Endometriosis, Infertility, Miscarriage and Life in general
I am 34 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD. 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!
Since my last post, I got a referral to a GYN Oncologist, who was able to see me MUCH sooner than the Pelvic Health Center (that appt wasn't scheduled until MARCH!). Thankfully I work at a cancer center. I didn't know, but some of the surgeons in our GYN clinic take on endometriosis patients, and other, surgically challenging cases. After reviewing my paperwork I was seen in early December and am tomorrow 3 weeks post-op.
First of all, let me say that it was BY FAR the BEST laparoscopy I've ever had. When/if I need another, he's my guy! He's a big shot, and, I can see why! He knows his stuff!!! I had little to no (yes, I said NO) pain afterwards (aside from the damned CO2 pain!!!).
I was slated for a 3 hour procedure but from what I know it was less than 1.5 hours. When he first went in, he described to my husband "An extreme amount of blood and fluid" in my abdomen. Awesome. I'm assuming he cleaned that up (???)-Post op appt is tomorrow ;) My adhesions weren't as bad as he expected. He removed my endometrioma, the adhesions he could see (a few on my colon), and called it a day. He said he really was tempted to do a hysterectomy, but, knew it would have to be a total and was hesitant because of my age. I would be ok with a partial at this point, but, I definitely need these (asshole) hormones around for a little while. I've been through medically induced menopause before. No THANK YOU!!!! The world is not ready for that. ;)
So, tomorrow is my post op appointment. Not really sure there will be much to say. I've got my list of questions. We all know I have three options-get pregnant (because that's sooooo easy), IUD (b.c of my migraines, that's my only option as far as BC goes) or hysterectomy (see above). So, here we go again with the waiting game. Waiting game on how long will it be before I can't take it again or some growth has me back in the OR. One can hope it'll be another 5 years. By then I'll be 40, closer to menopause, and maybe more apt for total? Who knows.
So, I sought after a new GYN. Not sure that was a really good idea-don't really think these folks are any better that the old (at least the old ones were used to me), but, it did bring about a repeat ultrasound where they detected a 3cm mass on my right ovary. That damned right ovary. This time they don't suspect an endometrioma, though because of it's characteristics (solid). They say it's a dermoid. (Look it up-SO GROSS!) Only time will tell.
It needs to come out. Thankfully. I'm thankful because I'm tired of the growing nausea. Tired of the swelling and tenderness. Tired of the BLEEDING. And, quite frankly, tired.
I asked for a referral to a new center we have here that specializes in "Pelvic Health" issues and surgeries since my surgical past was a little complicated. It's like waiting to see if you get into graduate school! ;) My records have been sent and I'm waiting to see if I'll be "accepted" as a new patient. I should hear sometime this week. Fingers are crossed!!!
So, the waiting game begins. Ready to get this monster out of me!!!
Ok, so, after having my period again, with only 7 days between two...I have sought another opinion. Of a FEMALE GYN. So, I went on Friday. Nothing new to report from that-she did an exam, ran some bloodwork (TSH, freeT4, etc-all normal) and today I am going in for a "Day 5" ultrasound to see if we can spot anything in there. If nothing, I'll do a hysterosonography (aka, water ultrasound). If that shows nothing, then, we are going to try a progesterone for a few days to STOP all bleeding. Then, I'll stop the progesterone and HOPE that it "resets" everything. If that doesn't help...we'll move foward with other options.
So, I'm feeling more hopeful today. At least there is a plan and not so drastic options being laid out before me.
Until then, I'm so thankful for this little blessing in our lives. I can't even begin to describe how much he means to us and what I feel inside for this child. A true miracle that lights up our lives in every way. As much as I hate my insides, they did end up pulling through for me. I gotta give my uterus some props for that, right (even if it did need a lot of assistance)?!?!?
I'm over my uterus. Over it. I hate it. It hates me. Mutual feelings I suppose. I'm now having my cycle every 20-25 days with light bleeding at least 5 days before. So, I'm bleeding every 15-20 days. I'm totally over it. Not only that, but, my cyclical migraines are back...the ones that I used to only get on BCP.
I can't take BCP because of my migraines with Auras...I don't WANT anything INSERTED inside of me. I dont do well with drugs sometimes...I can only imagine.
I am seriously considering talking to my Dr. about a hysterectomy. Obviously I'm not having anymore children (not for lack of trying). I'm pretty sure you have to ovulate for that? ;)
Give me the pros and cons.
I found a "Center for Pelvic Health" here, and, I'm going to make an appointment. I'm DEFINITELY done with my OB's office. They tell me irregular bleeding isn't a symptom of endo. So, when I looked on THEIR website the other day, why is that at #3????
So, every month is absolute psychological torture for me. The week before my period, I start a little song and dance of spotting on and off. Sometimes it's heavier than others. I ALWAYS convince myself it's implantation bleeding. It NEVER is.
Today (TMI those that know me) we had sex. I went to the bathroom immediately afterwards and realized I was bleeding. Husband, unfortunately, realized it too. Guess how far from my period I am? ONE WEEK.
This is getting out of hand. I will freak out for the next week, convincing myself that I am pregnant. Of course my boobs hurt and I'm tired. I MUST BE PREGNANT. Except that happens every month, far too early.
So, I turned to Dr. Google. Rookie mistake. Looks like I could have 1 of ten things wrong with me, including low progesterone, endometriosis (um duh), polyps or fibroids.
So, after the $20 in tests I'll spend over the next week and ultimate heartache next Thursday, should I make a call to the OB? Or, is this my new normal?
For anyone that has struggled with infertility, heartache, loss...this is a truly inspiring video. Not everyone has their happy endings, but, I feel like this is a good video that conveys what a lot people do struggle with...and that most people don't know about.