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How to Endo: A guide to surviving and thriving with endometriosis
After years of dismissive doctors and misinformation, Bridget Hustwaite finally received a diagnosis for her intensely heavy periods, pulsing headaches and the excruciating abdominal pain that makes her ovaries feel like they are on fire. She has endometriosis – hard to pronounce, hard to diagnose and even harder to live with.
Two excision surgeries and one thriving endo Instagram community later, Bridget knows firsthand how much personal research and self-advocating endo sufferers have to do just to have their pain acknowledged. With her trademark enthusiasm, Bridget has blended her own experience with a raft of tips and strategies from health experts and endo warriors to help you thrive whenever you can, and survive on days when you just can't. Covering everything from diet to acupuncture, fertility to mental health and surgery to sex, How to Endo is the essential guide to navigating this sucker punch of a chronic illness.
Inspiring, vivacious and completely honest, Bridget's audiobook is for everyone on the endo spectrum – the battle-hardened warriors, the newly diagnosed and those still searching for answers.
Two excision surgeries and one thriving endo Instagram community later, Bridget knows firsthand how much personal research and self-advocating endo sufferers have to do just to have their pain acknowledged. With her trademark enthusiasm, Bridget has blended her own experience with a raft of tips and strategies from health experts and endo warriors to help you thrive whenever you can, and survive on days when you just can't. Covering everything from diet to acupuncture, fertility to mental health and surgery to sex, How to Endo is the essential guide to navigating this sucker punch of a chronic illness.
Inspiring, vivacious and completely honest, Bridget's audiobook is for everyone on the endo spectrum – the battle-hardened warriors, the newly diagnosed and those still searching for answers.
- GenresNonfiction
Audible Audio
Published July 1, 2021
14 people are currently reading
76 people want to read
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Displaying 1 - 8 of 8 reviews
September 6, 2022
This book empowered me to take charge of my gynaecological health and helped me to approach my specialist armed with all of the information needed to be on track to getting a true diagnosis. I also felt less alone, and questions were answered for me which I didn't even know needed asking! This is a book I will be keeping around a resource throughout my endo journey.
My one problem with this book is the complete dismissal of ablation, which my specialist explained to me is appropriate when combined with excision to treat different levels of endometriosis.
My one problem with this book is the complete dismissal of ablation, which my specialist explained to me is appropriate when combined with excision to treat different levels of endometriosis.
February 9, 2024
“How to endo - A Guide to surviving and thriving with endometriosis” by Bridget Hustwaite.
“..knew her shitty periods weren’t normal..”
Written and read by Australian author who also suffers from endo. My copy was an audiobook. Bolinda audio complete and unabridged.
Super knowledgeable, empowering book, I recommend to everyone, all ages. Learning about endo for part of my own personal research.
“There’s no such thing as too much information in this book. The sooner we normalise periods conversations the better.”
People written in to her, Seeking answers. Her experience helped others through her recovery ❤️🩹
“Endometriosis (endo for short) is a chronic inflammatory condition in which cells similar to the lining of the uterus, endometrium, grow outside of this layer and result in pain (capital P), inflammation, organ dysfunction and in some cases, infertility.”
“Endometriosis is not the endometrium.”
“The innies have periods. The outies have no where to go, thickening each month. Lead to endometriomas aka chocolate cysts..”
- adenomyosis
- PCOS
- 4 D’s:
- dysmenorrhea, (there are 2 types) - if they say secondary they need to look further for endo;
- Dysuria: (pain discomfort when urinating);
- Dyschezia: excessive straining with stools;
- Dyspareunia: painful sexual penetration intercourse. It can be mistaken as two other conditions: Vulvodynia (pronounced volidineea) which is chronic pain or discomfort around the opening of your vagina: vulva,
- and vaginismus - muscles around the vagind tighten or spasm involuntarily.
- Uterine fibroids
- irritative chronic symptoms
Social media and self diagnosis / self advocacy:
“.. we must find the missing pieces…”
“..found comfort on online communities..”
“launched @endogram on instagram..”
“Killing the mood”
Hear hear!!! Conversation killer when you open up about yourself and no one understands..
“..out of the self management techniques Cannabis was rated the most effective for managing pain..”
