Endometriosis Stories - Page 12

Name: Emily
Location: United States
Date: Feb 2007

I was diagnosed with endometriosis in November 2002, at age 26, much to my surprise. I had severe menstrual cramps for part of my high school years that usually left me going home from the nurse's office once a month. At home I would take several Motrin at a time, lie in scalding hot water, get red welts on my skin from a too hot heating pad, and lie in bed in strangely contorted positions. Whether or not this pain was a sign of endometriosis, I'll never know. From about 2000 to my diagnosis in 2002, I had experienced a dramatic increase in weight gain, and a decrease in energy and libido. I thought the weight gain was because I had started napping instead of exercising. I never thought that this may have any real hormonal connection. Then in 2002, I had recurring yeast infections that I never had problems with before. I was still having pain-free periods since going on the pill at age 17. Then all of a sudden in Nov. 2002 things changed. I had a routine gyno appointment with nothing unusual noted. The following day I awoke with a dull ache in my left ovary area and lower back. I used a portable heating pad and the ache was gone by lunch. I also had another infection. The next week I began my period and upon waking I knew something was wrong. I had severe pain from my left hip to my toes, vomiting and diarrhea. I tried to wait it out but became so sure I was dying that I had my husband take me to the ER. There, my temperature was 94 degrees; I looked like a total strung out person, and whatever pain medication they gave me was useless. The ultrasound showed a very large cyst and fluid around the left ovary. I was freezing and shaking off the gurney. By 5 pm I was no longer in pain, but totally freaked out. A follow-up with my gyno revealed his suspicions and he suggested a laparotomy in the ASAP. I'm thankful for the 5" scar on by abdomen. The Jan. 2003surgery revealed severe scarring and adhesions to the abdomen, bladder, right ovary, uterus and intestines. The "chocolate cyst" on the left ovary required a complete removal of the ovary. He also noted extensive scarring in the right (good) ovaries fallopian. A hysterosalpingogram showed complete blockage of the tube. How could this happen with no forewarning? I did 6 months of Lupron, lost tons of hair, had night sweats, ht flashes immediately. I started POP BCP once my cycle returned 8 months later. They made me miserable so I quit them. I was a hormonal, sad, irritated and hopeless wreck. I worried we'd have to pay large quantities of money to do IVF because of the scarring. I cried, why me and so on. However, in 2004, 4 months after the return of my period, I was thrilled to find out I was pregnant. I feel the Lupron had a part to play in it. My son was born healthy. However, I still wonder if the hair I'm suddenly losing 2 years after his birth is normal, or is the other ovary being ravaged. I still have more cramps than I would expect, but nothing a couple Motrin can't handle. But, now I have pain and bloating during ovulation, and periods coming a couple days sooner than expected. My mood and irritability are often more than I can bear and I feel like a monster. Is it just me, or from what I'm learning, Endo could still be festering, running my immunity down and compromising my health? Is my libido low because of my struggles with weight and is the discomfort during sex because of having a baby? Am I this tired for some other reason than Endo? I read others' stories and feel out of place, because I feel my pain experience has been minimal in comparison. But, the not knowing what's going on with me for certain is making me crazy. Will it come back, will I be able to have another baby, Will I be in early menopause? One thing I do know, is that the sudden pain that led me to diagnosis is far greater than natural childbirth. Since Endo seemed to come so suddenly for me and has yet to rear its ugly head again, I do wait in constant fear of what-ifs. These stories have given me the realization that Endo is more complex for me than I think and there are different ways to cope and be proactive that I never thought or was advised of. For those suffering...My thoughts are with you.


