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.

Update on my health

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.

My Story

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.

Special reminder to myself – DO NOT TAKE PLAN B

My husband and I had a lovely wedding anniversary weekend.

As seems to be typical of us on anniversary celebrations, we were not as careful as we should have been during intimacy. And well I’m just super paranoid in general about getting pregnant.

Since yesterday, I’ve wrestled with whether or not I should take Plan B. I knew that I had a warning in my journal about Plan B, so I just read through it:

Me and synthetic hormones don’t mix.

The very latest I can take Plan B would be Wednesday night. But my period is due five days later.

If I take the Plan B, my period might come early, which will seriously throw a monkey wrench in the surgery date, because they won’t operate on me if I’m on my period or within 48 hours of it.

After taking Plan B, my next period could be up to 3 days late, as happened back in 2009. This might counter the previous period being early, but I don’t wanna mess with it.

And let’s not forget the crazy – I just stabilised emotionally after having tried CBD for pain management back on July 26th.
I don’t want to go back into severe depression and suicidal ideation all over again from taking Plan B.

So now I get to spend the next week in anxiety mode over whether or not I might be pregnant, but it’s better than a month or more of emotional whack…but then if I AM pregnant, it will be much worse, emotionally, on me.

AAAAGGGGHHHHHHHH.

It’s one of those rare times where I’m actually looking forward to getting my period.

*sigh*

Part II of new surgeon letdown

WARNING: THIS ENTRY MAY TRIGGER SOME PEOPLE, PLEASE PROCEED WITH CAUTION

I’ve had a combination of not enough time in the day to finish writing about my doctor experience last week, and ongoing emotional trauma over the whole visit. That’s why it has taken so long to continue all that I want to say. I still may not say all I want to say by the end of this post, but I will give it a try…

One of the things the gynecological oncologist told me about my pelvic exam is that I have what’s known as an everted cervix. She said this is nothing to worry about, she sees it all the time. But when I got home and looked it up, the Internet scared me because I kept reading that an everted cervix could be a precursor to cervical cancer. I read that maternal usage of DES could lead one to be born with an everted cervix, other reproductive abnormalities, and autoimmune disease. I read that an everted cervix is considered a lesion and that the best treatment for this is to cauterise the cervix!

WTF!!!

I am so sick of doctors torturing my private parts! I had a flashback to the gynecological surgeon back in 2001 who emphatically told me I did not have endometriosis, so she wouldn’t give me surgery, but she insisted on a cervical biopsy without any anesthetic or pain meds. I went home nauseated and shaking from the pain and trauma of that visit and have hated her ever since. I filed a formal complaint against her in 2007 after her colleague operated on me and found stage III endometriosis with my left ovary stuck to the back of my uterus and my right ovary stuck to my pelvic sidewall, and more endo found between the bladder and the pelvic sidewall.
An inquiry followed, with the panel finding the previous gyn not at fault – no wrongdoing – no censure, nothing.

GAH, I hate people.

ANYWAY, after the Internet made me panic about having an everted cervix, I called up my two most recent gynecologists and requested they tell me if they’d noticed whether I have an everted cervix. The one who mattered most called back. I say she mattered most because she saw my cervix before surgery in 2007. The eversion was present even before surgery. How far back does this go, I wonder?
Anyway, she left a message saying she has no idea what this new gyn is telling me, but I don’t have an everted cervix. I have what’s known as an ectropion cervix, and that too is nothing to be concerned about.

After listening to her message, I looked it up; ectropion cervix is the SAME THING as everted cervix.

These doctors, I tell ya I wanna strangle ’em.

I read up a bit more on ectropion/everted cervix and found that it’s considered to be a non-malignant disorder:

“Nonmalignant disorders of the cervix (the narrow opening at the mouth of the uterus) include cervicitis, cervical eversion, cervical polyps, and cervical dysplasia. Cervicitis is a broad term for an inflammation or infection of the cervix. Cervical eversion, also known as ectropion (often mistakenly termed cervical erosion), is the migration of cells from the lining of the endocervical canal (endocervix) to the outer portion of the cervix (ectocervix). The cells from the endocervical canal are more delicate than the cells of the ectocervix and thus more susceptible to infection. Actual erosion or abrasion of cervical tissue is quite rare but may occur following childbirth, certain medical procedures, sexual intercourse, or the use of an intrauterine birth control device (IUD).”

