Happy Friday!
This one’s for all my Warriors!
“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
― Cassandra Clare, Clockwork Angel
I hope you have a wonderful weekend. And if it’s a rough one, remember – you are strong enough to get through this. Love, Lisa.
Have an Endometriosis surgery scheduled? Here’s a list of things a few of my EndoSisters and I recommend having handy!! If you’d like to add something, please leave a comment below. 🙂
Chapstick
Lozenges (to soothe that post-surgery throat)
Snacks for afterward, especially if you have any food allergies or intolerances.
Blankets
Bottle of water
Chewing gum (it has helped some gals with nausea on the drive home)
Ice packs
Overnight bag with clothes, toiletries, etc (just in case you have to stay in the hospital overnight)
Pillows
Sleep Mask (one of those eye covers; you may get ill with all of the movement of passing cars and landscape)
Travel pillow (for stuffing between your stomach and your seatbelt!)
Vomit bag
A friend or family member (seriously for like the first 3 days…don’t be alone. You don’t know what your body can and can’t do…and you should be resting)
Comfy clothes. Nothing that binds. Think giant t-shirt, moomoo, or even naked!
Fiber!! (oh man…you need to keep poopin’)
Footstool (to help get in and out of bed)
Gas-X (helps break up the surgery gas that’s floating around inside your body still)
Grabby-stick-thingy (you know, that old people use to get stuff off of the top shelf)
Heating Pad
Ice Packs
Pads (yep…you may be bleeding afterward
Pillow with armrests (keeps you propped up, while lounging, and keeps pressure off your abs.)
Pre-made, easy meals (soups, crackers, etc.)
Prescriptions (painkillers AND anti-nausea medication)
Stool softener!!!!!
Squatty-Potty or something similar
Tape your cell phone charger to your headboard (you don’t want to bend down to get it!)
Walker (yeah, with tennis balls and everything – seriously helps you get around…not to mention sit/stand)
Going in for a surgery for Endometriosis? Not sure what to ask? Here’s a list of questions you may want to bring with you.
Some of these may seem like common sense…but it’s good to have them written down to ask. You may forget while overwhelmed or in a fog! Feel free to add to these! Have any suggestions you’d like me to add? Drop me a comment below. 🙂
What will you do if you open me up and see Endometriosis? (Ask this, because many women have their diagnostic surgery and NONE of the endo is removed – just a confirmed diagnosis and a referral to another doctor to deal with the Endo).
Do you plan to excise (cut out) the Endo or burn (ablation) them? (Excision is considered the best way to deal with it as ablation may not get all of the lesion. Some surgeons only burn away the lesion if it’s in a difficult location to cut. Some surgeons ONLY use ablation and do not cut away the lesions.)
Will you remove adhesions? (Adhesions are scar tissue, oftentimes spider-web like and can twist organs or weave them together).
What’s the worst case scenario?
Will you take photographs or video? If yes, may I have a copy? (if you get photographs, make sure they’re labeled so you know what you’re looking at)
If you find Endometriosis on other organs, such as my bowels, bladder, liver, ureter, diaphragm, etc., are will you be able to remove it? Or will you call in a specialist to assist with the surgery? Or will a second surgery need to be scheduled to handle it?
May I have any painkiller and/or anti-nausea medications filled prior to the surgery date?
Anything you can do to lessen the gas pain that occurs in my right shoulder? Tilt my head? Warm gas? Expel more gas before closing me up? What are the complications of any of these methods? (This may help with the shoulder pain many women complain about after a laparoscopy.)
How long do you expect the surgery to last? Any way someone can update my (person who is in the waiting room) as they wait in the lobby once surgery begins? (My first surgery they expected surgery to last 1.5 hours and it lasted 4; nobody updated them on status and it was stressful and worrisome for them.)
Any “best” position to sleep while recovering?
Anything I can do to make this surgery easier on you?
What did you find?
Is it normal for my incisions to bleed or ooze?
How long shall I keep on the bandage for the belly button?
How long shall I keep on the bandages for the small incisions?
What do I do if a stitch/staple/glue edge sticks out?
