"KNOWLEDGE EMPOWERS YOU TO SHAPE THE SITUATION. IGNORANCE EMPOWERS THE SITUATION TO SHAPE YOU."
- IBHUBESI THE GREAT
Print out this pamphlet to help others understand what you are going through
This is designed for you to give to loved ones, friends or doctors. Once printed, you can then customize it to your symptoms, needs and story.
|
customizable_pamphlet_outside.pdf Size : 9467.976 Kb Type : pdf |
|
|
customizable_pamphlet_inside.pdf Size : 205.405 Kb Type : pdf |
Print out these medical id cards in case you have to go to the emergency room
This is designed for you to provide at emergency rooms, in case you wind up going alone and or you are having trouble speaking for yourself through pain etc. Once printed, you can add your name, DOB, address, blood type, emergency contact, when you were diagnosed with Endometriosis, what helps with the pain, allergies, medications. The size is 2.5" x 5", which can fit nicely in a long wallet or folded if needed to place in a wallet.
|
|
medical_id_cards.pdf Size : 28.456 Kb Type : pdf |
Always have a list of questions and symptoms to take to doctor visits
Going to a doctor visit can be overwhelming no matter if it is a new introduction with a doctor or if you are going to an established doctor. It is best to keep a list on hand either on a phone or by paper with any questions that arise at the spur of the moment. Add with the list of questions, a list of any symptoms you have been experiencing before meeting a new doctor or any new ones since your last visit with your established doctor. Whenever going to an established doctor, let them know any updates about any increases or decreases of symptoms that they are already aware about.
Ask your doctor if you can voice record the visit
Again, going to a doctor visit can be overwhelming no matter what. It can be overwhelming to hear everything a doctor is saying and also to comprehend everything in that moment especially if you are emotional about everything to begin with. Voice recording is a good idea because it helps you go back to a conversation and get a refresher or better understanding of what was said. Also, if someone else went with you as a support system to an appointment, it helps keep you both on the same track of what was said. Many times one person may hear one thing that the other one didn't. This will help you both be on the same page. This can also help you understand what you may need to ask next time.
You deserve to have a doctor that knows this disease well and can help you
Unfortunately, you may have to go to different doctors in order to get the help you need. A well trained doctor in this field is priceless. Many OBGYN doctors don't have a full understanding of Endometriosis and therefore finding one that specializes in this is best. Don't get discouraged, it may take some time to find the right fit. This I understand is easier said than done. Going from doctor to doctor or going on multiple doctor visits with one can be overwhelming. Don't lose hope, there will be someone out there that can help you. For a list of specialists go to the specialists page. If you cannot go to any of these specialists, keep trying to find someone in your area. Do some research and ask around. If you continue to go to doctors and still do not find anyone knowledgeable or understanding of your symptoms, at some point it may be beneficial to take a leap of faith and book at least a consultation with a well known specialist.
Questions to ask a specialist office when booking your first appointment
1. Do you offer over the phone consultations?
Some may offer this if they often get patients from all over the U.S. or world. If they do, they may have their own requirements before your consultation; which may include sending over all medical records and imaging. Ask what they require.
2. Are you in network with my insurance?
Many specialists are not 'in network' with insurance companies. However, they do bill your insurance and it is up to the insurance to pay you according to their out of network benefits. Do not be alarmed by this. See below for a description of understanding this process.
3. If not, how much will my first visit cost me?
Many front desk employees can either answer this question or ask someone for an estimate of how much a first time visit may be. Some may be able to give you an answer according to their office visit fees and usual tests that are done on a first visit.
4. What am I expected to bring to my first visit?
Some may require you to not only bring medical records, but also images from any past surgeries or visits.
Reasons why some offices are not 'in network' with insurances
Insurance can be confusing issue - and there may be significant misunderstandings about coverage and how it works with some offices. This information may help clarify how some offices deal with your coverage; however, should you ever have any questions at all, ask your office. They will be able to best explain their reasoning and how their process works.