Further, the website states that “Cervicitis may be caused by vaginal infections, sexually transmitted diseases, and pelvic inflammatory disease. Tears or lacerations in the cervix occurring during childbirth or abortion may lead to cervicitis. The cause of cervical eversion is not known. The condition is normal in early puberty, and some women are born with it. Pregnancy and long-term use of oral contraceptives may increase risk.”
Well, I’ve had two abortions in my lifetime, one which had complications. I’d taken RU486 and nearly passed out from the pain. I thought I would die. I went through it without pain meds because I’d barfed up the vicodin I was given. Four days later, I nearly passed out again because the placenta decided to finally pass. Perhaps this abortion is what created the cervical eversion. I really wish I knew if I was born with it, but none of my previous gyns still have my records on hand.

The other thing that scared me during my visit to the gynecological oncologist last week was that she’d asked if I’d gotten the CA125 test, yet. I looked at her funny and said, “No, no one will give me the test because of my age and the fact that I have endometriosis creates a false positive for that test.”

The gyn/onc nodded and said that yes, the test does give false positives for women with inflammation and disease such as endometriosis, but she would like to run the test, anyway. She wrote me up a prescription to go to a lab and get my blood drawn. That was just one more thing to stress me out that day. My head swirled with, “why is she insisting I get the CA125? Did she see something during the exam? Will she use the results of the test to try to convince me further that I must get a hysterectomy?” I mean, seriously, because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer.”

I’m actually terrified to have a hysterectomy. I’ll be 38 next month and had no relief from my pain from my first endo surgery in 2007. Everyone has underlying issues other than the big issue placing them into the hands of the hysterectomy surgeon, and that’s why so much can get complicated for a hysto. I just don’t trust that this doctor can effectively remove all of the endo from my body before putting me on estrogen-only HRT for the next 30 or so years.

And there’s that too – HRT until I’m in my 70’s.

I’ve started to research estrogen-only therapy for women under age 45. I want to know – did any of those women get cancer quicker?

Sites such as this do NOT help me to want to have a hysterectomy.

Big sites like HERS Foundation and HysterSisters look fishy to me – they look like they’re supported by radicals and/or big pharmaceuticals with their own agendas, while saying they’re there to help women. I’m far too pessimistic to trust that they’re really there for altruistic purposes. I can’t find stats and medical journals to back up info on the HERS Foundation for example. I need non-manipulated data, please! And HysterSisters keeps plugging hormone treatments like Vivelle-Dot and surgical stuff like da Vinci surgical system for hysterectomies. I don’t want corporate sponsorship and advertising!

And then I found this article:

Researchers continue to weigh in on estrogen monotherapy arm of WHI study
December 14th, 2004

Yet another group of researchers, this time from Germany, has commented on the termination of the estrogen-only arm of the Women’s Health Initiative.

“The study arm of the Women’s Health Initiative (WHI) with estrogen monotherapy for hysterectomized women was terminated early after an average of 6.8 years – only 1 year before the planned ending – due to increased risk of adverse effects (HR 1.39, per 10,000 women 12 additional cases). However, according to the regulations of Good Clinical Practice, the early termination was not necessary, as the fixed termination criteria such as exceeding a defined ‘absolute excessive risk’ were not met,” stated A.O. Mueck…

From there, I found an article from OB/GYN Clinical Alert, which reads:

The updated breast cancer results in the canceled estrogen-only arm of the Women’s Health Initiative (WHI) are based on 237 cases of invasive breast cancer and 55 cases of cancer in situ, diagnosed by the February 29, 2004, date of study cancellation.
…The breast cancer results in the WHI do not allow us to answer the above questions with any confidence. Exposure to estrogen-progestin either has a greater risk of breast cancer, or pre-existing tumors respond differently to various hormone regimens, accounting for differences in epidemiologic reports.

…Many of the WHI conclusions are the result of statistical manipulations.

And you can see the progression in the study’s fumblings here.

Now, what is important about the Women’s Health Initiative articles is that all the conflicting data arises out of the 2004 study, but all the quotes the gynecological oncologist uses to make her case FOR hysterectomy without negative side effects are from the 2001 WHI report. She uses the following language in her patient handouts: “We know finally, from the WHI Study, that for women age 50-59 without a uterus, needing estrogen therapy for their symptoms, there is virtually no risk [bold hers] to taking estrogen alone for many years: no increase in breast cancer, heart attack, stroke or blood clot. For women over age 60 still needing estrogen for their symptoms, some unfavorable risks appear: the rate of stroke increases from 0.33% to 0.44%, an increase of .12%. Also, the risk of blood clots in the legs increased from 0.15% to 0.21%, an increase of .06%. The risk of heart attack decreases from 0.24% to 0.14%, and breast cancer risk decreases from 0.29% to 0.21%. All of these changes are teeny-weeny and frankly ignorable for the woman with significant symptoms who needs to feel like her normal self.”

