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!

Tuesday, June 30, 2009

Nothing much to report

Just as I suspected, nothing much, clinically, going on with my incisions. Apparently this is my normal? She did a physical exam, which I was thankful for (at least I didn't just get the glance over). They are so kind at the office. She didn't make me feel stupid for coming in; she actually validated my concerns and listened. But, when it came down to it, there was nothing much to report. There wasn't anything palpable on the exam. These things I am thankful for (no signs of infection); everything seems to be skin deep. But, as to WHY I am at the recovery level of a patient 3 weeks post op at 3+months out-we don't know. Luck of the draw?

I was able to deduct a certain bathing suit to my recent flare-ups. It's a one-piece suit (to avoid the sun to that area), but, maybe it was too tight and trapped in moisture for too long? I have tankini's I can wear now to try. I kinda don't even want to be out in the heat!!!

The RE said not to put a THING on it...and just see how it goes for the next week or so. No steroids, no creams, no oils. Just mild soap and water to wash. She also said that a flare up after a steroid is not unusual-it's called rebound. So, maybe coming on and off steroids is rebounding? Doesn't explain the belly button. But, there was no pus to be seen-again, no infection.

So goes my days. Unexplained case study.


I cannot BELIEVE I forgot to tell my RE about these "bug bites" that I get around my incisions. It hasn't happened in a long while, until this recent flare up. Near my incisions sometimes I'll start having random, intense itching. When I inspect it, there is a mosquito bite looking thing near the incision bed. Like, the white raised skin you get just after you get bitten? That's what it looks like!!! Ugh. Anyway, I got it last night near my lower left incision...and tonight I had two in my belly button next to my incision there and one again near the lower left. W-T-F?!?! I feel SO stupid calling back about this, but, I need to. Seriously, so stupid. "Um, I forgot to tell you I get these bug bite looking bumps that come and go within an hour or two of surfacing. What is that about?". Ughhhhhh.

Monday, June 29, 2009

Apt with RE

I have an apt with the RE tomorrow. We'll see how it goes. My two troubled incisions have been on their best behavior today. Of course they are. So I look like the crazy patient with nothing that is obviously wrong with her. Is it wrong that I am wishing my belly button to pus up again for my apt tomorrow? Probably. I'll just have to stress their pattern and just tell them what I know to be true.


Sunday, June 28, 2009

Itching in fun places and oozing...awesome

Awesome title, right?!?!?

Yeah, so, still itching. It's really mostly external...pretty sure it's not a yeast infection. I've been taking grapefruit seed extraction though to fight off any yeast. SOMETHING is going on. My belly button today had a wonderful surprise-a pustule full of puss (that may be an oxymoron), that eventually ruptured. Seriously. I had surgery MARCH 20th. I am beside myself. I don't know what to do! I got a 2nd opinion from another derm...they didn't have much different to say. Talked to the nurses at work and they thought a wound specialist was too much. So, I'm stuck. Going to call the derm tomorrow and let him know what's going on. Puss filled belly button (I hate this incision, it's got divots which allow stuff to get trapped...I kinda wish they could cut it back open and re-do the stitching!!!) and the left upper incision troubles. It was looking better, but, of course it's back to it's crazy ways again. It was completely closed and now I'm back to a scab which will soon be open, as is it's past pattern.

Next thing the derm wanted to try was an injection right into the incision (now incisions). Awesome. We'll see how it goes tomorrow. Ughhhhhhhh. I really really really wanted this taken care of before the next round of IVF. I'm not sure what to do now. I know I need to try to beat out this endometrioma, but, I want this taken care of. They told me before that it wasn't a big deal because it was external, but, with recent happenings, I feel that it is more than just skin deep.

Friday, June 26, 2009

I've been a bad blogger

I've been kinda taking a break from blogging lately. I just need a little break from my endo world before my next IVF cycle begins (as much of a break as I can get!). I probably won't be on much next week. I hope to try to stay connected with your blogs, but, unless there is something a rocking this way, I hope not to post much here.

Just a few updates:

So, there are some interesting connections I am making with my body, but, don't know what to do or who to try to get to help make sense. My incisions (my lower left this time) starting flaring up randomly one day this week. The NEXT DAY I started itching "down there". I don't know that it's a yeast infection, but, maybe a yeast response or something inflammatory? This HAS to be connected. The day after the itching started, my belly button incision flared up too!!!! Two incisions that seemed to be laying low, all of a sudden itchy and a little puffy?!?! I'm sorry, that's too coincidental for me!!! I went and got a supplement a friend told me about that is supposed to help with yeast type issues, so, I figured I'd try that for now. Crazy, right?!?!?

