Australia Resources
Links:
- Endometriosis Australia: https://www.endometriosisaustralia.org/
- Endometriosis Australia Facebook Group: https://www.facebook.com/groups/endoaustraliadiscussion/?ref=share
UK Resources
Links for those in the UK:
- Pelvic Physiotherapy: http://www.pelvicphysiotherapy.com/list-of-therapists/
- Accredited Endometriosis Centres: https://www.bsge.org.uk/centre/
Notes:
- Someone shared this information with us about having surgery in the UK and what to expect afterwards: After surgery, you may not be told about your surgery findings at discharge. When you are discharged, you will often be told you are no longer under “their care” as an inpatient, which means the day unit’s care. The doctor should send a referral to outpatient appointments for a post-operative appointment to be made with either that doctor or a member of that team. It is at this outpatient post-operative appointment that you will find out about your surgical findings. You should, under NHS rules, have a post-op appointment within 8 weeks; however, if you haven’t heard about an appointment after 6 weeks, then you might want to ring appointments. They should send a letter to your GP stating that you will be seen 8-12 weeks post-operatively. If you have trouble getting an appointment, then your GP should be able to help you with this.
Giving Women Control of their Healthcare: from the APPG
Report Launch: Informed Choice? Giving women control of their healthcare
March 27, 2017 The first report from the All Party Parliamentary Group on Women’s Health (WHAPPG) in the UK highlights insufficient care and concern for women with endometriosis and fibroids…. The WHAPPG has found that women are not treated with dignity, are not provided with sufficient information about their treatment options, and are not told about treatment side-effects appropriately when counselled about their gynaecological health. In a survey of over 2600 women (with endometriosis and fibroids):
- 42% of women said that they were not treated with dignity and respect
- 62% of women were not satisfied with the information that they received about treatment options for endometriosis and fibroids
- Nearly 50% of women with endometriosis and fibroids were not told about the short term or long term complications from the treatment options provided to them.
The report, which will be presented this afternoon (Monday 27th March 2017) by the Group in Parliament, reveals how these women were treated across the pathway, some of the barriers that they faced in getting a diagnosis and treatment, and the complete lack of control and choice they were offered over their own care.
Recommendations
- Information resources – women need to be offered written information on gynaecological issues with a full range of information about the condition and what their options are. These leaflets should be endorsed by the relevant clinical bodies and patient groups and the same generic, pre-approved leaflets should be made available at all centres, Trusts and gynaecology clinics. GPs, secondary care clinicians and nurses should provide or signpost women to high quality information and resources about endometriosis and fibroids, their impact and treatment options.
- Endorsed best practice pathway – this would mean that women would be streamlined more quickly into the right care, saving costs from unplanned admissions and ensuring women get access to all treatments. This should be agreed by the relevant Royal Colleges and patient groups.
- Education to include menstrual health at secondary schools along with wider awareness – far too often women put up with symptoms and incredible pain because they are not aware of what is ‘normal’ and they feel stigmatised by talking about ‘women’s problems’. Education modules should be included at the RCGP and RCOG for recognising and treating fibroids and endometriosis.
- Multi-disciplinary teams and clinicians working together – to ensure access to all treatments for women. Best practice pathway should be followed in this regard.
- NICE Guidance where it exists should be followed. These should not be implemented variably across the country as is currently the situation.
Things to pack for the Hospital
Always confer with your provider!
