Personal Endo Stories
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Penny's Story
Ever since I can remember, I have always had painful periods. The cramps left me lying in a fetal position, popping pills like they were candy & miserable. The bleeding was another story that lasted at an average of
seven very long days.
My periods started around age 11 and seemed to increase in severity every year. By the time I was in high school it was almost unbearable. I hated going to school during the week of my period and I dreaded it with every ounce of my being. I could plainly see that my friends were not suffering like I was!!
My family would not take me to be checked out because they said that this was a woman’s lot in life. They said that my mother and aunts suffered from
the same things when they were my age and they were now fine (of course my mom & my aunt ended up with hysterectomies). They told me that once I had my first child my periods would no longer be like that. They lied!
I had my first daughter at age 18. When she was about 6 months old, it started again. I brought this to the attention of my Ob/Gyn. He said that we would just watch and see if it continued & put me on B/C pills. These did
help for about a year and then…it all went back to where it was before. I told my doctor again and he seemed to blow me off. It took me another two years to get with my second daughter. After she was born it started up again, but this time with a vengeance. When I told my doctor about it this time he asked me my symptoms, which included: killer cramps, heavy bleeding, severe fatigue & pelvic pain. He did a pelvic exam, told me everything was
fine and the problem was in my head and tried to talk me into taking Prozac.
When I refused, he told me to lower the amount of stress in my life and walked out.I decided that I was done with doctors. For the next two years, I silently suffered in pain. The symptoms increased by leaps and bounds and I began having severe pains in my right side around my ovary area. Everyday I dreaded getting out of bed. I was physically, emotionally and mentally exhausted. I was always in a bad mood because I hurt so badly.I knew that I had to go to a doctor, but was afraid that he would tell me that I had cancer.
I decided to go to a very well known Gyn in my hometown. I explained everything to him, just as I had my first doctor…..only he did not try to convince me that it was in my head. He did a pelvic exam, ultrasound and told me that he wanted to do a simple surgical procedure called a
laparoscopy. It was scheduled and I was sent home with a self-help guide on dealing with pelvic pain.
The day of my surgery came and I was told that I would be having a lap, D&C & a hysteroscopy. When I awoke from the surgery the nurse came in and handed me these pictures taken during the surgery. My hubby told me that the doctor had found endometriosis and had removed it all. I never in a million years, could have imagined how much the word “ENDOMETRIOSIS” would have on my life! I left the hospital thinking that my ordeal was over. Over the next couple of weeks I read as much on the disease as I could and came to the harsh reality that I had an incurable, chronic disease. There was no getting rid of it!!
When I went in for my post-op appt. the doctor told me that he had found Stage I endo & that he had cured me. (I knew from my research that he was wrong) He also told me that if I wanted a third child to do it within the next year,
because I would soon be sterile. He smiled as he walked out the door and said that the next time I had a flare up he would do a hysterectomy and he left. As I left his office I grabbed a copy of my operative report because I knew hat I would not be going back to him……EVER.
Two months to the day of my lap the pain was back and worse than ever. I knew that I could not let it go, as it would continue to grow and cause even more problems. I sought the help of an endometriosis specialist in a eighboring state. He looked at my pictures, my operative report listened to my story and told me that I probably also have adenomyosis or “endometriosis interna”. We talked and I decided to go on a drug called Danazol (Danocrine) for a couple of months. The drug worked very well and helped in relieving my pain. I knew that I could not take the drug forever and I knew that there was only one cure for adenomyosis. I discussed it with my husband and we discussed it with the doctor. We knew what would be the next step be. On January 8, 2002, at the age of 24 I had a Laparoscopic Assisted Vaginal Hysterectomy (LAVH/RSO) with appendectomy. I had my uterus,
cervix, both tubes, appendix & right ovary removed, as they were all infested and scarred by the endo. The doctor had confirmed that I have Stage III endo and also found a fibroid. He said that there were large, active endo lesions
in there that the second doctor had left in there on purpose so that I would have to keep returning for treatment. He also said that there is no way that he could have missed that fibroid and that it was too large for it to have just ome up….besides the Danazol would have helped all of hat. I knew that there were risks involved with the surgery and I also knew that there was a good chance that the endo would be back.
When I was 4 months post-op the pain returned and we were in the process of relocating. I am now almost 7 months post-op and have an appt. with a doctor in a couple of weeks. I know that this is just another chapter
in my book of dealing with endometriosis, but I wouldn’t have it any other way. I thank the Lord every day for my disease. Why?? It is not cancer/it will not kill me, it has brought me & my hubby closer than ever, it has brought
many wonderful women from all over the world into my life and it has enabled me to make a difference in the lives of endo victims every where. I have a web page (www.endocenterparkersburg.20fr.com), an email support system for victims (working_4_endo@hotmail.com) a support group and two MSN Communities that I manage.
Every aspect of my life has been affected by this disease, I have lost my most precious organs , I have suffered for many years, I have been through hormones and surgeries….but all in all I still believe that there are reasons for everything that we go through. I may not live to see a cure for this disease in my lifetime, but everything that I have gone through has not been in vain. I am paving the way for the next generation of endo sufferers, for my daughters and their daughters. I no longer suffer in silence….Endo may win the battle, but I WILL WIN THE WAR!!
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