Diagnosed late in life with endometriosis

Lori was not diagnosed with endometriosis until late in life and surgery discovered she had complex adhesions but she is holding off having a hysterectomy


This is Lori’s story …..


Since I was a teen I've experienced painful menstruation. I started my period when I was 11. I went to the doctor for it at age 15 and was given a prescription for a mild narcotic. Now I'm 52 years old and was just diagnosed with endometriosis 4 weeks ago tomorrow. I had classic symptoms.


I even developed Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, an irritable bladder, adult allergies, adult asthma, and more.


I come from a family with autoimmune issues. I had three of the best docs in my large city over the past 20 years and my complaints about pain weren't dismissed, but were definitely misinterpreted. I believe that they were often misinterpreted because I had not experienced infertility.


I had my three children when I was very young and had no problems getting pregnant. My younger sister also has severe endometriosis and is childless. That should have been a big clue.  About 6 months ago, at a routine GYN visit, my new doctor suggested that I have an ultrasound. She didn't expect to find anything, but she wanted to cover her bases.


There was a medium sized complex cyst on my right ovary (just 3 cm), but my uterus was normal. She suggested that we do another ultrasound in a couple of months. In the mean time I was having right sided hip pain that I had grown sick of. I had an MRI of the hip and they also saw the cyst.


It had grown to 4.5 cm. My second ultrasound a few weeks later said it was fairly stable but smaller at 3.5 cm. A third described it as septated and still about the same size, however a smaller cyst on my left ovary had grown a bit and had a new sister cyst (both presumed follicular).

During those months I was even more fatigued than usual for the week before and during my period. My pain reached a new height during an 11 day road trip.


By the end I couldn't even drive the car. I finally consulted to have a laparoscopy to remove the larger cyst and figure out what was going on in my pelvis, and a CA-125 was run (it was negative).


When I came out of surgery, my doctor, who is not a particularly empathetic person, said, "You must be a very brave lady."


I was anxious to hear her report, but then disappointed with hearing it. She was unable to remove the cysts, which were all endometriomas, due to the extensive endometriosis that was found behind my uterus.


She was encouraged when she entered the abdomen because everything looked great until she looked behind the uterus. My ovaries and tubes are adhered to the posterior side with complex adhesions. She couldn't lift the ovary out of them to do the removal. Her only option was to stop the procedure or to switch to a laparotomy and she felt the risk was too great because she believed it would have taken hours to sort it all out.


Her recommendation for me is a complete hysterectomy. I don't agree with her, but I will hear her out tomorrow at my post-op appointment. In the mean time I started on natural progesterone daily to try to oppose my estrogen (which is already so low that I'm near menopause estrogen levels).


I have more questions than answers and am considering getting a second opinion from Dr. David Redwine in Bend, Oregon. I'd like to see the diseased tissue removed, the adhesions removed, and the right ovary (if not both) preserved. I'd like to keep my uterus as I believe it's the key to pelvic support for my future. 

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