WHAT WOULD I KNOW?
Do you have a choice? Fortunately I did and for most of you there will be choices. Some though will not have the type of choice that provides a skilled surgeon but will hopefully be able to present knowledge published from credible researchers to help their situation. Most likely as a result of the apparent skill shortage around the globe of surgeons who operate on Endometriosis using the excision procedure and thanks to research tools like the internet there will be women worldwide who are likely to be at the moment more educated about this disease than the actual General Practitioner or Specialist available to them.
In my experience as I am sure other women will relate, you could say the cart is still before the horse! It is estimated that 10 percent of women around the world suffer from this disease. That is a lot of women suffering. Not just a little bit of suffering - it is reported in America as the third highest reason why women are admitted to the hospital gynaecological unit. It is a huge benefit when you have this disease to be able to choose who treats you because although this disease is prevalent, there is a limited amount of professionals who are skilled to manage Endometriosis.
To make this process of choosing your medical team easier an important factor is to research Endometriosis, using the information from organisations like those listed on my previous blog ‘Plenty of Questions,Very Few Direct Answers’. With efforts being made today towards research and building awareness about Endometriosis I do believe there will be a time when all women are directed towards education about this disease by a general practitioner or gynaecologist. But the current environment meant I first spent years struggling with no diagnosis. When it became extremely bad after having my first surgery I had to find a general practitioner and gynaecologist who had the best skills to help me. They were not easy to find out there and I was not referred by the medical profession to them. I had to ask my friends, and one thing lead to another. I would imagine in a perfect world, as a starting point in the future all general practitioners would be educated enough to suspect endometriosis and in doing so refer patients directly to a specialized gynaecologist who would seek a confirmed diagnosis. They would also be responsible for encouraging women, due to the complexity of the disease, to spend the time educating themselves with knowledge, as I was encouraged by my skilled specialist.
In addition to researching Endometriosis another important factor to this process is to document symptoms and health issues you have experienced throughout your life. Be as accurate as possible. Write everything down that has hindered you physically including descriptions such as types of pain and nausea, frequency of illness, bowel movements, feeling awful and so forth. If you are writing your history after having researched the disease, try not to only list the issues you have had that fit your research. In other words, make sure you really do write everything down. You maybe surprised to find out you do not know the significance of what your history has been until you fully understand the effect that Endometriosis can have on a person.
The average time to get a diagnosis continues to be reported as 7-10 years. Having knowledge about Endometriosis and the historical information you gather about yourself can be invaluable, minimizing the time it takes to get a laparoscopy underway to confirm a diagnosis, or in deciding what treatment to administer for managing the disease.
When most of us think of a medical team we typically think of a general practitioner, specialist, surgeon or nurse. But I would recommend that with Endometriosis you consider expanding your medical team to include your support person or support group. The reason for this is that although they are not medically qualified in anyway they do need to be the type of person comfortable enough to administer heavy medication when you are at home too sick to administer it without help, have the stomach to clear away vomit buckets, help you bathe, take care of you after a surgery, or feed you appropriate foods. They have to have the patience to understand your needs when you are sick and heavily medicated. They may also be your ears at appointments when you are overwhelmed from the information being explained to you or perhaps you are distracted by something like the disappointment that treatment has not worked in the way everyone had hoped. This person or these people can be as important as glue holding your life together.
One of the ideal positions for you to be in choosing your medical team is to have some form of medical insurance and income protection. In New Zealand we have a public health service and income assistance provided by the government for those with no type of insurance. The issue with this is delays in treatment because of waiting times, limited choices regarding skilled specialists, and the type of income that struggles to pay the basic essentials in comparison.
I have often been asked what would be the best possible outcome to aim for when choosing a medical team….
1. For those who require surgery, a gynaecologist who is a skilled and experienced surgeon using the excision procedure.
2. A gynaecologist who understands and can communicate about all things knowing that surgery although effective by itself is not the only method required to manage Endometriosis. E.g. medicines, diet, exercise.
3. A gynaecologist that accesses the latest research information about endometriosis and where possible in relation to your treatment can link you directly to the source for the purpose of researching further.
4. A General Practitioner who is open to discussion. Due to the unpredictable nature of the disease they must be able to help you make decisions regarding diagnosis, symptoms, specialist reports and treatments.
5. A General Practitioner who will not hesitate to refer you to a gynaecologist when more help is required due to your symptoms.
6. A hospital that specializes in gynaecological issues such as Endometriosis.
7. For those who experience chronic pain over a prolonged period access to a Chronic Pain Psychologist or if possible a Psychologist who specializes in working with women who have Endometriosis. For women at the severe end of Endometriosis this person could be invaluable and highly beneficial to how well you manage pain. Often pain management medicines will take away acute pain but leave a dull pain that is still exhausting and nauseas. As I have experienced, and for those who have been diagnosed as severe, there are long drawn out periods of time when you are constantly in some kind of pain 24/7 day after day. Coping strategies or ways to mentally distract yourself when you are not able to move out off your bed or off the couch can go a long way to allowing you to cope and avoid feeling tormented.
8. A supporter in the form of someone who is able to help you when you are debilitated with such symptoms like pain, nausea or vomiting. Someone who can bring you healthy food when at your worst even though your intake will be limited. As well as possibly clear away vomit, help you bathe, keep your home secure, run your business and any other matters that require attention. This may be more than one person at any time.
9. Someone who can come with you to your medical appointments to take notes and be another pair of ears. When I am occasionally by myself, I take a recording device and inform the person I am recording.
10. Someone who can help you prepare before a surgery and someone who can help assist you for up to six weeks after a surgery. This may also be more than one person at any time.
11. When speaking to other women who have endometriosis they have like me, sourced out other specialized treatment from the likes of either a physio - pelvic floor specialist, osteopath, chiropractic, dietitian, deep body massage or acupuncturist. In my situation I prefer using a chiropractic that has played a significant role in keeping my neck and back aligned after recovering from surgeries. All can have a place in your management or recovery.
Endometriosis can be much easier for you to manage when you are clear about who your medical team is, what strengths or weaknesses it may have, and how well it all works together to achieve the best outcomes. Once I got to this position I felt I could at least sleep with both eyes closed, and life became a little bit less of a battle.
Author: Jodee Watts
Upcoming Blogs: My Endometriosis Story
Attitude versus aggressive disease. Pelvic pain & nausea. Diet & exercise. Medication, treatments and mind control. Gone Rampant. Surgery & recovery. Moving forward – debilitated or not. Relationships, family & friends.
Previous Blogs: My endometriosis Story
The agony of how I found out. What is Endometriosis Plentyof questions, very few direct answers
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