Share Your Story: Diane

Tattoo that reads "Start Somewhere"

Diane shares her Endometriosis journey with us today.  And she’d like to remind us all when life hits us too hard and we’re stuck or immobile…we have to start somewhere. One step at a time.

Diane’s Journey:  So, I’m officially diagnosed with chronic pelvic pain, recurrent peritoneal cysts, and precancerous cervical cells. I did have an exploratory lap in 2016, to remove suspected ovarian cysts. They turned out to be peritoneal, and I also had “extensive adhesive scar tissue”. Endometriosis was added to my records at that point, but I was seen at a teaching hospital. The residents that saw me and performed my surgery never sat down and discussed what they found.

I went back to work, happily unaware. I thought since the cysts and adhesions we’re gone, my pelvic pain was through. For context, I work as a CNA. 8 hours on my feet running from room to room and lifting human beings bigger than me. It took two weeks back to realize I was mistaken.

So, back at home, trying to focus on my kids, home, and health. In between the year and a half of appointments with residents, different ones with different opinions each time, I fell into a good old fashioned depressive episode. I hurt all the time, I was trying to take care of two special needs children (my daughter has ADHD, severe anxiety, and a fine motor skills delay, and my son has cerebral palsy), trying to keep up with the housework, and missing the adult socialization and feeling like I actually contributed to society.
I started working with a counselor after being diagnosed with adult ADHD and major depressive disorder. In the middle of all this, I had an abnormal pap. Went back for the colposcopy, thinking nothing of it. Not my first rodeo and usually the colposcopy came back negative. This time it didn’t. One LEEP procedure later and I was being referred to a new gynecologist for a hysterectomy consult.

I now know that the hysterectomy won’t cure my endometriosis, but it will stop the recurrent peritoneal cysts that my new DOC says are fed by my ovaries putting off estrogen. It will also drop my risk of cervical cancer to zero, as the cells are still just on my cervix.

I’m scheduled for next month. I’m having a total abdominal (darn scar tissue, again) with removal also of my ovaries and fallopian tubes. I will be in menopause at 34 years old.
I am also working through a not quite midlife career change. I’m going back to school to be a special education teacher.

So, endometriosis and related conditions have changed my course, but they’ve also pointed me towards my passion. Don’t get me wrong, I love taking care of people, especially my geriatric patients.

But I’ve worked with special needs kids for years, and now have my own personal experience to bring to the field. Teaching will be a less physical job for me, but I believe a more rewarding one also.

**

If you would like to email Diane, please feel free to do so.

I want to send a special Thank You out to Diane for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery and recovery! Please keep us posted.

download

And if YOU would like to share your story, you can do so.  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: Pam

quote: A hysterectomy doesn't resolve endometriosis.  I guess I was naive in 1999; were the doctors also?

Pam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us.

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

Fast forward to September 2018, and last week I had my ovaries and tubes removed. I was shocked to hear I had endometriosis plastering my ovaries to my pelvic wall. Now as I am researching I am reading that it is possible that the undiagnosed leg pain I have been suffering with for over 8 years may also be related!

I am not in the medical field but am pretty savvy, so much it is rare that I go in and am not asked if I am a doctor or nurse. My kids and I have had lots of issues and I have been there with them for every step.

So how could I be so ignorant on this?!!

I have seen every kind of doctor you can imagine. I take an epilepsy drug for bilateral pain on the outsides of both lower legs. The last Doctor said just be happy you have a drug that works and stop looking.

I am praying as I heal from surgery, my pain in my legs will go away.

Words of Advice:  A hysterectomy doesn’t resolve endometriosis. I guess I was naive in 1999; were the doctors also?

The Last Word:: Don’t listen to any doctor that says stop looking! I am going back to every doctor if my pain resolves, after I give GOD all the glory, and telling them it was endometriosis, and don’t forget to ask about that!!!

If you would like to email Pam, please feel free to do so.

I want to send a special Thank You out to Pam for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing recovery! And, yes, if your pain doesn’t resolve – keep pushing for answers.  They’re out there somewhere!  And if it DOES resolve…absolutely give God all of the glory.  Please keep us posted.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

download

And if YOU would like to share your story, you can do so.  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: Janis

Black and white photograph of blonde, smiling Janis

Janis was diagnosed with Endometriosis when she was 35.  Now 39, she shares her Journey with us:

Janis Oenbrink;  August 1, 2018

Endometriosis changes the lives of many, and in multiple ways.  Infertility, pain, fatigue, depression, and a multitude of other miserable symptoms encompass the disease of endometriosis.  I have dealt with this disease for years, and along the way, been diagnosed with Irritable Bowel Syndrome, anxiety, depression, ruptured cysts, etc.…. as well as been called crazy, lazy, and a hypochondriac.