Now…looking at the 2001 WHI report, they had to stop THAT trial, too, because of HRT danger to women! And I quote:

“A review of preliminary data found a 26 percent increase in breast cancer in women receiving the hormones compared with women receiving a placebo. In addition, instead of a heart benefit there was a 29 percent increase in heart attacks and a 22 percent increase in total cardiovascular disease among women receiving the hormones.
…”Dr. Jacques Rossouw, director of the NIH, noted, “the increased risk of breast cancer for each woman in the study who was taking the estrogen plus progestin therapy was actually very small.” It was less than one-tenth of 1 percent, he said, adding, “if you apply that increased risk to an entire population and over several years, the number of women affected increases dramatically and becomes an important public health concern.”

Talk about statistical manipulations!!!! The gynecologist I saw last week is clearly a lying, manipulative sack of shit.

And that’s where I’ll end Part II of my ranting over that one visit to a new doctor.

Bedridden again

The emotional effects of the Levonorgestrel lasted through the end of July before I started evening out again.

Menses was due on Wednesday or Thursday but it didn’t arrive until Sunday, August 9, because of having taken the Levonorgestrel in July. The info on the medication box says that one’s next cycle could be early or late +/- 7 days. Mine was late by 3.5 days.

All of last week at work, I had hypoglycemic attacks. This happens every month right before my period, but usually 2-3 days before my period, not a full 7 days. Ugh.
I also had minor uterine cramping and low back pain on and off for a week before menses.

On Saturday, August 8, I had cramps bad enough that I took 600mg Ibuprofen. I didn’t want to take half a Tylenol 3 because I didn’t want to be loopy at a wedding I was to attend later that evening. The wedding was great, but I did continue to have cramps on and off all night.

On Sunday, August 9, I was feeling extremely tired. I had housework to get done but just couldn’t find the stamina to get off the couch. I had to babysit at 4pm that day, and at 2:57pm, guess what showed up? I downed 600mg Ibuprofen and rushed to the grocery store to get some freezer food, juice, cereal, and other stuff I thought I might want while bedridden. I rushed back home, scarfed down some food, and then went off to babysit.
I really wanted to cancel the babysitting gig, but it was an hour before the start of my shift when the pain hit, I had no idea how bad the pain would get, and it was this couple’s anniversary that they’d been looking forward to, since they rarely get out on a date night since their son was born 9 months ago. I barely know these people but really wanted them to enjoy their anniversary. So I went over.

Babysitting a 9-month-old means you don’t really get a break. I knew this going into it that I could be faced with calling the parents home early if my pain level got to be unbearable.
This particular baby does not get to sleep unless you vigorously bounce him while dancing around and singing to him. He hates to JUST be sat down and rocked to sleep (unless it’s momma, of course).

So there I was, in pelvic and low back pain, having to in effect do a cardio workout on and off for six hours. The baby himself was not that difficult as far as 9-month-olds go, and he got me to giggle several times with his emerging personality and sense of humour.
After I put him down to bed for the night, however, I finally popped half a Tylenol 3, sat down in front of the TV, and waited for his parents.

When I got home Sunday night, I knew that because of my long day combined with endometriosis pain that going in to work on Monday would not be likely. But I had not made any contingency plans for my absense – there was no accessible Internet access at the house I had been babysitting at, nor did I have my contact list for substitute teachers. By the time I got home, it was too late to begin calling subs. So I set my alarm, took another half Tylenol 3 and went to bed with my heating pad.

I woke twice before my alarm went off early Monday morning. The pain was too much to handle and would not allow for restful sleep. It was 6:45am when I began calling everyone on the list to see who might come in and substitute for me. I can’t even remember if I got anyone or not. I called the main office at the school and told them I would not be in and was trying to find a sub. Then I went back to bed. As usual, I didn’t hear back from the bulk of those whom I’d called, and the two who did get back to me said they could not work for me that day.

I spent all of Monday bedridden and cranky from the medication. I’m still on the Tylenol 3 / Ibuprofen cocktail until I see more specialists and surgeons again, who might be able to help me find something that won’t kill my liver, kidneys and GI tract. I’m to see a gynecological oncologist next Wednesday for surgery. The person they want to refer me to for medicinal treatment however is not covered by our insurance. So I’m still trying to figure that out.

