An Interview with a Silent Warrior.


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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is there anything else you’d like to share?


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

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

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

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

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


Share your Story: Genevieve

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

Genevieve’s Journey: I thought I was dying.

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

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

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

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

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

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

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

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

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.


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!!!



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


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.

Share Your Story: Shadoegirl19

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

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

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

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

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

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

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

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

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

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

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

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

Yours, Lisa.

Share Your Story: JH

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JH was 21 years old when she received her diagnosis in 2004.  Now 34, she is living in Minnesota and is in a lot of pain after having three children.  After reading her story, do you have any words of advice for JH?  She would appreciate an email…

JH’s Journey:   I found out I had endometriosis that was considered moderate to severe after having my first child. I went through the Lupron treatments and a laparoscopy to find out that neither can really help. They can help and may for some, but the told me after all of the treatments and surgery that it may not last for any time at all. Since then I have had two more kids and stopped all treatments. My youngest is 5 and I’m considering surgery because I can barely tolerate the pain as it comes more and more frequently. My pain medicine does little to help, but at least I can control when I take it and get comfort for a few moments when I do. After I had my son the pain down my legs and into my back began and it’s very hard to walk some days. I feel helpless and have heard that the surgery MAY help, but there are no guarantees. My stomach even boats around my menstrual with the pain and that causes even more pain. I’m just at a point now where I’m willing to try something that may help to relieve the stress from my body.

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

I want to send a special Thank You out to JH for being brave enough to share her journey and reach out for advice.  And am so grateful she was able to have three beautiful children!  I wish you luck in your endeavors to find relief…and a medical team who knows how best to approach your Endometriosis.  ❤ Yours, Lisa.

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


Yours, Lisa.

Share Your Story: Erika


After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis.  Living in Ireland, she shares her tale with us just three years later:

Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin.  I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it.  I thought I just had bad periods because my sister (5ys older) always suffered very bad which led to ambulances been called so I was scared that I was going to be the same. But when my sisters stopped ovulating her pain would go and she would be back to normal, when I wasn’t like that every month was a dread without a doubt the would come and with a bang! I couldn’t walk, move to go the toilet, bend to pick up anything id be left immobile for days and the pain was so awful I needed help I didn’t know how to make it stop 2weeks before my periods came I’m in pain and when the arrive yill days after they go it’s not right ! so after years of battling with my weight since I was a child with i coped with because of all forms of abuse I suffered I learned how to cope with food and depended on it to fill that hole in my stomach . as the years going on everything problem I had was “supposedly” because of my weight and my gynecologist was so rude and made me feel so scared I was 13 seeing on for the first time and let’s say she was a bitch!!! also she treated my sister with the same care not a nice women at all ! she made me feel so horrible like it was all in my head and if I wasn’t so overweight I wouldn’t be like this ? so as id always suffered from depression it went into a worse spiral from there. I Felt so low and disgusting in myself and I didn’t even know what was going on! I was left for years undiagnosed looking for ways to stop the pain, from all types of the pill to the contraceptive bar been but in my arm which all most of the time eased the bleeding somewhat but the pains always crept back in. Constantly been so all over the place trying to figure out an answer! I had missed lots of school because of my absence , my junior and leaving cert were very affected seen as I had to complete most of it at home to be even able to pass I also missed out on a lot of fun times growing up with my friends and family and also my Debs in school which every girl can’t wait for ! so as time goes on I was watching Tv one night and seen a girl speak to a doctor and she was going through the exact same as me ! I never knew anyone who I could speak to who was suffering the same! Everyone thought I was faking it when there was even a stage my pain meds wouldn’t work I felt as if I was going mad! I explained to my doc of what I had seen on tv and suggested that maybe “endometriosis” could be the problem ? and got the response of “oh i never thought of that ?” so after all the years fighting for an answer I found out what was wrong with me myself and not the doctors ? funny right? NOT! I was told if I didn’t get my weight down they wouldn’t operate on me? So that made me more upset because of the pain I was I could hardly walk up my stairs never mind hit the gym! But I slowly started walking as much as I could to lose the weight changed my whole eating plan as it wasn’t healthy at all! But I had in my mind now once I lose this weight the pain will be gone and ill be fine working extremely hard on myself to achieve my goal and I did! From weighing over 20 stones to get down to 12 stones was a huge goal for me I was so happy! Got weighed and got told well we can do your keyhole surgery now and I was both really scared but happy because I thought this is what I’ve been waiting for all years! ill be happy and healthy after it! But sadly I wasn’t, they done the surgery and found the endo on my right ovary and removed it then inserted the Mirena coil to help with my periods. It has been nearly 3 years on and I’m still in the same position that I was already in. I cant hold down a job because of my disease also my mental health has really been affected badly from all of this. It also affects every relationship I have in my life with people because I don’t know when the pain it’s going to start I have no control over it. So things haven’t had the best outcome at all, constantly in and out of hospitals with this disease and can’t find the right help. My last treatment option is for me to go on a “decapeptyl injection” which brings my body into early menopause for 3moths or longer ! and the side effects don’t look nice at all after stories I’ve read . its a road I really don’t want to have to go down but feel as if I’ve no choice anymore . I have done everything possible that the doctors have advised but I’m not going to put that injection into my body I mentally don’t think I could cope with the side effects but the hospital doesn’t seem to listen. Its my body and my choice ! Hoping things will improve soon ! only a brief description of how my life has been since this horrible disease as taking toll on me and my life

