The following is an interview between Maya Khamala, the interviewer, transcriber, and editor of this piece, and the interviewee, Mallika Guhan, aged 27.
When did you start experiencing symptoms of endometriosis? What were they and what was your experience?
Two key things happened:
First, I had a cyst burst. It was extremely painful and it sent me to the hospital. It was there that they said that it was likely connected to my organs, that they had twisted, and were causing a lot of pain. And there was chronic constipation, and a lot of emotional symptoms as well in the lead up to this that I had not been aware of. I’d also discovered I had a lot of food allergies and intolerances. Those were some of the first symptoms. I really just felt like something had been wrong for a long time.
And then, the second major thing that happened was my pelvic floor rose up. The pelvic floor ‘sits up’ at a certain angle so we can use our pelvic muscles, and in my case, I had so much inflammation in that area that it just closed up. And that meant I couldn’t even have a pap test it was so painful. I couldn’t do an intravaginal ultrasound, and I also couldn’t have sex. And so that was something that I had to experience at the age of 21, which was a very young, tender age to be going through serious stuff like that. It was really scary.
When were you diagnosed and how?
Because I had Ontario healthcare, I was diagnosed in Ottawa by a specialist there. He said I had endometriosis and needed to go in for pelvic floor rehabilitation. The thing with endo, though, is you can’t really be sure that’s what you have unless you have a surgery, or do an intravaginal ultrasound. But since I was not able to do those tests at the time, it was an inconclusive but suspected endometriosis. He also put me on Lupron, which is a hormone replacement therapy, even though he wasn’t sure if it was endo, which I thought, much later, was not such a good idea. I took everything in blind faith. I thought I just had to follow what the doctors said and I would get better.
I learned very quickly that these medications that were given to me were given with very little information and very little understanding of who I was. It was just sort of, like, ‘here, take this stuff.’ Three injections of Lupron were meant to bring my estrogen levels down because endometriosis is an estrogen dominant issue, and the synthetic progestin in the birth control (which was also prescribed) was meant to raise my progesterone levels at the same time. And so I went back to Montreal and I did pelvic floor therapy and took my medication. The medication really messed me up. It was like having a rug pulled out from under me. Your hormones are the basis of all your thoughts and decisions and behaviours, and if they are in flux, or not stable, or being messed around with, there can be really horrible implications. Basically I would wake up everyday not knowing how I was gonna feel. I’d be constantly crying, or in physical pain because the progestin—I later learned—can cause really bad nerve damage, nerve pain, muscular pain, and joint pain. I just felt super sick and weak all the time and I became very depressed. It was very difficult to deal with this in my early twenties, while starting a new program at school and just trying to live a normal life.
The pelvic floor therapy, however, was extremely beneficial. I got my full range of mobility back within 8 months. I was then able to have sex as well, thanks to an amazing physiotherapist in Montreal. And I was able to start having more comfortable bowel movements and ease some of the pelvic pain which was causing so much tension in my body.
What tactics did you first resort to heal yourself?
I didn’t really have tactics at the beginning because I was so overwhelmed with the medications and just kind of following the doctor in blind faith. I had therapy though, to go and talk about all of the stuff. I had really terrible, tense relationships with my family, who expected me to finish school while I was sick. My family didn’t understand how bad things were because I wasn’t really expressing it to them, or I wasn't expressing it in such a way that they felt like they could help. But also there are cultural implications, especially with the mental health stuff, because my parents are traditionally Indian and you know, some families are just generally less emotionally intelligent. It can be taboo to talk about certain things—or they just don’t have the experience.
Have your experiences with the healthcare system changed?
With the healthcare system it’s kinda been like being bounced around, back and forth, between different practitioners. Once I was able to get a family doctor in Montreal, which took a long time, it was a bit easier for me to start getting into the system and find a specialist. But it actually took me 2-3 years to find that specialist that would take me seriously and I was growing more and more frustrated and tired because I was dealing with so much fatigue and pain regularly. I would say that for at least 14 days out of the month, I’d be dealing with really severe pain. And so that really affects your brain and your energy levels, and the ability to constantly follow up and put energy into getting people to take your case seriously. So I started to become really kind of bitter about it. I started thinking, ‘I have to take this into my own hands.’ So I turned more to natural stuff for a while, until I got a specialist a little later along in my journey.
Can you describe the research you did about endometriosis and the emotions surrounding this for you?
I did a lot of research, and a lot of it made me super, super sad. And this was more, in the beginning, when my endometriosis was merely suspected, before I even got my first diagnosis. You know: the fact that you can’t have kids, potentially, since it can affect your fertility; it’s lifelong, so even if you have surgery the chances of your pain coming back are pretty high; and it may mean you have to be on synthetic hormones for the rest of your life, which can increase breast cancer and osteoporosis risks and impact your day-to-day. Then there’s the fact that women with endometriosis lose on average 10-15 hours of work per week, so a lot of them can’t hold down jobs. And that was happening to me as well. It was very difficult for me to hold down a job as my symptoms got worse—because of the medication that I was on. So it was really sad, especially for the first 2 years, and anytime I’d read about endo or talk about it, I would well up in tears, and I would feel a lot of grief for my body, and grief for my story, because I was attaching a story of sadness to my condition, This was related to my having had a tough upbringing with my family, having felt a bit of neglect, and having to grow up a bit faster because my brother has autism.
