I Will Not Suffer In Silence

Hey all, just wanted to provide a quick update so I don’t forget. I’ll try to do a more detailed year-in-review in the next month.

I’ve been having a big uptick in pain since September. I hadn’t bled since March, and then spotted for a couple of days in September if I recall.

My contract ended at the end of September and I lost my health insurance, but my awesome primary care doctor (Fredian) wanted to see me anyway and said I could pay installments. She has to see me in order to justify authorizing a refill of Tylenol 3. So today I was able to see the doctor one-on-one in her small family practice. I was the only patient there and she the only doctor. We both had masks due to covid-19 still raging all around us (nearly every state right now has a HUGE spike in cases, bigger than it was back in March/April, because of the sheer volume of covidiots during this entire pandemic), and my doc took my temperature upon entering the building.

She gave me a urine test to rule out bladder infection. No infection, whew! She also tapped on my kidneys. No pain.

Then she did a pelvic exam, and that was excruciating. She says the whole region is still in constant spasm mode, which is consistent with my diagnoses of endometriosis and pelvic floor dysfunction. She recommended an ultrasound to rule out ovarian cysts. I have typically had my worst problem developing ovarian cysts in November. I don’t know what it is about November. She said there was no apparent infection and the cervix looked good, etc. I had to request a pediatric speculum, especially after the digit inspection left me in horrid pain already. Once the speculum exam was over, THEN I started feeling the spasms on the outside, and my lower front uterus was giving me gnawing sharp pains. I described it to my doc and I could tell she was a bit cringed about having caused me pain. She was as gentle as she could be, so I felt bad that she felt bad. She’s one of the best doctors I’ve ever had.

The last time I had in-depth sonograms and MRIs for the pelvic region was last year in Autumn 2019 when I revisited my surgeon (Dr. Giudice), who ruled out endometrial cancer at that time and said based on the images, she suspects the endometriosis has grown back and is likely especially thick in the pouch of douglas again (which also explains my lower back pain and constipation). So, when I get insurance again, I need to go for another round of diagnostics and prepare for the big surgery. But if I can make it to March 2021, then I will be declared officially in menopause, for not having had a regular period in a year.

My goal has always been to get to menopause and see if the endometriosis pain fizzles out. I know it is not a guarantee, but for some people it works. I’m not willing to do any more hormonal treatments due to unlivable side effects, nor am I willing to undergo GnRH treatments which cause bone density loss, when I am already experiencing that just by being a middle aged 10th generation Appalachian (i.e. really wonk genes).

So my options are pain management, pain management and more pain management… And possibly a full hysterectomy… none of that has changed.

I just have to keep going back every year for diagnostics, especially when I experience upticks in pain, to keep ruling out endometrial cancer or torquing cysts. That’s largely what this is all about. Ruling out scary stuff and getting to the finish line.

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.

After typing up my last journal entry, I went searching through my blog for mention of peri-menopause. I had enough entries on it over the last four years that I’d actually created a category for it. Totally forgot I did that.

August, 2012: noticed my period went from 25 day cycle to 28+ day cycle.

May, 2013: I had a period, then 11 days after it ended, another full period.
October, 2013: skipped period entirely.

January, 2014: my period went back to 25 day cycle.
May, 2014: period ended and then the next day started up again.

April, 2015: I started my period again after it had just ended.
May, 2015: diagnosed with fibroids. I started my period again after it had just ended.
September, 2015: bled for 12 straight days.

So…I have had up to five years to “enter peri-menopause gracefully”.
But in August, 2012, my world ended when I discovered my spouse cheating on me with the woman I babysat for. That threw my cycle and everything into hormonal whack. My world never fully recovered.

I spent over a year and a half in MAJOR depression and on psych meds.

Then I met someone new and began a relationship, which went through such HORRIBLY INTENSE bullshit that I am surprised I stayed with the person at all. It got pretty bad.
At the same time, my job went from bad to unbearable, and I finally left it in August, 2017, only to be picked up by a monumentally worse job. I’ve only been there for just under 3 months, and it feels like I’ve been there for as long as I was at the other dysfunctional job.

So there was no going gracefully into this, because I have been in a constant state of stress hormone release for the past five years.

On Friday, November 3, after another bad day at work, I came home and had a full scale emotional breakdown, complete with sobbing, screaming, hyperventilating, and rambling incoherently.
I haven’t been the same since Friday. I feel like I did when I just got out of the psych ward in 2012. Everything has me jumpy and ready to scream & jump out of my skin. I’ve been taking more of my anti-anxiety medication.