Name: Jemma
E mail: chelsea_jem@hotmail.com
Location: United Kingdom
Date: Feb 2007

Well its like most of the people on here, where do you start? I have tried reading through other peoples stories, trying to relate them to my own symptoms but each persons case is different. I am 22 and engaged to be married next year. I started my periods when i was 13, the same age as my mum. I always had irregular periods but whilst going through my teens i never really thought about it. When i met my partner i was in the Royal Air Force so i was fit and healthy with all the exercise i had to do, and i met my partner while i was in the RAF. One weekend when i came home from base (i am sorry if this offends anyone, its not my intention) i was being intimate with my partner and i felt a stabbing pain near my left ovary. I am the type of person who just shrugs things off so i never did anything about it. I left the RAF due to circumstances and moved in with my partner, after that the pain got worse. After about 6 months i went to see my GP and he said to take some tablets and come back, i was back within 2 weeks as the pain was shocking. When i told the doc were my pain was coming from and he did an internal and said that it was bowl related. I explained to him that the pain was coming from the area around my left ovary, well i presumed the GP was right and went to see a bowl specialist. After numerous internals and a ultra sound scan they discovered i had a cyst about the size of a walnut on my left ovary. After finding this out they finally sent me to gyni and i had a laparoscopy done and that is when they found the endo. They said they had burnt it off and my cyst has disappeared so i was over the moon and glad that it was sorted, only my happiness was short lived. After 4 weeks my partner and myself were being intimate and i was nearly crying with the pain, i never went to the docs because i thought maybe i had rushed into it, but the doc said we could after about 3-4 weeks. It started to get worse, i started cramping over in pain at work and sitting on a chair brought the stabbing pain on. I went back to the doc and he placed me on provera, well after 3 weeks of taking them i was ready for jumping off a bridge so i told the doc i refused to take them anymore. I am now back with gyni, waiting to go for another scan then waiting even longer for something to be done. I am wanting to start a family next year so i am getting nervous about the whole situation now, my partner is amazing he has been with me through it all, although we cant be intimate because the pain is unreal he says he does not mind, I DO. I feel like i have been let down, i am back to square one and have all this on my mind while trying to sort out a wedding and working full time. I am so grateful for to other people sharing their story because it makes me feel like i am not on my own.

Name: Teresa
E mail: TESSBAY@aol.com
Date: Feb 2007

I found out I had endometriosis 3 years ago. It all started when really i suppose from the age of 12 every month i would be being sick and curled up in pain with my periods. This went on for years, in this time i was given the pill to help but it would make the pain worse. I was always off of school because of it. When i was in my twenties i would bleed so heavy it would come through my clothing and my thirties was just as bad. When i got to 35 i started to get dizzy spells, it came to the point where i couldn’t stand up and had to go sick from work at this time i was bleeding so heavy and i would only have 1 week free in between periods. I couldn’t stand properly for 6 months because of the dizziness my eyes also felt strange i couldn’t read look at the telly or lights, my hearing was over sensitive i couldn’t bear any noise and i felt like i was walking on sponge everything felt strange. After 6 months of rest i started to feel better and i was diagnosed with an inner ear imbalance and something called vestibulor ocular disorder i dont think they really know what caused it. I started doing exercise like yoga then something happened the next day my left side of my leg felt like it had been pulled out of its socket i couldnt stand on it and it was really hot and had prickly and sharp stabbing pains which spread around my back and hip and underneath me. I went to my doctor who said he could see nothing wrong but blood kept appearing in my urine samples. In the end i went private to a gynecologist who said i had a small cyst on left ovary and fibroids in the womb that it was nothing to worry about and she would send me to a urologist because of the blood in urine. When i saw the urologist he did a scan and said im not happy about the cyst it has grown very large and we think it could be a dermoid cyst so i was referred back to my gynecologist and she put me in for a laparoscopy. After the laparoscopy was carried out i was told that it was a chocoltate cyst and they had removed it and that i was covered in endometriosis everywhere in my pelvis and they said they had never seen anything like it. They put me on zoladex analogues implants which i was on for 13mnths along side HRT. I had my second laparoscopy which they said most of it on my right side and died off but my left side was still alive so they cut most of what they could away but i had a uterine nodule and the nearest hospital that could do the operation was in Chertsey St peters. So they did what they could as endo was on my bladder, behind the womb in between the womb and the back on the bowel which they shaved and other areas. I was told that i would always have this disease there is no cure from it only treatment of hormone therapy and operations, which i have come to accept, apart from this continuous leg, inner thigh, pubic, pelvis and hip and under rib pain all on the left side it is a constant dull ache and sharp pain with hot stabbing pains which are prickly in nature. If anyone else out there is suffering from this and has endometriosis perhaps you could email me it feels like a nerve, anyway i have been put on the yasmin contraceptive pill and take it continuously so i dont have anymore periods, if i do stop it i get terrible pain still and bad PMT so they have told me to stay on it. I have also been referred to a pelvic pain clinic to sort out the nerve pain. I feel better for not having periods anymore although i sometimes get breakthrough bleeding and bloated abdomen but i am now concentrating on my leg and hip pain which is what i went to the doctors in the first place for, i do think that is connected to the endometriosis as it would worsen when i had my periods and so does my dizziness and pain in my left side of head. Also think that my left ovary may be the cause too but they say its okay. If anyone out there has any similar symptoms with there endometriosis please email me at TESSBAY@aol.com the only other thing i would say with this disease is you can get very teary and feel depressed and have muscular aches and pains sometimes feverish and suffer from severe tiredness, most doctors do not tell you that these symptoms comes with endometriosis and sometimes your just left feeling like its in your head but believe me its not most women i have spoken too also suffer from this with endo, so if you feel like this it is best to tell your doctor as there are medications to deal with it.


