I'm not sure if anyone will read this blog... but I decided that documenting my experiences could help someone else. It's also cathartic to just write everything out and be honest and candid about my situations. I am a professional mermaid. It defines my life. But so does the terrible disease endometriosis. In today's post, I am going to give an overview of the impact the illness has on my life. In future posts, I'm going to share specific experiences.
What is Endometriosis?
The main symptoms I experience are: extremely painful menstrual cycles. I'm talking, throw up, black out, opioids do nothing to help the pain type pain. Pelvic pain - think a charlie horse in your pelvic. Bladder pain and issues. Bowel pain and issues. Painful sex. Pedundle nerve pain. Extreme fatigue. Joint pain. Food intolerances. Dry eyes, mouth and skin. Upset stomach. Extreme bloating. For some it causes heavy bleeding but thankfully for me it doesn't. It also causes infertility and miscarriages. The picture below is an example of me during a "flare" with my bloated stomach, and then when the bloat comes down.
Endometriosis is incurable, and on average can take 8-10 years to diagnose. It's estimated that 1 in 10 people with a uterus (I say this as trans men, intersex people, and enbies can also have endo) have endo but that estimate is conservative. It's likely more. In Canada, there are very few "specialists" who can adequately treat the disease as our governing body does not see it as requiring specialist care. This makes it hard for surgeons to obtain the very specialized training needed to both identify endometriosis and remove it. There are two types of removal typically used: ablation and excision. Typically, excision is better but very few are trained in it. As such, many people only get partial removal and the surgeries do not always help. I will do a future blog that focuses more on these surgeries and treatments. For now, check out the infographic below.
Because I live where I do, I have had no luck in getting any sort of surgery. Not even a laparoscopic exploratory surgery to confirm the location of the endo in my body. I actually spent years trying to get diagnosed, with my husband rushing me to emergency for pain killer injections when the pain was too much. It was during a snow storm many years into the disease when the on call doctor made the decision to refer me to a clinic that knew more about endometriosis. Once I went there, they prescribed me hormone medication to suppress my monthly cycle and stop me from having periods. At the time, I was younger and not ready to get pregnant. This was a Godsend, and the drug, Vissane, was showing a lot of promise for reducing endo growths and improving fertility. The hope was that after a few years on this drug, I would be able to stop it, have less pain, and be able to have a baby. So for 5 years I took the drug diligently and lived my life. I still had all the endo symptoms but no painful periods.
Though taking visanne and finally having a break my periods and their pain helped a lot - I had a lot of other issues. My body was ANGRY about this pain and didn't want to function like normal. I was diagnosed with a secondary disease, Interstitial Cystitis. This illness is often co-morbid with endo, and functions in a similar way. I get sores all in the inside of my bladder. It makes me feel like I have an infection 24/7. So as you can imagine this plus the endo led to a lot of low back and pelvic pain. You know what I really didn't want during that time? Sex! Or anyone or anything poking around down there. My body needed a chance to heal and this put a strain on my relationship. It also made me feel a little "broken" because I couldn't do what other couples do without feeling immense pain.
While I was taking this break from having periods, it was time to try to heal my pelvis after all this trauma. The first step was pelvic floor physio therapy. I will go into detail about PFP in a later post, but it's an internal therapy designed to help relax those tense pelvic floor muscles. After all, they've been contracting all this time trying to protect me! I was scared to do PFP, but I actually had an amazing doctor who was super sympathetic AND had a therapy dog to help me feel calm. It was hard work in the beginning and very intimidating, but it led to excellent results. Now, I can do it at home whenever I feel the need. When I look back to my early years performing I remember all the stress this pain caused me even after I stopped my periods. I could barely make it through a 1 hour gig because I needed to pee. I found sitting in the tail so hard on my pelvic. The tail put a lot of force and pressure on my hips and back which led to more spasms and pain!
I just can't express how this new development made things so much worse. I felt like I was able to avoid one type of pain only to get another. I tried some extreme things to fix it too! I had botox shots directly into that tissue a few times. (I'll write a blog about that in more detail) I used all kinds of creams and ointments for no luck. I used dilator therapy with pelvic floor therapy to try and stretch the tissue (another thing I'll cover in the future). Finally I had a surgery to remove some of the scar tissue, and I was put on a different hormone in hopes it would not be quite so strong. It took a LONG time to heal but I finally did. However, the issue still remained until a YEAR later when I finally stopped hormones all together and my estrogen was able to come back.
