A Christmas Catastrophe: How Getting Lost in the Medical System Strains My Sanity And Hurts My Care

chronic christmas (1)

A day in the life of an angry advocate:

I barely slept last night because of endometriosis cramps. They assaulted me early this month and that’ll makes Christmas harder thanks to the painsomnia.

I called to cancel an appointment with my GP today as result. Brain fog and pain flares don’t result in productive meetings. We were supposed to talk about lowering and re-organizing my medications because I am about to start fertility treatments. I want to find the safest possible combination at the lowest reasonable dose.

Shouldn’t this be done by my pain specialist?

You’d think. But I get shuffled between my GP, OB, Pain specialist and fertility doctors instead. No one seems to want to pre-plan with me. I still don’t know who to call or what I would do if my pain spiked or my insomnia made me entirely sleepless during pregnancy.

My pain specialist has been busy focused on nerve blocks vs nerve ablations for my pelvic pain. That’s important. But he keeps deferring the medication chat until the next appointment. Which is always months away.

He’s too busy.

To make matters better, I’m playing broken telephone with the pain clinic office. They gave me an appointment time to follow up from an October nerve procedure but apparently never scheduled it. When I called to confirm and found there was no appointment, they told me the next availability was in six weeks. Great.

Then I realized not only would the medication chat happen too late, but if I waited to book my next nerve block until the Jan 21 appointment , then the procedure would have to wait until the spring because his schedule would already be full by then.

So I talked to the pain nurse earlier this week and asked to get the nerve block on the books asap. Two days later I got a call saying a completely different procedure (nerve ablation) was booked for Jan 22.

Are you for real?!? So I wrote an email to him sharing the results of the last procedure and all of my questions and thoughts, since that’s the only follow up from my surgery I’m apparently going to get.

I called my OB-GYN for help. She told me to contact Mother Risk (“an  information service providing up-to-date information about the risk and safety of medications and other exposures during pregnancy and breastfeeding”).

I’ve already done that. 3 times. But I have yet to sit down with a doctor to discuss their advice.

MotherRisk says it’s unlikely my medications will cause birth defects. As a result – and I’m not making this up-  my OBGYN and nurse practitioner asked, in that case, WHY I WOULD WANT TO TRY LOWERING MY MEDICATIONS?

Are you f&*!ing kidding me?

Because the less I take the better? Because if one is slightly safer than another, I’d rather take more of that and less of the other? Also, similar organizations to Mother Risk in the US and UK do identify increased risks with two of my medications!

To top things off- Surprise!- my period came two weeks early. I’m having a normal 30 day cycle for the first time in a year. My usual 44 day cycle is how I got my PCOS diagnosis. So now I am beginning fertility drugs just in time for Christmas, with all the joyous side effects.

So basically, HO.HO. HO.

Humbug.

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A Tale of Two Types of Laparoscopic Surgery to Treat Endometriosis

A TALE OF TWO TYPES OF LAPAROSCOPIC SURGERY TO TREAT ENDOMETRIOSIS

 Learn about the most effective type of laparoscopy for endometriosis.

Last summer I had an appointment with my OB-GYN to figure out the next step for treating my internal pelvic pain, which she suspected was caused by endometriosis.  The pain had significantly ramped up in recent months and was virtually constant.  My OB-GYN recommended having a laparoscopy, which she described as a minimally invasive surgery to diagnose and removed endometriosis lesions that might be present in my pelvis.  I left that appointment believing that there was only one type of laparoscopic surgery to treat endometriosis.

I was wrong.

The procedure I finally had this past winter (after months of waiting), with a type of laparoscopy called ablation or coagulation. During this procedure, endometrial lesions are burned away with a high energy heat source, usually a laser. This is the most common type of laparoscopy for endometriosis. Three months after having the surgery, my chronic pelvic pain has never been worse. Ablation was not effective for treating my endometriosis.

However, there is a second kind of laparoscopy for treating endometriosis, called excision. This procedure is less common than ablation, requires more skill, and is more time-consuming.

