Tuesday, July 5, 2011

Get Over Yourself, Princess! Part One: Everything Endometriosis

I’m ashamed to say that, lately, I’ve been spending a considerable amount of time feeling sorry for myself.  Actually…I feel sorry for myself, feel guilty that I’m feeling sorry for myself, and then focus on hope and happiness to atone for my self-pity.  It’s an exhausting cycle and I don’t think it is particularly healthy for me or the people around me.  So, I have decided to get out of my own head and start spending more time thinking about the ongoing plight of others…starting with my sisters struggling with endometriosis.

Endometriosis, for those who don’t know, can best be summed-up in layman’s terms as a chronic medical condition which occurs when tissue that should be growing inside the uterus grows in other places, outside of the uterus.  (My disclaimer *** I am not a medical professional and my descriptions are summaries of my own personal knowledge, not to be relied upon for diagnosis or medical treatment *** Sorry, it is the lawyer in me that made me do that).  As we all know, when you menstruate or have increases in estrogen production (like during injectible fertility cycles), the tissue that lines the inside of your uterus thickens and, eventually, bleeds/sheds.  The same thing happens to the intra-uterine tissue that is growing where it isn’t supposed to be.  So, you end up with “chocolate cysts,” cysts filled with blood, causing irritation throughout the abdominal cavity.  A laparoscopy is typically used to diagnose endometriosis and to remove the endometrial “implants” and adhesions (thick bands of scar tissue that stick things together - ex. bowel stuck to abdominal wall) that form as a result of the endometriosis cycle.  When the chocolate cysts and implants get inflamed and bleed, it can cause near-debilitating pain…actually, the pain is debilitating, not near-debilitating.  Frequently, the pain is accompanied by nausea and exhaustion, and occasionally it is accompanied by headaches and other unpleasant symptoms.  Women suffering from endometriosis also tend to have heavy bleeding and increased cramping during menstruation. 

In addition to the difficult symptoms of endometriosis, endometriosis causes its own infertility challenges.  I don’t have time to summarize all of the ways that endometriosis lowers a woman’s chances of getting pregnant, but there is one area that I think people aren’t aware of that I want to touch on briefly.  You see, I was diagnosed with endometriosis as a teenager, so I feel like I always knew that it would be trickier for me to get pregnant (as in “it might take longer for me to get pregnant naturally”).  But, it wasn’t until a few years ago that I found out I had premature ovarian failure (POF)/diminished ovarian reserve (DOR).  I couldn’t believe that I had such lousy luck, getting hit with two infertility causing conditions at the same time. 

What I didn’t know then, but I know now, is that “luck” had nothing to do with it.  There is a correlation between endometriosis and decreased egg quality and quantity.  There is research indicating that infertility in endometriosis patients may be related to alterations within the oocyte, which in turn results in embryos with a decreased ability to implant  (http://humrep.oxfordjournals.org/content/9/4/725.abstract?ijkey=2949c7500d2fb8a3aa910e58d9da625ccc573867&keytype2=tf_ipsecsha).  There is also research indicating that the reduction in natural fertility associated with endometriosis apears to be at least partly due to a reduced fertilizing ability of the oocyte (http://humrep.oxfordjournals.org/content/13/7/1825.abstract?ijkey=e4a97e6c0a6b44db4c2f4bffd8ef5f0df5ba248b&keytype2=tf_ipsecsha).  These are two of the most clear-cut studies that I have found, but there are many others available online which deal with the correlation between endometriosis and its effect on oocytes.

Would it have made a difference to me if I had known?  I’m not sure.  I think I had to be ready to move onto the idea of donor eggs and I’m not so sure that the research indicating that my chances of being successful with my own eggs wasn’t great would have hindered my resolve to get pregnant with my own eggs.  But it may have.  I don’t write this to discourage anyone out there who has endometriosis and is pursuing IUI or IVF.  I’m an information junky and if I had it to do over, I would want to know at the outset that I was working at a double disadvantage, and that's why I throw it out there.

A little over three months ago, the effects of endometriosis had brought me to a point where I was ready to call it quits if my first egg donor cycle wasn’t a success (http://theprincessandthepeestick.blogspot.com/2011/03/last-shot.html).  Thank God my “last shot” was the one that worked.  But, I recently read the post of another women who is choosing to pursue child-free living because the pain and devestation of endometriosis has become too overwhelming to handle.  What an incredibly difficult choice to make.  Women face it every day.  Every day, there is a doctor somewhere telling a woman that her reproductive clock is winding down, at an early age, because she has endometriosis.  Every day, a woman is being told that she needs to have a hysterectomy because it is the only thing that will truly save her from the disabling medical condition that is endometriosis.  Every day, another woman gives up on her dream of having a child that is bilogically her own because she had to choose between giving up on that dream or giving up on being able to function in her daily life at all.  There is nothing I can say or do to fix that.  But for today, I am going to do the only thing I can do.  Today, I will get over myself and keep all of the women who are suffering with endometriosis close to my heart.

8 comments:

Lindsey said...

Great post! I love educational posts and also hearing how other endo girls discribe the thing that has taken over all of our lives!

Endo_Life said...

Excellent post! I will at some point read through those links you have posted.

Do you or any of the blogs you read have any experience with late ovulation and a short luteal phase?

Princess Wahna Bea Mama said...

Endo_Life,

In addition to endometriosis, POF/DOR, and only having one ovary and tube left, I also had extremely long cycles and a short luteal phase - 10 to 11 days. My first RE said that it was just further evidence that my body was slipping past its reproductive years, as I guess those changes are typically found in women heading into menopause. Eventually, my cycles got to be 60+ days long, and then they stopped occurring spontaneously. They had to be jump-started with meds.

My second (current) RE didn't like to get into the "why" of things. He is more of a problem solver. So, we controlled my cycles with meds as much as possible and I took many progesterone supplements to help with the luteal defect (3 Prometrium suppositories per day and an IM injection of progesterone in oil each night, in addition to daily estradiol pills three times per day). That fixed my short luteal phase issue. I always made it to my beta test without AF showing up. AF would stay away until a couple of days after I stopped all of the supplementation.

I hope this info is helpful. I think endo shortens our reproductive window and a lot of the "other diagnoses" are really just complications arising from the endo. But that's just my opinion.

China Doll said...

Really useful post :)

Willow said...

I have both endo and POF, and I had no idea there was a connection! Thanks for sharing this!

Really enjoying reading about your journey. So here, have a blog award: http://writebaby.blogspot.com/2011/07/big-thank-you-to-kelly-versatile.html :)

Bria said...

This was so inspiring. I am getting ready to have my second surgery for endo and I have laid around and felt sorry for myself. You inspired me to be stronger and more hopeful!

Francesca Mcniel said...

How i got a cure for ENDOMETRIOSIS.

I actually promised myself that i will do this because i never in life thought i would be cured of ENDOMETRIOSIS because my gynecologist told me there was no cure and because of this i could not take in and get pregnant. I had ENDOMETRIOSIS for 7 years and this was a big pain to me and my husband due to the downcast we felt for not having a child. I experienced irregular periods or no periods at all sometimes, heavy periods, painful intercourse. I seeked a cure from one doctor to the other used androgen, clomiphene, metformin and even traveled to different states to see other doctors to no avail. My husband got to know about Dr. ALeta via a testimony he read on the internet on how a woman got a cure and he contacted her with the contact she left. I got the herbal medication and used it for the speculated 3 months that was all i have a son who is just 8 months old. Do not give up just contact her on (aletedwin@gmail.com) on how to get the herbal medication. Thanks and i wish you get cured soon too.

Sinead Hogan said...
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