Endometriosis is diagnosed during a laparoscopic surgery, and in my case, during my hysterectomy. Before that, I had 2 colonoscopies, one upper endoscopy and my gallbladder removed and hadn’t even considered endometriosis as an issue.  Little did I know, at that point, the symptoms I deal with are consistent with both GI issues and GYN issues. Since the hysterectomy in 2014, which removed all but one ovary and one fallopian tube I have had three endometriosis surgeries and in February 2018, removal of my remaining ovary and tube. I am 39 years old and surgically menopausal. I tried every birth control pill, hormone, pain medication, and home remedy possible. Through all this, I also consider myself extremely lucky because I have two beautiful and amazing daughters, and so many other endo sufferers are unable to have children. I know I am blessed beyond measure that my hysterectomy resulted in horrible reaction to a stitch and I ended up finding the surgeon who saved my life from misery. As strange as it sounds, I am grateful for the complication.   

While I wait to get my hormones under control, I pray that I don’t have to undergo another surgery for the pain. Although I no longer have ovaries, I am receiving estrogen replacement, and unfortunately, endometriosis is hormone dependent.

Dealing with endometriosis is different for everyone and is difficult to describe.  Endometriosis is not cured by hysterectomy; there is no cure. There is the ability to remove, or excise, the lesions, but there is no guarantee that it won’t come back, appear in a different place, or grow from microscopic lesions that were not completely removed. The amount of endometriosis does not determine the level of pain one experiences either. I have been blessed beyond measure to have a husband who has listened to me whine and cry, supported me through each surgery, and gives me hope, makes me laugh and loves me when I need it most.  Pain, adhesions, scarring, bloating, fatigue, and mood swings have put my life on hold some days, but more often than not; I have done my best to ignore the pain, to keep the miserable feelings to myself, and pretend that I am fine.

But, I am not fine. I am angry. I am bitter. I am resentful. I am jealous. And I am tired. Tired of living like this, making excuses and tired of being robbed of a normal lifestyle. I have spent too many hours clutching my heating pad, praying that the sensation of my organs being scraped out will disappear. I am tired of pretending. I am so tired of this that I am going to do something about it. I am a nurse and I will do everything in my power to spread awareness of this disease.  At this point in my life, my efforts revolve around being a wife and mother, FNP school, and attempting to find the right dose of hormones that will get me through this chapter in my life. It is difficult to wrap my head around the options, the side effects, and the effect hormones have on my future. Too many women suffer, are ignored, and stuck dealing with a lifestyle they do not choose. It is much more than the side effects of pain and bleeding mentioned in a TV ad. It is a life-changer.  One in ten women experience endometriosis, yet it is greatly under-researched and under-diagnosed. It is my goal and hope to raise awareness and become a voice that so many are praying for.

(Thank you, Janis, for reaching out and for being brave enough to share your story and thoughts in such a brutally honest way.  May you find the peace we all deserve.  And I applaud your raising awareness.)

If you would like to reach out to Janis, you may email her.

And she wants to remind us: Never, ever ignore your gut feeling that something is not right. You know your body best. Don’t let anyone make you feel bad about questioning your own health. Keep track of your symptoms, surgeries, successes and failures….be an active participant in your healthcare.

It May Be that Time Again…

A diagram comparing pain from August 2016 to June 2018

Oh, the thoughts you have when you’re contemplating another surgery for Endometriosis…and possibly a hysterectomy. Yes, I know it’s not a cure, but it would free me of periods and a cramping uterus. I’ve always said that if I need a third surgery, I’ll opt for a hysterectomy. I’m on the cusp of being 40-years-old…menopause is close enough at this point and my husband and I don’t want children at our age…

Last night was the eve of my transvaginal ultrasound. From my May exam, it was confirmed that I have what is suspected to be an endometrioma on my left ovary. If it’s not a chocolate cyst, it’s a dermoid cyst…which is the same reason why I went in for my first surgery in 2014…and *poof* received my Endometriosis diagnosis. And since June 7th, a new pain has manifested. A brutal pain that has reared it’s ugly head nearly every day since. And spawned me to move my ultrasound up to today. Very soon…at 11:45am, I’ll be in a chair, feet up in the stirrups, and a magic wand shoved up my hoo-haw.

Pain summary from June 2018

After thoroughly reviewing my pain and food journal, evaluating triggers and identifying patterns, and having a long discussion with my husband…I’m going to pop the question. “What about surgery?” Already. It appears I have a two-year track record for this sort of thing…2014…2016…and now 2018. That means canceling vacations and altering plans. But it’s worth it. The quality of life that excision surgery has granted me twice before has been worth it.