And the food cravings. Holy shit, the food cravings. It’s probably a combination of being stressed the fuck out and hormonal whack going on, but I have never eaten so much peanut butter in my life. Same with ice cream. I have to have ice cream EVERY DAY for like, the past two months.

I texted my Ma yesterday about it, since I read that daughters may likely follow their mothers in menopausal onset and symptoms. My Ma started peri-menopause when she was about 43 or 44 years old. She had really bad mood swings. I don’t recall her food cravings, so I asked. She said she ate A LOT of ice cream, and that it helped with her hot flashes.
I told her I’d had some night sweats back in March. but nothing since then.

Then of course, because I HAD to have mentioned it, I had hot flashes all last night, which made it difficult to sleep. It mostly affected my lower body from the waist down my legs to my feet. Burning hot. Dry hot. I wished for a cooling pad. If this keeps up, I will order cool gel pillows and pads.

It has been 16 months, or nearly a year and a half since my last blog entry. I became disillusioned with life with endometriosis.

Starting around March 2017, at the age of 45, my periods started becoming irregular.
I would stop bleeding, then a day or two later, start bleeding again for a few days.
Or I would bleed for eleven days in a row.

I skipped a period from April to May 2017, going 36 days. BUT I spent most of May with cramps above level 6 on the pain scale.

I had a new ultrasound in May 2017, but the GYN said everything looked good; my ovaries showed no cysts and my uterus looked smaller. However, several intramural fibroids and a subserosal fundal fibroid was noted. The GYN told me that it shouldn’t be causing the elevated pain and weird cycles I was experiencing, to which of course I called bullshit.

I skipped a period again between July and August 2017, going 44 days between periods.

August to September 2017 was 36 days, and I spent most of September with cramps above level 6 on the pain scale.

I had two periods in the month of October 2017, with most of the month yet again cramping.

I’m back to having roughly one good week a month without cramps.

I should also note that for about a month (from March to April?), I experienced serious night sweats and hot flashes. Though they abated, I know it was just a taste of what’s to come. Though they abated, my core body temp has been elevated, and I’ve been running more warm to actual HOT since Springtime.

Also since Springtime, I have been experiencing hormonal rage, the likes of which I have not experienced since I was a teenager. It’s the exact same ragey feelings I had when I was in my teen years, only now I’m not screaming at my loved ones in public. Though I have lost my shit several times at my partner, and had to apologise.
That said, I feel like I may snap at any second.

Since early 2017, I have been trying to find a talk therapist to no avail, because Kaiser outsourced all of their psychological treatment to an already inundated program. I even tried calling Gaylesta and local community psychiatry, but everyone was overwhelmed with people calling for help. This is because of the political crisis people in the United States have been experiencing since November 2016 when The Orange Troll was installed into the White House and began systematically rolling back civil rights for everyone and everything.

On September 16, 2017, I was t-boned, and my car totaled. This, on top of a year of dealing with an epileptic dog, a Troll in the White House, a former friend/housemate shitting all over me and then crying to other people about how mean I am when I begged her to repair the damage she’d done to the room she’d rented, and me ending 8 years at one employer, hoping to switch careers, only to be scooped up again by another even more dysfunctional employer in the same industry.
So I’ve been suffering anxiety/panic attacks the likes of which I have not seen since my mid-to-late twenties.

I have been on a thin edge of sanity for the entire year of 2017, and I think I have an idea of what is happening to me, along with all the above-mentioned life stress:

I’m that much closer to the end of my period, and hopefully the end of bedridden horrific bloody cramps.

HOWEVER, I’m gonna be honest here and say that I had it in my head that I would have this sort of magickal timeframe to start preparing for peri-menopause before it actually hit. You know, time for me to enroll in yoga class, meditation classes and a stress-management program…so I could go into peri-menopause gracefully.

My body took one look at that idea and threw its head back, laughing maniacally.

That moment last Spring when I thought to myself, “Hmmm, could the is be peri?” It was already too late. The hormones were already going sideways, plotting to take me down hard.
Nope, no mindful meditation and graceful for you, buttercup.
HIT THE FUCKING DECK!!!!

So, from here on out, this endometriosis blog is ALSO my peri-menopause blog. Because, you know, I STILL Will Not Suffer In Silence.

Peri-menopause and Menopause are just as taboo as Endometriosis. So I will still be here, tellin it like it is.

