Thursday, March 10, 2011

Endometriosis Awareness Day 10

“Endo affects us on so many levels that are often hard to define to people. We can’t express to people that we simply feel sore and don’t want to do anything. That we want to crawl up into a little ball and go to sleep for hours and not face the world or any of its cruel judgment. We feel damaged, broken and somehow completely alone. So alone…..”

      On Monday I went to see my Endo doctor. Because I live in a town with a large university there are doctors, residents, and students. So first I see a nurse, then the student and resident, followed by the doctor, student, and resident. Most of the time, when going to the doctors, you don't see the same resident/student every time. However, working with a specialist I guess it is different because I saw the same resident last year when we were trying to conceive, which is great. It's wonderful walking in and not having to re-explain everything that's ever happened to you. So I went in with no plan. I just wanted something done about the pain I've been having. We decided on putting in an IUD. 

     "The Mirena Coil - The Mirena Coil is used by some doctors to treat the symptoms of Endometriosis by reducing the amount of blood flow in a woman’s periods.
     The Mirena Coil is like many other types of Intrauterine Contraceptive Devices (IUD's or coils) in that it is fitted by a doctor and remains in the womb for a fixed amount of time, after which it must be changed.
Most IUD's make a woman's periods heavier, but the Mirena actually makes periods lighter than usual. Because of this, it is frequently used as a treatment for heavy periods, and is now used as a treatment option for Endometriosis, for the same reason of reducing blood loss with the menstrual cycle.
It is made of a light, plastic, T-shaped frame with the stem of the 'T' a bit thicker than the rest. This stem contains a tiny storage system of a hormone called Levonorgestrel.
     This hormone is also used in contraceptive pills. In the Mirena, however, a much lower dose is released than take the Pill (about 1/7th strength), and it goes directly to the lining of the womb, rather than through the blood stream where it may lead to the common progesterone-type side effects.
     Although the IUD was originally developed as a contraceptive, the discovery that it leads to much lighter periods was seen as a bonus. Many gynecologists now suggest the Mirena as a treatment for heavy periods if tablet treatment doesn't work.
     After 3 months use, the average blood loss is 85% less, and by 12 months the flow is reduced by 97% every cycle About one third of women using the IUS will not have any periods at all. There is no 'build up' of blood, because the hormone in the IUD prevents the lining of the womb from building up at all."

     So they put in the IUD and told me that if I experienced severe pain, fever.. blah blah blah.. to call and come back in but not to worry about the cramping I'd be getting, it would go away in a few days. The cramping did not go away and eventually got worse. This morning I woke up in so much pain I was having difficulty sitting up. My pain soared to a 9 from the 6 it was at. It got to the point where I was feeling like I was going to get sick to my stomach with every stab of pain I was feeling. I called the doctor but couldn't wait for the reply. I called my grandmother to come get Haleigh and I and asked her to please take me to the doctor. I was a mess. I was in too much pain to lift my arms to do my hair - so a sloppy pony tale it was. I was in too much pain to bend down so I couldn't change my jeans, put on socks or reach my wallet which was in the diaper bag on the floor. So I had to go in sweat pants, flip flops (did i mention it was raining?), and hope they would except an IOU. At this point not being able to fully get ready had me so upset I was crying. As I'm crying and limping past my stairs I realized I had to still carry Haleigh and myself up them to get out to the car. I decided to wait for my grandmother to get home in case I decided I couldn't get up them by myself. At the thought of not being able to do something as simple as carrying my infant up the stairs made the tears flow faster. As a 25 year old I should be able to run up and down the stairs and not have to worry about bending down to put on pants or socks. I shouldn't have to apologize for mumbling or being distracted because when I'm in pain it's hard to fully open my mouth or think straight. I shouldn't have to feel bad for asking someone else to drive me places because I can't drive myself due to pain. As a 25 year old I shouldn't have trouble sitting, laying, walking, standing. I shouldn't need help getting myself to and from the bathroom. All of this had me in hysterics (and often does at least once every three months). I knew I had to sit down and calm myself because I know crying will get me no where and stress only agitates my pain more.

     At the doctors office I asked to see my doctors nurse and went to sit down. I could hear them talking about me - obviously they thought I couldn't hear them. 
"Nicole is here, she'd like to see Dr. Soandso's nurse"
"She was here at the beginning of the week right?"
"Yes ... (in a lower voice) she looks like she is in a lot of pain. a LOT of pain"
Nurse walks by trying to look like she was doing something other then looking to see how distorted my face was from pain. 
"Oh wow. I'll get Dr. soandso"
A few minutes later I'm brought in to a room where I'm told to drop my draws and sit on the table. I do as told because I know they are going to check to see if the IUD has moved, disappeared so on and so forth. My parade of doctors (Doctor, resident, student) come in, see my face, share their 'sorry for you' looks and get to work. They check everything and tell me that the IUD seems to be in place but they are going to check via ultrasound machine to make sure plus they want to check for anything else abnormal. Maybe a cyst that could be causing pain? Sure enough on right side I have a cyst that is as large as my ovary itself. We talk things over and here are my options: take IUD out or leave it in and re-evaluate in 2 weeks, either option comes with pain pills and advil every 6 hours. I decided to leave the IUD in. My doctors have faith that it will work if I give it time. They do NOT think that the IUD is what is causing this pain. So I'm going to give it a go. I have an appointment on the 21st to go in and discuss where I want to go from there plus see how the cyst is doing. They think that the medicine in the IUD will make the cyst disintegrate. I have faith it will work. or at least I did until I read this

"Negatives of the Mirena Coil

There are many who feel that the Mirena Coil is very unsuitable as a treatment for Endometriosis as this particular type of Coil increases the risk of developing ovarian cysts.
It is the use of synthetic Progestogen hormones used in the coil that increase the chance of benign ovarian cysts. This is more common with the higher hormone levels associated with the progestagen-only pill. Overall the risk is about 3 times higher.The device could also lead to other complications of infection in the womb."

     So for the same reason the doctor told me my cyst would disappear this website is telling me one will appear. Great. After contemplating how I feel over this, I think I'm still going to stick with hopeful. I'd rather be hopeful then disappointed. So for right now I'll just be laying here in the bed with my pain pills, water bottle, laptop, book, and sweet little girl. I constantly thank God for blessing me with a beautiful little girl, many women in my situation aren't as lucky as I am. I have a beautiful little smile to light up my dark days. No matter what I am going through I need to remind myself how truly blessed I am.

     I hope this all makes sense since I've written it after taking my pain medication. One reason I hate pain medication is how fuzzy it makes my brain. Anyway, now I'm going to lay down and relax. Tyrone will be home soon and I can nap while he watches the baby. Until next time...

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