Share Your Story: Mummy

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“Mummy” was 29 when she was diagnosed with Endometriosis.  Now 32, she shares her journey with us.  Mummy lives on the island of Antigua, and faces the struggles of limited options when it comes to healthcare.

Mummy’s Journey: I started getting horrible pains when I was around 25 years old and I did not realize what it was because I always took Advil painkillers.  They did help but I realize after my period was finished I was still feeling pain and my legs, I couldn’t walk, and just feel too tired.

You can say I visited all the Doctors mentioned in your blog. Dr. Roberts was the one who told me I might have endo. I did not know anything about the disease she said to do some research; I did. I felt like she was not helping me just putting me on contraceptives and I have to spend a lot of money every time I visited her. She would perform ultrasounds every time I visit which was pretty often and said she had not seen any cyst or fibroid at the time. I decided to stop seeing her because I felt that she was not understanding to my pain and so I traveled overseas to another Caribbean island where I saw a Doc.

He examined me and I did a few tests. I had a cyst on my left ovary. I could not stay on the island as I lived and work in Antigua. The Doc told me they had to monitor it (cyst) for three months.  Of course, I couldn’t stay so I came back to Antigua.

I saw Dr. Wynter and Dr. Mansoor I felt that they could not help me.

One day a friend of mine told me that Dr. Dean Martin was on ABS talking about the Endo.  I decided I was going to make an appointment to see him, in which I did and he told me after examining me with the pains I had, a laparoscopy was the best option to see what’s happening.

I did the surgery (four hours) of course he told me I have stage four endometriosis and a cyst that had ruptured.

I was placed on sick leave after recovery the pain definitely did not go away I had longer periods and worst pain the only good the surgery did for me is that I could have sex without feeling so much pain during or after sex. I felt like I paid a lot of money and was still in so much pain.  My job wrote me a letter to say I am always sick and they would reconsider my employment with them because I would always call sick. I was working with this prominent Security Firm and even though I worked there for 8 years and informed my boss personally about my condition it did not matter to him.

I would overdose on the painkillers so that I would not have to deal with the pain by falling asleep. My doctor told me I should not wait to have children because of the endo, I just felt so lost and I would just stay in my house and I did not want to come out to socialize with people or anyone. I would lay on my bathroom cold floor just to get relief. Somedays I feel like ending my life until I met this wonderful herbal doctor, Dr. Elra, right here in Antigua. I was feeling so much pain I end up at ER and my friend told me about him and I went and visited him he is amazing.  God is truly awesome.  Diet, plus colon cleanse and medicine healed me less than a month. I do not feel the pain, I am totally pain-free. It’s expensive, but Dr. Elra is the best.

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I want to send a special Thank You out to Mummy for being brave enough to share her personal story, struggle, and victories with us today.  And I am so grateful you were able to find Dr. Elra and relief!  We hope it continues for you! ❤ And your quote, “I had to lay on the bathroom floor just to get relief,” struck me so hard – I think each one of us reading your story today have been there. Thank you for sharing.

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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.

Share Your Story: Pam

Untitled-1 copyPam 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 here.

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!

 

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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.

Share Your Story: Ami

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Ami was diagnosed with Endometriosis when she was 47 years old.  Now a year later, she shares with us:

Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December. During that Davinci procedure, the surgeon (said in passing) that he removed some endometriosis. I have recovered well, am stronger than I’ve been in years, but still have sciatic symptoms that seem to be increasing. I am starting to wonder if endometriosis has anything to do with it all. Thank you for your writing. I will bring this up with my gynecologist and ask some questions of the Urogynecologist who did my surgery. Ami

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

I want to send a special Thank You out to Ami 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 treatment.  And, yes, Endometriosis may very well affect your sciatica or surrounding nerves and muscles.  If you haven’t already found them, we have several blog entries addressing it.  Please let me know if I can help in any way!

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 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: Daniela

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Daniela was diagnosed with Endometriosis when she was 22 years old.  Two years later, she shares her Endo journey with us.

Daniela’s Journey:  Hi everyone, my name is Daniela and I was raised in a small town near the border in Mexico and I am 24 years old. I had my first period when I was 9 and I remember that day like it was yesterday because it haunts me. I remember the face of my mom and grandma as if I was going to die. My childhood was over at that moment my body started to change drastically.