It would also help perhaps if I could remember to stick to my Qigong exercises. Beyond that, I force myself out of bed throughout the day to slowly stretch out my torso and arch backwards to loosen the pelvic region. I do slow large hip circles as featured below:

And I do the reclining bound angle yoga pose:

Sometimes these help. I just sorta figured these exercises/postures out for myself. Sometimes it makes it feel like the pain is getting worse. Personally, I believe that the more often I work the muscles, the better it is towards preventing endometriosis adhesions from sealing into place. I really do not want my left ovary stuck to the back of my uterus again, or any organs stuck to my pelvic sidewall again if I can just keep everything moving instead of curling up fetal in a ball of pain and just sitting there.

Whatever works and whatever helps ease the mind as well as the body…

Last night by 7pm I had a feeling I would not be well enough to return to work on Tuesday, so I began a new round of calling teachers. I was able to find someone to work for me on Tuesday, but still I set my alarm and went to bed.
I got up when the alarm went off and instantly pain shot through my pelvic region and lower back. I took another Tylenol 3 and went back to bed. :(

I got up again to see my husband off to work, and I’ve been sitting in a Tylenol 3 haze ever since.

If I have to miss work again tomorrow, I will officially start fearing for my job security again.

Me and synthetic hormones don’t mix

The clock has already reset. I didn’t want to blog about this at first because it’s embarrassing, but for my own historical record, I really NEED to record this.

My husband and I were not careful enough during intimacy on our anniversary, and as a result, I was afraid of an unwanted pregnancy.

I know, it may seem as strange when the media feeds everyone’s brains with the lie that endometriosis always results in infertility. Furthermore, I’ve not seen anyone in the endometriosis forums bravely declaring that they don’t want children. No, instead the forums and media are filled with stories of women with endo who are also having a hard time trying to conceive, and are distraught over it.
Their situation is real and I feel bad for them. I have stage III endometriosis but I am unfortunately still quite fertile, yet I do not want children. If there were only a way to switch that with someone who wanted kids…

Because of my anxiety that I could become pregnant, I sought out emergency contraceptive (in the U.S. it is known as Plan B, and it is over the counter at the pharmacy to women 18 and older).
I have taken Plan B before, many years ago. I knew that it would make me depressed, and I have established that my body cannot tolerate synthetic hormones. But due to our carelessness, I needed peace of mind, and it was only a one-dose hormonal treatment, so I took the Plan B.

Wed. July 15 – anniversary – unprotected sex.
Thur. July 16 – first dose Plan B at 1:58pm. Within 30 minutes, I developed a gurgly stomach, which turned into stomach cramps and intermittent uterine pain for the rest of the day. I also experienced mild nausea. Heavy fatigue took over by 5pm – I could barely keep my eyes open. Later, I had a poor appetite – I did not want dinner. I forced myself to eat a banana before bed. I took a shower, forced myself to do some mild housework, and went to bed by 9:30pm.
Fri. July 17, 2009 – took last dose at 1:58am. I had crazy dreams all night involving tornadoes, floods, murderous gypsy types and a world of magick and sorcery.
Friday – Sunday was hugely emotional, depressive, moody, and angry for me. I spent much of the time not wanting to interact with my husband or anyone, because I was in such a bad head space to even try saying anything polite. I mean, even my husband was concerned about me, and at times got his feelings hurt, and would react by saying, “hormones.” I seriously agree – I also attribute the moods and anger to the Levonorgestrel.
Tue. July 21 – I had an unexpected sugar crash around noon. I only ever get hypoglycemia right before menses begins, because my hormones are out of whack. Ever since adhering to a gluten and yeast free diet since 2006, I don’t get the hypoglycemic attacks with regularity – ONLY within a few days of menses. So having a sudden sugar crash on July 21 concerned me.
Wed. July 22 – 12:20pm I had another hypoglycemic attack, AND began spotting. It was dark red “dirty blood” and looked a bit coffee ground-like sometimes. There were tiny clots. Shortly after going to the bathroom, the cramps started.

I checked rxlist.com for info:

“Some women may experience spotting a few days after taking Plan B™”.

“The effects of Plan B™ on carbohydrate metabolism are unknown. Some users of progestin-only oral contraceptives (POPs) may experience slight deterioration in glucose tolerance, with increases in plasma insulin…”

I took 600mg Ibuprofen, called my GYN and ordered a refill for Tylenol 3 (I don’t normally let myself run completely out but accidentally did so this time), and took off to the grocery store to get some ready-made foods in case I would be bedridden again.

The spotting lasted all day, and so did the cramps. On the pain scale, I’d rate the cramps as a 4 on the Mankoski Pain Scale. Over the course of the day, I also developed low back pain, but I mostly attributed that to having moved stuff around all day (and yes, I did wear a protection belt for lifting).

