The In's & Out's of Endo

The (Endo) 10 Commandments!

2010-11-24T09:27:00.000-08:00

I just got these in an ERC News email from the Endometriosis Research Center and thought I would pass it along... heaven knows dealing with Endo is stressful enough, but add all the holiday season craziness and some days its just too much!

Number one: (and most important of all) Thou shalt remember that thou art the most important priority! If you are no good to yourself, you won't be any good to anyone else.

Number two: Thou shalt make a list - and check it twice. Planning and organizing is a sure-fire way to avoid adding extra stress to your day - if you need to go shopping for gifts this season, make a list of all those you are buying for, what you plan to get, and what locations you might be able to purchase the items at. Also - allow yourself plenty of shopping days! Don’t wait till the last minute.

Number three: Thou shalt remember that thou art not superwoman. This calls to mind a dear endosister, whom we'll call "J"....J. has a superwoman cape that she wears daily. As superwoman, she is mom, wife, businesswoman and world problem solver every day. The holidays make it worse. Many of us have our very own superwoman cape hanging in our closets...we have to learn that sometimes, it's ok to take them off. Do what you need to do for yourself and your family; don't take on extra tasks and responsibilities that someone else can - and should - be doing. For further reference, please see number one.

Number four: Thou shalt learn how to relax - and make it a priority. Relaxing offers so many benefits! First, it gives your body an opportunity to heal from the day's events. Rest makes for a stronger body, and a stronger body makes for a higher resistance to stressors. Meditation, breathing techniques, aromatherapy, massages, hot baths, imagery and good old-fashioned sleep are just a few ways to relax. Put it on your schedule if you need to!

Number Five: Thou shalt not drag thyself to the mall if thou cannot rise up off the couch. If you are healing from surgery, having an especially hard time with your endometriosis, or are feeling just altogether horrible, remember the true spirit of the holidays...giving. "Giving" does not mean purchasing, wrapping and then giving; it means giving of yourself and your time. If you are unable to get out and about, invite your loved ones over for some quality time (if you feel up to it!). If you have children, spend time with them doing one of their favorite (low impact!) projects. They will appreciate it more than any gift Santa can bring. If you're feeling well enough, make and wrap up something homemade...cookies or other baked goods, collages or other artwork, a heartfelt homemade card or poem. And - there is always internet shopping!

Number Six: Thou shalt grieve if thou needs to. The holidays can be really devastating to someone going through infertility, who has lost a loved one, or who has suffered through any traumatic event. Remember that it is ok to give yourself time to be sad if you need to be. Don't be afraid to seek professional assistance to help you cope.

Number Seven: Thou shalt watch thy diet. We’re not talking about waistlines; we’re talking about the food and drinks so many of us strive year round to avoid because we know our symptoms will be "kicked up a notch," as Emeril says. During the holidays it seems that everywhere we go, we are handed foods and drinks – literally on a silver platter - and encouraged to eat to excess and drink to elevation. Ask yourself if the pain you know you will experience as a result of ingesting foods and drinks you don’t normally tolerate well is worth it.

Number Eight: Thou shalt not sweat the small stuff. And, as a very wise person once said, "it's all small stuff." So what if you didn't get that angora sweater you promised your sister for a gift? Give her something else she'd value even more - another gift choice and your subsequent good health for not having worried yourself sick about it!

Number Nine: Thou shalt call thy healthcare practitioner if thou feels thou needs some extra medical care this time of year. Don't put off getting or keeping an appointment with your doctor because you think you have to go cut down a Christmas tree by yourself...the tree will still be standing there an hour later, after your appointment.

Number Ten: Thou shalt refer to Number One at all times!

Yup, still here.

2010-10-30T12:19:00.000-07:00

Wow, its been ages... again. Not much going on which is why I haven't posted in months. Life is pretty quiet (thankfully) on the Endo front... this Mirena thing is absolutely fabulous. I really can't say enough good things about it. I'm almost 18 months out from my last lap and I'm doing GREAT! I won't lie and say I am 100% pain free, but really I can't complain. Other than some cramping about 2-3 days out of the month and the random twinge here and there (usually on my right side, as always) I'm doing exceptionally well. I am very blessed that I am one of the lucky ones whom the Mirena seems to be working out for.

A few months ago I had to see my doc though about some bladder issues that I've been having. Me thinks interstitial cystitis... my doc seems to agree. I haven't gone to a urologist just yet as the symptoms haven't become bothersome enough to go through all that testing and discomfort. I was given a list of things to avoid (diet and drink-wise) and I have found that as long as I'm good this keeps the discomfort at bay pretty well. The Flomax didn't do much for me though. Oh well, we'll see how things go.

So... that's it, I guess. Ho hum, life is boring, yes, but for once I'm thankful for that!

Got Spit?

2010-07-16T12:57:00.000-07:00

If you do, would you mind sharing it with the good people over at Juneau Biosciences? They are currently researching the genes that play a roll in predisposing women to Endometriosis. I heard about their research and got really excited to do my part, especially since all it takes is a little spit! I've put up a banner/link to their website on my sidebar, but here it is again for easier access if anyone is interested! End To Endo!

Here is the package they sent me with the collection material, and paper work.

Spit, spit, spit! It looks like a whole lot but actually you just fill to the line and the rest is a preservative. Took me about 3-4 spits to hit the line.

All done! No postage required even! :)

Here is a video about this research and your part in it, should you choose to participate.

1 year post Lap (#2)

2010-05-30T20:32:00.000-07:00

Ok, so the year mark for my 2nd Lap isn't until Tuesday, June 1st, but as I'll be working one of my 12 hr shifts @ the hospital, I doubt I'll get on and blog afterward. Plus, the blog was in serious need of updating, so I thought I'd kill 2 birds with one stone tonight.

Here I am, one year out from my last surgery and I have to say, I feel pretty dang good! The verdict on this whole Mirena thing is that while the first few months were a bit onerous, I do not regret it one bit. This lovely contraption has pretty much stopped my periods all together (with the exception of a few days of spotting every once in a blue moon) and I haven't been in any considerable amount of pain in so long that I can hardly remember. Have I been 100% pain free? No, obviously not, BUT have I had to take anything stronger than some Advil every once in a while? NOPE and that's a miracle, considering how I was dependent on Percocet and Zofran to even be able to function this time last year... phew, I'm glad that's in the past.

How long will this blessed break from h*ll last? Who knows, but for now I will certainly take it! I know its just a temporary fix, but for me it has worked a whole lot better than all the gazillion other things/pills I've tried in the past. I'm also aware that it probably doesn't work for everyone, but I'm glad it's done what it's done for me. Hopefully things will continue this way until we are ready for IVF and can get this little sucker yanked!

Lets get this party started!

2010-03-01T08:53:00.001-08:00

Happy Endometriosis Awareness Month, ladies! I hope this March will bring lots of info to lots of new people!!!

On a personal note, my right side pain has been flaring up lately and has caused me a weekend full of yuckiness, pain, nausea, nausea, and more nausea. Blegh! Today is just one of those days I wish I could just stay curled up in bed with my pups... too bad I have lab/class in an hour :(

It's working!

2010-01-22T09:03:00.000-08:00

While I still have zits like a 13 year old, I have to say that as time goes by I am loving my Mirena more and more! AF came this month and lasted 2 days. TWO days! Not only has it been the shortest AF in recorded Alex history, but it was barely heavy enough to warrant much more than liners! Perhaps I will get to the point where I no longer have them at all! I didn't believe this when my doc said it happens frequently but I am starting to hope now!

Pain wise I am doing great! I still get the occasional cramp and/or pain in the right side but nothing a little bit of Tylenol/Motrin can't fix. I am about 7 months out and I have to say I am really happy with our decision to try the Mirena for a while until we can start IVF. I know it doesn't work for everyone, but so far for me it's been SO worth it! (Yes, even the zits!)

Hello again puberty... now go away!

2009-11-30T16:55:00.000-08:00

So I feel stupid complaining about this given how much the Mirena's pro's outweigh it's con's (at least for me thusfar) but seriously... it bugs! I have never had the absolute clearest of skin, but I've never had any real acne problems either. Even puberty wasn't extremely terrible... just your average case of the teenage zits for a few years and that was it... until NOW.

I feel like I've fallen down some sick twisted dermatological time warp! It was really bad right after my Lap, but I figured it was my body getting used to another hormonal shift. I thought it would go away after a month or two... or three? But here we are 6 months out and my face looks like a 14 year old's. Argh... Thank goodness for Neutrogena, it's the only thing that seems to be keeping it in check... well, somewhat.

*Sigh* I suppose this is an acceptable price to pay for less pain, annoying as it may be. Maybe another 6 months? :P

BOO!

