1 in 10 women have endometriosis. Painful periods, pain with sex, bloating, pelvic pain, infertility or no symptoms at all. Until they try to get pregnant.
Mostly our periods suck. But whether an inconvenience or a show stopper - can you tell me how your period compares to your friends?
What studies say is that most women can’t tell us their period is worse than everyone else’s. Taking a day off school or work because of your period might seem normal. Sucking down pain killers to get by might seem normal.
It is not.
1 in 10 women have endometriosis. Painful periods, pain with sex, bloating, pelvic pain, infertility or no symptoms at all.
It is such a common problem and yet we are still hopeless at diagnosing it, taking between 7-10 years for most women.
It is a major part of the work I do, to diagnose and treat and monitor and then when you are ready to get pregnant – look at whether your endo is impacting your fertility.
Having endo means you may have a different treatment plan to getting pregnant.
Part of that plan is getting motivated as to your next steps. [ Hint: your next step is to listen to this podcast.] The normal rules of ‘how long does it take to get pregnant’ do not apply.
In this podcast we talk about:
What is endometriosis
The diagnosis and treatment of endometriosis
Having a laparascopy for endo treatment
How having endo means you may have a different treatment plan to getting pregnant.
The steps you need to take after a laparascopy and coming off your contraception
And while we are here, some endo facts:
1 in 10 women have endometriosis
On average it takes 7-10 years for women to get diagnosed
You can have endo in your early teens
Some women don’t know they have endo until they try for a baby
In this podcast we also talk about @qendoau and @endogram
Brigid [00:00:36] Welcome, everyone. Well, this is episode 20 and we've titled this one Getting Pregnant when you have Endo. Now we talk about Endo a lot in our household, even though we do have four boys. It seems quite strange that we talk about a lot. Basically, Paddy, because it really impacts your work. You have a lot of people with Endo at work. Yeah.
Patrick [00:00:59] So within the gynecology part of my practice, a lot of it is young women with pelvic pain and a lot of those have endometriosis. And we've been thinking about a lot about, you know, how does this fit in with a pregnancy program? And I think it is really relevant because if you've got Endo, one of the things that you worry about is your future fertility. And today we can be talking about when you've had your endo treated and so forth, and now you come up to wanting a baby. How are things different?
Brigid [00:01:26] And you've got a bit of a special interest in endometriosis, don't you?
Patrick [00:01:30] Absolutely. So right now, I'm on a terrific committee at the College of Obstetricians and Gynecologists working on an endometriosis public awareness program and screening tool and a GP education program. Yeah. So the college have got some money, some some federal government funding to develop those things. And I'm working with some really terrific people across different disciplines as well. So not just the obstetrician gynecologist, but also anaethetists, pooling our energies to come up with a really great product.
Brigid [00:02:05] And those specialists are throughout Australia, aren't they?
Brigid [00:02:08] Yep. Yep, yep. So really. It'd be interesting for everybody to hear. I'm sure. Why are you doing that? What's the main sort of objective of that steering group?
Patrick [00:02:19] Look, I think what we're trying to do is narrow the time frame between people developing symptoms of endometriosis and getting diagnosed and properly treated.
Brigid [00:02:28] Yeah, because the diagnosis time is pretty horrific, isn't it?
Patrick [00:02:32] Yeah. There's a figure is sort of bandied around of seven years between someone on average, between a young woman developing symptoms that are fairly convincing for Endo and her actually getting a proper diagnosis and treatment. Miles, too long.
Brigid [00:02:47] Miles too long. And when you say young women, we're talking teenagers too. Yeah. So that's one of the things that we're working on for educational programs. You can't really be too young. Yeah. So if you've you know, if you're if you're 16, 17 is no reason why you can't have endo
Brigid [00:03:00] Yeah. What we haven't done yet is define what is endo?
Patrick [00:03:05] OK. So endometriosis is a condition that's very common. It might affect up to 10 per cent of women and it's where tissue that is very similar to the tissue that lines the uterus and makes your period every month that tissue crops up outside the uterus. Commonly in the pelvis attached to the peritoneum, which is the lining of the pelvis and sometimes attached to other things like the ovaries or the fallopian tubes or bowel or bladder. And when it's out there, it causes pain, inflammation, scarring, painful periods, pain with sex, and obviously is relevant to someone who wants to have a baby.
Brigid [00:03:45] And why is it relevant to somebody that wants to have a baby?
Patrick [00:03:48] Well, there's lots of reasons why your endo might affect your fertility. You might be in too much pain to have sex, you never get pregnant if you don’t have sex, give or take. You might have the endometriosis still present in the pelvis. And we know that endometriosis nodules secrete substances that inhibit fertilization and implantation. So fertilization and sperm meeting egg can implantation fertilized egg implanting in the uterine wall. So it's commonly seen in people seeking reproductive assistance. And then in women with severe endometriosis, there might be there might be relevant how well that pregnancy goes. So there's a whole sort of different set of considerations. If someone who's known to have endometriosis knows this is coming up to a time when they want to have a pregnancy.
