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.

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. 

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. 

 

Ask Endochick: Pituitary Tumors and Endometriosis

Endochick,

  Does having endometriosis cause pituitary tumors?  – L

  L,

While having endometriosis doesn’t guarantee you’ll be diagnosed with a pituitary tumor, or another endocrine tumor, it does increase the odds.

First, some basic background. Endometriosis is an endocrine disease causing aninflammation in your pelvic cavity (and any where else you have implants). Because these implants bleed with the monthly release of  hormones but are unable to shed from the body, the contents remain inside. That’s where they fester, the implants continue too grow in size and depth each month and cause varying degrees of agony.

There’s always a concern that endometriosis may turn into endometrial cancer — or cancer of the urine lining. And while some studies are still arguing whether endo women need to be concerned about uterine and endometrial cancers, a a study out of Denmark says there’s real concern for endocrine cancers. Researchers studied over 114,000 women with endometriosis. They found women were more likely to develop “brain and endocrine cancers, such as cancers of the pituitary or thyroid glands, but a reduced risk of cervical cancer.” according to HealthyWomen.org.

And of special importance:

The Institute of Cancer Research’s Minouk J. Schoemaker published in 2009 that women who have gone thru surgical menopause, or early menopause, are at an increased risk for pituitary tumors. Women with endometriosis often resort to partial or full hysterectomies due to excessive bleeding (menorrhaghia) or unmanageable pain (dysmenorrhea). Shoemaker also found a correlation between women who had given birth before turning 20, and later being diagnosed with a pituitary tumor. He does stress, though, that, they “are usually benign but are associated with substantial morbidity.”

Just because you have endometriosis doesn’t mean you’ll get a pituitary tumor. Tumors of any kind are not something to mess around with. Speak with your doctor about your personal medical history, and chances of getting an endocrine tumor.

** If you experience a combination of these symptoms, see your personal physician. Remember, this blog is for educational purposes only, and is not intended to diagnose, treat or replace your doctor. **

Ask Endochick: Is Topomax Prescribed For Endometriosis?

Dear E, 

I’ve been a long term reader and notice you’ve taken Topamax. Does it help your endo pain? I’ve tried bc pill, Lupron (2 round… NEVER AGAIN!!!!!), and pain meds (doctor strength and from drug store). Running out of options. I know Topamax isn’t a pain med, but neither is Zoloft… And I’ve tried that, too. It help a little but I was a ZOMBIE! Thanks!

Dee Dee

Dee Dee,

Topamax is an antiepileptic medication, used for treating epilepsy, seizure disorder and migraine disorder, neuropathic pain and bipolar disorder. Doctor’s, usually neurologists, may prescribe the medication for other off label reasons. I do know at one point it was used for its weight-loss properties (it can zap your appetite and make food and drink, particularly carbonated sodas, taste bad). But the side effects didn’t make up for the pounds lost. What’s 5-10 lbs. when everything tastes stale, your feet and hands tingle, and you get a kidney stone?

I’ve read of anticonvulsants being prescribed to treat chronic pelvic conditions such as interstitial cystitis and vulvodynia; or conditions aggrivating from the pudendal nerve.

Again, though, anticonvulsants have heavy side effects. Some anticonvulsants even have Black Box warnings. Do your research and discuss medications with your doctor.

Ask Endochick: High CA-125 & Endometriosis

I’m way behind on these, so please be patient as I catch up on “Ask Endochick” posts. As always, if you have something to contribute, leave a comment! You never know who you may help. 

Brooke writes: 

Does the CA-125 test check for endo? My friend said I can do that and not the surgery. I searched and see it also tests for cancer and endo?!?  Will my doctor know which I have?

 

You are not the only one confused. While popular, the belief that the CA-125 blood test is a one-stop shop diagnostic tool (or a way to tell if you have a particular disease) for endometriosis is false. Although, women think a blood draw will give them a definitive “yes” or “no.” 

Above all, CA-125 measures an inflammatory protein called glycoprotein. Cancer causes inflammation, so does endometriosis. Because the blood test measures all available tumor marker in your blood, it can’t tell endometriosis from cancer cells. Unless the marker counter is really high, in which case you’ll most likely be sent to a gynecological oncologist, you’ll be faced with treating symptoms or confirming with surgery. 

A high CA-125 value can indicate you have endometriosis, assuming you’re having symptoms that suggest the disease, like pelvic pain, dysmenorrhea (painful periods) and/or menorrhaghia (heavy bleeding).  And know a low result doesn’t put you in the clear, especially if you’re symptomatic. In the end, you and your doctor may decide a laparoscopy is the appropriate , plan of care.

Going through with the blood test is a personal decision. However, your insurance company may require it as part of the “exhaust all non-surgical intervention” phases before they will approve a diagnostic laparoscopy. 

 

 

 

 You 

 

Endometriosis Edith?

March has nearly slipped the coop. Where did it go? I had to post at least one more time before month’s end, and I want it to be whimsical. After all, if you cannot laugh with this disease, then it is bound to drive you insane.

I once knew a crotchety old man with a bum knee. He swam. He golfed. He took nightly walks around the block. He was just a bit slow, smelled of ointment and rubbed that knee a lot. Peculiarly, he also called it Sally.

“Sally’s gone arthritic.” “Sally’s locked up.” “Hold up, Sally needs rubbin’.”

You get the idea… everyone, from the postman to the corner grocer asked after Sally.