2009-11-03T12:08:00.000-08:00

Scared ya, didn't I? :) Well, it's been so long I wouldn't be surprised if no one even bothers to check my blog anymore, lol. Thanks Jeanne for sending me that note! :)

So wow, it's been what... 4 months?!?! Geez, I'm such a slacker! Well, so here I am 5 months post-op and feeling much, much, much better! The Mirena took me a while to get comfortable with. I'd been warned about the random spotting and cramping and yes, it certainly did happen. The spotting wasn't really a big deal but the cramps were killer. I still have strong ones every now and then, but certainly not as regularly as 1-2 months post-op. I seriously felt like I was trying to birth the dang thing... I was told this would probably last 4-6 months, but it went away by about 3 months. So really, no biggy. AF is very light these days and like clockwork, its so nice! I heart the Mirena, really, I do! :)

Post-op life has been hectic. I'm in school full time and working as well. I will be applying for the RN program here in a few months and so I've been working hard to keep my 4.0 GPA to snag a spot since its very competitive. I'm also about to complete my CNA certification and am currently job-hunting for a position in our metro hospitals. Life is busy, but I'm having a blast!

All in all I'm feeling really good these days! Every once in a while I'll have a painful day, but they are not frequent at all, thank goodness. Whatever my doc did this last Lap seems to have worked and the Mirena is probably part of it as well. We'll see how I continue to do with it, but so far I'm a fan! :)

The Sad Tale of a Stubborn Stich Named Stan

2009-07-11T15:13:00.000-07:00

There was once a stitch by the name of Stan. Stan was born with two missions in life: 1) Hold his assigned incision closed tightly until it had healed and 2) Once finished with his first mission, quietly and quickly dissolve and return to that great big pile of dissolvable stitches in the sky... But no, this stitch was special. You see, Stan was a particularly stubborn stitch. His goal was to be the strongest stitch out there, and do the very best job he could at keeping his assigned home (incision) safely closed up. So zealous was Stan about his first duty, that he began forgetting about (or ignoring, in my opinion) his second duty.

One by one, Stan's stitchy buddies began saying farewell as the weeks went by and Stan's home healed and closed tightly. Yet Stan stood steadfast and immovable. Each day Stan's home would check to see if Stan was still there, and sure enough, he was. After a few weeks, something long and metallic began pulling on him every few days, but Stan did his best to hold on... and hold on he did. "Why is my home trying to pull me out?" wondered Stan. Resolved to make his home proud, he held on even tighter, and did his best to be visible and poke his home several times a day to remind it the he, Stan the Stubborn Stitch, was still there... doing his duty.

Today however, was a sad day for Stan the stitch. Countless times, that long metal instrument had failed to pluck him from his home. Today his home tried again, but with a much less formidable enemy... fingers. "Ha!" laughed Stan... "You shall never overcome me, Stan the Stubborn Stitch! I shall stand my ground forev-""Yes!" cried Stan's home as all of a sudden Stan found himself trapped between two fingers. "Finally!" the home screamed. And with that, Stan was chucked unceremoniously into a nearby trashcan.

The End :)

Conniption Fit

2009-06-26T17:00:00.000-07:00

I had myself a little breakdown yesterday... it wasn't pretty. My doctor was concerned that due to my recent surgery and all its post-op complications/infections along with lack of rest and stress from school and work, my body just isn't coping and healing well. I got some new sleeping pills and am happy to report that I actually slept through the night yesterday!

I am a happier camper today :)

Oh Mr. Sandman... where are you?!?!

2009-06-25T05:25:00.001-07:00

I have been awake since Tuesday, with the exception of about 3 hours. Last night I didn't sleep at all... not even 5 minutes. This insomnia is getting ridiculous... My little green pills have failed me and I feel like I'm about to snap. Not sure what else to do with myself for the next hour until my doctor's office opens up, that's why I'm here posting something that probably doesn't even make sense to anyone other than myself... my apologies.

That is all.

Welcome ICLW'ers!

2009-06-23T17:42:00.001-07:00

Wow, this is my first time doing this and already I'm off to a slow start since I'm just now posting this... eeek! Sorry :(

Welcome! Just a quick blurb about me, I'm Alex, I'm 28 years old and have Stage 4 Endometriosis/PCOS/Infertility. This is my blog about my pains, both physical and mental/emotional as I try to live life to its fullest in the midst of chronic pain... not to mention the inability to reproduce! Grrr....

Most recently, I've had a Laparoscopic surgery to deal with cysts/adhesions/fibroids, etc. DH and I have tried for over 3 years (unsuccessfully) to have children and right now we are on a much deserved BREAK from it all due to many reasons... mostly health related but also because we just can't afford IVF right now.

Hmm... I guess thats it! I'm at work, so I appologize for the shortness of this post... just wanted to get something out there though for all you fellow ICLW'ers! Happy posting!!! :)

Still alive!

2009-06-13T21:21:00.000-07:00

Sorry for the lack of updates, I've been pretty much sleeping/lounging around... a lot. I decided against going back to work this week, especially with that terrible rash and still being in a considerate amount of pain. I think that's the Mirena because its very crampy like pain, very different from the pain I experienced post-op last time, sans Mirena. I've also had a lot of spotting, which I also attribute to the Mirena, argh.

My rash is getting better! The combo of Prednisone and Benadryl is finally starting to kick it, although I still have itchy moments throughout the day. At least I can tolerate clothing now... another reason I decided against going to work this week- I didn't think they'd like it if I came back naked, heehee. I've been slowly forcing myself to stay in clothes longer and longer each day as Monday is the BIG day when I absolutely have to go back. :(

My insicions are healing nicely. Still a bit tender, but thats normal. My bellybutton is the stubborn one though, still hurts like the dickens! Waist bands are murder, and while I protect it with gauze, it is still quite bothersome. Today was the first day it hasn't bled after wearing clothes, so I guess thats a good thing!

Energy wise I'm starting to feel a lot better. I'm going to have a hard time giving up my numerous daily naps, but at least I can sleep in late since I don't go in until 12:30PM each day! I know I should expect to still be tired for a few weeks, so I'm not expecting too much from myself this next coming week...

That's it I guess. My 6 week postop is on July 15th, entirely too far away for me, but oh well. I'm sure time will start flying by once I start working again.

Still in the dark

2009-06-06T15:27:00.000-07:00

Warning: Picture of belly button and rash at bottom of post, just in case you don't want to see... careful as you scroll down!

So after a few days of using Hydrocortisone cream and seeing no results (in fact, it just kept getting worse!) I spoke to my doc and told him what was going on with my rash. He was really surprised to hear about it because not only had he not used the Dermabond, but he's also switched to a different kind of antiseptic wash that is supposed to be a bit more hypoallergenic, just in case it was that causing the rash. So we still have no idea what is causing this!!! The rash has spread up to my chest, down my thighs, and around my sides towards my back now! I've been walking around/laying practically in the buff for 2 days because I cannot handle anything even touching me, its awful!!! I'm starting a medrol pack (steroids) tonight though and a different kind of topical cream along with it.

On the other front, I'm still taking the Nystatin for the thrush and started Diflucan yesterday for my vag yeast infection. Can we just say uncomfortable?!?! I am just so frustrated... I really did think this Lap would be so much easier and faster recovery-wise than my last. I was 1/2 wat contemplating returning to work this week but now I'm not so sure... At least I don't seem to be having any problems with the Mirena (as of yet, knock on wood) other than some slight cramping but nothing major. I'm still soooooooooooo tired though, but last night was the first night I slept more than 2-3 hours! (Pretty sure it was due to the Phenegran I took right before bedtime) so that made me happy. I guess I'll just have to take it a day at a time and see how it goes.

Blah blah blah blah
blah blah blah
blah blah
blah

(Hopefully that took enough space to keep the picture out of the first screen!)

Here is a picture of my rash for those that want to see: at least my incisions look better this time around, so we're pretty sure not using the dermabond was a good idea anyway, even if it wasn't the ONLY cause of the rash.

Are you kidding me??!

2009-06-05T04:45:00.000-07:00

I seriously thought that this Lap would be completely different from my first one, in the sense that we were better prepared and knew how to avoid those bumps in the recovery road that plagued me 2 years ago. Apparently though, my body had a plan to prove us wrong...

1) Last time I got oral thrush a few days post-op. This time I got it again... so I'm back on the Nystatin for that, hooray. My biggest qualm with this is the fact that by now I should be enjoying yummy solid meals but instead I'm still stuck drinking soups and eating pudding/jello because it hurts SO bad to chew and swallow!!! ARGH!!

2) I've also got another yeast infection (vaginal) like last time...*sigh*

and the best one yet:

3) Remember how I had that rash from the Dermabond and we discussed other forms of wound closure to avoid that? Well, he used stitches instead (so no adhesive at all) but guess what showed up last night? THE RASH!!! Last time it started small and spread from my inscisions out, this time it just appreared all over in the span of a day! I was itchy one minute (no rash) and then by nightfall yesterday, there it was... everywhere! I'ts been driving me bonkers and I spent most of last night with a cold washcloth, alternating places on my belly. I'v already started the hydrocortisone cream, but I know thats not going to work b/c it didn't do anything last time either. What am I allergic to?!?! My new theory is Iodine. They went to town on me with that stuff (much more than last time) and I'd been itching a little for days. It's super sticky though, so I've been working on gently scrubbing it off in the shower daily(ouchie!!!) but I guess that wasn't fast/good enough because here I am all itchy and blistery again...

