Share Your Story: LJG

LJG was 30 when she was diagnosed with Endometriosis.  Now 33, she tells us a bit about her Endo journey and how diet has helped her along the way.

LJG’s Journey:   Always had painful first day of cycle and thought it was normal. Wasn’t sexually active till 25 and had no pregnancy scares while using little to no protection. My hubby and I decided to try for a baby so we both got checked out. He has kids and his sperm was fine. My gyno suggested an HSG test. Did it, no pain which is odd cause I heard horror stories. One of my Fallopian tubes was blocked. Shortly after I had painful sex, I couldn’t walk well for days (I think he hit a cyst). Went to a different gyno cause the other didn’t seem to have urgency. He found an infection due to the dye that got stuck in the tube from the HSG test. We went to a fertility specialist and suggested a laparoscopy to see if it was endo and said I have a higher chance of getting pregnant if the damaged tube is gone. At that time I found out my mom has endo (I knew she got a hysterectomy when I was 4 but didn’t know why).  He did the lap, removed scar tissue, several chocolate cysts, and one Fallopian tube. The best chance was within 6 months. This created issues with my hubby and I, planning intimacy and heartache every month. I started to have more pain each month. So I turned to support groups online and learning more natural things I can do. I tried one month drinking wine with dinner and eating whatever I wanted, dairy, gluten, sugar, processed crap and soy. I was in the worst pain. So I cut out alcohol fast and tried to cut back on everything else. Less and less pain. All this took a year going from one doc to the other. Changing eating habits is a process I’m still learning and fail at 3 years later but this last cycle I didn’t take any pain meds!

Words of Advice: Try a diet that works for you and keep at it! I cut out alcohol, cut down as much as I can on processed food, soy, animal products and gluten. When I do eat animal products I do organic, grass-fed type of products. Learn more about GMOs and what the animal eats is what you’re eating. Add things to your diet like turmeric (natural aanti-inflammatory spice in Indian food) and tart cherries! I drank a couple shots of tart cherry mixed with dark cherry juice the day before and during my cycle and pain decreased. I have also started to juice: mainly beets, carrots, celery, apple. Sometimes I put in pear or blueberries. Trying different period products, I tried a couple brands of organic cotton tampons and pads at the same time cause my flow was heavy. Some organic tampons came apart easy so I got nervous and tried the diva cup. I only do it in the beginning now but the results are amazing. My flow when from heavy to a medium to light flow. (could be a mixture of cup and healthy eating).

The Last Word: This month I’ll be 34, my hubbies ex is giving birth any day to another child. I used to feel crappy cause she could give him a kid and I couldn’t. I haven’t looked into seeing if my other tube is blocked so there could be a chance I could get pregnant. My hubby and I have talked about adoption and ivf and just this past week I finally feel like that option is an option for me. There is hope! Things don’t always come on our time or the way we expect.

I want to send a special Thank You out to LJG for being brave enough to share her journey with us today!  Best of luck maintaining your diet, finding what works best with your pain, and your ongoing efforst with your hubby for a child!    ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Share Your Story: Amanda

Amanda learned she had Endometriosis when she was 27.  Now 33 years old, she shares her story with us.

Amanda’s Journey:   In mid 2011 I started to have pain in my lumbar area, down my butt and thighs. (Sciatica). I thought it was a pinched nerve cause I broke my back in a car accident in 2007 had a fusion and found a lot of issues with the spine. Every period I had the symptoms, the pain got worse. Seven months went by. My primary didn’t listen to me thought I was exaggerating. Because I am young I should be fine. On the 7th month, the pain got really bad. Constant throbbing and sharp radiating nerve pain from my butt to my toes. I could not sleep and was pacing all night in agony. I was still working and side note I didn’t call out once and I was a cashier at a gas station. So I had to be on my feet 8-10 hrs a day. Strong chicca. I was getting ready for work and I kept laying down and trying. My stomach was so swollen and I realized I haven’t urinated for 2 days. It took my mom and husband to convince me to go to the ER. They removed 700cc of urine. They found a blot clot in my spinal cord and a mass. Lumbar area and clot was in the thoracic area. Was in the ICU for 3 weeks. I have permanent damage for not listening to my body. The nerves never recovered for being crushed. I have neuropathy pain all the time. I did hormone therapy for 6 months after first surgery but the mass grew back again and this time I lost control of my urine and bowels. I had to have surgery again. This time I learned more about my condition. UCSD hospital did a case study about me. Since the cancer is rare and even more rare in the lumbar spine. I am currently getting Lupron injections to control the mass from growing. This is my 4th round of Lupron. I don’t have the bad pain but I feel it more and more. My oncologist did not want to do radiation because he has never done it on this type of tissue and in this area. So I am stuck with having a wall of tissue stuck in the nerves and possibly grow and grow. So I have been truly scared to go paralyzed. My life has changed, I am not very active like I use to be. I can’t walk long or even sit. I can’t lift anything. I use to run upstairs not now it takes me forever because lifting my upper body is to heavy for my legs. I am very weak. I use to cry a lot. But now I am getting stronger and not let it control me anymore. It’s hard.

