Share Your Story: Rose of Sharon

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“Rose of Sharon” was diagnosed when she was 26 years old.  Now 44, she comes to us (and you) for help.

Rose of Sharon’s Journey: For 19 years I suffered in silence ’cause no one took my condition seriously not even doctors! I feel as though I was cursed! Can’t keep a relationship, a job & a happy life. Endometriosis stole my entire life! I have never gotten pregnant. Sex was excruciating, the very thought of intimacy was terrifying! For 19 yrs I have endured & continue to endure pains that left me thinking of suicide! I have been told by doctors after six surgeries that I have to just manage this demon disease! From day one of my menstrual cycle, it has been hell. I just cannot live like this but I don’t know what to do or try again! I NEED help!

Words of Advice for Us:  I live on other EndoSisters strength & advice but I will say this it’s not hidden no more. Awareness is the key to this terrible & demonic disease!!!

The Last Word: Please help find a cure!

I want to send a special Thank You out to Rose of Sharon for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  May you find the help you seek.

 

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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: Coby-Lea

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Coby-Lea was recently diagnosed with Endometriosis at 22 years old.  Living in Northern Rivers, New South Wales, she wanted to share her story with others today.

Coby-Lea’s Journey: My story. Coby-Lea, 22 years old, diagnosed with endometriosis. Since I was 13, I’ve struggled with really extreme ‘period pain’ and abnormal cycles. They’d last for nearly 7 days! They’d be heavy. They’d sometimes have some tissue/clotty stuff. I was 13, I didn’t know what to do. Thankfully, my mum took me to the Dr who then put me on the pill to regulate my cycle and hopefully ease the pain. Fast forward 9 years, I cannot take the unbearable pain anymore. I know myself I am not exaggerating every time I say ‘this is the worst pain I’ve ever had!’. And so, this is where it all begins.
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On the 27.6.18 I went for a hysteroscopy, D & C, laparoscopy & dye to finally receive a diagnosis to explain the bed ridden, knife stabbing, punching pain I’d been feeling in my abdomen, especially the past 6 months in particular. In the lead-up, one dr said to me ‘oh it must just be some bad period pain, I’ll give you a script for some pain relief’. Strange, I thought, considering I hadn’t had a regular period for 13 months, since having a miscarriage that broke me in many ways and again the doctor’s words pained me ‘it’s a good thing it was early’. I went for an ultrasound to make sure my miscarriage didn’t leave anything behind. I was told there was some tissue that would pass out. Wrong. I ended up with an infection in my Fallopian tubes, so I found out after my first visit to  emergency. Another 2 emergency visits and 3 doctors visits within a month finally led to an appointment with a gynaecologist. Hooray, I thought, some answers finally. With all my history and symptoms, the gynaecologist didn’t muck around. I was heading for surgery within a month. Thank goodness because the month leading up to surgery was one of the most painful months yet. It’s funny though because I’d tell people I’m in a lot of pain and not feeling well and they’d respond with ‘oh you look fine!’. One day at work I was in agony and nobody could tell. I soldiered on doing my job because living out of home requires me to work full-time and with no sick leave, I had to do what I had to do.
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Surgery. I don’t remember much, just the anxious feeling I felt when being rolled into the theatre room to be knocked out. Lots of people. Bright lights. Cold. Fast forward to waking up in absolute agony, crying for relief. A few hours later I was home, unable to move. Exhausted. The next few days that followed were extremely painful, as the gas they pumped my stomach with released through the nerves in my shoulder. Now here I am, one week after surgery and just had my follow up gynaecologist appointment and stitches out. I was diagnosed with endometriosis. It was removed, but there are chances of it returning. How to get rid of it if it returns? Surgery, again.
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Endometriosis. Wow. 22 years old, recovering from a surgery that removed endometriosis. I’m baffled. On average it takes 10 years to diagnose this. It’s gone, I repeat to myself. It’ll be ok. Be positive, it won’t come back. I have to skip my period for 3 months to help prevent it from returning, although there’s no real prevention. The word kept playing on my mind and how casual the gynaecologist was when telling me … ‘so we’ve removed endometriosis, here’s some photos from the surgery… now let’s remove those stitches’. Hold up, I thought. What is endometriosis exactly? How will this affect me? Will it come back? How did that tissue cause so much agony and pain? So many questions. I was handed a pamphlet to help understand. But yet, I still had no answers. Because there aren’t any.

