2020 Quick update

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.

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.

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.

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.

Kaiser Permanente can die in a fire.

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.

“You’re one of my challenging patients”

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.

Kaiser (and all HMOs) sucks.

I almost made it through the work day. I remained around a 5.5 on the pain scale for much of the day, with only Ponstel to take for pain relief (which doesn’t work AT ALL at the dosage I am given).

At 3:37pm, another wave of level 8 pain took me down at work. At that point, I still had no authorisation from my doc to refill the Norco…since last Thursday.
Pleas to my primary doc went unnoticed.

The advice nurse couldn’t reach anyone in that department. I was stuck in the teacher lounge with a heating pad, clutching my abdomen in pain, waiting to hear back from the advice nurse. She said, “If you don’t hear back by 5pm, call.”

I called at 4:45pm and was told that another doctor filed the script (for 10 pills), and that I should follow up with my GYN ASAP.

This is exactly the same thing that happened last month.

THEN, I’m told the GYN I have been trying to reach is not my primary GYN doctor! When did that happen? I have only ever been dealing with the one GYN.

There is a ray of sunshine in all of this – I have the best co-workers EVER!
My boss drove me to the pharmacy, while the school secretary drove my car home. The director dropped me off at home and picked up our secretary. THEN, my newly appointed assistant teacher dropped off my backpack, some soup, yoghurt and juice! I am SO thankful for these wonderful women!

Tomorrow is another day. I can hope again that the pain subsides.