My Journey with Endometriosis: Diagnosis, Management, and Tips!

Let's get up and personal with how I got started with endometriosis.

We talk about my experience at uni, struggling with chronic pain and misdiagnoses, surgery, post-op, diet, and symptoms of endo you didn't know about. 

Learn from my experience, and grab my top tips for managing endo. 

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Transcript

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Welcome to the Dietician Dispatch, hosted by Alia Gaznavi, registered dietitian specializing in women's health, bringing you clarity with nutrition and evidence-based science. This episode we dive into my story with endometriosis and why I decided to niche down into working with endo patients. It all starts with confusion, not knowing what was actually going on in my body, pain that comes and goes for no apparent reason, and dozens of GP visits, tests, scans, and nothing. This is my journey with endo and how I went from healthy normal life to unbearable chronic pain to now managing my life with something called endometriosis. Endometriosis affects one in seven Australian women. It's genetic, and if your mother, your sister, or your grandmother have it, it can actually increase your chances of having it yourself by 10 times. Scientists believe it could be influenced by trauma earlier in life, but reasons for its development are still not well understood, as we know with women's health. Endo is actually an inflammatory and hormonal condition. It has nothing to do with being a bad period or being a uterine condition. It comes with a load of symptoms, which we will talk about, that affect a variety of bodily systems. So that includes your immune system, your gastrointestinal system, and the reproductive system, and that's only to name a few. It's not situated in one area either. We know endo is the growth of endometrial-like tissue, meaning it is not endometrial tissue, but it is similar to it. It grows and expands in an indiscriminatory way, so it can go anywhere in the body. They've even found it on the eye. Crazy, I know. Now let's look at its features. So it can grow and spread in the body, ranging from small dots, which we would associate with stage one endometriosis, to huge lesions that attach to your organs and make a web, and that would be associated with what we call stage four endometriosis, where it is called deep infiltrating endo, which attaches your organs together. Another thing we need to note is that the stage of endometriosis does not associate with the amount of pain or symptoms you have. So you could have stage one endo and have insurmountable pain, or you could have stage four endo and no symptoms. It is also fed by oestrogen overgrowth and inflammatory markers in the body. So stress is not great for endo. It actually feeds it. But did you know that if you have an autoimmune disease, it actually increases the risk of endo and vice versa? So things like Hashimoto's. And we know that the likelihood of you having endo, you could also have things like adenomyiosis at the same time, or even PMOS as well. So women do not have it easy, guys. Another thing is that it can create its own blood supply and oestrogen. So getting rid of something that is self-sufficient is extremely difficult. It is also resistant to progesterone and removal from the body, like we mentioned. So endo isn't something your body can actually clear on its own because it recognizes endo as its self or its own tissue. That's why it is an incurable disease at this point. It does not disappear with a change in your diet, reducing stress, or taking a special supplement. We currently know that the gold standard for managing endo and getting a diagnosis is excision surgery by an endo specialist. So that is actually cutting out those lesions from the body, removing them, to actually manage symptoms. I know surgery is not exactly a non-invasive measure, but with limited research, we know that this procedure is one major way we can provide relief to women suffering with major symptoms of endometriosis. So, what are the actual symptoms of endo, though? Let's actually understand that so we can identify it. So the major ones that I list are as such. So chronic pelvic pain, of course. So that is when it is in the region where your uterus is, so just below your belly button. Endobelly or painful bloating. So this is where your stomach becomes hard and descends to the point where it can look like you're six months pregnant, and this can cause a lot of pain, can be like a stabbing pain, or some people have mentioned it to be like electrocution. So not something to downplay at all. Heavy and painful periods are also something that people use to diagnose. So, for example, if you had heavy and painful periods as a teen and that tracks into adulthood as well, that is a major sign. Gut issues and constipation particularly. A lot of endo warriors are also diagnosed with IBS, sometimes even misdiagnosed. Chronic fatigue is also a massive one. Think about it this way: if you have a lot of inflammation in your body and it is chronic, it's definitely gonna wear down on you and cause fatigue. The same goes for brain fog, so that's where it affects your nervous system. So if you've ever felt like you can't string a sentence together, that's probably why. And as you can tell, I am reading a script because if I'm not prepared, I will forget things. And I definitely want to make this concise. Other things that I always look into is anemia and iron deficiency. So iron deficiency is fairly common amongst women due to your period, you're losing blood each month, and if your absorption is not great or you're not having a lot of red meat in your diet, iron deficiency is going to be a likely