EDS Followup and latest period

I took today off work to see my primary doctor and the rheumatologist.

The visit with my regular doctor (April Fredian) went great, and she filled out paperwork so that I can get a blue parking spot placard for my car. I did more bloodwork as we continue to chase and confirm autoimmune symptoms, and I have pending orders to do a sleep study because with all the swelling going on, I also now possibly have sleep apnea.

The visit with the rheumatologist (Felicia Yang) went poorly. She absolutely refused to properly examine me for anything else on the EDS score list, and wouldn’t look at my notes or the photos I had taken of my translucent skin, crepe paper skin, scars and stretch marks as backup.
She very lightly pushed on my fingers and declared I did not meet the Beighton Score, so I glared at her and pushed my thumb to my forearm and cocked back my pinky fingers.
She responded with asking me to touch the floor with my palms without bending my knees, and when I could not, she fucking shrugged and said she could diagnose me with, at the very least, hypermobile EDS but nothing more, and that having it doesn’t make me chronically ill.

She kept insisting that I looked great for my age and am doing well, despite me telling her I am in fact NOT doing well and that it is a struggle to get out of bed and VERY painful to get to and from work each day, and that the whole reason I was sent to her was to get to the bottom of my condition, and she’d already ruled out Fibromyalgia based SOLELY upon the “tender points” test, and ruled out Lupus based upon my bloodwork.
So I fired her and I will start all over again with a more seasoned and professional rheumatologist in a different office. **UPDATE** Scratch that, people on the EDS forums are saying rheumatologists are useless for diagnosing EDS and to see a geneticist. So I’ll work with my general doctor and my insurance to get scheduled with a geneticist.

Regarding the results of the echocardiogram as relates to my heart murmur: both the regular doctor and the rheumatologist explained that everyone has some degree of heart valve regurgitation, and that I fall within the normal bounds of what was observed. However, my regular doctor sees the bigger picture that the rheumatologist does not, and will send me for yearly echos to follow up on my heart, since my regular doctor cared to know that there’s a family history of heart issues on both sides of my family, and I still have unexplained edema going on.

In period / endometriosis news, I finally got my period on January 16 after a 52 day absence, and have been in level 7 or above pain ever since, with continual flooding out and birthing squid and stingray shapes since Friday.

Level 7 endometriosis pain and flooding hit while I was at my primary doctor’s office today, so I popped a Tylenol 3 and ate some food after the visit.
Level 8 endometriosis pain and continued flooding hit right after the rheumatologist visit, and I popped a second Tylenol 3 on the way home. Now I’m home and writing to you from the laptop in bed.

I told both my general doctor and the rheumatologist that my goal is to file for and be awarded federal disability, because I cannot go on commuting to and from work in the continually increasing levels of pain I have been in over the past year. I am fully aware that in the U.S., it now takes a disability lawyer and no less than five denials from the courts before one is awarded disability, so until that time, I will look for ‘work from home’ office work that will pay me enough to continue eeking out an existence. If it comes to the point where I’m facing homelessness over this shit, I’m outta here.

2 years and 2 months

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.

Food Cravings and Mental Breakdowns

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.

Life Update

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 have entered peri-menopause.

WOOOHOOOO!!!!!!!

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.

Lather, rinse, repeat

What can I say that hasn’t been said a million times on my personal blog over the past 12 years?

I’ve entered downtime. I’m in a pain flare.

My lower back has me walking hunched over because it’s locked up. I feel like a pillbug, folding up on myself. My lower uterus feels like it’s being scraped with a melon baller. My eyes hurt. My head hurts. My joints hurt.

Though here I sit, saying ‘Thank the gods’ it all happened this Tuesday, instead of next Tuesday, when I’m supposed to graduate 19 preschoolers.

But you know, it shouldn’t happen at all. I shouldn’t be in this much pain. I shouldn’t have to suffer like this, especially after two surgeries.
And how many of my endo sisters have had five surgeries? Ten surgeries? Twenty surgeries? More than that? With the same ZERO benefit?

And don’t EVEN get me started on other treatments and remedies. I have four printed out pages of treatments and remedies that didn’t stop the pain.

It shouldn’t be like this. How many more years will we go without a cure for Endometriosis? How many more generations still have to suffer like this?