When can I shower?
When should I be worried if I don’t poop? Three days? Less? More?
Make sure you understand the restrictions while healing. Every surgeon is different. You may not be able to lift something over a certain amount of weight for a few weeks, etc.
Make sure you get the telephone number for the Nurse or Doctor in case of emergencies. They generally have it written on a sheet of paper. Put that somewhere handy!
May I have a copy of the photographs/video taken during surgery (yeah, I know we asked that in pre-op…but no harm at your post-op)
What Stage of Endometriosis do I have? (there are four stages…each stage depicts a level of infiltration, but not necessary dictates your levels of pain. You can have Stage I Endo with SO MUCH PAIN or Stage IV Endo with no pain whatsoever. It’s just something good to know.)
How long until we can have sex? Swim? Go to gym? Return to work?
Now what?
**Updated July 11, 2018**
Devon was 25 when she was diagnosed with Endometriosis. She lives in Yorkshire, UK. Now a year after her diagnosis, she tells her story…
Devon’s Journey: Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologise for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.
So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have an 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was in fact bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.
That is why I don’t know if my journey started 2 years ago or 12.
2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favourite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.
This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.
At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!
A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.
From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.
Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following it’s removal I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain. In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.
To this date I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopy’s should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.
Most of all, I am educating myself.
Throughout my journey it has felt like The Blind leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!
Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.
If you would like to e-mail Devon, she‘d love to hear from you or you can follow her blog.
I want to send a special Thank You out to Devon for being brave enough to share her journey with us today! While reading this, I went through a gambit of emotions: I related to a lot of what you were saying, then I was furious at the dismissal by your physicians, then I was elated at your strength, then sad that your pain has returned. Your story captures such a large gambit of what we endure daily. Thank you. ❤ Yours, Lisa.
And if YOU would like to share your story, I’d love to share it. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
Susie is 41-years-old and was just diagnosed with a surprise Endometrioma in a very surprising location. She lives in Austin, Texas and is coming to grips with her diagnosis, as well as searching for answers and support.
Susie’s Journey: I began experiencing symptoms of my disease when I was in my early 20’s around 2004-2006, I felt a lump on the right side of my groin that moved around a bit. I had a pap smear that showed normal results, then a sonogram that did show the mass, and then a CT scan that was inconclusive. I was told that cancer was ruled out and that they had no idea what it was, but that it wasn’t worth doing a biopsy over, but that if it ended up causing problems in the future, I might probably have to have one.
Being a young 20 year old, I feared the idea of anyone cutting my groin open and could not afford to get off of work for surgery anyway. I lived with the mass for over a decade. Throughout that time, I began noticing it growing larger and becoming more firm. It was no longer moveable and it swelled up around my menstrual cycle. The day before or the day I started my periods, there was extreme pain. The pain also continued up to a week after my periods. Sometimes, it made it a little difficult to walk and I’d get a bit of pain on my right leg, but not too much. It prevented me from moving and sitting freely. I couldn’t even cross my legs.
Fast forward to 41 years old, I finally decided that it was time to do something about it. I read up about endometriosis and even asked the doctor if it was a possibility. After about several pelvic exams, 2 or 3 sonograms, a CT scan, and a very painful biopsy that required 2 shots of local anesthesia in order to retrieve 2 samples of the mass, I was finally diagnosed with endometrioma.
I was given the option of excision or just living with it.
Doctor asked me if I’ve considered birth control and slightly suggested I use it. I told him that birth control would not remove the mass and did not help me much when I was on it in my 20’s and that I wanted this lump out of me. He said that he would perform a simple outpatient excision that would require very little (if any) time off of work and that I would be running around just fine afterwards. About 2 weeks ago, I finally had the surgery that did verify “endometriosis”. I was completely anaesthetized to sleep. Btw, I’m not sure what the difference of “endometrioma” and “endometriosis” is because both words keep getting used by my doctor and pathology report. My doctor corrects me when I call it “endometriosis” and says it is “endometrioma” and then the pathology report says “endometriosis”. My doctor seems impatient when I ask him to explain the difference. I almost wonder if he actually knows about what I have and doesn’t want to confirm my suspicion. I am in the dark about that right now.
