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!





Wednesday, April 8, 2009

Thoughts of the day

I've been having "internal struggles" about the surgery. On the one hand I am thankful for what they were able to do in terms of saving my fertility and getting that show on the road. On the other hand, I'm filled with doubt and concern that my all too familiar symptoms will quickly return, putting me back in the OR within another 13 months if we are unable to conceive. I mean, there was a lot that was left untouched. This disease really sucks. They don't know much about endometriosis, so, cutting it all away I guess really isn't a reality anyway, especially with my extent of disease. A lot of it is microscopic, and, even the microscopic portions can cause pain and symptoms as I have felt before. And, even if they peel my organs apart, there's nothing stopping it from coming back. Birth control has proven pretty effective as far as pain management goes with endometriosis, but, there is nothing out there long term that keeps it from coming back. And, I can't take birth control-it causes adverse reactions. Lupron (ack!!!) acts in keeping the endometriosis from spreading, but, it's only approved for 2 6-month courses over your lifetime. And, we saw how well that worked for me, right? So, yeah. I know I should be grateful, but, part of me wishes they could have done more. I guess there is always more to be done, and, I should just keep my head up and forge forward. Which, I plan on doing, but, sometimes you stop to ponder these things along the way.

Healing continues. One of my incisions seems to be reverting back to nasty stage. I will not hesitate to call tomorrow. I had one of the nurses at work look at it today, and she agreed. Ughhhhh. My belly button still has a good amount of discharge...and, it's veering on the revert side two. My others seem to be doing very well; I am definitely thankful for that. And, thankful that I can wear scrubs to work!!! Those have been a lifesaver this week for sure!

9 comments:

Kelly said...

I totally understand! It's only been a few months since my surgery and I am already feeling the pulling and stabbing pains again. Every time I look in the mirror I see my scars and realize this will never be truly "fixed". Cutting, burning, birth control only really mask the issue. I hope you don't have to call your doctor tomorrow!

Faith said...

Yikes. I have had 2 rounds of endo surgery to date. It's a scary disease. You're in my thoughts as you work through this.

Yaya said...

Honestly, I would be optimistic about conceiving soon. I had my surgery and conceived 5 months later (unfortunately miscarriage) and then conceived again 5 months after that (unfortunately another miscarriage). Speaking of miscarriages-make your doctor put you on progesterone once you get preggers. You've been through enough-get that extra progesterone to be safe.

callmemama said...

Those are all the thoughts I had after my 2nd surgery last year. It's a horrible feeling to be recovering from a surgery and know that there is still disease inside of you. That is why I decided to fly to Atlanta for the third one. Honestly, if I could go back 3 years and go there for my first one, I would. It's just sad that there are only a few docs in the US who are qualified to do excision surgery...and who know how to remove it ALL. The CEC success rate is outstanding. Of course, I'll have to wait a year to see if I'll have that same success. But already, my insides feel better :).
Hope your recovery continues and you get some much-needed relief from the pain!

Amanda said...

I'm sorry to hear your wounds are reverting back and hope that you manage to stop them getting really bad again. Endometriosis IS a horrid disease and I hate to hear how it affects people's lives in so many ways (sometimes I feel very much detached from how it affects my own life which is weird 'cos at the moment it affects me a lot but it's almost like I have chosen to ignore it in a way and so reading blogs like yours really brings it home to me how much it affects so many women!) I don't mean I hate the hear peopler talk abot it - I mean I hate that it makes people's lives so miserable - I hope that was clear!

I'll be thinking of you lots over the coming months and hoping things go well for you - how did you do on Lupron last time?

Barefoot said...

Sorry to hear the incisions are starting to give you trouble again....but a serious hooray for scrubs!

My Endo Journey said...

Amanda-

The Lupron didn't really have any long lasting effects with me. I stopped in July (because I was having some ocular disturbances) after 4 months; and sometime between July and Dec I had a 4+cm mass on my ovary, and, my ovaries were glued to my pelvic wall.

Amanda said...

Gosh I'm so sorry to hear the Lupron didn't help much as it is such an awful thing to go through in the first place (I only made one month on it as my reactions were so bad I couldn't function at all and since things have actually been worse). I hope this time the endo doesn't start causing problems as fast, you poor thing x

katery said...

i hear ya, i really wish they could totally fix everything with surgery.