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, April 30, 2009

I hate you endo!

3 cm endometrioma on my right ovary. Yes, I had an ultrasound 2.5 weeks ago and nothing was there. Yes, I just had surgery about 6 weeks ago. And, that is why I hate you endo. And, right ovary, I'm pretty pissed at you right now too!

Maybe they are wrong? That seems awfully big! The nurse thinks my RE will stay the course. But, I'm scared now. I don't know what to do! It'll just get bigger. Does that increase my risk for anything? What happens to it if I do get pregnant? What if I don't?

If they don't call, I'm good to go with gonal f tomorrow; but, I may call. Many more questions that I started out with.

I'm just pissed! Sorry if there are typos...I'm crackberrying this!

Wednesday, April 29, 2009

Icky Poo

So, really, how long should I bleed? I'm going on 4 days now, and, it's progressively getting heavier and heavier. I'm a bloody mess! What the hay? And, I just feel icky too. But, if these are "cramps", sign me up. Is this what normal people feel like during their period? But, really, is this my period? Or, am I just shedding blood after stopping the aygestin and starting the Lupron? If I am only on Lupron (20 units) until Friday (then go down to 5), I would think things should be "supressing" though? Trying not to over analyze, but, this girl has questions now!

I have my first US and blood work tomorrow morning. I guess I'll learn more after that. So, what are they looking for? How can they tell your ovary is suppressing? I am very much into researching and knowing what's going on, but, for some reason with this I have been a minimalist. I think the more information I have all at once, the more I get freaked out? At any rate, we are going to watch the Gonal-F and Menopur injection training videos tonight just in case we have any questions. If all goes well tomorrow, I'll start the Gonal-F on Friday, the menopur tentatively for Monday.

I think this post is one long pondering...

Monday, April 27, 2009

Can you inject incorrectly?

My hubby did the shot tonight and last night to get practice (since he'll be in charge of the progesterone ones). Anyway, tonight it hurt when it when in, and, now there is a little swollen mark at the injection site and is sore. Did we do something wrong? The only thing I could think of is, we are using my thigh; maybe I went over too far from the top and it was muscle? The other ones haven't hurt, at all. Not even a pinch!


Ovary pain was back today. Nothing too remarkable though. Only a few times upon movement.

Had to go to the derm, AGAIN. He squeezed and squished-no infection. Just random itchy whatever. I hate that they can't pinpoint exactly what is and what isn't. I got some more steroid-a different kind. Here's to hoping...

So, should I be spotting right about now (cause, I am, kinda)? I think she said that I may bleed. Really, things are starting to run together; I don't remember what's what anymore ;)

Sunday, April 26, 2009

Weekend recap

Nothing too earth shattering going on this way...which, is a good thing! I was having some pain yesterday, most notably when walking around my right ovary. I was reminded about how Lu.pron first surges the estrogen, so, I'm going with that as to why. I wonder how it's going to be when I get the drugs to hyperstim my ovaries. Oh dear. Today has been better, even after chasing my nephew and niece at the beach for an hour or so. Speaking of the beach, always carry sunscreen with you and don't assume someone else will have it. I have a terrible tan/sunburn to prove that point (I had on Tshirt and shorts-thank goodness I was pretty covered!). I'm hoping it doesn't get worse than it looks right now. That's the LAST thing I need!!!!! Just my luck.

Still struggling with one incision in particular-the one they used to see if they could cut into my belly button. Now it has this ring-worm type ring around it. Really?!? Really?!? Katery, does this sound familiar? You and I have had the same type skin things so far. ;) Going to call the derm tomorrow.

Just plugging along with the Lu.pron. Last night was my last night on Aygestin, so, we'll see how it goes without that "add back" type effect. Scheduled for my first US/BW on Thursday this week...

Saturday, April 25, 2009

Blogging from my crackberry

I wonder if this will work. Can't type too much-keyboard is too small.

Just had a thought today:
Right ovary type pain...where did you come from? And why?!

Having pain with movement today, in my lower right abdomen. Okay when I'm sitting. Walking is a bit uncomfy. Pain like some is pressing down inside of me. I say BE GONE!!! This isn't expected with lu.pron, is it? I wouldn't think so since my ovaries are being supressed...I never had this last time with the big treatment shots.


