This is not my first time blogging or writing about suffering from Endometriosis and PCOS. I began writing about a year ago, while being diagnosed, but found that things became overwhelming and decided to take some time to get my feet back on the ground and wrap my head around everything. Almost a year later I am looking back on things with an entirely new perspective. I have undergone anything the doctors had to offer. I have done the diets, yoga, all natural & organic. I have done the medications and injections (Lupron) offered for treatments. I have had the MRI's and ultrasounds and I have had the surgery that removed a mass of Endometriosis from my left ovary and tried to remove as much of the disease as possible from my body. I have had it all and I am going to share my experience with you, all of it. I am starting this blog again because I feel Endometriosis/PCOS needs to be talked about, acknowledged. I want to share my story, but first I want to give you the tools to understand my story. I will begin with telling you what my diseases are.
Yes, it is awkward.
Yes, it has to do with the female parts.
Yes, the details are not pretty and clean and easily checked off in a box in the doctors office.
Endometriosis and PCOS are complicated.
Endometriosis and PCOS are complicated.
. We need to learn about them. We need to know what the signs are for earlier detection. We need to know it is okay to acknowledge symptoms that make us feel like we have stepped out of our own bodies. We need to talk about having pains, depression, weight gain, acne, fatigue, cramps, headaches, moodiness, hair growth, bloating. We need to talk about the days of avoiding activities or friends and the days where sweatpants and heating pads are the best invention ever created. If we don't talk about it then it goes undiagnosed, untreated, and you are left feeling like it's your fault. You feel like you are going mad.
Let's talk about it..
First, Endometriosis is...
To be straight forward Endometriosis is a female disease where the lining of the uterus, the Endometrium, grows outside the uterus and covers other organs of the body when it would normally leave the female body during menstruation from the inside of the uterus. This build up of tissue can cause blockage of the organs (fallopian tubes, ovaries, intestines) and their intended functions. It can also cause the adherence (endometriosis acts like glue) of organs to the walls of the body or to other organs. It can also cause large masses to form inside the body. Endo can also cause infertility or difficulty conceiving for women if the scarring and tissue build up on the organs becomes to great.
As you can imagine this can be incredibly painful and makes even the easiest of movement, like walking to the bathroom, a nightmare. You can have horrible cramping and fatigue and your hormones are on a rampage. You feel like a bloated emotional monster. You can carry more weight around your abdomen, thighs, and upper arms. You can have severe acne due to higher levels of testosterone flowing through your system (yes, ladies we make testosterone too). Your metabolism is shot and your thoughts are all over the place. You are not you.
But hear me..
You are not crazy.
You are sick, and the nice thing about that realization is once you know this, you can begin to treat. There is no cure for Endometriosis (yet), but there is treatment to control it and despite what the endless hours of Webmd and that message board and blog site you have been pouring over says, it can get better. Sitting on the internet at 3am left me terrified I would feel this way forever and nothing would ever change, but it did. The chances of a good treatment outcome come through early detection. I was one of the few that was diagnosed much earlier than the average diagnosis age of about 27 years old.
Endometriosis can not be identified or confirmed through blood test, ultrasound or MRI. The doctors go in through Laparoscopy, a surgical procedure inserting a small camera through tiny incisions in the pelvis area and bellybutton.
For treatment options some doctors may speak to you about using a drug known as Lupron. This is a very controversial drug that needs to be a woman's own choice to use. I was at a place that I needed this medication to get shrink my endo as well as have a better chance of having a child one day. I went on two cycles for three months each injection. I will give my experience with the drug when I tell my personal story, but again it is every woman's own decision to take it. Lupron shuts down the pituitary gland and makes it so a woman no longer produces Estrogen, therefore entering chemically induced menopause. This brings side effects that can take a toll on the user. There are horrible and terrifying stories all over the internet about Lupron, but in my experience it helped with my Endometriosis. I do not regret accepting Lupron, but that being said, it was the hardest six months of my life.
PCOS
[PolyCystic Ovarian Syndrome]
This disease takes a little different form, but with the same type of emotional and physical toll.
PCOS comes from the imbalance of hormones in the female body (estrogen/androgen). When your hormones go out of balance everything inside your body reacts. You can stop ovulating or develop large cyst on your ovaries and other areas of the pelvis that rupture or tear and causing incredible pain (I have been told by nurses equivalent to natural child birth). Now, before you freak out ALL women form tiny cyst on their ovaries, called follicles, this is normal. PCOS cyst are larger and more painful and usually form multiple cyst at once (poly). This disease can also cause insulin resistance in the body that can lead to many women becoming obese or developing diabetes. Losing weight with PCOS is one of the most difficult things to accomplish.
Other symptoms:
- Hair thinning on scalp
-Excess hair growth on face and arms
-Severe Acne
- Fertility problems
-Emotional tolls
PCOS can usually be identified through cyst detection on ultrasounds and blood test. A medication called Metformin is sometimes prescribed to speed metabolic break down and help in weight loss accompanied with a diet plan usually formed around the diabetes Association guidelines (lower sugar and sodium intake).
For both diseases a birth control or IUD is sometimes given/recommended as a form of treatment. For more extreme cases of Endometriosis women need to have a hysterectomy or oophorectomy performed to stop the pain.
Anxiety, depression, low self esteem, moodiness, and paranoia are all possible emotional tolls these diseases can take, please let me say again..
You are not crazy
To end this post I would like to say this as clear and straight forward as I can...
I am not a doctor. I do not have all the answers. I implore you to speak to your doctor if you have concerns, push if you have to. I saw multiple doctors before I got answers. I am only giving my personal experience and understanding of Endometriosis and PCOS. I know what it is like being scared and being confused. I know what is like to spend hours researching the internet and being terrified you are losing your mind. I know what you are going through. I know what it is like going through treatment, countless medications, diets, and surgery. I know what it is like to not have answers and I want you to know that it can get better.
It is possible to get better.
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