Life update

It seems I write only every 2-5 months, now.

The reason is that I don’t feel I have anything new to add. I’m still in pain after 2 surgeries. I’m still dealing with complications of fibroids, and I’m still refusing to take hormonal or GnRH therapies. I’m still refusing to have a hysterectomy. And doctors are still telling me they can’t help me if I won’t continue to be their guinea pig.

Nothing has changed.

It’s depressing.

I’m waiting for menopause in a last ditch effort to see if my symptoms dissipate.
If symptoms do not abate with menopause, only then will I consent to a hysterectomy. Unless, of course, something life-threatening develops in the interim.

I am on Day 7 of my latest menstrual cycle. I made the mistake of drinking coffee on Saturday, which brought back the bleeding and cramping. Then it went away. Then this morning, I drank coffee again, and the pain and bleeding returned. So now I’m lecturing myself about cutting out coffee again. Ugh.

The fibroids LOOOVE coffee. It really gets their party going, I’ve noticed. So I need to stop drinking it again. This is going to be difficult, but it is necessary. Wish me luck.

While we’re on the topic of cutting out fun stuff from one’s diet, let me just state for the record that cutting down on or cutting out alcohol entirely does JACK SHIT for easing up your pain. I know, because as of this month, it has been a year and a half that I have abstained from all alcoholic drinks. And I’m still in just as much pain. So THAT dietary rule is bullshit. What you SHOULD know about that dietary rule is that drinking alcohol while in a pain flare, or near the start of your pain flare, will CAUSE your pain to spike horribly. That is why Experts tell you not to drink booze. But the way they phrase it is to cut it out entirely. What you need to do is just note your windows of opportunity, and try drinking outside of your pain flares. If that makes sense. I know some of you out there never get a respite from the pain, while others, like me, have windows of pain-free or low-pain time.

Feeling really down.

I am in a lot of pain. I hobbled into work this morning because I had a parent conference at 8am. I’m shocked I lasted the entire day…I certainly thought several times to just bail, but I gritted my teeth and hung in there.

On the bus ride home, I felt nauseous because of all of the motion. Just walking from one bus stop to the next across the street felt like a death march because of the pain and nausea.

I have 3 remaining parent conferences tomorrow. The one first thing in the morning has already been rescheduled twice, so I can’t cancel it.

I may just go to work long enough to do the conference, come home, and come back in the afternoon for the other two conferences. Not sure if I’ll be able to stay at work all day tomorrow.

What sucks is having to take a bus to and from work when in so much pain. I thought driving was bad? Try walking three blocks to the bus stop first thing in the morning when the pain is at its worst, then getting on a herky-jerky bus.

Kaiser may be the death of me.

Let’s recap:

In April, I was told by a substitute Kaiser doctor that he didn’t “think anything is wrong “other than normal cramps, not endometriosis pain”. He then asked me, “Are you sure it’s not a UTI?” before I lost my shit at him and demanded a transvaginal ultrasound because I had been dealing with new pain and symptoms.

I filed complaint with that doctor and days later talked to my regular GYN, who told me nothing definitive came of the transvaginal ultrasound. I told her I SAW a cyst or SOMETHING on the monitor, that there IS something there.
So she scheduled me for a doppler ultrasound on May 7.

On May 7, I SAW something on that ultrasound, too. I waited for 5 anxious days to receive word of what was going on with my body.
On May 12, I got an answer via email, in dismissive form, telling me “Your ultrasound shows 2 small fibroids in the uterus; both your ovaries are normal and there are no endometriomas noted.”

When I scheduled a phone consult with this doctor, she again was dismissive, even condescending towards me, telling me the fibroids are too small to be causing this much pain, and then she slammed a narcotic contract at me and said I had to go that route or else she had no choice but to cut off my medication.

Pissed off, I entered into the fucking narcotic contract, which now became an ‘Opaite Contract’, even though Norco and Tylenol 3 are not opiates. I was able to be put back on Tylenol 3, and I am able to renew my prescriptions through the mail again. I have no idea why it’s yes to Tylenol 3 and no to Norco through the mail. These people are morons.

