Endometriosis

So March is Endometriosis Awareness Month ~ its good to see more information popping up online and more people sharing their stories. I had a high school friend message me the other day asking about Endometriosis because she was concerned her daughter might have it and the doctors seemed to ignore her concern that it might be endometriosis because she was so young, she actually remembered when I would miss school or cancel sleepovers because of my "cramps".....I know this frustration all to well and was excited to share the information because I know there are so many young girls out there that could be going through what I went through. I pray that this young girl does not have it but if she does I hope that she can get some answers a lot sooner than I did. I often think about the first time I asked my doctor about Endometriosis, this long crazy word that I had seen in a pamphlet in the doctors office.....her response was "you are too young for that". I wonder had I listened to my gut and fought for answers if things would be better today. So I decided to put together the below personal explanation using my own words (because the medical stuff gets confusing) as someone that has suffered from it since 10 years old. 

What it is?

When describing Endometriosis I use "a spiderweb of barbed wire" quite frequently. Think of a spider web in your abdomen wrapped around your organs....sometimes your organs get stuck and can move around properly as you do different activities...sometimes simply standing up straight causes pain and discomfort....cardio and exercising is hard, which sucks when your husband is a great personal trainer and you feel like you are letting him down when you aren't able to give 100% because of the discomfort. It was after a few months of doing cardio with a friend/coworker that she noticed I was constantly holding my stomach and complaining about the pain that she made me an appointment to see a doctor. In 2008 it had almost divided my bladder in half, so when my bladder would fill I would get this golf ball size lump on my stomach until I went to the bathroom. I find myself often blaming my grimaces and pain on other things "I just have a headache", but most of the time I just do not talk about it and act like "Im fine". Sometimes I feel like Im always complaining about something not "feeling good", and then I think "if they only knew how I was really feeling today"....... The pain is not just during "that time of the month" it is everyday! In addition to the abdominal pain, there are many more symptoms....painful bowels & urination, painful sex, fatigue, infertility, anxiety, depression. Some days I may experience just one or two of the above, then there are days I experience them all at the same time.....

Diagnosing it...

I wasn't diagnosed until age 27....after 17 years of knowing something wasn't right..these weren't"normal cramps", or "dysemmenoria" as the doctor labeled it. The doctors should have taken a hint when at age 10 I thought my ruptured appendix was just "normal cramps" as the doctor had put it so many times. In 2008 I had laproscopic surgery because the endometriosis had caused 2 grapefruit sized cysts, and several small ones that caused me to lose one ovary. It was then the endometriosis was confirmed and I could finally tell the world I wasn't crazy and infact I had built up a very high pain tolerance. You can not see "spider web of tissue" on ultrasounds or xrays so the only way to know 100% sure that you have it is for them to open you up and take a look. Most doctors will not perform an exploratory surgery just to see if you have it and honestly I wouldn't recommend having it unless you had reason to believe it is obstructing an organ or causing additional internal issues. If you suspect you or someone you know has it, I recommend you find a good doctor. You may have to see several before you find one that you feel comfortable with and know that they have your best interest in mind in regard to your reproductive health. If your doctor suspects endometriosis there are things that can be done without surgery to help preserve your future reproductive health. They may not necessarily stop your current pain, but can prevent it from getting worse and causing more issues. 

What Causes it?

No one knows what causes it....genetics? dna mutations? ....we do not have a clue....and not enough research is being done on it so that one day we will know. Since so many that suffer with it suffer in silence not a lot of people know a lot about it and what those of us that have it go through. For some reason my body just decides to release the tissue into my abdomen instead of letting it flow out of my body during my monthly cycle. 

What is the Cure?

There is no cure....and the few treatments available are only temporary IF they work at all. I've had laproscopic surgery to get "cleaned out"...only lasted 3 months. Tried many medications and the only thing that helps keep the pain level down is constant progesterone birth control (I skip the placebo pills so I don't have a monthly cycle). There are intense hormone therapies that essentially put your body into menopause (and yes the hot flashes suck!!), or I can have a full hysterectomy.......but neither are viable options when you hope to one day have kids, and both have their own side effects that can be just as debilitating as the endo pain. So you just have to choose the lesser evil in hopes of one day they find a cure.

Dependency on Pain Killers....

Sometimes you feel like a drug addict. I have a prescription for pain pills just for my endo pain....I keep them close by and will notice immediately if just one is gone. I once had some stolen from me and went into a full panic attack because I was afraid of the pain starting and not having anything to help. I've been known to race to my doctors office on a Friday right as they closed when I realized I didn't have a refill and jumped around like an idiot outside so I could get their attention to get a refill called in. Fortunately my current doctor understands, unlike those when I was younger who thought I was a teenager just trying to get pills to get high on....