I am anxiously awaiting 9am so that I can call my doc and let him know our plan was debunked... *sigh*

Lovely

2009-06-03T16:21:00.000-07:00

I'm still just a wee bit too drugged up right now to write a very coherent post, so I'll just have you all go here for today's update. I'm so silly, I know... but it was fun.

Gas pains = no sleepy :(

2009-06-02T02:34:00.000-07:00

So here I am, awake and hurting at 4:30am. Just like last time, I cannot lay down because the gas pains are excruciating in that position. Sleeping sitting up is just not very comfortable, and this is my 5th time waking up due to this dilemma. Grrr...
I figured I might as well do something to distract myself and maybe sleep will come... eventually! So here's my Lap experience:

Bowel prep- So glad that's over! Not fun, but then again could I have expected anything more? lol

We arrived at the hospital at 5AM sharp. They got me all prep-ed and then the torture began... waiting... waiting... and waiting some more. About 1 1/2 hours later my Anesthesiologist came in to talk with us and promised me a sedative b/c I was pretty anxious at that point. Then my doc came in and we chitchatted for another little while. Then my nurse arrived with that blessed little syringe full of the good stuff. I kissed Ben, they doped me up and off we went. I saw a little too much of the OR this time, which freaked me out, but then they put on my gas mask and bam, I was out!

I woke up to a nurse putting my abdominal binder on (aaaaaaaaahhhhhhhhh, LOVE that thing!)asking me if I was in pain. YES! She gave me something, brought more warm blankies and then off we went to phase 2 recovery. I had to transfer myself to a recliner (ouch!) and after my vitals were taken, Ben was allowed to come in. Forty-five minutes later I was just one big mess of tears... sooooooo much pain! They had already given me 2 Percocets and an 800mg Ibuprofen, but to no avail. My chest was hurting so bad and the crying wasn't helping so my doc ordered I'd be given some Morphine. Oddly enough that just barely took the edge off. I was still shaking and bawling and the nurse felt awful because I wasn't getting any relief/ Paged my doc again and this time they gave me 1/2 a dose of Demerol. THAT did the trick! Once the pain was under control, they got me some apple juice and saltine crackers, yuuuuum! It felt really good to eat and sip, that totally helped! Right before they discharged me (early afternoon) they gave me the other 1/2 dose of Demerol for the ride home. We received instructions on how to care for and remove my catheter at home, Ben was given all my post-op in instructions and Rx's and that was it! I don't really remember much about the ride home due to the Demerol, but at least it wasn't super painful, right? :)

So this is what they found: Endo was back (duh) though not nearly as bad as last time in 2007. Lots of adhesions and endometriomas. My right ovary (the one that gives me the most grief) was stuck to my abdominal wall, so he freed that and wrapped it in that filmy stuff. I had a fibroid on the outside of my uterus removed, as well as a polyp on the inside. He cleared out my tubes, did a D&C and then inserted the Mirena. The surgery itself took about 1 1/2 hours, so not too bad. I got some pictures to take home with me, thats always fun!

The pain has been manageable with the Percocet and Ibuprofen, though I take them right on time b/c if I wait too long that pain gets insane and then I'm stuck writhing around for 45 minutes while the pills kick in. This time I have 3 incisions instead of 4. Doc said the incisions are closed with sutures but I have yet to see them since they put big bandages over them. I can take them off in the shower today if I want and then replace them with fresh/clean/dry ones. The catheter comes out today was well which should also improve my comfort level.

I go back in 6 weeks for my post-op and to check the Mirena. This time around seems to be a bit easier than last, so I'm hoping the recovery will go smoother. Ben is taking excellent care of me, I'm so blessed to have such a wonderful hubby!

Ok, pain is creeping back up... I better go and get some rest. More updates to come!

It's over, phew!

2009-06-01T13:52:00.000-07:00

I survived! I'm home now. Lots of pain.. lots and lots of pain. Thank goodness for morphine and demerol, I thought I was going to die when I woke up. More details to come when I'm feeling a little better. Thanks for the prayers and well wishes!

WOOHOO!!!

2009-05-31T10:08:00.000-07:00

FEVER IS G-O-N-E!!!! Woooooooooooohooooooooooooooooooo!!! :) Thanks everyone for all the support! Boy am I relieved!!! Surgery here I come!!! (Now onto the yucky bowel prep... *sigh* heehee) I'll have Ben come on here tomorrow and update if I'm not feeling up to it. Thanks again!!! :)

Still burning

2009-05-30T07:03:00.000-07:00

Woke up feeling not so great again... still have a fever. Called in sick again as a last ditch effort to hopefully help my body heal by tomorrow. I'm starting to get really worried now... Thanks for the thoughts and prayers, I'll keep updating. Now I'm off to the couch and my gatorade.

Early bowel prep from H*LL!

2009-05-29T11:36:00.000-07:00

Last night I went to bed feeling cruddy. My head was killing me and I just felt "icky" (yes, I know, such a medically accurate term!) so I took some 8-hour Tylenols and went to bed. I woke up at 5AM shivering and feeling even worse. I had a fever and nausea/diarrhea as well... great. When my pre-op nurse called this morning to get everything rolling I told her about this and she told me I needed to contact my doc ASAP because this might cause my surgery to be canceled. WHAT?!?! I guess I should have known, but I wasn't thinking too far ahead at that point. So I called and left a message with his nurse and he called me back after a while to find out more about what was going on.

He suspects its just a viral stomach bug but said that we'll have to monitor how I'm feeling over the weekend before we can safely proceed with the Lap. I am to keep taking my temps and if I have even a smidge of a fever still on Sunday, the surgery is off. Noooooooooooooooooo!!! :( My instructions for now are to stay home, rest/sleep as much as I can, and stay well hydrated. On the upside, he said this will make my bowel prep on Sunday easier since there won't hardly be anything left in me to clean out... hooray... :/

So yeah... nothing left to do but watch and wait. I'm stocked up on Sprite and Gatorade and will spend the rest of the day on the couch watching movies/sleeping I suppose. My head is finally starting to feel a little better, thank goodness and my fever seems to be coming down a smidge as I no longer feel like my eyeballs are boiling in their sockets. I hope and pray this blows over by Sunday because I will be crushed if I can't get this Lap over with on Monday... these past 6 weeks have been hell and the only thing that kept me going was my countdown to this day... *sigh*

HURRY UP!

2009-05-22T17:52:00.000-07:00

June 1st cannot come quick enough... I have been sick as a dog this past week. The pain and nausea is just getting rifreakindiculous! Add migraines to the mix today and I think I've probably seen more of the toilet's insides this week then ever before. Zofran isn't cutting it 100% of the time anymore... what?!?! That was like my miracle drug when I had to give up on Phenegran. NOT cool.

*sigh* 10 more days to go...

Why I love my doctor

2009-05-13T10:23:00.000-07:00

He's just the greatest! I went in today for my annual/pre-op and as those are usually pretty painful for us Endo sistas, I was really apprehensive... He worked his super quick magic and it was done before I could even get all worked up and ready for the pain! That man is a genius, seriously. My hero.

So I got all the pre-op questions out and we came to a nice little agreement: 1) No surgical glue!!! After my rash last time, NO WAY. Phew! 2) He'll leave the catheter in for me this time (yes, per my request) since I had such a horrible experience last time with not being able to pee for HOURS and it hurt soooooooo bad! He may even let me come home with it and just teach me how to take it out myself so that I don't end up having to go back in to get one placed if I had problems at home. 3) He's going to work his magic with the hospital red-tape and code my Mirena insertion a different way so that they let him place it during the surgery. (It's a Catholic hospital and they don't allow birth control) Thankfully, Mirena is used for stuff other than BC (like bleeding and pain) so he thinks there should be no problem.

I got my scripts for the cytotec (to dialate my cervix since he'll be doing a hysteroscope, HSG, and D&C) and my little behind-the-ear-nausea patch that I loved so much last time! So yup, I'm all set! June 1st is the big day, so less than a month to go. I'd been dreading today, but I'm all sorts of optomistic right now, after that visit. My nurses were just great and so very comforting. If I ever move away from here, I'm gonna have to pack him and his staff all up in a suitcase and take them with me! :)

T minus 40...

2009-04-22T16:30:00.001-07:00

...Days that is. My Lap has been scheduled for June 1st @ 7AM. Not so much looking forward to it, especially since I've been in the ER twice in the past 2 weeks (for completely non Endo related incidents) and I'm sick of the hospital. Oh wells... c'est la vie!