Thursday, April 23, 2009


I have a b*tchin headache tonight, but, it's because I went to the eye Dr. this evening. I HATE having my eyes dilated. It always lasts forever with me! I can finally see close up now without my eyes feeling like they need to cross. ;)

So, "Ouch" is for that, not shot#2 of the "good stuff". Although, I hesitated a little more with tonight's shot. JUST DO IT!!!

So, keeping this blog post short and sweet. I need to go get the Vitamin B and Magnesium...I hope to get a chance to do that TOMORROW!!!! I want to get it from a whole food/organic type store; I don't want all the extra fillers. Just the good stuff! Hoping it'll help stave off any weirdness in the ocular/migraine arena. I did have issues with that after 4 mo on Lu.pron-hoping just these 20 something units for just a week or two won't spark it. I used to get migraines all the time with BCP, thus the Aygestin to start out my regimen.

I'll be gone over the weekend OOT. So, I hope to have (really, nothing) to report on Sunday!!! Have a wonderful weekend!

Wednesday, April 22, 2009

Day 1-CHECK!

Lu.pron shot one...done and over. We did it!!! We did mess up a little on the doxy, no big deal though. We didn't take the first until this afternoon (I forgot it was twice daily, not two once a day). So, we'll just have one dose today and end on a day with one dose. No biggie.

First shot brought a little anxiety. Weird. I wasn't expecting that. But, it wasn't bad at all to inject. I am using my thighs for now since I am having issues with two of my incisions. That was my call; they said either way was fine. My RE took a look at them today and was glad that we were starting the doxy. She hopes that helps, and, wants me to go back to the derm to see if I need to start the antibiotic cream and steroid again as well. She really thinks it's because of a reaction to the dermabond. Just add it to my list. Both her and the dermatologist feel that it's okay to forge forward with the regimen since it's a skin only issue with the incisions. There is no deep infection...all just on the surface. I had similar issues last time with my belly button incision (it took about 2 months to clear up!). So, here's to hoping they are right!

I went in today for post op for my hysteroscopy. It turns out, they weren't "true" polyps. What she really should have done was start the conversation off with "benign" after she lingered over my path for what I felt was too long. I work in Oncology...you don't linger over paths like that...spit it out! ;) What she removed were just lumps of endometrial tissue in my uterus and in my cervix. Why? I haven't the foggiest. She didn't seem too concerned, and, I was just so relieved when she told me it was all okay. LOL.

ALSO, learned a fun fact today I wanted to share. To get a leg up on potential migraines, she told me to take a vitamin B complex and magnesium once a day. I'm very excited about this, and, hope it works!!!

So, any symptoms from today's shot I should expect? I've had Lu.pron and Aygestin (I'm taking that in leiu of BCP since I can't take BCP) before, but, in a much different manner (to treat my endo). Also, did you hubby's do your shots, or, you? I gave mine tonight. I know he'll be administering the progesterone ones though!

Thanks everyone for all of the support!!!

Tuesday, April 21, 2009

Tomorrow is the big day!!!

Welcome ICLW'ers! Is that a term? Anyway, a bit of background on my tale. I was diagnosed with Stage IV endometriosis last Feb (2008). My husband and I have been trying for over 2 years now to get pregnant. Little did we know we had such issues at hand! I've had 2 laparoscopies, the last one being about a month ago. Also, I had a hysteroscopy last week for some polyps that were found. We are starting IVF tomorrow!!!! I think that's that in a very small nutshell....

Things went well from last week's hysteroscopy. I didn't have any more problems after the initial wave of nausea. Spotting was minimal-much less than I anticipated! Glad that is all said and done! I go for my post op tomorrow. Though, I'm still having incision issues from over a month ago. How long did yours discharge? My belly button and and upper incision are STILL giving me such issues. I remember having these issues last time, particularly with my belly button incision. Seriously though, how many blouses will I potentially be ruining with this mess? And, is this normal?!?!

We start with Lu.pron tomorrow, and our antibiotic...I can't believe it's already here!!! How did it become the end of April so fast? We are very excited, but, also very nervous. A few weeks of the unknown are ahead of us. How will I react to the medicines? Will we be able to administer them correctly (some of them look a bit daunting)? Can my poor husband put up with me? Will my ovaries favor them? Will we have a successful cycle? Is this meant for us?

