This letter is written with a twofold purpose: one, to engage the insurance/medical professionals who deal with claims and make determinations on what level of care is appropriate or what procedures are recommended or necessary; and two, as a testament of the journey we have shared with our daughter on her experience with the little understood world of Endometriosis. Please feel free to share this with anyone who may benefit from our experience.
It has been my experience throughout the past several years that the diagnosis and recommended treatment of Endometriosis among medical professionals is both lacking in empathy and understanding. Many doctors who might otherwise flag a patient early as having symptoms which might include Endometriosis as a possible diagnosis are all too quick to discount symptoms as normal cramping, to which they ascribe the pain to be unfounded, a manifestation of the patient’s psyche, suggesting either ibuprofen or a psychiatrist; or conveying a possible diagnosis to be IBS, reflux or some other gastrological problem, never mentioning the possibility of Endometriosis or in rare instances acknowledging the possibility but quickly dismissing it as unlikely. The problem with this approach is it takes the validity of the patient’s pain and turns it into something she must constantly defend herself against to others. When everyone in her support network is dismissive of her claims, it leads to self-doubt and a feeling of “what’s wrong with me”; withdrawal and self-injury might be predictable outcomes as the patient attempts to garner some form of control over her pain.
The word Endometriosis had never been a part of my vocabulary; I had never heard of it as a diagnosis nor as a possible affliction neither within my own family nor in the course of normal conversation. When my adolescent daughter was experiencing periods that lasted up to two weeks and she was complaining of significant abdominal pain, enough at times to request to stay home from school, I had relied upon the information supplied by her pediatrician – that cramping was normal, and she should accept it as a normal part of being a female and to take ibuprofen for the pain. She was told repeatedly that she needed to stop complaining, to suck it up, and that she was a drama queen, that her pain couldn’t be that bad.
Toward her senior year in high school she began having migraines; there was no family history of that, so we were looking for a possible reason for the onset and came up with one possibility: she had previously taken a medication, minocycline, prescribed by a dermatologist for acne (migraines were listed as one of the possible side effects). She had already completed her treatment with the drug, but it provided a possible explanation and the important thing was trying to stop them (even so, Endometriosis could have been on someone’s radar as now there were three precursors: longer than normal periods, moderate to severe cramping and migraines). After multiple doctor visits, to include psychiatrists, ENT specialists, opticians, ophthalmologists and a neurologist, followed by a weekend trip to the hospital, a narcotic was administered to break the migraine cycle. The one good thing about the migraines was that people around her could better understand and moreover believe the level of her pain – at least as it concerned the migraines.
At some point during high school she secretly began cutting, small cuts on her inner thigh where they wouldn’t be seen. It went on for quite some time before she confessed. She couldn’t explain why, and we couldn’t imagine a reason – the predominant theme of our household was to allow our three daughters to experience childhood, to allow them to explore new interests – like gymnastics, dance, soccer, softball and bowling – where they were encouraged and supported but not pressured. She was an outstanding athlete, earning an athletic scholarship to a division 1 school and twice earning top honors at the state level. Again, a missed opportunity for a medical professional to view the collective and recognize a fourth sign that could point towards Endometriosis. Just try to imagine what it must be like for an adolescent who is under constant siege by her body, who has seen countless doctors from multiple disciplines who have ruled out all perceived possible diagnoses, with the one exception – that it’s all in her head. Even I am guilty of offending her reality, and I am the one who most understands how pain can be real yet not understood by others around you, as I have lived with Rheumatoid Arthritis for over thirty-five years. I had offered that to her on numerous occasions, encouraging her to push through the pain. Looking back on her journey it makes complete sense that she would cut herself in an attempt to validate to herself that she could indeed push through pain.