Then, compare my pain charts from August 2016 (right before my 2nd surgery) to June 2018. I was literally flabbergasted at the similarities…

A diagram comparing pain from August 2016 to June 2018

As I verbally vomited all of my thoughts to my husband last night, I flat out stated, “I want someone to tell me what to do. What would you do if you were in my shoes?” He looked at me…and turned it around. “Lisa, if I were an EndoSister and just told you all of this, what would you tell me to do?”

That settled it. In one fell swoop, “I’d tell you to go have a look under the hood…” And immediately I was at peace. A weird sort of peace…the resolved peace where you now have a direction to go, but the absolute upheaval of emotions of what that brings. Along with the doubts, the What Ifs, and the Emotional Rollercoaster…

“What if my surgeon says no?”

“What if they don’t find any Endo?”

“What if it’s progressed deeper into my diaphragm and they can’t see it?”

“Do I ask to keep an ovary? Which one?”

“How bad will recovery be this time?”

“How long will relief last?”

“What if it’s all in my head and I’m making a mountain out of a molehill?”

“If there’s no Endo, what IS causing my pain?”

“Maybe I have Adenomyosis and nobody knows yet.”

“What if I cause more adhesions with surgery?”

“What if it never ends?”

And as any of you fellow bloggers know: writing about this makes me feel a little better. And knowing that my words may reflect what another reader is enduring…and knowing that we’re not in this alone makes each of us stand taller.

Share Your Story: Kathryn

Quote that reads "I will never give this despicable disease the satisfaction of beating me...ever...

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.

Paper with "tell your story" written on it

And if YOU would like to share your story, I would 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.

Yours, Lisa.

Share Your Story: Shadoegirl19

Untitled-1 copy

Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

Back then (1980’s) girls my age didn’t have “female problems”. Every time I had pain prior to the ovary burst they told me & my parents everything from gastric issues to I was looking for attention.

After the true diagnosis I continued to have issues however, I was extremely blessed to be able to give birth to 3 healthy baby girls in between bouts. Throughout the years the problems continued to plague me and I had multiple procedures (ever heard of a Cauldocentisis?? OUCH), surgeries & treatments to try to stem the growth of the disease. I finally made the decision to have a hysterectomy when I was 30. They left my remaining ovary in to save me from having to take HRT or go into menopause so young.

Unfortunately that only lasted for 2 years before the cysts started again and I had to make the decision to have the ovary removed also. After that I went on to HRT and live awesomely pain free for about 12 years until I started to have problems with my hip & sciatica. Of course, I figured it was just my luck to end up with a bad hip after all the years of suffering with abdominal pain. It got really bad after I had a small car accident. Because the pain was so severe (radiating down my leg and causing numbness & weakness all the way to my toes) I had an MRI. When the doctors read it they realized I had a crushed disc and sent me off to a Surgeon. When I went to see him he asked me all the normal questions about my pain and symptoms, did an exam and went to look at the MRI once more.

He then came in and delivered some news I never expected….it wasn’t a crushed disc they were seeing, it was an Endometrial Mass between my spine & my sciatic nerve!! I was absolutely shocked! Worst part was that he advised surgery was not a viable option due to the proximity of the mass to my spine and how badly it was intertwined with the nerve bundle. He said he wouldn’t perform such a risky surgery because the chances of making it worse were far exceeding the chances of making it better.

So, after all these years & procedures, including my complete hysterectomy, the Endo wins again. Now I live with a pain patch and pain pills daily so I can actually walk and have some semblance of a normal life. I refuse to let this damn disease win! I have 3 awesome daughters & 2 beautiful grandchildren to spend time with and I won’t let some pain keep me from being happy! My only fear is that, since 4 of the 5 of them are girls, they will all suffer too. My daughters have each been diagnosed with PCOS and one of them confirmed Endometriosis so far. We knew to watch for it early so we’ve been treating it from early on and, obviously, it hasn’t affected my oldest since she is mom to the 2 grand babies. I pray that someday we can find a cure for this and stop the cycle of pain!

Words of Advice:  Don’t give up!! If you aren’t being heard by your doctor, find a new one! Look for someone who specializes in Endometriosis and get the treatment you deserve. This is a real issue and we shouldn’t be made to suffer for “being a girl”!

The Last Word: Thank you so much for giving us a sounding board and a place to offer support to each other! As women we need to lift each other up!!

If you wish to contact Shadoegirl19, you can email her here.

