This is my story

I have had problems since my very first period. They have progressively gotten worse. They now include cramps that keep me in bed for about 2 days a month (if I'm lucky) and extreme pain in passing bowel movements as well as even attempting to pass gas, as well as pain separate from my cramps that occurs in the exact same spot each month on my left side starting at about mid-cycle, and not stopping until about week after my period starts. (do the math, that leaves me with about a week, maybe a week and half a month without pain on that side). I have horrendous mood swings and body aches off and on throughout the month. Intimate relations are less than fun these days, as the pain that occurs both from the movements involved and the hormone fluctuations are often unbearable. I do not yet know if I have endometriosis; however, I am scheduled to have a diagnostic lap in the next few months to get definitive answers (see bottom of page for update). I have been on birth control pills for years (often the first line of defense against a suspected case of endo) and still I have had increasing pain and discomfort.

It takes 75 mg (3 times the over the counter dosage) of Ketoprophen, mixed with two extra strength tylenol every 4 hours just to keep me able to function enough to walk to the bathroom. I am literally high on that much medication and yet, I can still feel the pain and even though I may physically be able to move a little, I am certainly not able to drive, or function co-herantly. I am coming up on graduation from college in a few years with a degree enabling me to teach. I constantly ask myself how I am supposed to function in a classroom with 25-30 children depending on me when I can barely function at all.

I have been to many doctors about this. For the first several years, I believed it was normal (especially after my mom disclosed the knowledge that there is a history of extremely painful periods in our family for many generations back, I assumed it was just a family thing, and I would have to learn to deal with it), however, something inside me kept screaming that this much pain and turmoil could not be normal. I finally found a doctor who would listen to me instead of blowing me off. She is the one who put me on the BCPs. She is my general practioner and is unable to diagnose such specific gynecological conditions like endo and fibroids or cysts or any other number of things. So she referred me to a GYN in the medical program I have. This man, despite a family history ranging from endo to fibroids to cysts, proceeded to inform me that this was 'all in my head' and that I had been brainwashed to expect problems with my periods and that if I learned to push myself harder, I would be able to break this pattern before passing it on to my own daughter. Needless to say, the man is full of shit (I will supply name on request so you may avoid him). For one thing, I never knew anyone in my family had problems until after I was already experiencing them myself, and for another, I have all the classic signs of endo, and there is a family history of it. This man is very lucky I didn't haul his butt up on malpractice charges. I returned to my GP and explained what had happened. She honored my request for a referral to my current GYN (who is also the GYN of another suffering family member). This doctor listened to me, did a thorough example (gyn#1 only did a partial pelvic, hardly anything that could be considered thorough), and immediately suggested a lap. That lap is scheduled in the next few months. In the mean time, I am very lucky enough to have the support of my family, my fiance (the idea for this page is his), my friends, and especially the really great gals in the newsgroup alt.support.endometriosis. I'd be lost with them. With their help, I have learned more about this disease than I ever thought possible, and have been supported through one of the worst eras in my lifetime. Thank you ladies! =) *HUGS*

UPDATE!!!

I had my lap on Oct 27, 1997. I was diagnosed with Stage I endo, and most of it was removed at the time of my surgery. My tubes and ovaries are, quite thankfully, clear, so my fertility is not at risk as this point in time. Most of my endo was concentrated on the left uterosacral ligament which houses a lot of nerves, hence, a lot of pain for only a small amount of endo. I am currently on Micronor as a treatment for this, and it makes my body believe it is pregnant so I currently dealing with those side effects of continual queasiness and exhaustion. However, I do believe, pregnancy or fake-preggers is much easier on the body than pseudo-menopause. I have had only 1 period since my surgery and I feel as though I've gone back in time about 8 years or so. 800 mg of Motrin actually took care of the pain...that hasn't been the case since I was in high school. I do not know what my second period will be like...I am praying it will be with even less problems than last month, but I know better than to really get my hopes up.

DOUBLE UPDATE (2/16/98)
I feel as though I have been given a second chance to live a full life. I have been blessed that my surgery appears to have worked very very very very very well. I am on Micronor now and have finally managed to shake the worst of the side effects (the things like nausea all the time and being exhausted, now I'm just a bit more tired and require naps much more often). The biggest change has been that my cramps are now usually able to be controlled by a few extra strength tylenol a day during my cramping days and I am actually able to function every day of the month now. I have had several periods as this medication has severely shorted my cycle to approximately 20 days instead of the 28 I was used to. I no longer have bowel problems during my periods, which is odd in some regards, because nothing was ever found on or around my bowel anyway. I am thrilled to be able to finally have what can be considered a "normal" period like a "normal" woman now. I'm ready to nominate my Dr. for sainthood at this point, I truly believe he is a miracle worker. I do not know how long my good fortune will last but I am doing my best to enjoy it to the fullest while I have it. I don't have a period without thanking God for my doctor and my luck in having my surgery done with his competent hands. I wish every endo sufferer to find relief like this from a good doctor.

(Oct 29, 1998)

Here I am, one year post op. I am still on the Micronor, and my cramps are still being taken care of with a combination of 800mg of Motrin and Extra strength tylenols as needed. I have begun having pain with ovulation on my left side though and pulling on my right side (suspected adhesions) when I have an extremely large bowel movement. Overall, I'm still doing better than I was over a year ago but not as well as I was just at the beginning of this year. I have discovered the joys of a new side effect (for me) from the micronor...weight gain. I've gained about 20 or so lbs since beginning the micronor. I guess it's the price one must pay in my case to be able to live life and continue on with my schooling. I am still thankful for my doctor. I finally have enough faith in my health overall that I am joining more organizations at school (initiated into Kappa Delta Pi this morning as a matter of fact) and getting more involved. Currently recovering from a bout of mono but overall, things are going well.
If you suffer, you are not alone....you do not have to go through this alone either, there are organizations and there are support groups. We welcome sufferers and their loved ones with open arms on the group. If you don't have your own access to a newsreader, go to DejaNews and go under medical/health, and then support groups. We're about a 1/3 of the way down the page. You are NOT alone!!!