Endometriosis is a Dirty B-Word!!!

My husband and I work hard not to curse around Ian.  But sometimes a curse word is warranted, so we say something like “B-word” or “S-word” or “F-word.”  We can always tell from the context what was meant.  Well I have to say, ENDOMETRIOSIS IS A BIG FAT ”B-WORD”!

I thought that after pregnancy I would get a bit of a reprieve from my endometriosis symptoms.  Many women do.  In fact, some are “cured” of their symptoms after giving birth.  I’ve really tried to keep a positive attitude that I would be one of the lucky ones.  Apparently I have yet again disproved the power of positive thinking.

It has been approximately nine months since I gave birth.  Once the after-pregnancy bleeding stopped, I had nothing.   But, I was breastfeeding, so I assumed AF would come back after I weaned Ian.  Three months ago I weaned him, and for three months…no AF.  I had sort of resigned myself to the fact that my female cycle was just dead.  My body was in menopause, just as it had been before I got pregnant.  Then, yesterday, I woke up with a nasty surprise.  Apparently AF decided to sneak back into my life like a thief in the night…literally in the night.

I should back up a little.  I’ve felt twinges and aches for months that felt like endometriosis pain, but I kept trying to tell myself it is just my uterus still shrinking or my body adjusting after delivering a baby.  The last week or so, I had the old intense ache in my low back, non-stop need to urinate regardless of how little urine I had to give up, and the cramping that rivals food poisoning.  Trying to be a Positive Polly, I told myself that these things could be a result of my new healthy lifestyle – high protein diet, greatly increased physical activity level, and increased water intake.  Somewhere inside I knew it was endo pain…but I didn’t want to believe I could have endo so soon.

Anyways…back to the thief in the night.  So, I woke up and cleaned up the colossal mess that anyone with endometriosis is all too familiar with.  I felt an insane amount of pain and nausea, but I sucked it up and went to work with as much Ibuprofen in my system as my stomach could handle.  I did the obligatory super tampon /overnight pad combo routine all day at work.  And when I can home, I was greeted with the unpleasant surprise that somehow I had failed to notice that I had leaked onto my pants anyways (at least they were black pants).  Humiliation on top of frustration and pain.  Great.

I pulled out the old heating pad from its storage spot and prayed for some relief.  I forgot how exhausted endometriosis makes you.  Maybe all periods cause fatigue.  I’m not sure.  I was diagnosed with severe endometriosis at age 14/15, so I don’t know if I ever got to have endo-free periods.  But I couldn’t keep my eyes open yesterday.  Maybe it was the pain that was draining me.  I’m not sure.  But whatever the cause, anyone who says that endometriosis isn’t a chronic, debilitating illness hasn’t been through it.

Today, things have only gotten worse.  I’m exhausted, cranky, sick of spending as much time in the bathroom as out.  I don’t feel like eating.  I don’t feel like sitting on the stupid towel I have to put down on the furniture “just in case.”  I have a million thoughts swirling through my mind like…”Do I really want to endure this for a few more years while my husband comes around to the decision that I am already comfortable with…that our family is complete with Ian?”  or “What if I decide to have a hysterectomy and end up getting cancer (having a hysterectomy at a young age increases your risk for some cancers without hormone replacement therapy…which you can’t take if you want to keep the endo at bay)?”  or “How can I have worked so hard to get pregnant and now be so willing to let my ability to do that in the future go away?  Am I making too hasty a decision?”

There are no good answers to these questions.  In fact, there is really no good in even asking the questions at all.  I know they are just a product of pain and frustration and that once this bout has passed my concern about those issues will pass as well.  But, as endometriosis always does, it will continue to slowly progress, interfering with my life more and more until, eventually, the questions have to be answered.  Until then, I know I need to just bite the bullet, take comfort in the fact that I am not alone and that there some of my friends in “the real world” and in “blog world” get what I am experiencing right now.  It is hard to expect any empathy from someone who just hasn’t experienced this (i.e.- my husband).  Endometriosis sucks!  It’s unfair.  And it’s a B-word!

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.

The Last Shot

Today I came to the most devastating conclusion of my life.  If I do not get pregnant this donor cycle, I am never going to be pregnant.  I’m giving you fair warning.  This post is going to be long.  This post is not going to be a happy one.  There will be no tie-ins to fairy tales and no attempts at clever analogies.  Just reality and sadness.

