I Will Not Suffer In Silence

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

Back on August 18, I discussed my pain management doc having me increase the Gabapentin by 100mg every three days.

As of today, I have increased to 600mg per day. Late this morning, I noticed again the shakiness in my hands, and after the second dose of 200mg this afternoon, I got REALLY anxious, hyper, heart-racing, wide-eyed, eyeballs twitchy (nystagmus), and unable to focus on a conversation. I also noticed my thumbs twitch intermittently while at rest in my lap.

Following the afternoon dose and then again after the evening dose, I noticed a low-grade headache, with occasional spikes of pain going down both sides of my temples.

After my evening dose, I again got REALLY anxious, hyper, heart-racing (87 bpm, which for me is high), wide-eyed, eyeballs twitchy (nystagmus), and unable to focus on a conversation.

I am at this point a bit nervous, and have emailed my list of side effects to my pain management doctor.

Because I am special, I had TWO endo flares in June.
But because I am hard core, I spent the day at the Pride Parade, and at my friend’s dance party on Day 3 of the pain (June 27).
I was drugged up all day, of course, and I didn’t dance – I sat and watched people, instead.

Me and my girlfriend.

SF Pride Parade.

The crowd at SF Pride.

I didn’t suffer again until July 21, OF COURSE 3 days before I had to get on a plane to visit family.
I had tried to refill the Norco a week earlier via the web, but it never got approved by the doctor. I kept calling to check on the status, and the pharmacy said they’d send another request, but there was nothing. So a day before I had to get on the plane, I reached 8 on the pain scale, and I got an emergency appointment with any available doctor. Well, I ended up with a nurse practitioner instead! And she refused to fill my script, and sat there arguing with me about it! Finally, she said she’d give me a few pills to tide me over until I heard back from my GYN, and she stormed out of the room, slamming the door.

My girlfriend was right there with me when it happened. I looked at her, mouth agape, and just started crying.
I am not a drug seeker, goddammit!! I am in a lot of pain!!!

I spent another two days in pain after landing in Michigan to see family, but at least I had enough pain meds to tide me through.

Me and my Ma.

Me and my chosen sister.

I recovered as I always do.
When I returned from my trip home, I had an appointment with a pain management doctor. I was expecting to be introduced to the different types of physical therapy type pain management they had to offer me.
Instead, I was told that before I can get to that stage, the doctor had to interview me. She wanted to know my life story with endo, so I told her. Then she said she needed to do a pelvic exam.
I was not ready emotionally for this, and told her so. She apologised and said that it is necessary for her to make her final decisions as to what care I need. She promised she would not use a speculum, or torture me.
I consented, but was not happy about it.
She did a simple pelvic with just her fingers. While in the stirrups, she had me lay my right leg to the side, then my left leg, while she kept her fingers inside of me. I yelped out in pain at the slightest movement of my legs to the side. She said that’s all she needed to assess, and told me we were done.

She then informed me of her opinion: I have Pelvic Floor Dysfunction.
“On exam, you have significant spasms in the muscles of your pelvic floor; this is commonly referred to as myofascial pain or pelvic floor dysfunction. Myofascial pain is typically worse with physical activity and after intercourse and/or bowel movements. When this has been a longstanding problem, changes happen in the nervous system that make the pain worse and even spread to other areas of the pelvis. The more the muscles spasm, the more pain you have; the more pain, the more the muscles contract and spasm so this becomes a cycle that can be difficult to break.”

We discussed the various types of treatment, which is the usual:

• NSAIDS
• Oral contraceptions
• DepoProvera
• Mirena IUD
• Lupron
• TENS unit
• Surgery

I vetoed all but NSAIDS and TENS unit.

We then discussed the Gabapentin. I was on 200mg/day, which made the doctor laugh robustly. I got offended, and told her that at 300mg/day, I experienced tremors in the hand and neck. But after discussing it for a bit, and knowing that I’ve been on the stuff for two years now, I decided to try increasing the dosage again. She wants me to increase by 100g every three days.

When I got home from the appointment, my girlfriend was waiting for me. I broke down crying, because I am frustrated that I have YET ANOTHER diagnosis of something awful.
But it makes sense now as to why surgery twice “failed” me.