Infertility....

Im sure everyone has noticed by now we do not have kids. I would love to have a good explanation for this but once again, there is not enough research to figure out how endometriosis has effected my ability to conceive. All we know is there is a bunch of spider webs that interfere with my normal bodily functions and hormone levels so there are many possible reasons and ways it can effect my fertility....not to mention removing the tissue surgically only caused more scar tissue so I have that in the way as well.

That's my brief summary/explanation of Endometriosis. Hopefully one day this disease will be taken more seriously and we get more funding and research to one day find a cure and better treatments. If you or someone you know is experience symptoms like this I BEG you to find a good doctor immediately. I would never wish the pain alone on anyone, and I can not stand the though of one of my friends and loved ones going through the roller coaster of infertility.

Hopelessness

It has been a long time since my last "public" post. I say public because I have several "drafts" that I decided not to post. I sit here now and wonder why I even pulled up my blog because I have no intentions of sharing with the world how Im feeling. I refuse to show my weakness, and I do not want anyone feeling sorry for me. 

On April 8th, 2015, the day I got the official "NOT PREGNANT" from my first IUI, I lost all hope, I hit a wall and fell into a very dark place. I have held it together for so many years, always able to find happiness. But this day was the first time I truly struggled to act "normal", "happy", and like everything was okay. I told myself to just get through the day and everything would be okay....then just get through the week....the month.....and now 10 months later. I find my self wondering if it is ever going to be okay.

After fighting it for almost 6 years, I have let infertility define me and destroy my happiness. I know I should be grateful for all the things I have in my life, the awesome family & friends that love and care about me. But I feel like no one really knows me anymore, hell I don't even know myself. I cant drive down the street with out seeing a daddy helping his kids ride a bike, the pregnant neighbor that is glowing with happiness, the Facebook announcement about the couple that just started dating a few months ago that is expecting, without feeling bitter and sad.

I feel like everyone has these expectations of me to be the responsible, mature, organized, sane, loving, helpful person that I have always been when all I really want to do is say screw it all, quit my job, become a hermit, and run away from everyone and everything. I no longer enjoy being the one that everyone depends on, I no longer enjoy planning stuff. I get anxiety when I have to attend to family gatherings, birthday parties. I used to love buying birthday and baby shower presents but have found myself trying to avoid them. Before I just got a little anxiety and would just had to remind myself it would suck more if I missed getting to see my family or missed a birthday party, so I would suck it up and be fine...

I am so tired of hurting mentally and physically.  I'm tired of thinking about it...my brain and body shut down anytime I attempt to motivate myself to try again. I'm over complaining about my everyday aches and pains...almost like I tell myself if I don't talk about it, then it's not real. I'm tired of acting like I'm okay.

I feel so alone. I find myself purposely avoiding those closest to me, and I feel most normal when I'm around people that do not know my struggles. How can anyone understand if in don't understand myself? How can anyone make me feel better when there is no way possible to get me what I want...

I feel like a horrible person, like I'm letting everyone down around me because Im not the happy, helpful person I used to be. I know its effecting my marriage and I wonder sometimes if I'm pushing him away. Luckily I have a husband that absolutely adores me, but even we have our struggles and I can't help but wonder what will be his breaking point with me. From the outside looking in I'm sure everyone is like "he is so lucky to have her" but no one sees what he puts up with me, and the daily struggle it is for him to do the one thing he loves to do - make me happy. I watch him struggle with it and all I can do is look the opposite direction and think that he would be better off without me anyway. He is really the only one that gets to have a small glimpse into my world. I go from being seemingly perfectly happy when around other people or on the phone with someone, and as soon as I'm home or hang up the phone I am withdrawn, sad, angry person. He doesn't understand why I'm happy around everyone else but him.....he doesn't understand that the last thing I want is for everyone else to see the broken, tired, sad side of me, and then have to explain myself. So I act happy. The only way I know to "get back to normal" is to convince my self I no longer want kids or to give up on having a biological kid and adopt. But just the thought of that sends me into a panic attack. 

I'm sick of thinking about the financial side of it...we can't move forward without a substantial amount of money...and if we were to get the money....what if it still didn't work...hell we cant even afford the bills we have so why are we thinking about bringing a child into this world? Im one week away from a fertility grant deadline and I can't bring myself to even think about writing the "statement of infertility history" or fill out the application. Besides we dont have a "great" story to tell.....we have only done one IUI, not 4 IUIs and 2 IVFs like everyone else......we haven't lost any kids....we haven't overcome any major medical issues, I mean according to the "world" endometriosis is just "bad cramps", everyone has them, never mind the fact it has already caused me to lose and ovary and is keeping me from getting pregnant.....so I feel like Id be wasting my time any way, which will just lead to more heartache when I find out we didn't get it.

