I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!





Thursday, August 15, 2013

Yuuuup

So, I've been to the OBGYN a few times over the last several weeks.  Much to my delight, he took my complaints seriously and did a very thorough exam.  I hurt for DAYS after that exam.  A few days later I had an ultrasound that revealed a 4 cm endometrioma on my left ovary....which is funny because that isn't the side that has been bothering me.  Go figure.

At any rate, surgery is up to me.  Not ready for that yet.  BC-not an option, and at any rate we are keeping things open right now as far as trying again.  We aren't preventing anymore and just seeing what happens.

So, I just sit and wait.  Wait until my period is so frequent I can't handle the constant bleeding?  Wait until the pain is just too much to function?  I'll know when the time is right.  When I'm ready to go "there" again.  There are so many questions surrounding surgery, I'm just not ready to go there yet. Remove the bothersome ovary?  What about my colon involvement and it's attachment to my uterus?  Hysterectomy? 

Not ready for any of that yet.

In the meantime, I'm doing what I can to take good care of myself.  My fatigue seems to be a little better-I started exercising more frequently and maybe that's helped?  It's definitely helped my psyche.

And, in the midst of all this, our amazing little man turned two this week.  I can't believe it.  HOW has TWO YEARS gone by so quickly?  he's our entire world and I am so thankful everyday that he is ours. 


Wednesday, July 3, 2013

Endometriosis, is that you?

If so...go away...now!!!!

I've been experiencing on and off nausea since my son was born, but, the past few weeks I've begun to feel worse and worse.  During this past week I've been feeling particularly crappy.  Nausea, cramping, abdominal grossness (that really should be a medically appropriate term), early satiety.  This is how it all began all those years ago. If this continues throughout the weekend I'm going to call the OBGYN so they can look at me like I have 3 heads when I ask for an ultrasound.  These feelings are very similar to when I've had endometriomas in the past, and, I'd like to at least explore that before they do all this other garbage on me and not finding any reason for it all.

I wish they could see your ugly face.  I wish they knew.

I really hate you endo.  For realz.


Sunday, June 30, 2013

Health update and, siblings?!

I couldn't quite make it without the citalopram.  I started seeing a psychologist, and he said how I reacted so quickly to starting a new med he was certain that I was having a pretty bad withdrawal.  Another few weeks and he thinks I probably would have been feeling better, however, I'm not sure I could have made it that much longer.

I'm doing ok now.  I'm on a SUPER low dose of Lexapro, and, not having the symptoms I was before.  I think this is something that I will come off in a few months, with some talk therapy sessions if to help with my GAD if I can ever get in to see someone!!!

I've been to a cardiologist in the mean time for my fatigue and near fainting spells.  I had a tilt test done.  It wasn't positive, but, suggestive.  Next step is the endocribnologist for my very low glucose levels.  I'm really hoping there is an answer out there for why I've felt so strange since giving birth...something that can be fixed I pray.  I finally have far many more better days than bad, but, those bad days can take a toll!!!

My son is amazing.  He's almost two...where does the time go?  I hate when people ask us when we are going to have another one.  Um, I'm sorry, wasn't it a bit of a struggle to get where we are now?  I answer and say that we are enjoying every second we have with the gift we have been given.  Most of time that shuts people up but MAN are people opinionated on the fact that children need siblings.  Don't get me wrong....long ago it was my dream to have a large family.  However, that may not be in the cards for us.  I'm not sure where life will take us.  If we can conceive on our own, I'd be thrilled.  If we can't, I can't really ask anymore of the wonderful son that we have.  We are DONE with IVF.  Our son was our last embryo.  Not going there again.  Adoption isn't off the table, but, again it goes back to enjoying and feeling blessed with what we have.  My health hasn't been all that awesome and I'm honestly not sure I could tackle two.  I know that we will be given what is meant for us...and, until then I'm loving every square inch of this little guy....who isn't so little anymore.




Thursday, April 4, 2013

GReat article I found this morning that is keeping me going!

I think I can I think I can....

7.3 days for Citalopram to be 99% out of the body...that's Sunday...I can do this....

Going off anti-depressants

Wednesday, April 3, 2013

Here's another hell-of-a ride...(A tale of citalopram)

I've decided the time has come to come off my SSRI (Citalopram, generic for Celexa) that I was taking for post partum depression.  I started out two weeks ago halving my 10mg pill.  Then I 1/4thed it for 1/2 a week.  I've been completely off the pill since Saturday of last week (Friday was my last).

This sucks.

Let me back up by saying that after I had my son, I was extremely weepy, dizzy and exhausted ALL THE TIME.  Not the normal, holy crap I haven't slept exhaustion.  Something different.  I struggled with this for about 4 months, and, finally they diagnosed my PPD.  I went on citalopram and things got better, slowly.  About 18 months after having my son, I was finally feeling normal about 90% of the time.  But, I did have some weird visual side effects and ZERO sex drive.  After being on the Citalopram for a little over a year, I was ready to be back to being drug free.  All those years of hormones to NOT conceive, then all the hormones over the years TO conceive, then the citalopram-I was over it all.