For Hospital Stay/ Hotel Room (if needed):
- body pillow
- abdominal binder – depending on your physician’s recommendations
- comfy bra: i.e – soft yoga bra, larger sports bra
- soft nightgowns to sleep in / lounge in
- baggy sweatpants, t-shirts, t-shirt dress, maxi dress
- stable, slip on shoes
- mesh panties the hospital provides (try to ask for extras to take with you)
- high waisted soft underwear in a size larger than normal for comfort
- heating pad (for shoulder/gas pains from laparoscopic procedures if okay with your provider)
- water bottle
- long phone charger
- travel squatty potty
- thick clothed head band (to hide your bed head )
- blanket/ stuffed animal/ comfort items
- eye mask
- cozy robe
- Bag Basics: face wipes/ tooth brush/ toothpaste/ chapstick/ lotion/ hairbrush/ deodorant wipes
- Covid 19: extra Face Mask, hand sanitizer
For Car Ride:
* DO NOT EAT ON RIDE HOME
* heating pad, if you have plug access
* extra pillows to put around you for barriers
* step stool if car is high up
* emesis bag/ have hospital send you home with some if possible (throw up bag, just in case)
* small pillow to splint your stomach from seat belt
* neck lumbar pillow for neck comfort in car
OTC Comfort measures:
- Make sure you have the medications gathered that YOUR doctor recommends having after surgery for bowels/ pain/ etc
- Non caffeinated hot tea to help bladder move
- Peppermint Tea/ Peppermint Oil/ Peppermint Drops to help with gas
- hard candy to help with dry mouth/ dry mouth wash
- BioFreeze for shoulder gas pain
For Home:
- wedge pillow to help keep you inclined in bed after surgery
- wedge pillow for under the knees to remove pressure from back
- body pillow / curved body pillow (think maternity pillow)
- abdominal binder (if your provider recommends- don’t forget to ask!)
- comfy bra: i.e – soft yoga bra, larger sports bra
- soft nightgowns to sleep in / lounge in
- maxi dresses or tshirt dresses …nothing with a waistband
- baggy sweatpants and t-shirts
- stable, slip on shoes
- panty liners and larger pads if any procedure was performed vaginally (according to your provider’s recommendations)
- high waisted soft underwear in a size larger than normal for comfort, they also now make period underwear you could get and buy in a size larger
- mesh panties the hospital provides (try to ask for extras to take with you)
- baby wipes (for when you dont feel like taking a bath or need a quick wipe)
- squatty potty
- heating pad
- For Night Stand: water bottle, chap stick, eye mask
- thick clothed head band (to hide bead head)
- step stool if your bed is high
- compression socks
- Large ice packs: 10.5 x 14 ice pack x 3
- bio freeze for shoulder gas pain
Helpful Food Items:
- Meal prep if possible prior to surgery or set up a meal train (*think* easy to digest)
- butter noodles/ chicken noodle soup
- mashed potatoes/ applesauce/ jello/ oatmeal/ pudding
- any drink that you can sip on if you are nauseated
- Bendy Straws to help you drink
- saltine crackers
Personal Medical History Template
A list of current medications and a concise medical history is good to have when visiting any provider. It can help assure that any pertinent information your provider might want to know is available. Here is an example of a brief but thorough medical history. It can give you an idea of what to include. You may also want to write down your top priorities for that visit. That might be obtaining a referral, managing a symptom, or concerns about side effects from a medication. Making a list of your top three priorities can help both you and your provider focus on what’s most important to you for that visit.
Example:
First Name, Last Name DOB XX/XX/XXXX
Insurance: XXXXXX
Insurance Number: XXXXXXXXX
History as of MM/YYYY
| Occupation: list occupation | Habits: Smoking, alcohol, recreational drugs, caffeine | Recreation: exercise, relaxation |
Allergies: Drug/food name – symptom
| Medications: Daily medications including over the counter medications: Drug name, dose (10mg), schedule (in AM) | Supplements: Supplement name, dose, schedule |
| As needed medications: Drug name, dose | |
| Problem List: Interstitial Cystitis/Pelvic Floor Dysfunction Endometriosis (list areas of known) Hypothyroidism |
Surgeries/Therapeutic procedures:
| YYYY | Procedure name brief description (City, State) – examples below |
| 2009 | Total Abdominal hysterectomy with left oophorectomy (converted from LAVH due to extensive dense adhesions and fixed pelvis). Pathology positive for endometriosis, adenomyosis, fibroids (Dr Gyn, City, State) |