At end of May and every month since, it has been the same old story: I have increased or lengthening pain. My period begins, it ends, and then a day later it starts back up again full blown for a day or three.
Just like I said before, This is what has been so unusual. This is what prompted me to ask for an ultrasound. This is what ended up being a new diagnosis of fibroids. The latest ultrasound results came back proving the increased pain I’ve been in, as well as lengthened pain flare episodes (results came back showing fibroids). This also proved why I have been eating more Norco than I normally would for the past few months.
And yet, I’m being totally fucked around by the medical establishment.

So from June until September, I dealt with My New Normal; Pain before period, period begins, horrible pain and lots of bleeding, period ends, period begins again with horrible pain, period ends.
At the end of September came a new terrifying development in all of this. I bled for 12 straight days, from September 23 until October 5.

Fed up with my local Kaiser doctors, I sought out a Kaiser doctor in SF who is either associated with UCSF (did residency there) or who specialises in Endometriosis or Fibroids.

10/7/2015  8:39 PM PDT
After reading your profile, I would like to choose you as my new GYN. I just finished bleeding for 12 days. In April 2015, after noticing increased pain and abnormal bleeding, I went to Kaiser. It wasn’t until 2 visits later, in May, that I was diagnosed with fibroids on top of already having endometriosis. I have had 2 surgeries for endo through UCSF (in 2007 and 2010), and I am still in pain. In 2014, I was sent to Kaiser pain management. They diagnosed me with pelvic floor dysfunction. Despite the fibroids diagnosis in May 2015, Dr. Shankar wanted to take me off of Norco for pain management, and said the fibroids were ‘very small’ and not likely causing my increased pain and bleeding. Now I’m on a pain contract and take Tylenol 3, because I hated Norco, anyway. 
I can’t take hormones. I won’t do essure or mirena. I would like an updated transvaginal ultrasound to check on the fibroids and whether the endometrioma(s) have returned. I am seeking your advice.

She wrote back 2 days later and scheduled me for the ultrasound, which I had done on October 16.

Once again, I was made to wait for the results. NINE DAYS before getting an answer, even after checking in asking for my results.

Back in May, the transvaginal ultrasound showed “some small” fibroids.

This updated ultrasound says “multiple small” fibroids.

The previous report says they are intramural fibroids.

This report says “intramural or submucosal” because according to Dr. Kendrick, they won’t know for certain unless they do a saline injection ultrasound or an MRI.

The report from May says there are some simple cysts on the right ovary, nothing to worry about.
The report from October says there is a 1.6×1.4×1.7cm cyst on the right ovary, “likely hemorrhagic”. For more info: http://radiopaedia.org/articles/haemorrhagic-ovarian-cyst , which says many hemorrhagic cysts resolve on their own within 8 weeks.

Given that my last menstrual cycle lasted 12 days, I have to give it another menstrual cycle to see if it will ease up.
That said, Dr. Kendrick told me by phone that if I also have fibroids in the uterine cavity, rather than embedded in the wall or poking out of the uterine wall, then I will have intense bleeding each month.

Also, on the report from May, it showed that I had a few simple cysts on the right ovary.
In the current report from October, it shows that I have a septated (divided) cyst on the right ovary, which is “likely hemorrhagic”.

This to me could be either an endometrioma, even though Dr. Kendrick said it’s not, or it could be a cancerous tumour. This is why Dr. Kendrick suggested I could do further tests:

– saline injected ultrasound
– MRI

to get more detail about the cyst and the fibroids.

Although Dr. Kendrick was not at all worried about cancer. She didn’t even want to mention it. She even said the ultrasound report shows a risk score of zero.
See also http://www.cancernetwork.com/ovarian-cancer/some-ovarian-tumors-can-be-safely-followed-ultrasound

To take care of fibroids that are in the uterine cavity, I can have a hysteroscopy and shave the fibroids off the uterine cavity.

If the fibroids are embedded in the wall, I’m fucked according to the doctor unless I:
– try Lupron
– get a hysterectomy
– go through menopause naturally

to stop growth, pain and bleeding of the fibroids.

I have been under tremendous stress at work and working long hours, so already a week has gone by since this news, but I am going to call my Kaiser plan and find out how much it is for saline vs. MRI ultrasound.

I am freaking out about ovarian cancer.

And once again, I’d like to state that I am the first to know when something has changed in my body. This process began at the beginning of this year. It has taken most of this year to get to the current news; septated cyst. A cyst which is dividing. Cell division. And I already have a cancer-like condition called Endometriosis, which is rogue cell growth.

