I Will Not Suffer In Silence

I am absolutely aghast at myself that this blog went silent for that long. In my memory, I’d only just written another tiring entry about my endometriosis journey.

In 2 years, 2 months time, I have finished out my last year as a preschool teacher and finally quit the profession for the second time in my life.

I wasn’t even unemployed for a week when a recruiter scooped me up from LinkedIn and I wasted no time and energy to comply with a 48-hour turnaround time to meet all of their requirements for the gig. I have been employed as a contractor via an agency via a banking firm via the request of the DOJ ever since June 2018. I was able to go right back into office work just like that. I’m a fraud analyst, now, for $8 more per hour than I was making as a teacher.

In 2 years, 2 months time, my health deteriorated and in early 2018 I tore something in my right shoulder while doing stretch band exercises with one of my autistic students. Then I tore my gluteus medius while rocking that same student to sleep. By May 2018 I was walking with a cane because my hip sockets kept painfully locking up and I didn’t know why. An MRI by end of May confirmed the glute tear, while the primary doctor diagnosed the shoulder thing as bursitis from strain. Neither are healed to this day.

In 2 years, 2 months time, my relationship continued to go down the toilet as the law caught up with my partner on some shady shit she had been doing since before we got together, and she almost went to prison for it. In the last two years of our relationship, while complying with all of the court appearances and paying off the debt she owed, her behaviour deteriorated and her narcissistic abuse escalated. She drove out a housemate, vetoed any other housemates, and turned most of the neighbors in and around our home against me. As mentioned, my health deteriorated to the point where I was walking with a cane by May 2018. The last straw for our relationship was in August 2018 when I had been accosted on a ride home from work by a Lyft driver while in level 8 endometriosis pain, and was near hysterical. Once I got home, I asked my partner to please drive me to the ferry terminal to go pick up my car, and it was like pulling teeth because I had interrupted her schedule before work. On the way there, she got into a road rage incident with another driver, which caused me to react by saying I needed her to be the calm one after what I had been through, and she WENT OFF on me over it, screaming about the other driver and how I took their side and blah blah blah. In the almost four years we were together, everything was always worse for her so the attention would always be on her. If I had endo pain, she had back pain so bad she was bedridden too, and for days longer. If I was sick, well she said she had pneumonia and I had to care for her. It went like that constantly. So with the road rage being somehow worse than me being sexually accosted while in level 8 pain by a Lyft driver (yes I reported it twice and no they never got back to me), I called it quits. I broke up with her on August 21, 2018 and moved into the spare bedroom. She got fired from one job, quit another, and was in the process of getting fired from a third while I was making plans to leave my home of 13 years because she refused to leave. She escalated her silent treatments and trash-talking me to the neighbors who kept believing her stories even though I’d lived there for so long without ever having been the kind of monster she made me out to be. My TMJ returned by September 2018 from the stress of EVERYTHING, and I spent Yule 2018 a suicidal wreck, and started in earnest to look for a place to live in January 2019.

On January 31, I looked at a housemate situation in Berkeley with a gay couple, and sent off my info to their landlord. At last! I would be free! The next night, I made my favourite meal to celebrate; shrimp pasta alfredo. And this is where everything went sideways.

I spent that night and into the weekend in an allergic reaction and re-reaction tailspin, ending up in the emergency room for possible anaphylaxis. The ER staff gave me an I.V. of fluids and benadryl, gave me a week’s worth of prednisone, refilled my epipen prescription and sent me on my way, telling me to follow up with my allergist. That trip to the ER and allergist alone wiped out EVERYTHING I had to move out, PLUS a week’s worth of work, because I was too sick from the allergic reaction and the prednisone and benadryl doses to crawl out of bed. And I had no one to care for me. I broke up with my girlfriend, and she saw no reason why she should take care of someone who was just an estranged housemate. OH TRUST ME YOU WILL NEVER KNOW THE DEPTHS OF THE PSYCHOLOGICAL ABUSE FROM THAT PERSON.

After a few back and forths and two allergy panels with the allergist, it was ruled that I was not allergic to shellfish at all. I was in fact not allergic to anything other than dust and mold. It was therefore determined that I likely have Mast Cell Activation Syndrome, which I had never heard of until that point. I was put on a regimen of Zyrtec and Allegra once each once a day, then each twice a day, but I could not function or stay awake on any of that stuff, so by March, I quit taking it unless needed, which is actually risky to do with MCAS, but I have to work…there’s no one to take care of me.

The whole time all of this is going on… In 2 years, 2 months time… my periods went from monthly to every other to maybe every two months, but when I did get my period, it was the same pain as it ever was. My fibroids continued to multiply. My pain continued to make me miss work. I developed excruciating unexplained tailbone pain. I had been referred for physical therapy under my Kaiser doctor, but lost that health insurance when I started up as a contractor, and had to start all over again seeing doctors and specialists and whatnot.