Name: Darlene
E mail: blydk@msn.com
Location: United States
Date: Feb 2007

I'm 32 years old with four kids and a supportive husband which I'm very thankful for. He has been to all of my doctors appointments since my pain started. I was diagnosed with endometriosis a few months ago during a laproscopic surgery to remove a cyst from my right ovary. I had never heard of endo before this, so I have spent the last few months since my diagnosis researching it. I have found this website to be the most helpful. It's very informative and easy to use. I have always had painful periods, but I just thought it was normal. About four years ago my periods started to become longer and longer. Eventually, I seemed to be bleeding most of the month. The unbearable pain started about a year ago. I had an ultra sound that showed a cyst on my right ovary. My doctor said we would just watch it since most cysts go away without treatment. The pain never went away though, so I had another ultra sound which showed another cyst. I was having sharp pain on my right side along with lower back pain that radiated down the back of my legs. I went to the doctor in pain 4 times before he referred me to a surgeon to remove the cyst. I'm glad I was persistent. Otherwise, I wouldn't have been diagnosed. I'm experiencing pain on a daily basis, mostly in my lower back. I have a few days during my period in which the pain is debilitating. I'm always tired, and I'm thinking about starting an anti-depressant. I'm trying not to be a whine baby, but I'm miserable. It's hard to talk to my family and friends because none of them really know what I'm going through. I feel alone when it comes to my endo. I find comfort in reading other women's stories because I can relate to them, and it helps me not to feel like I'm crazy. I just got my first Lupron shot a week ago and I'm anxious to see how much relief I get from it. I would appreciate any info that anyone is willing to share with me.


Name: Cindy Thompson
E Mail: cinthomp@bellsouth.net
Date: Feb 2007

Back in October 2003 i was told i had endo by my OBGYN i had laparoscopy done than i had whats called thermo choice and a D&C.After the thermo choice and the D&C i started having sereve lower back pains told my Dr about it all he could say is i assure you it was nothing i did .I finally found a Dr who specialized in endo and in January 2004 had a hysterectomy needless to say my life has been hell since. The endo had attracted it self to the back of my belly and to my ovaries and my tubes as well, while still in the hospital my Dr told me she was giving me a shot called depo and that i had to have one more shot needless to say my Insurance company would not pay for the second shot and i did not have the money to pay for it so never got the second one.The Dr who did my hysterectomy retired a month after my surgery and now i can not get a Dr to even talk to me no one well see me and or refuses to treat me while in there office when they find out i have endo. Even after having a hysterectomy i still feel like i have endo and since no Dr. well talk to me can not ask them.Do you ever feel like your up against a brick wall and no matter how hard you hit it you can not break it that's how i feel lost and alone. The only relief i get from pain is pain meds and i only get them because now my back is so screwed up i now have Dextroliosis of the lower lumber spine also have Retrolisthesis L5 S1 area Disiccation of disk L4 L5 Bulge abutting ventral of the thecal sac and last but not least Stenosis Neural foramina L5 never had any of this until i had the thermo choice and D&C done. And to add insult to injury i was hit from behind by a truck doing 50+ MPH while i was working so needless to say i lost my job And can not get SSI because no Dr. well help me. So now i set at home depressed and gaining weight because i can not exercise. And i know the pain meds well end real soon because pain management only helps you for so long than what do i do. I can only hope there is no other women out there who has this much burden to bare but i know better i have read some of the stories. That is what made me write this all of the other women who are in my shoes and who know how hard this is. And i think each and everyone of you for your story's as painful as they are they do help women like me who feel trapped.

