Let’s start with a review:
My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.
My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.
I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.
In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.
Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.
Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.
On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.
On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.
Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.
So the ovarian cyst took a back seat to a new health condition; asthma.
I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.
The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.
My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…
In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”
Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.
For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).
So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.
What I got instead was really bad news; an endometrioma does not reabsorb or go away.
Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.
An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.
I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.
We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.
My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.
I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.
So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.