I Will Not Suffer In Silence

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.

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

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

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

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

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

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

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

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

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

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

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

We shall see what happens.

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

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

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

Me and my girlfriend.

SF Pride Parade.

The crowd at SF Pride.

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

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

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

Me and my Ma.

Me and my chosen sister.

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

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

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

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

I vetoed all but NSAIDS and TENS unit.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As mentioned in my previous post, I have not been bedridden but for one day in…officially five months, now.

I’m enduring a new endometriosis flare, which is why I decided to post to my blog. While not currently bedridden, there is always the chance that the pain will get bad again as the endometriosis continues to grow, so I greet each non-bedridden day with a sigh of relief.

My head teacher is out of work this week with the flu. I had the flu back on February 8th, but Ms. V has it *really* bad. I filled in as head teacher yesterday and today, and will do so again tomorrow, so I’m hoping the pain doesn’t get any worse than it already is (I’m currently about a 6 on the pain scale).

I’m also down to my last few Tylenol 3 pills, so I have to be at a 7 or above on the pain scale before I can justify taking any. I just sent out a request on Facebook for anyone who is willing to score me some Tylenol 1 pills. It’s not Tylenol 3 but it is easier to purchase, especially if one lives in or really close to Canada, where it is sold over the counter.

I was supposed to start seeing a pain management specialist in the fall of last year, but finding out about my husband’s affair ended my rational world, and I could barely keep myself alive, much less pursue time off work for pain management appointments. I’m still in the woods psychologically speaking – the depression comes and goes, taking steep dives regularly but thankfully not every hour of every day anymore (thanks to Gabapentin and Zyprexa and Vitamin D).

I found out that I can remain on his insurance, but do I really want to? It’s just one more thing to keep me tied to him.
If I join my workplace’s health insurance of choice (Kaiser Permanente), I will have to pay a huge co-pay each time I do pain management and doctor appointments, until the deductible is met, and I don’t have the money to do that.

I don’t know which way to go.

As if going through a divorce and still dealing with medical crap, and all the associated medical bills isn’t enough… I had to put my cat to sleep on February 12. Kijika (Kee-yee-kah) had pancreatic cancer which had spread to his liver, and he was already end-stage renal failure. He lived a long life – less than a month shy of age 17 – and I did the best I could for him. I spent two days crying, but I had seen that day coming for nearly three years because of the renal failure, and since last September for sure when he got the cancer diagnosis. I am having him cremated and I will keep his ashes in a cedar box that the Vet is putting together for me.

My girl cat Zenaide (Zeh-nay-ed) has been wandering the house meowing with force, and it’s been driving me crazy. I finally caved in tonight and let her sleep on the bed – something I haven’t done since the last time I lived on my own (back in 2003).

That’s all I’ve got update-wise for now.

Let’s start with a review:

My second laparoscopy was December 17, 2010, in which I was diagnosed with new endometriosis growth, and put at Stage I.

My surgeon found endometriomas on both ovaries, and cleaned out as much as she could. She removed a 1.4cm endometrioma from the right ovary, and had to leave the endometrioma in the left ovary, because it was too deeply embedded, and I did not want to lose my ovary. There were adhesions pulling the left ovary back towards my uterus again, just like in 2007, so she cut away the adhesions and repositioned the left ovary as best she could.

I spent the next three months healing from the surgery, and still experiencing debilitating pain. However, between pain cycles in May and June 2011, I experienced 20 and 17 consecutive pain-free days respectively – the highest number of consecutive pain-free days EVER since I began meticulously recording my cycles.

In fact, for the entire year of 2011, I never fell below 10 pain-free days in a single monthly cycle, which was an improvement over the year before.

Beginning in April, 2012, I experienced moderate nausea on the 14th, 17th and 19th (throughout my cycle). I had to take ginger tea, the nausea was so intense. This to me usually signals an ovarian cyst, so I called my surgeon and scheduled an ultrasound.

Then, on May 3, 2012, something unexpected happened, that has (I think) nothing to do with the endometriosis.