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I always thought I’d keep my battle to myself, my partner and close family. Because it’s a personal issue, private. I didn’t want everyone’s sympathy, or anyone to feel sorry for me. Or for people to think I was seeking attention, I’m certainly not. But now, knowing that there’s so many others out there who think the same as me and hide their illness, I feel the need to speak out and reach out. You’re not alone. It’s ok to have bad days. Speaking out, asking for help and talking to others is not seeking attention, it’s seeking answers and support, like what am I dealing with? How many other women suffer? Why does someone with mild endo suffer more than someone with an extreme case? Why do some people feel pain and others don’t at all? What happens if it returns? Will I be one of the 3 in 10 women that will struggle to fall pregnant? What can I do about this?

Words of Advice for Us:  Don’t suffer in silence. Speak out, seek support & answers. You’re not alone xxx

The Last Word: Thank you! For providing a platform for endosisters to share

I want to send a special Thank You out to Coby-Lea for being brave enough to share her personal story, struggle, and victories with us today.  Welcome aboard the EndoTrain.  May you find the support of EndoSisters worldwide, as well as some answers and relief.  If you ever need anything, I’m right here.  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: 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: Michelle

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Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

Then around age 20, I woke up one night in the most excruciating pain, radiating from my pelvis. My first thought was that I was pregnant (because I was not on my period which was always very regular- in fact, I was two weeks away from it). I thought something was wrong. Maybe I was having an ectopic pregnancy? I took something like 20 pregnancy tests and all were negative. The pain continued randomly for about 4 or 5 days. Each episode would last a few minutes, had me doubled over in a fetal position and then would ease up almost like a wave coming in strong and then fading out. This would happen maybe 5-6 times a day and often in the middle of the night. After the first couple days of this, I went to the ER and was told I had cysts and to follow up with my OBGYN.

I went to see the OBGYN who ordered a transactional ultrasound… he immediately told me “I think you have endometriosis”. I had never heard of it at that time. It was 2003 and social media was not really a thing yet. The internet was barely a normal household thing…and no one I knew had it… or so I thought. I was told I had ovarian cysts and fibroids for sure but the only way to check for endo was to do surgery. He explained he may have to take an ovary or a tube depending on what the situation was when they did the surgery. This scared the shit out of me! I thought I would never be able to have kids.

I remember crying that whole day.

Scared about losing my fertility and wondering what they would find. At the time I was married and naturally, we wanted children. The doctor told me his staff would call me to schedule my laparoscopic exploratory surgery the next week and set it all up. A couple weeks passed and I heard nothing so I gave his office a call. The front desk staff told me that they were still waiting on his schedulers and I would be given a call soon. Another two weeks passed so I called again. Same thing…. this happened 3 or 4 times over the span of a couple months. In the meantime, I continued to have this excruciating pain come and go every month right around ovulation time.

The last time I called his office I was told that this doctor had left the practice and he had taken my medical records with him. I asked for his new information and the staff informed me he left and did not provide them with any info so they were unsure of where he went or how to reach him.

At this point, I felt defeated and angry. I asked if I could be seen by another doctor in the office and they agreed to make me an appt. By the time I could get an appointment I had lost my job and my benefits. I no longer had insurance and was unable to be seen.

Not only was I having painful, long, heavy periods, now I was experiencing excruciating episodes of pain during ovulation. At this point, I became obsessed with researching this disease and trying to find an answer as to what could help. Having no insurance and no job, relying on one income, my only choice was to seek help with planned parenthood. I knew they offered discounted rates or could get me approved for free services. The only options they could provide for me with their limited resources was testing out different birth control to see if it would help for the pain. I tried every birth control out there and nothing stopped my pain. Some made it worse and some made me feel crazy and depressed. One made me bleed for 90 days straight!

Of course eventually, I got another job and got insurance again! I saw a doctor immediately and they did an ultrasound right on the spot. The doctor agreed he thought I had endometriosis but was very reluctant to pursue surgery. He felt surgery should be a very last resort and instead decided to treat me with Lupron, a “chemotherapy” drug for prostate cancer that is often used on women with endometriosis to suppress the menstrual cycle and chemically induce menopause. I was willing to try anything so I agreed. I was given two rounds of this drug and was told this was the maximum recommended dosing. Any more would be too damaging to my body.