“Excision removes endometrial implants by cutting them away from the surrounding tissue with scissors, a very fine heat gun or a laser beam…Excision allows the gynaecologist to separate the implants from the surrounding tissue, thus ensuring that the entire implant is removed and no endometrial tissue is left.”[i]

The most important difference between these two types of laparoscopic surgeries, according to a new study, is that excision is more effective than the ablation.[ii]  Researchers compared three recent studies that examined the outcomes of ablation versus excision laparoscopies for treating endometriosis.  They found that excision laparoscopies, compared to ablation, resulted in:

  • a significant reduction in painful periods
  • a significant reduction in chronic pelvic pain
  • a significant reduction in straining with bowel movements
  • a non-significant reduction in painful sex

The researchers concluded that their review “showed significantly greater improvement with laparoscopic excision compared with ablation” in the treatment of endometriosis. I wish I’d known last summer. Now I’m beginning the long process of being referred for excision surgery.

What I Wish I Knew Before Having a Laparoscopy to Treat Endometriosis

[i] http://endometriosis.org/treatments/endometriosis-surgery/

[ii] Pundir, J., & Omanwa, K. (2017, April 26). Laparoscopic excision versus ablation for endometriosis-associated pain – Updated systematic review and meta-analysis. Journal of Minimally Invasive Gynecologyhttp://www.sciencedirect.com/science/article/pii/S1553465017302637

Acceptance, Grief & Chronic Illness: The Top 4 Ways I Learned to Cope After my Diagnosis

Acceptance Grief and Chronic Illness:THE TOP 4 WAYS I LEARNED TO COPE AFTER MY DIAGNOSISYou probably vividly remember that moment when you sat in a doctor’s office and were told that the explanation for all your confusing symptoms was summed up in a word: fibromyalgia. For some of you, this diagnosis was the first chronic condition you were diagnosed with. For others, it was the second. And for those who had already been diagnosed with multiple chronic illnesses, this one was just another to add to the collection. The reality is that fibromyalgia is one of ten conditions the National Institutes of Health recently labelled Chronic Overlapping Pain Conditions (COPCs ).[1] These include chronic migraine and headache, interstitial cystitis, vulvodynia, IBS, low back pain, endometriosis, TMJ disorders, and chronic fatigue syndrome,  In addition, fibromyalgia is commonly diagnosed alongside autoimmune and inflammatory conditions, like rheumatoid arthritis and osteoarthritis.[2]  Finally, anxiety and depression are much more likely to be co-morbid (found simultaneously) in people living with fibromyalgia.[3]  Many fibromyalgia patients will have the déjà-vu experience of sitting in a doctor’s office and being diagnosed with yet another chronic illness.

I recently relived that experience myself. I sat in my OB-GYN’s office and was told that a recent laparoscopy confirmed that I have endometriosis alongside my fibromyalgia. I told myself that after years of dealing with chronic pain, this was no big deal – same problem, different location. All I needed to do was learn what my treatment options were and then go home and use the self-care skills I have developed over the years to manage my pain. A few days later, while I was examining my incision scars, I broke down in tears. “Get a grip,” I told myself, “this is nothing new“. But as the pelvic pain returned, despite the laparoscopy, and I confronted the reality of dealing with another hard-to-manage chronic illness,  I had to acknowledge my feelings of anger and sadness over this new diagnosis. Intellectually I know that being diagnosed with endometriosis will not change my life as dramatically as my fibromyalgia diagnosis did. I’ve already had to leave my career because of my disabling fibro symptoms. Instead, I stay at home pursuing hobbies, like writing and calligraphy, while I look after my health.

So I wondered, why is this second diagnosis affecting me so much?  To answer this question, I needed to remember what I experienced after my first diagnosis.  As anyone who has had a significant diagnosis knows, you go through a period of grieving afterwards. Grief is the “primary emotional process of reacting to… loss” (Absenger, 2015).[4]  The stages of grief after a diagnosis include: numbness-disbelief, separation distress, depression-mourning, and recovery.[5] While there are similarities to the stages of grief that people generally experience after any loss, the grieving process for people diagnosed with a chronic illness has unique characteristics.  In an article for social workers helping clients with chronic illness, Kate Jackson (2014) explains the difference:

Most often, grief is a reaction to a single, time-limited event… Grief associated with chronic illness, however, is more complex for many individuals.  For people who are chronically ill, the losses are multiple and permanent and therefore difficult to resolve. Because these losses are unending, they’re known as infinite losses.