Since my first period the pain was something unbearable, I remember going to the ER every time I had my period. Nothing helped so when I turned 13 years old my mom decided to take me to a GYN and to our surprise I had a bunch of small cysts in my ovaries which were causing me so much pain. My doctor at that time decided that I was too young for any treatment or surgery and that I could bear with the pain until they were big enough for surgery.

I went on like this for years until finally I went to the right doctor and the minute I said my symptoms he started the paperwork for a laparoscopy. I had 4 cysts, and one “chocolate” cyst in one of my ovaries, and a crazy amount of tissue growing everywhere. After surgery everything went downhill for me, he prescribed me with Depo Provera, the side effects where horrible I had constant migraines and I wasn’t feeling like myself anymore. They stopped the treatment and I went on to continuing birth control pills. They worked!

And I was so happy everything was going great until after 6 months the pain was back and it was worse than ever I could not walk, eat, work, I was miserable.

My last option since I’ve tried everything was Lupron, induced menopause. Bodies react to treatments very different but in my case it was hell, the migraines were back, the pain, the hot flashes and I was emotionally unstable. After almost a year of the treatment I decided to stop, my body needed a break from all the chemicals.

I started on the pill again…

but I feel hopeless,

I feel no one understands what we go through and how exhausting it is to hear doctors tell me to change my career to something easier,

to change my life completely and I get it

but I don’t think I am ready to give up everything yet.

I am running out of options and I don’t know if a second surgery would even help…

Words of Advice for Us:  Don’t give up!! In my own experience, I cope with my pain and anger towards this disease by focusing on my friends, my boyfriend, and my career. I chose I very hard major (Architecture) as I’ve been told by a lot of doctors, but it is the only thing that keeps me going. Find something that motivates you.

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

I want to send a special Thank You out to Daniela for being brave enough to share her personal story, struggle, and victories with us today.  I am sorry to hear your pain has returned.  But, in my non-medical opinion – if you can find a physician to do an excision surgery, a second surgery may help!!  My track record is an excision surgery every two years…If you need anything…ANYTHING…you reach out to me here, hun.

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 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: Katie

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Katie was diagnosed with Endometriosis when she was 19 years old.  Now 21, she shares her Journey with us.

Katie’s Journey:  Symptoms first started when I was 11 – my first ever period was agony. At age 12, I had an ultrasound which showed cysts, this was the first time I heard the word endometriosis. I went home and looked it up and everything seemed to suddenly make sense.

I was 18 by the time I finally got referred to a gynaecologist. In September of 2016, I had my first laparoscopy and got diagnosed with endo!

It was July 2017 when I had the laparoscopy to laser out the endo, however my gynaecologist couldn’t do it as it had grown in difficult places and he didn’t know what he was doing, which is when I got referred to a specialist!

November 2017 I finally had the endo cut out and had the mirena coil put in, so far so good!

A few blips, but that’s to be expected!

Words of Advice for Us:  Don’t give up! You know when something is wrong with your body and do not give up going to different doctors until you find a cause of the pain and find something to try and resolve it! Keep strong 💛

The Last Word:I’m always around to have a chat if anyone would like that 💕

If you would like to email Katie, please feel free to do so here.  She also has her own blog, Fabbokatie!

I want to send a special Thank You out to Katie for being brave enough to share her personal story, struggle, and victories with us today.  And congratulations on your recent engagement! 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 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: Michelle

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Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

In 2012 after having my third son I was having lower back pain and the pain seemed unbearable! Move forward to 2016 after both hip surgeries and pelvis surgeries I was having unbearable pain again and the Hopkins doctors were concerned it became malignant so I had a scan that showed ovarian cyst large enough concerning my pain, and after Christmas I was given an ultrasound and told I had two that seemed like chocolate cysts.

By February and March they did lower scopes since I was having bowel issues too. While that came out fine, I found a doctor that specialized in endometriosis and felt I had it. I knew the pelvis pain wasn’t from fibrous dysplasia and with that condition it made it hard to know exactly how much. I went ahead and scheduled surgery for hysterectomy and removal of cysts. So surgery was supposed to be 4-5 hours and it ended up being 9-10 hours. I had it mid-June. Apparently, I had one of the worst cases they have seen.