Words of Advice for Us:  know your own body and how different meds/treatments make you feel. Listen to your body and your mind. Go with your gut feeling in situations its usually always right! always ask as many questions as you can about side effects or long term effects! I have wanted a child so long and their answer time at age 14/15 was to have a baby its the only cure and it’s not always true! look after yourself and be kind to yourself life is hard enough day today and with the pain on top its an even harder to cope. Keep doing and getting through every day the best you can.

The Last Word: IT’S NOT ALL IN YOUR HEAD! YOUR PAIN IS REAL! AND mental health is as important as physical!! Beware of addiction caused by strong painkillers that you could be prescribed there dangerous ! and only use them when u really need to! water bottle and heat pads are your best friend. Anybody out there with any advice I would be very grateful to hear! and if I can help anybody in any way I will try or anyone can get in contact me also. Thank you.

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

I want to send a special Thank You out to Erika for being brave enough to share her personal story, struggle, and victories with us today.  ❤ You are a beautiful, brave, and strong woman.  Thank you!!!



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: T.E.


T.E. was diagnosed with Endometriosis when she was 28 years old.  Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!


I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today.  Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman.  Thank you!!!



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: Stephany

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

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

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

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

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

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

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

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

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

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

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

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

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



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: Sandy


Sandy has questions for our readers!  Sandy was 33 when she was diagnosed with Endometriosis.  Now 39, her pain has returned and she needs our help!

“Hi, I have posted before IDK name maybe Buffie1313. Anyway about 6 years ago I did get the shots that put you through menopause. I have struggled with my weight ever since. I did get the perfect wavy curly hair I always dreamed of. I noticed a few months ago my curls looked as if they where going bye bye. They pretty much are now. I have been able to start losing weight. And….my endo is back!!! The shots took close to 6 years to go away. I am getting the stabbing pain on my right lower abdomen, I always got it there. Now on my far left abdomen like hip bone or pelvic bone. My endo was not just before my period. It was all the time maybe with a few day break. I really feel like it is coming back with vengeance. I hurt through out my day off and on every day. When I am being active I feel like I am being stabbed on both points I said above left hip pelvis can be all day. I am feeling the pressure pain and stabs down in our lady area and other area down in that area. I refuse to do shot ever again!! To be really honest I am scared. Before sex started hurting. I had so much pressure pain down there the slightest extra pressure from sex was tearful. I have a long way to go for real life menopause to end this for good. What have you all tried that helps with this? FYI I am already on hydrocodone for neck problems..Thank God can you imagine how much worse this pain would be? But, never the less I have the stabbing, the feeling someone is taking a melon ball scooper to my insides. Any advice?”

Please feel free to email Sandy at  She’d love to hear your advice.