“How can I get it? How can you obtain medicinal cannabis varies depends on where you live and the regulations of each country, state, county or province. It seems quite accessible in parts of America.. In UK medicinal cannabis is illegal but the guidelines disappointedly says not to prescribe to people suffering with chronic pain. In Australia, the laws vary from state to state but doctors can legally prescribe medicinal cannabis through regulated half ways like special access level b and authorised prescriber scheme.”
“You don’t have to give birth to have a family” - Jessica Minay, Chapter 11 - fertility and parenting.
“..I have many children in the forms of plants, I very much lack tiny humans..”
“Isn’t it weird how we give ourselves timeframes to do things? …But when it comes traditional milestones such as parenthood, the pressure to achieve by a certain age is insane. It’s such a concerning societal issue to the vagina owners as our sole purpose in the world is to have a child. … But if you don’t want to? What if you can’t? For a lot of people with endo fertility is a tough conversation. Not everyone with endometriosis will struggle with fertility. But according to Endometriosis Australia, up to 50 per cent will have difficulty in getting pregnant. There are two main reasons behind why and how endo can affect fertility.
One, inflammation. Inflammatory nature of endometriosis, can in-pare the function of both: eggs and sperm. As well as making an unsuitable environment for egg fertilisation, embryo development, and implantation.
Two, physical symptoms. As the disease progresses our anatomy can be distorted through scar tissue and lesions which can sometimes leads to blocked fallopians tubes and impact the passage of sperm and eggs through the pelvis.”
“Another way endometriosis can affect fertility is obvious, painful sex..”
“So what actually constitutes infertility? According to the World Health Organisation and the international committee for monitoring assisted reproductive technology, infertility is disease of the reproductive system defined by the failure which to achieve a clinical pregnancy after twelve months or more of regular unprotected sexual intercourse.”
“Having a baby is not a medical cure of endo - shocking that doctors suggest this!!”
“Have a baby or a hysterectomy - not effective for endo..”
Author is fortunate that she will be able to conceive. Not everyone is fortunate if they want a child of their own.
“What can help fertility? For Starters: lesions surgery - physically cutting out the inflammatory cells; acupuncture (can boost the chance of fertility by reducing stress and increase blood flow to reproductive organs & balance the endocrine system); pelvic floor physio therapy (decrease painful sex). If you’re still struggling… fertility treatment such as IVF, involves injections and release hormone levels and surgical procedures to take eggs from the ovaries. These eggs can be fertilised with sperm in a laboratory environment to create an embryo. The embryo is placed in the uterus and few days later, to help the conception process. Success of this depends on few factors. Like age and how many eggs were retrieved, & IVF IS NO WALK IN THE PARK. It can be an overwhelming experience and can take physical and emotional tolls. As well as sting your pocket! Another option is Egg freezing. (Out of pocket fee and Storage cost per year ).Another emotional experience. 😭 Finally third party assistance, egg donations, sperm donations, surrogates. There’s a range of fertility clinics too. Don’t be afraid to shop around. Huge investment in emotional and financial..”
Parenting: TRIGGER WARNING:
“The following may be triggering for some listeners if you are having trouble with trying to conceive.. No words will ever do justice to those challenges and feelings of despair but if there’s one conversation needs to start changing. It’s the narrative that a family’s determined by our ability to give birth. Frankly very dated and discriminatory towards infertile people and also, those in same sex relationships, and those who don’t want to pop out a kid.”
“…there are various ways of forming a family and they don’t have to be determined by medical procedures. Like endo, parenthood and family, are not one size fits all.. You are worthy and valid with what ever path you take.”
Life as an endo mum by Jessica Taylor - QENDO .. her first born was endo..
“Another treatment options to add to my forever expanding toolbox..”
“Whenever I looked at my swollen endo belly, so much like the belly of a mum-to-be, it was a reminder.”
“Endometriosis was my first born, but I was not yet a mother.” Then she found herself pregnant of a beautiful baby girl…
“When are you going to have a baby? - an Intensely personal question that someone can ask.”
Yes, it stings. I wish people wouldn’t ask. You never hear XYZ ask a man this question.
Pregnancy: endo can affect your fertility.