I am in the right, here. I know there is something MORE abnormal than the existing mess going on in my body. The heinous crime is that the doctors don’t act on it as quickly as I notice it, and I lose time.

I’m afraid of losing too much time. I’m afraid of running out of time.

Anger is an energy

Time moves slowly at Kaiser Permanente.

5/21/2015 4:22 PM PDT
Hello Dr.Nguyen,

Days ago, my GYN said she would be in touch with you about a narcotic contract. I am a bit confused, but I think this means she is writing me off as to further refills from her department.

I have endometriosis with worsening symptoms. I requested an ultrasound, which discovered fibroids. This is a new development, and I believe is the source of my increased pain. However,my GYN is saying it is very minor.

I really need to find out who will continue filling my prescription to manage this pain. I am on my last Norco pills during this cycle, which has me home from work again, bedridden.

The next time this cycle is due to take me down is June 14, but I have been enduring midcycle cramping and bleeding since at least February, which is the whole reason why I requested the ultrasound in the first place. So it could be that I will need more Norco before June 14. I want to be prepared.

I await your prompt reply.

George arrived on May 20. I was off work as I mentioned, bedridden, on May 21.

And lo, in less than 24 hours, came a reply:

5/22/2015 12:19 PM PDT
Sorry to hear about your pain. I have emailed Dr Shankar and will follow up with you after I discuss with Dr Shankar. It would be a good idea to schedule follow up clinic visit with me anyways so we can discuss your medications for your pain, maybe sometime late next week (give me a chance to discuss with Dr Shankar plan of action for your chronic pelvic pain).

“Late next week”.
And I’m running out of pain medication, fast.

I returned to work on May 22 in level 7 pain. The pain continued to alternate between a 4 and a 7 on the pain scale throughout the weekend. Thankfully, I was off work for Memorial Day on May 25, because I spent the day in bed from continued pain, having to ration my medication.

Tuesday, May 26 found me completely pain-free. I was in a jovial mood all day. It had felt like I had endured a long, harsh winter, and that Spring had just sprung for me.

And then, the very next day, the cramping and bleeding returned. And it lasted for four days.
See, this is what I’ve been talking about. This is what has been so unusual. This is what prompted me to ask for an ultrasound. This is what ended up being a new diagnosis of fibroids. The latest ultrasound results came back proving the increased pain I’ve been in, as well as lengthened pain flare episodes (results came back showing fibroids). This also proved why I have been eating more Norco than I normally would for the past few months.

And yet, I’m being totally fucked around by the medical establishment, and denied my fucking medication.

Unfortunately, I was not able to score an appointment to see my primary doctor by May 28 or 29 as she had requested, and I completely ran out of pain medication, and suffered greatly as a result, because no one would fill a few pills for me to tide me through.

I got in to see the primary doc on June 1, when I again was pain-free.
There, I plead my case as to why I need medication over hormones and surgery. I also handed her a 4-page document on everything I’ve ever tried to manage endometriosis.

After begging Kaiser GYNs for 2 years to be put back on Tylenol 3 to manage the pain because I have side effects with Norco, and being denied, my primary doctor jumped at the opportunity to get me off of Norco and back onto Tylenol 3. She said it’s much more manageable to prescribe that one. Incredible. I can’t even.

And then, while I was still jaw-dropped over the pointless 2-year medication fight, the doctor said, “But I still need to put you on an opiate contract”.

Note that the language has changed from narcotic contract to opiate contract.

WHY, I asked. She said it’s still a controlled substance. But easier to deal with than Norco regarding red tape.

I looked over the wording of the contract, and then listened as my doctor rattled off the contents of the contract. The language is clear – I am a drug-seeker who has to be warned (twice) against getting combative with staff about meds, and who has to take regular pee tests to make sure I’m not taking any other opiates or narcotics, or illicit stuff. My doctor told me THREE TIMES how she had looked me up in the drug database to make sure I was not going to several doctors to get the same meds prescribed, and she DELIGHTED in scoring me on a risk assessment to be eligible for the medication contract (I scored a 2, whereas 4+ is denied a contract).

She told me that the pee tests are random and at any moment, I could be summoned away from work to have to do one, lest I get dropped from the contract. Interference with my life and career, much? Playing ball, much?

