for them, but it's definitely, you know, a myth to say, oh, just get pregnant. And actually, it's really hurtful to kind of say to a woman and it was said like to my face after I got the diagnosis, oh, just get pregnant. You know, it'll cure it and, like, they have no idea what I'm going through. And actually at the time, and I'll probably talk about it a little bit more later about trying to conceive and, like, you know, breaking my heart by saying that because I'm actually trying, and it's not happening. And I don't want to have to explain myself to those people. I shouldn't have to.
Mgt O Connor
Absolutely
Amy
yeah, so I definitely want to sort of squash that myth.
Mgt O Connor
Okay. Okay. Yeah.
Irene
I can actually add on to that one as well. My mother had five children (laughter). And, yeah, like a took away a lot of her period pain. And actually, that's got a lot quieter. Even after like after having kids and stuff, but she had a lot of other pain and she's never realized what it was until we found out I have endometriosis, that my sisters has endometriosis and now we're like oh, right, because she has the same symptoms as me as well. Like I would lose feeling, like I can't walk at times because my legs get so heavy that if I move them, I'm screaming and pain. And my mom has had that for years and doctors couldn't find out what it was. And then I started getting it and was diagnosed with endometriosis. So my mom still not diagnosed because she's over 60 at this time.
Mgt O Connor
Right okay, so clearly there's like a genetic element from what you were talking about, kind of family histories is common enough as well. And you were saying as well so that idea that you know the ablation and the excision are the same. So they're, they're they're not, or they're not as effective as each other. So that's another important myth to just clear up. Yeah.
Irene
Yeah, absolutely. I think that it was like Amy said earlier on. It's extremely important to know the difference, like if you think about an iceberg underwater and basically melt the top of it, you still have the iceberg at the bottom, that's ablation. Excision takes the whole thing out.
Mgt O Connor
That's a very good metaphor. I understand that! okay (laughter). Is there a reason that one is offered above the other like, practically or for any other reason?
Irene
Yeah, its expertise and also a lot to do with the myth of retrograde menstruation as well I think because if it's the.. that's the problem, they just need to maintain it until we get into menopause, or we get pregnant or you know, so they just, oh, it can we can do the surgery a couple of years, every couple of years, but the thing is, we can't do that. And so I think that has a lot to do with it as well. I'm not sure if it is cheaper, that I have no idea about but these specialists, they have years and years of practice like they've done fellowships under other surgeons, they've been trained. So yeah, it is extremely it's a huge difference and I'm not sure exactly why ablation is so such a huge thing.
Mgt O Connor
I suppose then as you've said with your mother also, menopause is not a cure either. It won't go away or won't necessarily correct it. Okay, so that's that's important information to get out there. And even just that idea that you would go and kind of like both of them sound, sorry, both of the procedures sound quite invasive, like the idea that you would just go and have that done every few years doesn't sound great either to me..
Amy
I've met lots of women through the Endometriosis Association of Ireland who have had multiple surgeries. We're talking five, seven surgeries in hopes of getting relief. I personally have only had one and that was painful enough and the recovery was long enough even though it is keyhole surgery, it's still surgery and you still have to recover from it. Um, but yeah, I mean my heart breaks hearing stories of women who go time and time again for surgery. That is, you know, not excision, excision surgery done by specialist in that field. And unfortunately, the expertise is just not there amongst the I guess wider gynecological community. There's only you know, as Irene I think, said there's only 200 specialists in the world. So, yeah. It's just not available to most women.
Sarah
Well, I got diagnosed in the UK, by a gynecologist there, he's by no means an expert in endo but he did use excision, and I had never heard of ablation before coming to Ireland. And so and it was actually by joining the endometriosis forums like on Facebook etc that I actually learned first of all a lot more about the disease from the women, and about ablation and and actually when I had my surgery here in Ireland, and then it was mainly ablation that was used because she said she wasn't able to get at it, to be able to do the excision surgery, that's what the expertise really is about. It's about being able to use the instruments to be able to get to the area, to be able to excise it. And I also want to mention about the hormonal treatments and I personally have never had the hormonal treatment. Well I have sorry, as part of IVF, but not not to treat endometriosis, and and I don't know how successful that has been for for women, you know, they tend to go on a drug that basically puts them into menopause for six months just to try and dampen everything down and stop you from getting your period and things like that. And but it's quite a lot on the body. You know, and and it can have a lot of other side effects which are very unwelcome. But whether it works to like, ease some of the pain, I can't comment because I've only had it as part of a fertility cycle.