I remembered that man and his silly knee this morning. And it got me thinking…

Have you noticed there is a name for your period? Aunt Flo. I get the context, but Flo is a real female name. Could you imagine naming your endometriosis? Or does yours already have one? Is it male or female?

I’m not sure what I would name mine… or if I even would. Bob? Jan?

Endometriosis doesn’t have an adorable face just screaming its name. Its an insidious, evil; a poisonous alien and your body is nothing but the host.

There. I found my name. Alien.

Connecticut Fertility Clinic to Host Endometriosis Awareness Event: Is This a Good Thing?

Disclaimer: This post discusses infertility. 

Endometriosis Awareness: Mirena – Help or a Hormonal Mess?

This is the second post I’ve written today. Earlier, I typed out a post about endometriosis awareness events, and how this month especially, they frequently occur in medical practices or companies with a partial stake in endometriosis. Perhaps that post will come tomorrow as I feel it could use some polishing.

This Is How It Starts…  

The inspiration for this post — ” Mirena® – Help or a Hormonal Mess? — is thanks to a portion of my recent hormonal blood work arriving in my in-box. All blood work ordered through my endocrinologist, neurologist and general practitioner’s offices become available to me via e-mail once the lab clears them. Due to some recent symptoms and long term endocrine issues I will not bore you all with, my endocrinologist felt it worth running a full hormonal panel. Honestly, when all was said and done, I don’t think there’s a hormone she didn’t check!

The problem is — and we discussed this… at length — the  Mirena® interferes with hormonal testing. Considerably, in fact.

For those familiar with my  Mirena® journey, this part will be old news and I’m sorry. Bear with me for a moment.

For those popping in thanks to a search term (Hello! Thanks for stopping by!), I had my first  Mirena® IUD inserted in April of 2007. I was terrified. After reading Internet horror stories, I had psyched myself into thinking I would pass out, bleed excessively, have a ruptured uterus… whatever could happen, it would pretty much happen. So I reached for two Tylenol #3 with codeine (a prescription pain medication), which effectively numbed any pain I may have experienced during the insertion. I went home, had a few cramps and slept the rest of the afternoon. After some faint spotting and mild cramping, my periods stopped. I only had spotting again after my laparoscopy in 2008. And that was only a few times (due to the doctor moving my uterus to remove adhesions).

It wasn’t all smooth sailing along the way. I had moments where I wondered if the Mirena was causing moodiness and cramping. It did increase my tendency to create ovarian cysts, which can become rather painful. The reason for my 2008 laparoscopy, for example, was due to a cyst that developed on an ovary. We watched it through ultrasound as it sat on my ovary for nearly a year. When it developed into a thick walled septated cyst — the kind that can develop into cancer — it was lap time. Naturally, my doctor was eager to get it out.

Shhh.. the “H” Word… and a New Mirena Comes to the Rescue

Because of my history and my pain level, I felt ready for a hysterectomy. I was already living without a period (this was all menopause was, right?!?! Ha!). What’s the big deal. Thankfully that gynecologist’s office had a nurse practitioner who had had endometriosis and had a hysterectomy at 30. There I sat, a naive but in pain. She convinced me that the better option was to stick it out with Mirena®, or try another reversible endometriosis treatment. And now I am glad I took her advice.

But that brings me to 2013. I am on my second  Mirena®.

The second insertion did not go so smoothly.

As I was saying, my endocrinologist decided to run some hormone panels (read: every single hormone panel know to man). We knew that because the  Mirena® causes your period to stop — or amenorrhea —  many of the lab values could be off. Hormones like follicle stimulating hormone, estrogen and testosterone — to name a few — fluctuate depending on where you are in your cycle. That’s right. They rise and fall in the beginning, middle and end, and differences can signal problems —if you know where you are in your cycle. How am I supposed to know that when a) I don’t have a period, and b) when I did have a period, my cycles were anovulatory. Because I didn’t always ovulate, my periods were irregular, always heavy and lasted — on average — 2-3 days.

So Does the  Mirena® Mess With Hormones? 

Unlike it’s non-hormone releasing cousin IUD, Mirena® releases synthetic progestogen — in the form of levonorgestrel — into the uterus. The manufacturer, Bayer Cross ®, stands firm that only a little bit of the levonorgestrel gets into the blood stream.

Yet,there is an extensive hormone related list on their website of possible side effects. Bayer Cross ® Bayer insists that the following are experienced by 5% under:

Vaginal discharge

• Breast pain or tenderness

• Nausea

• Nervousness

• Inflammation of cervix, vulva or vagina

• Pelvic pain during your period

• Back pain

• Weight increase

• Decreased sex drive

• High blood pressure

• Pain during intercourse

• Anemia

• Unusual hair growth or loss

• Skin irritations (such as hives, rash, eczema or itching)

• Feeling bloated

• Swelling of hands and/or feet

• Expulsion

I have daily search strings for “mirena and endometriosis,” “mirena headache,” “mirena and migraine,” mirena weight gain,” “mirena and acne,” “mirena depression,” and the list goes on. These must be from the IUD’s hormonal component. You do not see this with the non-hormonal IUD.

I do not have a period, though. And as for cysts… while they do hurt, I have learned to live with them. As a wise doctor once told me, “That’s terrible saying you’ve learned to live with the pain.” I told him I didn’t have a choice. I had a life to live and didn’t have time to wait for him to fix me.

So, will I be getting it out? No. As long as it’s keeping my monthly hell away, it’s staying put. Of course, unless my endocrinologist calls Monday morning and says those test numbers are telling her a different story. But then again… like I said… that little thing in my uterus is making it hard for us to know when to test!