Tag Archives: chronic illness

Ask Endochick: Supporting a Spouse With Endometriosis

Steve asked: How can I best support my spouse who has endometriosis?

First, let me thank you, Steve, for an excellent question; and secondly, for being so patient with me. Steve is a regular reader. He e-mailed me with this question, and it’s sat  my in box collecting virtual dust since. Steve, it’s been my hectic schedule keeping this post at bay, not your question.

I asked if any readers could lend some advice.. So before I get to my answer, Margaret has this to share (Thanks!!):

 Steve could get a copy of Dr Andrew Cook’s book : Stop Endometriosis and Pelvic Pain, what every woman and her Doctor need to know …. It has much information on supporting a patient with Endo. Even some comments from our patient’s spouses.

Now, to  the heart of the matter…

1) The #1 thing  you can do for your spouse/significant other who has endometriosis is just be there. Stand by her side through every cramp and mood  swing and hormonal treatment. Don’t trade her in for an unbroken, slightly newer model once the going gets tough; she’s not a used car.If she can’t have children,  you as a couple can’t have children. Don’t ever blame her for biological war that’s being waged inside her body; believe me, we get drafted into a battle zone.

After running this blog since 2006 and interviewing women whose lives have been devastated  by this disease, there are two groups. One  group has supporting partners, the other doesn’t. I have received e-mails and comments, and conducted one-on-one interviews in which women have related how their significant others have left them for a “healthy” girl, or broke up in the pre-op suite(!), or got another woman pregnant and placed the blame on his wife’s endometriosis… and it can go on.

I don’t hear those stories from supportive, present significant others. Instead, women are not afraid to share their symptoms, their pain tolerance, reactions/medication side effects and feelings. For those with chronic conditions,  communication in  relationship is important; but for women with endometriosis, and the significant others who  love and care for them, it is vital.

2) Familiarize yourself with The Joint Commission’s “Speak Up!”™ steps for patient safety and empowerment. Then have your loved one read them. See my post on this subject: “Speak Up!”™https://endochick.wordpress.com/2010/01/14/speak-up/

3) Encourage your significant other to do for her self. Yes, there will be certain times of the month, or after surgery – or even if she’s reacting badly to a medication, when she’ll need to lean on you. But too much of a good thing here can breed resentment. Again, be honest about your feelings and have an open dialogue – even if the situation cannot be changed. And never assume because she relies on you, perhaps more than you normal, that her pain is not. Perhaps a visit to a better doctor is in order because her pain or symptoms may not be adequately controlled.

4) Take care of yourself. Take some time each day for you. Feed your body nutritious food. And keep your stress down. Watch for signs of depression and ill health, and do not ignore them.

 

 

 

Advertisements

Staying Over

I’m currently on holiday. Of sorts, that is. I’m with family. Staying at family’s house.

Don’t get me wrong, though, I’m actually enjoying my stay. Well, 80% of it.

1) Having to tote my own food due to dietary restrictions is a pain.
2) Not having access to my at-home comforts (heating pads, warm baths, etc.) is rough.
3) while I love staying up late playing games, laughing and hanging out, I know my body will pay for this later.

It’s a weekend getaway. So I’m hoping my fumes will hold out. I’m heading home in the morn’. Then I have at least one Ask Endochick post planned for tomorrow.

Unless I’m too exhausted to type.

Endometriosis Awareness Month: Where did March go?

March is practically over with. Isn’t it? 

Wow. 

Where did that go??

I remember in 2009, Jeanne from Chronichealing.com and myself were plastered on Twitter (#marchbloggingmadnessforendometriosisawareness) (can that win a prize for longest Hashtag, or what?). We were posting every day. Retweeting and being retweeted by the minute. Things looked promising for our quest to bring more awareness to this silent disease. 

And despite issues that forced us from using the Twitter medium, we really made some headway. 2009 was brilliant in that respect. Globally, endometriosis was getting a voice. And for those us of who have it, it no longer was being referred to as a mere painful time of the month issue. 

Since 2009, our voices are still being heard. Various media outlets have heard the call. They are doing stories and writing articles. But we still have a hurdle to jump over. Don’t we? 

I am still finding the occurrence of misinformation popping up in my Google feed. Women still leave messages on this blog on how they were misdiagnosed, under-treated, or ignored by the healthcare establishment. There are still uniformed or misinformed spouses, partners, co-workers, bosses, friends. 

In a time where we can connect globally via e-mail, Facebook. Twitter, Google+, blogging, and chat rooms, there are still women struggling alone in this. There are still loved ones clueless to help.

So I am leaving Endometriosis Awareness Month 2012 with a question, a question that will be addressed in my book. 

Where do we go from here? 

 

Video

Lily Allen – Who’d have known

It’s 5 2 o’clock in the morning… This pain is getting boring… I should be bed soon… but I’m not sneaking to my bedroom… so I thought I would just wait here… while I wipe up my tears…

Alright. You’ve called my bluff. That is not the words to Lilly Allen’s first verse.

It is how I feel. There is a symptom – a serious one –  that doctors don’t inform their patients about when they receive an invisible illness diagnosis. Isolation.

Thanks for the Internet, and all the glorious blogs, chat room, forums, and Facebook and Twitter, we don’t have to feel alone all the time. But when we are in pain, it is easy to hide back into our turtle shell. No one can tell us how the pain should feel, or even if pain indeed exists. Under our shells, we can quietly deal with our pain.

Doing so, though, makes the isolation deeper. That’s never a good thing.