Irene
Hey, are you referring to me Lupron?
Sarah
I am referring to.. decapeptyl.
Irene
Same but Lupron is a different type of hormone. They give it a lot in the US, which has permanent side effects and has.. they have documents hidden by a court order to not show it to the world. And so it's quite extensive the side effects. And I think this is one of the reasons they only use it, they should only be using it during treatments for IVF is because you only use for a short amount of time. But a lot of women have been on ** for a longer time and you know, there's a lot of side effects. Now all these have side effects, like the birth control pill has side effects. I've been on the birth control pill, I've been on the mini pill. I have been on the normal pill, mini pill, the Depo provera, the thing in the arm I don't remember what it's called now, I tried it. Yeah, I had it in the arm and I bled for six months straight. It was ridiculous. And the Depo provera I actually did really well on for such a long time, but I didn't realize the mood swings were due to that. And a lot of things you don't realize is caused by the pill or other birth controls that you've been putting into your body. Like the anxiety, depression, nervousness. The Depo provera even causes.. was what's it called again? It's bone density. So basically your bones weakening if you're only for too long, I was on it for 10 years.
Mgt O Connor
Wow, okay. Yeah.
Amy
It's it takes us back to the point that not like, all women are different, and all women respond to treatments differently. I, as I said, I was on the pill, the combi pill in like my 20's and early 30's. And since having my son, I'm on the mini pill at the minute and it does help me with my symptoms. So, but I know other women who have had absolutely nightmares on hormonal contraceptives.
Mgt O Connor
And it's hugely relevant. It's probably almost a topic of its own, but you know, how acceptable those side effects are, you know, again, you're just kind of meant to get on with them and cope. That's a whole other aspect to it. Yeah. Okay. And well, that's, that's really informative. Thank you very much. Could we maybe talk about the impact of the condition on fertility, so because this is quite an important aspect. So what are the possible impacts that endo can have on fertility for people?
Amy
So according to the Endometriosis Association of Ireland's website, 60 to 70% of women with endometriosis are still fertile. So that's an important figure to get out there, and do not have fertility issues. However, it does leave 30 to 40% who do have fertility issues. And I think infertility is defined as trying to conceive for 12 months with no success.
Mgt O Connor
Yes
Amy
So I personally was affected by that. I it took us about two years of trying to conceive my son, and that was after we'd given up essentially.. but..Yeah, where was I going to go with that? Sorry, I lost my train of thought. (laughter) And, but yeah, but oh, I was gonna say that we both had other tests done to try and find any reason why we were having difficulties. So he was tested, I was tested several times, bloods and whatever, and nothing came back. Everything was quote unquote normal apart from my endometriosis diagnosis. So that would lead you know myself and and my doctor to believe that that was affecting my fertility, that was the only thing apparently.
Mgt O Connor
Right, okay. And you know I did some research as part of my masters and I was trying to look at how women make decisions about whether to become parents or not. And there was kind of different processes involved in that. So for some people, it's very straightforward. They either know that they do or they don't want children. For other people it's really over and back and they change their mind quite a lot. And then there was this aspect of bit kind of being a forced decision. So like when something like this happens that can have an impact. You might have thought oh, yeah, I'll think about that in five or 10 years or whatever, but now you need to think about it now. Was there an aspect of that?