On May 2, 2012, the workplace had the carpets cleaned as per routine, but when I walked in the building on the morning of May 3, I immediately had respiratory distress. Now, I have a history of breathing problems and chemical sensitivity dating to 2009, when the interior of my apartment was sprayed by an exterminator for ants at the landlady’s request. But I’d never had wheezing issues or felt like I was drowning in lung fluid before.

On May 3, my breathing got worse over the time I was waiting for a backup assistant to come into the classroom, and by the time someone arrived, I was a sobbing basket-case from not being able to breathe. The director of the school drove me to my doctor’s office, where I had some preliminary tests run, and was given an albuterol inhaler and an epi-pen. I was told I probably have asthma.

Three weeks later, I finally got to see my allergist, who ran me through a computerised breathing test, and detected a ‘lung blockage’ and gave me a steroid inhaler. Within 2 days on the steroid, I had ‘roid rage’ and discontinued it. I continued taking the albuterol inhaler, though. Four weeks after that, I was given another computerised breathing test, and nothing had changed. I was given another steroid, and this one worked for about three weeks, at which time I became clinically Manic on the stuff, so discontinued it. I have used the albuterol throughout, as a ‘rescue’ inhaler.

So the ovarian cyst took a back seat to a new health condition; asthma.

I researched whether asthma is also an autoimmune disease, and was dismayed to find that people don’t really know much about how asthma develops. Even my own asthma specialist doesn’t know if asthma is autoimmune.

The reason I want to know is twofold: first, endometriosis is autoimmune, and when a person has one autoimmune disease, it means they have other concurrent as well as other undiscovered autoimmune diseases.
Second, there have been cases of lung endometriosis.

My family has a history of bronchitis, emphysema and endometriosis, so this is something I should be concerned about. I’ve never smoked cigarettes, but I did grow up in a heavily industrial and polluted area with pack-a-day cigarette smokers. I’ve always been sick with sinus infections and bronchitis every winter and/or spring.
Oh and hey, as of a 2010 study, it appears that emphysema may be autoimmune. File that away for potential future reference…

In the meantime, my periods were getting worse, and I was back to being fully bedridden during each cycle – something I’ve not had happen regularly since before surgery in December, 2010.
This means I had just over a year and a half of slightly improved health from surgery. That is to say, I had a longer uptime between periods, and one or no bedridden days per cycle, BUT I am still getting up to 7 or 8 on the pain scale at times, I am still experiencing heavy bleeding, and I am still consuming Tylenol 3.
Basically, it boiled down to “I’ll take what benefit I can get from the surgery.”

Once I was being treated for the asthma, I went back to address my worsening symptoms, still suspecting an ovarian cyst. On July 11, 2012, I saw my surgeon, who performed a vaginal ultrasound. She detected a 7mm (0.9cm) endometrioma on my right ovary.

For those who are questioning, YES, it IS possible to detect endometriomas through vaginal ultrasound. My surgeon visualised the 1cm endometriomas on both ovaries in September, 2010; three months before my surgery (more on sizing in a moment).

So my suspicions are correct in that I once again have an ovarian cyst, but I had not anticipated an endometrioma. I thought it was just an ordinary cyst, and I wanted to get specs on it to make sure it wasn’t too large to reabsorb.

What I got instead was really bad news; an endometrioma does not reabsorb or go away.

Ovarian cysts are formed when the egg doesn’t fully release from its follicle, and just keeps growing inside of the follicle. The cyst can live in or on the ovary, or in the fallopian tube, and most often goes away on its own, despite causing some nasty pain and/or nausea while it is present.

An endometrioma is “a tumor containing endometrial tissue.” Endometriosis has traveled outside of the endometrium and has embedded itself onto or into the ovary, where it begins to grow. It is called an endometrioma when it goes from being an embedded implant to a growing, swollen, fluid and blood-filled foreign mass. It is now called a tumour.

I’m told that endometriomas are not considered a threat under 4cm in size. Past that, one should be closely monitored in case the tumour turns malignant.