WELL, I awoke from my surgery to find that my right foot and leg were asleep. I could barely move my toes. My feet have a tingly feeling and my leg has the same feeling as though it’s been asleep and is about to start waking up. I was told that because I could move my toe, it was a good sign and that I should be able to start walking just fine again in about a day. Since then, although, I regained some feeling back to the upper part of my leg and some of the left side of my right foot, I am experiencing Charley Horses” both in my sleep and mostly when I walk for the past week. I still have to walk very slowly with a cane and an extreme limp.
Yesterday, I was admitted into the emergency room to check for DVT (Deep Vein Thrombosis aka “blood clots in the leg”) but I checked out clean. The emergency staff told me that I did not suffer from dehydration and that my potassium levels were fine and that all he can think is that maybe my leg’s nerves are cramping because they are “waking back up”. I don’t know if I’ll be able to walk like normal again. It’s very hard for me to get around at work and college classes are difficult to get to. I have to have people do things for me. I had to cancel my birthday plans to go to the beach because I don’t think I’ll be able to walk around in the sand and the idea of a wheelchair is very depressing. I am getting married in October and am mortified of the idea of having to walk down the aisle or live my life with a cane. My follow-up appointment with my surgeon is next week. Although, I hope that I will be okay by then or that he’ll be able to help me, I don’t know if he’ll have any help to offer. It’s scary how little the medical industry knows about endometriosis. What is wrong with my leg???! Also, now I’m hearing that just because you have endometrioma excised doesn’t mean that it won’t come back and that I should consider a hysterectomy. I don’t want to go through this again. I almost regret having the surgery in the first place. I hope that it was worth it and that I will be able to walk again.
Words of Advice: Read as much as you can about it. Meet as many people as you can. Ask as many questions as you can. Don’t give up.
The Last Word: I hope that we can get more endometrioma awareness outreach out there.
If you would like to e-mail Susie, please feel free to.
I want to send a special Thank You out to Susie for being brave enough to share her journey with us today! Congratulations on your upcoming nuptials!! And good luck with your healing and the circumstance with your leg. You have my email address, woman – keep me posted!! ❤ Yours, Lisa.
And if YOU would like to share your story, send it to me; I’d love to share it. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
Well, it’s finally happened!
We’ve released our Special Edition t-shirts and beach towels, sporting the design by Century House Art. You may remember our 2017 Coloring Contest and this was one of our entries.
Check out our Teespring store! 100% of the profits are sent to the Endometriosis Foundation of America.
There is no true deadline to order your t-shirt, tank top, or towel. Once the campaign ends, it will automatically renew. So, please don’t feel pressured to buy one now if you cannot afford it. They’ll be here waiting for you when you can.
A 30″x62″ cotton beach towel specifically in a bright Endo yellow. Wrap up in this plushy towel and proudly flaunt your Endo Awareness. The towel features the colorful design by Century House Art, the Bloomin’ Uterus logo, and our blog’s webpage. Each towel costs $30.99, and $10 of each sale will be donated directly to the Endometriosis Foundation of America via Teespring’s payout program.
My towel arrived! It’s massive! And oh-so-soft!
Each t-shirt shows Century House Art’s design on the front and our typical Bloomin’ Uterus logo and information on the back. You have your choice of style:
Gildan Women’s Relaxed Tee for $21.99 ($6.90 is donated to the EFA)
BELLA+CANVAS Unisex Tank for $21.00 ($4.91 is donated to the EFA)
BELLA+CANVAS Women’s Fitted Tank for $21.00 ($4.91 is donated to the EFA)
Women’s Premium Tee for $21.00 ($5.06 is donated to the EFA)
Hanes Tagless Tee (unisex) for $17.99 ($5.57 is donated to the EFA)
Please find the style and size options that work best for you. As, as always, if you’re unhappy with the print work (sometimes they’re wonky) or quality of the item when you receive it, please contact Teespring’s customer service. They will work with you to either reprint the product or issue you a refund.