The scope of losses due to chronic illness are broad and complex, and they can change during the course of an illness.  The loss of health and ability can, in turn, cause losses in a person’s career, social life, sexual function, body image, relationships, parenting ability  and daily functioning, among other areas.  Most fundamentally, these secondary losses caused by chronic illness can fracture self-identity and diminish self-esteem.  The fact that many people with chronic illness feel that their experiences are invalidated by stigma and disbelief can further their sense of isolation.

The concept of infinite losses helped me to understand why a second diagnosis brought up so many difficult emotions. I have had to acknowledge that the grieving process over one, or multiple, illnesses is not a ‘one and done’ kind of thing. Grief comes in waves. If your illness changes, or you develop a new illness, your emotional response will also change because, correspondingly, the losses you experience are new and different. Prior to the pelvic pain that led to my laparoscopy, my fibromyalgia symptoms had stabilized and I had reached a state of acceptance about my illness. I wanted to believe this was a permanent state. I resisted the idea that a new condition would cause me to grieve again (because who wants to go through that once more?). However, I have come to recognize that the losses caused by endometriosis in my life are significantly different than those caused by fibromyalgia.  For me, endometriosis is entangled with my desire to start a family and be a mother, my body image and my sense of femininity. In contrast, fibromyalgia has primarily affected my career aspirations and the part of my identity that was defined by my professional accomplishments.

Once I acknowledged that I was grieving over my second diagnosis, I felt a greater sense of peace.  Resisting these feelings consumed a lot of my energy and effort. Jackson (2014) explains that “people with unresolved grief may experience more profound and difficult-to-treat depression and anxiety”.  Furthermore, the symptoms of a chronic illness can be worsened by unacknowledged grief, including pain, fatigue and cognition.  As people living with chronic illness, I think it’s important that we be on the lookout for experiencing grief when we develop a new illness, or a change in a current illness.  Understanding that grief and acceptance are fluid states can help us be more open to acknowledging grief.  It’s important to seek out support and help once you recognize these feelings. Here are a few tools and resources for coping with grief about your chronic illness, based on what has helped me:

  • Mindfulness meditation: “Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine. The Mindfulness Based Stress Reduction (MBSR) program created by Jon Kabat-Zinn to teach mindfulness to patients had demonstrated remarkable benefits for reducing chronic pain as well as anxiety and depression in fibromyalgia.[6] You can find an MBSR program in your community, or there is a free version online http://palousemindfulness.com/. Alternatively, you can learn meditation using a free app on your phone. Two of my favourites include the Insight Timer and The Meaning of Life Experiment. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi.
  • Cognitive Behavioural Therapy: Studies have found that participating in CBT can help reduce pain, depressive thoughts, and improve quality of life for people with chronic pain.[7] One of the core parts of the program is learning to identify negative thinking traps, or ‘cognitive distortions’.  These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves” (Grohol, 2016).[8] These programs also focus on helpful behaviour changes like learning deep relaxation as well as pacing activities. CBT programs are run in most communities and your doctor should be able to refer you to one.
  • Find a support group, whether in person or online. It can be incredibly powerful to know that you are not alone in facing the challenges caused by your chronic illness. There are private facebook groups for every condition, where you can find support and people with shared experiences. The #spoonie hashtag can help you find other people with chronic illness on twitter. If you are able to, an in-person support group can be an important source of connection if you are struggling. No matter how much support your family and friends can provide, it can help to talk with people who have the same condition(s) you do.
  • Talk with a professional therapist: Unresolved grief is a difficult issue to work through. Many people benefit from talking with an experienced therapist, one-on-one. My advice is to find a counsellor with experience in working with clients who have chronic illness- your specialist may be able to refer you. It’s critical that you ascertain that the therapist validates the existence of your chronic illness and does not tell clients that the illness ‘is all in their head’. Think of the first appointment as an interview, where you see if you are compatible and ask about their professional experience. You may wish to learn more about the therapeutic approaches used by different therapists prior to choosing one. For example, I found that the empathetic, strengths-based counselling provided by a social worker fit much better with my personality than the objective, analytical technique used by a psychiatrist.