We discussed how to manage the endometrioma and the endometriosis in general for the long term. My surgeon knows I will not take hormone therapy. I made it clear to her that I also do not want any further surgery unless my life depends upon it. I told my surgeon that I just want to be made comfortable til I hit menopause. I want pain medication and pain management. I’ve already put myself back into acupuncture, massage and naturpathy for alternative healing.

My surgeon exclaimed that it’s such a long time before I hit menopause. I told her no, my Ma hit menopause by age 43. My surgeon has referred me to a pain management clinic, and is still urging me to try the Mirena IUD, which puts out a small amount of levorongestrel (the same ingredient as in emergency contraception called Plan B). Due to my extreme sensitivity to hormones in the past, I don’t care how small the dose is, I’m not touching any further hormonal therapies.

I had a phone call with my Ma today, and confirmed that she hit perimenopause by the time she was 40, and was definitely in menopause by the time she was 43. She said her mom also had early menopause.

So that’s where I am at…waiting for menopause to hopefully burn the endometriosis out. It’s a hope, with full knowledge that it might not work.

I just discovered a blog wherein a fellow endo sister asked others to share their story. So I sent her my story, and then realised I really didn’t have a narrative of it here on my blog. So here is my story:

I got my first period at the age of 14 in 1985. By the time I was 15, I was vomiting from painful periods. Everybody told me I was being a baby about it. My mother threw Midol pills at me and told me to shut up. My friends did not have the pain as bad as I did, so I knew there was something wrong.

In 1991, I was put on Loestrin, firstly as a birth control method, and secondly with the potential benefit of easing my cramps. I went psychotic inside of 3 months, and stopped treatment. I wasn’t very good at recording details of my pain or treatments back then. All I have is the memory of wanting to kill everything in site, and weeping all the time, so I stopped Loestrin treatment.

In 1996, when I was 24 years old, I was fed up with people telling me that this pain was common to every woman, when I saw for myself that this was a damned lie. NOBODY around me was going through what I was going through, and I certainly wasn’t making this shit up. I hired a new gynaecologist – a man this time – and he told me I hit every symptom in the book for Endometriosis. He scheduled me for surgery, but my boyfriend got hired across country for a new job. I desperately wanted to go with him and leave the hometown we’d been trying to flee from for years. I promised the surgeon I’d schedule surgery as soon as I moved across country. How hard could it be? I’ve already got one doctor saying I likely have Endo. All I have to do is take that paperwork with me when I move, hire a new gynae and get the surgery.

THAT WAS A MISTAKE.

See, I knew nothing about health insurance in the United States. I had great Preferred Provider Organisation (PPO) coverage when I lived in Michigan. When I moved to California, suddenly the health insurance of choice for employers was Health Maintenance Organisation (HMO) coverage.
Under HMO insurance, it’s all about preventing illness, not treating existing illness. If you have existing issues, they don’t want to talk to you – they want to deflect you to other services. I spent the next ELEVEN YEARS begging doctors for surgery, only to be told I don’t have endo, I ONLY have Irritable Bowel Syndrome, or I ONLY have Dysmenorrhea, or I am simply out of shape and need to spend more time at the gym (I was bicycling 30-60 miles on average during this time, for fun!).
I was referred to chiropractic for period pain!! I was flagged as drug seeking for the pain!!

In 2001, I convinced my HMO primary care doctor to send me to a surgeon for evaluation with the suspected diagnosis of endometriosis. I was so excited to be so close to an official diagnosis. When I got to the surgeon, she flat out denied me surgery! She said I ONLY have Dysmenorrhea. She took a biopsy of my cervix, without any pain meds, knowing full well I’d driven there myself with no one to drive me home. I left her office feeling completely violated and abused. I noted the degree on her wall – University Of Alabama. I wondered if all doctors who trained in the South were this barbaric. She said my cervical biopsy came back normal. I fired her.

