Undiagnosed chronic pain finally becomes diagnosed as adhesions -- 27 years later!!!

From: Helen Dynda (olddad66@runestone.net)
Fri Jun 16 01:49:44 2000

Many of you have read my story; because someone entered my story on several of the search engines on the Internet; but as of January 2000, my story is no longer on the Internet...so I decided to share it here.

February 1970 I had a laparotomy. The fifth day after surgery, I started to feel the return of constant pain. Weeks after my surgery, my surgeon decided that maybe I had endometriosis; so I was put on Enovid and Combid ( hormone therapy ).

November 1970 I developed deep thrombophlebitis ( a blood clot ) in my left leg. As a result of having developed thrombophlebitis, I could no longer use birth control medication.

July 1972 I literally had to beg my gynecologist for a hysterectomy!! He insisted on talking to my husband! He finally agreed to do the surgery...but that was the end of our doctor/patient relationship!!

September 1975 I finally found a doctor who took a special interest in trying to help me...and the best news was that he lived in my home town!!! This special doctor knew how to help me find relief from the severe pain, which had dominated my life since my surgery in 1970.

In the mid 1970's the Mind-Body Connection became a reality!! My wonderful doctor was well versed regarding this important medical development. He spent many unpaid hours trying to help me understand such terms as: endorphins, serotonin, neurotransmitters, etc. and what they meant.

It was then that I learned for the very first time that a human brain contains its own natural morphine. Stress depletes this natural morphine. Since I had lived with extreme pain for so many years, I not only had lost my ablility to concentrate...but my brain's natural morphine had become depleted.

The very first medication this doctor prescribed for me was amitriptyline ( generic of Elavil ). He started me at the lowest dose ( 25mgs ), which was gradually increased until I was taking 150mgs. Amitriptyline is the VERY FIRST medication to gave me relief from pain!!!!! I was not pain-free; but I was able to at least function.

Amitriptyline has been recognized to be a drug which helps to raise a person's endorphin ( natural morphine )level - and thus helps to relieve pain. This drug enabled me to finally be able to sleep through the night - without being awakened by pain!!!!!

In 1982 I had four different kinds of pain blocks done on four consecutive days at the Mayo Clinic in Rochester. None of the pain blocks offered me any relief from pain!!!!

There is no way that I can paint a clear picture of what my life has been like since the laparotomy in 1970; and I have no desire to even want to remember those years. They have been the worst years of my life!

>From the early 1970's I kept searching for a clue which would lead me to
a solution to my complicated pain problem. I kept searching for the right doctor. I searched for information which might offer me a clue,

It was my constant search for information that helped me learn the truth. In 1996 I requested all of my medical and surgical records. "Hypochondriac" was one word that caught my eye. As I read my reports, I remembered that I had been advised by several Mayo Clinic doctors to seek treatment at a mental health center.

But there was one word on my 1970 laparotomy report which really caught my eye...the word, "endometriosis"!! I had heard about the Endometriosis Association ( EA ) at some time in the early 1990's. In order to be able to order any of their educational materials, I had to become a member of the Endometriosis Association...and I did.

I ordered every book, every video, several audio tapes, and many pamphlets!! And I searched for clues in everything I had purchased; but I was still uncertain if endometriosis could be my problem. I managed to find one clue which gave me hope and helped me to know what I needed to do next. I read that the ONLY WAY that endometriosis can be diagnosed is via a diagnostic laparoscopy. I had never been offered a diagnostic laparoscopy!!!

Next I needed to find a doctor who would believe me and who would suggest a diagnostic laparoscopy as the next step. I had been so disappointed with so many doctors so many times before! I turned to the Endometriosis Association for help. As a member of the EA, I was able to request a list of endometriosis specialists from my state. There were only two specialists listed - so I had no difficulty making a choice.

In May 1997 ( 27 years after my first surgery ) I met this endometriosis specialist for the very first time. I was well prepared, I knew my situation well, and I felt very confident that now I might finally be heard. We talked for 45 minutes non-stop; and then he said: "Your symptoms sound more like adhesions than endometriosis." He then told me that the only way to know for sure would be a diagnostic laparoscopy. He did not even examine me...but arranged for me to have Same Day Surgery. I couldn't believe how well this appointment went!!

The surgeon had a very difficult time in trying to insert the laparoscope!! He discovered that he had to lyse ( cut ) adhesions before he could actually examine my pelvic cavity. What was the final diagnosis? I did not have endometriosis...but I had massive adhesions, which had attached my omentum to my abdominal wall - the entire length of the scar from my 1970 laparotomy and four inches across. Because of the complexity of my adhesiolysis, I was kept in the hospital overnight on pain medications and antibiotics.

I felt absolutely wonderful...for 10 days!! That was in August 1997!! In 30 plus years I have had exactly 15 days that I can honestly say that I really felt good.

I will be much wiser before I consider my next adhesiolysis. I have learned that a person, who suffers from adhesions, will have the very best chance for a successful adhesiolysis by choosing a surgeon, who is very skilled and very experienced in performing difficult adhesion surgeries...completely done laparoscopically!!!!!

Currently, I have two surgeons in mind...and I just might take that step soon!!

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