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!

Saturday, January 31, 2009

Consult recap yesterday

I had my appointment yesterday with my RE. I had another ultrasound and then we went into her office and discussed everything. She went over the ultrasounds, really nothing we hadn't known or seen about (although, I still have a feeling there is something else there they want to check out-perhaps another mass). She was very thorough in going over things, and, it was nice to have someone sit down and explain so much.

Recap: My ovaries are kissing, and, appear to be glued to my uterus as well. The endometrioma does appear to be growing right off my right ovary. My endometruim was thicker today, and, she was very pleased about that. Actually, we went ahead with the ovidrel just to see what happens this cycle. I had at least 2 follicles on my left, not sure about the right (still couldn't see it). So, nothing is set in stone yet, perhaps a beautiful little embryo is traveling with ease down my tubes and into my uterus as we speak ;) But, she did say realistically it probably would not be an optimal cycle.

Looks like I am going to go on BC after my period and I'll have the surgery in March. Initially she said after my period...so, my period is in like 2 weeks...she wanted surgery somewhere between 2-4 weeks. 2 weeks is 2/13. I figure they only do laparoscopies on Weds or Thursdays, so, that would push me into the next week, around the 19th (assuming this was convenient for both Dr.'s). Well, I have a work trip on Feb 25th so that wouldn't work and then Baltimore the next week. So, that pushes me into March. I hate waiting! We'll see. I'm not wanting to postpone it any long than that, so, if Feb is the only time they are both free, then, I may just have to have it done then.

Then, we've got to figure out the whole IVF thing. Whether we are going to go straight into that (as she suggests), or, wait a while. That will all depend on our insurance. While we wait, I'll be on BC until we are ready to go (she talked about Lupron again, I nayed that right away). I've got to call the financial counselor at the clinic and talk to her and see what's covered, what's not. 20% of this surgery is going to be pricey...I remembered paying a lot out of pocket last year. So, I guess with both combined it'll be a little tricky. A little stressful too. We don't want to wait too long, but, like she said we can't be making rash financial decisions. My preference would be to start IVF in April, but, I am not sure that is feasible.

During the surgery they hope to remove the entire mass, with as little of the ovary as possible and check my tubes for their function. They also want to try to clear everything out, and there will be a GI surgeon on hand for that and to assist with adhesion's near the colon and actually separating my organs apart once they get in there. This is scheduled to be just a lap...although there's always that chance of having to have an open surgery. Again though, that's the reason for the GI. He specializes in laparoscopy procedures, and works with the clinic on endometriosis

So, I'm nervous, but, it seems like they have their sh*t together. She does this all the time and works with a lot of endo patients. I feel good knowing she'll be there 9and the GI too)! I just wished scheduling would call so we can get this on the calendar. I have PTO to worry about too. I don't want this wiping me out again. She said with the extent of the surgery, I could be out of work for a week.

Thanks everyone for the encouraging words! I'm a little nervous about the BC too-I've never really had good luck with the pills. The nuva ring was the only thing I could ever use without migraines. But, after I was thinking, could I use the nuva ring if I'm having surgery? I'm thinking no...they don't want you having sex or using tampons for so long after surgery...I doubt they'd want that in there either? Anyone on Nuva ring and know anything about that? Is there anything besides BC they can do?!

Tuesday, January 27, 2009

Update on not so jolly follie visit

So, the Dr. just called me. Not the nurse, the Dr. Good news first-my follicles respond well to the femara. Then, the real reason she called vs the RN. The lining isn't thickening well-it's only 3-4, should be 6-8. And the endometrioma has grown AGAIN. She wants to talk lap. I'm going in on Thursday for a repeat US and surgery consult. She also mentioned wanting to coordinate with a GI surgeon too, just in case. That was more than I was ready for today so we agreed to discuss again on Thursday. Now I'm waiting on a call to schedule that. Told you it wasn't jolly!

Follie visit wasn't so jolly!

So, I'm attempting this post from my new blackberry. I had my Us this Am. For those not familiar, when I say ultrasound, that usually means transvaginal. Lovely, right? Anywho-she dug around for another 15 min looking for my rt ovary, this time not to be found. There was a good sized follicle on my left ready to go. She didn't measure the mass, but, she did measure something that I believe to be a new finding, which was followed by the question "have you had a recent MRI or CT?". Great, I'm not really sure what to make of that.
They did dispense the Ovidrel-waiting on the go ahead and left wondering for the time being about what's up. Doesn't seem like a good sign to me when the fertility clinic can't image your ovary because the mass hanging on it is too big.
I'll update later when the nurse calls. Always fun time at the MD's I tell ya!

