One in 10 women suffer from Endometriosis, yet it takes an average of 10 years for women to receive a diagnosis. Read that again. Endometriosis, a debilitating disease that so many women suffer from — one that can cause infertility, painful periods, GI issues, and countless other symptoms — is among the hardest to diagnose. It can even take undergoing a surgery to discover the source of years-long suffering. That’s why talking about Endometriosis and the unpredictable pain that comes along with it is so important. Thankfully, cannabis has proven to be an incredible tool for women who are struggling with painful Endo symptoms, and in this emotional episode, we hear from women who found that relief.
Ellen Scanlon (00:00):
This podcast, discusses cannabis and is intended for audiences 21 and over.
Jessica Murnane (00:05):
I think the question that I hear the most is just is this normal dot dot dot. Because a lot of us with Endo don’t even know what all the symptoms are. When I speak to girls in high school, you have to think about when you were 16. It was kind of strange if a woman came in and started talking about periods and this crazy disease that they had never heard of, no one wants to raise their hand. But I will always have at least two young girls come up to me and say, I think I have this. And obviously we can’t diagnose someone in a session in high school, but the fact that they are able to recognize, “Oh my gosh, having painful periods, having GI symptoms, having fatigue, bleeding through my pants at school is not normal.”
Ellen Scanlon (00:57):
Welcome to How to Do the Pot, a podcast, demystifying cannabis for women. I’m Ellen Scanlon. You just heard from Jessica Murnane, the South Carolina based Endometriosis advocate and author of two great books, know Your Endo and a cookbook called One Part Plan. This summer, we are re-releasing some of our most popular episodes about how cannabis is helping women improve their health and treat symptoms of disease without the pharmaceuticals that often cause really challenging side effects. And please be warned. These episodes may have some graphic medical explanations.
Ellen Scanlon (01:37):
I’ve also been getting a lot of questions about how cannabis is helping patients with multiple sclerosis, polycystic ovarian syndrome, also known as PCOS and Parkinson’s disease. If you, or someone you know, has a personal story that you would be willing to share with us, please send an email to firstname.lastname@example.org or DM@dothepot.
Ellen Scanlon (01:59):
So what is Endometriosis? The Mayo Clinic defines it as an often painful disorder where tissue similar to the tissue that normally grows on the inside of your uterus grows outside of your uterus. In today’s episode, we hear from two women with Endometriosis, explain what the symptoms are and share why cannabis is giving hope to women living with the painful symptoms of Endo. I have Endometriosis and having cannabis to treat my symptoms has truly changed my life. I’m so passionate about sharing this information and really hope it helps you or someone you love who may be facing health issues and is looking for answers.
Ellen Scanlon (02:42):
On top of the painful and unpredictable monthly symptoms of Endometriosis, I’ve been sick a lot this year and have struggled with really slow recoveries. I can relate to how frustrating not feeling well for a long time can be. I’m using this time to rest and recover and would really appreciate you sharing this episode with anyone you think it might help. Thank you.
Ellen Scanlon (03:07):
Can you picture 10 of your women friends? Now think about this, one in 10 women has Endometriosis. It’s very, very, very likely that you know a woman who has it. And most women have been suffering for a long time, mostly in silence. Jessica Murnane’s pain started in her teens.
Jessica Murnane (03:28):
In high school, pretty much every single period, my mom had to come pick me up from school. So it wasn’t out of the norm that my mom picked me up every time I got my period at school or that I bled through my pants because the same thing happened to her. We just thought that, that’s what it was like.
Ellen Scanlon (03:46):
It wasn’t until her late twenties that she found out that Endometriosis was the cause of her chronic pain.
Jessica Murnane (03:51):
After a couple very traumatic ER visits, where I was in debilitating pain, I couldn’t even stand up … I feel emotional when I talk about this part, but I just remember lying on the ground, looking up at my husband and just saying, “I don’t think I’m going to make it through this one.” Almost feeling at peace that I might die that night. One of the ER doctors sent me to a doctor that sent me to another doctor and I finally found someone that believed my pain and said, “Let’s do a surgery to see what’s going on inside.” So at that point, I never even had heard of the word Endometriosis before. When they went in, I had extensive stage four Endo. They did an emergency laparotomy. The wild thing is, is that I just thought all of the pain that I had was normal until I went to the ER.
Ellen Scanlon (04:48):
Women see an average of eight doctors while they try to figure out what’s wrong, a time consuming, expensive, and often demoralizing journey. And you can only be officially diagnosed with Endometriosis after having surgery.