Brigid [00:04:37] And do you think that, you know, women who have perhaps come up from their teen years with endometriosis and maybe they've taken seven years to be diagnosed with it, do you think that there's an awareness that endometriosis can have an impact on a woman's fertility?
Patrick [00:04:51] I think there's sort of an awareness based on education programs and so forth. But what we find is that there isn't a great awareness amongst that group about what should hurt and what and what shouldn't. So, you know, we often see teenagers who think that it's normal to have an agonizingly painful period.
Brigid [00:05:10] And days missed of school.
Patrick [00:05:11] Yeah. Yeah. So so we're sort of working on better education so that we can we can help those people, those women identify themselves. Yes. Okay. And they can come to their GP and say, you know, my period is way worse than everybody else's than my peers, I'm in pain. I've started having sex and it's super painful and so forth. And they can identify themselves as being likely to have a problem.
Brigid [00:05:35] Are they the only symptoms that might sort of raise a red flag for a woman?
Patrick [00:05:40] The big ones are painful period. Pelvic pain at other times of the month, pain with deep intercourse and then sometimes even with severe endometriosis, no symptoms at all right. And we only find that if they have a laparoscopy, say, for infertility, you know, as part of the investigation of why they've been trying for a year and have got pregnant and we find significant endometriosis.
Brigid [00:06:02] How weird that they don't have any symptoms, though, because it can be so debilitating for women. Yeah. I mean, that's right.
Patrick [00:06:08] There's a broad range of, you know, clinical manifestations. So we can have a woman with terrible pain. And we can fully expect that at laparoscopy, she will have bad endo. And we put the laparoscope in and she'll have one spot. You take that spot and she's fine. Yeah. There's another group who've never had a symptom in their life, have a laparoscopy because of infertility. And you find really quite bad endometriosis. But it wasn't troubling the woman at all.
Brigid [00:06:33] Wow. So when you're working with the steering committee, are you working on what is the way to get diagnosed? How do you get diagnosed?
Patrick [00:06:40] Well, there's a number of things we're trying to trying to develop. One is the tool that the patient could use themselves, an online tool to say, hey, I tick all of those boxes, I'm going to take my five ticked boxes to the GP and say, say, I probably should be sent to a gynaecologist. I think that's a useful thing. That's sort of patient education, helping them identify themselves. And then a separate tool which is about helping GPs is to navigate the complex diagnostic process that endometriosis can be.
Brigid [00:07:10] And is it only gynaecologists that can confirm the diagnosis?
Patrick [00:07:14] Yes. So, I mean, you can have ultrasounds and all sorts of things, but ultimately it's really only laparoscopy where we have an operation, where we put a telescope in through the bellybutton and have a look at your insides that can confirm the diagnosis.
Brigid [00:07:26] Can we just describe a laparoscopy again, like in more detail?
Patrick [00:07:31] So it's an operation where you come to the hospital to have a general anesthetic after sleep for a while and we make a cut in the bottom of your bellybutton. Put a telescope inside. Fill your belly with some gas so we can see what we're doing and use a bright light shone around on your insides to see what if there's endometriosis there. And if there is, treat it on the same occasion. And what is treatment? What does that mean? Well, if there's an endo we cut it out. So it is generally regarded that the technique to cut it out is better than the try burn it off.
Brigid [00:08:01] OK. So they've got terms, don't they? Because people know those terms.
Patrick [00:08:04] Excision and motivated patients know about that. So there's a thing called ablation where you just use diathermy to try and sort of burn the endometriosis in position. And the technique which is widely regarded as being superior is where you actually pick up each deposit and cut it off entirely. Yeah, right. So excision better than ablation.
Brigid [00:08:27] Okay. Because I don't know that a lot of people talk about having ablation for their endo, don't they.
Patrick [00:08:33] Yes. Well, we probably getting off topic a little bit, but I think that that's a probably, you know, broadly speaking and an outdated technique.
Brigid [00:08:41] Okay. All right. So the main treatment then is always laparoscopic surgery or are there other treatments that you can do?
Patrick [00:08:49] Well, I think a laparoscopy and surgical treatment is going to be part of everybody's treatment. But endometriosis is more complicated than just the surgical findings. And often a young woman with endometriosis needs a multidisciplinary treatment involving surgical gynaecology, but also pain relief, also physiotherapy, also pain management clinic, maybe even psychologist and diet. Yeah, there's some evidence that diet is relevant. Certainly it may well be relevant to the inflammatory part of it. So if you've got some endometriosis in your pelvis, the amount of inflammation that actually causes and the amount of pain it actually causes you, there's some evidence that diet might be relevant for that.
Brigid [00:09:35] So if I am trying to have a baby and I'm I've had my endo treated in the early 20s and I'm traveling, okay. You know, I'm having some good and some bad days as you do and good months and some bad months for whatever reason. Now, I'm about 28 because we like 28. Yeah. And I want to try for a baby. What do I need to do now?
Patrick [00:09:57] Well, I think this is the crux of it. I think this is so important is that if a woman is being treated for endometriosis in the past, then she's really not really any longer part of that sort of totally normal group of young women where we say to them, yeah, go off your contraception, starts folate, have regular mid cycle sex and come to the doctor if you get pregnant in a year. If someone's already been treated for endometriosis. Her advice will be different. And I think that the number one thing that we would want that woman to be doing would be to assess between herself and our local doctor how do we think the endo is really going. Yeah.