This drug was AMAZING! It completely stopped my pain! I had no more periods and no more pain since I was not ovulating either. However, I soon started to notice that like birth control, hormonal therapy came with its own side effects. I started losing hair, gaining weight, my teeth started deteriorating, my memory started getting really hazy and I felt like I could never think clearly, I also felt fatigued all the time.

After the two injections, which gave me relief for about 6-8 months, I began work at another job and did not have benefits any longer. Again I was with no insurance and no resources to help with this pain that disrupted my life. And now the pain was back.

So I began to learn to live with it. I would be up all night sometimes in pain, in and out of the bathtub… hot baths and heating pads were my only relief. Ibuprofen did absolutely nothing so I stopped trying that very early on. The constant pain left me with insomnia on the nights I would be struck with it. But for the rest of the month I was living a normal life! I was not going to let 4-5 days out of the month rule my life!

From this point on I spent years just dealing with the pain. I was addicted to my heating pad and eventually developed permanent burns on my pelvis and lower belly. I would use the heat pads on the highest setting and take the protective cover off because it just couldn’t get hot enough. Eventually, I just slept with it all the time on me. It was like my security blanket. I would find ways at work to hide during episodes of pain and just let the pain pass. Being that it only would happen a few times during the day and more frequently at night I was able to still get through my day. The worst part would be if I was driving. Many times I would have to pull over on the freeway during an attack to let the pain pass.

Eventually, after years passed of dealing with the pain, all the while starting a career in tattooing, traveling the world, getting divorced, Dj-ing regularly, doing art shows, hanging out with friends and living my life I decided enough was enough of dealing with this pain! I went back to planned parenthood and a doctor there suggested I try Depo-provera injections. She said I could use this for the recommended 5 years (due to increased health risks including osteoporosis) and see if it helped with the pain. She was convinced since Lupron relieved my pain that Depo would most likely help me as well. Depo provera was AMAZING! It completely stopped my menstrual cycle and I was pain-free for the first time in years! I was able to finally live my life freely without being bound and controlled by my pain. I continued to get the injections every 3 months for the next 6 years. All the while still unable to afford medical insurance, but luckily I had this magical drug.

Finally, in 2016 I got to a point in my career where I could afford to pay for private medical insurance and signed up right away. I immediately started googling OBGYN’s who specialized in endometriosis. I knew I wanted to have kids and knew it would most likely take a while if I ever did find the man of my dreams. I also knew I was a year overdue and was being urged by the doctor I was seeing at the local clinic to get off depo since it was only recommended for 5 years.

I started seeing my new doctor and told him of my history. He agreed I should stop depo and we could finally do my exploratory laparoscopic surgery to see what the situation was. I wanted to be proactive in my health and proactive in preserving my fertility. Especially since I was getting older (33 years old at the time). He scheduled my surgery and in May of 2016, I was laying on the table in a very scary all White sterile room at mercy hospital awaiting to be cut open. This was a very lonely and scary experience for me as I had no one close to me at the time to support or help me through this experience. No parents or even a boyfriend to help me with recovery or just for comfort. I had a couple friends visit while I was off work recovering but I spent the majority of the next couple weeks laying in bed alone in a lot of pain, unable to walk around and ordering a lot of food through grub hub since I was unable to do much for myself.

I was told post-op that they had found a small amount of endo between my uterus and my bowel and that most likely the depo injections were keeping the endo growth minimal. I was so happy to hear this. I felt relieved that it wasn’t worse and that I was considered only Stage I. After recovery my doctor put me on yet another birth control pill to keep any growth from increasing. I knew I wanted to get off birth control for good so a couple months later I stopped taking it. I still wasn’t getting a period and had no pain. I figured the depo was still in my system and had read it could take a year or so to completely detox from my system. I started looking into natural remedies at this time and in the meanwhile, I had met the man of my dreams! I didn’t know it at the time but I figured it out pretty quickly 🙂

Shortly after I looked into acupuncture and found Meredith Jones. She had endo herself so I thought she had to be able to help me and guide me on natural remedies and maybe acupuncture could help me balance my hormones naturally as well. I started seeing Meredith once a week. During this time I started taking supplements and some Chinese herbs she put together for me. I started changing my diet and eating an all organic diet. I also started switching more and more of my personal care products to natural/ non toxic. After 12 weeks of acupuncture and herbs my period finally returned and the endo pain returned upon “ovulation time” as well. The pain returned with a vengeance. It was more severe and more frequent than it ever was before. The pain was coming once an hour now and lasting 10-20 minutes.