scenario. Now, anemia and iron deficiency, chronic over many, many years, which it was for me, and having poor absorption of iron supplements, that can lead to anemia over a long time. So I actually had to get an iron infusion, and that was the only way I could get my iron levels up. This is quite common amongst endo warriors, and you will probably know a few people who also have anemia. Leg and back pain. So I have really bad back pain as well, and it can be made worse by standing for long periods as well. But you might know people who get shooting leg pains as well down their calves, and this is quite common for endo as well. It can also impact fertility, but this doesn't necessarily mean that women with endo can't um conceive and have children. But these are the main ones. There's a whole lot more, but those are the major ones we wanted to mention. Now we're going to dive into my actual experience and getting a diagnosis. So now that you have that background, let's see how I ended up here. So we would have to go back to 2021, 2022. I'm in the crux of my degree in year one or two, I think. In year two, so 2022, I started to see those symptoms. So I went to the University of Wongong to do a Bachelor of Nutrition and Dietetics honours. It's a four-year degree, quite intense, all science, and a little bit of background about me. I I was not a science girly in high school. I literally was an English and history major. I loved advanced English, extension English. I was a creative writer. I loved modern history and ancient history. Those were my bread and butter. And I thought I was gonna be either a historian or a journalist, something along those lines. And I actually started a Bachelor of Communications in Journalism at UTS just before COVID in 2020, after I graduated high school. And I spent about two months doing that degree, and obviously COVID happened, and my degree for those two months was online, and I was really not enjoying it. I didn't feel like it was for me, and I had a crisis and decided to drop out of that degree. And at that time, for the rest of that year, I was working part-time in hospitality and saved up some money. And then in 2021, I started my degree as a dietitian. And you're gonna ask, girl, if you didn't even do science, why did you get into this space? But I did not do chemistry or biology, I did general maths. My reason for deciding on dietetics as a pathway was because of my experience with my eating habits and my body image. I wanted to help others who had experienced disordered eating and full-on eating disorders, and I wanted to also heal my own relationship with food and alhamdulillah. I have it was a healing experience for me to be able to learn how to actually feel my body and see the impact of nutrition to actually heal sick people. But we saw as my health progressed, my niche or area of interest for nutrition and dietetics changed. So let's go back to 2022. At this stage, I was commuting to uni one twice a week, let's say. Because I did not have my driver's license or a car, I was commuting via public transport. And that took me about two hours because I would take the train and then I would take a bus. But I noticed this abnormal pain in my abdomen every time I went to uni. It was a dabbing pain, very crampy, that caused my stomach to bloat significantly, and to the point it made me look six months pregnant. And obviously, that is not normal. It can also feel like trapped gas and kind of swirling in that space. So I tried so many things, taking panidol, neurofin, you name it. None of that worked. I even tried reducing my caffeine intake, so I only having one a day, and I would notice it would get worse with tight pants and having a second coffee and doing that commute. I would always get that bloating. And you know, nothing, none of that actually helped at all. So from that point, I visited my GP almost once a week, once a fortnight, complaining about the bloating and going through tests. So we did blood tests for celiac, which obviously was negative. I did a balloon test to look at stomach bugs, which I thought it could be. At one point I thought it was appendicitis. I did pelvic ultrasounds, and obviously those came back normal because endo is very difficult to spot on ultrasounds. I asked for a referral to a gastroenterologist because I thought maybe it's gut related. Um, and she actually told me, You're too young to need that. And I was, you know, frustrated. So I went to a different doctor and simply got that referral. Once we did investigations with the gastro, I found out there was nothing wrong, did a colonoscopy, everything was fine, which was again frustrating, but this was you know months after seeing that doctor. So it's 2023. I'm in a rut because I have no answers. I'm still trying to commute to uni, but physically unable because every time I do, I'm in pain. I had to skip classes, but then my sister actually suggested to me to see her specialist. And it's a bit weird why I didn't actually connect this in the first place. But if you know nothing about endo prior, why would it come to mind? If that makes sense. So I went to see this gynee who helped other women with endo. And another thing, even today, I think women and girls are turned away from seeing gynees if they're not, you know, sexually active or pregnant. Yeah. But gynees are there for women for their reproductive health. So you should be allowed to go. It doesn't matter what's the harm in giving a referral to someone if it's just to have a conversation and see a specialist. So finally, when I was able to see her, we ran through all of my symptoms. So I had those heavy irregular periods, uh chronic gut issues, painful bloating, bendo belly, which we found out later. And I also had a sister with endo, so