I want to send a special Thank You out to Shadoegirl19 for being brave enough to share her journey with us today!!  And I am so thankful that you spoke up about spinal endometriosis!  All I ever hear from skeptical readers is “it’s so rare, why do you scare people by posting about it?”  And you, my dear, are why.  There ARE women out there that suffer from spinal Endometriosis and they need to know they’re not alone or crazy. Thank you.  I am so grateful you were able to have three beautiful children and are a grandmother!!  I wish you luck in all of your endeavors.  I am glad that your daughter has such a wonderful EndoWarrior by her side.  ❤ 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: Stephany

After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis.  Two years later, she shares her story with us.

Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didnt do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.

When I was 14 we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked great and I just stayed on it until a couple of years ago. But over the years my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain.

I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month…I wished they could understand it was real.

At age 31 I went to the doctor about pain in my ovary area & I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify he has been nothing but wonderful, understanding & supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of…nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue & it worked for a year. Except that I kept ending up with multiple infections that added to my annoyance!

I asked to be refereed to another doctor. That was the best thing ever. This doctor asked me a bunch of questions id never been asked in relation to my pain. Did i have migraines? For how long? When did the cramps start? Did i always have a heavy period? He asked about my ovary issues. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparascopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds.

When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of stage 4 endometriosis” he’d ever seen. My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed, and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag. But I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.

But first I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis & makes it grow, so he needed to stop the growth before he old attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy. He said that after seeing my insides that he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.

It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.

I’m just finishing my last month of treatment and having my hysterectomy next month & I just pray it all ends there. My biggest fear is still having pain after. Because despite common belief, endometriosis can still come back after a full hysterectomy. There is no cure. This is why I blow my Facebook up with information on this disease, I don’t want ANY WOMAN going through the unnecessary.

Words of Advice for Us:  Trust your body and make yourself heard. Don’t settle for the doctors explanation, know yourself.

If you wish to contact Stephany, you may email her here.

I want to send a special Thank You out to Stephany for being brave enough to share her personal story, struggle, and victories with us today.  Good luck with your upcoming hysterectomy!!  Please keep us posted on your progress, and if you need anything before or after your procedure! We are family!! ❤ You are a beautiful, brave, and strong woman.  Thank you!!!

 

download

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.

Share Your Story: Patricia

 

IMG_2866.PNG

Patricia was only 16 years old when she was diagnosed with Endometriosis.  Now 42, she lives in Montreal, and tells her tale now.  It includes a progressively worsening diagnosis, a full hysterectomy, ongoing medical treatment, and 32 surgeries!  Despite her medical efforts and treatment, she continues to suffer with the illness.

Patricia’s Journey: I was diagnosed with endometriosis at the age of 16. It wasn’t too bad at that point, but between the age of 16 to 21 it went to stage 4. So it was decided at the age of 21 to have a full hysterectomy, thinking it would be a cure. I also had tried all the medications that were available at the time to treat it. Nothing worked not even the full hysterectomy.

From the age of 21 until now I’ve had 32 surgeries.

Nothing would stop the endometriosis and at the age of 42 I now have it on my bladder and cysts around my pelvis. I never imagined this would be a life long fight against a disease I have no control over.

When I had my hysterectomy at 21 it was soul shattering, I thought I won’t be a real woman anymore. Like Pinocchio wasn’t a real boy, I was no longer a real woman. It also affects every part of my life, my relationships, my dreams, everything I wanted my life to be. It took a while for me to accept my fate but eventually I had no choice.

Till this day I fight chronic pain and this crazy disease called endometriosis. I will never stop fighting for myself and my fellow endometriosis sisters. We also fight for the next generation of women who may have endometriosis, we fight for them too.

We are 176 million women affected by endometriosis worldwide.

We deserve a voice and a cure 💛.

Words of Advice:  You will have days where you feel like giving up, but you are stronger than you think. We must fight together to find a cure. We must also lean on each other when things become overwhelming. We are stronger together in this fight than we would be alone💛

The Last Word: I wish the medical community would take endometriosis more seriously. When we come to you for help, don’t belittle how serious our pain is. We live in chronic pain that most cannot even begin to comprehend. We don’t want pity, we just want understanding, more awareness and a cure.

If you wish to contact Patricia, you can email her here.

I want to send a special Thank You out to Patricia for being brave enough to share her journey with us today.  And those strong words of encouragement!! THANK YOU!  Wishing you luck in your future procedures and, as always, wish you relief. ❤ 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: April

img_1878

April was diagnosed with Endometriosis when she was 30, but suffered with the pain for over 18 years before she knew what it was.  Like so many of us…Now 37, she lives in Ardmore, Canada and shares her story with us today.