Words of Advice: Keep being positive, dont’ give up.

If you would like to contact Amanda, please feel free to e-mail her.

I want to send a special Thank You out to Amanda for being brave enough to share her journey with us today!  Best of luck with your ongoing treatment!    ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Kathryn

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Kathryn was diagnosed with Endometriosis when she was 30 years old.  Three years later, she found our blog and wanted to share her story with us.  It’s a heartbreaking and devastating tale, but one many of us can relate to.  And she will continue to hold her head high, undefeated.

Kathryn’s Journey:   I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.

Words of Advice:  Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!

The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊

If you would like to contact Kathryn, please feel free to e-mail her.

I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today!  You are NOT alone in this, and you never will be again.  You have my e-mail address…and I’ll forward you my phone number.  Please feel free to use both as often as you wish.  Much love.  And sending hugs and smooshes your way.   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Julia

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Julia was diagnosed with Endometriosis when she was 15 years old.  Now 17, she shares her Journey with us and a few great words of advice.

Julia’s Journey:   At 14, my periods suddenly became extremely painful, to the point where I was vomiting with them because the pain was so bad. I was put on birth control, but that only made things worse as the pain began to affect me everyday and my entire life was altered. Because of that, my gynecologist at the time did a laparoscopy, but found NOTHING. She did not have the training or tools to detect endo in someone as young as me. Feeling defeated and knowing that something was indeed wrong with me, I pursued all of the medical opinions I could with the help of my parents and family. A colonoscopy, endoscopy, multiple ultrasounds, countless medications, and much frustration later, I finally found a pediatric fertility specialist who performed my second laparoscopy and definitively diagnosed me with Stage I Endometriosis. I was so, so, so relieved! However, I had no idea what was in store for me once I received a diagnosis. Now two years later, I am still in pain everyday and battle endo every step of the way as I try to live a semi-normal life. However, I have learned to manage endo to enough of a degree that I can enjoy things and live the life I know I deserve.

Words of Advice:  That being said, don’t ever, ever, ever be afraid to get a second opinion. I can’t tell you how many doctors I’ve seen throughout my endo journey. The number is honestly probably above twenty. However, this has helped me immensely because it led me to official diagnosis and a lot of different treatment for endo. If I had not pursued opinion after opinion, I would not be where I am today.

Julia writes her own blog, The Endo Girl Blog. It’s full of wonderful tips on dealing with Endometriosis, her own experiences, and a lot of fun ideas for Endo girls.

I want to send a special Thank You out to Julia for being brave enough to share her journey with us today!!  Wishing you the best in your medical care and I’ll be following you   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Dannielle

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Dannielle was diagnosed with PCOS when she was 16 and Endometriosis when she was 18 years old.  Now 19, she shares her Journey with us.  And she is a loud voice for self-advocacy!

Dannielle’s Journey:   Hello, my name’s Dannielle and honestly even though I’m young I kinda figured there had been something going on with my body.. in addition to endo, I was diagnosed with Polycystic Ovarian syndrome at 16 as well. The initial process was confusing before I had ever been diagnosed with either PCOS or endometriosis, because after seeing multiple medical professionals, some were saying it was PCOS, and some mentioned endo, only to later on figure out I have both diagnoses now. I still remember what the hardest part and can still be frustrating is having the doctors listen and feeling like your voice is being heard. At 14 is when I started thinking “something wasn’t right”, but was told “you’re too young to have any issues.” Which is entirely false. These things in addition to having crippling depression and anxiety, make me feel like I’m burdening others and should be embarrassed to tell others about my endo and PCOS, but I’ve realized that I shouldn’t be scared, that I– or any of us chose to have this diagnoses!