Sarah
I can, I can chip in with that. So I suppose I.. growing up never really saw myself having children, that wasn't something that, I probably was just being young and just thinking I want to focus on my career and enjoying my life and that's it. It wasn't until my nieces were born that I kind of felt oh no, do you know, this could actually be for me, I you know, I love them. I love being around them. And yeah, maybe having children is something I do want and it just becomes part of your everyday mentality that it's gonna happen someday. I want to meet the right guy. We'll settle down and it'll just happen you know, like magic. So, that was it. So that was basically my idea. I mean, I met my husband, I would consider a little bit later in life, in my 30's, which probably isn't that much later but it was for me, it was.. and we'd always assumed we were having children, and he's a good bit younger than me as well. And so I just I never really thought it was an issue like I said, i'd spent my whole life trying my best not to get pregnant. And so it wasn't until like my wedding, basically until I got the diagnosis. I was.. I'd been engaged six months and we were a year out for a wedding, when this word endometriosis appeared in my life and I had to do all this googling and try to understand what it meant for me. And I took it pretty hard because my family, like my mother was very fertile. My sister's are very fertile. And it was never something I ever had to consider. I always thought it would be a choice to have children. I never thought that I would not be able to have children. So it was a very tough discussion to have with my husband as to you know, do you still want to marry me because there's this possibility that this life, we planned is not gonna happen. And that was just after my surgery and when I went and met the doctor after, he put a huge amount of pressure on me to start getting pregnant ASAP. He was like, if I were you, I'd start trying today. I was like but I'm getting married, I'm saving for my wedding. You know, I'm not like ready, like, I am not ready. And he was like, well, I'd start trying now. And if you're not pregnant in six months, come back to me, and I'll see you then. So that was another conversation I had to have with my husband. Oh my god, do we start this now? Like, what happens if it happens tomorrow? Like what does that do with our life plan? And so yeah, it was al..l I felt I felt a lot of pressure from the doctor. But we as a couple decided to wait, and we waited until our wedding, basically from our wedding night. We've been trying for up to three years now...Still hopeful..
Mgt O Connor
Okay, and that pressure from your.. from your doctor. Was that like if you didn't start now..basically time time, was a factor..
Sarah
Yeah, age, age and endometriosis, and all these other complications. I had fibroids as well. So there's just a lot, and he was like just start now. Get on with it if it's what you want, but I hadn't really made the decision that it was something I wanted. And I felt this pressure from the stranger. And I was like, oh, maybe maybe we should be doing this. Maybe maybe I need to start doing this tonight. Like, I mean, not thinking at all, like, knowing that I physically even wasn't in the position, you know, to do it. So yeah, I did. I definitely felt a lot of pressure on that decision.
Mgt O Connor
Wow..and did you feel there was any support available to you like, that's a lot of information to get all at once, and be faced with these choices or decisions to make?
Sarah
No, I did as much reading, which I'm sure Irene and Amy have done, as I could. I bought book after book, online, a lot of evenings trying to read and I have to say that like, obviously I was in UK at the time, I moved to Ireland, two and a half years ago, and finding the Facebook groups, which I've already mentioned has been a huge help. A source of support, a source of information, everything. If ever I have an issue, I'm on that Facebook group and I'm asking questions And it's all the women just reaching out to each other. Without that I actually don't know where I'd be. Because my first laparoscopy, I had issues after it. I didn't know what was going on with my body. I didn't know what was happening. Obviously my second one I had, I had a better idea. But still I had some issues. And I reached out to the group, and they helped me and then when other women, I see them having questions, I'm able to like, oh, I did this, you know. There is no support, the aftercare after the operation..you're just given a sheet and sent on your way and you don't know what's going to happen to your body. For example, my period came super early. I had gotten my period and two weeks later, I got my period again, no information like that could happen. I just started bleeding and I didn't know why. So..
Amy
The same thing happened to me. I got my period, I would say four days post surgery, which, you know, recovering from surgery and then dealing with a very painful period. It's just yeah, and I had no idea to expect that so soon either.
Mgt O Connor
And these are all such personal, intimate, not obvious to other people..hopefully.. and you know, things to deal with. It's a lot, it's an awful lot to carry.
Sarah
And so I just want to add that like going through the IVF process is the same, it's very much like a physical thing. You don't have any support emotionally. So again, I'm part of the IVF Facebook group, and I really can't recommend it enough. And I know there's a lot of women who, are part of both groups because we see each other's names and, you know, touch base a lot with each other. But without that IVF Facebook group as well, I mean, I don't think I would have any, I mean, I wouldn't have any kind of emotional support outside my friends and family, which isn't necessarily fair, you know, so it's great to have people that are on the same journey with you.
Mgt O Connor
Did anybody else feel pressure or I suppose equally, support kind of from if it's doctors or medical professionals around the issue of pregnancy? How did that play out for people?
Amy
Yeah, similar to Sarah, I was told to start trying straightaway after surgery, apparently, you have a greater success with the lesions kind of minimized either through ablation or excision and so that's the theory anyways that you can get pregnant, like more easily after surgery than before, if you have, especially if you have other things like PCOS or fibroids or cysts or anything, so yeah, I but..I don't know for me, we were just ...I don't know, I needed a little bit of time because I, my experience with post-op was just not great. I think I it took me about a month to recover and like everything I read was like, oh, yeah, you'd be feeling fine after like a week and it wasn't. I got a also, I got a post-op infection, so that wasn't great. Um, So, yeah, we, you know, we did try a few months after that, and we kept going, but it didn't happen for us. So I don't know if really how true that is about like, you know, your chance is better immediately following surgery or not. But I definitely heard that from, you know, medical professionals.