“For some getting pregnant isn’t difficult. For others there are some strategic planning and a few consoles, maybe fertility medications, and a viable pregnancy takes an arm and leg…”
ENDO IS NOT CURED BY PREGNANCY!
“Endometriosis can be genetic.”
“Active journaling can help.”
“Tips to Self monitor:
1. You know your mind and body, listen to what it tells you.
2. Allow yourself to recognise when it is too much.
3. Don’t be hard on yourself.
4. Contact a person you trust and feel comfortable to share your feelings with.
5. Don’t be afraid to admit too much or it’s not a good time for you.
6. Write down a few things that help you lessen stress and anxiety.”
Chapter 12: work and study
“You don’t look sick”
“Mask my pain like a pro..”
“There’ll be times where you’re working along side people who simply don’t get it.”
Performance Anxiety..
“Telling your employer about your condition.. private information.. frame it optimistically and positively, offer solutions.”
“E.g., ‘I want talk to you because I think it is important that you are aware of a condition that I have called endometriosis. It’s a chronic whole body illness which is similar to lining of my uterus growing in other places and it affects me in a few ways.. (include symptoms) Here’s some information that hopefully help you gain a better understanding of what endo entails. I thought about some processes we can follow to ensure I can continue to work to the best of my ability. (This you include some suggestions). I would really love to hear what you think of this options and I’m happy to answer any questions. I’m looking forward to making this work. And as Always I value your support and feedback.”
Download an information sheet from Safe Work Australia - Supporting workers with endometriosis in the workplace. The link is: https://www.safeworkaustralia.gov.au/...
Endometriosis Friendly Scheme in UK:
https://www.endometriosis-uk.org/site...
Or ask your GP to send a letter. Can you do your job at home? WFH on chronic days.
Know your rights. Print your contract and how it goes by law. If you’re getting harassed by your condition, speak to HR or go outside. Get responses in writing.
Workplace laws.
Be prepared and create a (flare up) checklist at work:
1. Pain medications
2. Heat packs (with a Velcro strap so you can wear while moving around.)
3. Stick on heat pads
4. To avoid burns wear high waisted underwear with them
5. Urgent medical notice endo card
6. Drink lots of water
7. Sleep tens machine (if works for you?)
8. Listen to your body, if you can’t function put yourself first. Rest.
9. Listen to Author: “You’re doing the best you can. Don’t let your productivity define your worth. Always put our health needs first.”
10. Study. Keep a diary of when you’re crashing down.
11. Go on to Etsy and buy a “endometriosis pain card”.
Saying NO:
“We always want to show up for people, and meet their expectations, make them happy. But as chronic illness sufferer it can easily turn into a disruptive habit that comes at a cost. If you don’t honour your needs, you might start feeling resentment and regret, this can lead to even more negative self talk which isn’t fun.”
“SELF CARE ISN’T SELFISH. It’s an ongoing practice that is key in maintaining a healthy state of mind and preventing burnout.”
Play: is “more about preparation..”
- virtual meet ups with friends
- Sleepovers
- Online support groups
How to help:
- “endo is for everyone”
- “An isolated experience”
“Endo Warriors! Endo Pals! Endo Friends! One in ten people!”
“Bring patients together, bring support to all those affected to this condition.”
“But you don’t look sick” - despite how I look is not always representative of how I feel this statement kind of lies with lying about our illness. Even though we have a medical diagnosis. What do you need to see in order to believe me? The actual endo itself? I can show you my surgery pics, would that do the trick?”
“We’re not faking to be sick. We’re faking to be well.”
It’s like mental health, you can’t see it but it’s there. Conditions like endo and mental health are not seen, not out there in public awareness spaces like cancer or flu, because you cannot see it on the surface, or visible symptoms it’s not there.
What to say:
“‘I’m here to listen and support you’ - this is a real nice way to show you’re not alone and will listen without judgement.”
“How is your pain?” - you’re acknowledging the pain is real.
“What do you feel like eating? Let me drop something off for you.” - offering a specific item like food or particular help with a chore, is more effective than saying ‘let me know if you need anything’.
“Don’t worry if you don’t feel up for chat, I’ll be here when you’re ready.” - saying stuff like this makes us feel less 💩 (we feel 💩 when we have to cancel plans).
