Difficulty Urinating? Read My Endometriosis Story – by Nancy M.
My story with endometriosis begins 33 years ago when I was 16 years old. I got my first period right before freshman year of high school at the age of 14. I had mixed feelings as all of my friends had begun their periods already so I was happy to finally get mine and become a “woman”. But I remember being so upset at having to wear pads and feeling inconvenienced. If I only knew what lay ahead…
Soon my periods became very heavy, filled with clots and bleeding that even overnight pads (sometimes two at a time) could not contain. The cramps and abdominal pain were unbearable – constant gnawing pelvic pain was unescapable. Two years later at the age of 16, I knew something was wrong. This was not what other girls my age were experiencing every month. I had to drag myself to school and work and crouched down into the fetal position with my knees to my chest whenever possible to try to alleviate some pain. Taking Motrin and Tylenol until I vomited with my boyfriend (now my husband) holding my hair back over the toilet. My mother took me to her gynecologist who told me that “women have painful periods” and after telling him that I had been vomiting from all the Motrin I was taking – then handed me another prescription for Motrin! He did suggest birth control pills to help with symptoms but told my mother he did not recommend hormones for me at such a young age. So the suffering continued – every month the same thing. In my early 20s, I went to another GYN a female this time who told me I had fibroids and we would just watch them. She had no answer for my pain either – just continue with Motrin. Still looking for answers – I was on to yet another gynecologist – a recommendation from a nurse friend of my Mom. After explaining my symptoms to her and having an internal exam she said plainly – “I think you have Endometriosis” and explained that in order to make a definitive diagnosis we need to do a laparoscopy. Laparoscopy was done and diagnosis of endo was confirmed in 1993 at the age of 27 – eleven years after my quest for an answer began. I felt so relieved to know I had a reason for my pain and a name for my suffering. She did not remove any of the endo (as she was not trained in excision) but did place me on birth control pills to alleviate some symptoms which did help for a while. She also prescribed Anaprox (an NSAID) which is the only medication that helped me survive each month.
A few years later, hoping to have children, my husband and I began fertility treatments. Each month there was always a problem – a cyst on one of my ovaries, fluid in my tubes, uterine lining too thick (had a few D&Cs), poor egg quality etc. There was always some obstacle and super painful and heavy periods persisted. I even tried acupuncture. My infertility doctor suggested I see a specialist regarding my endometriosis and blocked fallopian tubes and referred me to Dr. Harry Reich (world renowned GYN laparoscopic surgeon and pioneer in the field of endometriosis) in NYC. Dr. Reich and I discussed surgery and it was scheduled. Just in time too since I had begun having bleeding and pain with bowel movements. So on that day in November 1999, I had a 9-hour excision surgery that began as laparoscopic and converted to open along with bowel resection by a Colorectal surgeon. Diagnosis and pathology – Stage 4 endo on my appendix, posterior vagina, cervix, cul-de-sac, rectum, sigmoid colon, ureters, and uterosacral ligaments. Dr. Reich asked my husband how I had even been having bowel movements since the endometriosis was strangling my bowel. The answer is extremely painfully and not easily! He said I was one of the most complicated cases he had ever seen since they had to open me up during surgery and usually he can do even difficult cases laparoscopically. I was blown away. I never knew how invasive this disease was until that day. Dr. Reich saved my life that day – thank God my bowel did not leak. I could have easily had bowel complications that could have led to peritonitis, colostomy, and other not good situations. After surgery, my periods were somewhat better and I was able to function during that time still taking the Anaprox for pain. I was so relieved that Dr. Reich was able to excise all that disease. I will forever be grateful to him and thank God for his knowledge, skill, and expertise.
After I healed we continued on our journey to have a family with fertility treatments – almost ten years of medications, artificial inseminations, injections, IVF without results – it was brutal. Then at my regular GYN appointment in 2007, a suspicious cyst was found on my left ovary. My doctor sent me to NYU Clinical Cancer Center to meet with a GYN/Oncologist – definitely the scariest day of my life. He said the cyst needed to come out and we scheduled laparoscopic surgery for the removal. After the surgery was complete – diagnosis was “chocolate cyst” or endometrioma (blood filled cyst) which was confirmed by pathology. Endometriosis strikes again! (But thank God no cancer!) However, the anesthesiology resident gave me too much pain medicine in the ambulatory surgery recovery room and they had to call a Code Blue – but that’s another story… thank God I got out of there alive!
The past 2 years or so my periods had been coming more infrequently – approximately every 2-3 months. I was actually not unhappy about this. I figured I was peri-menopausal and was finally being spared some of the pain that I had been accustomed to every single month. However, about a year ago (October 2014) I started having trouble with constipation. I blamed that on the fact that I’m a nurse working 12-hour shifts and do not have time to eat or drink much less time to go to the bathroom. So I went to my primary doctor and we agreed that I was probably dehydrated and I promised to drink more water and eat more fiber. Then I started to have lower back pain and some bloating along with constipation. I went back to my primary and she ordered an x-ray to rule out bowel obstruction. There was none and I promised to continue to drink more fluids and take Benefiber, Senekot, and Miralax. We attributed the lower back pain to constipation as well. Then a few months ago I was having trouble urinating. I was at work, felt the need to urinate urgently, but urine only dribbled out. I was really uncomfortable and now thinking I had a UTI (which I had never had before). So I called my doctor again and she ordered a urinalysis and culture and it came back negative for UTI. I continued to have intermittent difficulty urinating, constipation and lower back pain. I had a sneaking suspicion this may be endometriosis again. I called and scheduled an appointment with my GYN but the little voice inside me said that this wasn’t enough. I remembered Dr. Reich (since retired) telling me during one of my last appointments with him – “If you ever need to have surgery for your endometriosis again, because you are such a complicated case – the only doctor you should allow to treat you is Dr. Tamer Seckin”. And I never forgot that statement.