In 2005, I once again sought the help of a male gynae, hoping for a compassionate doctor such as the one I had back in 1996. Nothing could be further from the truth. This doctor looked me up and down with disdain as I told my story, and replied that I did not have endo – more likely it was bladder infections or sexually transmitted diseases! I noticed the degree on his wall – University of Kansas. Again, I wondered if all doctors trained in the South were specifically trained as barbarians. He was rude and condescending, but I let him perform a pap smear, hoping to exonerate myself. When the pap smear came back normal, and again he insisted I did not have endo, I fired him immediately.

Finally, in 2006, a friend referred me to her surgeon, and I had also finally scored a job which allowed me to have PPO health insurance. I saw the surgeon, told her my story, and she scheduled me for surgery. In February, 2007, I was laparoscopically diagnosed with Stage III Endometriosis on the ovaries, bladder, uterus and peritoneum. I was also told that I have a retroverted uterus and an everted cervix, which could account for Dysmenorrhea aside from the endometriosis. On that note, I was finally officially diagnosed with Dyspareunia. Why the hell wasn’t I told any of this when I had my cervix biopsy back in 2001?!?

I filed complaint against the surgeon who saw me in 2001, who had refused to give me surgery and who had said emphatically that I did not have endo. She was, coincidentally, a colleague in the same hospital as the surgeon who DID diagnose me with endo in 2007.
The hospital performed an investigation and came down unequivocal on her side, instead blaming my primary care doctor for improper referral, which had confused the surgeon, who did not know I was there for a surgery consult!! Are you kidding me?!?!

I experienced NO pain relief from the surgery. Initially, I was put on Yasmin to suppress the ovaries after surgery, but within one month, I exhibited the terrifying symptoms of Akathisia and Anhedonia (I just learned of the term Anhedonia from another fellow endo sister’s blog post, entitled Progesterone intolerance: Loss of enjoyment).

Two months into the Yasmin treatment, I was completely suicidal and had to be placed on 72-hour lockup while the doctor stopped the Yasmin treatment and fed me full of Xanax around the clock.
After that mess, I found that I did experience longer amounts of time between endo flares, where I was more often pain-free and had more energy. Each menstrual cycle however was the same as it had always been – I was bedridden from the pain. Six months post-op, sobbing in the surgeon’s office, she admitted to me that she had not gotten all of the endo out of me – that there was a spot on the bladder reflection – she was too afraid to get to it, because she feared she would have ruptured my bladder.

I knew this meant I’d have another surgery.
Three years later, in 2010, I had my second laparoscopy, and was re-diagnosed with Stage I Endometriosis. Again, my uterus and ovaries were covered with endo, and now endometriomas in the ovaries as well. There was a complication during surgery – they accidentally ran into the mesentery
The second surgery showed better results, but I have never been completely pain-free during my cycle. I may have spent far less time bedridden in 2011, but I still experience level 6 and 7 cramps, and I still have to come home sick from work. On the upside, I experienced 20 consecutive pain-free days in a row after this past surgery. It was amazing.
Of course, 14 months post-op, the endo symptoms are returning again. I have decided against further surgery, since I’m in the home stretch for menopause, which should begin anywhere in the next 6 to 10 years. That seems like a long time, but when surgery has been an ineffective pain management tool for me, and I’ve already been suffering with endometriosis for 26 years, I choose my battles carefully. I know the behaviour of the endo in my body. I have figured out my windows of uptime. I’m tired of hormonal and surgical experiments to quell the pain, which only brings up new and more terrifying complications.

I am fully aware that endometriosis could continue to ravage me despite entering menopause. If that becomes the case, I may go in for the big surgery – hysterectomy. Unfortunately, since the endo attacks my ovaries, I’d have to lose them, which means being put on HRT. If there’s ANY endo left in my body after a hysterectomy, then the HRT could stir up a new hornet’s nest, because endo feeds on any estrogen – whether natural or synthetic. There’s also the issue of progestin intolerance, which I am convinced was the case in leading me to become completely mental when I was on Loestrin and Yasmin. So far, I have refused any other hormonal treatments. No Lupron, no Danazol, no GnRH treatments of any sort – none of it. I refuse. I would rather have pain every 25 days for up to 4 days than ever deal with Akathisia, Anhedonia and planning suicide again.