I went back for acupuncture a couple more times over the next two weeks and in the mean time scheduled an appt with my OBGYN. I arrived in tears….His reaction seemed concerned but I felt more like he thought I was crazy. He ordered an ultrasound and they found cysts along with a uterine fibroid. After several Visits his recommendation was LUPRON. No thanks, I said. Been there, done that. At this point, I felt like I should seek out another specialist and found the endometriosis center of San Diego at UCSD. I saw another doctor there who urged me to “just get pregnant”. He looked at my ovaries on ultrasound and said they looked great and everything looked normal. He again encouraged me to get pregnant and this would solve all my problems.

At the end of the visit he suggested an anti inflammatory diet. Probably the only thing of value that came from the visit. After this, I stopped acupuncture as I didn’t feel like it was helping me personally and was searching for other ways to aid my body in healing. I started reading as much as I could and again became obsessed with learning all I could as to what could help me stop the pain while also preserving my fertility. I read day and night. I read medical studies, blogs, books, articles, anything I could get my hands on about endometriosis and healing the body naturally.

The next month the pain returned even worse than before. I was in pain for 14 days straight now starting at ovulation and ending just before my period came. Again I was in pain every hour for 10-20 minutes. The pain was stabbing, burning and muscle contraction pain. I could now feel the pain in my intestines on the left side, my bowel and my uterus. The pain radiated all over my pelvis and abdomen. I was on the ground, fetal position, can’t talk, can’t walk, can’t think kind of pain. I couldn’t sleep, eat or do anything. This was the most horrific pain I have ever experienced. At one point during this two weeks, I remember being in so much pain I could not move a muscle. I layed flat on the ground paralyzed in pain so bad that I couldn’t speak or move at all. The only thing my body could do was release tears from my eyes while I stared up at the ceiling praying for it to stop. At this moment I felt like someone had dropped a cinder block on my pelvis. The pain was electric and radiated through my whole body. I felt for the first time I was having an “out of body” experience. My husband (boyfriend at the time) hovered over me panicking and all I could do was lay there until it passed.

This began to become a pattern.

Every month.

14 days of constant excruciating pain all day and all night long.

It began to take a tole very quickly on me…Mentally, emotionally and physically. Naturally, I was unable to work and began missing over two weeks of work every month. I continued researching what I could do, trying to remain positive, yet honestly at some points feeling suicidal out of desperation to escape the pain. This kind of pain is traumatic, relentless and excruciating. Far worse than I ever thought was possible. This kind of pain I could only compare to being held hostage and tortured day in and out except nobody was doing this…my body was doing this to me. The worst part was not knowing when it would stop. These are the times that lead me to desperate thinking.

Enduring pain is one thing, but to endure constant, severe pain and not know if it will ever end is literally hell on earth.

I soon after started the AIP Paleo diet. This is a very strict version of the Paleo diet that eliminates all foods that could possibly cause inflammation. No sugar, caffeine, eggs, nightshade vegetables (tomatoes, potatoes, peppers, eggplant etc), no spices, no alcohol, no bread, gluten, soy, no dairy, no grains, nothing processed at all and everything completely organic. Basically paleo on steroids. I also began food sensitivity testing to see what foods might cause inflammation in my body and eliminated these as well. My already very limited diet was now even more limited. Every meal I ate I had to prepare myself. Or my amazing wonderful supportive husband would prepare for me when I was unable to do anything but lay on the ground in pain. This meant a life of no fun. I was in constant pain and was also avoiding any of life’s little rewards or treats. There was no longer anything I could do to add a little fun or happiness to my day. Everything was calculated out that could possibly cause any delays in my healing. It became an obsession. I switched all of my makeup, personal care, and cleaning products to non-toxic. I ripped off my fake nails, took off the eyelash extensions and went completely natural. I started taking even more supplements and ones that were specifically good for endo. I took supplements that were made to metabolize bad estrogens and help balance my hormones. I even drank teas to help detox my liver and cleanse my body. I got rid of all the plastic containers in the house, threw out all the Teflon pans, and started drinking alkaline water. At this point everything I put into my body was for a purpose and that was to heal myself.