Oh, one last thing before I conclude this journal entry:
PERI-MENOPAUSAL CRAVINGS ARE A THING.

I have never eaten so much peanut butter IN MY LIFE.

Actual peanut butter. Reeses peanut butter cups. Ben & Jerry’s “Everything But The…” ice cream.
Peanut butter cookies.

Don’t ask why. I don’t know. This at least is the only thing about peri-menopause so far that has me giggling.

At this point, why do I bother continuing to go to the doctor, especially now that I’m stuck with Kaiser HMO insurance.

Firstly, let me tell you the difference between HMO and PPO insurance in the United States:
HMO (Health Maintenance Organization) is cheap-o basic health care coverage, with the main goal of being a preventative health care system. That is to say, they don’t want you to get sick. Patients must have a Primary Care Physician, who is in control of referring the patient to specialists as he/she sees fit.

PPO (Preferred Provider Organization) is pricey-yet-comprehensive health care coverage, with the selling point being to manage long-term illnesses and conditions. Patients can self-refer to specialists.

Now, here’s what’s going on with me:
Yesterday and today, I had debilitating fatigue.
Last night, my period started up again after I thought I was finished and was barely spotting. After intimacy last night, I noticed bright red spotting.
This morning, I woke to bright red flow.

I have a rapport with my boss, whose daughter also has endometriosis. When I told her what was going on, and that I’d be dashing off to an appointment after work, she told me that she remembered this happening to me before. I told her I did not recall, but I do have excellent record-keeping on my computer. We talked about whether I could be perimenopausal or not. More on this convo later.

So I called Kaiser to make an appointment.

The person I got on the phone told me she also has endometriosis, and immediately I rolled my eyes, because I knew what would happen next. She asked me if I’d tried hormonal treatments. I told her no, and she launched into the whole, “well, you know that hormonal suppression is one way to stop the pain…” So I told her I tried hormones and they made me suicidal, so I refused to try further hormonal experimentation. She then asked about Lupron. NO, I have not tried it. She then asked me if I’d considered hysterectomy. Yes, I have, and I have decided against it. She then had the audacity to ask me if I had been surgically diagnosed with endometriosis. YES, I HAVE. TWICE.

Here’s the thing. I’m trying to make a fucking appointment with a GYN TODAY. That’s all. Just do your job as customer service intake or whatever the hell your job is, and find me a fucking appointment.

This woman doesn’t have any right to be asking me these questions. The only questions she should be asking me are the ones on her fucking script, which are:

• When was the first day of your last period?
• Are you experiencing any pain and where?
• Are you experiencing nausea or vomiting?
• What have you taken for the pain today?
• Do you think you could be pregnant?

 
Based upon the answers I give, she enters the responses into her computer, and it tells her whether I am eligible for an appointment TODAY.

All these other questions, I know she’s only asking because 1) she has endometriosis 2) she is a nurse, so she thinks she knows better than I do about myself, so 3) she feels entitled to give me a what-for.

Here’s a tip: just because you have the same illness as me, bitch, doesn’t mean you get to tell me what is best for me.

No, I have not tried Lupron. No I have not opted for hysterectomy. Yes, I have been surgically diagnosed and don’t fucking patronize me when I tell you I’ve had two surgeries and you say “yes, but where they diagnostic?” What the hell kind of question is that? Yes, of fucking course they were diagnostic.

There is a rampant mentality among women with endometriosis: many of these women tell other women that if they are not surgically diagnosed, then they have no right to complain about the pain of endometriosis, because it might not be endo. It’s like a fucking sorority club: you don’t get to talk about your pain unless OFFICIALLY diagnosed with endo. Then POOF! You’re in the clique. You get full title to wail and gnash your teeth about your pain, AND BE BELIEVED by the endo sister community. That is some serious bullshit right there.

I remember being belittled like that. I knew I had Endo, but I still had to fight for 11 years to get it proven surgically. Now that I’m diagnosed, I have to always be ready to show my fucking papers whenever the medical community or SOME women with endo ask me if I REALLY have endo. YES BITCHES, I DO.

And you’d think my bad experience would have ended there – that was just the nurse line to get an appointment for today. Oh no, it got worse.

