Stories of Others

Share Your Story: Chica B

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Chica B. was diagnosed in her 30s.  Now in her 50-somethings and living in Rock Island, Illinois, she wanted to share her story, and advice, with us.

Chica B.’s Journey:   Hi, yes I was diagnosed with endometriosis in my 30’s. I tried two different birth control pills due to my painful periods. Didn’t work. Then it seems that working out regulated my periods, less pain and I enjoyed my jogging, Tae Kwon Do classes, and volleyball activities. Then due to a bad divorce and the aftermath, I stopped exercising regularly or at least as I used to do, and my body started to get into the pain mode. Stiff muscles, lower back and leg pain, tailbone pain and rectum cramps. All this crazy symptoms always around my period. To be exact two weeks before.

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Share Your Story: Devon

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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.

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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.

Share Your Story: Susie

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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.

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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.

Share Your Story: LJG

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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

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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.

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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: 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.

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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.

An Email from Christina

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Last week was a very difficult week for me.  I had been suffering from Endo pain, PMS, and cramping since April 30th.  My period started on May 2nd and lasted until May 8th.  Of those 10 days, eight of them were incredibly difficult.  I want to say “unbearable,” but…with proper pain medication, heating pads, comfy clothes – it was bearable.  I may not have been functioning very well, but I didn’t die.  I’m still here.  And the pain has ended…for this round.

Thank you to everyone who shared words of encouragement and support, especially after my Feel Good Friday’s post…which I don’t even remember writing. Ha!

But I wanted to share a series of emails with you today that I received during that time.  I found it uplifting during the hardest days, and it helped me (and will continue to help me) hold onto hope.  Christina has given me permission to share these emails in case it also grants you, or someone you know, much-needed encouragement and hope.  I look forward to meeting her.

May 3, 2018, 10:07 p.m.:

Hello Lisa,

I hope you are doing well.

I had the pleasure of reading a page in your facebook page about your journey with endo and your creation of a support group.   I was involved in one many years ago myself, and admire the leadership it takes to start one from scratch yourself.

I am a 50 something year old survivor of Stage IV endo who also lives in San Diego.
I endured 3 surgeries battling this disease, 1 of which was 11 hours, was in hospital for 16 days with that one,  and I lost a large part of my colon, among other bits.

I remember all too well the isolation at work and missing so many special events with family.  The “excuses” that I made to excuse myself from many social situations due to pain and food intolerances that some people rolled their eyes at because of their ignorance of me not dealing with “period pains”….  I remember the intense physical pain, the fear of not being able to be “surgically or medically repaired”, the depression and despair from hopelessness and helplessness, the pain with sex, painful bowel movements, the flood like bleeding and shooting pains down my thighs constantly,  the food allergies and IBS, the shame of not being able to bear children or function like my coworkers, I could go on, but I think you and all those with this disease can relate.

I am so glad to see you reaching out to learn from and help other woman struggling with endometriosis and all its cascading issues to connect with one another and support each other.

It is huge to be able to talk to someone who understands your journey.

Mine was a very rough 12 year ride, BUT I am fully well now with NO pain, and have a good life with my hubby of almost 30 years.

I am a certified Zumba instructor, a creative being, and enjoy meeting people and sharing my message of restoration.

I am happy to share my message of hope to all woman and young girls, dealing with this disease who feel worthless and hopeless.

My message to you is don’t give up!  There is hope!   I am evidence of it.

xxx Christina

May 4, 2018, 12:25pm:

Hi Christina!

Thank you for such an incredible email!  I love it when local’s reach out 😀

I am SO happy to hear you are no pain-free and living a wonderful life with the Hubs! May I share your email on my blog and on our private Facebook group?  I really needed to hear it today, as I’ve been going through an incredibly painful last seven days. ❤

Thank you, Christina.

PS – Where do you Zumba?  I’ve put on a few extra pounds due to my inactivity and would love to shed ’em in a fun way with someone who knows what we go through. ❤

May 4, 2018, 3:34pm:

Hi Lisa,

I was teaching Zumba in a dance studio I rented in Del Mar, but I live in Scripps Ranch now so I am speaking with a dance studio up the road from me about renting from them twice a week.