We had mixed feelings supporting her decision to go thirteen hundred miles away to attend college, and were disheartened to learn that she again cut herself on the weekend before classes began (requiring several stitches to her shin). Her coach sent her home for the semester and she continued counselling sessions – even family sessions – with no reason coming to light for the cutting and the doctor giving her approval so she could return to school. It was during this time she saw her first in-network OB/GYN, who said she just had irregular periods and prescribed birth control (for the 2-week long periods). She returned to school, and on spring break saw the same OB/GYN who then changed her birth control prescription (still experiencing long periods) and had an ultrasound done to investigate the abdominal pain. After the spring semester, she returned home and again saw the same OB/GYN, who gave her the ultrasound results: follicular cysts on her left ovary (stating all women get cysts), additionally stating all women get cramps (in reference to the chronic abdominal pain). Her next visit was with a second in-network doctor in the same practice who gave her new birth control options (to attempt to alleviate some pain). That doctor was unavailable on the next visit, so my daughter saw a mid-wife in the practice who listed possible reasons for the pain (last on the list was Endometriosis, and he said it was rare and that it was unlikely she had it).
Back at college, my daughter worked part-time at the University Daycare, where she met a woman who had Endometriosis. The woman (her boss) suggested she should go to her OB/GYN and told her the symptoms she was experiencing sounded a lot like Endo. There followed several trips to the ER over several weeks for severe pelvic pain, multiple ultrasounds, CT scans, urine analyses and prescriptions for Hydrocodone/Tylenol #3/Motrin along with no founded diagnosis or that “it was probably an ovarian cyst that ruptured,” given morphine, and was discharged.
Eventually a laparoscopic laser surgery was done by the OB/GYN recommended to her by her colleague, (her 3rd in-network OB/GYN and first surgery for Endometriosis) and during that surgery it was confirmed that she had Endometriosis. She felt relief from that surgery for two weeks, but the constant right side abdominal pain was back within four weeks. Within six weeks of the surgery she had such severe pain she passed out and as a result got a mild concussion. She was prescribed Hydrocodone/Vicodin/Tramadol/Tylenol #3 for three months (also requiring anti-nausea medication due to reactions from these drugs), followed by a three-month Depo Provera shot (which induced a forty-day period). Monthly Lupron injections followed (putting her in menopause), providing very limited relief; but she could only stay on it for six months due to the increased danger of osteoporosis.
One year after surgery the ER visits began again, and due to already having the diagnosis of Endometriosis, they would simply administer morphine and prescribe hydrocodone. This led to a second surgery, less than one and one-half years after the first, where again Endometriosis was found and removed through Laparoscopic laser surgery. Around this time, she found an Endometriosis support group, where she found many other women going through similar journeys with little relief from the medical community, some with extreme stories of even having hysterectomies and still living with Endometriosis pain. The pain remained on her right side, less at first but increasing in severity within three weeks. She was given monthly Lupron injections for six months, but she began having trouble with nausea and vomiting. Eventually the pain returned, at much higher levels, even worse than after the first surgery prompting her return home.
We decided she needed to see someone with a better understanding of Endometriosis and how best to treat it. Searching for an Endometriosis specialist yielded no results, and variations of the search led to a well-regarded area hospital and a new, and 4th, in-network OB/GYN who could treat Endometriosis. There she was told it was impossible to have pain 24/7, that she needed to relax and have a glass of wine. The next, and 5th in-network OB/GYN she saw told her some people shouldn’t have surgery and thought it was IBS or bladder issues. She then saw a Gastroenterologist and had an endoscopy and a colonoscopy, followed by a visit to a Urologist in order to rule out interstitial cystitis.
The next (and 6th) in-network OB/GYN actually knew a lot about Endometriosis, listened to her and switched the birth control and had ultrasounds and CT scans done. She also provided much-needed understanding and offered some possible aids, like the Endometriosis diet (which provided no relief). A woman on the support website suggested my daughter should check out a book on Endometriosis, written by Dr. Tamer Seckin, titled, “The Doctor Will See You Now”. We bought the book, and this was the turning point in my daughter’s life. She began her third round of Lupron injections, this time getting two 3-month shots with a third laparoscopic laser surgery done between the two injections. The pain was back within four weeks of surgery, this time the pain was shooting from the ovary down to the pelvic area along with a sharp pain on the right ovary when she moved her right leg. This was followed by constant nausea and vomiting. She was then prescribed physical therapy where they performed pelvic floor exercises. Once again, she had an episode where she passed out from intense pain, this time enduring a black eye and three displaced teeth.
