neuropathic pain syndrome

Endometriosis and Adhesions

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In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world.  It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all.  I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results.  I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

Pelvic Inflammatory Disease Post Endometriosis Surgery

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Part three of my twenty-five year battle with endometriosis.

I went to a walk-in clinic to get a pap done for the bleeding that was happening during and after sexual intercourse. While waiting for the results during the week I was on the floor doubled over in the most intense pain I have ever felt in my entire life. I went to my general practitioner; I was white, slight fever and delirious. I was in so much pain. I told her I had a pap done, but the results were not back yet. I was told to call the walk-in for the results but they weren’t back in so they had to call the lab. In the end, I was told I had Pelvic Inflammatory Disease (PID).

None of it really sunk in right away because I was in so much pain I thought I was going to die. I was given an antibiotic but I was in so much pain I threw up the medication in the parking lot, picked it back up and put it back again. I was delirious, I couldn’t think straight and I really have no idea how I got home that day. All I knew was I was in pain. I got a phone call from the pharmacy three days later telling me that they had given me the wrong dosage and it should have been 3x what I was given; that explained why the pain never went away. The disease was pretty much wreaking havoc on all of my insides, everything that was fixed with my endometriosis surgery. I was devastated.

Years later, I realized that my doctor made the wrong choice in medicating me as she should have sent me straight to the hospital to put me on an IV drip because there were abscesses that burst and were now covering all of my insides. From the day of diagnoses of the PID, the pains never really left. I started to have problems having bowel movements, which I hadn’t had since before the surgery. I just couldn’t go and I felt that my bowel was twisted somehow so I went back to my surgeon. He looked at me like I was making up my pain and that there is no way I should have pain and should go home. I was so angry.

About 6 months later, I ended up in the ER for excruciating pain on my left side near my ovaries. At this time I swore it had to be my bowels but it wasn’t  My tube was enlarged and there was blood inside and all around it. They had no answers for me, just sent me home. I researched it. Either it would be tubular cancer, PID remnants or endometriosis in the tube. I knew it wasn’t cancer; it has to be either the PID, that was not treated properly almost 3 yrs later, or endometriosis.

During this time my pap came back with mild dysplasia twice so I was sent to my gynecologist to have a colposcopy. The test showed high grade lesions with no HPV. The pains persisted during sexual intercourse and so did the bleeding.

At the beginning of 2012, I went back to my surgeon again as pain during sex as well as bowel movements and urinary pain and he said there was fluid in the cul-de-sac and if it was endometriosis, a prescription of Lupron would resolve the issues. I went back three months later. I was too afraid to have sex during that time, but it made no difference, the doctor it isn’t endometriosis. “You have Neuropathic Pain Syndrome,” I was told. At that point I could have put my hands around his throat and strangled him. This surgeon had the worst bedside manner ever. He knew I was going to the Wasser Pain Management Clinic in Toronto and said that if the gynecologist there (he had trained her) agreed to the surgery he would do it. However, I already decided that I was never going back to him because every time I left his office, I cried for hours.

In July 2012, my gynecologist at Wasser agreed to do another surgery since I had only had one. She put me on various medications such as Gabapentin, Amitriptyline and Visanne. During this time I was calling her office to actually book the surgery and I didn’t get a hold of her for months later. Finally, on November 6th 2012, I made an appointment to book my surgery for this year or the beginning of next year.

To bring you up to date my husband and I got married in August 2012 at city hall and are going to Dominican for a symbolic ceremony. My dream is to be able to finally have sex with no pain with someone I truly want to spend the rest of my life with.

Until my surgery I continue to take the Marvelon and do weekly if not twice a week enemas as I can no longer have a bowel movement. I hope that whatever damage was done, any endometriosis that is there and any scar tissue that is obstructing my bowels, will be removed so I can carry on with the next chapter of my life.

 

My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.