I see the stories of people that have spent a lot more than me, had many more unsuccessful tries than we have...and I wonder how they find the strength to try again, how they mentally handle the continued heartbreak...how they find the strength to continue to have hope. I find myself reaching down deep, longing to remember how it felt to have hope and be positive about our future.....and how it felt to be happy.

Two Week Wait..

March 25th ~ Well today begins the first full day of my two week wait....this has already been the longest day of my life and 13.more days to go. The bloating from the hcg shot is miserable. I just have to keep thinking that it is my body doing what it's supposed to. But geez, Im miserable getting up to go to the bathroom, not to mention this bed in the hotel is like 3 feet off the ground so I have to jump down. We do have a jacuzzi tub in the room so I look forward to relaxing in that a little later. Tried to go shopping but the bloating was just to much. We had lunch at cheesecake factory....I managed to leave with no cheesecake BUT as soon as I got back to the hotel I was craving it, so I made it know that that's what was for dessert! It's really nice just lounging in our hotel room, napping, and watching movies. It's very rare that Greg and I get a chance to lounge around and do nothing all day.

April 4th....I have been very hopeful throughout this process, however today is different. I woke up with a feeling that I was not pregnant. My body feels normal...the bloating and cramping have gone away, almost like the calm before the storm. My anxiety about the cramping has already started. I really hope I'm wrong. I mean I've never been pregnant before so what do I know......

April 6th ~ I broke down and took a at home test, it was negative. I know it takes longer to hit your urine than your bloodstream, but it really just confirmed what I already knew. I dont want to say anything to anyone because I do not want them to say things to try to convince me otherwise. Went to pick  up a crib from a friend tonight and it took everything in me to not break down. I got a bit "snippy" with Greg and I know he didnt understand what was wrong with me because I didnt want to tell him either. 

April 8th...8am: today is the day. I sit here in the lab waiting to have my blood drawn and every piece of my heart is already breaking telling me I'm not pregnant. My brain says its still possible...possible you don't know your body as well as you think you do...possible pregnancy pains are very similar to menstrual cycle pains...possible all the doubt and negativiy in my head is just the hormones...possible I'm wrong! Today is also the 15th anniversary of my father's passing, the last thing I wanted is for this to be the anniversary of my first failed IUI cycle. I need a happy memory for today.

1:15pm: still no word....my anxiety is through the roof and my heart is racing...I'm trying my best to focus on work, actually thank god that I am working bc otherwise I would really be driving myself insane...every one is already asking, texting, and messaging about the results, I know they mean well but it makes me more anxious because now if I'm not pregnant I have to tell them all.....

4:00 left work, just called the office and the recording says it's closed??? They are typically open till 5:00pm.I can not go overnight not knowing...this is gonna kill me....

4:45 decided to check my online portal...and the results are in....not pregnant...on my way home now to just lay in bed and cry till my husband gets home....or so I thought. My dear friend Paige is leaving me this weekend to move to California. She stopped by to drop some stuff off and we decided to go get dinner. As much as i want to crawl up into a ball, Im gonna miss her and her little one, so I decided to suck it up and occupy my mind while I wait for Greg to get home. 

April Fools ~ The fake pregnancy announcement.

I posted the below post on my Facebook yesterday. It got lots of shares, likes, and comments. I also received several personal messages from my facebook friends of encouragement and support, as well as a couple that felt compelled to share their "infertility" story with me. It feels great to know that I have so many that show compassion and empathy know that I am going through something they could never understand. As someone that has recently gone through an IUI (stay tuned for my IUI journal to be posted :) ) and could potentially be pregnant as I type it saddens me to look at other posts and see so many that do not understand and refuse to understand. I imagined what would happen if I posted a "april fools" joke today saying I was pregnant......and I imagined how hurt and devastated it would make so many of my friends and family when i revealed it was a joke. So its not just us "infertiles" that are hurt by this joke. Since Im not the type to engage publicly I decided to "vent" on my blog.