My assigned GYN is not in the office until Monday, so they just gave me the first available doctor for the time frame I could manage. When I got to my appointment, I was a little miffed that nobody told me that my gynecologist for today would be male. Apparently there is no communication between the intake nurse and the GYN on staff, or else he can’t be arsed to read the intake report before seeing his patients. He asked me the same questions. When I told him no I have not had Lupron, he said “Why not?” in a patronizing voice. I told him with pursed lips, “because it’s my decision”.
I am tired of explaining to these motherfuckers the multitude of problems associated with going on Lupron.
Lupron is a male prostate cancer drug being used on women when doctors don’t know what the fuck else to do. We get bone loss, we get deepening voices and hair on our chests and faces. We get worsening pain. We get permanent debilitating joint pain.
I am not going to be your fucking guinea pig to end up with even worse problems than I am already dealing with. And yet, these motherfuckers keep pushing the goddamn Lupron on us!

But no, all I tell this doctor is, “because it’s my decision”. You are lucky I spared your fucking head today, sir.

He thinks out loud: I could be perimenopausal. He might recommend an endometrial biopsy.
He opted to do a pelvic exam, which I granted. He told me I am not currently bleeding, which is a pile of shit. He pulled out the speculum and told me that there is barely any blood on it. I told him I have been bleeding bright red all day, so if he is unsure, he can wait…there’ll be more. He inserted his fingers and asked me where I felt any discomfort, pressure or outright pain. He described my bladder and I told him it was uncomfortable, bordering on painful. He then told me that he really doesn’t see a problem internally as far as endo goes, but the bladder sensitivity could be something else. I know what this means and NO, I DO NOT HAVE A URINARY TRACT INFECTION. I’ll bitch more about that in a minute.

When he was finished, it appeared as though he was wrapping up our little visit. Oh hell no.
I told him, “This is what I would like you to do. I would like a transvaginal ultrasound ordered.” He looked startled, and said, “ordered?” I replied, “given” as I pointed to myself still in stirrups.
He paused, then told me he was just about to go ahead with that, and he seemed miffed that I would demand something from him. Oh REALLY? I thought you were dismissing me like everyone else. HMO doctors are hateful little creatures.

During this whole visit, his minion kept coming into the room without warning, which invades my privacy as I lay there in stirrups. He sent her out to get the ultrasound equipment as I scrambled to cover myself back up again. She rushed back in and didn’t even close the door as they began setting up for the ultrasound. I stared at her and then finally said, “Close the door.” Both she and the doctor looked at me, then the doctor gave her an impatient look and repeated for her to close the door.
At this point, I was about to lose my shit and set these people on fire.
But I needed answers, so I allowed the ultrasound to begin.

He had a look at my right ovary, which showed a very large black hole. I asked him what it is. “It measures half an inch”, he said. That’s about 1.5cm.

I then told him that I have a history of endometriomas. He replied that it looks like just a follicle to him, but he will mark it. Good. You do that.

At the end of the ultrasound, he reiterated that he does not think anything is wrong “other than normal cramps, not endometriosis pain”.

At this point I could no longer hold back my judgmental glare.
I am surgically diagnosed with endometriosis, and you are telling me that I don’t have endometriosis pain, just normal cramps? WHAT. THE ACTUAL FUCK. IS WRONG. WITH YOU.

But it doesn’t end there.

He then asked me something I knew he was going to ask, because I have had this fucking question asked many times previous to my surgeries.

“Are you sure it’s not a UTI?”

I gave him The Teacher Look.

I told him evenly and firmly, “it’s not”, at which point he put his tail between his legs, and literally held up his palms to me to let me know that I got my point across. He then said he’s not very well versed in knowledge of endometriosis (OH REALLY), and he even went so far as to acknowledge that I might know more than he does on the subject, to which I openly replied, “I do.”

What I don’t have to tell you motherfucker, since you were not interested in reading my surgery reports, is that I have endometriosis on the bladder reflection, which means my bladder is easily irritated when you poke at it with your fingers or with the vaginal ultrasound wand.
So, you might want to check the fucking surgery report before asking me if I have a fucking UTI.

At this point, I was expecting him to ask me another common question:

“Have you ever had an STD?”
If he had asked me that question, I would have leapt up off of the table and murdered him outright.

Instead, he mentioned offhandedly something nearly as infuriating:
He said I should really consider hysterectomy, or pray that menopause does not give me worse problems than the endo already does, because I have refused hormonal treatments, Lupron, and hysterectomy…and opted to just stick with narcotic pain management, which is frowned upon.

TRANSLATION: YOU ARE AN ADDICT.

In general, I am really tired of doctors. I’d really like for that pain transference device to be invented, so I can show these asswipes A DAY IN THE LIFE OF A WOMAN WITH ENDOMETRIOSIS.
And when they are screaming in agony, or literally dying from this pain, I will tell them all of the things they have told me and my endo sisters throughout the years.