Jessica Murnane (05:03):
That’s if you have the financial means to see eight doctors. A lot of times when we talk about Endo, we are talking about people that got a diagnosis. But think about all of those people that are still struggling, because they’re not able to see one doctor or two doctors. A lot of time in this space it’s like, “Find a doctor that believes you. Keep searching.” Not everybody has the means to do that and so I think just knowing the symptoms and being able to empower yourself with, “Maybe this is what I have. Maybe I can start managing it if I don’t have access to get surgery,” it can be really powerful.
Ellen Scanlon (05:45):
It also takes an average of 10 years for women to be diagnosed.
Jessica Murnane (05:49):
Another misconception about Endo is that everyone that has Endo has painful periods. That’s not true. Knowing that fact, I think can be incredibly helpful for women. Because if we’re told that Endometriosis means painful periods, then if you’re experiencing other symptoms, you’re like, “Well, there’s no way I have Endo because I don’t have painful periods.” And what happens a lot of times is that with people that don’t have painful periods, they are not diagnosed until they have other types of issues, let’s say infertility or extensive GI issues, and then they might receive a diagnosis.
Jessica Murnane (06:27):
45% to 50% of unexplained, infertility or fertility issues is Endo. So I think there are a lot of people that are not diagnosed until they start down a path of fertility options, because they’re unable to get pregnant. The major symptoms of Endo, I think a lot of people with Endo do have painful periods, but fatigue, leg pain, shoulder pain, hip pain, urinary issues, GI issues, painful urination, painful diarrhea, painful sex, bloating, nausea. It’s a lot of symptoms and I think that’s what’s so complicated about it sometimes, is that if you have horrible GI issues, you’re not going to a gynecologist to talk about that, you’re going to a GI specialist. They might run you through all of these tests and can’t find anything and then you’re sent on your way and like, “We don’t know what’s wrong with you.” And it could be Endo.
Ellen Scanlon (07:30):
If these symptoms sound familiar to you’re not alone.
Jessica Murnane (07:34):
There was a study that the BBC did that out of the 13,500 people they interviewed with Endo that nearly half of them had suicidal thoughts. When I first read that it was … I can cry again thinking about it, it was so heartbreaking to me. In some ways it was validating for things that I had felt, things that I hear other people feeling. I think the mental health aspect has so many different levels because it’s not just the pain that’s making you depressed. It might be the fact that no one is believing your pain. It might be the fact that you’re not able to afford proper healthcare. It might be the financial toll that Endo has caused you. I mean, I understand being in this dark place where I was 10 years ago, before I found tools that helped me manage my Endo.
Ellen Scanlon (08:37):
Kerrigan Behrens, the co-founder of CBD wellness company, Sagely Naturals, shares a similar story about dealing with chronic pain and discovering that it was Endometriosis.
Kerrigan Behrens (08:47):
Like many women who end up figuring out that they have Endometriosis, I had it for many, many years without knowing that I had it. When I was younger, I would stay home from school, at least a day a month because my cramps were so bad. And at that time, my doctor recommended that I go on the birth control pill. I think that happened when I was like 13 years old and it definitely helped it. It allowed me to not be as debilitated by my cramps, but the cramps were still definitely really bad. And I just always thought that, that was normal. Women have cramps. What I didn’t know was that being on the floor, in a ball because you’re in so much pain was not normal. But it took me a couple decades to really progress in my understanding of what was going on with my body.
Kerrigan Behrens (09:54):
I figured it out, actually, indirectly. I had been dealing with really chronic lower back pain and it was stopping me from exercising. It was bothering me every single day and the pain was pretty acute. This was all before I was 30 years old and that didn’t seem normal. Cramps, sure, women get cramps, but to be in pain every day before you’re 30 years old, that didn’t seem normal. Without boring you with my entire story of all the doctors I saw, it literally ended up being 14. I saw chiropractors. I saw neurologists. I saw a rheumatologist because I thought maybe I had arthritis. And actually it was the rheumatologist who finally had me do a really comprehensive MRI. She called me with the results and I’ll never forget that moment because I was driving.
Kerrigan Behrens (11:03):
And she said, “We didn’t see really what we expected to see. You have a cyst in your ovary and it’s called an Endometrioma and it means you have a disease called Endometriosis.” I had never heard of it before. And she said, “I have no idea if this is why you’ve been in pain or not, but you really should go see a gynecologist.” And one of the things that she said was, “Well, it’s a disease that can cause infertility.” So I had to pull over because I was crying. I had not expected to hear that and it also just felt scary and unfamiliar.
