Hello, Endo

It’s not that my Mirena is failing, according to the doctor. But, I am exhibiting symptoms that suggest the endometriosis has decided to party in my pelvis, once again.

Endometriosis is that spaz you didn’t invite to the party, of course, but who shows up anyway; the “friend” who always drinks too much and ends up dancing on the table, whilst stripping down to their knickers. It’s Naproxen and a heating pad to the rescue. And maybe, just maybe this time, endometriosis will take the hint, climb down off the table that is my uterus (just stay with me, people), and scram.

A girl can hope.

I’m scheduled for a pelvic scan Wednesday. Doctor suspects an ovarian cyst. It sure feels like crazed friend brought a date to the party. And he’s a wild type.

I’m not a partner, especially when it’s going down in my pelvis. That stuff needs to stop. Now.

From the shadows I emerge… (endometriosis awareness month)

I’ve been absent from this blog since, it appears, September. I neglected to check my Endochick email, as well. This wasn’t intentional, mind you; I’ve been overwhelmed. It wasn’t until today — until a good friend reminded me, actually — that I realized Endometriosis Awareness Month was 1/2 over with (or nearly there). 

March 2009, this blog teamed with ChronicHealing.com for an awareness event that weaved social media and blogging. Over 3,000 tweeters tweeted #MarchMadnessforEndometriosisAwareness. People Facebooked. There were daily blog posts devoted to the disease — from coping with pain, to treatment options, to talking with your doctor, to fighting for a cure. Men and women came together to shine a face on an isolating invisible, chronic illness.

But here I am five years later, too busy to fight the fight. My email — littered with Ask Endochick questions and pending comment notifications — sits unopened for months. And my blog, missing months of posts. I wish I had more time. I do. 

I wish, too, that I can find the time to sit and collect the patient safety data I have. For my ultimate Endometriosis Awareness goal would not be a month full of posts, as it was in 2009. But a navigation guide to keep us all safe in the endo world. 

Until I’m able to post again (and let’s hope it’s not long), keep up the fight! Remember, we are stronger together. 

A Quick Post Re: World Suicide Prevention Day

This is a quick post forwarding you to Jeanne Endo’s excellent post: Today is World Suicide Prevention Day 2013.  

I am hoping to post more of this topic myself later. As regular readers will know, this topic is one that has touched my family. It is also a very common search string for this blog. And that has been a deep concern of mine for a long time. 

I will go into this later. 

Thanks for reading and please check out Jeanne’s post. 

Endochick 

We MUST Persevere

Endometriosis — just like any chronic illness — is a battle; however, the battle with the E beast is unlike standard issue military battles, where generals shuttle troops along the field, call in ballistic strikes from continents away, or rely on media coverage and polling data to determine the next course of action. No, the war with endometriosis is a never ending. Even with the natural decline in estrogen and implant death that comes after menopauses, the emotional and internal (and sometimes external) physical scars remain.

And for the menopause-thru-hysterectomy units, these women have fought their own vicious battle. A battle fraught with early menopause and hormonal supplements. Some women weather the battle better than others, while many return from the war wounded and unrecognizable from their former selves. Depression. Migraines. Lack of a sex drive. Pain. 

We women with endometriosis command the front lines. In our daily lives we are bosses, teachers and police officers… We are important members of a constantly moving, ever-present society. We must be on 24/7, and often pain gets in the way. And yet, when we dare ask for reinforcements, we are pegged “seekers.” Or worse, this daily battle we fight is in our heads. 

Doctors shrug off our pain and downplay the war waging in our pelvis’s. They toss a new strategy to keep the battle going — antidepressants, NSAIDS… the list is endless. But until a covert mission (i.e. a laparoscopy) is ordered, doctor’s won’t invest in the battle. And getting a doctor to sign off on that mission can be near impossible — at least until you’ve exhausted their mini attacks without success.

Even with spy data confirming enemy presence, a doctor will sometimes be cautious in their approach. I’ve heard from various women with Stage IV endometriosis and their doctors prescribe a course of birth control. Only. Two of these women hadn’t had their endometriosis removed during the original laparoscopy. 

Some will say that the endometriosis war is a series of hellish battles. And I would agree. There is the daily battle. It’s wounds are depression, isolation and anguish — beyond the physical symptoms. There is the battle to diagnosis. It’s wounds are frustration (navigating the healthcare system is a daunting tasking — arm yourself with education and backup), powerlessness (doctor’s can be overbearing — remember, they work for you) and uncertainty (new medications come with side effects — keep a journal). Then there is the battle of knowing. It’s wounds are denial (even if you’ve been searching for this answer, it’s normal to question the diagnosis), anger (your body has failed you; doctor’s may have taken years to diagnose you or are suggesting a treatment you’re not comfortable with; or they believe you’re infertile), bargaining (this one applies to endometriosis patients who experience infertility, especially), depression, and finally acceptance.

