Episode 22: Inside the Endometriosis Support Community with Advocate Vicki Kondovski

Impromptu Zoom Meeting - July 31

VIEW RECORDING - 30 mins (No highlights): https://fathom.video/share/EpDqZQNpaa5AnJcM_Rz7ZYz7ps4xseRj

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0:00 - Endometriosis Canada Support Group

this meeting is being recorded sorry yeah that's so cool yeah yeah he seems really wonderful I'm excited to meet him yeah he's one of the smartest people I know he's so well educated on on like all these subjects and he knows like the western part and he also knows like all the holistic part to it so he's really good at combining both together and working along with the doctors in the hospitals together is he in like are you in Ontario yes I'm in Ontario okay is he out there as well yes oh yes just maybe about half an hour away actually having that in person for years we've only done online calls like video calls like this yeah but we've been talking for years oh that's so cool okay I'm going to hit start there and then we're recording okay we're just gonna jump right into it okay that sounds great oh and do you prefer to you do go by Vicki You can go by Vicki, know it's easier for most people. Okay.

1:05 - Lexi Burt (amplifyou.ca)

Okay.

1:07 - Endometriosis Canada Support Group

All right.

1:08 - Lexi Burt (amplifyou.ca)

Right. Vicki, so you run the endometriosis Canada support group and I'm would love to hear what advice or tips you have for somebody who is running a community.

1:22 - Endometriosis Canada Support Group

I'm running a community as in like a health based community, like the end of group or just any.

1:27 - Lexi Burt (amplifyou.ca)

Any community because I know it's not an easy feat and there's unique challenges that come up. So I would love to hear what your, your number one tip or piece of advice is for those people.

1:38 - Endometriosis Canada Support Group

Have people willing to help you. Like have administrators because it will be a lot of work and it's a lot to handle on your own, especially if you have a life, if you have a job, if you have a family is really difficult to keep up with everything because online is 24 hours a day. That's the people posting hate or spam and you really need to be editing it and make sure none of that. happening and make sure that everyone is following the rules and being polite to each other because we don't want any fighting on this group as well.

2:07 - Lexi Burt (amplifyou.ca)

Yeah and I just experience always. Yeah that point it really comes down to like safety as well if you don't have those people kind of moderating the group then things could get out of hand.

2:19 - Endometriosis Canada Support Group

Yes like we got for instance daily multiple times a day of like some spam that's trying to sell like a cure for everything and all cure. That's the holistic like pill that will cure everything or herb if you just like send money to this website so we have to be on top of that because we don't want anyone to fall victim to that.

2:39 - Lexi Burt (amplifyou.ca)

Absolutely so I'm really interested to hear how you started this group like what what prompted you to start this group?

2:49 - Endometriosis Canada Support Group

Well I myself have dealt with endometriosis since the age of 10 and throughout my whole childhood it was really difficult. The doctors didn't know what was wrong with me and eventually they assumed. that I was making it up because of the face would say that a lot of children would make up tummy pains or that there's stomach hurts for attention. And then eventually by the time I was in college the pain was so severe that I couldn't move in the floor and I finally did see someone, a gynecologist that told me about endometriosis and they said the only way to diagnose it is to actually have surgery and so they make the holes to go in and see if you have it and if they do they remove it but they didn't tell me that they could come back and so since then in total right now I've had six surgeries and by the time I was waiting for my third I was in so much pain and I wasn't getting the help here and as much as my loved ones around me are very caring and supportive they don't understand like the whole thing of being a patient especially a female with endometriosis and everything that entails not being able to work not being able to be the mother that you want to be and so I looked online for the first time for a support group and I was not able to find any in Canada online but I found many in the US in fact I found for every state they had one or just about so I thought if we don't have one I'll start my own and so that I try to help other people so that they don't go through what I'm going through and feel alone as well so I've tried to help build this community so we can support each other we can share our experiences with each other people share which doctors they've seen why they like them or why they don't what medications are working for them and what their side effects have been so it's really great like for the patients to go on as well as people that are not sure if they have endo but think they might so that way they can see what to look at or what the signs are and how to advocate for yourself because that's varying points.

4:54 - Lexi Burt (amplifyou.ca)

I really love to hear those stories where somebody's gone through something tragic and obviously it's great if that doesn't work. doesn't happen, but you took that and we're able to adapt it into something positive for so many women. think you have about 8,000 members in the group right now.

5:10 - Endometriosis Canada Support Group

Yeah, it's just under 8,000.

