Welcome to my first attempt to start a blog!
My name is Melissa, I'm a full-time social worker holding a degree in psychology and social work, as well as attending many certificate courses throughout my studies.
In June of 2001, I finally learned that I had a disease that for years doctors attempted to insist was in my head; endometriosis. Since that time, I have been diagnosed with stage 1A uterine cancer, a fibroid (myomectomied during lap #2), Inflammatory Bowel Disease, Interstitial Cystitis, fibromyalgia, and the latest one, rheumatoid arthritis. While it is nice to have names to finally call all of my symptoms, it often leaves me wondering what's next on the horizion. Whatever does happen, I know that after all I have been through so far, I do have the strength to make it. Welcome to my journey of battle against multiple painful illnesses (the symbol is the light green ribbon for chronic pelvic pain awareness). I was 12 when it all started with my very first period. I had always been educated through the sexual education health classes that women have cramps, but these were anything but simple "cramps" and the suggested Midol for treatment didn't touch the pain. We were also told that we didn't ever bleed as much as we thought we did but meanwhile each month I would end up with lower and lower iron counts. Those were the first seeds of doubting my body's screams that were sown for me. So when my cycles started at the age of 12, I thought to myself that this was the "new normal".
My cycles would be 3 weeks in length or more, oftentimes with only a few hours to a maximum of a few days between the endo of one and the beginning of another. I had a really good relationship with my (now ex) family doctor at the time, who always was pleasant to me. I complained to her about the symptoms and was re-affirmed that everything was normal, and that we would just try me out on birth control pills to try to regulate the cycle. The pills were of no help. By this time I was starting to miss quite a bit of school, especially during my period time, and my friends were beginning to notice that I couldn't keep up with them due to my physical limitations. It's hard to feel like socializing when all you want to do is curl up in bed and cry.
One night, when I was 13, the pain hit especially hard, leaving me unable to speak or focus due to its severity. That was my first ER trip and it was December 23, 2002. The surgeon on-call decided that it was my appendix, and I was rushed through for my first of what would be several surgeries; an appendectomy. Looking back I believe that if the doctors had known/wanted to look for endo, they would have seen the abdominal area riddled with the cells at that time. My symptoms never changed since they started, only developing new ones and adding to the intensity of the older ones. I did not improve after the appendectomy, with the exception that the low-grade fever I was running disappeared.
The very next month I was into the ER again, which was to become a regular occurrence. They did the bloodwork, the ultrasound and not seeing anything, pumped me full of pain drugs and sent me home with orders to follow-up with my family doctor. My family doctor switched my birth control pills to a different brand. When that didn't work, she shortly became my ex-family doctor after saying to me "I could do an exploratory surgery on you but you wouldn't want to put your family through this would you?". In retrospect, perhaps if my family knew early on what I was going through it might have also saved them a lot of pain and frustration. Meanwhile, it was back and forth to the ER.
One of the paedetricians that I had start treating me did a whole bunch of testing on me to determine that "nothing" abnormal was happening. At 16, I was referred to my first of 3 gastro-intestinal specialists who did a colonoscopy. This showed a few pre-cancerous polyps that were removed during the procedure. That didn't fix the problem.
I went away to university for my psychology degree at the age of 19. I became pregnant much to my surprise, but had a late 2nd term miscarriage. The doctors on campus said that it was due to the umbilical cord attaching to a site of scar tissue within my uterus. As the baby grew, the placenta detached leading to the miscarriage. There was no explanation given except that perhaps the scar tissue was caused by an STD, even though I was checked for this and came out "clean". I sought treatment for the unending pain and heavy bleeding from the on-campus doctors throughout my degree.
Following the miscarraige, I was given a shot of Depo-Provera to help with the heavy bleeding and to regulate my cycles. No such luck. I will never do an injectable medication again. I experienced extreme nausea, dizziness, mood swings (pretty bad crying jags mixed with rage), convulsions, and migraines. The bleeding even increased to the point of needing to have a few blood transfusions. At one point the on-campus doctor had suggested having me checked for endometriosis and ordered a trans-vaginal ultrasound during this whole ordeal. I didn't know enough about endo at the time to know that you couldn't see it on any of the imgaging tests. It did show quite a bit of fluid in my peritoneal area, which is one of the indications of endo. In short, that one shot of Depo-Provera that is supposed to wear off in 3 months, took 8 months and ended with me requiring a D&C to stop the bleeding.
Around this time, I started having recurring urinary tract infections, almost monthly. More pain, and more time spent away from my classes. My grades suffered and I was put on academic probation at the end of my 2nd year.
In 2002, I developed what appeared to be another bladder infection which progressed to a kidney infection. Round after round of anti-biotics were taken between November and February 2003 when I got in to see the first of 3 urologists. The symptoms would slightly improve and then come back full throttle after a few days off the anti-biotics. A CT Scan was done which showed that my left kidney's blood supply had been cut off due to a growth. The urologist said that I needed a gyn to have a look, which I didn't understand at all at the time why a gyn would need to look at my kidney and which took another month to get into. In June 2003, I had my first lap.
I was working my first counselling job at the time, although by this point in the journey I had already taken a short-term leave to deal with the kidney issue, followed by a long-term leave when things didn't improve. I missed a lot of work during a critical restructuring time. When I came back, it felt like I should have been wearing a sweater with a bull's eye on it. It was a week before I was given my walking papers. I had overheard one of the directors of the organization saying "Melissa needs to grow up and realize that we all go through the same thing". If I had had the energy at this point I would have likely taken them to court.