So here is my response to the post I recently read where several made comments like "get over yourselfs" "i dont care, post away" "its just a joke". Everyone is entitled to their opinion...here is mine:

Its sad to see that some don't realize the person they could be hurting but joking about it could be a close relative or friend. Luckily I have an awesome support group of friend and family that know although I dont often talk about the years of fertility treatments, the thousands and thousands of dollars spent, the pills, the injections, headaches, body aches, hormonal breakdowns, the emotional and physical roller coaster that I have been through (and still no baby), something like this is no joking matter. It is bad enough that we have to watch everyone around us have babies, and although we are genuinely happy for them, no one understands its not everyone else that makes us sad, its the disappointment in our own body, our own personal inability to conceive, our own hopes and dreams that have been crushed, that causes us pain. In the last couple years I have planned 4 baby showers, celebrated in births of so many babies, congratulated many REAL facebook pregnancy announcements, and I have vowed to never let my personal journey of infertility ever make me a bitter sour person or interfere with the way I treat those around me because I understand they could not possibly understand how I feel. I do not expect or want people to tiptoe around me and I will not go hide in the closet from the April fools days post or cry everytime I see one, nor will I have to because those that I choose to be friends with on have enough respect for me and those around them to realize what is funny and what isnt.........trying to fool the world on facebook as a Joke....not funny. You wouldn't joke about having or surviving cancer....aids...having a miscarriage or still born??,,,,,well infertility/miscarriage/infant death are medical diseases that affects more people than you know. Some want to compare it to posting picture of your dog/mom and hurting those that have lost a dog....would you joke about your dog/mom dying today?? We all handle things in our own ways, I just hope before you go and try to pull one of the most common April Fools pranks you are 100% certain the person(s) you are trying to fool wont be hurt by it. Besides, there are so many other "jokes", "pranks" and ways to fool people, be creative people.

My 1st IUI Cycle

Day 1 ~ Aunt Flo finally decide to arrive....I have never been so happy to see her, did a little happy dance in the bathroom. When I exited the bathroom coworker met me at the door and we did another little happy dance in the bathroom (poor guys in our office have no clue). I emailed my RE immediately to get my flow sheet set up (that is my schedule of meds, ultrasound and bloodwork). I was kinda hesitant to call Greg because I had been a bit moody the night before and I swore it was him and I knew the first thing he was gonna say was "told ya you were moody last night" lol.....Baseline ultrasound was schedule and flow sheet was set up.

This is my flow sheet ~ the pills were letrozole(Femara) ~ FSH shot was Follistim ~ and trigger shot was Ovidrel. Ultrasounds were schedule for day 2 and day 11. Looks like the procedure may be the 24th or 25th!!!

Day 2 ~ Had the baseline ultrasound this morning......well that was a miserable experience.....I was crampy. moody, and an ultrasound was the last thing I wanted. Poor ultrasound tech kept wanting to talk to me and I was just not in the mood to be social. I really wish my orders would have mentioned I didnt have a left ovary because that could have saved me alot of time and pain while the tech moved by "bowels" around looking for it before she asked if I had one.  Its bad enough I have the cramps but add all the poking and prodding..ugh...so glad that is over with!! The tech said all looked great, I had 8 follicles hanging out in there. Doctor emailed me instructions giving me the go to start the meds tonight. One the way into work, I brought donuts for everyeone...just a "please forgive me for the next two weeks or so" lol, just incase I get a little angry at times.

Day 3 ~ HOLY CRAMPS..........I did not miss these guys. Thank goodness I can still take normal meds this week. I think Im just gonna lay in bed all weekend.....oh wait gonna have to suck it up because its my little sisters birthday party tonight and we have a friend coming in town. I better double up on those meds today.

Day 5 ~ So Im trying to kick the diet sundrop/caffeine habit. I've limited myself to one per day, I bought my last 6 pack yesterday and vowed that after Im done with this I will not buy another sundrop.......this is gonna suck!!!! Ive limited myself to half a cup of coffee and have purchased decaf.  It looks like since I had my baseline ultrasound the doctor is skipping my day ultrasound so I wait till day 11 to figure out if my follicles are cooperating or not.

Day 9 ~ Kinds feel like Greg was a little to excited to give me my injections tonight....he definitely enjoyed it way to much!!! But honestly it wasnt bad at all I barely felt it! Anxious to know if this is working. I personally have been pretty limited in who I have told about having the IUI. Well my mom and Greg on the other hand..........I do understand its a bit different for them and that they dont fully understand why Im not super excited and telling the world. A small piece of me is saying this is going to work because it has to....and the rest of me is saying I need to stay realistic and realize the the success rate is not as high as Id like it to be and that there are some very strong reason why this isnt going to work. I have questioned my decision to do the IUI because although it was my frugal mind telling me to try the "less expensive" route, that same frugal mind it telling me I might have just wasted all that money......reality is there is nothing frugal about infertility..... but I got to stay positive because the last thing I want to do is tell everyone "we are not pregnant". I havent stopped them from telling everyone because I kind of feel like I might jinx myselft, kinda hoping that my body could not possibly let this many people down....I just dont wanna be the one to tell them....

