My Endo Story

I'm going to attempt to tell my Endo story. "Attempt" because so much has gone on over the last 15 years, that I'm sure some details aren't as clear as others anymore. There are also things I've worked hard to forget. This isn't a competition; everyone's story is different, and everyone suffers in different ways. All I can offer you is what I've experienced myself. If you want to share your own story, feel free to use the comment section.

I was 15 when my symptoms started. My periods had been normal until then; sometimes it seems like a switch got flipped in my body and everything changed. At first, I felt fine all month until my period, which would make me nauseated and tired, and cause pain around my appendix. After two or three ER visits thinking I had appendicitis, my doctor put 1 and 1 together and told me I had "bad periods."

Eventually, maybe a few months to a year later, I started having midcycle pain as well as menstrual cycle pain. For two weeks a month, I lived on ibuprofen and gravol, and tried to live life as normally as possible. Somewhere during this time, I developed severe anxiety - I'd had too many random bouts on vomiting and lightheadedness, that it became a vicious cycle. I was either actually sick, or scared to death of being sick. To say this took a toll on my social life is the understatement of the century.

I was put on birth control, which did help a bit. My periods were shorter, and I was able to predict clearer when I would have my period. This helped me plan ahead; I knew which weeks were more likely to be bad weeks.

By the time I got to university, my menstrual cycles were so bad that I would be in bed for at least 3 or 4 days each month. Since I was trying hard to earn my degree, this complicated things. My (awesome) gynecologist recommended I try continuous birth control, and I started going 3 packs straight before having a period. Continuous birth control didn't make my periods any more bearable, but it was (and still is) great not having a period every month. This definitely was beneficial for me, because I was able to attend classes almost all the time, instead of missing classes each month.

I was 20 when I had my first surgery. They did not find any Endo the first time; they found Pelvic Congestion Syndrome, and I was advised to stop eating wheat products and anything else that might cause bloating. Cutting out wheat worked really well, but of course I didn't stick with it. The pain came back, worse than before, and I didn't give the wheat another thought - at least for a while. (Spoiler!)

I had my second surgery about 3 years after that. That time they did find Endo, in small amounts. It wasn't considered "severe," but it was definitely there. By this time, my symptoms were most of the time: lower back pain, lower right quadrant pain (extended into my thigh), nausea, constipation, diarrhea, fatigue. Life was getting harder.

I had my third surgery 3 years ago. That was a much larger, more invasive surgery. Among other things, I had my peritineum removed, which made for a very painful recovery. I had a violent allergic reaction to the oxycodone they gave me, so I had to survive on ibuprofen - which promptly destroyed my stomach lining. I can't tolerate ANY anti-inflammatories now, as they all give me allergic reactions.

Somewhere during this time, I quit my job. I had been working as an Early Childhood Educator at a local childcare centre, but the constant manual labour associated with this type of work was killing me. About a year before I quit, I started studying at night to be an Adult ESL instructor, which is what I do now. Changing professions was hard, and emotional, but it was for the best.

Following my third surgery, I felt AMAZING - for about 10 months. One day, at Wal-Mart, I suddenly felt a pain in my lower right quadrant that I hadn't felt since before the surgery. Yes, the Endo was back, and it was attacking me out of nowhere. I was so crushed, but there wasn't anything to be done about it, so I tried to go on.

About 4 months after my third surgery, my doctor determined I had a bad gluten intolerance. I don't have "celiac disease" (which is an autoimmune disease), but I must follow the same super-strict diet. She told me that this is very common with Endo sufferers; I'll post more about food intolerances later, but let me say that since going gluten-free, I've had an easier time with my digestive issues.

Around the same time as going gluten-free, a new symptom appeared: a stabbing, nightmarish pain around my tailbone and rectal nerves. It was like someone had stabbed me in the tush with a rusty, burning spike. A trip to the doctor resulted in a diagnoses of a cul-de-sac obliteration and rectovaginal Endo. Of course, these things don't always show up on ultrasounds, so the only "proof" I have of these diagnoses is what I feel, and what my doctor has told me.

So where am I now?

I work from home, which is the best possible thing in the world for an Endo sufferer (barring a magical cure, of course). If I'm having a rough day, at least I don't have to worry about commuting and making small talk with co-workers. My heart goes out to my Endo Sisters who don't have this option, because I know what a told Endo takes on professionals.

I'm not taking any medication for my Endo anymore, aside from my birth control. I'm working with my doctor, following the Endo diet, and trying to exercise regularly. I see my chiropractor and massage therapists as necessary. I dabble in aromatherapy. I listen to what my body tells me. I will post about all of those things in more detail, of course, but that's an overview of where things stand right now.

If you're wondering why I haven't mentioned other medications, it's because I haven't really taken any. In the past I've been given painkillers here and there, but I've found the side effects to be worse than the symptoms. (The exception to this would be Ponstan, which I use very, very sparingly). I prefer a more natural approach for myself, but that is absolutely NOT  judgment on anyone who uses prescribed medications to help their Endo. Everyone's journey is different, and we all have to do what works for us.

I'd love to hear your story! Post it in the comments or email me at myendowellness@yahoo.ca if you'd like me to post it for you.

With peace & joy,
Cher
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