Lap#2, here I come :(

2009-04-09T16:30:00.001-07:00

Here I am 4 days into my mega-pain incident and I just had a nice little conversation with my doc. Looks like Lap#2 is in the cards for me. The pain has been increasing for the past 2 months, what with the "sitting-on-a-knife" feeling, then my bladder problems, horrible super clotty/excrutiating AF's and now this stupid ovary... *sigh* Is it psycho of me to actually be relieved that this surgery is coming? I'm just so at a loss as to what else to do. I can't take the pain meds that work b/c they knock me out but I can't function without them either because the pain is so great it makes me throw up throughout the day... It's not good when you look upon surgery as a joyful event, but what can I say... what else is there to do?!?!
I've been in such a bad state the past few days that I seriously started considering getting rid of that ovary... Thank goodness my doctor was able to talk some sense into me and remind me of our hopes and dreams of children some day. He's gonna check it out and do as much repair work as possible (with that wrap stuff that prevents further adhesion build up) and drill the cysts out, etc. but is very weary of just cutting it out. We're gonna talk more about that at my appt in a few weeks for my pre-op etc. I have to get with my boss tomorrow to solidify a date but right now we're thinking end of May/beg of June.
He's calling me in some Zofran, Tramadol, and more Ibuprofen 800mg. I'm gonna keep up with my Yoga, relaxation breathing, and health(ier) eating in hopes to make it through these next few weeks as sane as possible.
Have I mentioned how much I HATE Endo?!?!? :(

Nothing like a trip to the ER to start off your week!

2009-04-06T13:28:00.000-07:00

I woke up this morning with some of the worst pain (in my right side, of course) I've had in a long long time. I also had the pukes because the pain was so intense. I eventually called in sick and called my doctor's office. He was in surgery so I spoke to my nurse, who called him, and then called me back with the news: "Go to the ER and have them do an ultrasound right away!" They wanted to make sure my ovary wasn't about to explode (haha) or twisting on itself.
I'm so glad my doc took my appendix out with my Lap because as soon as I said "lower right quadrant pain and nausea" the nurses and doctors started going into appendicitis mode, talking about abdominal CT's and white blood cell counts. Once they were satisfied that I wasn't about to die of appendicitis, we got me prepped for an u/s and they put in a line for blood and meds. I'd already taken Percocet and Phenegran at home for the pain and nausea but was still doubled over, so they gave me some Toradol. The u/s tech asked me if we were doing IVF this cycle, which was confusing to me in my drugged up state, so I said, "no" and left it at that. Later on the doctor came in to discuss the results of what they had found, and that question finally made sense. Apparently my ovaries (particularly my right, go figure) were covered in so many cysts that it looked like I was being stimmed for IVF. I thought that was hillarious, since I'm on BC pills to keep the cysts to a minimum, but I guess that's not working, huh?
Fortunately, no blood in the belly and good bloodflow to both ovaries, so no signs of torsion there. They paged and talked to my doc to give him the results and I have a follow-up scheduled in a few weeks. They gave me more meds, tried to convince me of the benefits of a hysterectomy, and sent me on my merry way. I came home and slept for a few hours, courtesy of all the pain meds they'd given me and now I'm up again feeling slightly better but very miffed. I can't believe they were seriously trying to talk me into "taking it all out!" I'm only 28 years old, and haven't been able to have children yet! Seriously?!?!?!
I'm glad my doctor isn't cut-happy, like those doctors. We've talked about a hysterectomy before, but only as a last-ditch effort, and definitely NOT anytime soon. He's very hopeful that we'll be able to get pregnant at least once, even if it does take IVF. He's just not a fan of doing something that radical in someone as young as myself, unless it is of absolute necessity and there are no other options. I'm sure we'll talk about it some more in a few weeks, but I'm glad he's got such a conservative attitude when it comes to cutting stuff out. To be completely honest though, I wouldn't mind parting with my right ovary... this little stinker has caused me more pain and trouble to last me 3 lifetimes... *sigh* Well, pain-meds are calling... I'm starting to ache pretty bad again. :(

Rethinking this Mirena thing....

2009-03-25T16:49:00.000-07:00

Since my last post the pain has continued to increase in frequency as well as intensity and duration. My migraines are still being held at bay (thank goodness for that at least!) but man, the pain is killing me. This is all starting to feel uncomfortably too familiar. It hasn't been 2 years since my lap and here I am again feeling very much like I was months before I had it. I feel myself slipping with regards to energy and how much I have to give to my everyday responsibilities... With work, school, hubby, and church callings I'm beginning to feel much like Bilbo Baggins, "like not enough butter spread over too much bread."

The plan was to get the Mirena next month, but I wonder now if that will even be worth it when my pain (especially with regards to my bladder and bowel movements) has increased this much in just a span of a month and 1/2. I know the Mirena helps with not letting the Endo progress as well as with the bleeding, but will it even touch my other symptoms? Why put myself through a painful insertion and 6 months of crazy bleeding when it may not even help? Does that make sense or am I just panicking?

I think I need to have a good talk with my doc and explore other options. I know this sounds insane, but I want to have another Lap. I figure if we go in and do some more work on those adhesions and endometriomas, perhaps I can have the Mirena placed during the surgery and we can start from a better place... I'm not sure if this is possible or if my doc will even go for it, but I don't really know what else to do/try/think.

On another note, I've taken up yoga and am working on cutting out wheat from my diet. I've increased my flaxseed intake and am thinking of adding fish to my diet. (I was allergic to it most of my childhood and just never learned to like it.) I know this won't make all the pain go away, but at least its a start, right?... I hope?

Tonight is going to be another Lortab night... *sigh*

Whoops, I sat on a knife!

2009-03-10T15:51:00.000-07:00

Or not...more like my Endo giving my intestines a really hard time this week... *sigh* Ever since I started on this new "mini-pill" my head has felt a whole lot better (hooray for no daily migraines!) but a lot of my "old friends" (as I cynically call them) have resurfaced. Before I had my Lap I suffered from a lot of intestinal pains that I had a hard time convincing doctors of. The best way to explain the pain would be to compare it to what sitting on a knife might feel like. Sharp stabbing pain whenever I'd sit down too quickly, and especially during BM's. Horrible, tearing/pulling type pain. After my Lap I was told that my intestines (both small and large) were just covered in Endo and it was the primary location of most of my adhesions. Lovely! Finally an explanation for all that pain! Turns out it wasn't IBS and/or my imagination after all! Grrrr....

After my Lap those pains disappeared for a considerable amount of time. Recently they've started resurfacing, but this week has been just ridiculous! I've been in constant pain for about 5 days now. Ben says, "Have you gone to the bathroom today?" I just roll my eyes as I know I'm not dealing with constipation here... if I were to eat any more fiber I think I'd explode. :)

So this is exactly what I'd feared it would be... a simple trade off of pain. I can either deal with the migraines (which we've established isn't very safe for me at this point) or deal with the Endo pain because my meds aren't really suppressing it worth 2 beans! Along with my intestinal pains I've also been reacquainting myself with my other "old friends"- bladder pain and that randomly wandering side pain. Oh the joys... I've missed them so much! NOT...

This past AF was atrocious and I'm dreading my next one. My only consolation is the hope that when I get the Mirena inserted in May/June things just *might* start looking up. I've also been seriously contemplating doing that drastic diet overhaul that's supposed to be really effective at relieving Endo symptoms. I've been resisting that because giving up wheat, sugars, dairy, and red meat leave me with little to no palatable choices, as I am NOT a very big veggie eater. I may have to take it one food group at a time, but I'm reaching the point where I'm just about ready to do/try anything.

Anyone have some good recipes? :)

Take 3

2009-02-21T14:12:00.000-08:00

So the migraines just haven't let up... They were the worst while I was on the Femcon, but after a month and 1/2 on Aygestin, I was still having problems with them. I called my doc and told him I was still having them about 2-3 times a week and he had me stop taking the Aygestin immediately. I am now on a progestin only (but very low dose) type of BC pill called "Jolivette." I did some reasearch and found that it's commonly used for Endo patients, so I guess we'll just see. I've been on it since Tuesday and while I haven't had any migraines (yet) I'm super bummed because... I'm bleeding again. *sigh* I really, really, REALLY loved that there was absolutely NO bleeding on the Aygestin. Other than the migraines, I was feeling absolutely GREAT; no cramps, no pains, nothing!!! If it weren't for those darn migraines, I could have been content to stay on those pills for the rest of my life just to keep the pain and bleeding away. Stupid migraines... grrr...

I guess I've reached the point where I have to pick and chose which pain I can (safely) live with better. After 4 months of non-stop migraines and visual distrubances, I think I'll deal with the bleeding and Endo pain for a while. In a few months I'll be trying the Mirena and hopefully that will work wonderfully and I won't have to pick and chose anymore. Until then, it's back to Endo as usual. :/

She's aliiiiiiiiiiiiiiive!!!!