I finally found people to move out with by April 2019. A club friend and her partner were on the brink of losing their home after their housemate left, but it was in a dangerous part of town that I did not feel comfortable in (hello we’re talking daily assaults and weekly gunfire), so we scrambled our resources and powered through several rental units before settling (and I mean settling) for a place over 20 miles away from where we had lived. The adjustment has been a bit rough but honestly what made it bearable is that my housemates have been REAL. They’re respectful and communicative and compassionate and accommodating. So I did it. I finally escaped the place where I had endured a nasty affair, divorce, suicidal attempts, horrible housemates and a dream romance turned narcissistic nightmare.

In 2 years, 2 months time, I had a cancer scare. In January 2019, with my new insurance, I was finally able to return to Dr. Giudice who had done my 2010 surgery, and she once again spotted something awry on a transvaginal ultrasound. This led to another MRI and a HORRIFIC saline sonogram (OMG flashing back just thinking about the torturous pain), all because my surgeon was concerned about endometrial cancer. When all the results came back, it turned out I have, on top of everything else, adenomyosis. BUT IT’S NOT CANCER! HAHAHAHAHA!!! WOOOO!!!!

So.. with everything I have been through in the last seven years, it’s no wonder I’m falling the fuck apart.

BUT WAIT! THERE’S MORE!!

As I continued to decline, nobody could figure out the debilitating hip socket pain. I was again referred to physical therapy but could not go because I’m working ten-hour days with a 2-hour commute and no paid time off because I’m a lowly contractor, and if I dare miss two weeks of work for a serious illness, they have no fucks to give and will shit-can me. It’s happened to three different co-workers in the time that I’ve been there.

So I’ve been trying to do prescribed exercises at work and at home and just power through each hour, each day, each week. I live up a flight of stairs and our laundry room is in constant use when I’m at work and not available by the time I get home, so the only time I have to do laundry is on the weekends at the laundrymat. Only I’m too exhausted by the time the weekend rolls around, and I want to sleep all weekend. When I DO finally have the energy and time to go to the laundrymat, I have so much accumulated by that point that I pull muscles hauling all these heavy bags to and fro.

By September 2019, my doctor, whom I must tell you I AM SO GLAD to have found again under the new insurance – it’s none other than Dr. Fredian whom I adored way back many years ago because she takes her patients seriously. So seriously in fact that she finally opened her own practice! So yeah, by September 2019 we were talking Fibromyalgia and Lupus as other conditions to rule out, based upon all of my symptoms and deteriorations. It had turned up in bloodwork that I have a severe vitamin D deficiency – we’re talking Rickets. The very very base minimum is 30 on the scale and I was at 12. After five weeks of taking 50,000iu, I had only climbed to 26. I switched from weekly to daily doses of vitamin D. It was also discovered that the swelling in my legs has progressed to the point of pitting edema. SO PAINFUL.

On December 12, I finally got to see a rheumatologist, and was prepared to be dealt a Lupus diagnosis, when after going over all of the bloodwork and my medical history, as well as the trigger point test for Fibro, she declared I did not have either Fibro or Lupus. GAAAAAHHHHHH. WHAT THEN.

Looking me over again, she did the trigger points again and then extended out my fingers, and nearly jumped back when my pinky finger kept going back. I told her it didn’t hurt, she could keep going. She asked if I could do that with my other fingers. ‘Oh yes’, I replied, and bent my thumb to my forearm. She said, ‘I think we’re on to something’, and asked me if I’d heard about Ehlers-Danlos Syndrome, or EDS. I asked her which was worse, Lupus or EDS, cuz I didn’t want the worse one.

And well, here we are. I’m staring down an Ehlers-Danlos Syndrome diagnosis. I have an appointment tomorrow afternoon with a cardiologist to get an echocardiogram to check in on that heart murmur I’ve had since childhood. From there I will see about getting genetic testing and see if we can nail down WHICH FORM of EDS I have, in order to form an attack plan.

And then there’s Endometriosis. The entire point of this whole blog over most of my life. All my life I’ve waited to go through menopause naturally because I instinctively knew that the Luprons and the IUDs and the Hormonal treatments and the Hysterectomy would do more harm than good, and now I have EDS to back me up in that strong gut feeling. But it’s bittersweet, because my whole goal was to get to menopause, to see if the pain fizzled out on its own, and now that I’m nearly here, the fates are all laughing at me. I won’t enter my silver years free of endo to age gracefully as I naively held onto in the back of my head. My period may end, and I know it’s no guarantee of being pain free from endo, but worse yet is the pain that awaits with EDS. I didn’t want this. I don’t want this. I don’t know how to survive this. I’m tired. I’m so tired.

I will fight until I can fight no more.

Until then, I’m hanging in there, I tell me I love me, and I love you, my endo family.

I saw the physical therapist on October 29th. I woke up in level 9 pain that day, and took the day off of work.

I petitioned for and received a Norco refill on November 21st.