that increased my chances of having it significantly. So we looked at my options and she said the likelihood was high because of my family history. So we scheduled to have that laparoscopy and to get that diagnosis. At that point, I was quite nervous. I thought, oh, maybe I don't have it, you know, likelihood's probably not as high. I was really in denial about that. Um even though I had my honors years of university placements, which I was just about, we pushed obviously to get that surgery done and take precedent with my health. And we'll talk about the value of going on a pill or merino IUD for women with endo. It can help with reducing the heaviness of your period, the pain, obviously, and it can improve the regularity. You can also skip it if you needed. And like in the other episode with Dr. Coshi, we talked about the fact that going on these progesterone pills is not going to impact your fertility. So that is perfectly fine. I am going to jump to anemia, like we mentioned, and iron infusions. I had shortness of breath, difficulty breathing, and walking upstairs. Like I felt so bad. I was dizzy from standing, I had really bad chronic fatigue, uh, you name it, I had all of those symptoms, and my quality of life was not so great combined with the endo pain, and I felt nauseous a lot of the time. This was probably before we realized that the anemia was also linked to the endo. So really, all of the symptoms I had were related to the one same thing. And now, if we track to February 2024, this is still before my surgery. So I've completing I'm completing my first clinical placement, and I'm actually struggling to get through it. So typically for dietitians, we go through a five-week clinical placement. And I was struggling with nausea, anxiety, and pain, as well as obviously the anemia symptoms, and I had to miss so many days because I was unwell. Then I had the infusion, and I also had to take some more time off because I had a reaction, I had skin staining, and I had body aches after the infusion. Um, but months later, after that, I actually felt the improvement from that infusion because my iron was so low. Now, if we go to March 2024, we finally have the laparoscopy, and while it can be a bit nerve-wracking the night before, after having that done and finally getting that call to say you actually have endo, they found it, is it's so validating because it's not in your head. Imagine for two, three, four, five, seven years, women go through all of these symptoms and have no answers to why they're feeling this way, and they think that it's in their head. To finally have that validation is everything. So my recovery for the surgery took about 10 days. Uh, the average you should get is two weeks, and that is just for the physical part of things. So walking after those 14 days is fine, but I would not go back to doing, for example, strength training or running or exercise in that matter for maybe two, three months to make sure that you're actually healed because despite the fact that it is three small cuts in that area to your belly button, and they do obviously two, three, four cuts that they need to do keyhole surgery, it's still an invasive surgery, guys, and they're uh doing stuff in your body, so you need to heal properly. Now, going back to placement after those 10 days, I had to take it easy, so I was walking quite slow, uh, will lose her pants, they didn't exercise, and I would take my heat back with me. But the first period after your operation can be a bit rough, but nothing in comparison, I guess, to some of my recent endo flares. From there on out, I was advised to monitor symptoms and we started that second hormonal pill, which is a progesterone pill, to manage with the endo and periods. Now, if we go more recent, so April 2024 to the present day of May 2026. And I know that's a big jump. It's about two years, but your life will be a bit up and down, and that's okay. But things have significantly improved. It is nowhere near as bad as the years prior to getting my diagnosis. Things like theraps, pelvic pain, bloating, gut issues, they're all gonna fluctuate over time, depending on I guess what's going on in your life, your stress, and if you're keeping up with the management strategies. For me, something as simple as not drinking enough water can throw things out of whack with my gut health. So, the reality is I have to be super strict with my diet in regards to drinking a lot of water, making sure that I'm having enough fibre and actually having fruits and veggies as opposed to toast and a sandwich. We need to have fruits and veggies, guys, because whole foods are key to managing an anti-inflammatory diet. Now, I did want to do a quick section about things that will not cure your endo. So a bit of a debunking section. Now, number one, pregnancy is not gonna cure your endo, guys. Despite what doctors might say, please do not listen to that. Pregnancy is simply going to remove your period, obviously, while you're pregnant. So some of your endo symptoms might seemingly disappear while you're pregnant, but it's gonna return after you give birth, guys. So it is not gonna cure your endo. Number two is hysterectomy, but this is not gonna cure your endo, guys. So what's gonna happen is you might get rid of the period, right? But you're still gonna have the other symptoms. Endo can still grow in your body. And that's a fact. Number three and four are kind of the same thing. An organic diet or a special supplement is not going to cure your endo. Changing your diet to be focusing on more whole foods and omega-3s, sure, can help with managing symptoms like reducing inflammation and improving your bowel movements. But going on an organic diet, guys, is not gonna cure a chronic disease that can't actually clear