Share Your Story: Chenille

Woman in yellow shirt and sunglasses

Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.

Chenille’s JOURNEY:  

I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.

I thought my battle was over. Boy was I wrong.

Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.

I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.

I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.

After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.

So where does that leave me? I am at a loss. I do not know where to turn.

My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.

I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.

I hope that by sharing this someone will help, in any capacity.

WORDS OF ADVICE:  

You As hard as it is to do, stay in the fight.

If you’d like to reach out to Chenille, you can email her.

I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.

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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: N.

A quote that reads I was happy that finally I have my answers, but I was lost

Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.

N.’s Journey:  

Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.

My father used to tell me to go to a gynaecologist but I used to think that it’s “normal”. I tried all kinds of home remedies but nothing worked. Every month, the pain was increasing. I was so done with all this that I told my mom that “I need to go to a gynaecologist, I need answers. It might be normal but I need this to be told by a gyanecologist”. My mother was still skeptical about going to a gynaecologist because she felt that they might give unnecessary hormonal medications.

Anyway, I was lucky that my first gynaecologist suspected endometriosis and told me to get ultrasound done and then she confirmed it. I was happy that finally I have my answers but I was lost. Later, I took dienogest for 1 year and then for 4 months I took Lupron injections. There was very less reduction in the size of cysts. My gyne told that I need to get my laparoscopy done which will happen in next 6 months.

In India, this is something which no one talks about and I wanted to normalize it and hence started this account.

Words of Advice:  

My only advice would be that stay strong and be positive. You’re more than endometriosis !!

I want to send a special Thank You out to N.for being brave enough to share her personal story, struggle, and victories with us today. And all of us wish you the best of luck with your upcoming surgery! Please keep us posted on the results and your recovery.

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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.

Feel Good Fridays

Happy Friday! I hope you’re doing well. Physically and mentally.

Today’s quote is about knowing your own body, your limits, your aches and pains, your abilities and disabilities. And honoring all of it.

Don’t do more than you’re capable. Take as many breaks as you need. Don’t be afraid or ashamed to say “no” to an invitation or task if it’s too much.

“Those who connect more frequently with their needs and are in constant conversation with their own beings, they can establish a parameter of what kind of workout and effort must be applied, of what amount of energy disposed and to be utilized, it will serve many times as a thermometer for those who listen to their bodies needs and feel what the internal thermostat is saying.” ~Ana Claudia Antunes

Always know and honor your body, inside and out.

And be well. Much love to you.

My 5th Endometriosis Excision Surgery

A drawing of a uterus, ovaries, and intestines.
Commissioned artwork by Sarah Soward

What an incredible Journey leading up to my fifth surgery!  Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.

A medical folder with "Surgery # 5" written on it

The Hospital

Due to safety measures of C-19, my Mum wasn’t able to join me for this surgery and recovery.  My husband was only able to drop me off at the curb of the hospital and I had to walk in alone. I didn’t see him again until he was picking me up to take me home.  It was a surreal experience. No piano player to greet me in the lobby and two checkpoints to pass with Covid questions, but I knew I was in good hands and the time passed super-quickly.

As usual, the hospital staff were incredibly kind and compassionate.  There were even a few familiar faces from prior surgeries.  Scripps Memorial Hospital in La Jolla really does make me feel like a part of the family.  And it made me feel far less alone while I waited.

The two-hour time window between check-in and surgery flew by. Forms, questions, answers, IVs, talks with surgeon, talks with the anesthesiologist, talks with OR nurses, talks with prep nurses. Before I knew it, it was time to roll on back.

One of my favorite questions to ask before each surgery: “What music will we listen to in the OR?”  The option for me to choose is always given, but I default to the surgeon’s choice. This time (and always?): “Chill” station.  Perfect.  So the last thing I remember before taking that surgical nap: being wheeled into the OR, introduced to the rest of the OR staff, and after a few laughs and getting positioned on the operating table, a gentle whoosh of fluid through my veins (I can’t remember for the life of me what the anesthesioligst said before injecting the magic juice), and waking up in recovery.

I always wake up freezing cold. So the nurses were wonderful and turned up the heat on my air-blanket. I’ve GOT to get one of those for home. Ha!  Then I fell back asleep, woke up later, and began the transition from naptime to going home.

The timeline?  I arrived at the hospital at 5:15am, and was wheeled to the OR around 7:20am.  Surgery began at 7:50am and the report was dictated immediately after at 9:47am. My surgeon called  my husband at 10:20am to discuss what he found.  The nurse called Jim around 11:47am to let him know I’d be ready to go home soon, and we made it home at 1:00pm.