So there were a few really intense stories that I was attaching to my illness, which meant I was harbouring a lot of anger and emotion. I was definitely dealing with a lot more than just the physical manifestation of those emotions. I was dealing with the actual rawness of being this young twenty-one year old going through some really intense stuff, and trying to find my place in this world at the same time, like where I could contribute and serve my community.
Can you tell me a bit about your experience with natural practitioners?
I tried so many, so I just wanna talk about the ones that worked for me rather than go through the list.
I did homeopathy which helped a lot with controlling my PMS symptoms—which came as a result of being on all these hormone medications. I never had PMS before that. It was really helpful, but it didn’t really help with my physical problems.
I’d heard about Arvigo® Therapy and wanted to try it before, but it had not been accessible to me. Then I found Tiger Lotus Coop, and I contacted Courtney. Working with her for over a year now has helped incredibly because endometriosis affects the uterus, and can also affect digestion, as well as all the other organs in your body. I could feel that I had spots in my body that were super tender, I still had weak digestion, and I was dealing with a lot of different symptoms that were all connected to the same thing. I’ve been able to get such a beautiful release with Arvigo® Therapy.
I’ve also tried some holistic healing energy work, including quantum healing hypnosis, which really cleared out a lot of energy, past anger, and sadness, and gave me a real understanding of how the women in my lineage have all suffered some version of this. And how it’s manifested physically, in our bodies.
I also went to Yoga school in India, which reset my body after I graduated from school, and I learned a lot about Ayurveda and herbs, which has helped a lot.
I did something called mediator release testing, which is an Oxford University test to find out what’s causing inflammation on a cellular level in the body. And I was surprised to find that aside from the obvious red meat, gluten and dairy, there were actually a lot of vegetables and foods that are normally considered healthy that were causing a lot of problems for me.
Physiotherapy has worked very well in times of crisis, but I still use a lot of physiotherapy stretches and incorporate Yoga into that, and that’s been amazing.
Meditation has been a lifesaver—especially when I face burnout and energy problems. Just taking 10-15 minutes a couple times a day to sit down and reconnect to my breath, or listen to a guided meditation before bed if I can’t seem to go to sleep. Fixing my sleep pattern was a big deal, because the stress of being in constant pain can actually feed insomnia, and that was a problem I had as well.
CBD and marijuana products have been super helpful with getting flares under control faster. And also just generally for muscle pain and other symptoms that I might have. ‘Cause once you have chronic pain in one area, it can actually spread to other parts of your body, so now I have nerve damage and a couple of other things going on.
Those are the things that have helped me the most. Once I was able to start tailoring my diet a bit more to include less of those foods, provide relief with Arvigo massage, and feel like I could build a plan, I was able to finally attract a specialist from the Jewish General Hospital. And so a combination of working with the specialist and working with natural medicine has been an incredible help and given me hope that I don’t have to make my life smaller to give in to the pain.
What surgery did you recently undergo? Is it your first?
The surgery I had last week was a laparoscopic surgery. Basically, what they do is they put a camera inside you to see if they can see anything. It actually came back clear. I don’t have any growths that they can see. It doesn’t mean that I never had endo. It’s very possible that I did have it—because I had really obvious symptoms of it—and that I cleared it up myself because of all the medication and work I’ve been doing, and that the pain that’s left over is gastrointestinal, since it’s more abdominal pain now. So I’m going to see a GI specialist to run some tests, and hopefully the chronic pain will lessen from there. But it was a huge shock, because I really thought it was endo that was causing my current pain. But the only way to really have known was to do that laparoscopic surgery, so I’m really glad I did it, because it gives me a clearer direction on how to start taking care of the chronic pain moving forward.
What are your current symptoms and what does your current mode of healing them look like?
If I get a pain flare, usually a CBD or marijuana product is my go-to. Hot baths are so key. I will sometimes bathe in castor oil, or I’ll do a magnesium Epsom salt soak, ‘cause magnesium is such a natural painkiller. I take digestive enzymes especially to help with breaking down foods, especially if I know I’m gonna be eating out and won’t have control over some of the foods I eat. Estrosmart is an amazing supplement by Lorna Vanderhaeghe which helps with maintaining good levels of estrogen, and stops it from converting into bad estrogen. These things have been incredibly helpful for me.
Also, just waking up, and really tuning into my body has helped. Because I think when we live in a society that really dictates the pace that we’re supposed to live at—I’ve really had to take control over all of those things. So I now work for myself, and it might seem harder, but setting up my own business, or working freelance has actually been more of a blessing because I have more control over my schedule, and more control of what I can eat and cook for myself. I get to choose when I want to see people and when I want time to myself, and schedule in the breaks as and when I need them, and so I think that’s given me a lot of empowerment in my healing. And having a really good circle of friends and connecting to the community is super important as well. I think what helps is really taking stock of who is supporting you and who cares for you, so that you’re not dealing with unnecessary stress. ‘Cause there’s always gonna be necessary stress in life, but unnecessary stress can be the tipping point sometimes.
