Wednesday, March 14, 2012

Endometriosis Awareness Day 14

This was written by one of my fellow Endo Sisters, Jenny, for another blog. When I found out she was writing it I asked her if once it was published if I could also post it on my blog. She readily agreed so here is Jenny's Endo Story.

"I have been asked to write this post for Meg in honour of Endometriosis Awareness Month. It is a pleasure to share my story about this condition.

Let me first start out by explaining what endometriosis (en-doh-me-tree-oh-sis) actually is. I feel I must point out that I am not a doctor and that this is simply my (fairly good) knowledge of the condition after years of reading about and living with it.

Endo is an autoimmune disorder for which there is still no clear explanation. Every month the lining on the inside of a woman’s uterus (the endometrium) builds up and then sheds itself, at menstruation. These cells, that line the uterus, are designed to leave the body, but when a woman has endo, these cells are located OUTSIDE of the uterus as well. They can be found on various organs in the abdomen and some cases have even found them in lungs and brains! The cells don’t know that they are in the wrong place and they react to the same chemicals in your brain that trigger your period. So essentially, they start to bleed, but have no escape. When this happens month after month it starts to build up in the body and become very sticky. Reproductive organs can start to fuse together or form cysts.

For many women, it results in excrustiatingly painful periods, breakthrough bleeding and is also linked to a number of other autoimmune diseases. Contrary to what some celebrities have claimed in the media, there is NO CURE. The only definitive way to diagnose it is through laporascopic surgery because it can’t be seen on ultrasounds. It is diagnosed in stages 1-4; I have stage 4. For many women (such as myself) it also leads to infertility. The average length of time between onset of symptoms and diagnosis, is around 10 years. This clearly is a long time to be living with chronic pain and having no explanation for it.

And now my story...

I was a late bloomer. I was 15 before I got my first period. Something at the time I was actually worried about because I thought something was wrong with me. My joy of aunt flo’s arrival was short lived. It soon became apparent that my cramps were significantly worse than my friends. Right around this time, my mother had to have a complete hysterectomy (she was only 30 years old) because HER endo was causing her so much pain she couldn’t live with it any more. It took a few years for me to learn that it runs in families and that I was possibly going to have it too.

When I was 18 I went to a gynocologist and told her I thought I may have this condition. She said “go on the pill and it will stop it”. She never offered to do laporascopic surgery, never checked to see if I had any cysts or any other cause for my pain. She downplayed my symptoms and acted as if the pill would save me. I trusted her and stayed on the pill for about 5 years before the pain started coming back. Because I was never crazy about the idea of putting fake hormones into my body, I was in pain anyway, and I was in a serious relationship, I decide to stop the pill and use the natural family planning method of birth control. I took my temps religiously and learned my cycles and used barrier methods of protection.

Two years after I stopped, the pain was at a point where I could no longer function while on my period and I was also in pain outside of that time. I would curl up in a ball at work, crying in pain for hours. Or I would wake up hurting so badly that I couldn’t feel my legs or sometimes I would vomit. I dealt with extremely painful bowel movements as well. At my wits end, I found a new gynocologist who initially wanted me to wait 6 months before doing surgery. I called him back a few weeks later telling him that I think I’d be dead in 6 months. He bumped up my surgery to a week later. I am terrified of hospitals and while the surgery is minor, I was crying as they put me under. I woke up in a state of total panic and confusion. After I don’t know how long, I awoke and the doctor FINALLY said the words I knew all along: “You have severe endometriosis”. He removed a large cyst from one of my ovaries, and told me that my uterus is fused to my colon and he could not safely remove the adhesions. He then told me if I wanted to have children, I’d better start trying immediately. This was only a few months before my wedding and I was not ready to be pregnant. It scared me to my core to think I may never be a mother and it made me even more scared to tell my husband-to-be that if he married me, he may never be a father. We decided to just go ahead and start trying but in my heart I knew that it may be a long journey. We went through nearly three years of perfectly timed intercourse, 2 failed IUIs and one successful IVF, before I became a mommy! The pregnancy has kept my endo at bay for the time being. My pain during my periods (which thanks to breastfeeding only came back a couple of months ago) is manageable. I have been told I have to make a decision fairly quickly about getting pregnant again. My gyno is giving me 6 months to conceive naturally before we decide on either going on the pill, another laporascopy and/or doing another round of IVF. I am jealous of mothers who don’t have to factor these things into their decision to have/expand upon a family but it is what it is. I also worry that I will pass on this disease to my beautiful daughter. I hate to think of her going through pain and/or infertility. It breaks my heart.

I hope that I have taught you something about this condition which is often downplayed in society. Chronic pain, autoimmune diseases and infertility may not be life threatening, but they are life changing. They lead to depression, anxiety, relationship problems and sadly in some cases, suicide. They should not be taken lightly.

Thank you Meg for using your blog as a way to spread awareness. You have no idea what it means to me.



This was written by Jenny at
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for Meg's blog which is
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1 comment:

  1. :) Thanks for sharing my story...and great job on all your work this month!

    ReplyDelete