I took the contract home and pondered it before signing.
I read it to my partner.

I cried. I felt trampled on. I felt abused by the medical establishment once again. Forced into playing ball once again.

The very next day, on June 2, I experienced intermittent level 6 pain, and described it as adhesions pulling from the inside. This lasted two days.

On June 5, I reported for my first pee test after work, and was told it would be a $45 co-pay next time and from then on.

To pee in a cup.

I exclaimed, “No thank you!” and was referred back to my workplace, since my health care is through the workplace.

I checked in with my workplace, who said their hands are tied.

I emailed my doctor, asking why I signed an opiate contract when Tylenol 3 is a narcotic, and I informed her that I cannot afford routine urinalysis fees.

She replied the same day, surprisingly. She wrote, “Codeine is an opiate and contract is still needed. For chronic opioid therapy we do urine testing twice a year.”

So I don’t get out of the damned $45 fee, but at least it’s only twice a year.

I’m still puzzled by the narcotic vs. opiate thing.

But now I have 30 Tylenol 3.

Good thing, because beginning on June 11, I experienced crushing fatigue and full body joint pain. Cramping began on June 12 and has not let up since, even though I have not yet started my period. After four days of this pain growing stronger, today I gave in and began taking half pills of the Tylenol 3, on top of the 2,000mg of Ibuprofen I’ve been consuming for the past week.

On top of the medications, I’m still taking Probiotics, Evening Primrose Oil, Vitamin C, Iron, Magnesium (for restless leg syndrome, which plagues me ever since being on Gabapentin), cramp bark and other crap.

The pain today has been the worst in the past 5 days. I’ve been at a level 6 all day, with shooting pain from my lower back down my left outside leg, cramping into my left thigh.

I hate living this way.

Additional diagnosis and hot potato

After my last post, I waited until my regular GYN was back in the office, and called her to tell her what had happened, and that I had filed a complaint against the GYN I had to see in her absence. She apologised for his not understanding the situation. Whatever.

She then told me nothing definitive came of the transvaginal ultrasound. I told her I SAW a cyst or SOMETHING on the monitor, that there IS something there.

So she scheduled me for a doppler ultrasound on May 7.

When that appointment came around, I SAW something on that ultrasound, too. Now remember, I was sure it had to be a cyst, and I feared it was an endometrioma. But why were there multiple points of colour on the doppler ultrasound? That’s new to me.
So, when the techs left the room for a moment, I snapped a picture of it:

[technical difficulties, will try again soon]

I waited for 5 anxious days to receive word of what was going on with my body.

On May 12, I got an answer via email:

Hello,

Your ultrasound shows 2 small fibroids in the uterus; both your ovaries are normal and there are no endometriomas noted. Please see the report below for your reference.

PELVIC ULTRASOUND

** HISTORY **:
History of endometriosis an endometrioma.

** FINDINGS **:
Comparison: 06/09/2014.

Technique: Transabdominal and transvaginal images were obtained
in accordance with protocol.

UTERUS: The uterus is retroflexed, measuring 11.3 x 4.5 x 4 cm.
There is some heterogeneity of the myometrium with the appearance
some small intramural fibroids.
Fibroid #1: 1.5 cm, intramural myoma in the left posterior body
Fibroid #2: 2.1 cm, intramural myoma in the right anterior
uterine body
The endometrial echo complex is uniform in thickness and measures
1.1 cm in double layer sagittal thickness.

ADNEXA: The left ovary is normal in appearance measuring 3 x 1.9 x
1.4 cm. The right ovary measures 3.8 x 4.2 x 2.5 cm demonstrating
a few simple appearing cysts, considered to be within range of
physiologic. No suspicious adnexal lesions.

FLUID: A small amount of free fluid is present within the pelvis,
within the range of physiologic.

** IMPRESSION **:
No endometrioma is identified. A few small intramural fibroids are
seen. No suspicious adnexal lesions.

FIBROIDS?

Another fucking diagnosis?

Are you kidding me?

So now I’m up to four chronic pelvic pain diagnoses? Endometriosis, Dyspareunia, Pelvic Floor Dysfunction, and Fibroids? Oh that’s just fucking great.

So I did some research.