2009-01-13T18:43:00.000-08:00

Yep. That would be me... So sorry for worrying you Jeanne, I've been a bad blogger. Very, very bad. I haven't really even been keeping up with my email either (which doesn't help when people are trying to figure out why you've fallen off the face of the planet... again, sorry Jeanne!)

So, after we decided to quit TTC and I got put back on BCP's (which ugh, so NOT a good thing, but more on that later) I kind of went into a funk. After 3 years of doing nothing but obsessing over getting pregnant, I had a really hard time adjusting to doing nothing. As my last few posts reflect, I still wasn't feeling all that hot (constant nausea and pain) and emotionally I was just not holding it together very well. How did I deal? Well, I didn't... I just chose to try to ignore things... ignore the Endo, ignore how I felt, ignore pretty much everything and anything that had even the remotest connection to all this crap. Unfortunately, that meant ignoring this blog... again, I'm sorry.

I think I'm ready to come back now.

What have I been up to lately? Well, pretty much working my bum off. I'm starting a new job here in a few weeks and am currently training my replacement and trying to tie up all loose ends before making the switch. I'm going back to school this fall to finish up my RN, so I'm really excited about that too! We're planning on paying down our debt and then saving up for adoption. Maybe some day we'll attemp IVF... maybe we won't. For right now, we're closing the TTC chapter in our lives for my own health and sanity.

On the Endo front, BCP hasn't been all that fun. The pain has gone away for the most part, so that's great BUT everything else just really bites! I'd been bleeding pretty much non-stop since I started it about 2 months ago. I also started getting migraines more and more frequently and the severity was just out of control. They would last for days at a time, my worst lasted about 5 days... insane, I wanted to die! It brought the nausea back and I was back on Phenegran.

It finally occured to me that maybe it was the BCP's (duh!) so I called my doctor and as soon as he heard what had been happening, he told me to STOP taking them right away and put me back on Aygestin. This was about 1 week ago and so far that was hands down the best decision ever! The bleeding stopped pretty much over night (YAY!!!) and the migraines have been slowly getting better. I was told Aygestin can cause headaches, but we're hoping it will at least not be as severe as what I'd been experiencing before. I'm starting to feel a lot better, so I'm hoping this will be successful. I still plan on getting the Mirena IUD in a few months, so we'll see.

Hope you are all having a great (and pain free!) day! :)

Saltine crackers

2008-11-20T17:59:00.000-08:00

They are my new best friend... OH MY GOSH I am so tired of being on the verge of puking all day, every day. I can hardly eat anything... this is NOT cool.

For the record, I am VERY bitter about this mock-morning sickness when I've just had to stop TTC. Sometimes life is beyond cruel... :(

This just feels plain WRONG!

2008-11-18T14:36:00.000-08:00

So I started my BC pills last night... I'm on Femcon 35 (the chewable version of Ovcon 35. That's just hillarious... Chewable BC pills? Like they're too big to swallow or something?!?!) As I sat there with my new little white pill in my hand (which actually smells minty, go figure!) I was having this internal struggle in my head.

"Take the pill, Alex"

"No! This stuff makes me STOP ovulating and makes my cervical mucus HOSTILE!"

"Alex, take the stupid pill, it'll make the bleeding go away."

"No! Bleeding means I'm ovulating... Ovulating means there is still a chance!(even if its less than 2%...)"

"Do you WANT to have another Lap in a few months?"

"...no..."

"Take the pill."

"NO! I want a BABY!!!"

"GIVE IT UP, GET A GRIP, & SWALLOW THE DANG PILL ALREADY!"

......... *gulp*

*Sigh*

Then my right ovary has a particularly painful twinge and the stupid logical voice in my head says, "See? Told you so!"

My heart is heavy...

2008-11-15T10:20:00.000-08:00

Today I made a very painful and difficult decision, with the help and support of my wonderful hubby. After much thought and prayer, we've decided to call it quits on the TTC front. Not forever, but for a while... at least until we can pay off our debt and save up for IVF, which probably will be a good few years...

What brought this on? Well, a few things actually. First off, my body has been having a really hard time the past 2 months especially. I've felt my Endo slowly creeping back to very painful levels. I am now so constantly nauseaous from the pain that I've had to start taking Phenegran to help keep my food/pain meds down. The bleeding/clot-throwing has reached new and frightening levels (similar to pre-Lap) and nothing other than Percocet touches the pain. Thats NOT GOOD. I cannot function on Percocet, but I can barely make it through my days at work on Rx Naproxen & Tylenol or Rx Ibuprofen & Tylenol. I am fearful that if I let the Endo keep progressing (which it will as long as we are TTC and doing fertility meds) I will soon be back in the OR having another Lap. This is a great fear of mine, not because of the pain/Lap itself, but because Ben just had an appendectomy and spent nearly a week in the hospital. Our bills from said surgery are just barely starting to come in, and another surgery would devestate us, financially. I simply cannot put us in that situation on a whim to fulfill a dream of mine that may never come true... Not when the odds are stacked so much against us.

I talked to my wonderful doctor today, and while he was sad to hear the news, he always supports me in everything I choose to do. We had previously talked about the "what if's" regarding if Lupron didn't work and together decided that I'd try the Mirena as a long-term treatment for my Endo until we're ready for IVF. Due to insurance, I have to wait until Jaunuary (when they start covering IUD's) to have mine inserted, but for now my doctor gave me the option of going on continuous BC to provide some modicom of relief. I accepted and he's going to give me some samples on Monday so I don't have to purchase them for just a few months.

I hung up the phone and just cried for a while. Even though I know this is the right thing to do, and what my body needs at this time, it's still hard to give up. I feel weak, like a loser that just quit because I'm not strong/brave enough to face more pain. This is the hardest decision I've had to make in a long long time. Thank goodness for my patient, understanding husband... I could not do this without his support.

Despite the pain and how my heart aches right now, I know that there is still hope. In conjunction with this decision, my resolve to go back to school and finish up my degree has been solidified. I thank my Heavenly Father for opening one door for me as He closes another. I trust in His plan for me and while it may be a tough road, I know I am never alone.

Thank goodness for perspective...

2008-10-18T15:03:00.000-07:00

Well, here I am back at square one, as AF decided to show her ugly face today once more... Fortunately/Unfortunately something happened to us last week that has cushioned yet another blow by putting things into perspective for me. I almost lost my hubby last week... His appendicitis was misdiagnosed as "food poisoning" and by the time we realized it was something much more serious and rushed him to the ER, things had already taken a turn for the worst and his appendix oozed all over his insides... He spent almost a week in the hospital recovering. Thankfully everything turned out just fine and he is making an astoundingly quick recovery!

Yes, I'm bummed yet another month has gone by and still no BFP. I'm sad, but that's normal and to be expected... how else are you supposed to feel after 3 years of constant failure? However, despite the pain (emotional & physical, as the cramps are a killer this month) I am doing surprisingly well and haven't thrown my ususal "woe is me, life is so unfair, my life is over!" pity-party... why? Well, again, perspective... A LOT worse things than a BFN could have (and almost did) happened to me this month.

So up I get... yes, this sucks... I hurt and I feel like poo on a stick, BUT I have much to be gratefull for... my precious hubby! :)

Here we go again!

2008-10-04T16:40:00.001-07:00

Wednesday I went in for my follie-scan and my doctor was rather pleased... more so than me. He was estatic about my endometrial stripe which was now at a nice and plump 13mm (up from 9mm last month and 7mm the month before that) and a good sized follicle at 24.5mm. This little sucker was on my right ovary, but I was sad to see that it was all alone and had no buddy! My doc wasn't very disturbed by that, but I guess I just figure 2 is better than 1, know what I mean? My left ovary was just a mess of PCOS, looked like a cluster of grapes... below is a picture of what PCOS looks like on an ultrasound, although this particular ovary is not mine.

So yeah, that was what my left one looked like. I wonder if she'll ever work? In the past 3 years of TTC, I think it would be generous to say I've ovulated from that side more than once or twice. If I ever lose my right ovary I think I'd be totally screwed b/c little miss lefty here just sits there all cysted up and does nothing, month after month. *sigh* That's a scary thought. I'm having to increase my Metformin dose, in the hopes that this will help with the PCOS.

In any case, I'm officially back in the 2ww... we'll see what time will bring us. I'm trying to be more hopeful this month. My doctor is ever optimistic, and continues to cheer me on and pray for us. If nothing else, I'm so grateful for his care and attention... Infertility is hard enough to have to deal with a doctor that doesn't care or understand. I'm so blessed to have one that takes such good care of me!

I knew it...