Also, I've been spotting ever since about a week from starting the Aygestin. It was pretty heavy at first, but, now it's just every now and then. I've never had this problem with Aygestin before. It's not so bad anymore, but, just more annoying.

My pain seems to be better on that right side. I don't know if when the bleeding was heavier it was that fluid draining off or not. I don't even know if that is possible. At any rate, it seems to be doing okay.

So, that's me in a nutshell. Hope everyone is well, and, sorry I've been so slack this ICLW!!!!!!! I'll try tonight :)

Sunday, June 21, 2009

ICLW time again!

Welcome ICLWers! Just a quick snippet of my blog:

I'm 29 and I have stage IV endometriosis.

It was an interesting battle to get diagnosed, but, I had my first laparoscopy in Feb 2008. After a course of Lu.pron for treatment, I was back to square 1 by Dec of the same year.

I had my 2nd lap for my endo in Mar 2009, and a hysteroscopy in Apr 2009 to remove polyps.

We've been TTC since Apr 2007. We went through our first cycle of IVF in April/May 2009. My right ovary wasn't much help (it didn't produce any viable eggs)-my endometrioma came back 6 weeks post-op. Fortunately it was relatively easy to drain during my egg retrieval, and, it hasn't grown much since then. But, it's lurking; we are racing against time to get pregnant before it causes another surgery.

Our first round unfortunately ended in a miscarriage. Our 2nd round of IVF is coming up, beginning the supression meds July 8th, and, hopefully with a very successful and sustaining BFP around August 10th. We are VERY eager to get started!!!!

Thanks for visiting and I look forward to reading your blogs!!!

(Just in case you're not familiar)
What is Endometriosis?

Endometriosis is a painful, chronic disease. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices. The average time to diagnosis is about 8-10 years!!!!

Tuesday, June 16, 2009

Good news! (?)

So, I had my US this AM to help ease my fears about the endometrioma being back and bigger than ever. Well, there is no visible mass!!! Say what?!? Guess the draining helped!

However (since I know we all love caveats), I do have a bit of fluid hanging out around it. What does that mean? I haven't the foggiest. The clinic staff doesn't seem terribly concerned about it being there (perhaps this is normal post IVF?), so, I'll try not to be. I know that endometriosis can cause such ascites as well, so, might be "normal" for me. I'm supposed to monitor my pain and symptoms and let them know if anything gets worse.

My RE isn't in until next week. Maybe she can provide more insight. Until then, I will celebrate the magically "shrinking" (ie, drained) endometrioma and hope it has a long delayed return!

Tomorrow I have an apt with the Derm in the seemingly never-ending battle with that pesky incision. This last course of prednisone helped, but, its back a with a scab (it was closed) and itchy inflamed. Little bastard! Go AWAY! I have one model healing SCAR that the others need to learn a thing or two from!

Sunday, June 14, 2009

Blogging in bed

Blogging in bed tonight from my crackberry. I've had shoulder and diaphragm (right side) pain going on all weekend. It's hard to get comfy to sleep. The only relief I get is laying on the painful side. Unfortunately that aggravates my shoulder too.

Before when I was having these pains, I thought maybe it was all from my shoulder. But, my PT didn't seem to think so. Then my thoughts wandered to my endo. They looked for diaphragm involvement in my last surgery. I don't necessarily think its that, but, I do think it has to do with that endometrioma on my right ovary and inflammation responses from it! I've also been kinda nauseated recently. Welcome back old "friends"?

Before I order my meds, I'm calling to request an ultrasound. Just to be sure that this thing isn't already getting out of hand. Think my curiosity should warrant that?!

Saturday, June 13, 2009

The "Plan"

So, here's our tentative schedule for our next round of IVF:

Started on Aygestin 2 days ago to help keep the endo at bay
July 8th-Lupron Injections
July 11th-Stop Aygestin
July 16th-Baseline Ultrasound
July 17th-Start Stims
July 27th-Egg Retrieval
July 30th or August 1st-Transfer!
August 10th-BETA!!!!!

Looks like we *might* be able to squeeze in another round out of our insurance. The meds will definitely be covered. We've only used $3,600 of the $10K max. The fertility coverage is another issue. Looks like the adjusted cost charged to the insurance was around $6,400. I am pretty sure that includes ultrasounds, visits and blood work as well, which does NOT count against our $10K max. But, my hubby and I are assuming that's the total charged against our maximum. So, we may be about ~$5K out of pocket in the end. Time will be the judge of that, as things SLOWLY go through to the insurance company. I'm thinking it won't be nearly that much, but, that's what we are going to assume to be "safe".