If an office is an out of network provider with all insurance companies, this may not mean they do not accept insurance. This simply means, they may bill your insurance carrier at no cost to you, help with appeals, peer to peer reviews and provide other customary support, but their services will process as an out of network practice.
What does this mean? Those who do not have any out of network coverage are considered self-pay. They may file for coverage/reimbursement, assist you with appeals, provide you with letters of medical necessity as appropriate, and provide any other assistance required on a case by case basis in order to make your experience a smooth one and help you garner the maximum benefits from your coverage.
Why some may choose not to participate? Insurance companies limit provider decision-making and impact the quality of care you receive. To stay within carrier contracts, they would be required to reduce the quality of care offered to patients. Many do not want to compromise the quality of services they offer in order to stay 'in network' with insurance companies; participating as an out of network provider allows many to maintain and improve the quality of care their patients expect and are accustomed to - and deserve. Many believe your treatment decisions should remain between you and your physician, not a bureaucratic entity which does not understand the need for advanced, multidisciplinary expert care for endometriosis and pelvic pain. Sometimes seeing a specialist may mean that you are seeking care outside of your insurance company's preferred provider network; as such, they pay for less coverage of related services, versus going to an “In Network Provider” - who, while covered, may not be able to provide the focused and expert care for endometriosis that some specialists do.
Keep medical records on hand
It is important to have copies of your medical records at your disposal for many reasons.
1. If you change doctors or have multiple doctors working with you; you can't get copies of all your doctor records from one place, per HIPPA guidelines. A common misunderstanding is that if you have sent over all your medical records to one doctor from many prior offices; that you can get copies of each from this one office.
2. Some doctor offices may charge you for copies of their records. If so, it can be a good investment. You do not want to be at their disposal if you need records quickly and they have their own time limit when sending to other offices.
3. Having a copy of your records can be helpful in understanding your case better. It can be overwhelming to understand everything that a doctor goes over with you. However, having your own records can help you see diagnoses and notes about your case. With Endometriosis being such a complex disease, at times a diagnosis about a relative condition may be overlooked or not followed up on.
Websites to sign up for
This is a news and information website about the disease. They provide weekly emails and updates about present day research and findings, helpful tips, stories, social clips, etc.
When you sign up for SpeakENDO emails, tips, and resources, a donation will be made to the Endometriosis Foundation of America.
A Few Endometriosis organizations
An organization that strives to raise disease awareness, promote education, and increase research funding.
Endometriosis Foundation of America (EFA)
The Endometriosis Foundation of America (EFA) is a nonprofit organization working to raise endometriosis awareness, reduce the delay in diagnosis, and provide advocacy for the endometriosis community. To achieve these goals the EFA runs a thriving endometriosis education program (the ENPOWR Project), hosts annual conferences to engage the medical community, and funds landmark research.
The Endometriosis Research Center (ERC)
A nonprofit organization that strives to ensure recognition of the far-reaching impact that endometriosis continues to have on patients of all ages.
A nonprofit organization providing online and face-to-face support from other women coping with endometriosis.
HealthyWomen is the nation’s leading independent, nonprofit health information source for women, with a mission to educate and empower women to make informed health choices for themselves and their families.
Worldwide Endometriosis March (EndoMarch)
An organization that pursues to raise awareness, advocate and improve care for women with endometriosis. Every year on the last Saturday of March (Worldwide Endometriosis Day®), Worldwide EndoMarch calls to action to bring awareness for endometriosis.
A few Endometriosis communities
#EndoWarrior
A hashtag with a large following for endo sisters to connect, inform and inspire.
A social network dedicated to connecting women with endometriosis. Ask questions, share support and make lasting connections.
Follow us on .png?timestamp=1525292175179)
Copyright iunderstandendometriosis.com 2019
This website is intended as a resource/information site. All diagnoses must be given by a doctor. This website is not affiliated with, maintained, authorized, endorsed or sponsored by any of the mentioned websites, materials, doctors or any of its affiliates. This is an independent, unofficial site. All information contained on this site is unofficial and subject to update without notice.