It might have been as long ago as last year when I first became annoyed by itchy bumps on my cheeks and jawline. They appeared to be acne, but very mild. Since puberty, I’ve always had really clear skin except for when I went a time wearing a lot of foundation, or just before/during my period. However, they’ve never been itchy before, so I threw my pillow cases in the wash and checked my bed for bugs. I asked my mom if she’d noticed anything – we sometimes do laundry together so I asked if she’d changed the soap. I even checked the couch at work where we rest during slow night-shifts. No evidence of any creatures.

I stopped using the bristle brush in the shower and began to just use washcloths on my face. But nothing I did seemed to alleviate the little itchy spots, and I just got used to them. I was frustrated that the nature of my skin seemed to have changed, but what could be done?

I have always had a fairly easy time losing (and gaining) weight. When I work at it, I can generally lose a pound or so a week until I get back to my preferred range. I often gain weight depending on my stress, level of activity, or whether I’m cycling through a binge period. However, I noticed that it became almost impossible to drop any weight, even when employing some extreme restriction. Again, I figured this was not a big deal – probably related to age, and I’d just have to make more time for exercise and get used to it.

Around eight months ago, I began to notice my periods had increased in intensity, adding maybe a day to my extremely consistent 4-5 day menstruation. I have always been delightfully regular, getting my period with the cycles of the moon, and being able to predict it down to a day or three. My period has been this way since I first got it at eight years old. I do use an app to record my cycles, more for my own interest than any need to monitor it. I began to notice I was clicking on the “Heavy” button more often than I used to.

Then I began bleeding in between periods. A bright red streak of blood mixed with an egg-white-like discharge, there almost every time I wiped. Accompanying this were intense cramps outside my period.

On June 12, I had an appointment with my Nurse Practitioner to discuss the bleeding. She recalled that I had told her when we first started working together that my period, though heavy, was always regular and caused me no issues. She performed a pap test and informed me that my cervix looked good but she could certainly feel swelling and said it was likely to be fibroids. She said she would send the test away and I was to get bloodwork done, including the cancer antigen test CA 125. This cost $30 which luckily my insurance reimbursed. She also sent a requisition for an ultrasound to be done in Orillia.

That appointment was for the 26^th of June. I was able to leave work early and get to Orillia in time. I wasn’t very familiar with the Orillia hospital but with help my girlfriend Kai and I got sorted out and I had the transvaginal ultrasound. It wasn’t too bad – I had a female tech – and we had a laugh about peeing the table while she prodded away. I knew she couldn’t tell me anything but I asked anyway. She did show me some of the pictures, but they were extremely small and I couldn’t discern anything.

I was at a staff meeting for the shelter the next week when the Nurse Practitioner called me with the results. She explained that while yes, I do have some fibroids, I also have complex cysts on both ovaries, which was likely causing the pain I was experiencing. My NP also explained that my CA 125 test came back elevated, but that wasn’t uncommon for someone my age, and the number (200) could be a result of a variety of things including where I was in my cycle. We discussed some options for addressing the issue, like hormonal birth control via an IUD. I wasn’t thrilled about the idea but wouldn’t have to make any decisions yet. The NP referred me to the gynecologist office of Dr Rheaulx and Dr Ingles, both women, in Orillia.

The appointment was set up for the 18^th of July, and I had a whirlwind couple weeks, including the Muskoka Novel Marathon. I had to bail on attending the Muskoka Yoga Festival because of my pain levels. It seemed that my pain was worsening quite rapidly, and I just kept thinking how grateful I was that I had benefits through work finally, because I would likely end up needing it. I also had sick time, which I decided to use for the shift after my gyno appointment in case it was bad news or the exam was triggering.

I went to meet Dr. Rheaulx, who explained to me that my two cysts were complex, which means they can’t really tell what’s going on or what type they are. Most common ovarian cysts are ‘functional’, consisting of corpus luteum or follicular cysts – these are a variant of a normal menstrual cycle and often go away on their own. Complex cysts contain either blood or tissue or other solid substance, and often need treatment. They are very rarely malignant. Mine measured in at 4cm on the left and 8cm on the right. After over 5cm is considered a large cyst.

Complex cysts can be the following:

• Dermoid cysts are made up of cells you had since before you were born. Your body uses these cells to produce dermal tissue so they may contain fat, skin, hair, or even teeth.
• Cystadenomas contain ovarian tissue with fluid or mucus.
• Endometriomas form when cells from your uterine lining grow outside of your uterus and in or on your ovaries.

It is very difficult to know which type of cyst you have without surgery or at least an MRI.

The doctor explained that due to the size, it’s very likely I will have to have surgery to remove the cysts, and we don’t know if they can do the simple laparoscopic surgery yet due to the complexity.

I explained that my NP had sent out a requisition for an MRI but it was booked for November.

The doctor did a pelvic exam and did a biopsy on my fibroid. She told me that the ultrasound had shown I have three fibroids, two in the endometrial lining and one outside it. She took a sample and told me she would call with the results. I asked her whether there was anything that would indicate malignancy and she stated the bright red blood in between periods was most concerning. I did more bloodwork while I was there.

On July 24^th, I was at the Burger Shoppe in Bracebridge in between meetings and I got a call from Dr. Rheaulx. I opened up a word document and wrote down what she said.