5:13 - Lexi Burt (amplifyou.ca)

That's so amazing. Yes, and just the conversations that are occurring in there are, as you mentioned, conversations that women might not be having with the people closest to them because it is a very hard thing to share with people who aren't going through it. So yeah, I'm just so blown away to hear that.

5:37 - Endometriosis Canada Support Group

Yeah, like sometimes you might share some of your symptoms with someone close to you, but you might be embarrassed or not feel open enough to share all of your symptoms where you could with someone else that's going through the same thing. And also they, because they're going through the same thing, they can have more empathy towards you, and they might even have advice on things that could help that maybe work for them. And if we don't share

6:00 - Lexi Burt (amplifyou.ca)

those experiences, we're losing so much information and we're all going to be struggling even more than I do just want to share because this is come up while you were speaking was just the fact that we're talking about female health and historically women haven't been able to share about their health and be honest and transparent and there's been a lot of shame attached to the female body and I think it's so empowering to see women actually talk about what's going on in their bodies and and start noticing like this isn't normal because I think we might notice that something's not normal but we don't talk about it or we're ashamed about it or told that it's not actually happening or it's in our head so I see this whole community as like very revolutionary for women's health and opening up the conversation honestly about the female body.

6:59 - Endometriosis Canada Support Group

Exactly that's why it's so important that we can all be open with each other, we can share exactly what's happening to our body, whether it's hot flashes, like I'm experiencing at the moment, from having a misdirecting last year, or some people have very heavy periods where they're not able to get out of bed, because they're so heavy, or some people are going through infertility because of that, and that can be also hard to talk with us.

7:26 - Lexi Burt (amplifyou.ca)

How long has this group existed for?

7:29 - Endometriosis Canada Support Group

did you start this? It's been approximately nine years.

7:33 - Lexi Burt (amplifyou.ca)

Wow, nine years? almost a decade.

7:36 - Endometriosis Canada Support Group

Oh my gosh.

7:38 - Lexi Burt (amplifyou.ca)

When you first started this group, what were your goals or intentions for it?

7:45 - Endometriosis Canada Support Group

My goals were just to be somewhere where we can support each other. Where we can communicate with each other what's happening and maybe share tips, because, like for instance, a lot of people don't know like all the signs of endo. So you might know. you have endometriosis and know that pelvic pain during your periods could be from endometriosis, but you also might have pain with bowel movements, and you might not know that that's endometriosis, unless you speak to other people that are going through the same thing. So that's a great, that was one of the main aspects of the group was so that we can share everything we're going through and learn more from other patients that maybe have been going through the same thing for even longer or experiencing other things that we aren't or just aren't yet and might happen to us in the future.

8:36 - Lexi Burt (amplifyou.ca)

So now that you've been working on this group for nine years, do you think your intentions or goals have changed and do you have any dreams for the group?

8:49 - Endometriosis Canada Support Group

I do have dreams. My goal is still the same and that's our main focus. Like I've had offers for people to purchase the group for their own. like intentions but I've always wanted to keep it open and free so that it's available to everybody because especially going through endometriosis a lot of people are not able to work or they're on disability and it can take many years to even get approved for disability so I wanted to make sure that this was free for everybody but another thing that we're looking to add in is we're working with doctors in other countries that also do these type of surgeries and can help women with endometriosis that are waiting years in Canada for help and are not finding that their doctors here are helping or the weight is sometimes too much for them to bear so we have doctors in California and Mexico and Romania all over that provide these services for these patients and many people in the group have already been to some of these countries for help so we're trying to make it easier and trying to work with these doctors where we can maybe create payment plans for the patients where we and say show them that it can be easy if you want it if you want other options available to you, not just what is in Canada, and to have it available where you can do payment plans and have it with a trusted doctor that is vetted, which is the main thing that we bet the doctors and that we know how much experience they've had, what their success rate is before we actually say as group that we would back that doctor up or a referendum into them. Yeah, I think the new just the new side but like I said the main part is support as always for one another.

10:38 - Lexi Burt (amplifyou.ca)

Well and I think this is something that we're seeing people ask for and the thing is as you mentioned the inappropriate length of wait times for women to actually get access to a specialist or a surgeon if that's what they need is kind of atrocious in Canada. So there is this new conversation about going out of country. I want to get your opinion on the that specifically, what do you think about the fact that Canadian women are unable to get support in their home country and are now going out of country to get this support?