And, as always, our usual line of Bloomin’ Uterus t-shirts, stickers, and mugs is always available for you to purchase as well. (And all profits are donated to the Endometriosis Foundation of America…always). Shop all of our products at our Teespring store
Well, it’s Friday! I apologize for my absence last week.
A few of my local EndoSisters are going in for surgeries next week. And they are both holding their heads high and forging ahead. But I also know they may harbor the doubts and fears we all hear in the back of our heads just before a surgery: “What if they don’t find anything?” “What if it’s all in my head?” “What if it’s back?”
Well, today’s quote is for them. And for you. I’ve been blessed with this illness because I’ve met some of the bravest people I’ve ever known. The strongest. The most supportive. And even then, we need comfort; even we Warriors need to be held, to be comforted, to be reminded that we are worthwhile. And when the bad days and flares rear their ugly head, remember this:
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.”
― Mary Anne Radmacher
Keep looking forward. As much as you can. And when you’re curled up in a ball on the bed, crying because pain meds aren’t kicking in, or upset because someone didn’t believe you, or you’re just overwhelmed over the entire idea of this illness and any inabilities it may create…remember that there is always tomorrow. And the day after that. And the day after that.
And if you need it, take my hand. I’m right here with you. And we can do this, together.
Love, Lisa
The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help. They’ve recently received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!! I’ve participated in the study and so can you. Yes, you!! But you must be over the age of 18 and NOT pregnant or breastfeeding. Don’t live in the New York area and feel like you can’t help in any way? That’s not true! You can work via e-mail and express mail.
What’s the study all about? Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”
What do you have to do? You sign a consent and answer a few questionnaires. Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional).
Also, they’d still like the help of parents, siblings, or children of someone who suffers from Endometriosis. This goes for men and women! I know I’ll be poking my brothers and mother for this one! Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would). I always hear, “I wish there was something I can do to help…” and now they can!
Don’t have Endometriosis? YOU CAN STILL HELP! The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis. You’d go through the same process: questionnaire, DNA sample, period sample (again…this last bit is totally up to you).
Reach out to someone on the ROSE team by contacting them:
Telephone: (516) 562-ENDO (3636), send them an email, visit their webpage, or view their Flyer.
*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*
Happy Friday! Another week has passed! I hope that you had a good one.
Once more I’ll be on the road heading out to Arizona again to spend precious time with family.
This week a woman I love dearly has endured a lot of pain and emotional rollercoasters due to IVF treatments to freeze her eggs, several of my EndoSisters have scheduled surgeries to take place over the next few weeks to months, and my old boss sent me photographs of his newborn son. And I am reminded that despite the pitfalls, there is always an “up” somewhere – which led me on a quote search for today.
And I’m in love, yet again.
“Life is like a piano. White keys are happy moments and the black ones are sad moments. Both keys are played together to give us the sweet music called Life.”
― Suzy Kassem, Rise Up and Salute the Sun: The Writings of Suzy Kassem
And, of course, that led me right back to my favorite piano piece, Life and Death, played by Paul Cardall:
I now believe this will be my little anthem while I’m stuck deep in a pitfall or need to help pull someone out of theirs. Just a little mental theme song to remind me that both the good and the bad make life the beautiful thing that it is.
Have a wonderful weekend, my friends. Love, Lisa
A New Publication re: Abdominal Wall Endometriosis – added a study about a 36-year-old woman who complained of pain along her appendectomy scar.
Endometriosis & the Lungs – added a study of a 46-year-old woman who had fluid in her pleural cavity. After many visits to the ER for coughing, chest pain, difficulty breathing, they suspected she had pneumonia and treated her with antibiotics. Eventually, she had a surgery and was diagnosed with thoracic endometriosis. Also added a study of a 14-year-old girl who sustained nine lung collapses in two years.
Have You Seen the Endometriosis Commercials on TV? – still pending FDA approval, some studies show that long-term use of Elagolix may reduce fatigue, painful sex, painful periods, and non-menstrual pelvic pain. I’ll continue to update this blog on new findings of Elagolix and FDA approval.
Bloomin' Uterus 