Friday, November 12, 2010

What is Endometriosis?

Endometriosis is a disease. A very painful disease. The tissue that are found in the cells that line the uterus called endometrium, form in other places OUTSIDE where they belong. Some places that these cells are typically found are on your bladder, bowel and around other surgical scars. ( It can be around other organs as well.) It can be found on other sexual organs and inside your fallopian tubes.

The thing about these particular cells is they have a "memory," so when your monthly cycle is not hindered by hormones ( like birth control) they act like they should if they were found in your Uterus. The problem is, they aren't IN your uterus. In turn you get internal bleeding, scar tissue build up an no way for those cells to leave your body like they are suppose to. I leaves you with bowel issues, incredibly painful cramps and infertility or problems getting pregnant.

Symptoms of endometriosis are VERY painful periods. Sometimes those cramps are so bad that they make you sick to your stomach. For me, my legs go numb. We know I have endometriosis on my bladder and my bowels and on my tailbone. We know that I have some on my sciatic nerve. So when certain times of my cycle come I can't feel my legs and my lower back is so tender you can't touch it.

Other symptoms include 3 weeks of cramps and pain like you were having a period. Bowel issues including chronic constipation, diarrhea and an upset stomach off an on throughout your cycle. ( When mine is bad and I know I should be getting treatment of some sort for it I have all of the above but have morning sickness like stomach ache.)

It causes painful sex, painful bowel movements during your period and frequent yeast infections. ( TMI on which of the above I get so, well, pick one (or three) and you are probably right)

The amount of pain that I have varies throughout my cycle and really depends on what types of hormones are currently in my body. For now, about 3 days before we think I ovulate I am SICK SICK, and I am fine for a few days after ovulation and then the full 2 weeks before my period I have cramps, a back ache and my bowels are not friends with anyone but a throne.

No one knows what causes endometriosis. There are several things that they "think" are possible causes but basically they just don't know.

To be diagnosed with endometriosis you have to undergo a laproscopy. Though it can be assumed by symptoms it can't be confirmed until you have surgery. My first surgery was when I was 20. It was confirmed then. Since then we have had treatment with drugs, depo lupron and more surgery.

The treatment options for endometriosis are slim. There is pain management. High doses of naproxen are given for every day pain. Sometimes narcotics are issued depending on the severity of the endometriosis and the duration that you have gone without large and better treatment options. Hormone replacements, such as birth control, shots of depo lupron and to have a baby. The only "cure" is a hysterectomy. ( which once we have another child we are doing)

When you are pregnant your endometrium don't grow any more. With nothing feeding them they tend to go away. The down side. It is hard to GET pregnant. Most want children and Most doctors won't do a hysterectomy until someone is 30.

The most common medicine given for Endometriosis is Depo Lupron. Which turns you into a crazy crazy person. Trust me. 4 rounds later and at different times in my life, it makes you a VERY different person.

How this effects our fertility?

In order to go through infertility both D and I had to be tested for every test under the sun to determine where the infertility was coming from. In easy terms Dallas is super man. The problem lies with the endometriosis ( aka me!) We started trying and of course can't use birth control in order for that to happen. When things got bad we started a round of Depo lupron. So I guess you could say it was put on hold. Since then the pain has gone from only hurting a week before my expected period to 3 weeks before my expected period. With the 1st week, the week of ovulation, so bad I can't feel my legs. Though we fight through the pain and issues, we are still not pregnant. This is even with ( TMI mom... don't read) well timed intercourse.

When the only solution is to get pregnant or have a hysterectomy we are running out of options fast. Endometriosis is real. It is not a made up condition. It hurts millions of women each year. I just happen to be one of those.

Please feel free to ask any questions you feel you need to in order to understand the condition.


Shannon said...

Great post. I suffered for over 15 years with everything you've discussed. Non-affected women absolutely can't understand. It is pure misery. Since my hysterectomy two years ago, I have my life back.

Cynthia said...

Thank you for describing that so well. I generally know what it is but had no idea about all the other 'fun' stuff that comes with it!

I am SO sorry you have to go on Lupron. Of all the infertility meds I've taken- the Lupron that was used before both of our IVF's was, by far, the worst! It made me SOOOO emotional and I'm not generally a weepy/crazy person.

Someone who had wronged me badly had the misfortune of needing something FROM ME that was equally important to them during the time I was on Lupron, it was not pretty. I even tried to hold back but it just wasn't in me. That was 13 years ago and I would imagine that woman STILL hates me. Had I not been on Lupron, I probably would have been more forgiving/agreeable but on that med, my normal, 'even keel' self was totally crazy. That is NASTY stuff! I am so sorry you've ever had to use it.