So I immediately went on the internet, found Dr. Seckin’s office, called and asked for an appointment ASAP. Lucy was so wonderful and accommodating and was able to fit me in Dr. Seckin’s schedule in July of this year.
Then this past June (2015) I came home from work one night thoroughly exhausted and woke up with a fever of 102.9 degrees. I went to see my primary (again) and she told me I had to go to the ER to get a fever work-up and rule out bowel perforation. I was terrified that if God forbid I needed surgery emergently the doctors at this hospital would not know how to properly treat my endo and I needed to wait to see Dr. Seckin. The CT scan showed no bowel perforation which was great but did show two large adnexal/ovarian cysts – 11 centimeters and 8 centimeters in size. ER doctor wanted me to see GYN at my local hospital (actually the one that I work in) but I insisted on waiting for my appointment in two weeks with Dr. Seckin. So I was prescribed antibiotics for a possible tubal infection by my primary MD to carry me through until I could see Dr. Seckin. Those 2 weeks were brutal – emotionally with worrying and physically with the excruciating abdominal pain, pain shooting down my leg, nausea and difficulty urinating.
I had an appointment with my GYN scheduled 2 days before my appointment with Dr. Seckin. My GYN did a sonogram and the cysts he told me together were 23 centimeters in width. He was unable to do a PAP smear as he was unable to visualize my cervix due to the cysts pushing up my uterus. When I told him I had an appointment with Dr. Seckin in 2 days he said, “That’s the man who needs to perform surgery on you! That’s the specialist whose hands you need to be in.”
So finally two days later I had my appointment with Dr. Seckin. I was excited, scared, nervous and mentally drained. I met Lucy and Kim first who made me and my husband feel welcome. Kim led us in to meet Dr. Seckin and I felt an immediate sense of calm come over me. This doctor, this man, this healer exuded such warmth and compassion and I felt an instant connection with him. I trusted him immediately. As we were speaking about my case, I felt he actually understood my pain. That is a powerful thing for a woman with endometriosis. He listened and then listened some more. He then examined me and put one hand on my abdomen and felt the cyst and said “you have a mass the size of a 6-month fetus in your abdomen” and then confirmed it via ultrasound. There was no question I needed surgery ASAP. Dr. Seckin ordered and MRI to be done and his staff made all the arrangements for me to have it done that very afternoon. In addition, Dr. Seckin began assembling his team of experts to assist with my care – a urologist Dr. Brodherson and a colorectal specialist Dr. Ansari – both of whom work closely with Dr. Seckin on patients with endometriosis. We agreed that the procedure would be open (laparotomy) instead of the laparoscopic approach he normally uses due to the size and location of the cyst. Surgery was scheduled for July 24, 2015 – nine days after my initial visit with him. He said I was to be the only surgery that day due to the complexity of my case. And a complex case it was. My surgery was approximately 9 hours long – the procedure was a total hysterectomy (extensive adenomyosis) with removal of both ovaries and fallopian tubes, left and right endometrioma removal, pelvic abscess removal, deep excision of invasive endometriosis, bilateral ureteral stent placement and left ureteral re-implantation. Vascular surgeon Dr. Pamoukian was called in to repair my iliac artery and vein as they adhered to the endometriomas. Thank God I did not have any significant bowel involvement this time around. And the infected endometrioma found buried deep in my pelvis was totally unexpected. Hence, my fever weeks before. I shudder to think what would have happened if a less experienced doctor had operated on me.
Wow – another major super-long operation! (My poor husband – sometimes I think it’s harder on him!) Dr. Seckin and Dr. Brodherson were wonderful in keeping my husband and my sisters updated during the long operation. Their explanations were concise and they happily answered any questions from my family. Dr. Seckin came in early the next morning to see me even though he was going away that weekend for a family event. He filled me in on all the details of what had happened during the operation. I was so appreciative and overwhelmed and all I wanted to do was hug him! He drove back to the city Sunday night and came straight to the hospital to check on me. What a wonderful man. I felt completely safe and competently cared for knowing Dr. Seckin was in charge of my treatment. I spent seven days at Lenox Hill Hospital and I can’t say enough about the care I received from the doctors, nurses, aides and ancillary staff. I went home with a foley catheter in place for 3 weeks, ureteral stents for 5 weeks and dressing changes for 7 weeks. But thank God I am feeling much better now. Abdominal pain, constipation and urinary symptoms are gone. I’m still recovering from the complicated surgery but am feeling stronger every day.
He is a brilliant, talented surgeon and compassionate man. Everyone I met along my journey with Dr. Seckin told me how much they respect and admire him – not only for his skills and talents but his passion and compassion as well. He is honest and forthright. He is a healer who saved my life. He is committed to providing the highest level of care to women with endometriosis. It is scary to think of where I would be right now if I had not had my surgery with him when I did.
One day while sitting in the waiting room for a follow-up appointment I saw a young woman probably around 18 years old. I just assumed she was there with her mother who was the patient. But then her name was called and the young woman went into the examination room. I couldn’t help but think of myself at that age. I thought about how different my life would be if I was diagnosed with endometriosis at that age. I might have children today. I might have been spared many years of pain and suffering. I might not have cried so many tears. But then I realized my struggles have made me the strong woman I am today. My hope for that young woman is that Dr. Seckin was able to preserve her fertility and spare her the pain and suffering that I experienced.
Thank you, Dr. Seckin, from the bottom of my heart for all that you do. I am forever grateful.
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