“Just checking in, to say we’re thinking of you.” - always checking in and not seeing friends for months. A simple gesture can bring so much comfort.
Your Role:
things loved ones do when it’s too much/make it a little bit easier:
- PJ parties - staying in instead of going out.
- Sit with me when it hurts too much to move.
- Still invite us to things even if we can’t make it, or didn’t come before. Understand we’re trying our best.
- Except our limitations.
- Celebrate our good days and support our bad days.
- Look after yourself too.
- Compassion fatigue - don’t set yourself on fire to keep others warm. You need to look after yourself too.
- Keep F***ing Fighting!
“Final word: Hope you’re feeling good, feel empowered. You can still live a beautiful life and you deserve to live a beautiful life. You will gain new parts that are wiser and take no shit from nobody.”
“..knew her shitty periods weren’t normal..”
Written and read by Australian author who also suffers from endo. My copy was an audiobook. Bolinda audio complete and unabridged.
Super knowledgeable, empowering book, I recommend to everyone, all ages. Learning about endo for part of my own personal research.
“There’s no such thing as too much information in this book. The sooner we normalise periods conversations the better.”
People written in to her, Seeking answers. Her experience helped others through her recovery ❤️🩹
“Endometriosis (endo for short) is a chronic inflammatory condition in which cells similar to the lining of the uterus, endometrium, grow outside of this layer and result in pain (capital P), inflammation, organ dysfunction and in some cases, infertility.”
“Endometriosis is not the endometrium.”
“The innies have periods. The outies have no where to go, thickening each month. Lead to endometriomas aka chocolate cysts..”
- adenomyosis
- PCOS
- 4 D’s:
- dysmenorrhea, (there are 2 types) - if they say secondary they need to look further for endo;
- Dysuria: (pain discomfort when urinating);
- Dyschezia: excessive straining with stools;
- Dyspareunia: painful sexual penetration intercourse. It can be mistaken as two other conditions: Vulvodynia (pronounced volidineea) which is chronic pain or discomfort around the opening of your vagina: vulva,
- and vaginismus - muscles around the vagind tighten or spasm involuntarily.
- Uterine fibroids
- irritative chronic symptoms
Social media and self diagnosis / self advocacy:
“.. we must find the missing pieces…”
“..found comfort on online communities..”
“launched @endogram on instagram..”
“Killing the mood”
Hear hear!!! Conversation killer when you open up about yourself and no one understands..
“..out of the self management techniques Cannabis was rated the most effective for managing pain..”
“How can I get it? How can you obtain medicinal cannabis varies depends on where you live and the regulations of each country, state, county or province. It seems quite accessible in parts of America.. In UK medicinal cannabis is illegal but the guidelines disappointedly says not to prescribe to people suffering with chronic pain. In Australia, the laws vary from state to state but doctors can legally prescribe medicinal cannabis through regulated half ways like special access level b and authorised prescriber scheme.”
“You don’t have to give birth to have a family” - Jessica Minay, Chapter 11 - fertility and parenting.
“..I have many children in the forms of plants, I very much lack tiny humans..”
“Isn’t it weird how we give ourselves timeframes to do things? …But when it comes traditional milestones such as parenthood, the pressure to achieve by a certain age is insane. It’s such a concerning societal issue to the vagina owners as our sole purpose in the world is to have a child. … But if you don’t want to? What if you can’t? For a lot of people with endo fertility is a tough conversation. Not everyone with endometriosis will struggle with fertility. But according to Endometriosis Australia, up to 50 per cent will have difficulty in getting pregnant. There are two main reasons behind why and how endo can affect fertility.
One, inflammation. Inflammatory nature of endometriosis, can in-pare the function of both: eggs and sperm. As well as making an unsuitable environment for egg fertilisation, embryo development, and implantation.
Two, physical symptoms. As the disease progresses our anatomy can be distorted through scar tissue and lesions which can sometimes leads to blocked fallopians tubes and impact the passage of sperm and eggs through the pelvis.”
“Another way endometriosis can affect fertility is obvious, painful sex..”