from your body on its own. And no special supplement from someone's TikTok shop is going to cure your endo. This is a disservice, and they literally just want your money, and that is the facts. And the last one is menopause, which we talked about in the last episode of the dietitian dispatch. So, despite the facts, what you might think, because menopause, right? We have estrogen, this is estrogen, and the levels decline when you hit menopause, right? The period stops for 12 months, and you have small amounts of estrogen, and that causes problems, right? You get inability to control cholesterol, which goes up, your bone density goes down, it increases the risk of osteoporosis, osteoarthritis, and what was the other thing? And you get all of those asomotive symptoms, which we talked about in the last episode, which you should definitely go listen to. But okay, we go back to the fact that menopause causes those low levels of estrogen. So you're like, surely that means that your endosymptoms will just go away. Nah fam. And like we said previously with the hormone replacement therapy, Dr. Coshi mentioned we give progesterone and estrogen for menopause or symptoms. Manage to manage menopause or symptoms. So if you were to just throw estrogen back, it would just flare up the symptoms. So technically it does not go away. It does not cure it. Which it's a misconception, but we thought. But anyway. Now we come to the final segment, which are my top tips for endo. And these are not all, I guess, nutrition related. These are just general. I'll probably do an episode specifically about nutrition for endo, specifically for the anti inflammatory diet, low FODMAP diet, and some. Supplements, which we can talk about another time. So these are general things. So number one, do not allow dismissal and medical gaslighting to stop you from going and getting the answers you need. Even if you feel like you don't have it, how will you know if you don't go and get the answers? I like many women had to advocate for my health and push to get answers, and I would not be in the same situation if I did not. I wouldn't even know what endo was, honestly. Number two is changing your diet, but this is not where I'm saying, uh, you have to follow this strict thing. It's about learning how to fuel your body, right? Number two is how you should eat to manage your endo, which for me I use an anti-inflammatory diet, but this is all personalized, guys. So it is about focusing on having more whole foods, more fruits, veggies, legumes. We're having lean proteins like beef mints, we'll have steak occasionally, guys. We're having chicken, fish, salmon, omega-3s, all of those things, and dairy. We ain't cutting things out. And diet can particularly help with identifying things that trigger your symptoms. For example, with some clients, it might be having too much caffeine that can trigger gastrointestinal symptoms and bloating. That's just one example about how we can manage things like bloating, constipation, chronic fatigue, anemia, diet, and working with a dietitian specifically can help with all of these things. We can try different things on our own, sure. There's a lot of information out there, but wading through the misinformation is very hard if you're not specialized in it. So going to see a dietitian is a great way to actually get the right information and have it personalized to you. Don't be chat GBTing things, guys. It's bad for the environment too. Number three, do not be afraid of medications, like we talked about. There's progesterone pills, which are popular options, but there's also the marina or IUDs to help with managing those menstrual symptoms. I think of it this way: a medication is something you can easily stop taking, and you can trial and monitor for symptoms to see if it actually helps with things. So I think of it as a tool, not something that should be used to put a stop on your symptoms and just ignore it. Number four is reducing stress. This improved a lot of things for me. So wearing pants that fit better, do not keep things that do not fit, guys. And you should have a little bit of room because you never know when you're gonna blow. And the other thing it was knowing my capabilities and learning not to say yes to everything, because sometimes you need to relax and rest and allow your body to just the last thing was actually knowing my capabilities and not saying yes to everything because you need to give your body leeway, it's going through a lot. This is so important in regards to health anxiety and general anxiety, not knowing when a flare is gonna come up and the impact on that, and obviously the isolation of having a chronic disease that can impact your social life. So for me now, because I have access to a car and a license, I'm able to actually go out more, but because my pain is not as significant, I can actually go to events for a whole day, you know, and I couldn't do that before. In regards to, I guess, taking care of your mental health, this could be speaking to a psychologist about it, managing anxiety with medications if needed, and being able to actually take care of your physical health by taking care of your mental health first. It allows you to actually focus on one thing. So I say don't discount the impact of your mental health and taking medications if needed. And that is the end of this episode. So I want you guys to actually send me a DM if you have questions about things and what you would like to know about endo, my experience, and if you have specific topics that you would like me to cover and talk about can be nutrition related, or if you would like me to, I can investigate more into doing an episode about endo research. If you would like me to dabble a bit in that, I will see you next time.