Here we go!!!!!!!!!!!
::Insert nervous anticipation here::

Friday, April 17, 2009

Is it sad they all knew me in the OR?

A lot of the same staff was there today as was about a month ago during my laparoscopy. I had a different nurse admitting me, but, otherwise, all where the same-anesthesiologist, surgical RN, and step down recovery RN. Too funny. They all recognized me. I told them I'd be back in a few weeks too. :)

The procedure went well. They ended up finding 2-3 more in there, and, removed them all and it took a smidge longer than anticipated (a little over 1 hour or so). So, I'm hopefully polyp free now and ready to roll. Cramping was okay after surgery. I went ahead and asked them for another round of whatever to calm it down. Glad they always ask about the allergies (I have a chart people). The 1st recovery room had me down for morphine, but the nurse said nay nay and got me something else.

I was there what seemed like all day! We got there at 10:30 and left at 4. The anesthesia they give you ("deep sedation") is basically just a step away from general. Like general, but without the breathing tube. I'm not sure why I was so out afterward, but, I was. So, finally I was up and they moved me to the step down unit where my hubby was able to come in and enjoy a few crackers and a soda with me. When they took the IV out, they/I didn't apply pressure long enough (don't tell me to get dressed at the same time people...I'm on drugs!!) so there is a nice little lump on my hand. I was assured this was just a bruise. My hypo self confirmed with my mom on phone on the way home (she works in a lab and knows these things).

Getting home was another story. I thought I was feeling like a million bucks until we stepped foot outside. I had to have the air cranked up to high and took deep breaths in and out all the way home. Thinking I was starving (cause I was!!!), I had some soup when I got home. When that didn't work, I took some phenegran and ibuprofen that we had on hand at the house. Then it was nite nite time. I just woke up feeling much better, although, exhausted now. Going to try to stay up a little bit and get something to eat.

I think I should be up and at 'em by tomorrow. They said to take it kinda easy. I can do that, and will! I'll be bleeding for up to two weeks, but, it should be tapering off bit by bit. Other than that, on pelvic restriction AGAIN for two weeks, and, will have a FU sometime around that time. I'll talk to the clinic on Monday, but, we should still be a go for 4-22 injections!

Thank you for all of the well wishes!

Wednesday, April 15, 2009

Word of the day-Hysteroscopy

I went in to the RE today for a mock transfer, which was basically done to measure my uterus and to see where to plant those beautiful embies in a few weeks. This was done by inserting a catheter. While this was pretty uncomfortable, in was in no way painful. I just got these really weird cramps and slightly nauseated. It pinched a bit (apparently some people can't even feel it) when it passed through my cervix into my uterus. VERY strange. But, all in all not a bad experience. I'm glad it was quick! I'm hoping the valium will help during the real procedure too.

Afterward they did a sonohysterography or saline infusion sonography. While the catheter was still inserted, they injected about 2 tbls of saline into my uterus. This allows the uterus to expand and allows for easier visualization. As they did that, they inserted the transvaginal sonogram equipment and took a peek. What they found next leads into the word of the day.

Apparently I have a polyp in my uterus. It's small, about 1 cm in it's largest diameter. But, it needs to be removed, especially for the sake of IVF. It can cause implantation issues with IVF and has a higher incidence of miscarriage in regards to IVF. So, here we go again. I'm having a hysteroscopy on Friday. This is considered a one day surgery procedure, under "heavy sedation" (much like for a colonoscopy or egg retrieval)...hopefully nothing more. They'll place a scope through the vagina eventually into the uterus. It should take about 15-20 minutes as long as there are no complications. So, please keep your prayers/good thoughts/whatever good mojo up for us. I'm so tired of being violated. After this, I will have been scoped in every orifice possible. ENOUGH is enough! They'll send it off to pathology to make sure it's nothing more than it seems, but, she said that's very rare and it doesn't have the qualities she would be suspicious of. Still, working in Oncology, I can't help to be a little wary, you know? But, she's not worried so I'm trying not to be either. And, I am thankful this was found today....not come transfer time!

