For years I had suffered with off and on pain always blaming it on my wheat and gluten allergy or something I ate or a stomach bug from living in Asia eating cross-contaminated foods. Eventually the pain got the best of me and I had to pursue the medical system, in China, with a translator in a city of 9 million people. I was terrified. I won’t go into details but I had every test you could imagine. With a translator at my side and multiple doctors - because who doesn’t want to know what is wrong with the foreigner in the next room?! For weeks I took taxi’s back and forth to the Wuhan hospital to do another test with a different group of doctors and a different translator each time. It was tiresome but I forged on to see if I could find answers. This was almost 15 years ago and in hindsight I wish I had researched different hospitals, but when in the hands of your translators, you go where they say is good to go and hope for the best.
There were times when I had exams in back corner rooms like closets with piles of papers and supplies around. Other times the exam room didn’t have a door and the exam table was covered in newspaper. Sometimes I had to remind the nurses to go clean an instrument before touching me. Candle flames were used to sterilize needles, rubber gloves were not mandatory and dim lit rooms were common. I’m not kidding friends. It was insane.
Then I had to trust the translator to get my opinions and feelings correct and translate exactly what the doctor was saying while having quite personal tests done. After multiple tests they decided I had Pelvic Inflammatory Disease (PID) and gave me antibiotics and magnetic therapy to which I had to sit in the hallways for hours at a time to receive these treatments. I had acupuncture which led to me passing out multiple times without notice, once while waiting in line for an x-ray a the crowded hospital. I tried herbs, Chinese medicine and whatever they threw my way because my pain was so intense. And it didn’t work. None of it. And so I plugged away and just accepted that I would have this pain and PID forever.
The time came for us to move and New Zealand was next on the list so off we went. What a relief to find an amazing doctor. She reviewed my medical history and found cause to send me to a gynecologist due to all the pain I’d been having. Severe cramping, pelvic pain-sharp and throbbing, diarrhea, painful sex, nausea, migraines, fatigue, bloating….the list goes on. The specialist decided right away that due to my past health history, surgery was needed to explore and most likely find Endometriosis. Endo-what? I immediately started research about Endo as well as surgery and I was now terrified for other reasons.
“Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other. Endometriosis can cause pain — sometimes severe — especially during menstrual periods. Fertility problems also may develop.” ~ Mayo Clinic
So, after years and years of suffering a surgery date was scheduled. This was my first time going under general anesthetic and I was scared. I remember waiting in the blue gown and booties with compression socks, starving and anxious. I can see Dale’s face as I turned and waved before I walked into the operating room, hoping that I would come out alive. A common fear, right? Waking up from that surgery was the worst thing I’ve ever experienced. I’ve never been in so much pain, so uncomfortable, so nauseous or disorientated. it was awful. I stayed one night in recovery, thank goodness but the morphine made me feel so insanely nuts that I couldn’t wait to get home. Getting into a wheelchair to get to the car was the worst and feeling so nauseous…the minute we got home I remember laying on the grass with my pillow over my tummy throwing up and crying due to the pain. Ugh. I got into bed and didn’t move, bloated from the gas they fill your stomach with so they can see things better and achy from all the stuff they pump through you in order to have surgery. Yes, I’m thankful for the medical system and what they can do, but that doesn’t mean it’s enjoyable, right?
Through laparoscopic surgery, they found it was Endometriosis. I had four entry points for the surgery so I had to take a few weeks to heal. They found scar tissue and lesions on my fallopian tubes, ovaries and outside my uterus and removed what they could. The surgeon explained “Sometimes more scar tissue will grow and sometimes it doesn’t come back. Sometimes it can grow and not cause pain and sometimes it will come back even worse. And infertility can be an issue but if you do get pregnant, that can relieve symptoms but not cure it. There isn’t any treatment other than removing the scar tissue via surgery, so hopefully it doesn’t come back.”
I didn’t want to do any sort of hormone replacement therapy or fertility treatment at the time so after I healed from surgery I just carried on life. I was able to stay home for two weeks to recover and take it easy and I researched ‘having babies with endo’ and ‘how to heal naturally’. I had been married over a decade without children and we had a really good life….so I came to peace about not having kids as I was scared to go through any sort of loss or failed pregnancy so it all got put on hold. We traveled, made plans to move back to China (I guess I forgot all about the healthcare system there) and then without notice,
Pregnant. Say what??! It was a total shock to us and a total change of plans. You can read about all that on another blog post if you’re curious about my reaction to the positive pregnancy test!)
I remember after I found out at five weeks that I was instantly worried and fearful. I started to have some twinges and pain and feared the worst already. They suspected maybe a tubal pregnancy so I was sent for an ultrasound to double check. Nope, all good…..so we moved forward and I came around and was eager to journey through pregnancy.
Yes, my pain went away while pregnant and for a couple years following. Then it came back with a vengeance. And it still does. Some months I’m totally fine and forget all about it. Other months the pain is so bad (like today where I’m writing this from bed with my heat pack) where I’m questioning the options laid before me. Another surgery. A hysterectomy. Hormone therapy. Diet change (anti-inflammatory diet). The list goes on. I’m hopeful I can deal with it awhile longer as I can’t imagine going through another surgery right now. So I wait. I listen to my body and rest when I need to and find support in other Endometriosis groups, friends and family.
It affects 1 in 10 women in their reproductive years, 30-50% of women experience infertility and it can take 3-11 years to diagnose. Around 2 million women in the UK alone have undiagnosed Endometriosis.
I share all this to BE a form of support, to FIND support and to bring light to this autoimmune disease. I suffered for along time, wondering what was wrong with me, hoping I would find answers. And now that I have answers and still have to deal with the symptoms and pain, it can be frustrating. So, I wanted to reach out and share this part of my health struggle in hopes it would speak to others going through the same thing. I’m no expert, but if you have questions or need support, please reach out and I’d be happy to chat!
Sometimes I forget that this disease lies deep within my body and then I’m reminded “Oh, maybe that’s why a feel so tired, or maybe that’s why my cramps are so bad this month! Or maybe that’s what’s causing this migraine or insane five-month-pregnant bloat.” Thank God for loose comfy shirts and stretchy jeans! And then I’m reminded how important it is to take care of my body. To eat better, to exercise when I can and to take it easy. It’s a process but I’m thankful for days like today where I can take it slow, focus on my body and be proactive in helping it heal.
I may have Endometriosis but I can’t let it get the best of me.