We decided NOW was the best time though, because everything else is being covered 100% since I've met all my deductibles and co-insurance. So, it pretty much evens out IF we have to pay out of pocket. I dunno WHY they make insurance so difficult to understand!!! I've learned a lot during this process though.

If this round doesn't work, then I'll change insurances during the open enrollment period in October to my insurance at work. They have a $25K max for fertility!!!! A girl I work with got 3 rounds of IVF out of hers and only paid about $500 out of pocket each round! We'd change to that to do a frozen transfer. We've already discussed our maximum number of tries we are willing to endure. That MAY change, but, we've decided 3 is enough. The 3rd would be the frozen transfer. Not just physically, but, mentally I think that is about all we can take. So, we are really hopeful that this one will work and we won't have to worry about another round!!!

I'm eager to get started, but, we chose to wait until later July to see how everything would pan out with the insurance. And, we needed a little break!!! So, while we wait, we plan on enjoying fully our non-shot filled evenings. Although, we've run into a bit of a snag in our house...we've found more mold maybe, so, we are trying to get that taken care of and the new flooring laid down before July. Time will fly I'm sure.

I've been feeling "okay". Mornings are rough for me...as it usually is with my endo. Things had been fine since surgery, but, I think the IVF meds kicked things up a bit. I feel nauseated and just icky in my stomach every morning and in the evenings. Mid-day is usually pretty good. It's so strange that my endo symptoms are GI related during the whole month...then definitely girl part related during my period. I won't have another period (THANK GOODNESS) before the next IVF cycle since I am on the Aygestin. I do have random pains on that right ovary-it's back, I just don't know how big. I'm not sure I want to know!!!

Thursday, June 11, 2009

A little mid-week humor

I forgot to post this. This about summed up my "mood" about my party being canceled. And, well, my potty mouth too. PERFECT card from the hubby!!! Click on the picture for the full effect ;)

Wednesday, June 10, 2009

Update with RE

So, today was our big appointment with the RE. She was obviously disappointed, yet, optimistic. My hubby and I had already talked and decided we would do another "fresh" cycle soon if that's what was suggested. Indeed it was. She actually said we could take our time if we needed, but, with the looming endometrioma we all decided that sooner would be better than later. The last thing I want right now is to have to go back to surgery!!! I know it's back (after being drained), I can feel it. No one should be able to pinpoint where their ovaries are!!

The frozen transfer wasn't suggested at this point; she said they'd like to have at least 1 more embryo to go with our little guy in the freezer, since the frozen transfers have less success rate. Hopefully with another cycle we'll be able to secure a friend for the freezer.

So, we are waiting to see what's going on with the insurance, and, we are tentatively scheduled for the end of July to start round #2. We are pretty sure that the insurance will cover another round, but, need to be sure. NOTHING for this past cycle has posted to the insurance yet. The RE said that was a really frustrating thing about their clinic being associated with a hospital-the billing processes have to go through like the hospital's, and, apparently that takes a while. If for some reason we don't work things out with the insurance, it'll be sometime this fall. Which, isn't too far away, but, for my endometrioma, that could be like years for it...

She was pleased with how the cycle went (aside from the outcome); my ovary responded well. We didn't expect anything out of the right, but, the left one came to bat nicely. She said that 7 was a good number of eggs, and that the 4 out of those being mature was pretty good too. Obviously we'd want both ovaries kicking in, but, again...damn that endometrioma.

Speaking of the endometrioma, she said that it was very easy to drain. Almost too easy, and, that she fears that mean it will fill up just as easily. Gotta love that ;)

We talked about my pain. The meds worked to really thicken the lining of my uterus (the endometrium), so, that's one of the biggest reasons it was so painful for me. She said the endometrioma could obviously have a hand at it as well. She said the hormones and everything with having conceived then going to my period were probably a little much for me as well. I'm going to start back the Aygestin this evening in hopes of warding some of the pains off. I'll continue that right into the next IVF cycle.

Sorry this is choppy...lots of information and I have a killer headache right now. My stomach feels like it is inching SLOWLY back to some normalcy. I'm having my GI symptoms again-early satiety and digestive issues. Oh endo, you suck!!!

So, there ya go. I've been kind of taking a blogging break as my hormones try and level out. It's been a very emotional few weeks. I've been up and down, and, on the verge of tears most days. I'm looking forward to a little normalcy in the next month as we are on this little break.