I started using CBD, got a tens machine, started doing yoga, started meditating, anything I could do to help myself with the pain and heal myself. I was obsessed and motivated to cure myself. My pain continued month after month… after about 4 months of strict AIP, losing 30 pounds and completely changing my entire lifestyle I began to see a difference in my pain levels and frequency of pain. The pain was now only lasting 9-10 days a month and the severity of pain was decreasing. I was happy with the improvements but I was expecting more, was exhausted and frustrated. I was still suffering, still losing 9-10 days of sleep, still throwing up every month the day before the pain and “ovulation” hit and still feeling depressed, stressed and anxious. Losing that much sleep every month takes a mental toll on a person. Severe sleep deprivation had its own variety of side effects.

At this point, I began seeking out a naturopath and was recommended a homeopath doctor by a friend who said she was able to help her balance her hormones. I began seeing a woman named Andrea who helped me with further food testing, adjusted my diet slightly and ordered hormone panel tests for me. She also put me on a 6-week full body detox system. At that point I was taking 12 different supplements under her care, detox drops 3 times a day, drinking a detox water through out the day and doing food testing every 3-4 weeks at each visit. I was literally doing things all day every day to try to heal myself. That’s how desperate of a situation I was in.

After seeing Andrea for about 5 months she put me on some creams to help my hormones balance naturally based on my hormonal panel results. I also started seeing a pelvic floor physical therapist due to the “aftershock” of pain I had once all the pelvic contractions would stop. The endo pain would stop yet I started experiencing musculoskeletal pains due to how bad and how frequent the endo pain was. These constant contractions began to make my pelvic floor muscles weak and tight. It felt as though all my muscles in my thighs, butt, pelvis, and abdomen were failing. This was a new side kick of pain called SPD and pelvic pain. I decided to finally give in and see a pain management doctor after 9 months straight of this. It was a long process to get approved for pain meds but my husband and I agreed it was only going to be beneficial for my mental state to have some sort of physical pain relief while I tried to heal my body.

I procrastinated on this for so long, wanting to keep all chemicals or anything toxic out of my system to prevent any interruption in healing. I also knew the reality of the severity of my pain and that it would take very strong drugs to alleviate any pain. I had tried a morphine pill, which did nothing and a Percocet 30 mg and neither was able to give me relief prior. The pain management doctor took a while to figure out exactly how much pain I was in or maybe believe how much pain I was in, but eventually gave me something that was able to somewhat take the edge off. I still was in a lot of pain, still unable to sleep or do much but honestly it did make me a little less miserable. I had my husband keep tabs on my dosing and made sure he knew and was clear on what I was taking and when to ensure no misunderstandings happened during my use of the drugs.

About a year into this new life of pain and agony and about a month of using the creams I had got from my homeopath, I missed my period. I thought, great. Now my period is delayed and now I will have to adjust my already fucked up, minimal schedule at work since now ovulation and therefore pain would be delayed as well. After two days, and still having pelvic and SPD pain, I curiously took a pregnancy test. To my complete shock it said positive! I could not believe it. I told my husband and his mouth dropped open and we just looked at eachother in shock! We had both wanted to have kids, and it was part of the plan, but we gave up on the idea probably 3 months before this due to how much pain I was in and coming to the conclusion that It would probably never happen because of my battle with endo. The pelvic pain continued randomly through the next 10 weeks or so but eventually ceased.

I am now 32 weeks and have only experienced a few pains here and there reminiscent of endo pain. I am so grateful for this little miracle growing inside me. My little baby boy. I honestly thought I would never be a Mother, which was devastating to think about. I am also grateful every day that I am not dealing with the agonizing pain of endometriosis. That being said I fully intend on having a natural unmedicated childbirth for several reasons:

One, is to prevent any interventions that might lead me in the downward spiral towards a C- section. For me, having endometriosis, a C-section could pose an opportunity for more endometrial growth and adhesions due to more scar tissue. Which could lead to more pain and more problems in the future. Any further surgery is the last thing on my to due list.