I saw the physical therapist again on November 25, after having been bedridden all weekend. We talked about the exercises I had been doing at home. I told the therapist that it actually made the pain worse, even between cycles.
She replied that I was the second patient of hers that week to say that the exercises made my pain worse. She then said, “You’re one of my challenging patients”.

I sighed and told her I hear that all the time from doctors.

She suggested that we try something else; a dilator. Now, the cramping and bleeding had subsided, but after an internal exam, external exam, and dilator use, it set off a bees nest of pain, and some bleeding resurfaced.

This was my first time using a dilator. To me, it looks like an ugly plastic dildo. It comes in various sizes – I was started out on level 2, which is bigger than a super sharpie marker if that helps for reference. I don’t know the actual sizing, yet.

I was then told to try a crystal wand, and that I could buy one on amazon.com. I still haven’t bought it. I remain intimidated by the thing. Basically, you insert just a little bit of it and hold it in place until your pelvic muscles relax around it. Then you slowly turn it, and let it sit again until your pelvic muscles relax around it. Lather, rinse, repeat.

I call it a torture device. I’m terrified of the thing. I’m not strong enough emotionally for this device just yet.

Okay this is driving me nuts. I am constantly behind at updating about my condition, and it’s only hurting ME when I cannot track things in a timely fashion!

I have been in a relationship for seven months, so the whole “new relationship energy” should have died down a bit in order for me to get back to taking care of my blogging and whatnot…but it hasn’t died down. I mean, it’s good that the energy hasn’t died down, but I need to FOCUS! lol

Back in August, my doctor got back to me and reluctantly told me to stop taking 600mg/day of Gabapentin because of the side effects I was getting. So I went down to 500mg/day and stayed there until I felt comfortable increasing, again.

It wasn’t until October that I felt comfortable, so I increased to 600mg/day again. I’ve stayed at that dose for 13 days, though after this latest round of endo pain, I’m ready to continue increasing dosage!
Then again…I did have a terrible migraine today, which made me seriously light sensitive and nauseous.
One of the side effects of increasing Gabapentin last time was a bad headache, so I will wait at least another day before continuing the dosage increase.

This month, I finally began seeing a physical therapist for the latest diagnosis: Pelvic Floor Dysfunction. I received this diagnosis back on August 7th from a doctor who refers out to physical therapy. I was told that this diagnosis is NOT to replace Endometriosis or Dyspareunia. I was told I ALSO have Pelvic Floor Dysfunction ON TOP of the other two diagnoses. This is why I came home and sobbed back on August 7th.

Going to the physical therapist only confirmed what the referral doctor suspected. The first appointment was on October 1st. I told my story to Dr. Hale. She wanted to know as much detail as possible about my pain and cycles, what worked and what didn’t, what surgeries I’ve had, what meds… everything going back to age 14.
Afterwards, she said based upon my case history, and knowing I was so close to my next cycle, she would not perform an internal exam. Instead, I was hooked up to a biofeedback machine (with electrodes attached to my pelvic area and labia) and was instructed to bear down, then relax several times. It was very hard to relax the region at all, and it showed on the monitor. Tensing my muscles set off mild cramps, but I was able to get home without dying. The next day, george showed up.

For the second physical therapy appointment on October 17, my girlfriend drove me, as I was unsure about the amount of work to be done.
This time, an internal exam was done, but very lightly, as Dr. Hale could tell how intensely tight my pelvic region is. She winced several times and said she felt very bad for me. At first, I wanted to say, “Oh, it’s not that bad”, but I held back. She’s the doctor – she knows this is bad news. Me? I’ve just developed ways to cope with it all these years, and this is SO FAR FROM BEARABLE PAIN. So very far. Dr. Hale assured me of that.
Despite the lightness of her internal examination, I cried out in pain a few times. Again, I felt like a wuss for doing so, and was reminded that I am in no way a wuss, that my condition is severe! She told me, “You and I are going to be friends for a long while.”

I came away from that appointment with a directive to NEVER cross my legs again; something that is SO DIFFICULT to break!
I was also told that I must NOT sit like a lady anymore. I have to sit with my knees far apart, and I have to sit my pelvic area downwards, bearing down. This means I have to sit up straight.

I must also do exercises a few times a day for a couple of minutes each time.

So. My third physical therapy appointment is going to be this Wednesday. Unfortunately, most of the pain from my current flare will be tapering off by that point. She had wanted to catch me in a pain flare. But I cannot get in to see her any sooner due to work obligations already in place.

The goal of physical therapy is to retrain the pelvic floor and hopefully also end up mitigating the pain of endometriosis, and cease the pain of dyspareunia.

We shall see what happens.

On the medication front, I have hopefully ended the battle this month with Kaiser doctors refusing to refill more than 15 pills of Norco at a time for me. After going round and round between multiple doctors, I was finally granted 30 pills at the beginning of October’s pain flare.

I have 14 and a half left as of tonight. This will definitely see me through this pain flare and November’s. So the next medication battle isn’t until end of November so I’m prepared for December.