Sunday, March 14, 2010

Endometriosis Awareness- Get comfy :)

Endometriosis Awareness month is in March. Since it is pretty much the Middle of the month I thought I would share my story and my battle. In hopes of helping someone else and , well because it affects so much of what happens to us as a family and how my every day life is impacted.

Back in the day ( like Junior High) when all my friends were getting their period I was the "lucky' one who didn't. 9th grade came and went. Sophomore year came and went. Junior year came and ONE period came. I was 16.

My mom took me to the only OB in the area and we had a few appointments. At the time there wasn't much concern and it came about more like " Here, take these.They will make you have your period."So as a SMART 16 year old I thought " Why would I do that?

Senior year was a period every few months. Nothing like clockwork. Why? I wasn't going to make it come. It was painful. It hurt. It hurt A LOT. At this point I was living in a house with 2 people who had their periods and I was by far the "sickest."

College life started and we decided to go to a doctor in Provo to see if there was something we could do. This is where I met Dr. Anderson. I seriously LOVE this man. He put me on birth control for several years.

In 2001, I was still suffering from weird, painful and horrific pain. Not just during my period but also during other times of the month. I grew a few cysts and things were looking a little more toward needing to diagnosis something else. The only way to diagnosis our next step was surgery.

Dr. Anderson was pretty sure that I had endometriosis. So surgery was scheduled and my first laproscopy was preformed.

At 21 I was officially ( because you have to have surgery to actually GET the diagnosis) diagnosed with Endomtetriosis. I was told that endometriosis can cause infertility and that having babies was usually a cure but getting the babies there was tough. I was told get married, have babies and feel better.

My solution in 2001-2002 was head off on a mission with birth control in hand, ready to take on the world. Instead, I got sicker. Around the end of my mission I knew the birth control wasn't working. So when I got home we tried my first round of depo lupron.

Depo lupron is ROUGH. It is not a pretty drug. I moved to Logan and would drive down after 3 months for my very last shot. And about six months later. We found me BACK in the OR getting my second Laproscopy. This was around October of 2004. Again the joke was to go get pregnant... and get pregnant soon.

By April ( six months) after surgery Dallas and I found out were were expecting a baby. I was using the Nuva ring at the time but apparently either user error or luck we were still expecting.

We had a lot of complications with Tyler. Not just his early birth but we found ourselves in the OB office a few times a month with bleeding and placenta previa. The Placenta previa was found to have "resolved" when we switched OB's right around our 18th week. (While we don't know for sure if that is true it doesn't change our end result. )

When we delivered Tyler at 25 weeks and 3 days it was not "because" of anything. We have an unknown cause of premature delivery. But the delivery was traumatic for not only me but for my body. While having a C-section I had a contraction on Tyler's head so a vertical cut was made on my uterus. I developed blood clots that resulted in my wound having to be reopened and a three week course of a nurse coming 2 times a day to unpack and pack my wound. I ended up on a wound vacuum that would be changed 3 times a week at a wound clinic at LDS hospital. Then I would need reconstructive surgery on the wound because it didn't heal all the way.

All of those things resulted in scaring on the inside of my body known as Adhesion. The more scar tissue you have inside the more hurtful it is. I was put on an IUD and had been off and on birth control along with the IUD for several years after I had Tyler. I also did another six months of Depo lupron at that time.

In March 2008 I went in for my third laproscopy. This one was so nice! I felt so much better. The above mentions adhesion's were really bad. My uterine adhesion had stuck to my sciatic nerve causing pain when I walked. I also had adhesions on my bowels and bladder which they were unable to remove due to the risk that would happen with them touching and removing things in that location.

I had several endometrial spots along with an endometrioma that was taken out. I have since had 2 other enometrioma's that have resolved but are very painful.

In April of 2009 we decided that we really wanted to add another one to our family. Although all was cleared with our perinatologist, as chance would have it, we can't. Because of my endometriosis we have secondary infertility.

December was pretty rough and I found myself with some dysfunctional bleeding. That resulted in yet another round of Depo lupron which has brought us to now.

Having endometriosis has not been the easiest thing for me. Growing up I wanted to have 12 kids. Obviously after our eventful pregnancy with Tyler that wasn't an option but the spiritual, physical and emotional need and want for another child is still there. Yet the physical ability is hindered by having endometriosis.

Though our "trying" only went on a year a ultrasound and pain showed that my endometriosis is back. Because of the condition of my uterus and the adhesion's on it I am not able to have surgery this time. Yes it might make the fertility issues go away, it would also put a child at higher risk.

Another really not nice side effect of having endometriosis is having IBS. Yep. I can tell when things are not working right from the endometriosis because of how bad the IBS is. There is nothing that I can do or anything a doctor can do.

The side effects of the Depo Lupron leave something to be desired. Hot flashes, bowel problems, migraines, severe body aches and joint aches, weight gain, and depression. Sometimes I wonder what is better.. the pain or the side effects. Taking the medication doesn't guarantee that the end result will be what we want.

The only cure for endometriosis is a hysterectomy. So in good sound mind, the next one is it.

Please take the time to read the links that are on this blog. I hope this gives you a glimpse into me and our struggles and our triumphs.


The Mom said...

Nancy what trials and triumphs your family has had! I too know what not being able to have more children is like but unlike your pain no body could ever discover why I couldn't other than I don't ovulate. I was lucky enough to get twins after years of giving up hope but that's how we are where we are now. Pregnancy is one of God's greatest gifts to us but it is also very scary and our bodies have minds of their own regardless of what they should be doing. I wish someday for you to get the wish you desire of more family. Although life with one child is so much different once you add more to the group. Good luck and keep smiling!

Preemie Miracle said...

Thanks. WE are hoping the steps we are taking will give us a baby. We do desire to have one. Just one....

MomBabe said...

This sounds a lot like me... I had a hysterectomy in in January of last year, and the second I woke up from the surgery, I felt better than I had in YEARS.


Anonymous said...

I was told I had the worst Endometriosis of anyone my age. Mine was labeled a stage four after my surgery. I had an experimental procedure where they cut a pain nerve near the base of my spine, cut leasions off my stomach and packed it with manmade material. basically my uterus, stomach and bowels were attached to the left hand side of my body with scar tissue. My appendix was being pushed down inside my uterus. The appendix had to be removed. I now joke that I was about to give birth to a baby appendix.
I did not have another surgery so far and it's been seven years this December *crosses her fingers*. I had to have a series of shots for 7 months after the surgery and I went on continous birth control pills (start a new pack every 3 weeks).
I have a little tinge sometimes, I had to change my diet to include less acid (for the stomach thing) but other then that I'm doing alright.
People still tell me they can't believe I went through that but ya will do a lot when pain keeps you from being able to even move.
My doctor was Dr. Griffin and he was amazing. A really compassionate decent surgeon and guy. A man knew more about Endometriosis then any female doctor I'd seen.
If you're in Missouri and think you have this Columbia, mo is the best place to go. Their new Endo specialist is Dr. Barrier and he uses some different kinds of treatments.
I had some issues with my stomach like tensing up and hurting and he did a massage along a nerve in my back and it stopped immediately! It's nice to be around doctors that learn a variety of treatment methods.
I am sorry to hear sad stories but I didn't have to have a hysterictomy (that in itself is a risky procedure) and there are sometimes a great deal of other options you just have to be willing to try them.