Thur. July 23 – I awoke around 5:39am from the pain. I went to the bathroom and found to my dismay that I’m full on bleeding – I filled the bowl with blood. The pain in my lower back became very strong, and I started to get a bit nauseous. The pain level was at 7.5. I took my temperature but it was ‘normal’ (normal for me being around 97.5°F, but I don’t have thyroid issues, so say all the blood tests I’ve gotten for the past ten years… riiiiiight).
I called the makers of Plan B and told them about my experience. They said it was all normal. They said some women spot and others get what looks like a full on period. She even said the level of low back pain and the cramping were normal. Still, she took a basic medical history from me to put it on file so they can have a log of adverse reactions up to date.
By 7pm I was severely depressed with suicidal ideation. I called the Plan B hotline again. They have no studies and no records of anyone ever experiencing depression as a side effect to Levonorgestrel.
Fri. July 24 – I bled through my pad, underwear and bedclothes, and went through a pad an hour since I woke up. The cramps were still persistent, ranging from 4-7 on the scale, and mostly centered in the lower back and vagina, or lowest part of the uterus if anything.
I endured a pelvic exam w/ speculum, which made the cramps worse. I did a pee test. Negative as expected for pregnancy. I was told that I am obviously having a reaction to the hormone from the Plan B, and there’s nothing to do at this point but to ride it out, taking Ibuprofen 3x/day, as it is supposed to help ease up the blood flow. The doc also is supposed to send in a script for some Tylenol 3 – not my usual supply – just a sampling as it were, to get me through this. I am referred back to my GYN, who has not returned any of my phone calls this week.
Had another hypoglycemic attack – at 12:43pm. The third in as many days, around the same time of day.
My GYN office finally called back to tell me that my doctor has sent in my Tylenol 3 prescription, which should be ready today. The office seemed indifferent to my Plan B story, but did say the pain with the bleeding seemed unusual.

I spent all last night into today digging through every diary entry I’ve ever made, be it handwritten or typed to myself in an email or filed somehow or another on my computer, because I know I detailed Plan B side effects before. I just can’t remember anything past a general sense of ‘I got depressed on it’.
With all my searching, I found three instances in the past ten years where I took Plan B, prior to the current run:

July 2001
S M Tu W Th F S
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30 31

July 11 – got my normal period
July 13 – drove to Tahoe w/ my hubby (who was then my bf)
July 14 and/or 15, 2001: unprotected sex
July 16 – Period ended but I took Plan B anyway. Depressed from having spent money I didn’t really have that weekend, from getting sunburnt, from being careless w/ sex.
July 17 – continued deepening depression.
July 19 – feeling happier emotionally
July 20 – started spotting, then bleeding
July 21 – very heavy bleeding
July 22 – heavy bleeding
July 25 – stopped bleeding
July 26 – severely depressed and angry
Aug 15 – got my normal period late; bedridden from the pain.

December 2001
S M Tu W Th F S
1
2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 17 18 19 20 21 22
23 24 25 26 27 28 29
30 31

Sun. Dec. 9 – Took Plan B (forgot to take 2nd pill). But one pill was enough to depress my central nervous system and I noticed the depression within a day.
Mon. Dec. 10 – took Flexeril to ease the back pain – I’d thrown out my back the week prior.
Mon. Dec. 17 – severely depressed. 3 hour mental breakdown. Convinced I was still riding the depression from the Plan B. My back was better by the 17th, however.

Did not mention bleeding as side effect in my long journal entry on Dec. 17, 2001. However, I had a phone conversation with my ma, who was still going through menopause at the time. I had asked if she could see a doctor to ease the menopause side effects. She said she can’t take hormone pills – they mess with her – make her angry, very bitchy and depressed. She said her older sister, my Aunt J, gets the same way. I told my mom that was VERY good family info to have on record.
It’s already been noted by my mom that several of her sisters had painful periods like I do. Adding sensitivity to hormone pills, and depressions locks it down to a known family history.

Well, you know how people are stupid and history repeats itself…

October 2002
S M Tu W Th F S
1 2 3 4 5
6 7 8 9 10 11 12
13 14 15 16 17 18 19
20 21 22 23 24 25 26
27 28 29 30 31

Tues, Sept. 17 Got my period, which was quite painful
Monday Sept. 23 Had a severe emotional breakdown
Tues, Sept. 24 Sister called and told me she’s pregnant
Sun, Sept. 29 Hubby (then bf) and I fooled around
Tues, Oct 1 Took Plan B, paranoid from fooling around
Fri, Oct 4 My sister arrived from Michigan to visit
Thurs, Oct 10 I became sick; strep
Sun, Oct 13 Sister departed for Mich, I called in sick
Mon, Oct 14 off work sick, went to doctor
Tues, Oct 15 off work sick, got my regular period
Wed, Oct 16 returned to work, still very depressed

Did not mention bleeding as side effect in my journal entry on Oct. 17, 2002. Still trying to find any emails or journal entries from that time frame to see if I talked about bleeding at all.