Hopeful after reading his book, we went for a consult with Dr. Seckin, Endometriosis Specialist, a surgeon who has over 10,000 hours in the operating room with Endometriosis patients. His knowledge and understanding of what causes the pain in Endometriosis patients gave us great promise; after meeting with him we knew this was our best chance for the most desirable outcome. Additionally, during our subsequent visits to his office prior to surgery, we met several other patients at various stages of care, all whom regarded Dr. Seckin as the best doctor for Endometriosis care.
In an attempt to appease our insurance company, who believes there exist local in-network doctors who can perform the same surgery offered by Dr. Seckin, she saw a 7th OB/GYN doctor to see if he offered the deep excision surgery. He stated there are no doctors in our area who can do the procedure done by Dr. Seckin, offering instead to do a Pre-sacral Neurectomy, a procedure which would cut out the nerve endings in the abdomen (doesn’t sound to me like that follows the “do no harm” philosophy of the Hippocratic Oath).
My daughter had her surgery, performed by Dr. Seckin, about two and one-half weeks ago. The night of her surgery she was cleared to eat solid foods – including McNuggets. She was up walking the next day (a little), and walked for four hours the second day after surgery (very slowly, only going 1.8 miles). I could see the success of the surgery the morning after, as it was the biggest and brightest I have seen my daughter’s eyes in five plus years. She could feel the difference; there was some pain from the surgery, but it was totally different than the pain she had felt after the previous three surgeries. In the ten months since her third surgery, she had lost 40 pounds from the incessant nausea and vomiting from acid reflux. She had issues with both constipation and diarrhea. Since her surgery with Dr. Seckin, she has had no dietary restrictions and experienced no issues either with her bowels nor stomach. Her overall presence has dramatically changed, going from a moody, melancholy, somewhat distant person back to the funny, engaging, happy daughter I had so long ago lost. Dr. Seckin, thank you. From the bottom of my heart, thank you. What you do needs to be studied, to be a model for other professionals who sincerely want to help their patients with Endometriosis.
There needs to be a dialog among medical professionals, especially OB/GYNs, about better recognition and treatment options. The warning signs that many women with Endometriosis share may include longer than normal periods, migraines (in the early stages of Endo) and severe menstrual cramping; I add to this list a possible sign, as was in our case, cutting or self-injury; consider these symptoms as you diagnose your patients and perhaps Endometriosis can be addressed much earlier, sparing patients years of unnecessary suffering and relieving insurers from the expense of repetitive tests and surgeries. As I became more enlightened about the disease, I began talking about my daughter’s experiences and was utterly shocked at the number of women who have Endometriosis or know someone who has it and have given up, resigned to their truth that no doctor could help them. The medical community needs to pay attention and hear the pleas of those who have so long been suffering – current accepted treatment options do little to actually help those with Endometriosis, often leaving endometrial tissue behind along with more scar tissue which only adds to the pain, leading to more surgeries; listen to a new voice and follow a better, less destructive path.
While there is no outright cure, there is a proven technique which can significantly reduce the patient’s level of pain and improve her overall chance at living a normal life, with an eye towards preserving the opportunity for motherhood. Dr. Seckin is a world-renowned expert in treating advanced, deeply infiltrating Endometriosis with multiple organ involvement. He cares deeply for the women he treats and has dedicated his life to finding better treatment options for the millions of women who are not heard. He also teaches other doctors successful endometriosis operation techniques. He has made numerous contributions to the Endometriosis Foundation of America Advocacy & Educational Programs as well as given many lectures, including presentations and videos. He is a resource that should be better utilized.
One thankful father