Kerrigan Behrens (11:44):
In one sense, I was lucky that I had had this MRI because most women who have Endometriosis don’t necessarily have things that are visible in MRIs. So to have the cyst, made the problem a lot more obvious and from there I was able to take steps to actually deal with the Endometriosis itself, including things like surgery. But part of the problem with the disease is that unless you have a cyst like I did, you can’t diagnose it without surgery. So I don’t think most women would be voluntarily signing up for a surgery for something that they don’t know that they even have.
Kerrigan Behrens (12:30):
I had the cyst removed. I also had all of the Endometrial cells, all of the buildup removed. The way that it was best described to me was like a system of cobwebs that grow in and outside of your reproductive system. And so I knew going into the surgery that I was going to need to have the cobwebs removed as well as the cyst removed. What I didn’t know going into the surgery was that I was also going to end up needing my appendix removed because it was so inflamed from all of the Endometrial cells sticking to it. And that’s, I think, actually not all that uncommon is it can cause different organs to fuse. It can cause organs to be inflamed. So I went into the surgery having signed something saying please take out as much as you can and woke up. And they were like, “Yep, so had to take out your appendix,” which was not expected.
Ellen Scanlon (13:41):
Managing chronic monthly pain for many women with Endo feels like their other part-time job. Kerrigan describes what she used for pain and how discovering CBD changed her life.
Kerrigan Behrens (13:53):
A lot of Advil, which ended up being really problematic because I was taking so much of it that I almost got an ulcer. Advil helped with the cramps, but it didn’t help with that still unidentifiable pain that I have in my lower back. What did help was using CBD. And that’s part of the reason why I never looked back after trying it for the first time. It became a passion for me so quickly because I was in such desperate need for it, that within a month of trying CBD for the first time I was starting my company.
Ellen Scanlon (14:40):
She describes the first time she tried CBD and its effect on her body.
Kerrigan Behrens (14:47):
In 2015, when I saw it on a friend’s kitchen counter, it was CBD honey. I basically ran over to it and was like, “Can I have some?” And I dissolved some into a cup of hot water and an hour later my body was just more relaxed than it had been in a really long time. And when you deal with chronic pain, I don’t think you even realize how much your body tenses up between anxiety and then pain. I think I’m just in a constant state of tension, clenching my muscles. And so that was the first thing that I noticed was that my body relaxed. Then I noticed that I was in less pain and then I noticed that I was also feeling less anxious than I normally do. That was the true “aha” moment. Like, “Wow, this is going to change my life.”
Ellen Scanlon (15:49):
Jessica had a similar experience the first time she tried cannabis.
Jessica Murnane (15:53):
I actually was someone that was one of those straight edge kids that hung out with the straight edge punk kids in high school and college. And so to me, drugs and alcohol were really uncool. I actually didn’t try cannabis for the first time until I was 33 years old. I tried it because a friend I was with told me, he was like, “Just try it, just try it.” And I don’t know why, but that night I decided to try it. And the way that my body relaxed, I feel for the first time in maybe my whole life since I got my period, it felt so incredible. I didn’t even do any research about it afterwards. I just felt like, “Okay, so this works. This is going to help me.”
Jessica Murnane (16:41):
And then after discovering it, I definitely, for myself overdid it, where every single night I was getting extremely high to the point where I was not very functional and that was not sustainable for me. So I learned to use cannabis in a way that feels right for my lifestyle and that I can just feel it’s best for me and my Endo. And there’s weeks where I don’t do it at all. There’s weeks where I do it four nights in a row. But I think for me, it’s not about a high, it’s about giving my body permission in a way to say, “Okay, you can take a break right now.” And that just feels like the biggest luxury in the world
Jessica Murnane (17:32):
With cannabis and CBD. It’s so personalized to the individual. CBD and cannabis affects everyone so differently. So it’s hard to say, “This is how much you should take, and this is how often you should do it.” And I think you really have to do that research for yourself too, after at least knowing that it can be a powerful plant to help.
Ellen Scanlon (17:55):
This is the point in the show when we tell you you have to experiment. It’s one of the reasons that I think cannabis is growing in such a word of mouth way because it’s a lot of women who’ve tried everything and cannabis is the first thing that started to work for them. And then they tell their friends. I wish it weren’t the case, but I think for a lot of people, you have to get to a place where you really have tried everything and nothing’s worked and you’re just willing to do something that might feel uncomfortable.