2008-09-21T16:50:00.001-07:00

I had a feeling this cycle was going to be a bust, and it sure was. I'm on cd2 again and started the Femara last night. This has been a rough weekend, both emotionally as well as physically. I'd hoped my first AF post-Lupron would be an easy one, but oh no, not so. I have spent the past 2 days curled up on my couch in pain and losing ridiculously copious amounts of blood. I've been so nauseaous I can barely eat or keep anything in. NOT cool...

I'm going back to my couch now...

Can't you just CHILL Ursela?

2008-09-11T17:58:00.001-07:00

So I'm 7dpo today and have been cramping for 3 days... 5dpo is WAY too early to start cramping and this cannot bode well. I've always had this problem. I thought it was just bad luck that I'd cramp for a week and some before AF came each month. Now I know its just the Endo. A while back ago I read this on Endo-Resolved (link can be found on my sidebar) and it just saddens me that this could be happening right now... ruining my possible implantation.

Prostaglandins are required for ovulation, regression of the corpus luteum (i.e., ending the monthly menstrual cycle), sperm motility, immune interaction, contraction of the uterus at birth and menstrual cramps. Endometriosis implants and the endometrium of the uterus are the richest source of prostaglandin production in the body.

However, the problem with Endometriosis implants includes:- Prostaglandins are released into the abdomen instead of inside the womb- Prostaglandins release by the implants seem to be out of phase with their release by the uterus. Prostaglandins are produced at the wrong time sending the wrong message.

For instance, there is a normal surge in prostaglandin F production at the end of the menstrual cycle, causing the effect of the copus luteum of the ovary to die down and signaling the start of a new menstrual cycle. The implants of Endometriosis produce their own prostaglandin surge several days after that of the womb lining. This may be one of the main causes of very early miscarriage.

If a women is a few days pregnant then the Endometriosis implants producing prostaglandin F would incorrectly signal the ovary to start a new menstrual cycle, causing the womb lining with the implanted egg to be expelled - and the consequence is an early miscarriage.
Prostaglandins also play an important role in the contractions of womb and fallopian tubes. During the normal menstrual cycle, the gentle contraction of the womb and fallopian tube aids the movement of egg and sperm to the outer third of the fallopian tube where fertilization occurs. High concentrations of endometriosis implants may prevent fertilization. An excess of PGF2 and PGE2 could cause contractions that are too strong and expel the egg too quickly.

The prometrium is supposed to act as a muscle relaxer in a way for my uterus, which would help with this but... here I am 7dpo and cramping for 3 days... something makes me think it's not working so well. I know many say cramping can be a GOOD thing and a "sign" of pregnancy, but I don't think that applies to us Endo sufferers. *sigh* Oh well... I guess we'll see if I'm right in about a week... By the way, Ursela is my pet name for my evil uterus.

Success!

2008-09-05T17:05:00.000-07:00

I went in for my folliescan today and did not get to see any folicles... but never fear, this time it was a good thing! There were none there because.... I already ovulated! I got that + OPK on Wed and sure enough my temps spiked up very high today, so I went in today thinking that I probably ovulated yesterday. The ultrasound confirmed my suspicion and we were able to see my corpus luteum, what's left of a follicle that has recently burst, and what is responsible for producing progesterone to keep a pregnancy viable in the first few weeks until the placenta takes over. My endometrial stripe (or lining) was at 9.3mm which is good depth for implantation. No cysts were found (which is a huge relief!) so all around, a great visit with fantastic news!

Now begins the long 2 week wait (2ww). On Sunday (3dpo or days past ovulation) I start taking my Prometrium and continue on that for 12 days. At that point I will be 15dpo and ready to test if my temps are still high and AF has not arrived. This is the hardest part of every cycle... the never-ending wait... wish me luck!

Houston, we've got a + OPK!

2008-09-04T17:58:00.000-07:00

WOOHOO! Oh what beautiful purple lines, I love them! So this positive plus the fact that my ovaries feel like they're about the size of grapefruits leads me to believe we might be getting somewhere at last! I have my follie-scan tomorrow, so here's hoping for good news! I'll update once I know whats going on. I heart Femara! :)

Second verse, same as the first?

2008-08-29T11:55:00.000-07:00

Well, AF just never did come... A week later I got impatient, called and whined to my nurse/doctor and they told me to:
A) take a pregnancy test... Riiiiiiiiiiiiight, because I would be that lucky? NOT! Of course BFN, I never even ovulated! But ok, we had to make sure.
B) If BFN, then start Femara again, this time twice the dose, 5mg.

So here I am on my 4th day of Femara wondering if this is going to work. I have felt the same little "twinges" off and on since day 2, but nothing else. Something I realized last night was that while not as bad as with Clomid, nevertheless Femara has always given me headaches. Last month I didn't get any and it turns out it didn't work... Are those 2 factors related? I have no idea! Maybe it's just a coincidence, but my paranoid/pessimistic mind is thinking hmmm... no headaches last time, no headaches this time... will next week's folliescan show the same nothingness as last month's? Lets hope not...

Wake up sleepyheads!!!

2008-08-23T10:23:00.000-07:00

My last Lupron shot was on June 24th and on July 22nd, I started up Femara again, so see if that would help wake up my ovaries and get me ovulating again. A few days after starting the Femara, I started feeling all those familiar "twinges" that got me thinking/hoping that this would actually work! However, something odd happened. I started using OPK's (ovulation predictor kits) and not only were they negatice... they were EXTREMELY negative! By that I mean that usually negative = testline is lighter than control line. In my case, I wasn't even getting a testline period! NONE, not even the kind that you can *almost* will into appearance if you turn the test strip juuuuuuuuuust right and squint! Heehee... ;)

Failure to stimulate was confirmed on my cycle day 11 ultrasound. There was just simply NOTHING there. My ovaries were still fast asleep... I guess they're enjoying their vacation too much, lazy bums! I was instructed to keep temping (just in case) and start Prometrium on cd18, continuing through cd29. All OPK's thereafter continued to be super-negative, so yeah... this cycle was a complet bust. I took my last Prometrium Tuesday night and as of yet, still no AF. As soon as she decides to show her face I will be able to start up the Femara again, but until then... the wait is on. :/

Loopy on Lupron (Part 4)

2008-07-27T18:07:00.000-07:00

Lupron was always a drug I'd hoped and prayed to avoid on my Endo journey. I had heard/read enough bad things about it to scare me half to death and balk when my doctor mentioned it right after my Lap, seeing as my case was so much more severe than we had anticipated. I declined it and insisted on giving Femara(as a fertility drug) a shot. After 4 cycles and still not pregnant, the pain was starting to come back and then I got another humongous cyst that made my right leg go numb for a while. I realized that sadly enough my Lap had not bought me the 6-9 months we had been hoping for, and after much thought and prayer decided to turn to the "evil" that is Lupron. I appologized to my husband in advance and warned him that it might be a while before he got his loving wife back. I cried myself silly, took a deep breath and called my doctor to tell him what we had decided. He himself has gone through having his wife on Lupron and knew how hard this would be for us. He had me start taking the add-back (Aygestin) right away and on January 15th, 2008 I began my monthly Lupron Depot 3.75 mg shots.

The first month was a breeze. I was expecting the heavy bleeding that comes a few weeks into the treatment. You typically get an initial "estrogen flare-up" that makes your symptoms worse and can bring on heavy bleeding. I did not. I remember calling up my doctor after 3 weeks worried because I had not been bleeding... I thought my crazy body was malfunctioning even then. I was told to relax, I was just one of the "lucky ones" and indeed with time I slowly began to realize that I was. The hot-flashes and night sweats set in pretty quickly, within the first few weeks. Honestly it wasn't any worse than what I had experienced on Clomid, so I wasn't too troubled. My moods were a bit more volatile, but again... Clomid had done MUCH worse to me, and so I happily proceeded to shot #2. That's when things started getting a little bit harder and the insomnia set in.

Never in my life have I realized just how much sleep matters to a person. At first it started with a lot of tossing and turning throughout the night. I could fall asleep just fine but my problem was staying asleep. When I mentioned this, I was told to try Benadryl. It worked... somewhat. Again, I would fall asleep just fine and maybe it would buy me another hour of straight sleep but no more than that. By now I was onto shot #3. I was sleeping about 4-5 hours a night which was still doable, but it was starting to take its toll on me. Day after day, the exhaustion kept building and again I mentioned it to my doctor who told me to try Unisom instead. Again, this worked somewhat, but after a few weeks it made little difference. This is when the true hell began for me. I was working full time and getting up at 5am to teach an early morning scripture class for the youth at our church Monday - Friday. I would get home at about 6:30-7PM each day, eat dinner, plan my next day's class and then crash and fall asleep on the couch by about 8:30 each night. Ben would pretty much drag me up to bed where I would sleep until about 11 and then I'd be awake the rest of the night. Sometimes I would manage to half doze off, but I would never quite get to that "all the way asleep" state. Day after day I would drag myself out of bed at 5am and cry because I didn't think I could actually make it through my day. I started losing my memory... I would forget how I got to certain places, or what someone had just told me not more than 5 minutes before. I started making big mistakes at work and 1/2 the time I felt like I was going insane. One day I just had a complete meltdown. It was Sunday and I was trying to get up and get ready for church but I just couldn't. I lost it and just sobbed for hours. I was completely irrational and was convinced I was going to die if I didn't get more than 1-2 hours of sleep. My husband made me call my doctor right then and there and tell him what was going on. I must've sounded like a blubbering fool on the phone, but my doctor called me in some sleeping pills right away. I took a week break from my early morning teaching to help me catch up on my sleep and things quickly turned around. I could finally sleep again! Those little pills became my lifeline. I could NOT have made it through the rest of my shots without them.