Words of Advice:  One of the biggest things I will always say is, Advocate. If you have a concern, or something you feel as if it isn’t being addressed, tell your doctor. If you don’t tell them how bad your pain or symptoms really are, they won’t help as effectively at least with my experience.

I want to send a special Thank You out to Dannielle for being brave enough to share her journey with us today!!  I know how scary, and liberating, it can be!   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Mandi

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Living in Atlanta, Mandi was suspected of having Endometriosis when she was 32-years-old.  And she recently had surgery with Dr. Sinervo to confirm those thoughts.

You can read Mandi’s journey on her blog, “Patiently Waiting, My Endo Journey.

Words of Advice:  Advocate for yourself. Don’t just listen to your doctor because they say something is true. Do your research. Unfortunately, endometriosis is one of the most misunderstood diseases out there and there is a lot of wrong information doctors are giving women. Do your research.

The Last Word: Thanks for allowing me to tell my story!

I want to send a special Thank You out to Mandi for being brave enough to share her journey with us today!!  Wishing you all the best with your surgery and recovery! ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Carole

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Carole was diagnosed with Endometriosis when she was 25 years old.  Now 65, she shares her Journey with us.  And quite a journey it’s been!

Carole’s Journey:   Suffered excruciating pain ever since I started my periods at age 11. Trying to describe the pain, I can only compare it to a vacuum trying to suck my uterus out of my body. I could not even walk, and everybody (even my parents) thought I was faking…Until the day I did not go to a dance because of the pain. I saw a few doctors, who all ordered D&C. Finally (thru a friend’s recommendation to her gynecologist) I was able to get an appointment to see her gynecologist at age 25. He suspected it was endometriosis and ordered a laparoscopy and it was confirmed. Finally there was a reason and a name for all my pain! I was prescribed the painkiller “Talwin” – very strong and I was somewhat “stoned” and even “hallucinated” – which rendered me unable to function for 1-2 days each month at work (better than 7 days of pain without it). Married, I was trying to get pregnant, and even with fertility pills I could not. Exploratory surgery found I had endometriosis that had squished both my ovaries and a lot on my uterus: One ovary removed; then second ovary removed; and finally uterus removed. I was 27 years old. Although most of pain was gone I still had pain with my bowel. At 35 years of age I had 6 inches of my bowels removed as endometriosis was found squishing my bowel. I was so happy to see a commercial on television that talked about it. After all those years people are finally going to believe that ENDOMETRIOSIS is real !!! Thank you.

Words of Advice:  Don’t stop talking about the pain and what it is. Get a referral to a gynecologist. I had the best, Dr. Elaine Joly (now retired) at the General Hospital in Ottawa.

The Last Word: Want to see the endometriosis commercial more!

I want to send a special Thank You out to Carole for being brave enough to share her journey with us today!!   ❤ Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

An Interview with a Silent Warrior.

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I know a few EndoSisters who have chosen to keep their diagnosis private for one reason or another.  During a month where many are shouting about Endometriosis to raise awareness, I wanted to remember the ones who choose to remain silent. And respect that choice.

I had the pleasure of interviewing an EndoSister who keeps her diagnosis a secret.  Not only to understand her choice and position better but to also give her a voice.  A forum to speak her peace, share in a way that doesn’t corrupt her privacy, and encourage those who also endure in silence.

I would introduce you to her, but she shall remain Nameless.  She shall remain Faceless.  Just know that she may be your friend, daughter, co-worker, or wife.

**

How old were you when you began to feel Endometriosis symptoms?
I think my symptoms started when I started my period at twelve. My periods have always been extremely painful. And I have always been scrunched up in a ball in tears.