I’ll be adding the full text of those diary entries at some point, just so I have the history on this site.

I’d like to note for the record that Plan B has the same ingredient that is found in the Mirena IUD, which my gynecologists have been begging me to try since 2006.
Since I cannot even handle low doses of drospirenone and ethinyl estradiol synthetic hormones (as found in birth control pills), and now I know that Levonorgestrel also sets off the depression and rage, there is no way in hell I want a continuous dose of it through the Mirena IUD. I do not want a repeat of 2007, when I became suicidal on Yasmin, thanks.

My husband said he is going to look into getting a vasectomy.

In the meantime, I have to ride the rest of this nightmare out, and then in the next two to three weeks, endure more pain and suffering when my actual period reappears.
I hope that I can once and for all remember two things: be super careful if I don’t want to worry about pregnancy, and never, ever, EVER take Plan B or any synthetic hormone ever again. My husband said he is happy to remind me to never go near hormones again after seeing me get severely depressed from them twice, now.

The Petal Study

I’ve been meaning to update you about something my friend told me about last month. It’s called the Petal Study. Quoted from their website, “The purpose of the research study is to evaluate the safety and effectiveness of an investigational medication for the management of pelvic pain associated with endometriosis”.

I filled out a questionnaire and qualified for the study, and was really excited about what this could mean for me. A representative phoned me and went over the details. The “investigational medication” is a “lupron-based” injection that must be taken regularly. They insist it’s better than Lupron itself, but note that side effects are firstly hot flashes and secondly depression, same as with all other birth control pills and Hormonal treatments.

This “lupron-based” medication is known as a GnRH agonist, which has already been used to treat women with Endometriosis. It’s just that this would be added to the list of other GnRH agonists out there if approved by the FDA.

What GnRH agonists do is they eliminate estrogen from the body. I told the researcher that without estrogen in the body, this produces the hot flashes and she said “yeah the hot flashes are a big problem so far”. I asked if there’d be any “add-back therapy” such as a synthetic estrogen or a progestogen of some sort, and she said NO.

That’s strike one, because, and I asked and had the researcher confirm, the side effects of GnRH agonists are bone loss/osteoporosis, hot flashes, insomnia, reduced sex drive/vaginal dryness, headaches, muscle cramps, severe acne, and depression. My surgeon tried to get me to go on a GnRH agonist nasal spray after the Yasmin synthetic hormone therapy nearly killed me. I told her no friggin way.

Strike two is a branch of strike one: depression. I’m diagnosed Major Depressive and was at one time on anti-depressant and anti-anxiety medication to treat my condition. I’ve had depression since about age ten. I told the researcher about this and she said no problem, all I have to do is get on anti-depressants while enrolled in the study.

I told the researcher that the whole reason I got off the anti-depressants was because after trying several of them over a two year period, they all had really negative side effects, most notably muscle cramps and joint pain, to the extent that I had to go to physical therapy on a weekly basis while on the anti-depressants.
The researcher said no problem, all I have to do is take Ibuprofen regularly for the muscle cramps that result from taking the anti-depressants that I have to take to combat the side effects of the “lupron-based investigational medication”.
That’s strike three.

I thanked the researcher at that point for her time and declined to participate in the study.

This sent me into a ranty tizzy, and I thank my man for listening to said rant AND agreeing with all the points that I made against participating in the Petal Study. There are so few people on my side who truly have seen and empathise with what I go through – those who do not have the disease themselves but who have educated themselves about the disease on my behalf, or who take me at face value on this disease. I can count these close people only on one hand. Not even my own family is amongst these people.

So, my hopes about this study were actually dashed as soon as the researcher uttered the words “lupron-based”. I’ve witnessed recently what a friend goes through on a “lupron-based” injection – she turns beet red and says she feels like her body is on fire – this can last for over 20 minutes at a time, and she has to strip down to a tank top and shorts no matter where she is. She has electric fans blowing on her all the time at work. But she doesn’t have the depression/suicidal side effect like I get.

My only options to treat this disease are more surgeries because the stuff grows back, continued vigilance on diet modification to eliminate foods which trigger pain or contribute to the pain, and continued use of pain medications to treat the pain, which offer up their own breed of side effects, most notably constipation and destruction over time of the lining of the stomach, intestines and bowels.

