Past and Present Endometriosis Sufferers, I Need You!

I know the Lord only gives us what we can handle; I just wish he didn't trust me so much.
Mother Teresa

Oh, isn't that the truth! I have suffered from endometriosis, from here on known as endo., for about 6 years now. I didn't realize that it was the cause of all of my backaches, in the beginning, so it's just an estimate. I truly noticed something was not quite right about 4 months after going off the pill back in 2000. I kept feeling this throbbing, and it continued to get more painful each month. We were trying to have a baby, and as the months went by with no pregnancy, I started to worry that there was something wrong. That this pain was not normal. J. wanted me to call the doctor, but at that time, I just didn't like involving doctors and such. Well, J. left on a business trip to London, and I took a personal day off from work to go Christmas shopping with my mom.

As we were walking the mall, I cringed in pain. My pain at that time would just come out of no where and surprise the hell out of me. Being my mom and all, she noticed. Don't moms always notice what you don't want them to see? She asked questions, being a nurse and former endo. sufferer herself, she knew what to ask. When we got back to my house, she handed the phone to me, and told me to call the doctor or she would. Yah, I called the doctor. Who wants their mommy calling the doctor for them when they're 27 years old? Oh, yah, MEN! Cheap shot, I know.

My doctor, gyno., called back a few hours later. We discussed my pain, and he felt it was not endo., even though I gave him my family history, and did not feel there were any problems with us getting pregnant since it had 'only' been six months and I had regular periods. He said if Ibruprofen did not control my pain, then I could call him for something stronger. Let's 'wait and see', he said. That's what he always said. So I continued to deal with the pelvic pain, and the increasing back pain.

Two months later, I couldn't stand it. I called and did not get a return call until two days later, when I called after hours, and told the answering service I needed one of the doctors to call me back NOW! And no I'm not in labor damn it! The head doctor called me back, the one who delivered R. He told me I needed to call during business hours. I said I DID for TWO days and NO ONE called me back. I was pissed! He apologized and called in a prescription for Vicodin promptly. Love Dr. B! Two days later, J. and I purchased a new bedroom set, a Thomasville one I had been coveting but thought I should hold off on 'because I could be pregnant.' After 9 months, I just knew in my bones something was wrong. Well, the original doctor, the let's wait and see one, called back and apologized for not calling me back sooner. Oh, and all the the sudden he decided we needed to take action. Something could be wrong; I actually could have endo. Ya' think?! He wanted to do a lap. to make sure I had endo., sew me back up without removing the endo. and put me on Lupron. Uh, no.... Lupron was originally developed to treat prostrate cancer in men; it's a form of chemotherapy. In women, it's purpose is to put you in a chemical menopause. There are lots of not-so-pleasant- side-effects that actually sounded worse than the pain I was in. Plus, he wanted me to have the injection every month for six months, thus wasting valuable time, in my opinion. I did not see the benefit of being in menopause at the age of 28! Plus, I wanted a baby! So screw Lupron; it was time for a second opinion.

We got a referral to Northwestern Medical Center which has an acclaimed women's center. The doctor right away agreed with me. Lupron was not the best option for a woman trying to have a baby. I wanted to have a lap., and if the endo. was found, I wanted it removed. He said no. You only have surgery if the endo. is causing you unbearable pain to which you cannot function. He said let's do an HSG, dye put through tubes, to see if your tubes are open and if your uterus is of normal shape, etc. Had that test, and everything looked great. What to do next? My all time favorite drug, insert sarcasm here, Clomid with an HCG injection of Ovidrel! He wanted to do and IUI too, but I just wasn't ready. I thought it was all my fault anyway, so what difference would putting the sperm closer to the eggs do? (J.'s first semen analysis came back great). We did two Clomid cycles, and let's just say they didn't work, and they made me an emotional mess. Plus, Northwestern, although a very good hospital, just was too sterile, and driving in rush hour traffic just to have an ultrasound was wearing us down.

We ended up having a full work-up at our next clinic which was literally down the street from my work! Wouldn't that be convenient? Everything came back fine, although the pain was still there. They wanted to try another Clomid cycle. I said no. I said no to everything they suggested. I said I wanted a lap. to check for the endo. and to remove it. I was not doing any further fertility treatments until that was done. The doctor agreed. So the week of September 11th, 2001, I got to have my lap. And guess what? I had endometriosis. It took me a year and three doctors to finally get a lap.! They removed the endo., too. Then we did a Clomid IUI cycle in which I did get pregnant. I m/c at nine weeks, but after the m/c itself I felt no pain. I then went to Dr.S, my FAVORITE RE, as the previous clinic and I, well it's a long story. Let's just say it was best to leave. Dr. S did the same treatment and I got pregnant again on the first try, although we found out something special about hubby's sperm. Sometimes they stick together, and when they do, the RE can do a special wash to get them moving again. Nine months later S. was born at a whopping 8 pounds, 10 ounces, 22 inches long!

I was lucky in that I really didn't have any bad pain until 13 months after S. was born and after two Clomid cycles. This time the pain was more intense than ever! My RE told me the fertility drugs exacerbate endo. Lovely! I layed on the floor pretty much the whole day it came back. The next day was Thanksgiving. Just great! First holiday without my mom, too. When it rains, it pours.

The next two periods were unbearable. I would just cry from the pain. I took my Vicodin, but that just caused more pain. I had endo. that affected my bowels as well as my back and pelvic area. Fun, huh? So having a BM hurt, and taking a narcotic that constipates me just made it worse. It was a catch-22. We made an appt. with Dr.S.

Being a doctor who actually cares, he promised to get me into surgery to relieve the pain, BEFORE my next period. And he did. And he found more endo.; just stage two though. It was not affecting my ability to get pregnant he believed; all of the other doctors had said the same thing. He did hope that it would relieve my pain. Nope. Nada. Not happening. Just freakin' great.

We did two more cycles of injectables; we had done one before the surgery, and no pregnancies. My endo. just got so unbearable. I told Dr. S. we needed to take a break, and could he please prescribe some birth control pills for me so I could take them continuously so I would not get a period. He agreed. This was May, the Friday before Mother's Day. My brother had S. because I was on Vicodin and in too much pain to take care of him. Dr.S and I put me on the schedule for an August IVF. In the meantime, I also tried accupuncture. Now I like western medicine, but it wasn't working for me, so I decided to try accupuncture. It did help with my stress-level, and in combo. with the pill, it was helpful. Alone, it was not.

Well, this brings us to the IVF, which worked, and thus I was endo.-pain free. Blissful! R. was born, and until last Sunday, I had been pain-free. Last Sunday I was in so much pain, I slept for five hours and did not leave my bed. Monday, surprisingly was better, but Tuesday was the pits! With my endo. not only do I have pelvic pain, but also nausea. Think morning sickness. It's bad.

So I am scared now, guys. I only got 5 months without the endo. returning. I will not do another lap.; didn't help the pain last time anyway. Should I take the pill back to back, therefore no periods? I do have a prescription for it. I will not do Lupron. The other option my RE mentioned was a hysterectomy. My mom had one at 29, she always wanted more children, but the pain was too bad. Now I understand. I don't want a hysterectomy. Is there anything else I can do? This makes me very down, not depressed, just down. I finally got my depression under control, and now this. It makes me angry. Are there any more options? What should I do??? Can anyone else relate??? I know Sandi P. can. I just want to be out of pain. Is that too much to ask?