So, over a week later, I’m now at 500mg/day, and I’ve started to experience very minor hand tremors. I will continue increasing dosage until it becomes uncomfortable emotionally for me to deal with.

Going back to george, though…
I felt good until August 15. That afternoon, I could feel my body breaking down, slowing down… every joint and muscle felt fatigued. But I had agreed to show up on the U.S.S. Hornet for a paranormal tour. I’m glad I did, and I got to lead a tour, something I’m becoming more comfortable with over time.

But by the time the tour was over, my muscles and joints, especially in the legs, felt strained. I had wanted to go out dancing after the paranormal tour, but I just couldn’t do it.

I realised my body had entered yet another pain flare.
The next morning, I was expected to be on the Hornet again for Security. When I woke up, I tried to ignore the pain. Sheer stubbornness got me dressed, fed and out the door, and to the ship. I took my pain medication first thing in the morning, and at mid-morning, and again right before I had to leave, but the pain STILL managed to take me down right before the end of my shift.

I made it home and crawled into bed. I remained bedridden for over 24 hours.

What pisses me off to tears is another beautiful, warm, sunny day was ruined by pain. I could count how many beautiful days I lose each year to this hellish pain, but it would be too depressing to stomach. What made me cry even more is that my girlfriend was staying with me that weekend, and I felt cheated out of happy fun hangout time with her. Though I have to say, she is the best girlfriend ever – she made meals for me, did some dishes, fed my cat, warmed my heating pads, and stayed by my side despite me being in states of listlessness or whimpering in pain or emoting anger at being in pain. I offered for her to go do stuff, hang out with people locally, etc. But she said she WANTS to be right here, by my side. I feel so lucky.

On August 17, after my girlfriend left back for her home, I developed a nasty migraine which lasted for hours. I put an ice pack on my head, it was so bad, and I finally just went to bed.

Woke up this morning, not feeling the greatest, but I had to go to work.
I was at a 6.5 to 7 on the pain scale all day, and just before it was time to go home, I spiked up to over an 8 on the pain scale.

On the way home, I fumbled around for some Norco, and found out I only had one pill left!!! So I called the Kaiser pharmacy, and was told that the doctor STILL has not approved the refill. The pharmacy said they would send another request. When I got home, I emailed my doc as well. Now I just have to hope that the last pill I took is all that I really need, and that the pain flare will come to an end tonight. Until then, I’m back to bed rest. The Norco kicked in, and I slept for three hours.

When I woke up, I thought it was time to go to work. It was only 9:13pm.

Being on 500mg/day of Gabapentin so far is NOT helping me with the pain.
I have a pending appointment with physical therapy, and I will be getting a TENS unit in the near future.

Now I must try to go back to sleep for the night…

I had a moment of panic in the bathroom today at work, when I discovered I’d started bleeding heavier than yesterday.

My period was supposed to be done last Sunday, but I started spotting bright red again yesterday.

Today, the blood was dark brown with debris – the so-called ‘coffee ground’ blood. At this point, I finally acknowledged consciously that something is wrong. I suspected once again that I’m dealing with an ovarian cyst. This is something that, in the past few months, I’ve given brief attention to, but pushed it out of my head. Today, I was forced to acknowledge it as fact.

So I looked back in time and realised that this endometrioma or cyst has been in the works for the past six months – since probably November, 2013.

Nov. 4, 2013: 5 waves of intense pain – 7 on the pain scale. Nausea with evening pain flare. Took half a vicoprofen.

Dec. 1, 2013: Nausea, extreme fatigue, shakey legs. Mild to moderate pain. Dark brown flow, turning to red.

Dec. 29, 2013: Bedridden. Puked from pain. 8.5 on pain scale.

Jan. 21, 2014: Moderate uterine and ovarian pain.

Jan. 22, 2014: Moderate bleeding and cramps. Severely fatigued all day, w/ fatigue lasting through Jan. 24.

Feb. 16, 2014: Debilitating pain. Did not note whether mostly ovarian or low back. Bedridden for part of the day on the 17th.

On May 2, 2014 the pain ebbed and flowed. I felt better after work, but then on the way home from hanging with friends, I was crying from the pain, which was mostly on the left side, radiating down my left leg.

