I have been battling endometriosis since age 16 but was not correctly diagnosed til age 18. I had several doctors first tell me I was either crazy and making up the symptoms or I just needed to get tougher to deal with my periods. Well, 20 years have passed now, and I have had 10 surgeries, all related to this condition. I had two miscarriages and even had a doctor tell me at age 24 I could never have a child, and he was ready to do a hysterectomy then. Fortunately, I didn’t take his advice and moved on to another doctor, and in 2004, I gave birth to my daughter.
I have had to have a hysterectomy since then, and prior to that surgery, I had already had many laparoscopies to remove endometriosis, along with ovarian cysts and a mass on my tube. Additionally, in the past two years, I have had two more surgeries and one ovary removed, due to the continual build-up of this ongoing disease that relentlessly grows upon healthy tissue inside of of me. What has been even more frustrating is that I recently found out my past two surgeries had removed hardly any endometrial tissue at all, when I was given the impression that there was all of this damaged tissue being removed to improve the quality of my life.
But I come to a positive note after all of this. I was just recently connected with the most incredible physician that I have ever met in the OB/GYN field, and mind you, I have seen 7 doctors for treatment. She is an endometriosis specialist, and she spent 90 minutes with me on my first visit. I learned more from her in that first visit than I have learned in these past 20 years. She not only validated everything I have been going through, but explained so many other symptoms I have been having as well. I do have to have more surgery unfortunately, and I face my next one next month, but I feel that I am in the best hands I have ever been in, in terms of a physician. She has been honest to tell me that this hopefully will be my last procedure, but she cannot promise, given that the disease has grown to these large bundles behind my belly button and down through my rectum.
I have learned to live with this illness quite well, I think, and I am grateful that it has never threatened my life in any way and am blessed for that. It is painful at times, absolutely, and it affects several other functions of my body given where the disease has grown, and I am hopeful that someday soon I will have relief from those. I felt it was important to tell my story here for anyone else who has had to live with this condition and who has gone through the frustration of doctors not knowing much about it and trying to make the patient feel in the wrong or crazy for the symptoms they speak of and live with. I hope this will give other women empowerment to seek the best possible care for this condition and make sure that their voice is heard. Don’t give up!
Dana Neil, age 38
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.