I am so sorry you are dealing with so much pain and frustration! Too many of us have walked a very similar road and my
goes out to you!
First, as others have mentioned, you need to be very aware that a hysterectomy not only doesn't cure endometriosis, it can also open up a whole can of other issues. There are a multitude of side effects to a hysterectomy from physical to emotional. Just take a look at our specialty forums to get a peek into the potential problems: sexual dysfunction, adhesions, bladder matters, pelvic floor issues, hormonal imbalance, chronic pain, nerve entrapment, continued endometriosis concerns, and more.
Fertility concerns definitely need to be considered, especially with someone your age. While you feel that you do not want children now, your feelings may change over the years. We change as we age. Many of us changed our minds about having children as we found the right partner, our life situation changed, we came in contact with a baby that opened up a desire we didn't know existed...
And many, many ladies who have felt that losing their fertility would not a problem--just end this pain--found that it was a problem down the road. We have thread after thread on the site posted by women who had never even wanted kids so why were they grieving now? Grandmothers with no desire for a baby post that their heart is breaking because they can no longer conceive. I was one who thought I would be fine. After all, I was 25, happily married, and had two boys. Six years later, completely out of the blue, I was slammed with the loss of my fertility. One thing that can happen for those of us who are younger when we have a hysterectomy is that our peers start having babies and we get left out. Holding their babies stirs up a longing deep in our hearts we didn't know existed.
Instead of a hysterectomy, I would recommend that you seriously consider finding an endometriosis specialist
. I realize this can be an expensive route that requires traveling--been there, done that--but it can be very worth it!
Based on my own experience--a hysterectomy not curing the endometriosis and opening the door to a whole host of new health issues because of surgical complications--I would never recommend a hysterectomy for a 19 year old women with minimal endometriosis unless she has undergone a complete examination and surgery with an endometriosis specialist.
Remember, removing the uterus may not even stop any pain. The uterus is not the problem when it comes to endometriosis. The problem is the endometriosis itself and where it is implanted. The key for treating this condition is the skillful removal of the actual endometriosis implants. If the endo remains, so do the symptoms. In fact, the symptoms can increase because of adhesion formation, surgical risks, hormonal problems, the remaining endometriosis, and more.
My best advice for you is to keep a very detailed symptom dairy. You might find using ReliefInsite’s online pain diary
Then, look for a doctor who will listen and work with you. Again, your best choice is going to be an endometriosis specialist
. You may find one who will be willing to work with you on the financial side of things. Or you can do as many of us have done and file an appeal with your insurance company for extended coverage and benefits for the specialist.
If do not feel you can pursue the endo specialist route, find a reproductive endocrinologist or gynecological oncologist. These types of doctors can be knowledgeable and skilled with treating endometriosis, more so than a general OB/GYN. Other surgical choices could include gynecological surgeons who are trained in minimally invasive surgery.
Besides Lupron, you could consider an aromatase inhibitor. Some women are finding this newer treatment option successful. Other choices could be Depo Provera, pain management with a pain specialist, excision of the actual endometriosis, nutritional therapy, or even non-conventional treatments such as acupuncture, chiropractic care, massage, physical therapy, and more. (http://www.endometriosis.org/treatment.html
What ever you do, don't give up! It is important that you find a medical team you trust who will work with you as this condition is one that can go with you all through your life. Additionally, those of us with endometriosis also tend to have a whole host of other health issues so it is vital that we have a team in place to work with us as any of these issues creep to the forefront.
in there and know that we are in your corner!