Acceptance Grief and Chronic Illness

[1]http://www.overlappingconditions.org/About_COPCs

[2] http://www.sciencedirect.com/science/article/pii/S0025619615002438

[3] https://www.verywell.com/fibromyalgia-comorbid-overlapping-conditions-716184

[4] Absenger, W. (2015). Mindfulness and the Stages of Grief in Chronic Disease. ACEF. Retrieved 15 April 2017 from http://amacf.org/mindfulness-stages-of-grief-in-chronic-disease/

[5] National Cancer Institute. (2014, October 8). PDQ® grief, bereavement, and coping with loss. National Cancer Institute. Retrieved 15 April 2017 from http://www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient

[6] Paul Grossman, Ulrike Gilmer, Annette Raysz and Ulrike Kesper. 2007. Mindfulness Training as an Intervention for Fibromyalgia: Evidence of Postintervention and 3-Year Follow-up Benefits in Well-being. Psychology and Psychosomatics 76: 226-233

[7] Holmes, A., Christelis, N., and Arnold, C. (2012). Depression and chronic pain. MJA Open Suppl (4):17-20.

[8] Grohol, J. (2016). 15 Common Cognitive Distortions. Psych Central. Retrieved on December 15, 2016, from http://psychcentral.com/lib/15-common-cognitive-distortions/

The Mental Torture of Medical Waiting Lists (& How I Learned to Cope)

The Mental Torture of Medical Waiting ListsWaiting.  Before this past year, I would have described waiting as boring, frustrating and draining.  Then I spent 12 months in pain, waiting for a specialist appointment, waiting for tests, and waiting for surgery.  After all that, I’m still waiting for an answer and a solution to my symptoms.  Now I would describe waiting as suffocating, crazy-making and excruciating.  Waiting can become a form of mental torture when your health, daily functioning and quality of life are at the mercy of hospital bureaucrats.

Exactly one year ago this month, I went to my family doctor because of an increase in pelvic pain.  Not only were my periods more painful, but I was experiencing debilitating cramp-like pain more days of the month then not.  My family doctor referred me to my OB-GYN for consultation at Mount Sinai Hospital in Toronto.  I had to wait three months just for an appointment date.  Then, the appointment was rescheduled twice. The office assistant would not call me back, even to give me a rough estimate for when a makeup appointment might be rescheduled.  At one point I even broke down on the phone while leaving a message for the admin assistant. More than anything else, I felt helpless in the face of this mysterious pain that was making my day-to-day life so difficult, with no ability to control the outcome.

Finally, 5 months after the initial referral, I saw the specialist.  We decided a laparoscopy was the best course of action for diagnosis and treatment of suspected endometriosis.  Her assistant told me to call back in two months in order to book a surgery date.  When I called, she told me to call back in another two months.  I called back and left a message.  No reply.  Two weeks later, another message.  No reply.  During this time my pain had spiked significantly and was now difficult to manage, even with multiple pain medications.

I felt trapped.  If I tried to see a different doctor, it would take months for an initial appointment.  If I tried to even make an appointment with the same doctor, prior to the surgery, it would take months.  The pain was making it difficult to socialize, to accomplish day to day activities, to exercise, or to even go on a date with my husband.  I felt angry and anxious.  My mental health was deteriorating.