“So what actually constitutes infertility? According to the World Health Organisation and the international committee for monitoring assisted reproductive technology, infertility is disease of the reproductive system defined by the failure which to achieve a clinical pregnancy after twelve months or more of regular unprotected sexual intercourse.”
“Having a baby is not a medical cure of endo - shocking that doctors suggest this!!”
“Have a baby or a hysterectomy - not effective for endo..”
Author is fortunate that she will be able to conceive. Not everyone is fortunate if they want a child of their own.
“What can help fertility? For Starters: lesions surgery - physically cutting out the inflammatory cells; acupuncture (can boost the chance of fertility by reducing stress and increase blood flow to reproductive organs & balance the endocrine system); pelvic floor physio therapy (decrease painful sex). If you’re still struggling… fertility treatment such as IVF, involves injections and release hormone levels and surgical procedures to take eggs from the ovaries. These eggs can be fertilised with sperm in a laboratory environment to create an embryo. The embryo is placed in the uterus and few days later, to help the conception process. Success of this depends on few factors. Like age and how many eggs were retrieved, & IVF IS NO WALK IN THE PARK. It can be an overwhelming experience and can take physical and emotional tolls. As well as sting your pocket! Another option is Egg freezing. (Out of pocket fee and Storage cost per year ).Another emotional experience. 😭 Finally third party assistance, egg donations, sperm donations, surrogates. There’s a range of fertility clinics too. Don’t be afraid to shop around. Huge investment in emotional and financial..”
Parenting: TRIGGER WARNING:
“The following may be triggering for some listeners if you are having trouble with trying to conceive.. No words will ever do justice to those challenges and feelings of despair but if there’s one conversation needs to start changing. It’s the narrative that a family’s determined by our ability to give birth. Frankly very dated and discriminatory towards infertile people and also, those in same sex relationships, and those who don’t want to pop out a kid.”
“…there are various ways of forming a family and they don’t have to be determined by medical procedures. Like endo, parenthood and family, are not one size fits all.. You are worthy and valid with what ever path you take.”
Life as an endo mum by Jessica Taylor - QENDO .. her first born was endo..
“Another treatment options to add to my forever expanding toolbox..”
“Whenever I looked at my swollen endo belly, so much like the belly of a mum-to-be, it was a reminder.”
“Endometriosis was my first born, but I was not yet a mother.” Then she found herself pregnant of a beautiful baby girl…
“When are you going to have a baby? - an Intensely personal question that someone can ask.”
Yes, it stings. I wish people wouldn’t ask. You never hear XYZ ask a man this question.
Pregnancy: endo can affect your fertility.
“For some getting pregnant isn’t difficult. For others there are some strategic planning and a few consoles, maybe fertility medications, and a viable pregnancy takes an arm and leg…”
ENDO IS NOT CURED BY PREGNANCY!
“Endometriosis can be genetic.”
“Active journaling can help.”
“Tips to Self monitor:
1. You know your mind and body, listen to what it tells you.
2. Allow yourself to recognise when it is too much.
3. Don’t be hard on yourself.
4. Contact a person you trust and feel comfortable to share your feelings with.
5. Don’t be afraid to admit too much or it’s not a good time for you.
6. Write down a few things that help you lessen stress and anxiety.”
Chapter 12: work and study
“You don’t look sick”
“Mask my pain like a pro..”
“There’ll be times where you’re working along side people who simply don’t get it.”
Performance Anxiety..
“Telling your employer about your condition.. private information.. frame it optimistically and positively, offer solutions.”
“E.g., ‘I want talk to you because I think it is important that you are aware of a condition that I have called endometriosis. It’s a chronic whole body illness which is similar to lining of my uterus growing in other places and it affects me in a few ways.. (include symptoms) Here’s some information that hopefully help you gain a better understanding of what endo entails. I thought about some processes we can follow to ensure I can continue to work to the best of my ability. (This you include some suggestions). I would really love to hear what you think of this options and I’m happy to answer any questions. I’m looking forward to making this work. And as Always I value your support and feedback.”
Download an information sheet from Safe Work Australia - Supporting workers with endometriosis in the workplace. The link is: https://www.safeworkaustralia.gov.au/...
Endometriosis Friendly Scheme in UK:
https://www.endometriosis-uk.org/site...