Shots # 4 & 5 were pretty uneventful except for the fact that I started having constant spotting for those 2 months. It just came on with no explanation and just as unexpectedly stopped the very day I received my last shot! My mood was very much improved now that I was sleeping again. Those pills were a life-saver. The second 1/2 of my treatment pretty much flew by with no significant problems. I did, however, get a lot of migraines for the first 2 weeks after each shot. Each month they got a little bit worse but compared to the insomnia they were much more managable.

June 24th, 2008 I recieved my 6th and final Lupron shot. My doctor, nurse, and I were SO excited! I had survived! I'd been pain-free since my 3rd shot and so we all felt that I was in pretty good shape and decided against a second 6-month round. We planned to start me on the Femara the same day I *would* have had a 7th shot, 4 weeks later, to help my body start waking up so we could start trying to conceive as soon as possible. So here we are, on our way to trying to get pregnant again! I just took my last Femara pill last night and am due for an ultrasound this Friday to see if my ovaries are responding or if they are still slumbering away. I've started feeling some familar twinges (the kind I felt when I was on Femara before) and so my hopes are that something is happening in there.

All in all, despite the 3 months of no sleep and the migraines... I really do consider myself lucky in the sense that I survived Lupron. I am completely off my sleeping pills now and starting to get some decent rest all on my own. The first few days were rough, but its getting better. I am still pain free and am feeling pretty good all around! I do not know if this will help us conceive, and I certainly know not to expect the pain to be gone forever, but it has been a very nice break so far. I suppose only time will tell whether or not it was worth it to do the Lupron, but so far I'm happy with our decision to give it a shot. I know that Lupron is a highly disputed and controversial "treatment" and that it doesn't work for everyone. I recognize that many have been burned by it and regret dearly having tried it. For them I am very sorry and wish it had been different. I am in no way recommending Lupron, just sharing what it has done to and for me. Perhaps I will have luck with it and it will help me conceive like it did for my doctor's wife.... and perhaps not, but for now I'm glad I did it, but more glad that its finally over! It wasn't as awful as I'd heard it would be, but it was still hard enough.

Going Under (Part 3)

2008-07-20T20:03:00.000-07:00

August 31st, 2007 was hands down one of the best, yet worst days of my life. It started very early since I had to be at the hospital at 6:15 to get prepped for my surgery at 8am. Really the preperation started the day before with the horrid bowel prep and Cytotec (meant to dialate my cervix overnight). Honestly, the Cytotec was worse than the bowel prep! My doctor had me take 2 Lortabs with it, but I still woke up at 3am thinking I was dying. "Cramps" is not even the right word to describe it... seeing as this is what they give women to help them dialate and go into active labor (prior to Pitocin) I guess you could call them "contractions", only there would be no baby at the end. Oh no... no baby, but still worlds of pain that the Lortab did absolutely NOTHING for.

Overnight bag in hand, clutching my favorite Harry Potter book, and my husband and mom (who had flown down for a week and 1/2 to help, bless her heart!) we arrived early and sat for a while until I was called. Ben was allowed to go back with me, thank goodness because I was a nervous wreck. I had been told that once my IV was started they would be able to give me something to help me relax, but when I asked the nurse about it, she informed me that this would not be possible. I FREAKED. My doctor came to see me, went over the surgery plan, and tried to cheer me up some. I don't know if he sensed that I was on the verge of hysterics and maybe went to talk to the anaesthesiologist, but within 5 minutes my "new best friend" was there, drugs in hand. I did end up breaking down and crying, but that didn't last long because the anaesthesiologist kindly sent me into la-la land quickly after placing the most wonderful anti-nausea patch behind my ear that I was allowed to keep on for 2 days! I remember watching them inject something into my IV and within seconds I felt like I was floating off my gurney! Ben kissed me goodbye and off I went. I am SO grateful for whatever it was they gave me because as they were wheeling me down the hall and all those lights were passing me by overhead, I remember thinking "I should be terrified right now... hmm, thats odd... oh well." :) In the operating room I was immediately surrounded by a gazillion smiling faces! Such friendly nurses, I thought. One asked me if I was cold (maybe I was shivering?) and before I could even answer, I could feel a bunch of warm blankets being put on me, even wrapped around my head! Oh it felt so good! That same nurse stroked my arm and told me she was going to give me some oxygen (yeah right) and that I should breathe in deeply. The mask was put over my face and I prepared for the sickly sweet smell of the anaesthesia I remember from my tonsilectomy as a child, only it never came. Maybe it really was just oxygen? Or maybe they've improved the scent of anaesthesia! Who knows... in any case, I don't think I took more than 2 breaths before I was g-o-n-e.

When I woke up I was cold... and in pain. Lots and lots of pain. Immediately a nurse rushed over and asked me if I was cold... yes! Was I in pain? YES! She quickly brought me more warm blankets and shot something into my IV. I went back to sleep. This happened quite a few times, until I started feeling a bit more lucid between catnaps. It was now close to 1PM and I wanted to see my husband. I was informed that I was in Phase 1 recovery and would be able to see him shortly when they transfered me to Phase 2. A good friend of the family (who worked at the hospital) came to see me and bring news. I had asked Ben to make sure he found out what stage Endo I had when my doctor finished up with me. It was the first question I needed answered. I knew he would have told her, so I asked. I knew it before she even spoke because of the look on her face. "Stage 4, honey. I'm sorry..." I cried... and cried... and cried. It made sense, really, but I had always held onto the hope that just maybe I would be one of those women that had a mild stage of the disease and just had a lot of pain. After all, the amount of pain and the gravity of the disease are not directley proportional. But no... that was not the case, and I would soon find out just how bad my Endo was.

My stay in the hospital was pretty nice. Odd, I know, but really I wish I could have stayed longer! Every 4 hours a nice nurse would come in and shoot me up with some more painkillers, which was great because at about 3 1/2 hours later I would be in considerable amounts of pain and by the 4th hour I was on the verge of tears. Getting in and out of bed to go to the bathroom was... well, terrible. I remember everyone telling me to "use my legs" but they felt like jello, how do you get around that? My belly was HUGE and bruised and I my 4 inscisions looked nasty. They were closed with surgical glue and not even bandaged, so there they were in all their bloody, nasty, scary glory! Peeing was near impossible for that first afternoon, I almost had to be cathetered again. Once I finally was able to *tinkle* I had to do it in a measuring cup sort of thing and it was BLUE from the dye used during the Lap. (I had an HSG done as well) I freaked out and Ben had to explain why that was happening. My doped up/paranoid mind was conjuring up thoughts of kidney failure or something along the lines of that! I had my appendix removed during the Lap and so I was on a liquid diet that day, which was fine by me because I was so not hungry. But the apple juice and jello were appreciated.

The next morning my doctor came to see me now that I was more lucid and able to retain information. He brought with him tons of pictures (that I was able to keep!) and also drew me a diagram of what he found inside me. First of all, my pelvis was pretty much frozen. Everything was glued together with adhesions. My uterus was glued to my bladder, my intestines, and peritoneal wall. My intestines were also glued to my peritoneal wall. My appendix was covered in Endo and curled up/glued to my right ovary and tube. Finally, an explanation for all those trips to the ER with "appendicitis" that never turned out to be anything real! My doctor took that little sucker right out, and for that I will be eternally grateful to him! My poor ovaries were covered in countless cysts and many endometriomas. He showed me pictures of my pock-marked ovaries after they'd all been drained and shelled out. I had had a fibroid removed off my uterus and had needed a D&C to clean out the inside of my uterus to stop all the bleeding. An HSG was performed to clear out my tubes. He said it was all a huge mess. It was horrifying yet SO vindicating at the same time. All these looooooong years of being told this was just all in my head, that I just had a "low pain tolerance" finally made sense. I wasn't crazy after all, and there WAS a cause for my pain, which was VERY MUCH REAL. Like I said, it was the best and worst day at the same time for that reason. I FINALLY had my diagnosis.