I really miss UCSF. I fucking hate Kaiser, I hate starting over, I hate HMOs. The whole reason I am stuck in Third World Healthcare again is because my excellent medical benefits went out the window when my ex-spouse cheated on me and divorced me for the whore.

Now, I have Kaiser through my workplace, which as I mentioned is HMO hell. The exam room I was in today was behind office desks at the back of the building, in what looks like used to be a closet. The furniture in there looked to be at least 25 years old, badly scratched up and in need of paint. Actually, that furniture reminds me of the office furniture aboard the USS Hornet… A WWII vessel.
I would say that the health care provided by Kaiser is roughly similar to WWII healthcare.

Have I mentioned that I miss UCSF?

When I got home, I remembered the convo I’d had with my boss earlier in the day, and so I scoured through my iCal and photos of my whiteboard calendar to see if I could find any easy reference to this in the last few years. I check out my calendar notes first, before going meticulously through my blog entries, because I don’t always know what keywords to look for at first. Looking at patterns in my cycle via the calendar gives faster insight for me, oftentimes.

I finally found it – it was just 11 months ago – my boss was right – this has happened before. In May of 2014, my period stopped and then a day later started up again. I went to Kaiser and got a same-day appointment (at the time, with a new GYN since I was new to Kaiser). A transvaginal ultrasound revealed a 4cm fluid-filled sac. I was in even more pain last year than what I’m going through this year, and of course I was… last year it was a 1.5 inch cyst. This year, it’s a half-inch cyst. Either way, it causes me to bleed outside of my usual cycle.

So I have my answer, and I have a pending complaint against one Dr. Hong Kim, and a further complaint against the Kaiser healthcare system for letting me fall between the cracks when my regularly appointed GYN is out of the office.

And as far as cysts go, all I can do is Wait And See.
Will it reabsorb? Or is it an endometrioma?

And then I’ll take it from there…by going to see Dr. Andrew Cook down in the South Bay. He doesn’t take insurance – it’s out-of-pocket. After all I’ve been through, I’m ready to go this route.

I went the entire month of October without a new menstrual cycle. The lengthening in time between my periods over the past year has really been interesting.

I got my period on September 30, and then it didn’t appear again until November 2.
And just like in September, where I had pain a week before my period, it happened again in October. I had moderate pain for one day and then no period until almost two weeks later.

Yesterday was moderate pain. Today was heavy pain. It just kept getting worse. Finally, after work, I broke down and took half a Vicoprofen because I was getting nauseated from the pain. It took about 45 minutes to kick in, and now I’m happily dissociated. I hit 7.5 on the pain scale today.
The blood started off dark brown, then turned to bright red, then tapered and hit a thick dark brown again. That coloration, combined with the nausea, makes me wonder if I’ve got another ovarian cyst. And of course, the intermittent pain I’ve experienced over the past two weeks is on the left side – the same damned ovary that was discovered tied to the back of my uterus twice during surgeries. The damned endo has likely tied up the ovary again.

I haven’t done too well in the past year with documenting my endo flares. I’ve had other things on my mind, like intense grief. But I’m FINALLY getting past it. Finally. You have no idea. I can feel it easing up. Soon, I will be back to paying attention to the endo and modulating treatments and diet accordingly.

My doctor said I could increase the gabapentin during pain flares, so starting today I began taking three gabapentin per day (100mg each) instead of the usual two. Unfortunately, it did not really help with pain relief. I consumed 1,400mg ibuprofen today before taking the vicoprofen, and I’ve had a heating pad on me several times today, even at work.

I’m down to my last two vicoprofen pills. I’m brand new on my school’s health care (Kaiser), so it will take awhile to see the necessary doctors to get a renewed prescription. :/

I wonder if Halloween season had anything to do with the increased pain. My sugar intake has been UP this past month! On the To Do list – cut sugar from the diet again.

So that’s yer update.

I’m not handling reality well at the moment. I didn’t even mention the pain flare on facebook until today, because I couldn’t convince myself that this is really happening – I’m ten days early – it’s a full menstrual cycle and I’m in Day 3 of it already.

Shit got real today at work, when I hit a 7 on the pain scale.

This is what the pain was like on the Allie Brosh pain scale:

My GYN office called me back today; they said it *could* be perimenopause, but to continue watching my cycle for the next 3 months before coming in for a consult. I’m to watch for obvious signs like night sweats and hot flashes on top of very early or very delayed periods.