We are still on track to start IVF meds next Weds. So, we'll see how it goes. Just another bump in the road...

Tuesday, April 14, 2009

You know it's serious when...

You get a big a$$ box o'meds delivered directly to you. Turns out since it was under a certain amount of mula, they go ahead and ship without payment. Also turns out they were stupid and called my work phone after 5PM yesterday. That's why I never heard from them. Crazies!!!

A camera does not do this justice! They did some pretty damn good packing, I must say!

So, what did I get? Some of this stuff I didn't even know about until today. I still don't really "know". I only have my schedule up to retrieval; note the "??" below for things I am not sure what's what:
  • Luprolide Acetate (ie, Lu.pron)- 2 two-week vials with lots of teeny syringes
  • 2 bottles (for me and hubby) of doxy(blahblahlblah) (20 pills each)
  • 2 gonal F pens with 14 needles each
  • 2 ovidrel syringes
  • Tetracylcine (??)-16 pills
  • Medrol-10 pills (??)
  • 3 boxes of menopur (TONS o needles) (??)
  • Progesterone in oil-2 vials (TONS o needles)-only know about this from other bloggers :)
  • Lots of alcohol wipes and a sharps container. I feel so "official"
Some came with 2 sets of needles...one to draw and one to administer? The other is one to mix and one to draw (I THINK that's what I just read). She told me not to get too overwhelmed with everything, so, I'm just kinda going with the flow and just took stock of everything that came in. The only frightening needles are the progesterone ones. WHOA.

I hope I did everything right as far as storage-I put the ovidrel and gonalF in the fridge (they came cold), although, the list said it could be room temp too. I may pull them out before use because I know they hurt less room temp! I've got my mock transfer tomorrow now. I'm bringing my list with me so someone can double check I have everything. I'll be sure to ask them about the temping thing too. I know some HAVE to be put in the fridge after opening, like the Lu.pron. I also need to see what's up with my old (stupid) Dr.'s name being on part of the order?!?! Oh no, they aren't getting ANY of this credit!!!!

How can one not get a smidge overwhelmed with such a shipment?

Monday, April 13, 2009

What does it mean?

When the mail order pharmacy is supposed to call you and confirm your order/collect payment for your drug shipment tomorrow...and they don't? So, should I be expecting anything in the mail tomorrow? I'm thinking no. I don't even know where to call to see what's up! They called last week and reviewed my order and said to expect a call today for tomorrow's (AM!!!) shipment. Things that make you go hmmmmm....

I got a magical pill called into the pharmacy for my YI. I'm ready for it to go BYE BYE!!! Oh, and, NO, you can't have a mock transfer, even when spotting. Well, spotting that requires a pad. The nurse said to assess the situation in the AM and call if I needed to reschedule.

AND, made a trip to the derm today for a FU. The impetigo is ramping back up...of course it is. Have to start using the anti-bacterial cream on all the incisions again. One of my incisions kept catching on my pants today because it was discharging. Awesome, right?!?!

I'm telling you, it was just one of those "whoa is me" type days. I think it's the hormones (and, lack thereof?)! I'm just tired of all the crap!!! Tomorrow is another day...

Sunday, April 12, 2009

Where did you come from...

Aunt flo? I wasn't really expecting you. Although, after further reflection I do think the RE said you could come, but, would be light (since I am on Aygestin and it thins out my endometrium). So far, so good.

That came over the weekend. Fabulous, right? And, since this is a TMI blog (if you didn't know that, I think you are in the wrong place!); should my YI be gone after the 3 day treatment the clinic suggested?!? Because, I'm still a little uncomfortable. I figured I'd see what it did overnight and go from there. I'm sure the clinic is expecting a message on their machine in the morning anyway.

I am scheduled for my "mock transfer" on Tuesday (or Weds-they wrote "Weds, April 14th"-which is actually Tues, so, I need some clarification on that). What should I expect? And, can they do it while I'm on my period? Well, I guess it's only really spotting at most. Just wondering.

Another ponder I had. What about sex during IVF? That may be a stupid question. I probably won't even be feeling it? My poor husband...first surgery, then complications, then my evil female burden. Again, TMI blog people. How else can I get my answers? Oh, I guess I could ask the RE...