Later that day I was discharged and sent home to heal. I did not want to leave. I loved my bed that made it easier to get up and down. I loved that nurses were there with more pain meds and comforting smiles. As a parting token, I was given an abdominal binder which would become my new best friend for the weeks to follow. Every time I stood up, it felt like my internal organs were falling out. It was painful and pretty scary. I had a lot of mesh put in to hold everything in place once all the adhesions were cut, so I imagine thats where the "falling out" sensation stemmed from, since my organs were now free to move around like they should in a normal pelvis. This however, was not fun and hurt quite a bit, but the abdominal binder helped a great deal in that respect.

Recovery at home was long and hard. I was very frustrated because I had heard that this was the type of surgery that you could have on a Friday (which I did) and return to work on Monday. I did not. I could barely walk around for more than 5 minutes at a time that Monday. On Friday I made my first trip out of the house and it just about killed me. I felt so weak and the pain was still very much present. I was supposed to return to work the following Monday and I had no idea how I'd be able to. Returning to work also meant going off the Percocet which I could not imagine at that point. From the outside, all you could see were (4) inch long inscisions. Why was I having such a hard time? My mom and Ben kept reminding me that the real healing was taking place inside, where the damage couldn't be seen. I had to be patient with myself and be positive. Things would get better.

I did return to work the following week but only part-time the first week. I would come home and be so exhausetd I would crash on the couch and stay there until Ben came home from work. To be completely honest, it took about 6 weeks to get back to normal. I had some post-op complications including oral thrush, infections and a crazy allergic rash to the surgical glue used to close my inscisions. Definitely not a very fun recovery period, but things soon began to improve and I felt the old me resurfacing. By the old me I don't mean pre-op Alex... that pain-riddled, always exhauseted Alex was not me. I mean the Alex that existed before pain ruled my life. An Alex that had been burried for so long. The change was amazing. I had so much more energy! I no longer had to rely on painkillers to keep me going. I believed my surgery had been the miracle I'd been hoping for ... and for a while there it was, until the pain slowly started coming back. We were back to trying to conceive at this point and using Femara as the fertility drug of choice, since it is more Endo friendly than Clomid. However, my ovaries were not a fan... perhaps they were still healing and it was too soon to push them so far. Regardless, I only made it 4 months post-op before we were once again forced to switch modes. This time Lupron was the detour, a drug I'd been hoping to avoid.

An Uphill Battle (Part 2)

2008-07-20T12:37:00.001-07:00

Before continuing with my story, I just wanted to say thank you to those that have come and visited my little blog on its very first day!It's amazing how less alone you feel when you realize how many others are out there going through the same crud. I'm am so sad that such a painful thread links us, but I'm glad that we can gain strength and comfort from one another's experiences and thoughts!

Ok, now onto the rest of my journey up until now. I think I'll divide it into seperate posts, just to keep things a bit more organized and not so lengthy. Today's post will be about our infertility struggle, by far the worst that Endo has done to me...so far.

Growing up with these "womanly issues" I always suspected having children might not be the easiest thing ever for me. I had nothing to academically back this up of course, but in my mind that part of me just didn't "function right" for some reason and so natuarally I assumed this would come back to haunt me someday. Boy was I right, and sadly enough I had grossly underestimated just how difficult it would be...

I would later (after my Lap) find out that I also have Polycystic Ovarian Syndrome (PCOS) which unbeknown to me (at the time) is often found with Endo. My cycles were never what you would consider "normal" and after being on birth control pills for 8 years straight, I expected it to take a while for my body to get it all straightened out. Eight months into trying I still had no idea what my body was doing, so as per my doctor's advice, I started Clomid. I wish I had known at the time what horrid effects this drug would have on my Endo... perhaps, I would have decided against it, but I guess thats why the say hindsight is 20/20, huh? In the 8 months that we did Clomid (along with trigger shots and 2 IUI's) my Endo symptoms grew ten-fold. I developed some nasty cysts that we had to try birth control pills on to make them go away. That didn't work so well, but at least they weren't getting any bigger right? Ha! A few ruptured, and that was hands down some of the worst pain I've ever had. Then the non-stop bleeding began, for which I was placed back on birth control pills, only this time continuously. The bleeding continued... Provera was added to the mix... still I kept bleeding. The last thing my doctor could/would try would be Aygestin, and if the bleeding continued I would have to have surgery... both to stop the bleeding and get rid of the cysts that would just not go away on their own.

Of course the bleeding continued, the pain was at an all time high and I was popping Naproxen and Lortab like candy just to be able to function. I had been asked to keep a daily journal of my pain level, and those last 2 months, there was not a day that went by in which I wasn't hurting somewhere, ususally at a moderate to severe on the pain scale. It was awful... I wasn't sure how I was going to keep going like this. The pain drained me of any and all energy. I was worse than useless! After work I would come home and just crash on the couch. On the weekends I would take my strongest painkillers (because it was the only time I could since I didn't have to go to work) and pretty much just sleep the days away. I neglected my house, my husband, and any other resposibilities I had at the time. It had been almost 2 years since we first started trying to get pregnant, and there I was, still no baby, in worlds of pain, and bleeding to death. Could things possibly get any worse?

Oh yes... they always can. I've learned not to ask that question anymore. On August 31st, 2007 I went in for my Laparoscopy. (I will blog more in detail about that next time) When I woke up I heard the news I was dreading. Yes, I indeed have Endometriosis and a rather severe case of it too. I also found out I had PCOS which at that time meant very little to me, but would soon mean more pills to take, including the not-so-fun Metformin. Eventually all this would also mean a 6 month course of Lupron, which I am just barely resurfacing from. More on Lupron later on as well. So, here I am almost 3 years since we started down this road of trying to conceive, and still no baby. Will we ever get our little miracle? Who knows... but for now we keep chugging along, and in 2 days I will start another treatment, Femara.

How It All Started (Part 1)

2008-07-19T13:57:00.001-07:00

My journey with Endometriosis began long before I ever knew what it was. Technically it began before I even got my first period, although I had no idea what was happening at the time. I was a young pre-teen who was just always in a lot of pain and frequently took trips to the ER because of appendicitis scares that never turned out to be anything but just that... a "scare."

My mother would often tell me about how much pain she endured every month, especially when young... as did her mom, and probably her mom's mom too. It "ran in the family" and so was surely nothing to worry about. After all, isn't pain just a "normal" part of every woman's life once they start menstruating? This rationale, along with my pediatrician's assurance that I was perfectly fine, lulled me (as well as my parents) into acceptance. The pain just became a part of my life, of who I was, and we just dealt with it as best we could. As I grew older, the pain grew worse. Eventually it became bad enough that I would miss school on occasion because of it. My legs would go numb from the pain, and my mother would sit with me and rub them for hours.

By the time I was 16 it was bad enough that my mom took me kicking and screaming to my first OB/GYN. After taking my history and asking a few questions (not even as much as an exam was done!) the doctor quickly wrote me an Rx for birth control pills and told me that this would fix everything. These problems were "common" in teens and that eventually my body would adjust, but that probably I just had a "low pain tolerance" and would need to be on the pill forever to keep me content. I took the pills and hoped for the best. After all, she was a doctor... she MUST know what she's doing.. .right?

Fast forward a few years. Now a college student, I was off on my own trying to cope as best I could without the aid of my mom during those rough days each month. The pills didn't seem to be doing much for me anymore, the pain was getting worse. I went to new doctors... they all said the same thing. "Oh you just have a low pain tolerance, maybe we'll try a higher dose... and here, why don't you just take these pain killers!" More pills to pop, great. So the hormones got stronger and my tolerance began to wane. Not only was I still in pain but now I constantly felt sick to my stomach, my moods were all over the place, and each month certainly did not get any easier. Finally, when I was about 22 I found a doctor (while I was living in California for a short while) who mentioned Endometriosis to me. I had never heard of it, but everything she described was dead on to what I had been struggling with for years. I took that information and ran with it, doing as much research as I could.

I moved back home again shortly thereafter and went to a new doctor. I mentioned my previous doctor's tentative diagnosis and this new doctor all but laughed in my face. She said I was "too young" to have something that serious. "This is a disease of the 30-40 somethings, there is no way you could have that" she kept saying. Upon my insitance, she reluctantly agreed to give me a referral to have an ultrasound done to check things out. Nevermind that Endo cannot be diagnosed that way, but what did I know? (And apparently she didn't know very much either!) Of course the ultrasound showed nothing amis, and triumphantly she talked us out of having the Laparoscopic surgery that would be the only way to really know for sure.

Not much later I got married and moved again. Once again, I went to new doctors, all of which told me the same things and stuck me on yet higher dosages of birth control pills. This went on for years until I finally found the one doctor who listened to me. At the age of 26, I was FINALLY diagnosed with Endometriosis, after a Lap. I sadly fall into the all too common group of women that on average go 10 years or more undiagnosed due to the ignorance and unwillingness of doctors to listen and take their patients seriously. Most unfortunate still is the fact that pain was not the only battle-wound left behind from my untreated Endo... we would soon find out that it was the cause of something far worse than any physical pain... infertility.