Thursday, January 22, 2009

That daym reflux!!!

Will it ever go away? What is it doing to my esophagus? Does anyone else have these symptoms with their endo or an endometrioma? I swear they have to be linked. Though, I first started having reflux when all my symptoms started...after my MD treated me with a round of antibiotics that he shouldn't have. I think it wiped me out. But, after so long...why does it still keep coming back if it's not because of my other GI related endo symptoms? Sometimes I am in just complete misery from it. Seems nothing will take it away once it "breaks through". I'm on nexium. My GI, MONTHS ago gave me a prescription for carafate, but, said it could cause constipation. Like I needed that. I may have to call them and get them to write me a new prescription. Might be worth a shot. It starts deep in my abdomen and comes up in my throat. It's just AWFUL, and, I just needed to rant tonight.

Anyone know anything else I can try? I have gaviscon to take when it breaks through...and sometimes I take an extra pepcid. There has to be relief. And, it's not even diet related...I can drink WATER and it happens.

Monday, January 19, 2009

Cycle 6 post Lupron

Today is Day 3 of my cycle. It was also my first go round at the new clinic. Can I just say how much I LOVE it?!?! They are so much more involved there-explaining EVERYTHING. It's just what I needed to feel comfortable in all this confusion! During my ultrasound, the tech was measuring everything and telling me all about it. There was a screen I could see everything on too-I liked that.

My endometrioma is there and larger than ever 5.35x4.35-growing and growing. The actual ultrasound was awful...it took the poor girl 15 minutes to find my right ovary around this mass. I am feeling SO ill tonight-I was only able to stay 1/2 day at work today. I think it's from all of the prodding.

I got the go ahead for the Femara, so, I'll start that tonight for 5 days. Then, I'll go back to the clinic next Tuesday for a follow-up ultrasound. They give the ovidrel in the clinic...which I am thankful for. I won't have to fight my insurance about mailing it and all that mess.

So, here we go again. I think after this round I want to try BC for a little while. I dunno, I can't decide. I know it'll help ease some endo issues...but it's not going to slow or do anything with the mass. So, in that respect there is no point. If this cycle isn't successful, we'll set up an appt with the Dr. to see what's next. I know she wants to keep an eye on the endometrioma, so, I'll keep going in for the ultrasounds. I'm glad she wants to keep an eye on that.

Friday, January 16, 2009

BFN and temp shift

BFN="Big Fat Negative" in the blogging world. Usually, I wouldn't be worried about it...I'd say I'll test again on Sunday. But, I've been charting and my temp shifted downward today. Temps stay elevated after ovulation, and, if you are pregnant they stay elevated. If you are starting your next cycle, they drop. Down, down, down.

So, I am out of town...6.5 hours out of town. If I officially start my period today (which, I have probably, I just don't want to go verify), I should go in tomorrow for an ultrasound and bloodwork for next cycles fertility work up. If you don't go on Day 2, definitely Day 3. I am not sure what happens post day 4 since I'm obviously not going in any clinics today. I'l have to call and let them know I've started and see what they say I guess.

Disappointed, but, ready to move forth with this cycle. I'm already ready for my period to be over (OUCH)!!!!

Thursday, January 15, 2009

Spotting (?) started this morning

So, I am feeling much less hopeful than I did yesterday. But, there is still a chance. I will still take my test tomorrow. Now I have to struggle between what is a real flow, and, spotting for the RE and next cycle's sake. I hate that!

Tuesday, January 13, 2009

Testing, 1-2-3

So, Friday is test date. Which, according to my chart, seems a wee bit early. But, the RE wants me to test on Friday, and again on Sun whether it's positive or negative. I've never been as anxious to test as I am this time. I guess maybe it's the added possibility with the Femara+HCG we used this month. Not getting my hopes up too much, but, I can't help but be a little hopeful and excited!

I've been a little crampy this week, with a few breakthrough pains from my ovaries. Other than that, things have been pretty good, I'm glad to report. Reflux...I guess I've just gotten used to that as a symptom. I've been working on my "diet" in regards to my reflux, and, I've been trying to eat slower-I think it's been helping!!!

We are going out of town this weekend. I'm taking my mom to a concert back home, and, we are going to visit with friends. It should be a good time! I'm glad we have plans...it'll help to keep my mind busy!

Tuesday, January 6, 2009

Maybe it's a blessing in disguise

Maybe it was a blessing in disguise that my (now former) RE dropped the ball and just didn't give us the warm fuzzies.