I hope everyone had a wonderful Easter weekend. We definitely did-we got out of town and visited with family and friends. It was so GREAT to get away. Now, back to the grindstone...

Thursday, April 9, 2009

Evil female burdens

I went to the RE today for a look see at my incisions. It wasn't my RE, but, it was the RE who had seen the mess to begin with. They ended up digging (yes, DIGGING) some of the glue out of my belly button incision. A little fuzzy on the facts (because, frankly, someone digging in your belly button for 20 minutes makes you quite ill); something about the glue bubbling up underneath itself? Anyway, that is looking much better already. The other incision he cleaned out and he told me to start using the steroid cream again for another few days. Gladly. I was also the subject of a resident's learning experience today. Glad to help out. I bet he got all geeked out when he saw me on the schedule. I can hear it now, "You gotta come take a look at this poor girl". Whatever I can do in the name of science. :) They really are just so nice there though...they ROCK.

My evil female burden=yeast infection. Yep, I knew it. I wasn't diligent enough with the probiotics (should have taken them more than once a day) and the yogurt while I was on the keflex. So, itching again, just in another miserable way. Ladies, probiotics are your friends. I'm just sayin'.

Wednesday, April 8, 2009

Thoughts of the day

I've been having "internal struggles" about the surgery. On the one hand I am thankful for what they were able to do in terms of saving my fertility and getting that show on the road. On the other hand, I'm filled with doubt and concern that my all too familiar symptoms will quickly return, putting me back in the OR within another 13 months if we are unable to conceive. I mean, there was a lot that was left untouched. This disease really sucks. They don't know much about endometriosis, so, cutting it all away I guess really isn't a reality anyway, especially with my extent of disease. A lot of it is microscopic, and, even the microscopic portions can cause pain and symptoms as I have felt before. And, even if they peel my organs apart, there's nothing stopping it from coming back. Birth control has proven pretty effective as far as pain management goes with endometriosis, but, there is nothing out there long term that keeps it from coming back. And, I can't take birth control-it causes adverse reactions. Lupron (ack!!!) acts in keeping the endometriosis from spreading, but, it's only approved for 2 6-month courses over your lifetime. And, we saw how well that worked for me, right? So, yeah. I know I should be grateful, but, part of me wishes they could have done more. I guess there is always more to be done, and, I should just keep my head up and forge forward. Which, I plan on doing, but, sometimes you stop to ponder these things along the way.

Healing continues. One of my incisions seems to be reverting back to nasty stage. I will not hesitate to call tomorrow. I had one of the nurses at work look at it today, and she agreed. Ughhhhh. My belly button still has a good amount of discharge...and, it's veering on the revert side two. My others seem to be doing very well; I am definitely thankful for that. And, thankful that I can wear scrubs to work!!! Those have been a lifesaver this week for sure!

Friday, April 3, 2009

19 DAYS...

The appointment went well today. It was a whirlwind of information. But, good information!!!!

First of all, my stomach is healing nicely. I'm going to start tapering off the 'roids soon and start using vitamin E to help promote the healing and diminish the risk for scarring. I don't think scarring will be too bad from everything that happened-the raised infected/irritated skin is giving way to smooth, albeit raw, skin underneath. Still a little itchy...I think it's less of irritated itching now and more of the "healing" kind of itch. Ya know?!?!

My endometrioma was ideal...meaning it wasn't stuck behind my uterus wedged in between that and involving my colon as she had suspected from the ultrasound. It was just sitting, right there, easy to access. It was HUGE!!! She was able to take that out and take out the cyst wall and put an adhesion barrier over that healing ovary. She said it dissolves; i'm not sure how long, but, it gives it a fighting chance to heal itself. The lighted stints on my ureters were a HIT-very good thing with as much endo as I had. My tubes are a swollen mess, but, they were not blocked or causing any danger to me, so, they were left in tact. The GI was able to remove a lot of the endo sitting on my colon-there was nothing penetrating. There was extensive endometriosis (not shocking), and she said she obviously was not able to get to it all. This surgery was done in respects to my fertility. So, she did what needed to be done, without overdoing things, put simply. The goal of this surgery is to conceive...so, hopefully that can get done!