But the thing about battling a chronic illness is that it’s never ending. And so are the stages of grief. Even once you’ve accepted it, you may find yourself angry that a new treatment failed; or bargaining for another surgery when the doctor insists it won’t help.  

Regardless of where we are in the war, one thing is certain: We MUST persevere. 

We must press for further research and back scientific endeavors searching for a cure. We must write our political figures and insist on protective legislation. We must stand firm and say NO to doctors when we feel uncomfortable about a drug or surgical treatment. We must feel empowered.  

We must win this war. 

Cluster’s Last Stand

American history buffs will appreciate my word play there — Custard/Cluster. The truth is though, I’ve been fighting a demon pain in my eye and temple for weeks. And it’s felt like a Civil War battle, bayonets and minute men and all. All playing out in and around my eye and temple. However, this time around it feels as if the North is losing.

Right. I’m lost in The Patriot with Mel Gibson and Heath Ledger. Let’s get this puppy back on track…

Cluster, if you haven’t guessed, refers to cluster headaches; or, more precisely, ‘OMG THIS IS KILLING ME’ headache. That’s putting it mildly and in P.G. language. I want to keep this blog safe for work and teenagers. 

Cluster headaches are identified as being “one-sided” and, notes Medline Plus:

“may involve tearing of the eyes and a stuffy nose. Attacks occur regularly for 1 week to 1 year, separated by long pain-free periods that last at least 1 month, possibly longer.”

They are miserable buggers. And I’ve had basilar artery migraines, so I. know what I’m talking about! The sudden sharp pain focused by the seemingly endless throbbing is mind numbing. And nothing nothing I’ve taken or done — even ice and Vicodin! — don’t ease the pain. 

Miserable. 

Buying My Dentist a Vacation Villa

Right. Realistically, my tab’s likely not that high.  But, at minimum, he can take a mini-break somewhere cavity free. And why? When anticonvulsants, or seizure medication, such as Topamax and Lamictal, say they cause dry mouth, this is a serious “nuisance” (i.e. side effect) your dentist should know about.

And hint: don’t skip cleanings. 

That, unfortunately, is what I did. Shortly after a couple maintenance fillings, I did my 6 month cleaning and check-up. Everything was good and I made an appointment for my next 6 month cleaning. Then I lost my license until the meds were therapeutic, and I couldn’t drive for 10 months! I was relying on people to shuttle me everywhere. And when my appointment came up, I had just used my ride to shuttle me 2 hours for an appointment with a surgeon the day before, a trip to a specialist three days before that, other random small errands… get the drift… they were not a taxi service.

I remember thinking I’d call for a cab, or reschedule the appointment. But I was on doctor overload, not sure if I wanted to keep my dentist (I had MAJOR issues with his receptionist/billing lady) and so I cancelled the cleaning. I never called back… until I was in pain 10 months later.

I started having tooth pain, and once I could drive, I bit the bullet. I called around and my dentist was still the most reasonable, old school dentist on the block (I need a cavity filled, not a college plan for my mouth!). He understood my absence and need for valium before the procedure. And he’s wonderful with trigeminal neuralgia pain and TMJ.

But I was NOT prepared for the rude awakening two seizure meds can do, unchecked, for 10 months. And I’m nearly vegetarian (occasional chicken), hardly any sweets (occasional bit of dark chocolate at night) and I care for my teeth!!

The verdict: 7 cavities and 1 root canal (but a few of those cavities were deep, and all but one was new!).

Ouch. I will not miss my next cleaning. Everyone, this is the hard truth about medication associated dry mouth.

Ask Endochick: Ice For Endometriosis, Really?

From a Family Member (who has no idea I do what I do, and that they just became ‘a post’): 

“You can put ice on your belly and it helps endometriosis?” 

Now, let me explain why I chose to take this innocent comment and turn it into a post. Nearly every day I have a post from 2009 that gets a hit. Sometimes a few people stumble upon it. Sometimes more. This is usually because someone’s emailed our Facebooked the post. The post then? Put Ice On It?

This was a post where a Twitter follower (back in those days) told me to swap the heating pad for an ice bag. For the record, it works. 

Why? 

  • It numbs the tissue, at least temporarily. Think of it as Lidocaine for your pelvis. 
  • It stops the pelvic nerves from sending pain signals. Again, at least temporarily. 

Alternate cold therapy with heat, which alters the pain signals being sent to the brain (i.e. your brain is focused on heat not pelvic pain), for best results. 

Of course, thermal therapy will only get you so far in treating endometriosis pain. Some people have had great success with diet modifications, medication, acupuncture, and medications. Always talk with your doctor, though, before trying a new medical or diet.