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Anne's Endometriosis Homepage

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OBGYN net has tons of great endo info
Endometriosis Assoc.
Endospot..a great new page!
Jennifer Lewis' homepage...a truly wonderful site and person!
Thrive Online...messageboards where you can read/post questions
Click here to learn about a great new book on Endometriosis

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The Symptoms

Endometriosis can be a very puzzeling disease. Many women have no symptoms at all, where others suffer daily. Remember, these symptoms don't necessarily mean you have the disease...many symtoms mimic other disorders. The only way to know for sure is by having a laparoscopy. The following are common symptoms of Endometriosis:

  • lower back pain
  • pelvic pain
  • bowel discomfort
  • pain that generally comes 1 to 2 weeks before period
  • fatigue
  • painful urination during periods
Please remember that you may only suffer from one of those symptoms, none of them, or all of them. Personally I have only experienced 3 of them.

The Laparoscopy

If your doctor suspects that you may have endo, a "Lap" may be performed. This is minor surgery generally done on an outpatient basis. Most likely you will be put under a general anestetic. Then, the surgeon makes a tiny incision at the bellybutton, as well as one above the bikini line. The abdomen is then inflated with CO2 gas. Doing this allows the surgeon to view the entire area inside. Through the small incision at the bellybutton a tiny camera is inserted to view the organs.

After you have woken, the doctor will come and tell you what he/she has found. Im my case, the doctor came when I was still coming out of the anestetic, so I only remember bits and peices. You then will lay around until they feel you can go home. Someone will need to be with you, because you are not permitted to drive yourself home. A pillow is a can be held against the tender areas.

Everyone has a different recovery time. They say 2 to 3 days. It took me more like 4 until I was able to really walk around. The week after I was still walking differently because of the incisions. Your doctor may prescribe some pain killers. For me, it was Tylanol with Codine, and it helped. If you notice anything strange with respect to the incisions, be sure to call your doctor.


Unfortunatly there is not cure for Endometriosis. However, there are several ways that we can control it. Many doctors prefer to remove it surgically during the lap. However, many doctors have different opionions on this. If the endo is not threatening the reproductive organs, than may doctors will leave the endo there. This is because sometimes removing the diseased spots can cause more scar tissue.

Another option is medications that may supress the disease. One in particular is Lupron, which I am currently taking. This is an injection that is given once a month for 6 months. It stops the hormones that Endometriosis thrives on. However, in doing this the body thinks it is going into menopause. The symptoms menopausal women feel (hot flashes, iritability, dry skin, bone loss, etc.) are also felt by the Lupron patient. I have been on Lupron for one month and so far I have had dry skin, a few hot flashes and a bloody nose. Again, the bloody nose is from the dried out nasal passages. Make sure that you review all the effects of Lupron to make sure it is right for you. One bit of advice: I had many thoughts of not wanting to go on Lupron, but you have to remember.....a few months of annoyance outweighs letting the disease spread. This is how I look at it. BUT....if Lupron is not working by the 3rd shot, it probably isn't going to.

Many doctors say that pregnancy is a cure. This is a highly debated subject in the Gynocological field. They say that getting pregnat can stop the symptoms either temporarily or forever....every case is different. If you doctor tells you that you have a very mild case and you have little to no symptoms, they may do nothing. It all depends on the case. Every woman is different and feels te disease differently.

My Story

It all started my senior year in High School. I was on the school tennis team, and had just finished my match. My boyfriend Matt was driving me home when all of a sudden I got this horrible pain in my lower left side. I just figured that it was a pulled muscle. We were supposed to go out that night, so I gritted my teeth at the pain becauseI wanted to go out. It got to the point where I could no longer stand up. At this point my mom called my tennis coach to see if this could be a pulled muscle. I was on the floor rolled up in a ball screaming, and my coach said maybe they should take me to the hospital. We arrived at the ER and I remember asking to be knocked out so I didn't have to feel the pain. They did, and every now and then my mom would wake me up to say the doctor is here. They did a number of tests and concluded that I had an ovarian cyst that had ruptured. Other than that they did not know. I was referred to a gyn at that point.

To make a long story short, I went from doctor to doctor getting no results. They would tell me that I was normal and not to worry. I finally found a really caring doctor that said we would get to the bottom of this. I told him that I had done some research on my own and think that there is a possibility that I may have endometriosis. He said that it was a possibiliy, but in order to know for sure I would need surgery. So for about 6 months I was put on Oral contraceptives, thinking that if it was cycts the pain would stop. It didn't. It only got worse. Before we thought about surgery my doctor referred me to a Internist, to make sure I wasn't suffering from some digestive disorder. That doctor want to do a Sigmoidoscopy, a rather unpleasant test where a large tube is stuck up your backend. After much thought, my mom and I decided we were going the wrong route....I had no problems after eating. The doctor agreed and then we scheduled the surgery.

I had the surgery and it turned out that I did infact have endometriosis (A big told-ya-so to all the doctors who said I was fine!!) . However, it was not severe. Luckily it was in places that did not hinder my reproductive capabilities. It was located on my right ovarian fossa and on the left side of the ureterosacral ligament. The doctor showed me in my post-op appointment the pictures....I got to see what it looked like. He even showed me what scar tissue looks like. This is when the Endometriosis breaks down and bleeds every month, harming the normal tissure there. Scarring is the body's response to this.

So now what? I am on Lupron, and am handling it pretty well. I have seen some definate changes in myself, but I know in the long run it is for the better. My biggest complaint is my back pain, which has always given me a problem. That is what I am currently persuing. I am trying to figure out if the scarring on my ligament is causing the pain. The endo patches will swell, causeing pain in nearby areas. The back is near there. Updated 6/7/98: Things have taken a rather different course the past few weeks. I have changed doctors. I now go to Reproductive Endocronologist, who knows a ton on Endo. He has a very good reputation for being a great surgeon. He talked to my mom and I, and he discussed where the endo is and how it is effecting my life. We decided to go in surgically and remove the endo, and also possibly perform a LUNA (Laparoscopic Uterine Nerve Ablation) for the scarring on my ligament. He disagreed with my former doc that said that the scarring could not cause pain. He thinks some nerves may be involved, too. Lately it has been hard to walk without pain. So, I have an operative lap scheduled for August 11th.

My tips on how to deal with pain

I have learned that there are several things that help me get through a bad day. There are days where I feel great, and there are days where I want to crawl up in a ball and cry. When I feel bad or moody from the medication, here is what I do:

Thanks for visiting and do not hesitate to contact me with any comments or questions. I know how frustrating this can be, and remember that you are not alone. There are no stupid questions. Please feel free to e-mail me about anything. I enjoy the mail and will respond. I realize that I am not a doctor, but I have been through a lot with this and have read a lot, and hopefully could answer you question!!

To receive information or to join, please contact the Endometriosis Association: 8585 North 76th Place Milwaukee, WI 53223 (800) 992-3636
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