Do you expect to be totally rid of symptoms at some point?
You know, I actually think I can do it. I really feel like it’s possible to be totally rid of symptoms. I’ve read, particularly for women with endo, that they’ve been able to reverse their symptoms—they might still have sensitive digestion issues, or nerve problems, or pain, or whatever, but to not be in pain every single day is a possibility. It just takes a lot of time, a lot of targeted effort, and it takes surrendering to the disease in a way that might feel like it becomes your life. But it’s gonna become your life anyway, so you get the choice: do you want to kinda sit there and let things happen to you, or do you want to take action and create the best possible environment for your body to get better?
I’ve seen women get better, I’ve seen them go on to have amazing careers, I’ve seen them go into remission, I’ve seen them—similar to me—get better on the endo side, but still deal with other stuff that got triggered because of it. But it’s possible to fully heal, as long as you’re able to manage it, and as long as you’re able to really tune into what your triggers are and what is causing the problems in the first place. And that also means going there emotionally and getting very deep into that stuff, which can be very uncomfortable, and then releasing all of it. It’s not just a physical problem. For me it has been emotional, mental, spiritual, it’s everything, you know? And it kind of makes you get really real about everything.
Have you reflected in-depth on the emotional realities you've experienced along with your other symptoms?
I have, and the emotional reality is that it’s very difficult for women who don’t have access to certain services to be able to get better, and to feel that hope that they can heal themselves. I’m very fortunate that I was able to save a lot of the income I was making and put it towards my health, because my parents helped me out, you know, or my partner was able to cover some costs.
I think it’s really important to recognize that the medical system a) doesn’t help women because they make a lot of money off us when it comes to birth control and medical products, and b) if you have women or women-identifying folk from marginalized societies or socioeconomic backgrounds who are unable to access these services—especially the ‘additional’ natural services—it can get really complicated, because this kind of care is just necessary.
Right now, the answer for endometriosis is just drugs and hormones, and that’s not enough. It doesn’t get to the source of the problem. The education around endometriosis needs to be broadened, and the services that are necessary for women too. Arvigo therapy, for example—what Tiger Lotus Coop is able to do is offer it at a very low cost, and sometimes even free, at their Community Healing Days. And that’s really, really important. It’s important that we are able to get some of these services out there so that all women or women-identifying folk from any socioeconomic background can have access.
Have you reflected on the deeper causes of your symptoms?
Yeah, I have. It seems that all the women in my lineage have dealt with some version of this. It’s how we manifest our emotions. How I’ve manifested my emotions went into my body. You know, living in my head and not being connected to my body. That’s always how I kind of lived my life. I never would have sought balance if this hadn’t happened to me. I definitely think there’s emotional components. There’s also environmental components because there’s so much estrogen and hormones in makeup, in the water, and in our foods, and hidden substances that disrupt our hormones can cause these problems too. I think that’s one of the biggest systemic problems causing this increase in hormone-related conditions. Also, just the way the body manifests stress. Some of it on some level is genetic, but on top of that, a society that doesn’t support women’s health is exacerbating the problem. That’s why you’re seeing more and more women getting sick.
What advice would you give someone newly diagnosed with endometriosis?
First of all, do not take what your doctor says with blind faith. Do your research, find a combination of both natural—if you can afford it—and conventional medicine. I’ve found that a balance of that has worked really well. I’m also part of an endometriosis forum, and have found that so many women have been able to heal themselves with a lot of natural elements.
But again, if it’s a matter of cost, just take your time, try to make your decisions from a place of love for yourself and wanting to get better, rather than fear. That was a mistake that I made. I was just fearful, and all my decisions came from that, and it was something that I had to learn the hard way. Also, give yourself time to grieve because it is a really difficult condition. It relates to your womb, which is an area of creativity and fertility.
Also, just the idea of having a longterm condition can be really frustrating and upsetting, and I find that mindset work is really helpful and empowering. So instead of saying, ‘oh god, now I have to put all my time and money into this,’ say, ’no, I want to invest my time and money into myself to get better,’ or instead of saying, ‘I’m a sick person,’ you say, ‘no, I’m just a person who has certain symptoms sometimes, and I’m going to get myself better.’ And while it’s easier said than done, it’s an incredible mode as you move through all the various stages of dealing with this, and it is completely possible to get better.
I just want people to know that it doesn’t have to be this agonizing thing forever, and it’ll be a huge, huge period of lessons, and it makes you stronger, more empowered, more connected, and more understanding of yourself, and the world, and the realities that women have to face. And if you can become an advocate for yourself then you can become an advocate for other women and women-identifying folk that are dealing with this as well. So that’s a really incredible thing that I feel like I’ve been able to gain from this. I’ve become the friend that is constantly educating, helping, and answering questions. That’s why I wanted to do this interview, to be able to put my story out there, ‘cause I think it can really help people.