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?!


Amanda said...

Wow that's a lot of things to be dealing with - but I'm glad they are planning on keeping it to a laparoscopic procedure if they can! I think the waiting part can be the worst - I was lucky this time round and was told the date of my next lap whilst at my appointment and the printed confirmation arrived in the post the next day - I've never known such service! I hope you find out your dates soon.

As for BC - I still haven't decided how I feel about it all... I've been on and off it since I was 15 with less than positive results and the only one that seemed to suit was the Mirena (even though that caused me hell for 3 months and stopped working effectively after 2 years despite it's 5 year guarantee) - I did have 2 years symptom-free though, but it's not really an option I could suggest to you right now if you're thinking of IVF later in the year as it's a long-term thing. The advantage of it was though that it can be inserted at the time of a lap without any problems and as the hormone is localised in the womb the side effects like migraines don't really happen like they do with pills. I hope you find an option that works for you whilst you need to be on it, did the doctor have any suggestions of other options, other than the Lupron?

What IF? said...

Sheesh, the waiting is enough to drive anyone insane. I hope you'll have your lap date firmed up soon, and the answers you need in order to move forward with IVF.

BCP give me migraines too, so since my Dec. lap I've been on nothing (in anticipation of cycling). My RE recommended waiting two months after the surgery before IVF to give everything time to heal.

Btw, just like your dx, my ovaries were "kissing", and attached to my uterine wall. RE showed me the pics after the lap... not pretty.

They did a chromopurtobation (dye to check if tubes are open) and hysteroscopy simultaneously. Both those tests came back clear and they were able to save both my ovaries despite the cysts. I hope your outcome is just as good, if not better!

Good luck with the bowel prep prior to surgery, and since you've been through this before, I probably don't need to suggest asking for the first lap appointment of the day, and to ask the nurses to start your IV as soon as you get there, b/c you'll be dehydrated and feeling faint.

Sending you lots of support and good thoughts.

Anonymous said...

It seems as if your doctors are covering all angles. It's good that you're doing a lap - they ended up cutting me open.

The healing was the worst though, for me it was 8 weeks - something I wouldn't wish it on my worst enemy. I think my problems were mostly from the GI doctor taking out part of my bowels. It's a great thing that you are choosing your GI before hand.

I wish you the best of luck - hopefully this will be over and done with before you know it.