So, fast forward to today.  5 days off citalopram.  Here's how it's gone so far:
Day 1- "Wall of exhaustion" right after I ate lunch.  A feeling like I needed to curl up in a ball and take a good 2 hour nap or so.  It passed within a few hours
Day2- Felt great all day, until about 7PM when the exhaustion was so bad I literally couldn't do anything but sit on the couch.  A very strange feeling indeed. 
Day3- Woke up and felt like I hadn't slept at all (after 8 hours of sleep!).  That feeling combined with a foggy out of body floating feeling lasted until after lunch that day.  In the meantime I phoned my Dr.'s office to give them the scoop.  THe Dr.'s advise was that it should get better within the next 3-4 days, and if it didn't or it got worse, that I would need to be seen.
Day 4- MUCH better.  Woke up exhausted again, but, the feeling shook around 1130.  Imagine my excitement.  The fatigue returned around 6 that night and lasted another good hour.
Day 5-Felt tired upon waking, but, pretty normal until around 1145.  It's now 1 and I'm feeling slightly better, but, still blah.

Sometimes the exhaustion is a shakey feeling.  Sometimes it's dizzy.  Sometimes it's all things combined.

Of course these withdrawal symtpoms are doing NOTHING for my generalized anxiety.  "Will I ever feel normal again?  I just got to feeling at my best, why did I do this to myself.  Maybe I should go back on.  Is this what the rest of my life looks like".  This is how my brain is thinking right now...which doesn't help the other symptoms I'm having.

I wanted to share here to see if anyone had similar experiences coming of a SSRI, and if anyone could tell me how long this will last.  Dr. says this week.  I find that hard to believe.  A co-worker said her dizzy spells lasted around a month.  Other places say months.

I'm just scared and mad.  I don't want to go back on these pills though.  They got me through a dark time in my life and I really did need them.  But, I want my brain back.  I want my enery back.  I've got an amazing 19 month old to chase after and to adore...I dont have time for this!

Wednesday, March 6, 2013

ENDOMETRIOSIS SURVIVOR'S LETTER

Survivor Letter

About the Letter, from the author: Written 17 years ago, the “Survivor Letter”, as it has come to be called over the years, has been distributed around the world and reached over a million unique readers since its release.  It has been translated into several other languages; reprinted in books; shared extensively across global patient communities; read to the crowd from the steps of the Lincoln Memorial in Washington, DC at the national EndoWalk for Awareness; given to families, physicians, caregivers, spouses, friends and government officials; and is currently used by various advocacy organizations in the US, Europe and Australia to facilitate efforts at raising awareness and validating those who live with the disease. A heartfelt thank you to all who have felt it was of value enough to share.  Unfortunately, a very small number of select individuals have missed the point of, or otherwise misunderstood (perhaps intentionally), the Letter.  It was never written "in anger" or from a place of hopeless desperation. This is not an "angry" piece whatsoever; but rather, a heartfelt plea to simply BE HEARD and understood.  If one has never truly walked in a survivor's shoes decade after decade, or had an overwhelmingly negative impact on their life as a result of this disease, it is unlikely they would understand the real message - and though others may interpret it as they wish, girls and women who have truly struggled with endometriosis in ways that others will never understand DO 'get it' - and it is for THEM that this Letter was released publicly so many years ago.  The Letter is provided below to give those around you a better understanding of what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large.  More importantly, this letter is for all the Endosisters around the world who hold their heads high everyday - in spite of endometriosis.  It is you who have banded together and made real strides in this illness.  You are all my heros and  keep me motivated every day to keep fighting the good fight against this disease for us all.-Heather

Friday, February 22, 2013

Posting for a friend.....experience with a hysterectomy and the options of the surgery....

I'm posting this in hopes for feedback for a friend:

Perhaps TMI, but I could really use your helpful hints and tidbits seeing how I don't have experience with this or know many people that have talked to me about it...Several doctors have told me in the last month that I shouldn't get pregnant again (and honestly, even if I came across someone now that said it was fine, I can't imagine that I would believe them) and not knowing what the problem is for sure with my uterus (though they are speculating placenta increta, but won't be able to know that for sure until it's under a microscope) I'm still at risk for heavy and irregular bleeding while it's in there.  So looks like I've signed myself up for a hysterectomy (March 12th.)  The doctor is planning on doing it robotically and lapascopically, then depending on whether I keep my cervix or not, the uterus would be cut up and pulled through the little holes in my belly or all of it pulled out the south end. He's planning to leave my ovaries and I asked him to take out my fallopian tubes (which he readily agreed to though supposedly there's not enough good evidence that it's linked to ovarian cancer to make it the standard yet, but he said it was easy enough and won't affect anything), but I don't know what to do about my cervix.  Any experiences?  During the conversations in the hospital, the OB was going to leave it and now that it's more "planned" his default plan is to take it.  With further questioning, he said I was at low risk for cervical cancer and as long as I am in a monogamous relationship (which is certainly the plan!) the surgery was easier, the recovery might or might not be easier and he had no problem leaving it.  He also answered that he had no problem taking it out.  So he pretty much left the decision up to me (while assuring me that there is really not a wrong choice in this situation or he wouldn't be offering me a choice.)  When I asked why the OB in the hospital didn't really make it a choice, his reply was that in more emergent situations they want to get in and get out to minimize bleeding and leaving it was a quicker surgery.  But the fact that leaving it is going against the "default" answer has me pondering and I'd love to get some feedback from someone who's been there, done that either way.  Or just some more real life experience about recovery and what to expect or whatever else is on your heart to tell me.