The Surgery

Text from operation report summarized below

Get on to the nitty-gritty already! I’ll include images of my official op report, followed by my (untrained) laymen explanation. All the learning!

Dr. Mel Kurtulus was my surgeon and Dr. Chandra Spring-Robinson was the Assistant Surgeon. Both are from San Diego Women’s Health and I cannot speak highly enough of them, both for my surgical care and for my regular gynecological needs and Endometriosis symptom management.

If you recall, I had a bowel surgery in 2018 and have rocked a 2-inch vertical scar beneath my belly button. In order to avoid any complications with scars, my surgeon decided to open a port and take a peek under the hood through an incision beneath my left rib cage rather than his usual route (through my belly button). So he took a quick look, realized that the belly button was free and clear of any adhesions, and opened up the rest of the ports: I have incisions on the right torso, my belly button, and two on my left torso.

Once properly situated, strapped in, and stirruped to the OR table, a foley catheter was placed inside my bladder. Through the belly button incision, they pumped my abdomen full of 3 liters of CO2 gas (this helps plump up the belly so they can see clearly inside).

Text from operation report summarized below

The uterus appeared normal (please remember they suspect I have Adenomyosis, which is not visible as it hides within the uterine muscles).

My bladder was stuck to my uterus and pinned there by adhesions. In the photo, it looks very spider-webby.

The right ovary had a cyst which they assumed was a benign cyst.

The left ovary was pulled and stuck to the left side of my pelvic wall by adhesions. It also had a cyst present.

Not mentioned in the report, but is visible in the photographs and was discussed at my post-op meeting, was the yellow-tinged inflammatory fluid in my pelvis. It was at the bottom of my pelvis, just floating around as loose fluid. If you’ll recall a few months ago, my ultrasound technician found “loose fluid” in the area of my intestines. I was advised that this is “inflammatory fluid” and is normal to find in instances of leaking cysts, endometriosis, and adhesions. The fluid was removed during surgery.

Text from operation report summarized below

Endometriosis lesions were found on the outside of my bladder, as well as the right round ligament, the cul-de-sac (also called the Pouch of Douglas), the left round ligament, the left paracolic gutter, and on the sigmoid colon. All of the lesions (except for the sigmoid colon) were excised and packaged up for pathology.

Text from operation report summarized below

Due to the closeness of the left ureter to the endometriosis lesions near my left ovarian fossa (the little cavity of the pelvis where an ovary sits) and the stuck left ovary against the pelvic wall, my surgeon took great care to keep the left ureter safe from any surgical damage. The left ovary and its cyst were completely removed. We had previously agreed to remove my left ovary due to ongoing pain and it proving to be a problem-child (for lack of a better term) discovered during previous surgeries.

Text from operation report summarized below

Now, back to the guts. On my distal sigmoid colon, he found a patch of Endometriosis, which he notes as “a deep penetrating cluster of endometriosis lesion.” In my post-op appointment, he classified it as a nodule of Endometriosis, and said it looked like Deep Infiltrating Endometriosis to him. Unfortunately, due to the high risks involved in cutting that deeply into the intestine without a full bowel prep and a colo-rectal surgeon on hand, he took note (and photographs) of its positioning and opted not to remove the nodule. More on this will be addressed in “The Plan” section below.

According to an April 2003 study published in Human Reproduction, Deep Infiltrating Endometriosis (also referred to as DIE) is described as “…a particular form of endometriosis that penetrates greater than 5mm under the peritoneal surface [citation omitted]. These lesions are considered very active and are strongly associated with pelvic pain symptoms [citation omitted].” Brigham and Women’s Hospital in Boston, Massachusetts says that DIE is a rare occurrence, showing up in only 1-5% of women who have Endometriosis.

Text from operation report summarized below

He then removed the cyst on my right ovary and was able to save the ovary.

He thoroughly checked the rest of my pelvic cavity and found no further Endometriosis. He freed all adhesions and restored any wonky anatomy to its rightful place.

Before closing me up, a bag was placed inside my pelvic cavity, Lefty was tossed inside the pouch, and all was pulled out of my body. YAY! Good riddance! All of the CO2 gas was expelled from my pelvic cavity. And I mean ALL of it. I had ZERO occurence of post-laparoscopy shoulder pain due to any remaining CO2 gas. NONE. Dr. Kurtulus and I refer to it as the “Lisa Special,” where extra time and care is taken to make sure it’s all out. He does it for all of his patients and one day I hope he publishes the importance of taking extra time and effort to teach other surgeons. With all the gas gone, I was sealed up.

Text from operation report summarized below

Also, per tradition, he took a look inside my bladder in search of any signs of Endometriosis or Interstitial Cystitis or anything else that should not be there. Clean as a whistle and beautifully pink.