Secondly, I want to go through the experience that many women have gone through before me. I believe there is a lot of fear surrounding childbirth and I don’t think it should be that way. I believe I can do it and it is on the life bucket list.

Third, I want to compare childbirth to the horrible pain and agony I have lived through with endometriosis. Childbirth at most usually lasts a couple of days. I have endured weeks of constant relentless pain and I know other women have too. Because of this, labor pain does not scare me. I have a very good feeling that labor will be a lot like the pain I was in before getting pregnant, but the only way to know for sure is to experience it myself. In this way, I would like to spread more awareness about how devastating this disease is and how serious it is.

In the past couple of years, I have heard of several women who have ended their lives to escape the pain of endometriosis. This is a tragedy and no one should have to go through what we go through. With more awareness, hopefully, a cure will be found. SOON!

My main driving force, my motivation and my courage have all come from my husband. If I didn’t have him supporting and encouraging me, I don’t know that I would have survived through all of this. He is the most important and valuable person in my life. He has witnessed me in the worst state and at my lowest points of life and has still stuck by my side with a smile on his face. I only hope all my endo sisters could have a partner like him.

This is not the end of my story. I can’t wait to share my experience of childbirth. My hope is my pain will magically disappear after pregnancy and never return. But either way, I will continue to spread awareness and be a voice for this disease.

Words of Advice for Us:  Never give up!!!

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

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.  What a harrowing journey, indeed!  Kudos to you for being strong enough, both mentally and physically, to endure what you have.  And thank God you have such an incredibly supportive husband!  Congratulations on your pregnancy! And we’re wishing you and your family all the best.  If you ever need anything, you know where to find me. 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: MfrBeth

 

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MfrBeth is a bit tough to type, so I’ll call her “Beth.”  Beth’s daughter started showing symptoms of Endometriosis when she was 12 and was diagnosed with Endo when she was 15 years old.  Now 16, Beth has questions pertaining to her daughter, and shares her journey today.

Beth’s Daughter’s Journey: My daughter started having what we now know as endo symptoms at age 12, not long after her periods started. We did hormone check to see if they were not in parameters and she went on natural hormones-estrofactors and progesterone cream. This helped for a while, but she always had to go to nurse office at school for Midol for 1-2 days of her period, would be nauseous and have a headache and cramping.

About a year later, the cramps were beyond tolerable and Midol wasn’t helping. Went to OBGYN and she said to take Ibuprofen 4 tablets (800mg). Worked for a couple months, then excruciating pain with periods.

Went to ER’s with them telling us to go to OBGYN. Made them do an ultrasound to check for cysts-clear of those at that visit. Continued to do natural hormone progesterone, but I took her off Estrofactors because I read the link of high estrogen to endo and figured it was making things worse. Helped only a little. Things continued to get worse and she would miss 1-3 days of school with every period. OBGYN wanted to do the pill. I was hesitant due to her having weight issues already. She also didn’t want to do the pill.

Finally, at age 15, we went to see my niece’s OBGYN because he was the one who finally helped her with her endo suffering. He took my daughter in for emergency surgery. The staff ridiculed him for doing endo surgery on a 15 year old! They found out we and he were right. He found a moderate amount of endo and removed it.

She felt awesome for almost 6 weeks when her first period started after the surgery. BAM! Right back into it all.

He put her on birth control. Did nothing. Depo Lupron shots in addition to birth control-no help, constant headache and periods continued. Depo Lupron alone and no help, periods continued. We read a researched what we could find. Went back 5 months later begging for a hysterectomy to at least stop from getting new lesions. My daughter also is the carrier of a muscle disease and didn’t want children. Dr. was still hesitant to remove uterus. Then I showed him pics of her brothers who have the muscle disease and he understood.

She had only the uterus removed and cysts taken off right ovary, all endo that had been removed 5 months earlier was back!!! This surgery helped some, but not enough. 4 months later we found Center for Endometriosis Care and had surgery again. Lots of endo, scar tissue and scarred appendix removed, R ovary removed had 10 cysts on it! She has felt much better since as far as abdominal endo. However, she ended up with a headache about 5 days after surgery and still has it 7/8 out of 10 every day (it has been just about 2 months).