11:15 - Endometriosis Canada Support Group

Well, it's devastating. It's heartbreaking. It brings me to here. Sometimes I was one of those people. I had to go out of country for care. I actually have surgery with Dr. Cameron Najab in California. He's a specialist from Stanford. He's probably one of the best, if not the best, endosurgeon in the world. And after waiting three years for care here, I had to wait one year for an appointment, which is normal. And then one year of them throwing different hormonal medications that you just see if any of them work. And then after that, then they'll schedule you for surgery, which can also take another year. So three years and that's a long time. And so Some people can't bear waiting because the pain is just so overwhelming and devastating that you can't get out of the bed, you're in a wheelchair, you can't walk sometimes. So some women are not even just women, but all genders, because it can also affect men rarely, but it can can travel out of the country if they don't want to wait. In my case, it was that the doctor was not able to remove all the endometriosis where I had a frozen pellet, where everything was fully together. And so they removed as much as they could, but they were not able to do the work to save the kidney. So I made the tough decision to fly out of the country, and I'm really thankful that I found Dr. Nijat. And I feel like if I knew that it wasn't going to be so difficult to do something like that, and maybe not have waited so long, we would have done it sooner. And I just want other people to know that that option is there for them if they want.

12:56 - Lexi Burt (amplifyou.ca)

Wow, how do people who might be interested in that out of country option, like what are the steps that they take to find those resources and make that plan?

13:09 - Endometriosis Canada Support Group

Well first I would look online for the best known endo surgeons. Nancy's Nook is a great place. They're on Facebook and they can also provide you with a list of endo surgeons and then I would write your story, like reach out to them online, email them what you've been going through, your symptoms, your struggle and they might respond back to you and say that they would take on your case and if that's so then that's wonderful. Sometimes you get the choice where I had of a couple different doctors and you can pick which one you want to go to. You can see what the cost is of not just the surgery but also of staying there before you come home because you built me to recover. Like I was in California for almost a month before I could come back home. So I advise everyone to do the research online until so we can at least provide. know a lot of people on the group have provided names of doctors in Romania, and I chair Dr. Nishat in California, who I personally saw, and just do the research to make sure that they are reputable and safe, and just write to them and reach out, tell them that you're sorry.

14:20 - Lexi Burt (amplifyou.ca)

If you could say one thing to the specialists in Canada about this wait time and the trouble of getting access, what would you say to them?

14:33 - Endometriosis Canada Support Group

I know it's not fair fault, the doctor's Thursday, but it's the whole system. would say that it's not just like a period illness, that it is something that affects the entire body, because not every doctor knows that as well. It's surprising how many in our healthcare system are not aware of what the symptoms of endometriosis are, let alone that they can travel. to your lungs, brain, your eye, your skin, anywhere. And the longer we wait, the more it spreads, just like with cancer, the longer you wait, the more it's gonna spread in your body. And we never know how much it's gonna spread. It could block your tubes so that you won't be able to have an activity and you could have it go in the lining of your uterus, or I had to have my uterus removed because of it. It can go on your appendix, it can go anywhere. And it's so important for the doctors to know that, not just as a preventative matter, or to look out for in symptoms, but also when they're operating to look out for that and know that they might need specialists, like a thoracic surgeon in the room, if there is possible endo in the lungs as well, or anywhere else in the matter, whatever specialist we might need to work together.

15:53 - Lexi Burt (amplifyou.ca)

And it's great that you've identified so many different specialists, and I'm sure in Canada, through the group as well, that are... are doing this good work and are educating themselves but they really need to be the leading example for all the other doctors in that area to be like educating themselves, knowing what the risk factors are, knowing what to look for to really set the stage for everyone else because from my understanding endometriosis isn't being taught in medical schools.

16:24 - Endometriosis Canada Support Group

No, it is a subspecialty if you go to school to be kind of gynecologist and then there's a specialty under that so not every gynecologist is educated on this and before maybe in the 80s and 90s I believe a lot of gynecologists were doing these surgeries to remove it without really knowing um like endometriosis can be present in the body as different colors depending on where you find it and some of these surgeons were not even aware of that and would only remove what they thought was endo but then relieving so much behind and then the patients would end up needing multiple surgeries. And so now, a lot of the time, the cases where you are referred to a gynecologist that specializes in an underneath herosis, and we even have some I know in Ontario that are for complicated cases such as McMaster Hospital has with Dr.