For further information, see Things I’ve Tried To Combat Endo.

Holy Moly, how did we roll into another year already?!?

Rather than chronicling all the bad stuff, let’s catch you up on some good things:

My uptime (no endo pain) began on December 14, and continued for 15 days!
December 22 was the last day of work for the winter break, and I got to spend good quality time with my husband and our local friends. I don’t normally celebrate winter holidays with family, because I live clear across the country from them, but I did get to talk to my family by phone. I even got to attend a party with my Michigan friends via Skype!

 
Giftmas, as I call it, was happily low-key. I am quite loved by my students and workplace, as there were a great many gift cards, hand-made gifts, and other wonders! From the gift cards, I received a bounty of new books to read. My husband got me a digital EMF detector, because I like to ghost-hunt, and because I’m also sensitive to EMF, so reducing it or avoiding it early and often is key for my well-being!

We spent Dec. 25 at a friend’s house; they are like family, so it is a relaxing, cozy environment. We went dancing on Dec. 26, and for New Year’s Eve, we went to two local bars to celebrate with friends and acquaintances.

 
My husband and I also watched a lot of Rome – an HBO miniseries. Our friend loaned it to us on DVD and we’ve been enjoying the hell out of it. I’m a bit of a history nerd, so we’ve been watching the series with the historical captions function activated. :)

During the endo uptime…actually from day 1 of the endo uptime…the discs in my neck pinched a nerve, and I have been dealing with that since December 14. It was the second time in a month that the discs pinched on a nerve in my neck; the same happened back on November 20, but the pain only lasted 3 days before righting itself. The pain this time was so bad for so long, that I missed 3 days of work. I spent all of winter break moderately to heavily medicated on muscle relaxers, Tylenol 3 and Advil. The doctor wants to do cortisone injections, which I put on hold until I got the results back from allergy patch tests to see if I have a sensitivity to cortisoids (I don’t, according to the patch test). My Ma had a really bad experience with cortisone treatment, and she and I are both highly allergic to penicillin. Because I share similar allergies to hers, I wanted to be tested before undergoing further treatment.

The joke during this time was that although I had pain, it was nothing compared to the endo pain!!

Excerpt from Facebook:
Definition of stubborn: driving self to doctor & errands on Tylenol 3 & Soma (pinched nerve is worse after trying new neck pillow). HEY, this is nothing compared to endometriosis pain! lulz
-December 30, 2011 at 1:05pm

I’d love to have muscle relaxers for each endo flare, too, but A) they’re addictive and B) they make me fat and depressed, so I usually steer clear of muscle relaxers unless the discs act up.

Of course, now that I’m cleared for cortisone injections, my neck decided to ease up! It was the longest period of time that I can recall pinched nerve activity. It was pretty brutal.

On Dec. 26 and Dec. 31, I wore eyeliner when I went out with friends, but for some reason, my eye hated the same eyeliner on NYE. Two days later – that’s today – I developed pink eye. It’s the SIXTH TIME since October 3, 2011 that I’ve had pink eye, all of which started around the time I began using Maybelline Great Lash mascara. I got a chemical and environmental allergy panel done at the end of December, and it did come back as suspect for sensitivity/allergy to cosmetics ingredients. I say suspect, because one doctor said YES it’s positive, and one doctor and one nurse said NO, it’s inconclusive. Damned doctors. No, of course there was no blood test – only skin patch test.

 
So although I’ve been sick with one thing or another throughout December, I am still happy to report 16 days of consecutive uptime between menstrual cycles. There is positivity in there, I swear!

I also went to the dispensary during winter break, which has become famous overnight, as it’s now part of a television series called Weed Wars. I re-signed up for acupuncture, reiki, chiropractic, yoga and the alexander technique. Most of these services are now experiencing a 3 month wait due to recent fame for the dispensary, and of course it’s wall-to-wall people at all hours, now. I’m really happy for the dispensary, and also feeling a bit selfish for wanting services sooner. ;)

I will finish my New Year’s entry with a list of goals for 2012:

• Go sugar-free again.
• Do a better job from abstaining from alcohol again (I know, that few-times-a-week glass of wine is awesome tasting and relaxing, but may not be doing your cramps any good!)
• Be serious about gluten-free baking at home, so I cut down on processed foods.
• Start biking to work every day again.
• Start posting more positive entries – what I can do, as opposed to what my limitations are. It doesn’t have to be one or the other, but just not all negative chronicling all the time.
• See if I can manifest the idea I had recently to gift fellow endo sisters, to share positivity and love.

