I believe my Endo began when I developed some kind of weird pelvic infection that was so painful I couldn't even stand up. I went to two different doctors who couldn't figure out what it was, so they put me on some major antibiotics and I was off work for a month.

Up to that point I had always been very healthy and not had problems with periods. After the infection, my periods became more painful and progressively got worse every month. My husband and I were also trying to get pregnant during this time.

I went to another doctor presenting my symptoms of painful periods with very heavy bleeding, and infertility issues. They had me try all kinds of anti-inflammatory drugs, and do the basal temperature charts for a few months, they also tested my husband's sperm count (which was normal).

After two and a half years, my periods became unbearable and I also started having pain on other days of the month. At that point, the doctor mentioned the word "endometriosis" and that I might have this disease. She sent me to a gynecologist for a laparascopy. He found Endo everywhere.. rectum, bladder, bowels, tubes, ovaries, etc. There was so much on the ovaries that they were adhered to the walls! He lasered "what he could", but left Endo on the bowel and bladder because those areas were too dangerous to touch.

He suggested I go on Lupron for 6 months to "dry up" any remaining Endo. I went through the hot flashes, night sweats, headaches, weight gain, bloating, and severe mood swings. . . I had virtually no sleep during this treatment, but I thought it would all be worth it because it would make the Endo go away. I was horrified when I got my first period after the treatment was over, and it was the worst one ever! Little did I know, the nightmare was just beginning...

I went back to my doctor very depressed that this had happened. She put me on an antidepressant, and gave me some stronger pain medication.

This is when I really started to doubt my sanity. . . I could not understand why I couldn't just get rid of this problem, the doctors acted like the Endo should be gone because of their treatments and since I kept feeling worse, I thought I was making myself sick!

My husband and I kept trying to get pregnant even though intercourse was becoming quite painful, but had no luck. My Endo symptoms continued to get worse, I started having flu like symptoms every day; nausea, vomiting, body aches, fatigue, plus all of the chronic pain in the pelvic region along with sharp shooting pains and had extreme pain in my flanks and lower back. I even started getting pain down into my legs; and my vagina felt like someone was sticking needles into it.

This disease had affected every part of our life; my career was in jeopardy because of all the days I had to call in sick, our finances were terrible because of all my missed income at work (we ended up having to file bankruptcy), our future plans of having children were apparently gone, our social life was non-existent because I was always too sick to do anything, our marriage was sorely tested every day because intercourse was so painful and chronic pain makes for some serious mood swings which cause lots of trifling arguments, and just the general insanity caused by not understanding that I had a disease and the doctors' attitudes that I should feel better - I really thought I was nuts!

I changed HMO's to see if I could get some better help. My new doctor was immediately sympathetic and suggested birth control pills to see if that would help with the pain.. the problems only got worse. She sent me to another gynecologist who performed another laparascopy, again removing Endo everywhere except for the bowel and bladder. He told me that I could try the Lupron again or I could opt for a hysterectomy/bilateral oopherectomy which was the only "cure" for Endo. At that point I had been sick and in pain every day for a little over two years. My husband and I did much talking and crying trying to make this decision. We sought second opinions from two other doctors who basically said the same thing. We ended up deciding on doing the hyst because we had been trying to conceive for over 6 years with no luck, and we thought that this would give me my health back and we could enjoy our life together again.

I had the hyst at the age of 30, and the doctor put me on estrogen replacement therapy in the hospital. I had asked him why I should do that since estrogen is supposed to make Endo grow. He said that even if there was any Endo left, that I would be taking such a small amount of estrogen that it wouldn't affect it, he told me that he removed "all" of the Endo.

From about the 4th week until the 10th week after the surgery I felt great except for the recovery from the incision, I thought this nightmare was finally behind me and I could get on with my life.. then I started getting Endo symptoms again. I didn't want to believe it at first, I thought maybe I was just doing too much too soon after the surgery.

I went on yet another medical leave, but my symptoms just got worse. I went back to the gynecologist and told him I thought the Endo was back. He said that the hyst had cured the Endo, acting like I was some kind of hysterical female.

Needless to say, I found a different doctor! The new doctor did think the Endo was back, but he did not want to do a laparascopy. Instead, he put me on progesterone along with the estrogen, but I continued to get worse. He sent me to a pain clinic, but they told me there was nothing they could do for Endo pain. My husband and I were severely depressed by this point and fantasized about suicide often as it seemed there was no hope. It was then that the miracle happened. . . I found the Endometriosis Association through a coworker and found out there had been a support group in town all along! I immediately called Wendy Parent and bought the Endometriosis Sourcebook from her.

I went to a new doctor who performed a laparascopy and removed ALL of the Endo and also scar tissue/adhesions. The doctor also put me on Zoladex after the surgery to insure that if there was any microscopic Endo remaining, that this treatment should remove it. It was hard to go through that again (similar effects to Lupron), but I felt much more confident that this would work, as I knew 100% more about this disease.

I have been Endo symptom free since around 1993!  I believe the combination of having a truly experienced surgeon perform the laparascopy, changing my diet, changing my lifestyle and adding herb and vitamin supplements finally helped me to get Endo under control. I do not say that it is "cured", because when I started taking estrogen again after the Zoladex treatments, I started getting Endo "twinges" again. I went back to the doctor and we decided I should go off from the estrogen, and just take synthetic progesterone (5 mg). The Endo symptoms disappeared, but of course I got all of the menopausal symptoms.. much easier to deal with than Endo!

Even though I had gotten my physical health back, my husband and I still had quite a long road to travel mentally and spiritually to get our lives back on track. We were both still suffering with depression caused from all of the years dealing with this disease, and it took a tremendous amount of effort from both of us to get out of it and get on with our life. We have made major changes and feel that we are starting life over again. The experience with the disease has actually become a catalyst for us to get our lives on track and do what we want to do with it.. we both quit jobs that we hated, moved to a new and warmer climate, and are pursuing careers that interest us.

I am now studying to be a master herbalist, work at an herb store, and am starting a small herb business of my own. I feel an intense need to help others with health problems who are not getting anywhere with western medicine. I and am heavily involved with a computer endometriosis support group, trying to offer support and information so that other women do not have to go through what I did. I never thought I would say this, but Endo has been a blessing in a way in that it made me a much stronger person and made me appreciate life! You never know what's going to happen in life, so you better do what you want with it while you can!

It also gave me many new friends through the Grand Rapids support group, and I want to thank Wendy (and Mary for keeping it all going after Wendy!) and everyone for the wonderful support that you gave to me by being there for me.. you saved my life!

I have learned a great deal about natural remedies. I am now off of the synthetic progesterone and use natural progesterone cream along with some other herb supplements and this has worked great to diminish all of the menopausal symptoms along with keeping Endo under control. More on this and many other herbs that help with Endo and related health problems in my upcoming newsletter column...l look forward to keeping in touch with everyone this way!

Good luck and good health to all!