Did you ever tell anyone then that you were having these issues?
Yes

How was that received?
I either got laughed at or told to be quiet. (That’s being exceptionally nice)

When were you diagnosed with Endometriosis?
Two years ago this past February

How did your diagnosis come about?
Doctors found a large cyst on my left ovary from an MRI then confirmed with two follow up ultrasounds.I had surgery to get it removed. The cyst was a chocolate cyst.  When my doctor came to talk to me after I woke up from surgery, she told me I had Endometriosis.  She also said that she had never seen so much endometriosis in someone and that it was everywhere.

How did you feel when you learned you had Endometriosis?
Not surprised, and a little relieved. It made sense why I have been in so much pain. The past few years the days without pain were less than the days with pain. After so long I just got used to being in pain all the time. Continual pain is normal.

But it was a huge weight lifted off of me knowing that I am not some weak ass pansy who can’t handle shit.  (Refer to the question three about how my pain was received).

Are you ashamed? Embarrassed? Angry? Confused? All the things? Which and why?Ashamed, no. Embarrassed, no. Angry, yes. Confused, no. Sad, yes. Frustrated, yes. Alone, sometimes. And so many more emotions. Some days are better than others. And some days I want to crawl into a dark cave and just cry and cry and scream (these days are few and far between).

Have you told your friends, family, or co-workers about your diagnosis?
Only my EndoSisters here know as well as 4 close friends. Two coworkers know I had abdominal surgery and one of them knows it was to remove a cyst, but neither of the coworkers know my Endo diagnosis. My family and other friends do not know.

If not, why have you decided not to tell people?
I have not told my family or my friends for one reason I still don’t feel comfortable even saying here. I also haven’t told my family because of my response to question number 3. I have not told three of my close friends because: 1) I know 2 of them can’t keep a secret. 2) the one that can keep a secret, has never been supportive of me when I talk about my pain and how much I hate it. She’s not outright mean, just dismissive about it. She also would not agree/support the reason I am not saying here.

How were you able to find EndoSisters? And how did it feel being able to connect and share with them?
I have a friend with Endometriosis and she directed me to Bloomin’ Uterus. To say it was difficult to open up to my friend does not even begin to describe what I was feeling and going through. (As a matter of fact, answering these questions is taking me hours and a whole lot of fucking tears to get through).

I had two friends offer to help take care of me when I told them about my surgery. One ended up with the flu the day before my surgery, so only one was able to help take me to and from the hospital and then spend two days with me (including my surgery day). I took 1 day short of two weeks off work, so I took care of myself the rest of the time. I contacted my friend with endometriosis two days after my surgery (through Messenger while pretty high on pain medication). I was in tears, frustrated and feeling completely lost and alone. I don’t think she will ever truly know how much she helped me that day and the extraordinary supportive woman she has been since. I would not be where I am today without her warrior-ness.

I have been able to connect with other ladies in the support group and they have been so incredible and encouraging. I get to talk to some ladies on a daily if not weekly basis. They make my days so much brighter.

I see what so many other ladies talk about in our support group and it kills me that they are going through this same shit. But everyone provides such support and love and understanding. These ladies are the best.

Sometimes when I do feel alone, I just go to our support group and read. And sometimes it helps a little and sometimes it’s like getting the huge bear hug I need. Even a heart or a like to a comment I make.

How has the silence affected you?
It sucks balls. Sometimes. But most of the time, I know it’s the right choice and I am comforted in this decision.

Do you think you’ll ever tell others about your illness?
No. A significant other maybe. But I find that terrifying. And yeah, yeah my boyfriend, husband or spouse should support me blah, blah… The thing is… You don’t know. You don’t really truly know until you have been put in this situation.

How do you think your announcement will be received?
One, I’ll be looked at with pity. And I fucking hate that shit. Two, everyone I haven’t told will be hurt that I kept something from them and they probably won’t trust me in the future. And they will probably think that I’m hiding things from them. Three, I will be told that it’s my fault that I brought it on myself for hating my periods and if I just accepted the pain I had from the beginning this would have never happened… Power of attraction… blah, blah…

Is the reaction of others learning so long after your diagnosis part of the reason for your silence?
Nope. Once I found out, I never planned on telling. (Even my friend I opened up to in the first place.)