She is wondering if she has endo in her lungs as well as her brain. Already been trying to get help from local neurologist and Center for Endometriosis Care but no one is helping yet again! She is only 16 and I am so worried about her mental state due to all this pain and problems. She is beginning to feel that no one is going to help her. This has been a 4 year journey already for such a young person 😦 Who should we go see? As in who is the expert for endo in these areas? Lung and brain?

To Beth from Lisa:

 

I want to send a special Thank You for sharing your daughter’s journey with us, and reaching out for help.  Unfortunately, Endometriosis of the lungs and brain are considered very rare.  If you haven’t already read my entries on them, please find the lungs here and the brain here.  I hope you can find some answers and direction there.  And, please be aware that it may not be Endometriosis, but other causes of her pain.  Finding the right physicians to talk to about her symptoms will be so helpful.  Please continue your search and advocacy for your daughter’s health. Your a good Mum.  I wish we could do more.

 

 

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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: Chica B

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

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

I’ve been treated by a Chiropractor because I thought that all that exercise I did since my teens til now may have cause some misalignment on my bone frame an were the cause of my pain. I considered to try this to see if I could have any relieve. But no, still not. My actual problem is that my left leg hurt like nobody’s business from lower back, butt crack irradiating pain to my groin thigh and tingling sensation down to my heel. It hurts specially when I sit or walk long distance. Or simply standing. It came to the frustrating thing that if I try to lift my leg, the shooting pain in my groin goes bunkers.

My family Doc. Said to take Tylenol. My Chiro, do therapy, and ice packs. I said, keep exercising as much as you can, keep working. I need too. Rest as much as you able. Nothing seems to be working. I came across this article about endometriosis joint pain and I was right! I’m my 50, and exercising isn’t the problem at all. Not to be bragging, but when I’m feeling Rocky, I can exercise two hours non stop. Yes,I get super sore but my body recovers quickly. And I’m all happy. But boom! Period time and all these evil symptoms come slowly like a cat moving towards its prey. So now, I get frustrated because my fam doc said on my last pap, that she will see me in 5 years.

About my endo, she can’t do nothing due to my age to prescribe meds for the Endometriosis, and the last resource is surgery. So she prescribed me 500ml of Tylenol before my period. But, that doesn’t solve the leg pain issue. I guess I need to go Natural and see if that works. The Chiro, well, I will save the money to go to an Orthopaedic to make sure my spinal discs are healthy and the pain is not coming from that area. But I’m 100% sure my endometriosis its the cause and with a tilted uterus towards the spine.

I’m screwed.

Words of Advice: Get to know your body like a map. Don’t care if they told you, you are nuts. Get informed about any health issue you are going through. Do the research, but don’t get too crazy about it. Too much info will make you think you are dying. Get 3 gyno opinions don’t just get stuck with one. Ask questions, don’t settle for less. Your insurance pay, yes, but is your life. In my case, I pay, I need answers. Keep a journal if it possible. Like the article said, endometiosis can be misdiagnosed by something else and that will hurt you instead of helping you. Be specific. Be honest with your doctor. If he/she doesn’t explain or always is in a hurry. Fly, and find a good one. I’m sure there is a Dr. Who somewhere.

The Last Word: Good luck to all. Me, well, I will start my own therapy and hope for the better. Good luck Chicas😉

I want to send a special Thank You out to Chica B. for being brave enough to share her journey with us today!  And we all wish you the best of luck with your natural course of treatment and honoring your body.  Please feel free to return here and keep us posted on your progress.  Fight on, Sister.     ❤ 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: Devon

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Devon was 25 when she was diagnosed with Endometriosis.  She lives in Yorkshire, UK.  Now a year after her diagnosis, she tells her story…

Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologise for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have an 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was in fact bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favourite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following it’s removal I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopy’s should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey it has felt like The Blind leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, you can do so here and you can follow her blog.

I want to send a special Thank You out to Devon for being brave enough to share her journey with us today!  While reading this, I went through a gambit of emotions: I related to a lot of what you were saying, then I was furious at the dismissal by your physicians, then I was elated at your strength, then sad that your pain has returned.  Your story captures such a large gambit of what we endure daily.  Thank you.    ❤ Yours, Lisa.

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: Susie

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Susie is 41-years-old and was just diagnosed with a surprise Endometrioma in a very surprising location.  She lives in Austin, Texas and is coming to grips with her diagnosis, as well as searching for answers and support.