| 2010 | Robotic excision of extensive endometriosis, appendectomy, ureterolysis, cystectomy from right ovary with ovarian suspension, bilateral salpingectomy. Hand assisted laparoscopic low anterior bowel resection. Disease extensive and included pathology (15 biopsies sent) confirmed endometriosis of nearly entire pelvic peritoneum, fallopian tubes, ovary, appendix, rectum and sigmoid colon, ureters, right hypogastric artery, pelvic sidewalls. Retroperitoneal fibrosis. (Dr Endo Guru, City, State) – Pelvic Floor and traditional PT post op |
| 2013 | Botox to levator muscles (Dr Endo Guru , City, State) – Pelvic Floor PT after procedure |
| 2014 | Hemi-laminectomy L4/5 with microdiscectomy (Dr Back, City, State) – PT pre/post op |
Diagnostic tests:
| YYYY | Diagnostic test (CT, MRI, colonoscopy) – brief findings (there should be brief sentence or two on the report – examples below) |
| 2009 | Abdominal CT – obstipation |
| 2010 | EGD – esophagitis |
| 2013 | MRI left hip – labrum tear, non-displaced |
| 2014 | Colonoscopy, EGD – hemorrhoids, otherwise normal colon; erosive gastropathy |
| 2014 | MRI LS spine – T11/12 – 8.6 mm left paracentral disc extrusion with encroachment on thoracic cord; L4/5 Broad based posterior disc protrusion with encroachment upon the L5 nerve roots. L5/S1 Small central disc protrusion without significant canal stenosis. S2 6mm prolonged signal intensity – possible Tarlov or other nerve cyst |
Treatment plans (as of MM/DD/YYYY):
| Problem name | Brief description of treatment – see examples below |
| Hypothyroid | Replacement tx: levothyroxine 100mcg, levothyronine 5mcg daily. |
| DDD with L5 left radiculopathy, mild right foot drop | Carbon fiber brace for leg (for hiking, running), walking desk for telework, standing desk in office, yoga/pilates) |
| Interstitial Cystitis/Pelvic Floor Dysfunction | Avoiding trigger foods and activities, bladder instillations (monthly at home for maintenance, more for flares) |
Contacts:
| PCP | Provider name | Phone: Clinic name, location |
| Pelvic Surgeon | Provider name | Phone: Clinic name, location |
| Pharmacy | Pharmacy Name| Phone: |
| Spouse/partner/support person | Name | Phone: |
| Emergency Contact | Name | Phone: |
Managing the relationship with your current doctor
What do you do when you’re not sure your current doctor is up to the task of handling your endometriosis?
What do you do when there’s only one doctor in your town and you can’t afford to make them an enemy?
What do you do when you need a referral to a specialist, and your doctor isn’t happy about it?
What do you do?
Here are some suggestions.
- Try to think long term. You may be irritated at your doctor right now, but you will need someone to follow you medically. If your current doctor is going to be that person, you need to navigate a way to keep the relationship cordial. Telling someone they’re an idiot is not generally helpful, no matter how strong the urge is. Your doctor may be suspicious when you come in with lots of details you learned from the Internet. That’s not a bad position for them to take, because they’re trying to protect you from incorrect information. You want to educate your physician, but not alienate them. So be open. Share what you’ve learned but remember that they went to medical school and may be wary.
- Be respectful. Hopefully you can have a real conversation with your healthcare team. Ask questions, and listen, really listen, to the answers. Is your doctor willing to consider alternative ideas? Or do they already have all the answers? You are hiring them, so you get to decide if you want to keep them as part of your healthcare team. Knowing you can walk away is powerful.
- Try to keep your doctor on your side. Ask for their help. Tell them, “I am grateful for all you have done for me so far. I hope you will support me in the next steps. Can I rely on you to help me?”
- Try to stay calm and relaxed if you are challenged. Don’t get defensive. Imagine that your doctor is trying to protect you against future harm. Tell them, “I appreciate your concern for me, but I have been doing a lot of learning and I have some questions. Can you help me figure out where to go from here?”
- If you seek surgery elsewhere and you decide not to return to your current physician, send a copy of the operative and pathology reports with a very brief note that says “Thank you for having me as your patient. I thought you’d be interested in the outcomes from my surgery. Thanks again for your help.” Keep it brief and keep it pleasant. The goal is to educate, not to claim victory.
- If your doctor threatens to dismiss you as a patient, or actually does, then perhaps it wasn’t a good fit at all. That’s disappointing, but it might be better in the long run, because you’ll be more satisfied with someone whose ideas mesh with yours.
- Routine care can be handled by a GP or Family Doctor, a Nurse Practitioner, or a Physician’s Assistant. Planned Parenthood and clinics like it can provide routine care, screenings, and contraceptives. It’s important not to skip pap smears and mammograms as needed.