I have taken a half a Tylenol 3 twice today, and I have ingested 1,200mg of Ibuprofen to try to manage the pain. But here’s the thing…

Ever since being prescribed Neurontin, I have started experimenting with forbidden foods, just to see how far the medical benefit goes. Do I remain pain-free for longer periods of time, despite regular caffeine intake? Do I still get immediate pain flares upon ingesting corn syrup?

I have not gone about this in a purely scientific way, mind you. I have been taking more mental notes than anything, really. But I thought it was time to tell you about it, and to start taking down notes.

Dairy – seems okay, whether during endo flare or not.
Caffeine – ok unless endo flare, then same old death
Chocolate – ok unless endo flare, then same old death
Corn Syrup products, including Pop – ok unless endo flare, then same old death
Alcohol – seems okay, whether during endo flare or not.

Today I had caffeine, chocolate and corn syrup (Sprite pop) while at work. I hit a 7 on the pain scale, when I normally top out at a 6 on the scale since being on Neurontin, so the message seems clear: continue to avoid the usual suspects during an endo flare.

Here’s hoping tomorrow (Day 4) will be mild, and I’ll definitely be eating better.

Today is Day 2 of the Very Early Cycle. By now I should be experiencing a very heavy flow, but by noon I was already tapering. I’ve been spotting most of the afternoon and evening, though I have been cramping up to a 5 on the scale for much of the day. Still have the low back pain, too. Lots of debris and at times brown blood. I have consumed 1,200mg Ibuprofen today.

I have placed a call to my GYN, and await her response.

In the meantime, I looked up “perimenopause”.

According to Mayo Clinic, “see your doctor if:

* Bleeding occurs between periods
* Periods regularly occur less than 21 days apart”

Well this is the first time it’s happened, so I guess I’m stuck waiting to see if my periods get any more crazy than they have been. Back in 2011, my period started showing up 3 days late from time to time. By August, 2012, I’d moved from a 25 to a 28+ day cycle.
Last month was 29 days. So to go from that to 19 days is a big deal, and makes me believe I’ve hit perimenopause.

Nothin’ I can do but sit back and keep watching it. If 2 more cycles go by like this, I’ll definitely want to get checked out by my GYN to make sure it’s nothing worse than perimenopause or endo behaviour.

I don’t know yet if this is related, but I have major restless leg issues going on tonight. I’ve eaten a banana and I have taken a calcium pill to no benefit as of yet.

I’m only at 19 days since the last onset of my cycle, and I woke up bleeding! WTF! I’m not supposed to be due for up to ten more days!

First my cycle lengthens from 25 days to 29ish days, and now I’m starting it at 19 days?
Is this the start of peri-menopause?

I had prior warning signs for the last few days, but I mistook it for just being too active on the dance floor. I took half a Tylenol 3 pill after going dancing on Friday, because the lower back and left hip were killing me. The low back pain was a sign of george, though.

The pelvic and low back pain, combined with right hip pain and mild nausea from said pains has led me to take another half Tylenol 3 pill today. I’ve also consumed 1,200mg of Ibuprofen today. The pain of everything has had me constant at about a 6.5 on the pain scale today.

Despite the pain, I still went out and got my hair cut, then met up with two friends I haven’t seen in several months, then did a bit of retail therapy before coming home and setting up this year’s AIDS Walk donation page (I organise a team for the walk every year). I have been hobbling quite a bit today – mostly due to the hip pain – but dammit, I still went and lived my life. I will call the doctor tomorrow about the hip, and I will call my surgeon about the early menstruation. Of course, I should probably read up on peri-menopause again, too. I don’t know if it’s too early for me – I’ll be 42 in September. My Ma entered peri-menopause around this age, so it’s not unheard of.

Tomorrow begins a week of tearing down classrooms and setting up for the Summer session. This past Friday, my head teacher and I successfully graduated 17 first- and second-graders. I made it through an entire school year without missing much work from endo, because I’ve been on Gabapentin. I have seen more money in my paycheck as a result, and have earned my worth with the management, who are finally considering me for a head teaching position. So, I’m still in pain, but I’m no longer averaging an 8 on the pain scale. I modulate the amount of Gabapentin I take during my cycle, so I’m getting 300mg a day instead of 200mg. This helps, but the side effect is that I forget everything. So long as I’m not taking 300mg every day anymore, it’s worth the side effect for now.

We’ll see how this week goes for me…
In the meantime, here’s a pic of my new ‘do!