Adhesions – the Pain, Suffering and Frustration

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Roxie Fiste
My personal struggles with adhesions began shortly after a partial hysterectomy at age 33. Our daughter was just a toddler but there would be no more babies now that my uterus, riddled with growing tumors, had been removed.  For over a year I had fought with my body, suffering with double menstrual cycles, pain, even having contractions as my body thought I was pregnant again!  It took five pregnancy tests to prove to the doctors that I didn’t have a tube pregnancy going on.  The first surgeon I had tried to save my uterus but the fibroids had grown inside as well as through its walls.  He carefully cleaned off the endometriosis gathered around my ovaries believing they would function normally after surgery.  It took about six weeks, but my energy levels eventually picked up to the point I actually felt good again.

My husband gave me a membership to a nearby health center as my healing process was ending. Being a full time mother and housewife did keep me very busy so working out gave me a couple of hours a week to clear my mind. Don’t get me wrong, I loved being a new mom, watching our daughter grow and change each day, but those few hours were greatly energizing. Eventually, I was even able to return to a little stargazing in late evenings after our daughter would go to bed. Life seemed to actually return to normal.

Six months later something began happening to the Me inside. Outwardly, I was unchanged, but emotionally and mentally I was becoming lost.  The feelings were strange, frightening, as the real me seemed to drift off into the distance. It was after a rigorous workout that I felt something flopping around in my lower abdomen. It wasn’t painful until my GYN did a check which nearly caused me to pass out. Another surgery was scheduled which resulted in my left ovary, the size of a small orange, being removed. The surgeon reassured me that once I healed everything would be “normal” again.  He had cleaned up my right ovary and removed some tiny adhesions. Life improved for about a month. For six months after that I began experiencing mood shifts, panic attacks, night sweats and two episodes of convulsions. My GP sent me to see a specialist to see if anything could be done for my mental state. This new doctor immediately set up an appointment with my GYN again. Something was physically wrong with me which was causing a disruption in my emotional and mental states.  Surgery was once again scheduled. This time the doctor found endometriosis, adhesions and a dead ovary.  After its removal I was placed on estrogen which completely righted the mental and emotional states. My family thought I was home free!

While working out about seven months after my previous surgery, I felt a burning sensation deep in my lower back. I tried various exercises, massage, whatever would help my back improve. Nothing worked. It became a rather tedious nightmare just trying to do laundry, chase a toddler, cook a meal, etc.!  How frustrating to have the deep, fiery pain continue to spread from my back to all the way around my lower abdomen!  Someone we visited suggested it might be adhesions. She suggested that I go back to my GYN. By the time this fourth surgery came I could barely stand up straight.  It had gotten hard to breathe and I could no longer sing in the choir.  My surgeon found so many adhesions a laser could not be used. It took him 45 minutes to remove the enormous number of adhesions using a scalpel. He was worn out and frustrated by the way my body was producing them so before closing me up he placed special mesh along my abdominal wall, while trying to protect my intestines. To complete his attempt he added small implants of cortisone pellets into the areas covered by the mesh.  Upon waking after this particular surgery I was quite nauseous.  Multiple muscle spasms hit within hours of coming out of the anesthesia as well. The nurses were quite good at keeping me set up with Phenergan and piroxicam! One stopped the nausea and the other stopped the muscle spasms. It was not my normal way of dealing with pain – I preferred to take a couple of Tylenol 3’s, not injections of strong meds. Thankfully, after a couple of days in the hospital I went back to taking tablets instead of shots. My breathing returned to normal as well as the ability to take deep breaths to sing within a few days of surgery. This time my husband and I fully believed my life would get back on track.

For about a year I remained free of adhesions, going about normal activities, mommyhood, spontaneous adventures with my family.  Within weeks of the anniversary of that last surgery the ring of fire returned. This is what my GYN called the ring of adhesions rapidly growing in my body. Over the next ten years I would have six more surgeries for adhesions. There were years I barely weighed 84 lbs before surgery. Other times I weighed as much as 105 lbs – my body just couldn’t adjust to the physical intrusions of the scar tissue.

In 2002 I had what would be my very last surgery for adhesions.  There were a couple of complications which made healing more challenging – a hematoma in my abdomen caused searing pain and a near double surgery, (thankfully a specialist released me saying the hematoma would resolve on its own), and a serious bout with Epstein-Barr virus slowed healing to a snail’s pace.  It took over a year to recover from the EBV.  Looking back it is quite clear that my immune system was worn down, plus my vitamin D3 levels were very low, most likely from all of the surgeries I had starting, with my first surgery mid-pregnancy through 2002. Twelve altogether – not a world record, but definitely ENOUGH!

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9 Comments

  1. Yes, Joey, my adhesions resolved in 2002 – typo on the 2001 date (sorry)
    Lisa Strawmier – I returned to my Gyn dr each time – he was also a surgeon. No one told me about nutrition being an important part of healing/prevention. Discovered this on my own. Seems some people are more prone to adhesions, like me. Hope you get relief quickly!

  2. What dr to you go to (GYN or go straight to a surgeon and what is the best procedure for this problem ?

  3. Yes, my adhesion issues have been resolved as of 2001.. It seems that 10,000 IU daily of D3 has truly helped! Thanks for your inquiry.

  4. Well Roxie, At last I get the whole (?) story. You never mentioned the first surgery of the twisted nodule on your bowel. I mostly knew of each surgery, but not the reason behind them. Just the first one, the cesarian section, the uterus removal, the first ovary and the second ovary, plus one adhesion surgery after another. If I remember correctly, it was a surgery every year for quite a while.

  5. Roxie, i am very sorry to know about your suffering. While you dont clearly mention whether your surgeries were laparoscopic or open procedures, i gather they were open surgeries. The chances of adhesions with laparoscopic surgery is much less than open. However, it requires a lot of skill to successfully deal with endometriosis laparoscopically.You are absolutely right in saying that nutritional supplementation would have certainly reduced your suffering. It is also important for you to evaluate your hormones & take advice from a doctor who has knowledge about working with BIHT. A lot of women with endometriosis are deficient in Progesterone.

  6. I really have no idea why the adhesions stopped growing (only when I had my ears pierced in 2004 did they reapppear and tried to grow over the posts), except there aren’t many areas or organs left to grow on?! I did a lot of exercise, changed my diet (organic, extra vitamin D3 and B-12, with some Iodoral tabs for a while. REGARDLESS, My surgeon is very happy..

  7. Wow! 12 surgeries is definitely more than enough. I am sorry for what you have gone through. Do you know what made the difference when you had surgery in 2002? Why did the adhesions resolve after that surgery and not the others?

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