Mgt O Connor
And this was a question and anecdotally, I've heard from some other people that there can be maybe a pressure or there is an assumption, you will want to have children and therefore will try everything to have children, even even with this condition. I don't know if I'm phrasing that correctly, because it's what I've heard from people. Would ye relate to that? Like there isn't maybe much discussion of women who won't have children, like, the assumption is that you will try
Amy
I mean, I'm happy..oh go ahead Sarah..
Sarah
(laughter) Okay, I was just going to mention that..um, so we've been on our journey for the last three years, we've now had two failed IVF cycles, the last one was just three weeks ago. And I'm in a lot and I mean a lot of pain. And, and I'm, I'm a bit like you Irene, I've been kind of struggling with sleep at night since that failed cycle. and I'm kind of at a point where I'm feeling like I'm done, that, you know, I want kids but I don't really want them that much that I willing to sacrifice myself, my health, to be able to have them. I'm very lucky that my husband is on the same page. He's seeing the pain I'm going through, he's seeing kind of the effects of it all. And he's been very supportive. But I do obviously feel pressure from like my family and friends to just go again, like I said, Oh, next round number three is my last and there was a bit of surprise.. why, why is that your last?I was like, because like I can't do anymore. And I do think then they start asking, well, what about adoption? What about egg donation? I'm just like, I don't necessarily want to have kids so much that I'm going to compromise. I might change my mind about that in a years time come back to me (laughter), but at the moment I feel like I have to draw a line for myself, my health and my mental health as well. So, you know, there's only so far you can push yourself for the want of children.
Mgt O Connor
Thank you. Thank you for your honesty. It does feel like there can be a stigma around that. I can't remember..there was a programme on TV a few years ago around a fertility clinic in Ireland, it was a it was a reality program, which I thought was really good and it was quite honest, about just how invasive physically and emotionally it is..the appointments and schedule and the impact that it has on your life. If you are going that way, like doing that once or twice seems like quite a lot. The assumption that you will do it 7,8,9,10 times, and I know people do and if that's their choice, that's fine. It's the assumption part, I suppose that I find..you have enough to deal with without dealing with that the idea that you're almost giving in or giving in..that can't be helpful on top of everything else. it's obviously not an easy decision, you know, you have talked and thought it through, endlessly I am going to assume, it's a lot to deal with.
Amy
You're very brave Sarah.
Sarah
It tends to take over your whole life, there comes a point, where it's all you're talking to friends, family, your husband. You just get like, I just want a break you know. Also, again, I'm trying not to be too un-PC, but obviously living in the UK, I lived there for eight years. The mentality there is completely different to here in Ireland. There, not getting married, living as a couple unmarried, not having kids, it's, it's pretty normal. Actually being married and having children, having the two point four kids ..I won't say is un-normal, but it's definitely not the most typical thing. I do feel since moving back to Ireland, that there is definitely more of a family focus. The pressure I would consider more here. I would love to hear Irene, and Amy's impression of that, if they feel that in Ireland that there is more pressure and expectation to have children, versus other countries that they've lived in.
Amy
Yeah, definitely. I grew up in California. And I came from a really big family. I had an idyllic childhood. and everything so it was just kind of expected of me to get married and have children. I actually bucked that trend initially. But when I did when I came to Ireland, I did see there was much more pressure here.To the extent that strangers in stores or salons would ask me so you're 32 and you're married, when are you going to pop out a few children, like it was just normal conversation to them and like how do yo answer that to a stranger. I mean, none of your business, sorry bye! No, I just kind of said, I just don't feel ready yet or I've chosen, you know I don't really want kids..and then that opens up a whole can of worms.. why not?! So I'm one of these people that obviously had a very unconventional route to motherhood because I was definitely like not going to have kids. Like every woman, we have the prerogative to change our minds. So I did and we did eventually, but I just can't tell you the amount of times that I was asked are you having kids, when are you having kids. You know you're not getting any younger.. that's a fun one to hear too.