Here’s the note I made:

 

Biopsy – endometrial hyperplasia atypia

Precursor to cancer

Blood tests reassuring

 

Progesterone – megate 20mg daily up to 40mg

quite a significant dose – tells lining of uterus to stop growing

3 months, resample, then mild ongoing dose (iud, five years), can try to go off after maybe 2 years

Appetite increase, breast tenderness, acne

 

CYSTS? Bursting? Not particularly unstable – not hemorrhagic

Move up MRI –

Hysterectomy – you’re sure it’s gone – definitive – 6weeks recovery

 

So the diagnosis at the time was endometrial hyperplasic with atypia. This is when the uterine lining is especially thick. It isn’t cancer, but atypia means that the cells found were not the stable, healthy kind, but were precancerous. I asked the doctor why someone would choose a hysterectomy over the progesterone, and she explained that when someone wanted to be absolutely sure it was gone with no chance of reoccurrence, which can happen when treated medicinally. She did not recommend going this route at this time.

A few times, between the doctor and my NP, the issue of my fertility was raised. As a lesbian, it is not a simple matter for me to become pregnant, and I am politically opposed to having children in an unpredictable and worsening climate.  However, I had always imagined having a daughter who looked like me. It was becoming clear that this very well might be taken off the table as an option.

When I asked the doctor about my cysts, because the hyperplasia is related to the uterus and fibroids but not the cysts, I suspect she’d forgotten about them. She said that perhaps the progesterone would resolve them as well. She suggested I make a follow-up appointment with her office and bring my partner or a loved one to discuss options. We made the appointment for August 7^th.

A couple days later I got a call from the Orillia MRI office moving my appointment up from November to August 7^th as well, about five hours before my gyno appointment. I was hopeful that meant the doctor might have the MRI results in time for my afternoon appointment.

My work has been incredibly accommodating – I was able to leave about an hour early after a night shift on the morning of the 7^th and Kai drove me to the Orillia hospital yet again.

I found the MRI process absolutely fascinating. My least favourite part? Having to take out more than twenty piercings. Try as I might, I could not get my second nose ring out. I changed into the hospital gown and waited for the MRI tech to stick a pick in my arm for the gadolinium inject, a rare earth metal that creates contrast for the MRI to ‘see’ better. The tech asked me if I was on blood thinners because apparently I had a bit of a spurt. He said maybe it was just the valve being wonky. He brought a brick-sized magnet over to my face to check if my nose ring was magnetic, which is wasn’t. He let it pass.

I really liked the MRI, actually. I had some support beneath my legs and classical music playing quietly over headphones. Did I want an eye mask? Nope! Going into the machine feet first was like a snug hug. The only issue was the thing in my arm was pinching a bit. I practised deep breathing and listening to the whirring and clunking of the machine. The whole thing was about an hour but I felt it went by really quickly. At ten minutes left, the tech returned to inject the gadolinium, to which I had no reaction. Back inside I went for seven more minutes, and then I was free!

Kai and I killed the time in between appointments and then headed over to Dr Rheaulx and Dr Ingles office. It would be Dr Ingles I met that day. We asked if we could record the conversation because with medical language it’s sometimes difficult to remember properly. She was hesitant at first but acquiesced.

Dr Ingles explained that indeed the MRI results had come through, which was great. She explained some of the details – it appeared one cyst was smaller than previously thought, at 6cm instead of 8cm. She explained they still didn’t know whether the cysts were dermoid (don’t google it) or another type. The doctor explained they were referring me to the Barrie oncologists who specialize in gyno/cancer issues. Basically, what’s going on with me is too complex for the Orillia clinic. This wasn’t reassuring except that I felt everything had moved quickly and people were explaining things fairly well.

I had a few questions for the doctor, including whether I have high estrogen or progesterone – it’s the former. I asked if this had been caused by poor diet or alcohol, and she said no. They don’t know what causes it exactly but it’s not possible for me to have done it to myself. This was a huge relief to me as I’d recently gone back to eating meat and have been drinking red wine so I thought I’d done it. Of course healthy food and lifestyle choices matter, but getting some reassurance helped.

The doctor also explained it was very unlikely that this could be addressed in a way that would preserve my fertility.

When asked if she suspected it was cancer, she declined to answer, but stated, “It’s not not cancer.” Which is why I was referred, I supposed.

Upon inspection of the MRI results after leaving the clinic, I noted that it said my ‘urinary bladder is collapsed’ which explains all the peeing. This could be because a cyst is pressing against it. I also saw that there is ‘additional free fluid’ within the pelvis. I don’t know what this means as it wasn’t explained to me during the visit.

Finally, it says, “Complex bilateral adnexal masses. Considerations include bilateral tubo-ovarian abscesses/PID versus malignancy. The appearance is not compatible with ovarian dermoid or hemorrhagic follicles.” So probably not dermoid cysts after all. PID is pelvic inflammatory disease, usually caused by STIs. I’ve never had one and don’t align with other symptoms so it seems unlikely.

On August 9^th, I called my NP to request some kind of pain medication as my suffering had increased and the over-the-counter stuff wasn’t cutting through it. She wrote me a prescription for T3s which I picked up after work, and I made an appointment with her for August 14^th to follow-up with everything. She asked if the gynecologists had given me a prescription for antibiotics due to the fluid within my pelvis and I said no, I hadn’t realized there was a potential for infection. She inquired as to whether I had a fever, which I didn’t.

Later that same day, I received a call from the Barrie oncology office, setting up an appointment for August 19^th at 8:30am with Dr. Ball. She also asked if the Orillia clinic had set me up for a CT Scan, to which I replied no. She informed me they would be calling me to arrange that, and I can go ahead and meet with Dr. Ball before the CT Scan appointment if needed.

I’m tired and worn down from the pain and all the appointments. I have other things I’d rather be spending my time on. But overall I am well and moving forward as I’m meant to. There are many lessons to be learned from this experience, and some days I’m attuned to them and some days I can only accept.

 

Read on to Part 2