Right now, I feel a cloud of isolation and desolation hovering over me. The ominous presence mocking the parts of me that want to be happy. That want to enjoy life as other people do who are pain-free.

Right now I want to sleep. I can’t.

Right now I want to be in dream land. I’m not. 😦

At least there is YouTube and endless of “get your butt in a better mood, girl” music. It’s not working very well right now, though.

Go ahead… ask Endochick

First, to the readers who have been posting me lately with no reply, I apologize. I have been AFK on business and need to now check back in to virtual reality. If “checking in to virtual reality” is something a person can do…

Anyway. Formalities aside…. I would like to celebrate my years of blogging and helping women by giving back.

I will be working on a series of posts based on reader questions. Submit them to me via e-mail or comment on this post. It is that simple. Do you have questions about treatment options, navigating health care… endometrisos, chronic pain, or caring for someone with a chronic condition? ASK!

And the best questions may make it into an even cooler future venture of mine… shhh… spoilers.

Get this post out there. Tweet it. Retweet it. Facebook it. Digg it… whatever.

Trigeminal Neuralgia Attack

Lightning ripping across my face. The red-hot burn, sizzling in my jaw. The tic that’s tacking it’s way from inside my ear to the corner of my eye…

This description fails to capture how severe trigeminal neuralgia pain can be.

Trigeminal Neuralgia “is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the largest nerves in the head.  The disorder causes extreme, sporadic, sudden burning or shock-like face pain that lasts anywhere from a few seconds to as long as 2 minutes per episode.  These attacks can occur in quick succession. The intensity of pain can be physically and mentally incapacitating.” (National Institute of Neurological Disorders and Stroke)

I have been living with this condition for years now. It’s been had been 7 months since my last attack. Then yesterday morning, while I was heading into the breezy spring weather, the familiar shock of anguish rippled from my ear to my jaw. Rapid, and I held my breath, yet it returned. Repeatedly, the waves of gripping sharpness coursed through the right side of my face.

I’m on day 2 of this attack. I have no guarantee how long it will last, or when it will reduce in severity. I wish I knew. My diet is consisting of soft, mushy foods so I don’t have to chew. And my talking is being reserved by vital and urgent replies. Those who are familiar with my usual chatty self find it both troubling and relaxing not to have me yapping.

My Baclofen was increased. This pains me because it took nearly a year to convince the Neurologist to decrease my dose. I put in so much time and effort only to feel like a failure. The trigeminal neuralgia wasn’t really gone, it was just hiding, waiting to jump out and bite my bum when I least expect it. 😦

The worst thing about this disorder is the unknown. I never know when I’m going to get a flare up. I never know how bad it will be or how long it will last. And being that way, it seems to have the upper hand. And I hate this! I hate living in fear during and right after an attack.

Or losing sleep…

Why we need awareness #6

Three years ago I sought the advice of a trusted, and seemingly competent, gynecologist. The pain was well over 20 on a 10-point scale, and like many women I’ve heard from over the years, I had “given up”. I was done! I wanted this busted uterus gone from my body. I wanted those blasted, estrogen producing ovaries out of my body. And I wanted, more than anything in the world, for this endometriosis to stop cursing me with monthly agony. I just wanted to be free from being chronically ill.

It was at the consultation when my physician’s nurse practitioner closed the door gently behind her and asked me, “is this really what you want?”

Of course it was! I begged for this! I pleaded and screamed and kicked my feet until I found a gynecologist who would do this surgery on someone under 40. Was this lady daft?

She must have taken my look of “wtf?!?” to mean I was unsure. Either that, or she just didn’t care. She was looking out for her patient and holding true to the first tenet of medicine  -“first, do no harm”.  I remember her heavy sigh as she took my hand in hers and said, “you should not get this hysterectomy.”

Who was she?!?! She had no clue about my pain. She had no clue how this affected my life. Then she said, “I have been where you are now and I have seen the other side. It is not one to walk down lightly.”

She proceeded to recount her experience with endometriosis. Her tale was strikingly similar to my own, and to many other women with the disease. Years of heavy, painful periods. Days spent sitting out of life, clinging to heating pads and pain reliever bottles. Treatments tried and failed. Being a spectator in ones own life.

She then told me that having a hysterectomy was akin to buying another used car when your previous junker has clunked out. With your current car, you know what you’re getting. You learn to know its noises, and how to get it started even when it makes that “put-put put ” sound or smoke bellows out the exhaust pipe. But when you trade it in – for a hysterectomy – there can come all these new problems – problems you couldn’t conceive of. And there is no Lemon Law. They can’t graft back in your ovaries – your uterus. There is no turning back. And you could awaken in that recovery room  a miserable mess. And she described the sudden loss of estrogen – like going 80 and slamming on the brakes.

And hormone replacement therapy increases the risk for heart disease and cancers. And one must weight the decision to have a hysterectomy with the possibility of life without estrogen.

I left her office that day confused. I took a long, hard look into my life with endometriosis. A very long look. And I came to the realization that my endometriosis – much like an old car – is predictable. I’ve lived with it for so long I know how it acts, when it acts, and how to mask it. I know what works, what doesn’t, and what my body will not handle. And I made the personal decision not to cross into the unknown frontier. No thank you Captain Kirk, but I will not be going boldly where others have gone before.

And I stress, this is a personal decision. Some cases may warrant a hysterectomy. This is something for you and your physician to work through.

But we need more awareness as to the myriad treatments available. I was told Nuvaring failed, BCP failed, the shot failed… time for surgery. They gave up and I almost gave up on my self.