Mgt O Connor
I feel the need to apologize on behalf of the Irish people to you. Because we definitely do this, it's inexplicable and I am sorry, like, I don't know why we think it's ok. (laughter)
Amy
Yeah (laughter) it's so personal! For me as well like when we were trying and we had that about two years where initially we weren't able,there's so much going on in your mind and in your body.You're dealing with so much already to then be told oh just have children, why aren't you having children. Sarah, has shared obviously with her friends and family that they are trying.I chose to keep that a secret from our friends and family, because I didn't want the expectations. I didn't want the constant questions so are you pregnant yet you know, that was really important to me to keep it personal and a secret,but then obviously people talked about it around you and had no idea what was going on behind the scenes.
Mgt O Connor
Yeak ok..do you mind me asking what changed your mind? How did you go from being quite happily childfree to changing your mind?
Amy
Yeah, Absolutely. That's why I'm here to share (laughter). So I just never felt really maternal, from an early age. I just was not the girl who wanted to grow up and to get married and be a mommy. That was just not me. I wanted my freedom, my independence, my education and to focus on my career. That eventually took me traveling around the world, Australia, New Zealand, England and then finally Ireland. I met my now husband, he is Irish and I stayed in Ireland. And I was always going to be the one that didn't get married of my friends, and of course I got married like really young. I got married when I was 25, which I think is very young . Yeah. So I changed my mind on that too. And then my husband and I, when we met, we actually bonded on our first date about not wanting kids and to own dogs, that was our thing. So we were like yes, this is perfect! You know we are happy to travel and have a free lifestyle and no obligations. Then I told myself when I hit 30, I need to make a decision because I kind of feel like in your 20's, you can kind of mess around a little bit. You have to become a proper adult when you hit 30 apparently. So I was like we'll make a decision whether we're going to try or not. Sure enough 30 came and I was like oh crap I'm still not ready! So I put it off, put it off, put it off. And then my husband was the one, he started asking me about it, he had it in his mind. He is six years older than me, but he doesn't have to carry the child so.., so he started asking me, and we talked about it. And I was like okay, we're in a better place now, we own our own house, we are more financially secure we have our two dogs. We're happy, but yeah, we have this place for potentially a child. I became open to the idea. So that's when I came off the birth control and we started trying. And obviously in that space, I was diagnosed with endometriosis and we had difficulties. And I know this sounds really weird but when I found out that I had endometriosis and I thought that the choice was taken away from me, I became like more adamant that I really wanted to get pregnant. I was like no, I'm in control of my body, I'm in control of the decisions. So I was like gung ho, about trying. But I have seen family and friends go through fertility treatments and Sarah, you're amazing for doing that. I had thought long and hard about it and I just was like, I can't bring myself to do that. I'm just not brave enough, for whatever reason, I just don't want to go through it and end up with disappointment. Even though you can successfully, you know you can successfully conceive through fertility treatment. I just personally couldn't make that commitment. So we had like given up kind of and my stress level decreased, we went on holiday, I relaxed. We came back, we relaxed some more and Boom, we got pregnant naturally. So I am a big believer in whats meant to be won't pass you by. I am a big believer in the effects of stress on a woman's body in particular. So I'm not saying it will happen for everyone. I know that it doesn't happen for everyone the way it happened for me, but I am living proof that it can happen.
Sarah
I love your story Amy that's an amazing story.
Amy
Thank you.
Mgt O Connor
It has everything! You've had a lot of positions there at various stages (laughter).
Amy
Yeah, definitely did not take the direct route (laughter)
Mgt O Connor
Well that would be very boring. Okay. And I know I suppose it's a hard question to ask the mother of a 16 month old but how is it was going for you? Are you getting any sleep?
Amy
Oh yeah..I was like so into my sleep before coming a mother and that's gone (laughter).I have to say he is actually relatively good, relative to other babies and toddlers, he is a good sleeper. But yeah, I'm in love, I love him to bits. Now looking back, I can't imagine my life without him. His name is Cian by the way. So yeah but I do really believe, and when you had approached about doing the podcast, I kind of looked back, and all those things, all those experiences and all that back and forth, and whatever brought me to the point where I was physically but more so mentally ready to become a mother and yeah, so it did work out for me. Yes, it's hard work. I'm not going to lie. I do miss the days of freedom of being able to you know decide to go somewhere last minute without packing a bag and arranging a babysitter. Yeah, i miss my sleep, really so much and there are aspects of my life that will never be the same. But you know that was a choice that my husband and I made. And we're so so happy now. My parents in fact are thrilled as he is their only grandchild too. So life has changed for the good. There are aspects of my old life that of course I miss. I would be lying if I didn't say that.