April’s Journey: I was born in Georgetown Ontario in 1979, my parents and I moved to Alberta when I was 2 years old. I was a shy quiet kid growing up so and I still am quiet and somewhat shy at times lol, so it amazes me I am standing here today telling you my story.

When I first started experiencing Endometriosis pain I was about 12 years old when the first menstruation cycle shown up in my life. I had very painful periods basically from when it first arrived and I was continuously told it’s normal, take Midol. I believed it so I went on through life in constant excruciating pain that made me nauseous and sick all of the time. My periods ended up quite heavy as the years went on and at age 14 I had experienced a different more stabbing like pain in my right lower pelvic area. It turned out a cyst had ruptured on my ovary. Again it’s “normal” this happens to everyone. Our family doctor had put on birth control at this time to ease/subside the pain.

I eventually stopped taking the birth control and as I got older the pain kept getting worse every month, and then ever now and then I saw clots. I didn’t know what to do except take extra strength Midol or some other over the counter drugs like Tylenol or aspirin. Nothing ever helped.

When I was in my early 20’s I was out of school, working and one day I was at my job and I remember it so vividly. I was standing at my station (I worked in a pretty large paper plant that made all sorts of forms in Edmonton) and I almost passed out from the pain that hit me in the same spot when I was 14. . I was rushed to the hospital by a coworker and the doctor said a cyst had ruptured. I was told there was nothing they could do so I was sent home.

I met my husband in 2004 and we got married in 2006. We moved from the city to the Lakeland area where he’s originally from in 2007. Like most couples we wanted to start a family and for about a year nothing was happening. We went and seen a doctor in Cold Lake voiced our concerns and I was put on a fertility drug called Clomid which was not the best idea because it caused a 4 inch cyst to grow on my right ovary which had caused me unbearable pain. I had emergency surgery June 2008 to remove the cyst, and my ovary was saved.

After seeing a couple of doctors including a fertility doctor (which was a 9 month wait) and had several tests done which included a laparoscopic surgery, we were given a 10-15% chance of natural conception but we could try IVF. We were devastated, but we decided to discuss adoption for the future.

The pain happened yet again on my right side a few months later and I was referred to the last and final doctor. He didn’t confirm it at the time but he said it had sounded like I had Endometriosis and according to all of the tests and the laparoscopic procedure I had shown that my uterus was scarred, my right Fallopian tube was completely blocked and my left was partially blocked so that was the obvious problem. I didn’t understand why we weren’t told this a few months prior. I had no idea what Endometriosis was at the time and he said the only way to live without pain was to have a hysterectomy. I believed him because he seemed to know what he was talking about. And after 18 years of living with pain I said ok because I cant live this way much longer. I went home and I was so concerned about the hysterectomy I didn’t do a whole lot of research on Endometriosis, I just wanted to be free of the pain.

A few months later after celebrating my 30th birthday I got the call that my surgery was booked. March 19th, 2010, was the day of my surgery and the day that would forever change my life, it was the day I got the final diagnosis…Stage 4 Endometriosis. The disease had reeked so much havoc inside my body my reproductive organs were a mess. My uterus was retroflexed pushing on my bowel and my fallopian tubes and ovaries were twisted. My right ovary was attached to my bowel. Its no wonder I wasn’t able to conceive.

The next 5 years or so was emotionally impairing, I developed horrible anxiety and depression set in hard. My husband was, and is still, my rock and he supported me so much through this painful journey and same with my best friend Cari , she was and is always there for me and supported me. Our friends and family knew the struggle we had been through. But no one truly knew how I felt or the emotional, painful turmoil I went through. The emotional pain my husband felt because there was nothing he could but hold me while I cried for days at a time.

I am not a religious person, but I thank god I found the women and the Endo online support group in November 2015 when I did. I wouldn’t have found my best friend April who shares a very similar story to mine. I probably would have continued to suffer alone and not be where I am today.

Words of Advice for Us:  Please ask questions, you know your body better than anyone else does and you deserve proper care and answers. We don’t deserve to suffer the way we have for many years. Periods are not supposed to be painful.

The Last Word: I want to thank all of the people in my life including my husband and my best friend Cari for standing by my side and not letting me go when I was at my worst but held on so tight when I just wanted to give up.

If you wish to contact April, you may email her here.

I want to send a special Thank You out to April for being brave enough to share her personal story, struggle, and victories with us today.  I am so grateful that you have such a loving a supportive network of friends and family, and am glad you are no longer alone! You are a beautiful, brave, and strong woman.  Thank you!!!

 

download

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.