I Will Not Suffer In Silence

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

We shall see what happens.

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

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

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.

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.

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…

Today I threw up from the pain. My period arrived yesterday after a 34-day hiatus.

My last post was May 7, where I was dumbfounded by an extension of my period, which was alarmingly odd. That pain and bleeding lasted until May 13. I then experienced days of no pain, days of some pain, off and on like that through to the end of the month. I thought my next period was due May 24, but that date came and went with no sign of george.

Then he arrived yesterday as I mentioned above. Obviously the endometrioma is wreaking havoc inside of me.

Yesterday and last night, I had moderate pain. It was manageable, though. This morning, as I was leaving the house for work, the pain suddenly shot up to a 7 on the pain scale. It happened right after I had to swerve and honk the car horn to avoid an asshole trying to run a stop sign. That minor adrenaline rush was all it took to set the pain in motion.
I had to turn around only a block from my home, drive back home, take some Tylenol 3 and put on a heating pad, and then try again to get to work. I was about 10 minutes late to work. I popped 800mg Ibuprofen and tried to go about my day, but the pain just kept getting worse throughout the day.

I took another half Tylenol 3 just before lunch time to no avail. I then popped 800mg more of Ibuprofen after lunch. I thought getting to 8 on the pain scale by lunch time was going to be my worst, but no… the pain got to 8.5 while I was in a head teacher meeting around 4pm, and was accompanied by a horrible headache. I tried to leave immediately after the meeting, but ran back inside the building to vomit. Yes, I vomited because the pain was so bad. I haven’t done that in a long time.

I got home and just like that, the headache subsided, as did the pain. I’m seriously exhausted from the trauma of it all, so I took a nap for an hour, only waking up because of the pressure on my bladder from all the buildup of menstrual fluid.

As soon as I used the bathroom, WOOSH the pain level shot up again and the headache returned. I just took a whole Tylenol 3.

Please kill me now.

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.