Thanks again for all the well wishes! Oh, and the Bday greetings too!! It ended up being a great day, and, I am thankful for that!!!

Saturday, June 6, 2009

Thank you

Thank you blog friends for letting me throw myself a pity party! Sometimes we just need that.

The pain is soooooooooo much better tonight; it's like night and day! Not bleeding as much either, so, I guess this production is coming to a close. Hope so anyway. Still tender, but, I can hang with that. We decided last minute to go to the concert, and, I'm so glad we did! It was just what I needed to snap out of my woe-is-me funk that has been the past few weeks.

One day and step at a time. Thank you, really! I need this outlet (ie, blog)!

Not a bad shot from the cell, right? It's the big screen. We did get $10 upgrades to actual seats though. Thank GOODNESS because the lawn was CRAZY packed!

Hubby and I :)

My big busted Bday plans

Thanks endometriosis, for ruining my plans this weekend. I missed the Dierks Bentley and Brad Paisley concert last night (and my killer seats!). Tonight is No Doubt; still am not sure I'll make it. The pain last night was astounding; it's MUCH better today, but, I'm still feeling tight and sore. The lortab is okay; it's not helping the swelling/bloating though. I've been taking small doses of ibuprofen as well.

We had a B-Day BBQ at the house planned for tomorrow. I made the call to cancel that. I didn't want to have to make a last minute decision since people were bringing sides. Monday, my actual B-Day, we were supposed to go to Carowinds, an amusement park. I'm thinking that won't happen either; all that thrashing around with tight harnesses on my belly. I'm really really bummed!

My website is "I Am Not Endo", but, sometimes I am. And, I hate it!!! I hate missing out on life because of my pain!!! I'm even more bummed because I had surgery 3 months ago for this mess. I know that the hormones from IVF and my early miscarriage probably aren't helping, but, wow...I never imagined this. Did the hormones make the endo inside worse? Or, is it the hormones that are just out of whack? I could definitely feel my endometrioma this morning; it's an indistinguishable pain. This pain leaves me feeling confused and unsure. Is it worth it to try IVF again? If the outcome is the same next time, I'm not sure I can handle the pain (emotional and physical). Will this course cause me to have surgery sooner than without it? Lots of questions dancing around in my head. Stupid endo. I HATE YOU!!!!!!!! I don't want you to define me...but, sometimes, you just bust up in here and take over. I won't let you win the overall battle though...I just can't!

Friday, June 5, 2009

Lortab-will you be my friend?!

Cause I really need one right now!!! We'll see how this goes. Had to take the rest of the day off. Wish me luck!

Eff you endo!

Daym. This is some serious business with this period. Ibuprofen 800 and tylenol aint cutting it. I'm waiting until 8AM so I can call to request something else. Usually this NSAID works okay for me. But, the 8 hrs in between doses is too long and completely negates it's effects. I managed to sit like a blob at work yesterday, but, I'm not quite sure I'll be able to hang today. There is a concert tonight...I hope I can make it to that! My friend bought me the tickets for my bday!!!

Hoping the worst has come and is leaving now. I wonder if this will be a longer that usual period with all that's going on inside...I hope not!!!

Wednesday, June 3, 2009

Not sure why I was looking forward to this...

Is it over yet? Cause damn, the crampy pain is brutal. Its not full throttle stab pain, but, that constant, horrid cramping that is endo sometimes. Can't sleep right now. If the pain meds were every 6 hours, I think I'd be fine. Calling tomorrow to see what I can take between each ibuprofen mega pill. Hopefully the worst has passed? My back even is sore this time. That never usually happens. Icky!!! My heating pad isn't long enough!

Shoot, I'm on those steroids too! That might better explain why I'm still up. Son of a gun!

Tuesday, June 2, 2009

Here I go, here I go, here I go again...

Girls what's my weakness? Damn period. ;) (I just heard Salt N Pepa on my Ipod the other day, I love that song!) No, actually, this time I am looking forward to it. I *think* that it's starting to come about. We'll see. I need this "closure". Without it, my body is playing mind games on me; I feel guilty for EVERY action I take. Be it the sushi on Friday night or a glass of wine-to the steroids I started taking today (WAHOOOOO!!!!). It's just been really hard. I just hope it's over, or at least it's worst, by Monday so I can enjoy my day of birth!!!

Each day is getting better and better. I have my moments, but, I'm ready to move forward. Looking forward to our appt next Weds.

Okay, so, who's ready for the weekend? My motivation has been NIL since last week. I need to get with the program!!!