I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!





Thursday, February 28, 2008

Appointment with the RE today

RE=Reproductive Endocrinologist

I had my appointment today at the REACH clinic in Charlotte. It was a very pleasant (as pleasant as a Dr.'s visit goes) experience. Everyone there was very warm and friendly. The Dr. was very knowledgeable and was able to answer all my questions with great detail. I learned even more about my "disease" than I knew before...all in all it was a very educating afternoon.

So, first of all, I finally heard a stage associated with my endometriosis-Stage IV. There are 4 stages, all increasing in severity. Having an endometrioma automatically places me in Stage IV endometriosis...I didn't know that. Pesky -oma! Anyway, and, I heard again about how severe things really were-sticking bowels to pevic organs, ovaries to abdominal walls, and all sorts of fun stuff. A mess...I was a mess; I am a mess. This is why everything wasn't able to be removed. He said it would nearly be impossible to have removed everything-that would have involved bowel resection and all sorts of not pleasant things. So, where do we go from here?

He said that my OBGYN's suggestion for Lupron was appropriate/reasonable, based on my disease (especially with the GI symptoms-this would be the most appropriate course). In terms of fertility...it can be very beneficial for us. He recommends 3 months (versus 6), with automatic add back therapy-which I found interesting. "Add back" therapy can help with the symptoms and adverse effects from the medication. Some Dr.'s don't use it right away-and he said that's because they aren't educated enough about it-to prescribe a synthetic progesterone....that way there isn't any estrogen being added back. So, that was positive to hear..

No one has been pretentious (is that the right term) when prescribing this medication. They aren't promising me a cure-I know there isn't a cure, and they have been sure to explain that properly. Also, they have been very forth coming about potential side effects, and very encouraging of us to do our own research. I think at this point, we feel more comfortable about moving forward, and feel more educated. Still scared...but, looking ahead and not down.

Our plan:
Next month at the beginning of my cycle, they are going to run some blood tests on FSH and estradol (I know I am not spelling that right)-to check out what he calls my "ovarian reserve" before we start treatment. Just to see where we are in terms of fertility in that respect. Mid cycle I will receive my first shot, with add-back therapy. At this point, my body will go into a medically induced menopause (thus, all the lovely sounding side effects). This will continue for 3 months (1 shot each month). If I am really doing well on the medication with no serious side effects, we may continue out for another 3 months. When done with treatments, it will take a few cycles to get my period back.

After my body kicks back into gear, we will start trying naturally to have a baby. Now, he has already warned us that we are in the 60-70% that will probably need further fertility assistance...anatomically speaking from my disease stand point. He said, you never know what can happen, but, he just wanted us to be informed. So, we'll try on our own for three months.

If we aren't successful, at that point we'll both get some testing done just to make sure everything else is working properly. If those tests turn out fine, then we'll try another 3 months on our own. After 6 total months (normally they would give a year, but with my stage IV endo, they don't want to wait that long) if I am not pregnant in that 6 months, it probably isn't going to happen on it's own. At that point, we will begin IVF if needed.

I like having a plan. And, the plan sounds good and reasonable to us...and I am feeling more comfortable about everything. Knowledge is power-ya know? I am so glad that we went today and I feel good about talking about things in terms of fertility and the future. So, my OBGYN and RE will be working together. I'll go to the OBGYN for Lupron treatments based on the RE's recommendation, and then back and forth between RE and OBGYN for baby stuff! Haha, I asked if I went back to my OBGYN to have the baby, and he said, "We don't catch babies here...I went to school for a long time so I didn't have to get called in the middle of the night". HAHA! I liked his sense of humor. He made me feel very at ease. So, this will be a collaborative effort.

Also, on the GI note, if my symptoms go away with the treatment...then we know it's related. If not, I'll know to investigate further. It's so interesting how all the systems work together.

So, here we go. I'm going through my cycle now. It hasn't been too horrible. I've had quite a lot of nausea, which is unusual for me, but, I'll take it over the unbearable pain any day.

This is a crazy weird thing that I have, but today is a good day and I am feeling ready to tackle it. Please keep us in your prayers as we approach treatment and go through all of what this will bring into our lives. It might take a lot of patience on both of our parts...but I hope that this will be an overall positive experience ahead. Keeping our heads up...thank you for all the support. We wouldn't be so confident without you all.

1 comment:

endochick said...

I will keep you in my prayers. My gyno is urging me to try Lupron - just one month and if I can't tolerate it, we'll stop. And that's with the option of add-back. I'm hestitant because of s/e and my other chronic conditions. And, as superficial as it sounds, having recently lost 71 lbs, I don't want anything in my body that can put the weight back on. I gained 30 lbs with 3 months of Depot Provera. I worry about this happening again.

I sincerely hope Lupron works for your pain. I, too, have stage IV. I know my options are slim. Somehow, knowing your options are slim makes you feel trapped in a no-win situation. You know?