Lather, rinse, repeat

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

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

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

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

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

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

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

Life update

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

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

Nothing has changed.

It’s depressing.

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

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

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

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

Feeling really down.

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

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

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

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

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

Kaiser may be the death of me.

Let’s recap:

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

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

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

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

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

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

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

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

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

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

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

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

This updated ultrasound says “multiple small” fibroids.

The previous report says they are intramural fibroids.

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

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

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

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

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

– saline injected ultrasound
– MRI

to get more detail about the cyst and the fibroids.

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

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

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

to stop growth, pain and bleeding of the fibroids.

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

I am freaking out about ovarian cancer.

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

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

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

Anger is an energy

Time moves slowly at Kaiser Permanente.

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

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

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

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

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

I await your prompt reply.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To pee in a cup.

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

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

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

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

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

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

But now I have 30 Tylenol 3.

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

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

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

I hate living this way.

Additional diagnosis and hot potato

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

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

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

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

[technical difficulties, will try again soon]

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

On May 12, I got an answer via email:

Hello,

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

PELVIC ULTRASOUND

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

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

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

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

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

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

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

FIBROIDS?

Another fucking diagnosis?

Are you kidding me?

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

So I did some research.

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

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

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

 

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

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

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

Then I emailed my doctor:

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

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

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

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

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

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

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

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

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

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

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

And now I wait for the next round to fight.

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.

Doing physical therapy, now.

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.

PelvicFloorDysfunctionPhysicalTherapyExercises

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.

Gabapentin side effects

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.