Another surgery wrapped up. All involved are skilled at what they do. And this has been THE EASIEST recovery yet.

Photographs

Since not everyone will want to look at my fascinating insides, I’ve embedded the surgery photos at the bottom of this blog entry. Scroll down if you’re curious!

But here’s a one-month progression of my belly healing up after surgery (contains some close-ups of incisions). If you don’t want to watch it, just scroll down a little further to the next section. Although this slideshow only focuses on several days (the entire first week, then once a week after that), I actually do have pictures from every day while healing. Believe it or not, they do help me when I forget if the bandaid lasted that long, or if that incision oozed, or if “this” looks normal. I go back to prior surgery photos often. And I recommend it for your personal notes.

Pathology Results

The pathologist, Dr. Kurt Mathews, found that all of the lesions were Endometriosis. Dr. Mathews also identified the right ovarian cyst as a benign cyst and the left ovarian ovary as a hemorrhagic corpus luteal cyst: both cysts were normal; neither was an an Endometrioma. Which is great news to me. Maybe my body will behave, eh?

The Bills

As of June 29, 2020, I am still waiting to receive most of the insurance Estimate of Benefits/ itemization and confirmed payments:

  • The hospital: $89,775.18
    • This includes the OR and pathology lab fees, medications, supplies, and equipment
  • The surgeon: $5,373.00
  • The assistant surgeon: $1,368.00
  • The anesthesiologist: Pending
  • The pathologist: $671.26
    • This is payment to the pathologist for the tissue examination.
  • My co-pay: $500
  • TOTAL: $97,687.44 (pending bills still need to be added as of 6/10/20)

The Plan

My post-op went very well and all of my questions and concerns were addressed. I have a follow-up consultation on September 1, 2020. At that future visit, we will discuss any remaining symptoms of pain or discomfort. As of today (June 10, 2020), I’ve had no recurrent pre-op symptoms. Any discomfort or pain that I am having is due to the healing process of surgery.

We will monitor my post-op bowel pain. When I poop I once more have the feeling of glass shards running through my guts, which wasn’t present before surgery. Most likely, the intestines are still healing and adjusting from the laparoscopy. I was told that this generally fades a few weeks to months after surgery.

Dr. Kurtulus had already had a private conversation with my colo-rectal surgeon about the Endometriosis nodule on my sigmoid colon. If I do decide to go in for another surgery to have that nodule removed, it will likely be very similar to my 2018 bowel resection. Only the small portion where the lesion is embedded would need to be removed. I’ve forwarded the surgery photos and op report to my colo-rectal surgeon, Dr. Matthew Schultzel, for review and discussion. If after the 3-month follow-up I have had any ongoing or new pain in that area, I will have to decide then what to do.

But the plan?

  • Wait and see. If any symptoms become unbearable, go in for surgery. Hopefully it never happens. But I am struggling with the mental aspects of accepting that a deep-infiltrating nodule of Endometriosis remains inside my body and is just lying in wait.
  • Continue to maintain (and better) my diet, lifestyle, and exercise.
  • I will also continue to daily track my diet, symptoms, and any needed pain medication use. And I will bring summaries of those journals to Dr. Kurtulus in September.
  • But the biggest part of the plan? Remain positive during all of this.

Comparison to Past Surgeries

Where was Endometriosis found throughout this whole journey? How much did the surgeries cost (even if covered by insurance)? I always like to go back and compare. And, unless otherwise noted, all lesions were excised:

June 30, 2014: 2 incisions; 2.5 cm Endometrioma on left ovary; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on liver, diaphragm, between bladder and uterus, left ovary, cul-de-sac, and various locations throughout the pelvis; the uterus was adhered to the bladder; peritoneum adhered to the bladder and uterus; left ovary and fallopian tube obliterated and adhered to adnexa; cul-de-sac obliterated and covered in adhesions; and bowel was adhered to left side of pelvic wall. The liver and diaphragm Endometriosis was not removed. Total cost: approximately $71,000. Surgeon: Dr. Mel Kurtulus

September 12, 2016: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located on diaphragm, sigmoid colon serosa, right ureter, left side of uterus, various locations throughout the pelvis; adhesions were found throughout the pelvic compartment; uterus was adhered to bowels in several areas; both ovaries and fallopian tubes were clustered and stuck together; right ovary was adhered to backside of uterus; uterus adhered to right side of pelvic wall; and extensive scar tissue on bowel and backside of uterus. The liver Endometriosis lesion had disappeared and the diaphragm Endometriosis was not removed. Total cost: $93,472. Surgeon: Dr. Mel Kurtulus