(Reposted from Facebook)

 
December 10, 2011 at 8:11pm via mobile
Spent the day drugged to the gills on Tylenol 3, but at a friend’s house playing my first ever Call of Cthulhu game. Bonus – one of the gamers is an acupuncturist who did some work on me during game!
It’s pretty awesome when your friends allow you to play the game while doing various pain management stretches and maneuvers. The lady of the house even had a heating pad for me! ♥

 
December 11, 2011 at 12:36pm
Yesterday after gaming with friends, my husband drove me to my tattoo consultation. Still drugged with pain meds, I walked baby steps from the car to the tattoo parlour. The tattoo artist and I discussed the piece and made some changes, and then I bought a pair of wooden earrings. I’ve been wanting to change out all my jewelry from metal and plastic to natural wood and stone jewelry. One of the women at the shop misjudged my earring size, and I ended up with a stretch nearly a gauge in size. I was about 6ga – she took me to 4ga when she put the wooden earrings in. However, the resulting endorphin rush had a positive effect on my endometriosis pain…as in it nullified it for a couple of hours!

YAY!!! I was even able to walk up a San Francisco hill to get back to the car. Holy crap, you have no idea how cool that was. I should do endorphin pain management as endo treatment every month.

 
December 11, 2011 at 3:57pm
(Attempting to keep some positive thought up)…

Something that I have done which you may not have:

I have ridden on a donkey in a Bedouin village near Netanya, Israel.

Last night, I developed uterine cramps after eating pasta alfredo with Langostina tails for dinner.
I also had a cup of caffeinated tea with dinner. The pain started on the way to a concert, and got worse throughout the night. Standing or sitting did not matter, the nerve pain stung and radiated from the uterus, settling in the lower back, causing debilitating pain by the time I left the Peter Murphy concert. I descended the stairs of the concert venue slowly, wincing with each step, clutching the railing.

By the time I got to the bottom of the stairs and was out on the street after the concert, I was nauseated from the pain. On the way home, every time the gravity changed in the car (turns, changing lanes, curving highway), the inflamed nerves screamed, and I cried out in pain.

However, once I got home, I refused to take meds, because I wondered if it was my kidneys acting up. Other organs are easily afflicted by endometriosis, and if the kidneys were suffering, then adding pain meds might make things even harder on me to process. Instead, I used an exterior pain relief gel, and did some Chi Nei Tsang around my pelvic cradle to see where the pain was coming from, and how it was radiating out.

Though the stinging, burning nerve pain felt like it was in the sides of my pelvic bones, in my lower spine and radiating down my legs, the Chi Nei Tsang helped me realise that the originating source of the pain was actually in the uterus. It was so inflamed that the nerves broadcasted a pain party to the entire pelvic cradle. It grabbed hold of the trunk of nerves in the pelvic cradle and shot down the sides of my legs, almost to my knees.

The pain relief gel comes from NationalAllergy.com, and it is called Super Blue. I rubbed that on my lower back, and then situated a heating pad over my pelvis.
Further, I moved my body slowly to figure out the best position for rest. It was one of those times where I wished I had my old futon mattress again, because our bed was far too soft given the level of pain I was in.

Last weekend, I had developed pelvic pain on three occasions right after drinking coffee, so I have since gone back to drinking caffeinated tea, and only in moderation; one cup at a time, and not every day. I had not recently developed pelvic pain with the tea, so I’m suspecting the langostino shellfish as the culprit to my pain. Shellfish is said to contain lots of dioxins, which feeds endometriosis growth and flaring, though there has not been any in-depth studies that I know of to show you to prove this. It’s just one of those things that I know to be a solid suspect, based upon my pain history when consuming shellfish, especially at or near my cycle.