My Dr.'s apt today was WONDERFUL!!! Lots to type...I'll just post the quick and dirty facts right now. Basically (the new RE) she doesn't think I need the HSG (with my surgery results and because of my allergy-she said there wouldn't be much benefit-she already knows my tubes are damaged, and, they were open during surgery); she wants to monitor me CLOSELY because of my risk for an ectopic pregnancy (per the endo), starting if we have a positive pregnancy test this go round. If not positive, she said we can try another round of Femara...but, she really recommends IVF, especially with my endo and damaged tubes. IF I have a positive pregnancy test, they will monitor my blood levels-if they start going (up or down, I can't remember) it's either a miscarriage or ectopic, and at that point they would give me something to get it out of my tubes and out. :( That is kinda yucky...but, I guess if it is either going to miscarry anyway, or, cause me to have an emergency surgery, resulting in it's demise as well...then, it's okay? Ick. She said if I were to have to have an emergency surgery because of a ruptured tube, it's not going to be an easy surgery, and more than likely a laparotomy (full incision). So, she obviously doesn't want to go there.
She was so much more informative and not high strung-and laid out EVERYTHING. She even went over IVF. If we decide not to start IVF next cycle, then we'll start in April (they stop in March to clean the lab machines, tune everything up, QA stuff) with a implantation in May. If we decide to wait longer, I'll take BC during that time to try some damage control. Sooooo, yeah. There's the short gist. LOTS of information. AND, she talked about stress and anxiety too...wants me to go talk with someone and maybe start acupuncture!!! I really appreciated her covering the whole picture. It was refreshing!

Tonight I am feeling AWFUL! My stomach all of a sudden starting not feeling well, and now I am tender to the touch. I am hoping this does have anything to do with the ovidrel I took a few days ago. I need to make sure I don't start swelling, gain wait, or have any extreme pain. I have't been tender and icky like this in a while!!! I'm going to lay down and hope the pain and the bloating all go away!

Saturday, January 3, 2009

Updates and New Years Ponderings

I had another US on Friday-my endometrioma has grown another few cm...now at 4x4. I had 2 mature follicles and went ahead with the ovidrel last night. I hope and pray if I do get pregnant that it all ends up where it's supposed to in my uterus. I'm still a little nervous about going through the process without the HSG, but, I dunno...I dunno! I have two friends that went through Clomid without HSG's as a first line infertility treatment, and all was good. I'm just really hoping it'll all be okay. Maybe a stupid move on my part, but, we'll see.

I've got an apt on Tuesday with ANOTHER RE clinic; my husband and I are really tired of the quality of service we are receiving where we are now. I'm not burning any bridges just in case this other Dr. doesn't give us the warm fuzzies either, but, we need to look at our options. It all started with the lack of detail we were given about this treatment (we were left thinking I was just going to take a pill and have TI) to this HSG thing. My Dr. was back in the clinic on Weds of this week...no one EVER called me to apologize for the f* up or plan something new....give me reasons...nothing! When I spoke to the nurse on Friday, she said some more inappropriate things (someone needs to tell her what is professional to say, and what isn't). After that conversation I called the nurse line and said I'd like a call back, from the Dr. himself. Or, that I needed an apt set up to come and speak with him. The clinical manager did call me back, but, after 5:30 and I missed her call. She said she'd call me first thing Monday AM-good, I'll be ready to have a very detailed conversation with her.

So, here starts our weekend and TI (yesterday, today and Sunday); then a 2 WW. My test date is 1/16 or 1/17/2009. Maybe we'll get successfully pregnant (where it needs to be, etc) and won't have to worry about any new RE's, HSG's, and all the rest of this mess!!!

Meanwhile, I constantly have this 4x4 endometrioma on my mind. It's grown almost 2 cm in a MONTH. It's definitely not a slow process, and, I just know if we aren't successful soon, too, I'll be back in the OR. Dang endometriosis!!!!! I've noticed lately that nearing ovulation, there is a lot of pressure in my abdomen and when I have to use the restroom (urinate or other), there is a pang of pain that I have to work through in order to use my muscles to go. Diaphragm has been acting up too (same time EVERY cycle-starts around day 9 through ovulation!).

As this new year begins, I am really very thankful for so much in my life. I'm thankful for this disease not completely running my life. Although it's on my mind constantly, I definitely don't have all bad days, and I'm VERY thankful for that. I am thankful for caring friends and family, especially for my husband. I am really not sure how he puts up with me sometimes. I pray that I will always try to keep a positive attitude, no matter where my life takes me and will keep my heart open to the options that are out there for us as we continue to journey towards parenthood.

I hope this new year is full of life, love, happiness and (good) HEALTH for us all!!!

Thursday, January 1, 2009