Abdominal adhesions began wreaking havoc in my life back in 2004 after having surgery to remove a giant cyst. Some, myself included wanted to blame the type of surgery performed for the adhesions, being that prior to having laparoscopic I had two C-sections without developing adhesions. But in my case it wasn’t the type of surgery, it was what was found. Even after two abdominal surgeries, no adhesions were found, instead my surgeon discovered a giant ovarian cyst that had adhered itself to my left fallopian tube, left ovary, uterus, bladder, and left side wall. Also adhered to my side wall was my left fallopian tube. It was the scarring from having the cyst and fallopian tube removed from my side wall that set off this storm of adhesions that would forever change my life.
Within months after this surgery the pain and pulling that I had felt on my left side had returned. I tracked the pain cycle as I did before. Because it was the same, my doctor and I began discussing my options, one of those being a hysterectomy. Because I had a toddler and a teenager at home, I decided to put the surgery off until summer when I wouldn’t have to worry about running the kids from one activity to the next. My husband and I even planned our two week summer vacation for the day after school let out so I could have surgery after and spend the rest of the summer break recovering. What we didn’t plan on was my having to have an emergency appendectomy while on vacation in another state. My hysterectomy was postponed to give my body time to heal before going under the knife AGAIN. Summer break was over by the time I had recovered from my appendectomy and the pain caused by my adhesions had reached a new level. In addition to the pulling pain my uterus began contracting. To be honest I wouldn’t have minded being in “labor” if I were actually giving birth, because at least I would know that it would end. But there was no end in sight and the pain continued to worsen.
Realizing that I could not wait to schedule my surgery around my son’s school schedule I agreed to have it done right away. This I do not regret. However I do regret the type of hysterectomy that was performed and would never advise anyone else to have it. That however is another story that I will share later. During my hysterectomy my surgeon discovered multiple cysts and a spider web of adhesions. They showed me pictures of the scarring on my side wall that adhesions had created. The multiple scarring locations explained the ripping sensations that I would feel and why I would experience relief now and again.
Sadly the adhesions returned with a vengeance a few months later. To make things worse my original surgeon and approximately 20 more refused to deal with the problem. The original surgeon stated that he took care of the issue and that my pain must be unrelated. The other surgeons insisted that it was in my head or blamed it on my Fibromyalgia. It took two years to find a surgeon who believed that adhesions were the cause and was willing to help. A few admitted that it could have been adhesions but refused to help me. By this time I was experiencing severe diarrhea, nausea, and was vomiting. The cause of this was discovered in surgery. My bowels were being strangled by the adhesions. But this wasn’t the only thing that was discovered. This surgeon revealed that the surgeon who performed my hysterectomy had left a mess. A large portion of my left fallopian tube had been left behind. It was infected, covered in adhesions, and was also embedded into my side wall.
My hopes of this being the end was shattered when my pain returned just a few short weeks after surgery. The one difference was that main pain site was lower than before. The cause was ovarian remnants that had embedded themselves into my side wall lining and my cervix which my original surgeon and I had agreed to keep during my hysterectomy. A few months later surgery was performed to remove my cervix and lining. Once again I felt hopeful of living a life with only pain from psoriatic arthritis and fibromyalgia. Silly me……
While this surgery relieved me from the side pain, it ended up increasing my pelvic pain. During the surgery my surgeon sliced a set of nerves when removing my cervix. This left me with permanent nerve damage in my pelvis and left leg. My surgeon also used sutures that I had told him NOT to use and ended up having a reaction. Because he used the same sutures internally I had to endure yet another surgery to have them removed.
Since then I have learned to work around and just deal with the pain that my adhesions cause. Approximately two years after my final surgery and at least twice a year my adhesions attack my bowels and I have to deal with the diarrhea, nausea, and vomiting. Most spells only last a few weeks, however this year each spell has lasted for over a month. It is getting worse and I know the time to do something is coming near. I have been lucky that with exercise and riding fast rides at Disneyland, I have been able to loosen my adhesions without surgery for close to six years. Unfortunately nothing I do seems to be helping at this point in time. Thankfully the ripping from my lining, mainly my side wall and area near my belly button, has been in full swing for the past two weeks putting an end to the nausea, vomiting, and diarrhea that I had been experiencing for the month prior. The bad part about this is that without those symptoms and no longer having my bowels under attack, all medical tests performed show nothing wrong. While I am used to never having what is wrong with me show up in testing and only being discovered in surgery, my new doctors are not. So we continue to play the test this and that game until they agree to surgery or are forced to as my physical condition plummets during one of these episodes.
I am not a fan of surgery. I have had ten in my life time and have no desire to every have another, but losing months to nausea, vomiting, and diarrhea isn’t ideal either. Unlike my past surgeries, this time I would have no fantasies of living without abdominal pain afterwards. I know the adhesions will return and I have survived the past six years with a pain that is just as intense as it used to be. What I do expect is to gain a few years of not having my bowels attacked. I can live with pain. I have known nothing but a life of physical pain for over 15 years, but I can’t deal with the nausea, vomiting, and diarrhea. On the other hand, I hesitate to push my doctors to perform surgery because of all the errors that have been made in prior surgeries. The errors mentioned in this post are only a few that I have to live with. To be honest I am terrified that the next error will be worse than the rest or fatal. I also realize that I need to get past this fear, because if my spells continue to increase in length and severity they could also cause permanent damage or kill me. I feel like I am living a case of damned if I do, damned if I don’t.
I would love to hear from others that suffer from abdominal adhesions. How do you deal with them? What is the longest amount of time that experienced relief and why? Is there any hope for people like us?
I am currently seeking relief from the extreme pain that my adhesions are causing. Just like my past experiences, I must go through a bunch of tests to prove that they are the cause of my digestive issues. Follow my quest by clicking here.
Wishing all my spoonie friends a day filled with smiles and gentle hugs!