According to Mayo Clinic, “Some fibroids grow within the muscular uterine wall (intramural fibroids). If large enough, they can distort the shape of the uterus and cause prolonged, heavy periods, as well as pain and pressure.

“In women who have symptoms, the most common symptoms of uterine fibroids include:

  • Heavy menstrual bleeding (check)
  • Prolonged menstrual periods — seven days or more of menstrual bleeding (check)
  • Pelvic pressure or pain (check)
  • Frequent urination (check)
  • Difficulty emptying your bladder
  • Constipation (check)
  • Backache or leg pains (check)

 

Of course, most of the above are also symptoms of Endometriosis. But for me personally, the prolonged menstrual periods, frequent urination, and increased low back/leg pain were the triggers that told me something was not right.

According to another website, “Fibroids are uterine smooth muscle tumours each developed from a single muscle cell. It is estimated that more than 30% of women would have one or more fibroids after the age of 30 but are not common in younger age groups. Accordingly increasing age up to the menopause is considered as one of the risk factors for increased prevalence of fibroids together with family history, racial origin, obesity as well as nulliparity.

“There is a 3-fold increased risk of developing fibroids with similar first degree family history. Furthermore fibroids are more common, multiple and larger in Afro-Caribbean women compared to other ethnic groups. As well body habitat is considered to be a predisposing factor. Women who weigh > 70 kg are 3 times more likely to develop fibroids than women <50 kg heavy. "[Intramural fibroids] are fibroids located totally or maximally within the muscle wall itself and form the majority of diagnosed fibroids. They could be small or large, single or multiple. They are often associated with adenomyosis. It is reported that fibroids, adenomyosis and polyps could be found together and the presence of one would increase the chance to 80% of finding one of the other two." See also Brigham and Women’s Hospital article on fibroids.

Then I emailed my doctor:

Thank you for the update. I knew something was wrong.

I need to research fibroids further, as I’ve never had this issue before. What are your recommendations – is it the same as with endo?

I need your help with regards to medication refills until I can afford to take time off of work for surgery and recovery. Right now I live hand-to-mouth, so it is not an option to afford a surgery or the time off of work for recovery. The last time I had a pelvic laparoscopy, it took 5 weeks to recover.

The GYN did not respond for 2 days, so I arranged for a phone appointment. I got her email in the meantime, and was wholly pissed off by what I interpreted as a dismissive and condescending tone:

Your fibroids are very small and in general, fibroids are very benign. It is extremely rare for them to be cancerous. Regarding the pain medications, if you need something more often than what we would feel comfortable with, we would recommend that you go into a “narcotic contract” through your primary care physician and that way, it is streamlined and monitored. Without that, unfortunately, it becomes very hard for us to keep refilling the narcotics. I completely understand your social circumstances and so, this may be a better way of doing this so you can keep getting the pills but, in a controlled way.

When she phoned me, I informed her that nowhere did I ever panic that I might have cancer, and furthermore, I already live with a cancer-like condition called endometriosis, so I know how to do my research. She apologised.

Next, I laid into her about a “narcotic contract”, telling her I have had TWO pelvic laparoscopies for endometriosis, have tried hormone therapy TWICE, and that I am not far off from menopause, so could I PLEASE just be made comfortable with pain medication for my chronic pain condition, instead of being treated as a pill-seeker?

She refused to budge, saying Kaiser GYN dept does not normally prescribe narcotics or opiates long-term. I accused Kaiser of being on a mission of preventive care, rather than taking quality and humane care of chronically ill patients. She retorted that Kaiser gives chronically ill patients the best care and attention possible. She again suggested I try the following “therapies” instead of pain pills: Lupron, Depo Provera, Mirena IUD.

NO. I WILL NOT. Furthermore, I informed her that hormonal treatments are known to aggravate fibroid tumours. What part of no does she not understand?

She again stated that the fibroids are minor. She doesn’t hear me repeat that it’s not just fibroids – that I have Endometriosis, Dyspareunia and Pelvic Floor Dysfunction. That I’m in real pain with lengthening cycles of pain and bleeding.

She, like all doctors, has given up on me. Passed the buck. She told me she would speak to my primary care doctor about setting up a narcotic contract. And that was that. Another doctor has fired me for being chronically ill and unwilling to play ball.

And now I wait for the next round to fight.