DAY 11 ~  Ultrasound this morning!!!! Lots of growing follicles!!! I take my trigger shot tonight and my IUI is scheduled and we will be headed to Raleigh tomorrow afternoon!!!!!! Found myself searching pinterest earlier looking at nursery colors.....trying not to get to far ahead of myself but it is so hard not to think this has to work.

DAY 12 ~ We are headed to Raleigh. Been super bloated and kinda miserable since about 4pm. Guess that trigger shot is no joke and all these follicles are in turbo mode. Looking forward to also "getting away" for a couple days...just Greg and I. We have always enjoyed road trips, I know its not far but this is a special occasion and it will be nice for just the two of us to spend a little extra quality time together.

IUI DAY!!!!!!!!!!! So I did not read in the small print anywhere about the bloating and abdominal discomfort. I couldnt try to button a pair of pants right now if I tried and did not sleep well because I typically sleep on my stomach. I really hope this doesnt last long. Of course add all that to my anxiety of today, I am an emotional mess. While Im very hopeful that this works Im so scared it wont and all this time, money, discomfort will be for nothing. Im sure all these hormones have nothing to do with the fact I just wanna crawl in a corner and cry.....time to head to the RE office.

Sitting in the lobby waiting.....Greg is beside me SNORING....haha....we havent even been sitting here that long. Hopefully he doesnt snore to loud while Im having the procedure, because I wont be here to wake him up.

 

Procedure done!!! It was pretty short and simple. It was pretty cool when they showed me when the little swimmers were released (it was just a big blog of white). Now Im getting super crampy and just wanna go home and sleep. My phone is blowing up with well wishes, update requests, and just simple I love yous. Reminds me how loved we are but also reminds me of all those I do not want to let down. I know they will love me regardless but I know there are so many that want this just as much as we do. So now we have started our TWO WEEK WAIT... these next 14 days are going to be torture. I will try my best to keep my mind occupied and off of all things infertility. Gonna try to stay positive.

Dear Aunt Flo....

Your decision to delay your visit is not exactly assisting with my desire to start a family and is wearing on my patience. You usually arrive within 5-7 days, its been 12!!!

 It seems the one time that I anxiously anticipate your arrival you decide to take your sweet time. Typically you arrive right like clockwork. I apologize I have suppressed your visits for the last year, but I could not endure the pain and heartache you caused me every month. However, this time I get excited every time I think I feel my ovaries move or the slightest cramp. Unfortunately, that usually just turns out to be hunger or gas pains. This extra time is making my mind go 100 miles per hour, giving me time to rethink if I really want to go through this and risk more possible heart ache, risk having multiples, or risk financial hardships that I may not be ready for. The delay in your arrival also makes me wonder if there is something wrong. I have track your visits for the last 5 years and you have always been way more predictable.This time I welcome the cramps, bloating, and moodiness because I know it takes us one step closer to our ultimate goal of starting a family. So if you could expedite you arrival that would be great.

Sincerely
Me

P.S. Feel free to leave all of those horrible side effects at home.

Ready...Set....IUI

So I'm set.....but ready, that's another story. My fear of my body failing me has been very hard to ignore, I want this so bad and not sure I can handle failure. I get so excited one moment, but it is quickly taken over by fear. Fear of letting Greg down, our parents....Fear of finding out after these procedures that my body wont cooperate and I'll never carry a baby.  I question every thing in my life trying to find a reason not to do it so I can avoid a negative test. I've convinced myself at least once a day that we shouldn't do this....

But then I realize that I want this more than anything in the world and I won't know till I try. We have the most amazing family and friends that I know will pick us back up if this does not go the way we hope. I suffered probably the biggest heartbreak of my life last year losing my dog of 14 years, and I survived. It sucked and my heart was shattered but I am doing okay today.

So we move forward, I stopped my birth control on Friday so my Day 1 should arrive in the next couple of days and then the medications and countdown begins. I'm sure this will be the longest month of my life!!!! Stay tuned as I plan to document the next 30 or so days....and for those following that are in my everyday life - Thank you for your patience and understanding... I haven't been sharing every thing going on with a lot of people mainly because I do not want to have to tell everyone we tried..but it didn't work. So prayers and thoughts are appreciated during the next month and hopefully we will have some good news to follow.