What would you tell other women who have decided to keep their diagnosis a secret?
You’re not alone. You’re just not. Whatever reason/s you have for keeping silent is/are the right reason/s. You don’t need to justify yourself. Not to yourself. Not to anyone else. I don’t care if it’s your family, spouse, your best friend, your boss, who the fuck ever. YOU DO NOT HAVE TO TELL ANYONE IF YOU DON’T WANT TO.

How can your EndoSisters help you?
Just keep doing what you’re doing ladies. You are amazing and have helped me more than you can possibly know.

Is there anything else you’d like to share?
Nope.

**

What a beautiful and eye-opening experience for me.  I’ve always been an over-sharer and cannot imagine enduring this illness in silence.  But I love and honor my EndoSisters for their decisions to remain quiet.  Whatever those reasons may be.  If you have chosen to keep silent, stand by that decision.

Never let us guilt you or judge you into divulging your secret.

And know, like she said, you are not alone:  “You do not have to tell anyone if you don’t want to.”

To all those who endure and suffer in silence, you have my respect and love. Consider yourself gently hugged from afar.

And, to the Warrior who allowed me to interview her, I cannot thank you enough.  You are so incredibly strong and brave and have been an incredible presence in my life, and the lives of other EndoSisters.

 

Share your Story: Genevieve

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Genevieve felt the symptoms of Endometriosis since her first period.  She was diagnosed when she was 21 years old, and is now 28.  She shares her story with us today.

Genevieve’s Journey: I thought I was dying.

I was on a family holiday, lying in our camper trailer bed with my mum and my little brother. I was 12. I think my poor mum, who was a nurse, was at her wits end by sunrise, and had given up trying to diagnose me after an hour or so. The pain in my abdomen had me convulsing, crying and curled up into a ball clinging my legs to my chest for dear life while I rocked back and forth. I was given some Panadol, and while my mum and brother proceeded to sleep, I made the cold, windy walk up the hill to the campsite toilets over a dozen times throughout the night thinking, “This is it. I’m going to be one of those news articles, where a young girl dies a mysterious death in a caravan park”. I remember sitting in the showers in the middle of the night, on my thongs (so I didn’t get butt tinea from the shared bathroom) and just feeling like I should have been at a hospital. But I was so desperate not to cause a scene or be put on to a helicopter in front of the entire Robe Caravan Park.

Alas, I was not dying. I was ‘becoming a woman’. Well, I tell you what, my mum was extremely excited (and relieved) when I informed her of the milestone the next morning, but I, on the other hand,  was mortified and equally terrified at the thought of this happening on the regular. If this was to be normal, I was pissed off that nobody warned me that ‘period cramps’ felt like hot lava and barbed wire having party in my uterus. Over the next six or so years, I missed a fair whack of school, wrapped up on the couch with hot water bottles and blankets, and a plethora of pain medication – much to the confusion of my parents who wondered how I could possibly be in that much pain. I skipped classes regularly to go and hide in the change rooms so that I could lie on the floor in the foetal position and try and survive the rest of the day.

For the next 10 years, I was assured that this pain was normal, and that all girls go through it. I was admitted to hospital twice with ‘suspected appendicitis’ when in actual fact, it was just a period. Lucky old me also didn’t have to wait a precise 28 days. Oh no. I was blessed to have 10, 65, 4 or 27 day cycles. They were never normal and they were never short. Because of this, teachers didn’t believe me when I would tell them what was going on – “you used that excuse the other week/day” they would say. I suspect (sorry mum) that my parents also thought I was just piking out of school most of the time.

At one stage in my life, I even had a boyfriend who laughed in my face when he saw me fall out of bed after rolling around in agony whilst howling with tears. That same night I was having difficulty seeing clearly because the pain was, literally, blinding. I could barely walk, yet I was told to drive myself to the hospital while he begrudgingly slept in the passenger seat, because “calling an ambulance is a bit dramatic, don’t you think? I will go, but for the record I think you’re overreacting”. So I did (this was also before I grew a backbone and some balls – not literally). Word to the wise ladies, if this is something you are facing in a relationship, kick them to the curb! Even typing this out makes me mad.

Now, before this story gets any darker, I will stop with the descriptions. I’m sure you get the picture. There were a lot of times where this wasn’t an issue and I got to live a normal life. I am in a far better position than so many other Endo Warriors. For that, I am beyond grateful and humbled.