Or ask your GP to send a letter. Can you do your job at home? WFH on chronic days.
Know your rights. Print your contract and how it goes by law. If you’re getting harassed by your condition, speak to HR or go outside. Get responses in writing.
Workplace laws.
Be prepared and create a (flare up) checklist at work:
1. Pain medications
2. Heat packs (with a Velcro strap so you can wear while moving around.)
3. Stick on heat pads
4. To avoid burns wear high waisted underwear with them
5. Urgent medical notice endo card
6. Drink lots of water
7. Sleep tens machine (if works for you?)
8. Listen to your body, if you can’t function put yourself first. Rest.
9. Listen to Author: “You’re doing the best you can. Don’t let your productivity define your worth. Always put our health needs first.”
10. Study. Keep a diary of when you’re crashing down.
11. Go on to Etsy and buy a “endometriosis pain card”.
Saying NO:
“We always want to show up for people, and meet their expectations, make them happy. But as chronic illness sufferer it can easily turn into a disruptive habit that comes at a cost. If you don’t honour your needs, you might start feeling resentment and regret, this can lead to even more negative self talk which isn’t fun.”
“SELF CARE ISN’T SELFISH. It’s an ongoing practice that is key in maintaining a healthy state of mind and preventing burnout.”
Play: is “more about preparation..”
- virtual meet ups with friends
- Sleepovers
- Online support groups
How to help:
- “endo is for everyone”
- “An isolated experience”
“Endo Warriors! Endo Pals! Endo Friends! One in ten people!”
“Bring patients together, bring support to all those affected to this condition.”
“But you don’t look sick” - despite how I look is not always representative of how I feel this statement kind of lies with lying about our illness. Even though we have a medical diagnosis. What do you need to see in order to believe me? The actual endo itself? I can show you my surgery pics, would that do the trick?”
“We’re not faking to be sick. We’re faking to be well.”
It’s like mental health, you can’t see it but it’s there. Conditions like endo and mental health are not seen, not out there in public awareness spaces like cancer or flu, because you cannot see it on the surface, or visible symptoms it’s not there.
What to say:
“‘I’m here to listen and support you’ - this is a real nice way to show you’re not alone and will listen without judgement.”
“How is your pain?” - you’re acknowledging the pain is real.
“What do you feel like eating? Let me drop something off for you.” - offering a specific item like food or particular help with a chore, is more effective than saying ‘let me know if you need anything’.
“Don’t worry if you don’t feel up for chat, I’ll be here when you’re ready.” - saying stuff like this makes us feel less 💩 (we feel 💩 when we have to cancel plans).
“Just checking in, to say we’re thinking of you.” - always checking in and not seeing friends for months. A simple gesture can bring so much comfort.
Your Role:
things loved ones do when it’s too much/make it a little bit easier:
- PJ parties - staying in instead of going out.
- Sit with me when it hurts too much to move.
- Still invite us to things even if we can’t make it, or didn’t come before. Understand we’re trying our best.
- Except our limitations.
- Celebrate our good days and support our bad days.
- Look after yourself too.
- Compassion fatigue - don’t set yourself on fire to keep others warm. You need to look after yourself too.
- Keep F***ing Fighting!
“Final word: Hope you’re feeling good, feel empowered. You can still live a beautiful life and you deserve to live a beautiful life. You will gain new parts that are wiser and take no shit from nobody.”
This entire review has been hidden because of spoilers.
September 25, 2024
I love the writing style, made me feel like I really knew someone else with endo. It covered so many aspects of endo that I didn’t even think of. Whilst being so educational and covering heavy topics, it never felt like a slog to read, it was easy to turn the page and soak up the information, staying engaged. Thank you for empowering and validating those with endo, I’ve learned so many things, and it’s made me realise the gravity of what I have and that I really do need to be my own advocate with this chronic illness.
April 8, 2022
Amazing, amazing, amazing. A must read for people with Endometriosis.
January 4, 2024
Very informative.
April 24, 2024
THE most validating book i’ve ever read and will probably ever read
February 3, 2025
What do you mean that an ultrasound can’t diagnose endometriosis???
Why were they doing it then?
Why were they doing it then?
Displaying 1 - 8 of 8 reviews