Saturday, September 12, 2009

Women's Health Issues and Liver Disease

Since May 2006, when I was diagnosed with end-stage liver disease and was told I needed a transplant, I've experienced intermittent amenorrhea, which is a $20 word that means the absence of menstrual periods. I would have a period for four or five months, then nothing for seven months, and back-and-forth on the same general routine. I spoke with all my docs about it - hepatologist, internist, gynecologist - and no one had an answer and, to my disappointment, didn't investigate the matter further. I dumped my gynecologist, whose response (or lack of it) was the biggest let-down, and haven't yet replaced him because I expect to get the same reaction no matter where I turn.

I want to know WHY. Why, all of a sudden, did I stop having periods when I'd them like clockwork for years? Why did they come and go? Yes, I was in my late 40s so it could be perimenopause symptoms, but couldn't it also be something else, something related to my liver condition? Given the timing I didn't believe it was coincidental.

So I did my own research on the Internet and found one solitary abstract from a medical journal, stating that it was common for women with end-stage liver disease to experience amenorrhea, and after a liver transplant their periods would resume, on average, around five months later. Such was my experience. I shared this with my docs but none of them "took the bait."

So, today I stumbled across a blog post describing some of the presentations made at the Fall 2007 conference of the American Association for the Study of Liver Diseases. On Clinical Correlations: The NYU Internal Medicine Blog, Ponni Perumalswami, MD wrote,
Another important presentation was given by Dr. Terrault who discussed the unique aspects of liver disease management in women. While the authors described a number of important observations, the most interesting were the findings that the risk of amenorrhea is increased in women with cirrhosis...

Dr. Terrault also stated that women with chronic hepatitis C have slower rates of fibrosis progression as compared to men, and that when they are treated for their disease, they are more likely to attain a sustained virologic response. All is not optimistic, though, because during their post-menopause years their HCV disease and progression to fibrosis tends to accelerate. Once these women hit the post-menopausal period, their risk of developing hepatocellular carcinoma also increases.
I need to do a bit more digging and see what I can unearth on this topic. Knowing about and understanding the impact of liver disease and cirrhosis on my menstrual cycle is IMPORTANT TO ME. Without information, I can't cope with the myriad physical symptoms and changes that I deal with on a daily basis.

With more info in hand, it might be time to start looking for a new gynecologist. My fingers are crossed.

Graphic from cdc.gov

3 comments:

PSPam said...

Good information. Thank you for sharing this and YOUR story! :-)

tubal reversal said...

nice blog

Michelle L said...

Oh gosh. I'm not the only one. Thank you so much for this post, and for putting this blog out there. I'm making my way through the archives and it is SO HELPFUL.

My background: I'm a 25-year-old female, diagnosed with autoimmune hepatitis and cirrhosis. This all came out November of last year. I'm on the transplant list, but my MELD (initially 17) has been brought down to 14 through treatment, so I probably have a long wait ahead of me.

I hadn't had a period since I was 22. I'd been getting shunted around to different specialists who ran all sorts of (expensive!) tests, all of them far more interested than I was in why I wasn't having my period. (Yes, I was getting really sick of the whole thing. The brain MRI was not fun.)

After I was diagnosed with liver disease, I did a bit of research and realized my liver must have been the problem the whole time. Ironically, I think the symptom of amenorrhea ended up being a red herring for my doctors-- they were looking for polycystic ovaries and things that would directly cause amenorrhea. No one ever thought of my liver.