Mgt O Connor
I'm wondering like, you had a period of time where you thought it wasn't going to happen, and maybe for you Sarah, I know you're not sure and I'm not sure for you Irene.. Was it very difficult to picture what life might be like without having children. Because we see that path a lot I think, it's there in lots of different places. Do you feel, the opposite is visible or accessible when you are trying to figure out what it might look like?
Irene
For me, I think it's actually more difficult to imagine a life with children at this stage (laughter). Like we're, me and my husband, he's Irish.. I.We have two dogs, two amazing dogs.
Mgt O Connor
The Irish guys around don't they?! (laughter)
Irene
(laughter). I actually have two Swedish friends that are also married to Irish guys. So there you go. But yeah, we have two dogs. They're now both nine years old. I can't imagine my life without dogs. And I can't imagine my life before I had my oldest dog here. That's kind of the life I want. It's not that I said I don't want kids ,because I don't even know if I can have them at all. And we have gotten to the stage where we're like, whatever happens happens. And there is this worry that if I do get pregnant and if I have a girl, will she have endometriosis? Is she going to have to go through hell as well? Is it worth it? So there is that aspect of it as well. My husband always says but yeah you know who to deal with it now. I'm like yeah, but I still don't want anyone to go through that amount of pain. I don't, I don't know. But yeah I really enjoy my freedom so if we get pregnant, that is happy days but if we don't, I enjoy my freedom and I enjoy my life the way it is so.
Mgt O Connor
Ok, brilliant. And I hadn't even thought about that, I mean having to think about that decision or the possible impact if you were to have a girl, that's a whole other layer of things to think about. Wow.
Amy
My husband and I were married for 11 years before we had Cian, so we had a good life, we really enjoyed our life and we would honestly have been very very happy with our two dogs (laughter), our friends and family you know, but now, as I said earlier, looking back I can't imagine my life without my son. So its hard to think but at the time you know we loved our life, we were travelling a lot and I was pursuing my career, we had a lot more time to socialise and things like that.. so for us, I think it worked out for the best, we had that time to ourselves to be selfish, to focus on things that we wanted to pursue and now, I had him when I was 36 so now I'm kind of ready, as I said, I 'm mentally and emotionally ready to put my focus and energy into my son, not forgetting about self care or anything like that but its a different stage. And that's why I say as a woman, like never say never and i'm always entitled to change my mind.
Mgt O Connor
Absolutely. And I think you know you're capturing what Joanne said in the second episode, that she got to a point where she could see that there would be good and bad no matter what she did. You know, trying, as hard as it is, to take some pressure off the decision and that there will be joy and sorrow, good and bad, whether she had children or not, it would just be different.
Amy
I really related when I listened to that podcast, like super related. For me, the final kind of decision to come off the pill and start trying was will I regret it later, having not tried, having not been given the opportunity to see what happens. So that was kind of the thing for me. I didn't want to look back and regret at least not seeing what could happen.
Mgt O Connor
Thank you. Thank you to everyone for sharing, I know it's very personal stuff but I really really appreciate it. I suppose maybe just to finish off I suppose around the supports that are available. So you are all, is it, members of the Endometriosis Association of Ireland. So what kinds of supports do they provide?
Amy
Amazing support. They have a website, which has tons of information. There's also an online community. So if you're a member, you can become a part of the community and there are loads of women there to give their feedback and advice. So definitely, the EAI has been so helpful to me. I've attended the last two symposiums, the information days that they hosted. There was one last year and there was one two years prior to that. I attended both of them. They're incredible, not only for the information that you receive on the day, but also just meeting other women who are going through the same thing with you, with shared experiences. Knowing that you're not alone is so important because it can be kind of an isolating condition, because sometimes you know you're not able to work, sometimes you're not able to socialize. Sometimes you're not even able to get out of bed, so knowing that there are other women out there who are going through this and are supporting and are encouraging you, it is really amazing. I don't know about the information day this year, obviously COVID and all of that, it's going to be affected but as soon as it gets up and running, I will be there again.