So right now and in particular when I come off my contraception. So she might have had a laparoscopy five years ago and after the laparoscopy, gone on a pill or mirena to suppress her period, and that might have been what what got her through the next five years of relative comfort. And then we say rightio. Well, you want a baby now come off your contraception, period's going to come back. So then we want to say, what's it like? So if the period comes back in, it's agonizingly painful or sex becomes agonizingly painful. Then don't wait a year. We're going to go back to local doc, back to original gynaecologist and work out what the endo is doing now. Yeah. Okay. Before we potentially waste a year.
Brigid [00:11:17] Is it likely that she'd need another surgery? Well, maybe.
Patrick [00:11:20] Yeah, certainly needs an assessment. Yeah. And then we might say, look, clearly this looks like a recurrence or that there's active disease here somewhere and that before you go and try for a year you might be in operation first. Yeah. Yeah. Or at the very least we might say we'll try for a while but not a year. Try for six months tops. And if your not pregnant, come back and we'll repeat the laparoscopy or do some more tests. Yeah.
Brigid [00:11:45] Is there a timeframe if they do have a laparoscopy? Is there a timeframe to wait until they start baby making after the laparoscopic,.
Patrick [00:11:52] No, just when you're comfortable again? Yeah, right.
Brigid [00:11:56] And for those women that perhaps find deep penetration painful during sex. And, you know, it's an essential ingredient in baby making sure we're not the deep penetration. Sex is. What would you suggest? You got any tips?
Patrick [00:12:09] Look, I think there are a couple of things about that. Number one is that is that if that pain is much worse than you've had in the past, then that has to be considered a possible symptom of a recurrence. And you might need to discuss that with your local doctor, gynecologist. And then if you've got pain with intercourse and you're having intercourse more often because try to get pregnant, then there are some tips that people can use like ltaking anti inflammatories before sex that can really help to make women more comfortable so that they can have sex more often so that they can get pregnant.
Brigid [00:12:40] Yeah. So there are some good sites, I think from the RANZCOG called steering committee that you're on were starting to follow some really good sites on Instagram, on endometriosis. So one that we've been looking at lately is EndoGram. And this is by a woman, Bridget Hustlethwaite, who actually is a triple j presenter. We really like what she puts up. She sometimes puts medical posts up, but mainly it's about her own journey and about the concept that Endo is chronic, painful, needs support. Yeah, it can be. It can be.
Patrick [00:13:10] Yes. So I think I think she's talking mostly about people who've got a serious and ongoing problem with it. Yeah. And she makes the point really well through her broadcast that it's a multidisciplinary treatment through Instagram.
Brigid [00:13:21] Yep. And there's another one @quendo, which also they run a support line for women that have endometriosis and they've recently been given a grant, four hundred eighty thousand dollars from the Queensland government to put together an app for monitoring. And so it's probably good to have a keep an eye out for that.
Patrick [00:13:39] I think that's an interesting one, because, again, it's building up a sense in the patient community. Yeah. That part of managing this well is the patient's responsibility. Yes. Yeah. Yeah. So there's some really great gynecologists and pelvicfloor physiotherapists and so forth out there. But they can't find you. Sometimes you have to find them. Yes. Yeah. And the more you know about your condition, the more likely you are to personally have an idea whether you whether your symptoms compared to others, a mild, moderate or severe and what treatment you might need and take some of the responsibility for finding them.
Brigid [00:14:12] And if you are, you know, in this stage and you're doing very concentrated on making a baby, then go back and listen to Episode 2, which is how to track your ovulation like a ninja.
Patrick [00:14:23] Yeah, absolutely. Because a lot of that advice is the same. Yeah. But I would say that the two clinches are if you've already been diagnosed with endo number one. Come off your contraception and really assess what your symptoms are doing. Yeah. Okay. You may need further treatment before you can conceive. And number two, if you come off your contraception and feel totally fine, if you've had a history of endometriosis, then the one year rule does not apply to you at six months, tops.
Brigid [00:14:46] And it's probably best to take a diary for these things. So really sort of be present and quite logical in how your managing this process of getting pregnant. All right, Paddy, that's all my questions. Have you got any more questions?
Patrick [00:15:01] I think we'll probably return to Endo from time to time because I'm actually learning a lot from being involved in this committee. But I hope today some information has been useful to someone who goes right, I have been treated successfully for endometriosis. And that's that's worth knowing in a few years time when I try for a baby. Yeah, but the rules are the rules for me might be a bit different. Yeah.
Brigid [00:15:23] All right. Well, people will see you next week. Thanks so much for joining us and listening to our podcast. It's been great to know that so many people getting helped. That's what we're here for. So if you've got any questions, why don't you just give us a DM on our Instagram page @grow_my_baby. And suggestions for podcast topics. Love it. Yeah. We do love it. And you tell us when we put this podcast up. We'll put the Instagram post up and just tell us how your journey with endo was. We'll see you next time. Bye now.