16 with endometriosis: a reply

I received this comment on the post Stage of Endometriosis and felt it much better to address the answer in this fashion. The comment follows:

I am only 16 and i have endo. I am always in a lot of pain and i have been given birth control in order to control my endo.It always make me feel so sick. Im not really even sure if it is a very serious problem and the docs have made me feel kinda stupid about it.
Any advice? – jess73

This is not the first time I have received a comment like this, and unfortunately because of the nature of this disease, I am sure it will not be the last. But, because of the overwhelming frequency, I felt making an example of this comment – thank you very much to jess73 for asking it – would be more fruitful for those who stumble upon this blog in search of answers.

First, let me tackle the birth control and endometriosis band-aid enigma. Jess73, and all the rest of us endometriosis patients, have or will learn at some point that medical science is at a loss as to what exactly causes endometriosis. Yes, they don’t know. And because they don’t know, they don’t really know how to fix it. They throw hormones at it, struggling in vain to quench the fire that feeds the implants (“quick! grab that hose of Lupron and suppress her estrogen with chemicals, there’s endo growing on that ovary!”). They slice and dice and burn and excise until our abdomens shun bikinis and begin to look like a battle has been waged with mini nuclear warheads on its surface; our belly buttons deformed from the bloodshed.

And the doctors’ first line of hormonal attack: birth control pills. Those little multi-colored, hormone packing pellets work for some and are intolerable for others. Yes, some with endometriosis swear by them. They would never be without them! They take the 4-month-on packs and relish in the glow of no periods and pain. But for others with endometriosis, a rather large portion of us I’m afraid, those tiny pucks may as well be pure poison because they bring nothing but toxic nightmares into our lives. Anything from migraines to constant bleeding and pain to violent mood swings to the woman who is hormone sensitive. Some people are lucky and get one bad symptom, and perhaps they can live with it and stick it out for a while on the BCP rollercoaster, but others hit the jackpot and life becomes unbearable.

Birth control pills can make you feel very sick. They are loaded with nasty, unwanted side effects. Anyone on any medication should familiarize themselves the with side effects. If a strange and new symptom is lingering, check it out and see if it’s something you can live with or need to see your doctor about.

Next, jess73, as to your doctor situation… you have two things working against you. In one corner, you have endometriosis. In the other corner, you are 16. Many doctors, especially males, can’t even begin to fathom how painful endometriosis is. Endometriosis is literally a silent life sentence because you feel you are living a life sentence without parole and you have no one to talk to because no one understands. Internal chronic diseases are extremely difficult for someone to connect with unless they have it too.

And finally, and not least in any way, endometriosis is very important! It’s important for it to be treated while you are young. As you age, endometriosis will continue to grow. If this grows on the fallopian tubes and ovaries, it can cause fertility problems. It’s vital that, if possible, endometriosis is dealt with before marriage and children are discussed.

Advertisements

11 responses to “16 with endometriosis: a reply

  1. Thank you so much for responding to my questions!

    • You are very, very welcome. This is what I do; why I blog. I hope you stick around and continue to read other posts and comment!

  2. Thanks, Endochick. I wish all young girls living with endo could read this post.

  3. Endochick… I’m going to take the liberty of commenting back to jess73…

    jess73,

    Endochick did a nice overview of the fact that treatments for endometriosis are less than ideal and doctors generally don’t understand endo well enough or take endo patients seriously.

    I hear what Endochick is saying with, “endometriosis is literally a silent life sentence because you feel you are living a life sentence without parole and you have no one to talk to because no one understands”.

    I would like to stress one word in the above paragraph: FEEL. You may FEEL you have no one to talk to & that no one understands — UNLESS you develop relationships with fellow patients. I remember the first 10 years of my endo symptoms… where I felt VERY alone with my symptoms. In the 17 years since, I do NOT feel alone because of endometriosis support groups locally and then a discovery of a rich world of online support (including this very blog and Endochick herself).

    Endochick is right that internal (or “invisible”) chronic diseases are extremely difficult for someone to connect with unless they have them too. For this reason, forging friendships with fellow patients is crucial, in my experience, for being able to cope and move forward.

    Finally, it is sadly common for doctors to “make patients feel stupid about endo”. It is crucial to work with doctors who respect endo patients, who are highly skilled in diagnosing/treating it, and who treat patients with the dignity they deserve.

    If you do not feel your doctor(s) give you the respect and high quality medical treatment you deserve, I suggest advocating for yourself by getting a 2nd opinion, switching docs if needed, etc.

    I am terribly sorry you are dealing with this at 16. My endo symptoms began at 13 and I remember what it was like coping through all this as a teenager. I’m 40 now and it has been quite a journey for me.

    I wholeheartedly agree with Endochick that endo is serious and needs to be treated as such. Since endo does cause infertility for some of its patients, it is important to take it seriously for that reason (as well as other reasons such as pain management). Good luck!

    Jeanne

    • Jeanne –

      Thank you for your thoughtful comments to Jess73. You are correct in the importance of banding together with others who are inflicted with this terrible chronic disease. Like minds united for healing and support.

  4. Endochick,

    Rock on!

    Jeanne

  5. Is endometriosis a auto immune disease also?

  6. i am always tired lately is this another symptom?

    • It’s not uncommon to feel tired and weak when we are in pain. Endometriosis can make us feel tired especially when there is heavy blood loss during menstruation. I would suggest consulting with your doctor and having your blood levels checked for possible deficiencies.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s