This morning, I am running late for work, and the stinging pain resumed once I crawled out of bed. I will be taking 800mg of Advil gelcaps to get through the day. I am two to three days away from the onset of my next cycle; george will be here by Wednesday or Thursday, in time to ruin weekend plans. However, I have a consultation with a tattoo artist about a design I want on my upper back, so I plan to be there, drugged to the gills or not.

During this month’s uptime, I accomplished the following through the Prop 215 dispensary:

• Attended two Alexander Technique weekly classes.
• Attended one Iyengar Yoga weekly class (I would have gone to a second class but work held me over)
• Got free acupuncture

 
During this month’s uptime, I accomplished the following:

• spent several hours aboard the U.S.S. Hornet walking around, ascending and descending stairs, and sitting on hard floors
• attended two going-away parties back to back
• got reeeeeeeally drunk
• went to the circus for father-in-law’s birthday request
• bicycled to work three days in a row, for a total of 8 miles
• went for walks
• continued my yoga lessons nearly every night before bed
• helped pack away a classroom of its summer theme and helped prep it and another classroom for the coming school year

 
Along with the getting drunk part, I also ingested more caffeine and more sugar than I should have allowed myself to do. I felt stressed out this whole month. My sister-in-law was hospitalised with a pulmonary embolism (she’s now home and managing it with medication), and the aftermath of my drunkening had me seriously in the doghouse with my husband, and had me feeling very depressed for a whole week. Oh, and both of these things happened the same exact week. Being on the U.S.S. Hornet was draining, because it required heightened psychic sense (we were ghost hunting), and there was some national news that triggered me emotionally (also in the same week as my sister-in-law’s hospitalisation). The week of August 14 – 20 was a really bad week.

Despite the emotional roller coaster, I experienced SIXTEEN, count ’em 16 pain-free days in a row! Sixteen consecutive pain-free days!

WOW! I definitely have a trend showing itself five months after surgery!
From May to June’s cycle, I had 20 consecutive pain-free days.
From June to July’s cycle, I had 17 consecutive pain-free days.
From July to August’s cycle, I’ve had 16 consecutive pain-free days.

This is AWESOME.

What’s even better is that no matter what I’ve done to myself diet-wise, the number of pain-free days has barely wavered. Not that I’m gonna go on a booze, caffeine and sugar binge from here on out, mind you. That shit still affects my mood something fierce.

I will say that this month’s PMS has been HELLISH. Perhaps that is tied to the poor diet. I’m angsty, depressed, angry, weepy, and desirous to claw myself out of my own skin. I feel like a three-year-old who can’t tell you what the trouble is and who resorts to screaming and kicking everything in site.

The libido thing is about the same as it is for many women with endometriosis – I enjoyed three intimate days this entire month. There were three in July, two in June, one in May, two in April, two in March, FOUR in February, and three in January. None of that has changed much since surgery, because due to endometriosis, I’m also diagnosed with dyspareunia, which happens with deep penetration. The cramps can often last for days, and the deep cramps not something I want happening between cycles, during my “uptime” or my sacred pain-free time zone. Thankfully, truly thankfully, I have a life partner who understands and respects this, as rough as it can be emotionally for him to have to deal with on his end. My husband is a super hero. We’ve been together for 11 years, and have been married for almost three. :)

I fear today may be my last day of work before I’m stuck at home in pain again for a day or three. I’m hoping I won’t miss work at all this week. On Monday, I required 600mg of Ibuprofen to get through the workday. On Tuesday, I required 1,000mg of Ibuprofen. Both days, I woke up feeling like a Mack truck ran over me. My muscles have been tired, my joints have been aching. I have increased my calcium/magnesium intake, and I’m trying to add more green vegetables to my diet for iron. I should be taking my iron supplement – I’ll do that at lunch today.
So far today – Wednesday – I have not needed to take ibuprofen. I’m heading off to work right now. Wish me luck!