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!





Showing posts with label endometrioma. Show all posts
Showing posts with label endometrioma. Show all posts

Thursday, July 16, 2009

Baseline-check

Baseline apt seemed to go well. I didn't get a call, so, all is good to go tomorrow for the start of GonalF and the reduced dose of Lupron. From the ultrasound, I didn't see ANY mass on my right ovary! Hmmmm. They didn't say anything about it either. Woot! It was a good bit bigger than the other though. I don't know what the reason for that is. But, I'm wondering if this ovary will be productive!!! Looking forward to next week's first ultrasound on Weds (only bw on Mon) to see!

Short and sweet post from the blackberry. Getting ready for the week ahead and the multiple injections. I'm ready for the transfer already! ;)

Sunday, June 21, 2009

ICLW time again!

Welcome ICLWers! Just a quick snippet of my blog:

I'm 29 and I have stage IV endometriosis.

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

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

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

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

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

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

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

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

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

Tuesday, June 16, 2009

Good news! (?)

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

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

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

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

Sunday, June 14, 2009

Blogging in bed

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

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

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

Saturday, June 13, 2009

The "Plan"

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

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


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

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

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

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

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

Wednesday, June 10, 2009

Update with RE

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

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

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

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

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

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

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

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

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

Friday, May 1, 2009

Damn endometrioma-we'll show you! (I hope!!!)

The nurse called me back today after I called (I love that they are so prompt!). She said they'll be watching it like a hawk. I dunno what they'll do if it's getting too big or in the way, I guess we'll cross that bridge when we get there. Best not to fill my head anyway with too many scenarios! She said it wasn't producing any hormones (AMAZING they can know that from blood, right?!?!?); which is good because that could interfere. (Anyone with scientific knowledge on that one?!)

When I get to the egg retrieval (I'm wondering IF) around the 11th, she said that they could drain it some while I'm under. That won't make it go away, but, it can relieve some of any symptoms I have from it? Eventually it'll need to be removed if I don't get pregnant and it's getting too big. Again, trying not to think that far ahead. I want the ovary OUT if I have to have another surgery again-the whole thing. They've excised my endometrioma's twice now...and, now I have a third. She wanted to keep it there for fertility purposes, two is better than one, but, obviously that's been negated at this point. Right?!?! The nurse said most likely it isn't producing any or very few follicles since the mass is attached to it.

I'm a little nervous, but, I guess that is why I'm paying them the mad $$$; for their expertise! I guess all of this illicit that kind of nervousness anyway. I'm trying my hardest to go with the flow. Sometimes that is pretty difficult for me. it just seems like even more pressure now to get pregnant. But, I need to put that thought aside. It's not up to me! I am pretty sure it's really outta my hands.

I've been a bloated mess today. Like, seriously bloated-unbutton your pants bloated. This is before stims. I am not sure what that was about. My abdomen is pretty tender. Just coming down on the bleeding; this is how I used to feel towards the end of my period. So, nothing really out of the norm for around then I suppose.

We'll see how it goes. I started my gonalF tonight; I used both thighs for my two injections. Lu.pron went down to 5 units. Monday is bloodwork, possibly an ultrasound. Ultrasound for sure on Weds. They'll let me know Monday about the menopur dosage and when to start. No turning back now...