It’s been a couple or a few weeks since this phone call took place with the Petal Study researcher. I’d been meaning to sit down and write about what took place, but I’ve been depressed about that conversation, depressed about my job situation, and busy with stuff on the home and work front.
So I’m just now taking the time to catch up on that. My next journal entry will be a rant about the surgery issue.

George update

On Friday I had my six month checkup with my surgeon. She said she didn’t feel anything unusual in there, and she did a pap. I’ll find out the results in a couple of weeks.
She said she’s upset that a) the surgery didn’t provide relief and b) I won’t consider different hormonal treatments.
Further, she mused that she should have done a hysterectomy when she had the chance. I told her that if she took everything, I’d have to go on hormone replacement therapy (HRT), and I’ve already told her several times, no more hormones. She then said she could have taken the uterus, leaving the ovaries intact.
To which I replied that with the ovaries still intact, the Endo still has the chance to thrive, and as she can attest, I do have a stubborn case of Endo, so in my case, I’d call it LIKELY that the Endo would continue to thrive.
She winced and shrugged, and was forced to concede that I had a very good point.

Come on, I’ve been researching this shit for years. I told her I didn’t want her to feel like she’d failed me, because she has been the best person for me in all these years – she gave me an official diagnosis. I told her too that I actually DID experience some relief from the pain, in the sense that symptoms for months after surgery did not present as early as they had before.

It’s only this month, six months after surgery, that I’ve begun to have a hard time two weeks before my period again.

I’m sad about this, and my surgeon is also sad and frustrated, but honestly, there’s nothing else we can do because of my reluctance to try another hormone therapy. I’ve still yet to try acupuncture, and I’ve still yet to listen to the health counselor I’ve hired. So there’s changes on my end that I know I need to make, that I’m not living up to.

I’ve been keeping post-it notes of my symptoms and forgetting to type them up here. So here they are all at once:

August 6 – 8, 2007: light pelvic pain
August 8, 2007: dull upper thigh pain
August 15, 2007: intermittent prickly sharp cramps in the front of my pelvic region/uterine area. Painful ankles and calves due to bloat.
August 16, 2007: pain in thighs/knees/ankles due to bloat. Onset moderate low back pain, requiring Ibuprofen.
August 17, 2007: constant checking – feels like george could be here at any second. Very tired. Intermittent moderate low back pain.
August 19, 2007: severe nesting and restlessness – george is about to arrive – I vacuumed and swept and did dishes and laundry. Later in the day, my back from neck to waist locked up, bracing for the coming george pain. I took a muscle relaxer. Constant checking – why isn’t george here, yet? Mild to moderate intermittent pelvic cramping.

As I type, the back pain is getting worse, especially in the shoulders as they try to compensate for the internal swelling and inflammation that is slowing setting in at the lower part of my back and pelvic region.

My masseuse told me that for years even after she got a hysterectomy, her body went into this cycle every month like clockwork. She had to reprogram her body to make the muscles aware that they no longer needed to go into protective mode anymore!

Going back to my health counselor – she’s been trying, really she has. I saw her two weeks ago and she made me a batch of lentil soup. It was really good and lasted for three servings. Alas, I have not lived up to my end of the bargain – I continue to drink until drunk with my friends. I continue to not get enough exercise. I continue to eat junk food.

Having Endometriosis means I am at a slightly elevated risk for cancer of the ovaries, non-Hodgkin’s lymphoma, and endocrine and brain cancers, according to Dr Anna-Sofia Berglund.
I’m already in a higher risk pool for endocrine cancer because I had acute pancreatitis with gallstones in 1993 after having been on antibiotics nearly every month for a year. I was always sick with sinus infections because I was working with children and my immune system is not stellar.

Drinking alcohol severely increases the risk of another attack of pancreatitis, and if I go chronic, I am also highly likely to develop pancreatic cancer, according to what I’ve read out on the Internet.

So..double whammy. I NEED to get my shit together and STOP drinking alcohol. Further, I NEED to ask my health counselor this week if she can help me do a gallstone flush – perhaps that will help lessen the pain of Endometriosis?

Sick of it

I spent all of Friday evening and all of Saturday on Tylenol 3 and a heating pad for the pain – just like old times. I was ok Sunday until late afternoon and then I needed more Tylenol 3 for the pain. I went to bed with a heating pad.

I needed a total of 2 Ibuprofen 800mg pills to get through the workday yesterday, and I struggled through work today on 1 Ibuprofen 800mg pill because I ran out of my portable stash. As soon as I was on my way home, I popped a Tylenol 3. My arms and back felt like they were going to seize up on the way home, because I’d been steeling against the pain all day, so I popped *another* Tylenol 3 when I was just minutes from home.

