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. 






Would You Save A Life If You Could?

Having a chronic condition rules many out, but consider this if you’re healthy. Do something with your time here… stomp, don’t tip-toe.

Go Light Our World

You can. And it is easier than you think.

Life changes quickly. It’s cliché, but true. I was a really healthy guy who took good care of my body, mind and spirit. I took advantage of my company’s free annual health clinic and made sure my blood counts were all within normal levels. Two months after one of these tests I was diagnosed with AML, in my case an aggressive form of Leukemia. Chemotherapy rid my body of the cancer within two months, and twenty or so blood and platelet transfusions kept me alive during that time frame. But my prognosis was such that only a bone marrow/stem cell transplant offered a good chance of a cure.

A 19 year old man who doesn’t know me made a decision to be a lifesaver. He did so by joining the national marrow donor program and giving up some hours of his…

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Cancer Won

My loved ones fight ended today. Their battle with leukemia and all its nasty treatments (and being miserable from the side effects) has ended. For that last part, I’m happy. I’m relieved. Watching them suffer was not easy. But they are missed. And they will continue to be missed because they were greatly loved, and they loved greatly. 

Cancer hasn’t touch my life, it’s stomped on it. Repeatedly. It’s time I stomp back. 

Leukemia Sucks

Someone very close to me has been bravely battling leukemia for over a year. They did chemo and the cancer went into a false remission… for all of three months! They turned to an experimental drug protocol, and finally radiation. But now they’ve stopped all treatments.

There are so many emotions… I can’t even begin to form them into complete, coherent sentences. Just…

Leukemia Sucks

Cancer Sucks

It Shouldn’t Bother Me…

I get comments addressing the “writers” or “you guys,” or “this forum,” and I have to keep repeating myself… I’m a “me.” This blog has one author, one moderator. Perhaps I’m being a tad overly sensitive, but this is my blog. These thought and feelings and experiences are mine, and I own them.

And now I will blame hormones for this rant and move on.

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.