July 18, 2018: 4 incisions; 2cm hemorrhagic corpus luteum cyst on right ovary; Endometriosis lesions located in cul-de-sac, small intestine, near the sigmoid colon, left ovary, fallopian tubes; the tubes were inflamed and covered in disease and were both fallopian tubes were surgically removed; adhesions were found on and near the sigmoid colon, fallopian tubes, and bladder; the sigmoid colon was adhered to left pelvic wall and the bladder was stuck to my uterus. The diaphragm Endometriosis had disappeared. The small intestine Endometriosis was not removed. Total cost: $121,669.50. Surgeon: Dr. Mel Kurtulus

November 26, 2018: 5 incisions; 2cm Endometrioma on left ovary; Endometriosis lesions located on terminal ileum (small/large intestine), cecum, appendix, cul-de-sac, both uterosacral ligaments, near the bladder, and on both ovaries; adhesions had formed on the left side of my pelvic wall, my left ovary was stuck to the left side of my pelvic wall, and my bladder was adhered to uterus; a portion of my small intestine, large intestine, cecum and appendix were all removed, totaling approximately 7 inches during the bowel resection portion of this tag-team surgery; microscopic Endometriosis was found on appendix and cecum, as well as large intestine. Total cost: $235,429.60. Surgeons: Dr. Matthew Schultzel and Dr. Mel Kurtulus

May 13, 2020: 4 incisions; 3cm hemorrhagic corpus luteum cyst on left ovary; 1.2cm benign cyst on right ovary; Endometriosis lesions were found on the outside of my bladder, right round ligament, the cul-de-sac, left round ligament, left paracolic gutter, and deeply-embedded on my sigmoid colon; my bladder was adhered to my uterus, the left ovary was adhered to the left pelvic wall; and my left ovary and adnexa were removed completely. The sigmoid colon Endometriosis nodule was not removed. Total cost: Pending. Surgeons: Dr. Mel Kurtulus and Dr. Chandra Spring-Robinson

The Recovery

Let me start by saying this has been the easiest recovery yet! In a future post, I’ll share my itemized recovery day-by-day journal (I write down EVERYTHING from the second I’m home to four weeks out). And my husband has offered to help so we can compare it to previous surgery recoveries…as well as identify factors that may have made a difference in this time. So, please stay tuned for that separate blog entry.

During the four-weeks following surgery, I had ZERO shoulder pain from CO2 gas (thanks to Dr. Kurtulus and the “Lisa Special”!). And I took ZERO opiates and only two NSAIDs! TWO! I’m so amazed!!! Every day was an experience and journey. So, please stay tuned for the day-by-day breakdown, triumphs, pitfalls, setbacks, and “Today I could do this” entries which I’ll publish as soon as I’ve transcribed it. If I typed those here, this blog would go on FOREVER (and it’s already sooo long)!

Update 7/4/20: it’s been nearly 8 weeks since surgery. I have VERY little surgery pain. If I do, it’s mostly discomfort of low levels. If I overdo things, the discomfort can become pain, but it fades quickly. I DO HOWEVER still have pain when I poop: gut-splitting pain. And I’m curious how my July period will be. June’s period had 2 days of intense pre-op pain on the lower left side. We’ll see!

Surgical Photographs

As promised here are the surgery photographs! Please be aware that the scans are low quality; the Endo on the colon is MUCH more visible, almost a dark purple blotch on the hard printouts. If I get higher-quality scans, I’ll be sure to update these. You can click on them for a larger image.

Did you actually read all the way to the end? OMG. You’re amazing!! Not only is this blog meant as a tool to help others with their surgeries, recoveries, etc., but it’s absolutely a tool for myself: If I need to have another surgery, I can come back to these notes and refresh on what I may need or expect. So, thank you for enduring an incredibly lengthy blog entry!

And if you have your own upcoming surgery, I hope it provides long-lasting relief, that it is a easy recovery, and please feel free to reach out to me if you ever need anything.

*Updated 7/4/20*

Best Endo Blogs of 2020!

Oh my goodness! I’m so honored and flabbergasted and excited:

Healthline has named Bloomin’ Uterus as one of the best Endometriosis blogs of 2020! Among some incredible sites that I respect and look up to! OH MY GOODNESS!

If you’d like to check out everyone who made the list, please go to Healthline’s article!

I know I haven’t been as active on the blog these past few months, but that doesn’t mean I’m not working on it! 🙂 I’ve got several drafted pieces, research tucked aside, and I just need to tweak ’em and post more!

Thank you, Healthline, for the honor!