Susie’s Journey:   I began experiencing symptoms of my disease when I was in my early 20’s around 2004-2006, I felt a lump on the right side of my groin that moved around a bit. I had a pap smear that showed normal results, then a sonogram that did show the mass, and then a CT scan that was inconclusive. I was told that cancer was ruled out and that they had no idea what it was, but that it wasn’t worth doing a biopsy over, but that if it ended up causing problems in the future, I might probably have to have one.

Being a young 20 year old, I feared the idea of anyone cutting my groin open and could not afford to get off of work for surgery anyway. I lived with the mass for over a decade. Throughout that time, I began noticing it growing larger and becoming more firm. It was no longer moveable and it swelled up around my menstrual cycle. The day before or the day I started my periods, there was extreme pain. The pain also continued up to a week after my periods. Sometimes, it made it a little difficult to walk and I’d get a bit of pain on my right leg, but not too much. It prevented me from moving and sitting freely. I couldn’t even cross my legs.

Fast forward to 41 years old, I finally decided that it was time to do something about it. I read up about endometriosis and even asked the doctor if it was a possibility. After about several pelvic exams, 2 or 3 sonograms, a CT scan, and a very painful biopsy that required 2 shots of local anesthesia in order to retrieve 2 samples of the mass, I was finally diagnosed with endometrioma.

I was given the option of excision or just living with it.

Doctor asked me if I’ve considered birth control and slightly suggested I use it. I told him that birth control would not remove the mass and did not help me much when I was on it in my 20’s and that I wanted this lump out of me. He said that he would perform a simple outpatient excision that would require very little (if any) time off of work and that I would be running around just fine afterwards. About 2 weeks ago, I finally had the surgery that did verify “endometriosis”. I was completely anaesthetized to sleep. Btw, I’m not sure what the difference of “endometrioma” and “endometriosis” is because both words keep getting used by my doctor and pathology report. My doctor corrects me when I call it “endometriosis” and says it is “endometrioma” and then the pathology report says “endometriosis”. My doctor seems impatient when I ask him to explain the difference. I almost wonder if he actually knows about what I have and doesn’t want to confirm my suspicion. I am in the dark about that right now.

WELL, I awoke from my surgery to find that my right foot and leg were asleep. I could barely move my toes. My feet have a tingly feeling and my leg has the same feeling as though it’s been asleep and is about to start waking up. I was told that because I could move my toe, it was a good sign and that I should be able to start walking just fine again in about a day. Since then, although, I regained some feeling back to the upper part of my leg and some of the left side of my right foot, I am experiencing Charley Horses” both in my sleep and mostly when I walk for the past week. I still have to walk very slowly with a cane and an extreme limp.

Yesterday, I was admitted into the emergency room to check for DVT (Deep Vein Thrombosis aka “blood clots in the leg”) but I checked out clean. The emergency staff told me that I did not suffer from dehydration and that my potassium levels were fine and that all he can think is that maybe my leg’s nerves are cramping because they are “waking back up”. I don’t know if I’ll be able to walk like normal again. It’s very hard for me to get around at work and college classes are difficult to get to. I have to have people do things for me. I had to cancel my birthday plans to go to the beach because I don’t think I’ll be able to walk around in the sand and the idea of a wheelchair is very depressing. I am getting married in October and am mortified of the idea of having to walk down the aisle or live my life with a cane. My follow-up appointment with my surgeon is next week. Although, I hope that I will be okay by then or that he’ll be able to help me, I don’t know if he’ll have any help to offer. It’s scary how little the medical industry knows about endometriosis. What is wrong with my leg???! Also, now I’m hearing that just because you have endometrioma excised doesn’t mean that it won’t come back and that I should consider a hysterectomy. I don’t want to go through this again. I almost regret having the surgery in the first place. I hope that it was worth it and that I will be able to walk again.

Words of Advice: Read as much as you can about it. Meet as many people as you can. Ask as many questions as you can. Don’t give up.

The Last Word: I hope that we can get more endometrioma awareness outreach out there.

If you would like to e-mail Susie, you can do so here.

I want to send a special Thank You out to Susie for being brave enough to share her journey with us today!  Congratulations on your upcoming nuptials!!  And good luck with your healing and the circumstance with your leg.  You have my email address, woman – keep me posted!!    ❤ Yours, Lisa.

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: 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.