May 3: intermittent moderate pain, especially in the lower back.

May 4: Low back pain mainly, but also stabbing on both the left and right side ovaries. The bleeding was subsiding, so I thought I was done with my cycle. That night, the pain cranked up to a 7.5 on the pain scale, and I laid on the floor on my back, crying, while my S.O. looked on helplessly.

May 5: pain and bleeding subsiding.

May 6: my entire back was locking up at the end of the work day. Then shooting pains down side of left leg, then right leg, then pelvic. I started bleeding bright red again.

May 7: ‘coffee ground’ discharge – a mixture of new and old blood, so much that I thought I started my period again. As the day wore on, I got more locked up in the pelvic and low back region again. I had to take 600mg Advil, then half a Norco, by 12pm.

My S.O. convinced me to see a GYN TODAY, so I called and got an appointment.

At the doctor’s office, I got a transvaginal ultrasound done (I’m a serious veteran of that wand, now). This ultrasound revealed a 4cm fluid-filled sac on my left ovary. The GYN also noticed a dark spot at back of my uterus; she said it could be the left ovary attached at back of uterus. I had her look at my previous surgery reports. She thinks it is most likely adhesions pulling the left ovary to back of uterus once again, and that I have either a large cyst or an endometrioma on the left ovary.
However, she urged me to go to ER for a doppler ultrasound and a uterine biopsy, because she is concerned about torsion, which can be dangerous, and she is concerned that the cyst is 4cm in size, which is the threshold where doctors get freaked out about cancer.

However, I am going to wait on it, based upon previous experience w/ cysts and endometriomas.
(See http://www.livingwithendometriosis.org/steph/2008/11/status-on-ovarian-cyst/
and
http://www.livingwithendometriosis.org/steph/category/ovarian-cysts/)

I also told the doctor I’m not comfortable going to E.R. because of an incident once where I went to the E.R. and instead of listening to me and reading my surgery reports, and just making me comfortable with an IV of drugs, they made me wait the pain out, then forced a pelvic exam, stirring up the bees nest again.

Today’s GYN doctor said that as a patient, I have the right to refuse a pelvic exam and ask only for the doppler ultrasound. She says I can request that first and then opt to have a pelvic afterwards, if something significant is found on ultrasound.

Just to make her stop trying to sway me, I did promise the GYN that if the pain gets any worse, I will go to the E.R. and request the doppler ultrasound.

I am feeling very defeated today at today’s news.

Not a day goes by where I don’t curse myself for not sticking to a caffeine-free and sugar-free diet since my last surgery in 2010. I have been able to successfully cut out red meat and pork, but the other two are just too much to ask for, apparently.
I also know that I cannot blame my diet alone on my pain. I know full well that I have abnormalities on chromosomes 1, 7, 9 and 12, and that endometriosis has been with me since I was created. I know this. I know that diet alone is not going to stop the pain. So I need to have a happy medium – not feel guilty about ingesting caffeine and sugar, but not going hog-wild with the two, either.

But cysts and endometriomas will still happen to me. It’s the nature of endometriosis in general, and specifically the nature of how endo affects MY body.

I’m just tired. I’ve been battling this goddamned illness for 29 YEARS.
I’ve had two surgeries. I don’t want any more surgeries. I know of women who have had over 20 surgeries and they’re STILL not any better. In fact, some are worse off! So I don’t want any further surgery. I just want to try to make it to and through menopause, and see if that burns the disease out.

But dear gods, I am so, so tired.

George showed up on August 31, and departed by September 5.
The heaviest, most painful days were September 1 and 2, and I’m SO lucky that I had September 2 off of work (Labor Day), otherwise my life would have really sucked.

I wonder if my period was more painful because I’ve been drinking more alcohol lately. I’ve been drinking more because I’m chronically depressed in the wake of what’s happened to me in the past year. I’m still not over the idea that my husband would be the type of person to have an affair for the better part of 2012 without my knowledge until about 3 months into the affair, and then it took me nearly 5 months to prove the damned affair was happening. He left me for her. He divorced me for her. How could this happen TO ME?!

Hence, drinking.

Is that why I’m in more physical pain?

Oh.

Time to do something about that.