Mgt O Connor
Yeah and I think a theme around I suppose people who are choosing maybe not to have children, is that it is really important to find like minded people. But absolutely for people with this condition, because I imagine there must be times where you think am I going mad, am I imagining things, am I being dramatic, you know or anything like that I imagine. It must be really important to meet other people, where you don't have to explain what you're talking about, because they understand that must be so important.
Amy
100%.
Mgt O Connor
So definite encouragement to go and check out the Endometriosis Association of Ireland. Are there any other supports that you'd recommend?
Irene
Yeah, there is on Facebook.There is a group called Nancy's Nook Endometriosis Education. So, it was created by Nancy Peterson, she is a retired nurse in the U.S. And she actually started with the first excision programme in the U.S. with Dr. David Redwine, I think it was back in the 80's or 90's, the 80's maybe.. She started this group as realized that there wasn't much support out there. So she and other admins of the group then help you know with education resources. It's not a support group, it's there for defining facts about endometriosis because if you google endometriosis, you will find a lot of myths and a lot of misinformation. So it's very dangerous to Google. Yeah, and they also, I think the majority of presidents of the endometriosis associations across the world are members too. And there are also a lot of specialists are part of that group too.
Mgt O Connor
Fantastic. That sounds really good. Sarah, is there anything you would recommend?
Sarah
I have just mentioned it a couple of times but just the Facebook groups I find...just talking to other women. No one knows your body like yourself. Talking to other woman, or women like you say who are going through what you're going through, whether that's the endometriosis side of things or the fertility journey side of things. It's very important to reach out and not feel isolated and have that support so those two Facebook groups I would definitely recommend.
Mgt O Connor
Brilliant Yeah, I'll get the links for all those and put them in at the end. Okay. Is there anything else you want to add, I know we have gone through a lot. But is there anything else you think is important for people to know or anything you want to add or clarify?
Amy
I would say just to women who are, you know, dealing with you know potentially endometriosis or painful periods to advocate for yourself. It's so important. Like I said earlier, I was lucky. I'm also very stubborn and independent because I'm American (laughter) so I wasn't the shrinking violet. You know, there are so many women who are told this is normal, just go away, sleep, take some medicine or whatever. You are your best advocate, 100%. And if your GP doesn't listen to you, then go to another one. And if your gyne doesn't listen to you, find another one. I don't know about..ok this might sound a little bit racist, but you know Irish people in general, just kind of say I'll do what I'm told (laughter). You know I'll listen to my GP that I've been going to for 15 years, and sure they're the expert. And I'm like, no, get a second opinion. It's not like you're betraying your GP to get a second opinion. You know your body yourself the best. You have to fight for your health, for your well being. It's just as much a mental, battle as it is a physical battle dealing with it.
Mgt O Connor
Yeah, no (laughter), I think you're entirely right. We can be very compliant and not want to upset anyone. So, absolutely. Keep going to get the best care, which I think is really really good advice. Thank you.
Irene
I will just add on and it's one thing that I think is extremely important is that period pains are not normal. If you're lieing, like collapsing and have to take time off school or time off work, it's not normal, go get it checked out.
Mgt O Connor
And it just sounds so obvious doesn't it. And yet, I think the absolute assumption is that your period is horrible and you will feel crap for at least a week and you just get on with it. I think at least that's what we were told (laughter). It's part of a whole other issue but yeah excellent advice, don't just accept that. Thank you. And Sarah, is there anything you want to add?
Sarah
I would just say don't let the diagnosis scare you. Like I know Amy mentioned earlier, that it doesn't mean your choices are taken away, there is help available out there like IVF for people who have endometriosis, even if they're suffering for fertility. If it's what you want, then fight for it. If you don't, that's okay too.
Mgt O Connor
Ok, brilliant. Thank you so much, absolutely fascinating and I know I've learned so much. Thank you so much for being so honest and so open for the interview, I really appreciate it. Thanks a million.
Sarah
Nice meeting you all.
Amy
You're welcome. We'll do it again maybe (laughter).
Mgt O Connor
Thanks very much to my guests for taking part and to you for listening. I'd love to hear your feedback and any suggestions for other topics you would like to see covered in this series. I would also love to build a community of like minded people. So please follow the 'Are Kids For Me' pages on Facebook and Instagram, if you want to find out more on this topic. I look forward to hearing from you. Watch out soon for the new episode.
Transcribed by https://otter.ai