So, after the surgery chat, we talked a little more and got a layout of when IVF is going to start, and have a better idea how the next two months will go. IF everything goes well (I'm going in this with the utmost positive attitude), we are looking to know something by the beginning of JUNE! She is a little concerned giving my past sensitivity to medications, but, I've never had (most of) these before, so, you never know.

I've promised myself to stay away from google. But, I told my hubby I will be relying on the wealth of blogs and friends out there for support and information as I go through this, as a lot of you are going through it all as well. And, I will blog here about our experience in hopes to help someone else.

Lots more information to type, but, I think this is all I can logically rattle off right now. WOW! Lots going on in my mind. Very excited, but, trying not to get to excited at the same time, especially as I continue to heal. The prospects are very exciting, and, I feel blessed to have this opportunity.

Start date for Lu.pron is 4-22! (Yes, Lu.pron...ick) I'll continue the Aygestin up until that point (and a few days beyond). More about that later!!!!

Thursday, April 2, 2009

IVF questions for our RE?

In preparing for tomorrow's follow-up with our RE, any questions you can suggest that we should be thinking about or should bring up tomorrow in regards to IVF?

Wednesday, April 1, 2009

Since I am on the definition kick...

I was thinking about my post op today (which is Friday) and was thinking about everything I gathered from my family. One thing that sticks out to me is this "adhesion barrier" that was placed on/over/near my ovary. Seeking information, this is what I found out today. I guess on Friday I'll get more specific details, but, in the meantime, this is so interesting. I didn't know such things existed. Click here for more information.

Feeling better and better it seems. My stomach is finally showing visible signs of improvement. Slowly, but surely. Now, this prednisone is surely affecting my sleep. But, I am so thankful not to be in such misery I was in a few days ago!!!! I'm ready to jump back into the world (mostly out of being so tired of sitting around), but, promised my Dr. I'd take it easy a few more days. She called today-my RE. She's been OOT this whole time and was horrified about my reaction. She too (as well as the derm) thought it was a combo of the adhesives and betadine (given my previous iodine sensitivty). She wanted to call to check up on things and said she'd take a look on Friday and was anxious to start looking forward. Me too!!!!

I am not going to be cleared for work until after my follow-up on Friday, which, is okay with me. I'd be more comfortable with someone looking at this again before I return anyway. I hate being away for 12 days from work, but, I know it'll be fine! I need to look after me first!!!

We've been gearing up for IVF. We'll learn more about that too on Friday, and get an estimated start time. Before surgery, my RE said that if everything went well with surgery (I dunno if this infection will impede) that we'd be looking at starting the Lupron in late April, with transfer possible by the end of May!!! So, we'll see. I've been looking at a lot of IVF blogs. They are so helpful...much more so that this confusing book the clinic gave to me. I mean, the book is okay, but, it's just a bunch of meds and risks, etc. Not a real world look into the everyday life of this 6 week process of creating what I hope to be a wonderfully healthy baby.

I must admit, with recent incidents and allergies, and knowing my sensitivity to medications, I'm a bit nervous. But, I know if I don't try, I will have regrets. We'll see where we are in a few weeks, but, this is where we are headed so far. Lots of emotions, financial decisions, and preparations to make. An exciting but scary time indeed. And, we need to be prepared to look into the future, no matter the outcome. Will we try again? How many rounds are we willing to endure? What is too much?! We've talked and thought a lot about these questions, and more, and are prepared to make these decisions. I think these are important...if for nothing else, our sanity!!!

So, hopefully soon this blog will turn it's efforts to our IVF journey, in hopes of conceiving with stage IV endometriosis. Stay tuned! In the meantime, I will focus on getting better and moving on past this 2nd laparoscopy. I'm ready!!! But, sometimes these things take time. Oh, and to address all the responses about how calm I've been...I'm glad I appear to be. ;) Some days are/were so frightening and frustrating. I'm trying to keep my head up and forward. I really appreciate all the comments, well wishes, and those that were able to relate with this with their personal experiences. It's awesome to know it gets better. I just have to be patient. That is really hard for me sometimes. That word is going to be hard imprinted in my vocabulary soon, I'm sure, so, better get used to the thought of it!

All for now!