As many of you know, I have been having pain and spotting for three weeks now…with the pain getting worse since I started the birth control pill a little under two weeks ago.  Well, the bleeding has been getting heavier and last night and this morning, the pain was so bad that I had difficulty standing up straight and walking.  I called my fertility center, and being the awesome and sympathetic people they are, they got me in immediately to be examined.  I’ll spare you all of the details, but the bottom line is that the pill is evidently messing with my estrogen level and irritating my endometriosis to the point of this unbearable pain and bleeding.  On April 3^rd, I will stop the pill and start taking Lupron (which is what they use to treat endometriosis).  So, at least this pain and bleeding is temporary.  Also, because I will be on Lupron the rest of the donor egg cycle, through egg retrieval, the endometriosis won’t interfere with my chances of conceiving.

With that said, it has only been seven months since my last (very aggressive, four-hour-long) surgery to remove all of my endometriosis.  I travelled to one of the top surgeons in the country for the surgery, and he had assured me that he got it all…and by the way I felt after the surgery and the horrid pictures of what my bladder, bowels, uterus, ovary and abdominal wall looked like after the surgery…I have no reason to doubt that he did get it all.  But, my endometriosis has been getting progressively more aggressive.  The length between my surgeries has been getting shorter and shorter.  Each surgery, more implants and adhesions are present, and more organs are involved.  My doctors, and there have been a lot of them throughout the years, have all told me that I needed to get pregnant as soon as possible because a total hysterectomy was imminent.  That advice started at age 16. 

Today, the amazing (really, she is a beautiful human being) head nurse at the clinic hugged me as I was crying and comforted me as much as she could.  She said “We just need to get you a baby in that uterus, and then you can have a hysterectomy and this will all be over, honey.”  I replied, “When I was 16, they said the same thing…and where I grew up, being pregnant at 16 was not necessarily outside of the norm.  Maybe I should have listened.”  She said “No ‘what ifs’.  We just need to get you that baby.”  From your mouth to God’s ears, kind and wonderful nurse.

They gave me Tylenol with Codeine to help with the pain, and said to take it easy for awhile.  So that is what I am doing.  Missing yet another day of work, thinking about how many days of work and school I’ve missed because of endometriosis pain and surgeries.  Thinking about how many days of school and work, and other activities, I’ve missed because of fertility treatments, likely necessitated by the effects of the endometriosis.  It is very hard not to “what if” about the past, but, when I got home from the pharmacy, I felt like I needed to look to the future instead of the past, and so I did.  Unfortunately, that analysis has been equally upsetting.

I realized I can’t do this anymore.  I wanted to be pregnant and give birth to my baby so badly that I was able to make the leap to giving up a genetic connection to my child to achieve pregnancy.  But I can’t keep going through surgery after surgery.  My last surgeon said that the next surgery was going to have to be a hysterectomy…and I think he was right.  I can’t keep experiencing this excruciating pain, nausea and fatigue.  I’m out of treatment options, unless I want to be on pain meds for the next few years.  So, I’ve decided…if I don’t get pregnant from this donor egg cycle, I’m having a hysterectomy and moving on with my life.  Hopefully adoption will be part of that future.  Hopefully the Prince will be okay with my decision and not opt to go find a wife who can give him children.  Hopefully I will not spend my life wondering if I should have tried to suck it-up a little harder and stuck it out a little longer.  But the bottom line is, endometriosis has won.  I am putting up one last battle by continuing with a donor egg cycle…but if it doesn’t work…I’m admitting defeat.  It breaks my heart to have come to that decision, but it is breaking my spirit to live like this.  I know that someone out there will be thinking that I shouldn’t make this decision while I am in pain and emotional, but that is exactly when I need to make the decision.  It is too easy to forget how much this hurts and how obvious it is that I can’t keep going through this, when I’m not in pain and I am obsessed with getting pregnant at all costs.  Some costs might be too great…even for a pregnancy.  God it hurts to say that. 

I emailed the Prince about what happened today and what my choice is regarding the future.  He is always busy with students at work, and I thought that it would be easier for him to hear this news without me choking it out between sobs over the phone, or while he prepares to go to his physical training appointment tonight.  I told him that I know he can’t fix this, but he can help me to feel better by being kind and sympathetic.  I told him that I know this has to be hard for him too, but he is the only one who can give me what I need right now – the support of my best friend…my life partner.  I pray that he is able to be my rock right now and to surprise me by being a little emotional…a little empathetic.  It’s a lot to ask and it’s a lot to throw at him, but I can’t help it.  I know I can’t get through this decision alone.

The pain killer is finally kicking in, so I am going to stop writing this novel without a plot and try to sleep a little.  I know that there are a lot of you out of there who are supportive and I am comforted by that support already, even though I know you haven’t even read this yet.  Thank you for helping me feel cared for.  It is strange to have close friends, who know my darkest secrets and most intimate thoughts, whom I have never met.  But I am so grateful for you.