I’m not alone in this experience. Researchers have found the waiting period can significantly impact the health of patients.  Studies have consistently found negative effects in patients waiting for test results, ranging from adverse effects on recovery times, wound healing times, reduced immune defences, and worsening of side effects from medications.  Researchers hypothesize that these effects may be due to anxiety over test results, which is supported by the finding that waiting patients have increased levels of the stress hormone cortisol. Similar impacts have been seen in chronic pain patients waiting for treatment. The study concluded that waiting for longer than six months caused a reduction in quality of life and psychological wellbeing.

Finally, finally, I got the date for the surgery, two weeks beforehand.  It went smoothly enough.  They found and removed endometriosis lesions.  I struggled through the initial recovery.  One week later, the pelvic pain came back.  Same place, same feeling, same pattern.  Perhaps it is part of recovery, or perhaps the surgery wasn’t the solution.  Now, I have to make another appointment and – you guessed it –wait.

How you react to the stress of waiting for diagnosis or a test result may be partly determined by your personality characteristics.  One study found that a high need for closure -something I can definitely relate to- increases anxiety during the waiting period.  In contrast, if you have a high tolerance for uncertainty, you’re less likely to be anxious.  Do you tend to assume the worst?  This characteristic, which researchers called “defensive pessimism,” also increased waiting anxiety.  If you tend to assume things will work out (“dispositional optimism”), then you are less likely to experience anxiety. Constantly ruminating on the outcome of the test result during the waiting period also increases anxiety.

Interrupt the Flow of Negative Self-Talk

So what can you do you if you have certain characteristics that may increase your stress levels during a waiting period for a diagnosis, procedure or test result?  Firstly, I learned that it is important to interrupt constantly ruminating on the upcoming medical appointment. Try to be aware of your thought patterns and self-talk during this stressful period.  I try to regularly check-in with myself during the day.  If you notice that you are dwelling on the frustration of waiting, acknowledge it.  Then make a deliberate choice to return yourself to the present.  A few minutes of deep breathing or meditation may help to relax you and create space between you and these stressful thoughts.

Distract Your Mind (or, Your new excuse for binge-watching Netflix)

Distraction is another valuable tool.  Decide to focus on something that will occupy your mind rather than ruminating on a positive test result or unwelcome diagnosis.  This might be a good time to re- watch your favorite comedies, because who doesn’t need a good laugh?

Challenge Self-Judgement

When I find myself thinking about how long I have to wait for my next doctor’s appointment, or my frustration at the lack of answers, I find it really helpful to say to myself “OK, here are those thoughts again”.  I’m trying to be accepting of these thoughts, because it’s only natural to be frustrated and stressed in this situation.  But if there’s nothing I can do about it here and now, then I try to refocus my attention on whatever I have going on in the moment.

It’s a daily struggle to cope with the mental torture of the medical waiting list. Negative emotions are natural and experiencing them is not a failure to manage your feelings. That’s a lesson I keep re-learning. I try to see it as a question of what is the most helpful response to the negative emotions, rather than getting frustrated with myself for feeling down in the first place.

Self-Care, Self-Care, Self-Care

It’s very important to practice self-care and stress management during this time.  Activities that have been proven to reduce anxiety include yoga, exercise, meditation, guided visualization, walking in nature, journaling and deep breathing.  Personally I find regular meditation really helpful for my mental sanity.  During this time, it’s helpful to refocus on the fundamentals of a healthy lifestyle, like trying to get enough sleep, eating nutritious food and connecting with your social support system.

Here are few resources for staying present and de-stressing:

References:

Hoffman, J. (2012). The anxiety of waiting for test results. New York Times. Retrieved 10 Feb. 2017 from https://well.blogs.nytimes.com/2012/07/23/the-anxiety-of-waiting-for-test-results/

Lynch, M. et al. (2008). A systematic review of the effect of waiting for treatment for chronic pain. PAIN 136(1-2): 97-116. Retrieved 10 Feb. 2017 from http://www.sciencedirect.com/science/article/pii/S0304395907003442.

Markman, A. (2014). Waiting is the hardest part, but you can make it easier. Psych Today. Retrieved 10 Feb. 2017 from http://www.psychologytoday.com/blog/ulterior-motives/201407/the-waiting-is-the-hardest-part-you-can-make-it-easier