17:15 - Lexi Burt (amplifyou.ca)

cking. The fact that we're in: 2024

17:40 - Endometriosis Canada Support Group

Yes, it's believed this probably maybe even 20 or 40 percent of women, because it can go undiagnosed, people can even have it and not have any pain or symptoms based on where it is or the severity of it, because some people can have very little. Also, and they could have it close to a nerve or it could cause a lot of pain or you you can have a lot and have it in an area that doesn't cause lot of pain and you might not even be aware of it or you might just think some people are told they have IBS instead of endometriosis also in the beginning so you might not even know and just think your symptoms are all blamed on another illness.

18:17 - Lexi Burt (amplifyou.ca)

Yes and that's the issue because there's so many different co-occurring diseases and afflictions that go with endometriosis like digestive issues like immuno like immune system complications and allergies and sensitivities and all these things so I think the work that you're doing and the work that I'm doing of spreading the word of like yes this might be a sign that there's something more because women aren't getting that information from the places that they're supposed to get it which is the medical system.

18:52 - Endometriosis Canada Support Group

Definitely and that's why these communities online are so important so that we can learn from others either via by a podcast or by social support groups online, just so we can learn everything that we need to look out for so that we know, oh, maybe I don't have IVS, maybe I do have Fendo, or maybe the pain I have with my period isn't normal for the lot of time we're told as females that, oh, people just have more pain than others and you just have to deal with it. And I, for instance, I was told that during my teens and I was missing school and I now have a 12 year old that's missing school because of it often and she is suspected to have endo and it's just heartbreaking. So it's not just adults that are suffering too, but it's also the female children and anyone born with uterus and they're suffering from such a young age and it's impacting their education. impacts our whole society as a huge economic burden. I think it's $1.8 billion on the Canadian society all together with loss of products. activity of work hours and all the surgeries. So it is a huge of burden on our country.

20:06 - Lexi Burt (amplifyou.ca)

And again, it is shocking given that we know the economical impacts and we know the ramifications this has on individuals, adults and youth, but still the education is so subpar for the people that are supposed to be helping and even the people like general society. I wanted to go back to one thing you said about even endometriosis being found in males. I wanted to share that I made a post in your group and someone responded to me that they were actually their intersects and they have endometriosis. And I thought that was just so paradigm shifting because we're talking about this as a women's health crisis. And while it does affect most women, I think the inclusivity side of things. We're forgetting. things about transgender people, intersex people. So, I'm still learning and I'm trying to be engaged, but that was like a huge, huge moment for me.

21:13 - Endometriosis Canada Support Group

Yeah, as women, we struggle enough to get healthcare for our trans community or suffering with endometriosis. It was a huge disservice, what is happening to them. They are not receiving the care they showed too many doctors are dismissing or thinking they just can't possibly have endo or just don't want to deal with the case. And we need to have more education for our doctors. need to be more aware of every body type and just what is happening because this is not something rare. Like you said, we know for sure that it is 10% of the females and that's huge. That's not a little number. And so, if our doctors were more educated, then we would be able to get diagnosed a lot sooner. might even have tests that diagnose it so that we're not having to have surgery to diagnose it, which which is a lot because it's a huge stress on the body. There's complications that can occur, and especially with multiple surgeries, you have the increased chance of more ability. And for instance, I had an injury that occurred in the surgery where I had a tear in my hip. It can happen like any type of surgery where you can get injured. It's rare, but it can be very devastating for people. And having multiple surgeries is just, it's a lot, not for our bodies, but as I said, for the Canadian economy, with how much is costing our hospitals, with how the wait times are then being prolonged, by people having three, four surgeries instead of one. And we also were in the endometriosis to remove it before when we know that the gold standard of care is to do excision where they cut it from the root. Because if you laser it, you leave the roots behind. And then, You're most likely going to have it grow back and then need those multiple surgeries, so it's just a big loop that we keep going through of just struggling, which is why it's important to have people like you and our community just trying to help us on another level and to show us that there are other options.

23:19 - Lexi Burt (amplifyou.ca)

Yeah, you mentioned just the challenge that the trans community specifically faces with getting equitable access to health care, like generally, never mind endometriosis, but generally, and then, of course, women. What piece of advice or tips do you have on self advocating? Because I think that is the huge piece in navigating the medical system, yet there's kind of this power differential between doctors are the educated, all knowing, know, omnipotent beings, and we're just the patients who are supposed to listen to what we're told. So, yeah, what pieces of advice do you have on self-advocacy?

