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I'm a TLE patient/grad student in psych, w/ paper on sexuality focusing on epilepsy impact...but all academic data is on men!!!

Hey everyone,

 So, in all the databases I have checked, most issues on the actual impact of epilepsy on a person's sex life have mainly tested men and few academic journals in neuroscience have studied women other than to report irregular periods and sometimes difficulty with the big O....

I'm a graduate student graduating soon with my master in psychology with the hopes of getting into a doctorate program in neuropsych.  I lost my dance career a few years ago when I developed epilepsy at 25 and after failed meds, I had a temporal lobectomy exactly three years prior to the week of my graduation in May (I was in ICU when my parents had flown in and brought me the acceptance letter from my local apartment.)  I also work part-time for the Epilepsy Foundation doing a lot of event planning and fundraising.  I still have auras at times, (especially times like now when I stay up all night trying to write papers!!!), and am still on Keppra, but the surgery helped immensely (after I finally accepted the idea of having it...I was pretty resistant for awhile!)

Anyhow, with all the access I have to academic journal databases, I cannot seem to find articles on the direct effect epilepsy has on women and their relationships, particularly when it comes to the physical components.  Frankly, there aren't many stories on romantic effects in general, other than the fact that most of us become very lonely and depressed.  Those articles tend to reveal the same kind of things looking up "depression and sex/romance" would.  I completely understand what that kind of weight feels like, and have talked to a couple friends, but it's crazy how there are no big trials and not even many personal accounts.  If anyone is willing to just give me any insight that I could add, I actually met with a well-known therapist in the area who works primarily with the families of those affected by epilepsy and she was telling me how sad it is that there is not a whole lot of research on women's issues with romance/sex; anything related is usually on the impact of epilepsy on pregnancy and hormones, which is extremely important, but being in in a Human Sexuality course, our final assignment was simply to write a paper on ______________ and sex, so I chose epilepsy (of course!) only to be surprised that even in the most established journals I found so little!

 It is due tomorrow, but I have a feeling I am going to continue the research post-graduation, so if anyone has anything they care to say, I would be grateful!  I completely understand if people are not comfortable here, and I'm not asking for anything graphic.  I am basically covering so many subtopics on the  impact of epilepsy on sex and romance that does cover hormones and pregnancy, as well as depression, stigmas, religion, varying cultural viewpoints (my friend with TLE told me her divorce was actually a result of her ex's family's interpretation of her condition and his failure to elaborate and clarify with them to the point she was viewed as less than human in their eyes and that took its toll), to side effects of meds, confidence, lack of desire, you name it.  But please, feel free to reveal any insight you mmight have.   I am so happy that epilepsy is finally getting a little more attention in the mass media, but we have a heck of a long way to go!

Many thanks!  RM

Comments

Re: I'm a TLE patient/grad student in psych,

This would be a wonderful dissertation project. I'm a psych prof and psychologist...and I have chaired many a dissertation! I don't personally struggle with any physical side effects sexually, but for me, I think it's much more emotional. It's hard to want to be close to my husband when I feel that broken. It's not even so much about what I believe he thinks because he's amazing, but more about my own psychological projections and fears. Although I am lucky, I guess, in that my seizures are about 2 years apart and only if I forget to take my meds or have too many of my triggers not being managed, they are tonic-clonic....and they are terrifying.

So really, for me, it's more emotional. But I do think we need to consider the side effects of our meds...they ARE mood stabilizers as well, and we take large doses to control the seizures usually.

I'd love to find a therapist who specializes with people with epilepsy! You're very lucky. Good luck in all you do. Great topic to explore in research.

Re: I'm a TLE patient/grad student in psych,

Hi CMzampitella,

Doing a quick search again for "2013 epilepsy sexuality" in google books, a newer book popped up:
"Epilepsy In Women", edited by Cynthia Harden, Sanjeev V. Thomas, Torbjorn Tomson, (March 18, 2013).
The Table of Contents certainly isn't limited to sexuality per se (one limited search results), with Chapter 2
on "The Social and Psychological Impacts of Epilepsy".
http://books.google.com/books?id=EgY7Xc8muAEC&pg=PR4&dq=2013+epilepsy+se...
(page 12 at amazon-dot-com search for "brunt of social")

http://www.google.com/search?q=2013+epilepsy+sexuality&btnG=Search+Books...

The book "Epilepsy In Women" only returns a search with 3 results for "temporal lobe epilepsy" (at amazon-dot-com preview, 13 results books-dot-google), while temporal lobe epilepsy has the greatest correlations with sexuality phenomena, as many references similar to the ones I cited about mainly TLE at http://my.epilepsy.com/node/1000724#comment-1056070

The book "Seized" by Eve LaPlante is one of the most reader friendly, with preview at amazon-dot-com.

Tadzio

Re: I'm a TLE patient/grad student in psych,

The Epilepsy in Women is a FANTASTIC book. I actually thought of that today after thinking about this topic during my errands today. It does talk about sexuality in women with epilepsy. Go for it!

Re:

I know I'm late to the party, but you did say this is a topic that you'd like to pursue for further research...

TLE patient as well and a psych student with an interest in abnormal psych (undergrad with a minor in soc)

I'm newly diagnosed as of last week at age 26. I'm also (happily) married, and have been for 3+ years, 7+ year relationship with a 4-year-old son. I can say that since my symptoms and health issues started popping up, there has been a significant change in my sex life. Loss of libido, lack of self confidence, stress (body, mind, work, child, school), medication shuffling, appointment scheduling, and a variety of other factors have all played a role in negatively impacting my regular sexual activity.

I would be happy to answer more questions. I'm not easily embarrassed either, kinda clinical...

I'm not sure, exactly, what it is you are looking for. Physical barriers, psychological issues, partner rejection, medication interference, day-to-day struggle, all of the above? Have you tried a few different sample surveys? Not terribly reliable, but a good start for getting a pool together at least.

As for my own research, my interest in epilepsy/psychological disorder co-morbidity has been piqued. As it turns out, there is a wealth of information on the topic. You may find something within that pertaining to sexuality.

sexuality focusing on epilepsy impact

"Not all depression is created equal: sex interacts with disease to precipitate depression"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639119/