Things did not improve following that first lap. In fact they may have gotten worse. I started hemorraging the day after, and after making sure at the ER that I was okay, I followed up with the gyn who did the surgery. He said to me "You have stage 4 endo, what would you like me to do about it?" That was just enough to set me off on a rampage to find someone who would help me. I was prescribed percocets, demerol and MS Contin for the pain. This wasn't helping all that much. One of the doctors that I saw at the ER prescribed me Danazol. I took this for 6 months in hopes that it would help me to have a child once I was done with it. The Danazol may have set off my fibromyalgia as I never had pain running throughout my entire body such as I developed after taking this medication. The Danazol did stop my periods but not the pain.
After no fewer than 7-8 early miscarriages, I finally managed to have my son. The 6-7 gyn specialists that I saw following that disastrous meeting with the first gyn, all suggested that the pregnancy would help to cure me. I heard such comments of "If you were married, I'd tell you to have a baby, but since you are not, how about a hysterectomy?" It wasn't as though it was my choice to control whether I could even get pregnant and carry to term in the first place! From the start of the pregnancy, I found out at 4 weeks along, I was put on bedrest. I went into early labor 3-4 times throughout the pregnancy, but managed to hold on to 41 weeks.
I was getting very depressed about going from doctor to doctor to try to find answers, so I dove into the research area myself. I learned more about the "endo diet" and read several nutritional books to educate myself on the role of nutrition in maintaining or creating illness. I read a lot on Oriental medicine, specifically different herbal approaches for symptom management. I did acupuncture and massage therapy treatments which provided only minimal assistance. I did feel better though when I followed the "endo diet" strictly.
I had found my first endo specialist during my pregnancy with my son. I had lap #2 three months after giving birth. It was a 6 hour surgery where they had to do a bowel resectioning due to the endo and adhesions. The endo specialists couldn't believe that I managed to conceive and carry to term with the endo, the fibroid (myomectomied) and the stage 1A uterine cancer that was found. I went back on Danazol for the next year as the uterine cancer required estrogen and Danazol was one of the "easier" medications to eliminate the estrogen. I had repeated D&C's to remove the cancer cells and help to build a new "healthy" endometrium.
Still the pain never stopped. In March 2005, I had lap #3 done by a different endo specialist. It was also an intensely long surgery, and he also did a LUNA (Laparoscopic Uterine Nerve Ablation) at the same time. Afterwards I tried different brands of birth control pills again, but it never worked. I tried the Nuva-Ring but started to swell in places I shouldn't be (I could barely get the thing out!), and also had heart palpitations and dizziness on it. I had a Mirena inserted for the past 3 years. The Mirena helped with the heavy bleeding once I stopped the initial bleeding of 6 months after having it inserted! But then my cycles started to get heavy again. My endo specialist put me on Arimidex and Micronor to go along with the Mirena. I did the three medication combo for one year, just stopping this past September.
It should also be noted that I have sought the help of pain management. My first two pain management doctors were not successful in treating my pain nor in treating me like a human being. The first doctor suggested that it was all in my head, despite having the endometriosis diagnosis at the time. The second pain doctor seemed eager to help me, however when I didn't respond to his treatment cocktail (fentanyl patches, percocets, NSAIDS, Neurontin - I can't take NSAIDs and I refused the percocets after I found that they weren't working either due to a tolerance issue), he had the nerve to tell me that my pain was related to being a single mom and not to any specific pain issue. My third pain specialist, the current one who I found all on my own, has been a lifesaver. He put me on Lyrica and Cesamet (Nabilone) with Sativex for breakthrough pain. Once the medications were in my system, my pain levels went from an average 8-9 down to a 4-5. He treated my trigger points with injections which minimized my migraines. I was able to function again and work my 10-16 hour days.
Throughout this journey I have seen many specialists and received many different diagnoses. I went to a gastro guy who did a colonoscopy, a rectosigmoidoscopy, an endoscopy, a barium enema and a CT with contrast all to come out and say "I think it's an Inflammatory Bowel Disease". Since I was awake during the procedures and saw the pictures on the video, I'd have to agree, it does look an awful lot like Crohn's, but they weren't able to determine which disease it actually is.
I have seen a rheumatologist who did a trigger point test placing specific amounts of pressure on different "known" painful parts, and determined that I have fibromyalgia. I recently say another rheumatologist who did a bone density scan and said "rheumatoid arthritis is what is causing the severe pain and popping out of joint feelings in your right hip".
I have seen several urologists and have had 3 cystoscopies. They found internal bladder endo, and Interstitial Cystitis, the painful breakdown of cells that line your bladder.
I have seen a nephrologist, there is no hope for the left kidney, but there is no point in removing it through an unnecessary surgery since it isn't causing me harm anymore.
I have seen a chiropractor, it didn't help. period. Not to mention it was expensive!
I have had mixed results with an acupuncturist. The first time i had a lot of relief, so much so that I cried. The second treatment was very painful and the third treatment just didn't do anything for me. I couldn't afford to keep going back with such mixed results.
I have seen a hematologist for my anemia, I was put on liquid iron which did help. My iron levels bounced back and I no longer need to be closely followed.
I have seen a massage therapist. This helped quite a bit with loosening up some of the adhesions.
This past August-September my boyfriend and I have decided that the time has come to try to conceive. I went off all my medications. So far, I have had another two early miscarriages. I don't know what the future will hold for me, but I am determined to not let this disease become "me". It is a part of who I am, no more and no less. I have accepted that it's here for a long time and have actively set out to find ways to help deal with it.
For the past 7 years I have moderated an endo support group with close to 1000 members. I provide my knowledge learned from experience and my research into the disease. I also try to help women to access the best specialists in their area who are knowledgeable about this disease, as well as supporting them emotionally on their journey. This is one small thing that I can do in order to cast a positive outlook on my negative experiences. This disease may have hurt me emotionally, socially and physically, but it has also provided me with the gift to help others. For that alone I will always be grateful. If you or a loved one has this illness, please consider joining.