The periods came back with a vengeance and I found myself super depressed - wondering If I would possibly be able to endure the pain. I was on so many medications and none were helping, so I decided to try medical cannabis. That experience is also a blog post all in itself, but CBD oil helped in such a huge way. It kept my pain to only the periods and minimized symptoms. It helped lessen the pain as well. I still needed to disconnect from the world to get through the flares, but I wasn't so bad I needed the hospital like before. Here's a picture of all the meds my CBD ended up replacing!
My husband and I began trying for a baby. I used test strips to pee on and test my ovulation so we could time things. Good news - I was ovulating. In those first months we had a lot on the go so it was very much a "if it happens, it happens". Our doctor felt confident that despite my age and the endo, the hormones had done their job and we'd have luck getting pregnant within a year. But hey, the year coming up? 2020. Oh yeah, that was fun. In May, to our total shock and surprise, we found out we were pregnant. I was floored.
I was happier than I'd ever been in my life and all the suffering seemed worth it. But right away the doctor started cautioning that my HCG levels were not rising as they should and seemed very low. A few more blood tests confirmed they started to drop. I was told the pregnancy was not viable, and I'd be having a miscarriage. At week 10 I miscarried. At first I was in so much shock the full pain of the event didn't even hit me. But as the days went on, it really did and I started seeing a therapist to help me cope. This was June. In August, we'd have another. The June one symptom wise was worse. I had to miscarry at home with no real medical help or intervention because of covid. The august one was a chemical miscarriage and felt and acted like a normal period. My miscarriages are experiences I will talk about in another blog in more detail.
I felt During all of this I was STILL doing a level of my "mermaid work" with most of it being creating content we monetized online to pay the business bills. We couldn't do gigs during covid. But it was a bit of a head trip trying to schedule these things and convincingly act like I was ok. In addition, my body was changing so much, I was developing some dysmorphia issues.
It felt ironic to me that I have spent my entire life taking care of and entertaining everyone else's kids, but I couldn't have any of my own. I am the oldest of 4 and all my siblings have already had children - some multiple. Pregnancy and birth announcements were flooding my social media. I was really becoming depressed. I felt hopeless. Finally, just yesterday, I was able to get my appointment with the doctor who has some training in excision and makes many of the decisions for endo patients.
After the tests results are back (it's gonna take the rest of the year cuz they gotta be timed on certain days of cycle and depend on hospital availability too), then we either have surgery or IVF. I'll be honest, I really don't think she's gonna give me surgery and now because of the change of tune I no longer know if it's the right choice either.
I previously told Sean I didn't want IVF. And I told her if it came to that we'd probably just go on the adoption/foster care list. But she did explain a consultation might show we need less intervention than we think. So I guess I'm open to the consult just to get the information. It's not covered by insurance. I joined some support groups and folks do think I should be able to get through a few items on my list that would help - at a reasonable cost.
IVF is insanely expensive (see image above) and typically takes several tries. It would also mean expensive medications not covered and tbh after 6 years on hormones I just don't know if I could honestly handle it. My last round of hormones ruined my life.
Plus, no one seems to care in the health community that this is more than just a fertility issue. That is pressing only because they wasted so much of my time. But I've spent 23 years of my life in horrific pain. I fear my monthly cycles cuz I have no idea how incapacitating it'll be. I miss important life events. I miss work. I would never take my own life but when I'm in that much pain it def seems like a way out. No one seems to care.
And now we come to this blog. After I get these tests out of the way, I will need to make some decisions based on the information that comes back from them. I think keeping a blog is going to help me process these intense decisions and emotions. I also hope that by doing a blog, it gives a bit of meaning to my pain. Maybe others will find my story helpful? Some of my tips could solve a problem for someone else. If anything, they won't feel alone. I get a lot of attention as a mermaid, so it makes sense to me to piggy back my causes on top to bring the issues to a new audience.
Infertility and the Mermaid
Raina is a professional mermaid who also experiences endometriosis and infertility. This blog documents her life with these issues while trying to maintain a performer lifestyle.