Jessica Murnane (18:25):
Yeah. And I think it’s similar to diet. There is no Endo diet that works for everyone. I cannot eat eggs. Someone else might be able to eat eggs just fine. I wish that I could create the most perfect Endo diet and plan for every person with Endo, but all of our bodies are so unique that I think we do have to be willing to experiment a little bit
Ellen Scanlon (18:49):
CBD is showing a lot of promise in treating the symptoms and possibly the causes of Endo. We encourage you to talk to your doctor, but we know that isn’t always easy to bring up or to find answers.
Kerrigan Behrens (19:02):
You know, the FDA does not allow us to tell people, you should use our products for the things they’re actually using them for. And that’s okay because we want to be responsible. But what’s not okay, is the thing we’re supposed to tell people is, go talk to your doctor and their doctor will have less information than we do. So I hope that that’s something that can be resolved sooner rather than later.
Ellen Scanlon (19:32):
Jessica has a practical and simple solution that I love for how to raise awareness around Endo.
Jessica Murnane (19:39):
It’s cheesy to say that knowledge is power, but in the case of Endo, it is. When we go to a gynecologist, we have to get a breast check and they give us a pamphlet about checking your breast for lumps or get a pamphlet about STDs. Where is the pamphlet on Endometriosis? The very first time you go to the gynecologist, they should give you a piece of paper that lists all the symptoms because one in 10 women have it. We need to know the symptoms. I think not knowing the symptoms, it just creates such a lag of time in getting diagnosis.
Ellen Scanlon (20:15):
When you’re at your next doctor’s appointment, consider asking your doctor for a pamphlet on Endo. And if they don’t have the information available, ask why not? Let’s start this conversation so more women don’t have to suffer.
Ellen Scanlon (20:33):
Today’s high five for managing your Endo with cannabis. Number one, know the symptoms. They can vary a lot. Painful periods, fatigue, leg pain, shoulder pain, hip pain, urinary issues, GI issues, painful urination, painful diarrhea, painful sex, bloating, nausea infertility. KnowyourEndo.com is a great resource to learn more. One of the biggest challenges with Endo is the unpredictability of the pain. Cannabis based tools can help you feel more confident that you can take care of yourself without side effects or over the counter or prescription drugs.
Ellen Scanlon (21:11):
Number two, to help manage your pain in under five minutes, try a CBD vape pen. The vaping disease was scary, but research has shown that people got sick from pens purchased in the illegal market. Try a CBD vape pen from a licensed dispensary, which is regulated and tested. And if that isn’t available where you live, check out our list of trusted CBD companies on dothepot.com.
Ellen Scanlon (21:35):
Number three, to help your pain in under 10 minutes, cannabis topicals. Rubbing a CBD cream or oil on your lower abdomen or whatever spot is the most painful for you, can bring relief to that place very quickly. Kerrigan’s company Sagely Naturals, triple test their products and has extra strength versions of their extremely popular CBD Relief and Recovery cream, which I also use.
Ellen Scanlon (22:00):
Number four, pain relief in under 15 minutes. CBD oil tinctures. Oil tinctures need to be held under your tongue for 30 to 60 seconds to get the full effects. I suggest increasing your dosage a few days before your cycle starts. So for example, try a dropper or maybe once in the morning, once in the evening, then use it as needed for pain during your period. This is where you have to experiment to find the right dose for you.
Ellen Scanlon (22:25):
Number five, pain relief and under 30 minutes. Suppositories. Suppositories look like applicator less tampons, and you insert them before you put in a tampon. Once they’re in your body, the solid becomes a liquid. So lay on your bed with your pelvis elevated for 10 to 20 minutes. They offer long lasting relief, often up to six hours. I like to wear Thinx period, underwear. I actually recommend them for anyone with Endo, no matter what you’re using for pain relief. And try suppositories from Foria Mellow or in California, women owned, Hello Again
Ellen Scanlon (23:01):
For lots more information and past episodes, visit dothepot.com. And that’s also where you can sign up for our newsletter. If you like How to Do the Pot, please rate and review us on Apple podcasts. It helps more people find the show. Thank you to our producers, Madi Fair and Nick Patri. I’m Ellen Scanlon and stay tuned for more of How to Do the Pot.
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