Choosing your surgeon
How to Choose the Right Surgeon for Excision Surgery
Deciding to undergo excision surgery is a significant step, but an even bigger decision is selecting the right surgeon. While you may already know that a typical OB/GYN isn’t ideal for this specialized procedure, navigating the list of recommended surgeons can feel overwhelming. Here’s a guide to help you choose the surgeon who’s best suited for your needs.
Key Factors to Consider
1. Training
- Seek a surgeon who is certified in MIGS or FMIGS (Minimally Invasive Gynecologic Surgery and Fellowship-trained). These programs provide advanced training in endoscopic gynecologic surgery beyond standard OB/GYN residency.
- Ensure your surgeon is Board-certified, as this signifies a high standard of training and competence.
2. Experience
- Ask about the number of surgeries they have performed, including laparoscopies and cases of Stage III-IV endometriosis.
- Inquire about their complication rates, how they manage unexpected situations during surgery, and their use of imaging (e.g., MRI or ultrasound) for surgical planning.
- A seasoned surgeon will have a track record of successfully managing complex cases and adapting to challenges.
3. Surgical Team
- Find out who will handle specific tasks, such as addressing bowel, bladder, or diaphragmatic involvement if needed.
- Confirm if the surgery will be completed in one procedure and clarify the roles of fellows or other team members during the operation.
4. Obstetrics Practice
- Experienced excision surgeons often no longer practice obstetrics. Delivering babies is time-intensive, leaving less opportunity to refine skills in advanced endometriosis surgery.
5. Excision vs. Ablation
- Ask about the surgeon’s approach to excision and whether they use ablation (e.g., fulguration or cauterization). Excision is the gold standard for treating endometriosis, though some surgeons may use ablation for small areas. Ensure their methods align with your preferences.
6. Medication Use
- Ask if the surgeon routinely prescribes suppressive medications before or after surgery. If they do, request a detailed explanation of the purpose and duration of such treatments.
7. Costs and Fees
- Don’t hesitate to discuss costs. Ask if they accept insurance, are in-network, or assist with out-of-network claims.
- Understand their payment policies, including up-front fees, installment plans, and charges for consultations or follow-up visits. Transparency here prevents financial surprises.
8. Personal Fit
- Ensure you feel comfortable with your surgeon’s communication style. Are they approachable and thorough in answering your questions? You need a provider you trust and feel at ease with.
What Doesn’t Matter
1. Gender
- The gender of your surgeon has no bearing on their ability to perform excision surgery. While personal preference is valid, focus on their skills and expertise.
2. Tools
- The tools a surgeon uses—be it lasers, robots, or traditional instruments—don’t matter as much as their proficiency with those tools.
3. Bowel Prep
- Some surgeons prefer bowel prep before surgery to reduce infection risk; others don’t. Both approaches are acceptable and depend on surgeon preference, with no significant difference in outcomes.
Factors That Might Matter
1. Reputation
- Reputation can be helpful but isn’t the sole indicator of expertise. Some surgeons may be well-known due to media coverage or excellent bedside manner but lack technical expertise. Research carefully and ask questions to understand their true skill level.
2. Office Operations
- A well-run office can make your experience smoother, while a poorly managed one can cause frustration. Decide how much this matters to you, weighing it against the surgeon’s expertise.
3. Location
- Consider whether you’re willing to travel for care, as top surgeons may not be local. Factor in costs for travel, lodging, and other logistics.
4. Timing
- Some surgeons have long waiting lists. Consider how urgently you need the surgery and whether waiting aligns with your personal timeline.
iCareBetter has a list of video-vetted surgeons. These surgeons are approved by their peers after reviewing their surgical videos. Please go to this link to review the doctors: Video-Vetted Endometriosis Excision Surgeons
What Matters Most
The most common feedback from patients about their surgeons is that they listen. Your surgeon should:
- Pay attention to your concerns and respect your knowledge about your condition.
- Be open to having consultations recorded or attended by a support person.
- Treat you as an active partner in your care, making you feel heard and valued.
Ask all your questions, listen carefully to the answers, and give yourself time to reflect. Trust your instincts. Once you’ve made an informed decision, commit to it and focus on the future with hope and optimism for a better quality of life.