All my pre outpatient tests did not show the endometriosis on my intestine, rectum glued to my uterus and a more concerning part deep down in my uterus. I’m 2 weeks post op, stayed in hospital for three days. While I have stitches on my stomach, the inside lower is the concern of healing properly. Post op is up and down. Before surgery I was at gym 3 days a week so I have been walking each day but I still have a lot of pain. I feel like my endometriosis was over a scale I’d 10 always. Right now my lower back pain has since lowered significantly and while this not a cure I feel like this surgery for me really did benefit me. I did end up in hospital not even a week after due too breathing problems. Due too all the gas in stomach and upper. I had no issues passing gas and pooping but that was a goal I was determined to meet because I heard that is terrible. The upper gas was hard, and I had a breathing treatment for 10 days. I’m am 16 postop and sleeping is hard. I wake up with pain but in stomach and that sounds normal. My doctor is shocked if how much walking I’m doing but I feel like I’m slow and to be honest I didn’t start driving until a couple days ago and with three kids I don’t go far right now. Lifting is no joke. You have to have someone for 8 weeks to lift so your bottom doesn’t get messed from everything they did.

We have military, my school, and police department support and it has really helped. I have had many surgeries on pelvis for my dysplasia tumor but this one has been the hardest to experience and endure. Your body gets beat up and there is not physical therapy, only pelvis floor therapy which is something you do later on if you have rectum damage. I will have to go on a medication to help prevent more endometriosis. I only my ovaries left and that is bittersweet but I have also realized how lucky I am that I got three with endometriosis as the doctors are in disbelief and say I was blessed.

I think every case is unique and so a treatment has to be in the best interest for you. I hope this gives some insight on the treatment for it.

Words of Advice for Us:  Don’t lose hope. If you have a chronic pain seek medical attention and don’t be afraid of getting a second opinion.

The Last Word: I would say If you have chronic pain and it’s hard and challenging by nighttime don’t rely on pain meds find a solution but seeking a better treatment.

I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today.  As you say, “Don’t lose hope.”  You’re not alone in this battle.  You are a beautiful, brave, and strong woman.  Thank you!!!

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

Yours, Lisa.

Share Your Story: LJG

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

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

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

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

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

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

Share your Story: Genevieve

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

Genevieve’s Journey: I thought I was dying.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 xx

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

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

 

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

Yours, Lisa.

Share Your Story: Lish

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Lish was diagnosed with Endometriosis when she was 23.  Now, eleven years later, she shares her story with us from Ohio.  And she comes to you for help in answering some questions:

Lish’s Journey:   I was diagnosed with endometriosis in my 20s I went into the hospital with pain they thought it was my appendix’s so they went in and found out that I had stage 3 endometriosis. I had a cyst on my ovary and endometriosis all around my pelvic area.

I have had to have several surgeries due to having this. They ended up taking my left ovary out due to getting the same cyst again and again. I had a surgery and a week later it came back. So then that why they just went ahead and took the left ovary out.

I was scared not knowing if I would be able to have kids but I have a 7-year-old and a 1-year-old. So have faith don’t let the doc tell you otherwise ’cause that is what I was told I probably would not be able to.

Here lately I have had horrible back pain right before my period. I was just told that it’s more than likely from my endometriosis. I had my daughter a year ago so it was somewhat in remission. I am a stage 4 now. I came across this ’cause I am worried what I am going to have to face is a hysterectomy. The lower back pain is so debilitating I can barely get out of bed when it hits me. The pain shoots down like electric into my feet. I am trying to understand what spinal endometriosis is? Is it just the nerves that are being attacked by the endometriosis?

Words of Advice:  Don’t give up. People who don’t know what this does to your body will never understand unless you have gone through it. There are doctors out there who care to help.

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

My thoughts regarding spinal endometriosis:  It’s been said that it’s incredibly rare to develop Endometriosis of the spine.  I personally know of one friend who suffers from it.  And I’ve “met” a few other women online who also have a diagnosis of spinal endometriosis.  My laymen understanding is that the lesions may affect or impinge the nerves.  But, please talk to a physician for their understanding…

I want to send a special Thank You out to Lish for being brave enough to share her journey with us today!!   I wish you luck in all of your endeavors and seeking answers. .  ❤ 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.