Podcast About Endometriosis

Sarah Golding is the producer of the Anyone F’Coffee Podcast, which focuses on women’s health issues. Several episodes discuss Endometriosis! And I wanted to share Sarah’s podcast link with you today! Please feel free to pop in your headphones and listen away!

Listen: Anyone F’Coffee Podcast

Sarah is also hosting a Zoom meeting on May 10th for people who think they may have Endometriosis. If you’d like to sign up, you can do so here!

Thank you, Sarah for all that you do to raise awareness of these conditions! Continue to do what you do!

Love, Lisa

Share Your Story: Heather

Heahter’s biggest support through all of this: her husband

Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.

Heather’s Journey:  My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.

I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.

After being in an abusive marriage of over 11 years I also suffer with PTSD severe anxiety. It’s been a rough road to travel but I have my supportive husband, wonderful parents and Endometriosis Sisters to help brighten my day. I started modeling at the age of 36. I’ve been in two tv commercials and am a published model. I’m also part of Models With A Cause representing women with chronic illnesses.
I started Heather’s Hope Endo Strong by myself 4 years ago. I do post on chronic illnesses and mental illnesses. Being an advocate has helped me meet other Endometriosis sisters and help raise awareness all over the world.

If you would like to reach out to Heather, please feel free to do so via Facebook.

I want to send a special Thank You out to Heather for being brave enough to share her personal story, struggle, and victories with us today. 

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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: MariaElisa

Woman standing in underwear with baby's breath taped along her surgery scars

MariaElisa am was diagnosed with Endometriosis this year at the age of 25 after a 10-year struggle for answers.

MariaElisa’s Journey:  I got my first 10cm cyst at age 12, delayed removing it because I was “too young”. Once they decided to do emergency laparoscopy it ruptured and had a torsion which damaged my right ovary and Fallopian tube.

Got my first period at 14, all seemed normal until I turned 16. Severe, heavy painful periods. They started to become more irregular and i was left in debilitating pain on my legs and lower back. Doctor after doctor kept telling me being a girl with these pains isn’t anything to be worried about because my sonograms and paps were “normal” except my enlarged left ovary which I’ve known about for years.

But no obgyn ever realized how painful all these procedures left me on my insides, until one day I came across a few pages of girls who lived near me and I got referred to a specialist who knew what he was talking about and does excision.

He was the first to ever tell me how inflamed and aggravated my pelvis was and saw how painful it was when he did the exam. A month later after 10 long years I had surgery to confirm I wasn’t crazy or seeking attention! I lost a lot of friendships and relationships along the way because I was simply being a “flake” of constantly having pain. I still manage to work two jobs and live a semi normal life and try to distract my pain as best as I can!

My inbox is always open for others who feel alone !

Words of Advice:   Never ever give up on searching for answers ! We all know our bodies and when something is wrong!

The Last Word: Advocate until you find accurate answers from well known physicians ! Excision is standard care not ablation! When you’re offered drugs such as orilissa or Lupron please do research to make sure you know every detail and side effects and whether or not it’ll be good for your body!

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

I want to send a special Thank You out to MariaElisa for being brave enough to share her personal story, struggle, and victories with us today. 

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

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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: Ashlea

Living in Manchester, Ashlea was 21 when she was diagnosed with Endometriosis.  Today she’s 29 years old and shares her Journey with us.  

Ashlea’s Journey: I wish there was a cure out there. It effects lives, effects careers, effects relationships…

The awareness needs to be made so other people wouldn’t have to go through what I have at the age of 29.

I have had 10 surgeries, numerous pills & medications injections, I have had a complete hysterectomy at age 25, I was told I would never be able to have children. However, I’m so lucky I got my miracle baby at age 22.

And just recently Feb. of last year I had laparotomy and left salpingo oophprectomy, because the small percent chance after my hysterectomy of the endo coming back was me I got it back I went through all that for nothing.

I am now in early menopause I am age 29 this a horrible illness has took over my life and career. I have to deal with this emotionally and physically all because off endometriosis. Since all these surgeries my bones are all weaker my muscles are weaker I have back problems bone problems, for such a young age this horrible disease as affected my everything I wish everyone had the knowledge and facts of this horrible disease we need this out there it’s effecting to many women I wish there was also a cure that could change life’s before it changes you. happy to share my story and endo journey.

Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help

Words of Advice:  Keep in there, we are strong we can do this! We will all support eachother you need good people around you! And just because this horrible disease can’t be seen doesn’t mean your being mard or hard on yourself we need a cure we need the help

If you wish to contact Ashlea, you can email her.  

I want to send a special Thank You out to Ashlea for being brave enough to share her story!

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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.