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.

Kaiser (and all HMOs) sucks.

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

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

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

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

This is exactly the same thing that happened last month.

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

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

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

Pain Management appointment

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.


IMG_0579

Me and my girlfriend.


 


IMG_0625

SF Pride Parade.


 


IMG_0655

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.


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Me and my Ma.


 

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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…

Bedridden days are here for me again

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.

Today is a rough day.

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.

Happy New Year…

Sorry I’ve been away for so long.

Just so I don’t leave you hanging, I did not have a better day after my last journal entry. In fact, it was my worst pain day at work that week. I wore a heating pad all day and consumed 1,600mg Advil.
After that date, I didn’t record my pain for the rest of the week. I was likely too pissed off about the pain to bother recording it. Although I had noted on December 1 “Nausea, extreme fatigue, shakey legs, mild to moderate pain. dark brown flow, turning to red.”

I got my period again near the end of the year and was actually bedridden from the pain.

THIS PART IS IMPORTANT:

Since December, I have become sexually active again, and as a result have been dealing with drama in one case, and what my housemate calls ‘New Relationship Energy’ in another case. So maintaining my endo blog had not been priority. ;)

Although I blamed becoming sexually active again as the reason why I must have been bedridden. Why else would I have had such a great year previous to that, pain-wise, other than the fact that I’d had a noticeable lack of sex, specifically penetration sex?

Ok, interrupting the pain diary for a moment to tell you about relationship stuff!
In December and again in February, I had a fling with a friend. I ended it after February, though. In March, I began seeing a newish friend, and we’ve been together – not separated by more than five days at a stretch – since March 21st (Happy Spring!).

Right…back to the pain blog:
Looking back through the last 24 months of my blog, it reads like someone who grabs at straws each month, looking for a tiny amount of hope that things could be improving pain-wise, but in reality the pain actually has remained the same the entire time.

For all of 2013, though I was bedridden only once, the pain continually got to between 7 and 8 on the pain scale, which is still unacceptable. The surgeries have not been worth it in that regard. The only benefit of surgery was a short-lived lengthening in span between pain cycles. The Gabapentin is what helped me to not be bedridden for over a year, until I became sexually active again. The end of December and into January was very rough on me, pain-wise. Same thing for February.

During March, I pushed through the pain because there was so much already planned for that weekend. I got up to a level 7 pain on March 13, and said ‘screw it’ and didn’t record my pain levels for the rest of the week/weekend because of all that was going on.

In April, I got george TWICE. On top of that, I began dealing with severe low back pain. I wasn’t sure if it was related to endo, a cyst, or spinal deterioration. I went and got an X-Ray, and bone spurs were found on my lumbar spine (#1-3).

My latest cycle began April 29th. The pain was intermittently bad. I consumed over 1,200mg Advil a day for a week. On Friday, May 2, I was out with friends and had to pee every half hour it seemed. On the way back home that night, the pain ramped up and was so intense on the left side that I cried a little. It hurt to be in sitting position. I just wanted to be in bed with a heating pad. Again I wondered if I had an ovarian cyst, or if the endo was sticking my left ovary to the back of my uterus again. But I didn’t want to dwell on that, because it’s too depressing.

Oh! Also…starting in January, 2014, my cycle changed from 28 days back to 25 days. It took a few frustrating months for me to notice, but after continual let-downs when my period showed up 5 or more days ‘early’, I went back and re-counted my cycle days again. Sure enough, it’s back to 25 days after a short stint on a 28 day cycle.

So now you are basically up-to-date.