Wednesday, February 11, 2015

Endometriosis IS and IS NOT

I know I'm not a doctor or an expert on endometriosis but I just want to share some IS and IS NOTs with you about it. I just cringe inside when people say oh yeah I know all about endometriosis and don't. I'm not claiming that I know everything about it either by the way I just want to help people who are not familiar with this disorder have a better understanding of it. 

The best way to start is with a simple definition which I got directly from the Mayo clinic website
  Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant).  
and because I also have adenomyosis the definition from the mayo clinic website is
      Adenomyosis (ad-uh-no-my-O-sis) occurs when endometrial tissue, which normally lines the uterus, exists within and grows into the muscular wall of the uterus.
As simple as those definitions seem after reading them a million times personally, doing research and looking at pictures of both of these disorders I can finally wrap my head around it. Another way I explained it to someone recently was this "endometriosis is tissue growing on the outside of my uterus. When you cycle you shed your uterine lining and that happens to me too but at the same time I am also bleeding internally (the endometrial tissue thats already built up) and it is rebuilding on top of itself on the outside of my uterus. It just gets thicker with every cycle. It is tissue building on top of itself every month. " Not sure if that helps with an understanding of it better or not but for the particular person I was talking to it seemed to help her make more sense of it. So here are my endometriosis IS/DOES and endometriosis IS NOT/DOES NOT based on peoples misconceptions I've encountered so far. Most of these are things I've learned from my doctor directly others are things I've learned through research. 

Endometriosis IS NOT cancer.

Endometriosis DOES NOT mean that I can't have a baby.

Endometriosis DOES/CAN make it more difficult to get pregnant. It depends on the severity.

Endometriosis IS "dormant" when you are pregnant and is temporarily suppressed due to the change of hormones.

Endometriosis DOES come back after having a baby and in my case grew rapidly. 

Endometriosis DOES NOT discriminate. Women of all ages, shapes, sizes and demographics can develop endometriosis. Although menopause generally puts an end to it. 

Endometriosis IS manageable but there is no cure. The method in which it is treated depends on each person individually.

Endometriosis IS one of the leading causes of infertility in women.

Endometriosis IS NOT the same for everyone. Just as any other disorder it affects each person differently. Even though symptoms are the same and treatments are often the same everyone deals with it differently due to pain tolerance, severity, etc.

Endometriosis IS more likely to appear in women with a family history of endometriosis.

Endometriosis DOES NOT always show symptoms. Some women don't know they have it until they are having trouble conceiving.

Endometriosis DOES NOT mean that a hysterectomy is necessary, it is only a last resort if other treatments don't work. (PS I don't even want to discuss me having a hysterectomy with anyone because it is not in my consideration zone at this point. Baby first, long term later.)

Adenomyosis IS a little more tricky than Endometriosis.

Adenomyosis IS treatable but there is no cure. Surgery is not a treatment option if you want to have more children.

Women who have had a c-section or other uterine surgery ARE at a higher risk of developing adenomyosis especially if they have or have had endometriosis. 

That is all the "facts" that come to mind right now about these two disorders that I am currently battling. Please remember that I am not a medical professional so these are all things I have learned second or third hand. You can't hold me responsible for miss information! ;) You can share what you know or help clear up any other misconceptions about these disorders though. I'm all about learning new things especially when they pertain to something I'm battling!

My lupron update: tomorrow makes one week since I had my first injection. I am feeling really great right now. I have had a few headaches but they seem more like allergy headaches than anything and go away with tylenol or an allergy pill. I'm not even considering them lupron headaches! I have been feeling a little bloated the last two days which I'm hoping will go away in a few days when I get my diet back on point. If not I guess I will just wear clothes that don't draw attention to my bloat. Seriously though there are worse things in the world! I said to my neighbor this week that I have the internal body of an old woman but the external of a young one. Working on getting my insides back to functioning like a "young" woman again! 

Seriously though that's some major bloat post eating. 

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