Zumba is fun and doesn’t feel like a chore. I am not a gym rat and I don’t like treadmills (my add mind goes mental with one direction for 30 mins!)

Please do feel free to share our communication/conversation on your site. I am glad my email encouraged you and I hope it does for others as well.

My first surgery was 5 hours, next was 11 hours with a bowel resection, 3rd was around 2 hours for hyst. Each time my organs were glued to each other like a ball of wool (adhesions)…

I am sorry you have been having pain, and I do hope this pain phase passes soon.   Red Raspberry leaf tea used to help me, and DRY (soy free) Vitamin E Avoid Vit E oils which often are soy based – used to help me a lot.  I took 400iu a day  (Vitamin shop sold the only Dry form of Vit E when I took it ). Hot water bottle wrapped in a pillow case cover so doesn’t burn your skin helps to relieve the muscle pain.

Stay away from soy. It is the enemy of those with endometriosis. I always avoid soy in any form – flour, tofu, fillers, oils.  This article includes many of what I figured out I should take years ago that helped me

I remember that was so hungry for hope when I was at my lowest low.  I had many lows, but one very memorable one…

One really desperate time in my bedroom, I was rolled up in the center of the bed in a fetal position, and through heavy sobs I actually prayed and said to God that if He wasn’t going to heal me, to just let me die…

I mean that’s pretty scary mentally that I got to that point.  But many girls do.  Some young girls even commit suicide in despair, especially after hysterectomies when they are unmarried, and know they will be unable to provide children to a future spouse.

Some healthy marriages even break apart because of the constant drama that endometriosis brings to the party.  Those guys forgot the “in sickness and in health” of their vows!

It’s truly heartbreaking!  And even thinking about how I felt,  knowing these are common thoughts others feel, still brings tears to my eyes.

Anyway, my breakthrough came very soon after that desperate prayer!  I was transformed into the new me! Hopeful, rearing to go again.

I had that third and last surgery with Dr Redwine in Portland, Oregon in 2010, and he MIRACULOUSLY found NO ENDOMETRIOSIS!

A BIG mystery since it was noted that they had to leave a substantial amount of endo lesions on my already resected bowel, on my previous post op report (by a Dr he personally knows very well in Atlanta – Dr Albee another expert)…

Only fibroids were found outside my uterus, which I’d instructed him prior to going under anaesthesia to just remove my uterus, since I had decided I was done with trying to have kids unsuccessfully.

I was shocked at hearing this excellent news – I was ecstatic! A miracle?  Also lifestyle of avoiding ALL soy, eating organic and only grassfed meats among learning A LOT about health issues and foods etc.

I am VERY grateful for Part 2 of my life! Even 8 years later.

My personality is a go getter. I am a hyper Italian woman! J And this disease KNOCKED me to my knees!

The good thing it taught me was a deep and real authentic Compassion to those who suffer in ANY capacity.

My heart aches when I see ANY suffering.

This Endo experience journey – as rough as it was, brought that type of kindness to my heart and soul in an experiential way that cultivated love in me, that I would likely have never developed without this journey.

In life most of what we learn comes from EXPERIENCING things – good and bad.  We don’t ENCODE information as well just “reading” about it, as much when we actually LIVE it or DO it…So to FEEL and Experience pain makes the issue or lesson, very relatable and tangible.

This pain stretched me way beyond my comfort levels in many ways.  As an independent “Type A”, go getter, who didn’t like to ask for help, or admit weakness – it forced me down a path of needing help – of being vulnerable to my hubby and family….and MANY more people I didn’t want to be “weak” around – like a few non compassionate, catty colleagues.

My hope having gone through the transformative Endo fire is that it will benefit all those I interact with my life in some way, by not just exercising empathy, but heartfelt compassion, that’s come from a place of a shared pain experience.

Please do share this and the previous email.   Women need to know healing is possible.  I am restored and rearing to live again!  I stand a high, on the mountain with my arms raised up in victory – where I hope you too will be someday soon too!

Maybe we can meet for tea or coffee sometime soon if you would like, or zumba.

Much love and healing to you.

Warmly,
Christina

**

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.

Paper with "tell your story" written on it

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

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