However, pain that stops you from living your life and carrying on with normal day-to-day activities isn’t normal. Let me just repeat that:

IT’S. NOT. NORMAL. Don’t let anyone tell you that you are overreacting. Or that it’s a normal part of being a woman.

Unfortunately, “there is delay in diagnosis of between 7 and 10 years. This is due to girls and women normalizing symptoms as well as doctors normalizing symptoms when women do finally seek medical assistance. Early diagnosis and treatment reduce the long term impacts of Endometriosis and frequency of invasive treatments and fertility treatments. Raising awareness is the first step to reducing the delay in diagnosis across all age groups. Education about menstrual health, what is normal and what is not is vital in younger age groups to break the current cycle of delay in diagnosis and flow on affects for the next generation (Ballard, K. Lowtan, K. Wright, J. 2006 & Dessole, M. Benedetto Melis, G., Angioni, S., 2012)” (https://www.endometriosisaustralia.org).

I hope that one day, more open and honest discussions about periods can happen, and help is offered to girls at a much younger age. This March is Endometriosis Awareness Month, and I plan to be involved in this in any way that I can. We need to raise awareness of this chronic illness, so young girls like me don’t wait 10 years to get help.

If you look at my more recent Endo situation, this is where I am at:

My current varying symptoms include extreme pelvic pain, severe back pain between my hips (which gets far worse if I eat any gluten or stay seated for long periods of time). I get shooting pain down my legs, experience hot flushes, night sweats, anxiety and extreme fatigue. Add on to this more than occasional bouts of IBS, sore breasts, headaches, irregular bleeding and emotional fluctuations that I can never keep up with. I have suffered with these symptoms for over 15 years and not just when I have my period (if only it were that simple!). I have had two laparoscopies, my first when I was 20 and the Gyno ‘found nothing’. Fast forward 7 years to my second surgery, where not only was there Endo, it was so severe that my surgery was extended from the expected 30 minutes to almost two hours, where they burnt off lesions throughout the left side of my outer uterus lining, and cut out adhesions on the right side which had fused my bowel to my abdominal wall. I still remember seeing the doctors face –I wish I was a mind reader- I could have sworn he was surprised and almost felt ashamed that he had initially said to me: “there’s probably nothing wrong with you if nothing was found in your first laparoscopy”. Oh how wrong he was, and this was said to me by an Endometriosis specialist. In the almost two years since this surgery took place, my back pain, digestion troubles and fatigue have only increased. The one upside is I finally found a new and fantastic Gyno who has treated me and my Endo from every imaginable angle. I am now in a position where I am managing my pain with a combination of nerve-blocking medication, pain relieving suppositories (fun!), and being put on the FODMAP diet which eventually led to me finding out a huge trigger for my poor operated-on-bowel, was gluten.

So, aside from saying goodbye to three big loves of my life: pizza, pasta and bread, things could totally be worse, and I know right now I am doing ok, but tomorrow could be a totally different story. I have started my blog to start sharing my story, and help get word out there.

 I am only one spokesperson for women with Endo, but I feel like I am not alone in saying most of the time, we just want to be understood and accepted, and our pain and suffering to be acknowledged appropriately. This March is Endometriosis Awareness Month, and I will be wearing yellow every day to show my support and involvement. 1 in 10 women have Endo- think about how many women you know. Chances are more than a few of them have been suffering in silence for a long time. I honestly believe that if we want things to change, for young girls to get diagnosed and cared for earlier, then it’s the responsibility of everyone, to recognise what Endo is, and what toll it takes on women all over the world. How will you show support for women with Endo this month or in the years ahead? What will you do differently?

There are so many resources and links with information online, but the other thing that can be really informative- is to ask us, the women with Endo the questions. We live with it every day, and when someone shows interest or concern, that’s one more person who is on their way to understanding and accepting and helping us see some change.

 xx

If you wish to contact Genevieve, you may email her here.  Or you can follow her blog, Finding Fortitude here.

I want to send a special Thank You out to her for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you have found a Gyno who takes your pain seriously and is attacking it head-on!  Your words of encouragement, your positive attitude, and your passion – it’s contagious! You are a beautiful, brave, and strong woman.  Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.