Since Friday night, I’ve been bleeding like a stuck pig. Again, just like old times. I’ve even had the shooting anal pains.

I only had ONE month free of george since surgery.

I am NOT going to try out any other hormone pills. Call me stubborn if you like. I can’t go through the mental anguish again. In my heart I *know* all hormone pills will affect me the way Loestrin did in 1990 and the way Yasmin did in 2007.

I called my surgeon today to let her know I’m no longer suicidal, but that all the old pain is back. I asked if she would give consent for me to join the Oakland Cannabis Club for medical marijuana (you need doctor approval to join). She refused, citing she doesn’t know the long term effects of Cannabis or if it actually helps one with medical issues. Great, so she’s in that camp.
She recommended accupuncture. Ok, fine, I’ve been saying I’ll try that for the pain, too.

I’m so sick of this. I don’t want to be a hospital patient all my life. I’m tired of doctors. I’m tired of being sick and I’m tired of the whole world knowing when I’m on my period because I have to explain *why* I’m doubled over or missing work or having to go for surgery or can’t go out with friends or I’m stoned silly on Tylenol 3.

Many years ago, when I was still a teenager, I didn’t tell people I was on my period. I just told people I was in a lot of pain if they asked what was wrong. People to this day can’t see a physical reason for my pain – they just see me suddenly steeling against it. And to this day I don’t tell *everyone* the reason for my pain, because I feel some people are too easily squicked by details or are too Midwestern or Southern, if that makes sense. People who don’t want to know about it because females don’t talk about such things.
I can usually tell the type and adjust my reply accordingly if someone asks if I’m okay.

I’ve noticed though that whenever I *don’t* tell people I have a medical condition, that they get a look or an air about them that says I’m some kind of drama queen to be expressing pain in public without a physical open gaping wound of some sort. I’ve noticed the same judgemental reaction for years from people if, when they ask what’s wrong with me, I reply with something like, “I have pain – it’s too much to go in detail about.”
Instantly, I’m a drama queen.

But it IS too much to go into detail about.

General people on the street don’t want to hear a fecking story – most of them don’t have much of an attention span.

General people on the street also don’t want TMI. They don’t want to know that “it’s a girl thing”.

In all honesty, strangers and cow-orkers don’t ask if I’m okay because they care. They just want me to stop looking painful or unhappy and therefore causing drama.

If I sense someone actually does care, I’ll tell them about Endometriosis.

The director of the department I work in, for example, wanted to know the reason for my surgery, and expressed genuine concern. When I told him, I found out his wife also has Endometriosis. He asked how I was doing today and I was honest. He looked concerned. He understands because his wife goes though it. He told me to hang in there.

I’m not a terminal patient. I’m not in 24/7/365 pain. But once a month, I’m screwed for five to seven days at the least. I miss work for up to 3 days every month because of the pain. I get moderate pre-menstrual pain for up to a week before the actual bedridden pain. The pre-menstrual pain is not enough to make me miss work but it’s enough to have me take 600-800mg of Ibuprofen and be really uncomfortable.

My entire life is affected by this disease. I went on an exclusive women’s group 66-mile bicycle ride in 2002 and the disease hit me smack in the middle of the ride. I’ll be having a lovely intimate evening with my man, only to end up crying from pain associated with this disease, and it doesn’t matter what time of the month it is – the disease makes sex painful.
The disease is always with me, even if it only makes me bedridden for up to 3 days a month.

I am feeling very pessimistic about the next few months. I’m told that the first couple of months are or could be bad because I’m still healing from surgery. But I don’t believe anyone. I just think george is back. Although the surgery was hugely beneficial in providing me with a diagnosis, I don’t feel it SOLVED the problem even on a temporary basis.

I feel like the woman who felt relief for a short time after pressing charges on her abusive husband, because he was confined to jail. For a short time, she tasted sweet life again.

Now he’s out, and he’s just forced his way back into the house, and the wife is again being beaten.

I feel beat down by george. I feel like he’s won the game – that he’s not going anywhere. This disease is laughing at me and beating the shit out of me.

I mostly believe in reincarnation. I believe from time to time that I’ve given myself all this shit in life for a reason, and that I’ve got to survive it for that same reason in order to get to the next spiritual level – to have a better life next time around. Striving for that spiritual lottery jackpot as it were.

Today, I don’t believe in reincarnation. I don’t believe I asked for this disease. I feel like a victim. I feel I do not deserve this. I feel angry. I feel powerless.

…but I keep fighting.

I’ve just asked my masseuse for accupuncture referrals.

I guess that’s the next step in pain management, along with getting off my ass and getting to a regular yoga class.

I want at least ten pain-free years before menopause sets in.