24:05 - Endometriosis Canada Support Group

Yes, doctors are great, they do know more than the average person, but we also know our bodies more than anyone else. So, it's very important to advocate for yourself. It's important to keep track, maybe have a journal or keep track in your cell phone, of your symptoms, what day they're happening. If there's a pattern of them happening on certain days of your cycle, and also it's important to bring someone with you to be in appointment, because sometimes it's hard to remember everything, or we're also going through the symptoms and it can be hard to concentrate while you're in pain or if you're nauseous, and it's a lot of stress trying to handle that this is all happening to our body and everything that we need to remember and to know. And so having someone with us that can maybe write things down or help remember things for us when we get home is important. Like I said, writing things down, I would definitely do that if you don't have somebody With you, so bring in no pads, you can write down notes. Sometimes the doctor will tell you, for instance, three or four different medications that might help, and they'll say, which one would you prefer to start off with? And they'll have you pick, or they'll tell you which one they suggest. And if you can write them all down, then you can do the research at home, and you can talk to other people in the community to see which other patients have gone through this, and which medications have had the greatest side effects on them. And just see what the community feels regarding all of this, because for instance, Lupron was being pushed a lot, and Lupron was originally, I believe, a prostate cancer drug, and that has a lot of horrible side effects. There are people that say that it has helped them, but I would probably say it's more that say that it was devastating to their health, that they would have symptoms that did not go away, that they were left with for their whole life. There's even a Lupron victim. some website of people that passed away because of the medication. So these medications can be very dangerous. Hormones alone are very dangerous and that's not something that is taught a lot about hormones or the hormones affect everything from our heart to our blood pressure. It's very important to know that this can affect our whole body.

26:23 - Lexi Burt (amplifyou.ca)

Absolutely. Yeah, those are great tips. I also wanted to share with the listeners that I created an appointment checklist. you can fill this out before you go into your appointment, all the questions that you might be asked about your family history, the symptoms, what days they're occurring, and then there's actually a notepad at the back where you can write all the questions or notes from your doctor's appointment. So it's all in one little journal, one checklist that you can bring with you and I will link that in the show notes. That is wonderful. Yes, thank you.

27:00 - Endometriosis Canada Support Group

So I'm just going to add that we also have in the support group, there is not that type of checklist, we have one for people that are preparing for surgery of what you might want to bring with you for surgery. So that is another good thing to look into if you were going to have a laparoscopic surgery for under the drugs.

27:17 - Lexi Burt (amplifyou.ca)

I also link that in the show notes so listeners can go access that easily there and the link to join the show, sorry, the link to join the group on Facebook. And while we're wrapping up here, Vicki, what piece of advice do you have for our listeners on their quest for wholeness?

27:36 - Endometriosis Canada Support Group

I would definitely recommend having a multidisciplinary team in that I mean having maybe a physiotherapist such as pelvic physiotherapy, definitely help if you're suffering from pelvic pain. Also it can help with any kind of abdominal pain that you go to physiotherapy. They can help you with breathing techniques. Breathing is also very important, it does a lot of people. people don't really realize that we're not really properly sometimes. We're not using our diaphragm or we're only using our lungs sometimes if you're holding your stomach too tight because a lot of people of pain are just like tightening those pelvic muscles and then not getting in enough oxygen which we need to help repair everything in our bodies. And I would also recommend talking to people in your community to help spread the word whether it be your church or just your neighbors, your friends, your relatives letting them know about this in case they have daughters or nieces or like just a girlfriend or anyone that they know that could be suffering through this so that they could be there to support them and help them as well.

28:47 - Lexi Burt (amplifyou.ca)

What a great answer and Vicki thank you so much for being here today. I know this was your first podcast so I'm honored to have had that experience with you and as you know the work that you do and the group that you have is so. close and dear to my heart. So thank you for all the work you do.

29:04 - Endometriosis Canada Support Group

And if anyone has questions or wants to connect with you, where's the best place they can find you? You can reach out to us by email at endo-fight-for-pure at gmail.com or at our Facebook group which is the biggest group right now that we use for for contacting our patients. We also do support group meetings online through there and we have our checklist mostly on there for the surgeries and for the doctors and the medications. So that would be endometriosis Canada at Facebook, which I believe you will have posted, I believe. So yeah, either the gmail or there. also have Instagram and Twitter or sorry, but our Facebook group is where we have most of our services provided.

29:54 - Lexi Burt (amplifyou.ca)

Awesome, well thank you so much for your time today.

29:57 - Endometriosis Canada Support Group

Thank you and thanks for inviting me.