Name: Shari Henderson
E mail: Henderson9142@comcast.net
Location: United States
Date: Feb 2007

Hello, my name is Shari and I was diagnosed with endometriosis in 2002. Though I was diagnosed only 5 years ago with this disease, I have been suffering from it for about 11 years. I have always tried to keep up with this disease by reading any materials that I can find and also keeping up on the latest news and treatment options. I have found that recently I have started to suffer a lot more from this disease though. I have recently started to feel very sick, tired, and weak basically all of the time. I have also noticed that daily activities that I once did without thinking about them have become much more difficult for me to complete. If anyone has any advice for options that I may try, I would greatly appreciate it. I am blessed to have a doctor that is always willing to listen and has been supportive of me every step of the way. I am currently looking for a new doctor though because I moved to a different state. Finally, I wish all of the best to others who are also suffering from this disease. All the best, Shari


Name: Lora
E mail: lalia70@yahoo.com
Location: United States
Date: Feb 2007

I am writing my story for all those women who, like me, have gone through the painful journey of having endometriosis (“Endo”). Even though millions of us suffer from this disease, it continues to be misunderstood in terms of its physiological and psychological impact on our lives, even among doctors. But most importantly, there appears to be little knowledge with respect to the type of treatment options that are available. In fact, many of us go from doctor to doctor looking for a cure or simply relief from the pain, but often the answers are not helpful. As the years go on, the pain and suffering become worse and the frustration and fear about what to do next only grow. By telling this story of my own personal journey, I hope that this will enlighten other women that there not alone and that there is a lot of work that needs to be done on educating the public about this dreadful disease. My journey began when I started to have my menstrual cycles as a teenager. My mother told me not to worry, because I was becoming a woman. However, the pain was so excruciating that it became some of the worst times of my life. While most of my friends had light and relatively painless menstrual cycles, I didn’t have it so easy. I always experienced severe pain and bleeding, headaches, fevers, cramping and nausea, which lasted for almost a week. Even at that early age, there were times when I just couldn’t go to school due to the debilitating pain. As a result, I had to take several pills each day of Tylenol, Motrin, and Ibuprofen, often in combination. As I look back, I cannot tell you how I didn’t overdose on these pills. I also had to go to the emergency room several times. Despite my obvious pain and discomfort, however, the doctor would either treat me with more pain medication, or would tell me that I didn’t have anything because it was all in my head. Of course, as I continually suffered from Endo, I quickly developed a very skeptical relationship with my gynecologists. I say gynecologists in the plural sense, because I have probably seen over 30 of them throughout the course of my life. In my experience, the problem with gynecologists is that they often misdiagnosed me with some other ailment or disease. Even when they did correctly diagnose me with Endo, many of them simply didn’t understand how to treat the disease. The first couple of times I went to see a gynecologist no doubt epitomizes these problems. I was 17 and living abroad in Costa Rica. After my gynecologist took an Ultrasound scan of my abdomen, he somehow came to the shocking conclusion that I had a cancerous tumor in my ovary called a Teratoma. He told me that I had to immediately have surgery to remove my ovary and any other surrounding tissue that may be cancerous. Here I was, a young girl faced with the prospect of not only losing my womanhood, but possibly my life! My father, who is a physician in New Jersey, told me to come back to the United States to get a second opinion from another gynecologist. When I went to see the other gynecologist, he told me that I didn’t have a Teratoma, which was a great relief to hear. However, my relief was short-lived, as he further explained that I had Endo. He then recommended that I needed a hysterectomy since I would probably never be able to become pregnant and would live in terrible pain the rest of my life if I didn’t have the surgery. For me, though, the thought of having a hysterectomy at my age simply wasn’t an option for me. So, I decided to continue to live my life with the terrible pain and symptoms, with at least the understanding that I knew what I had. As the years went on, the pain and symptoms only became worse, as with the treatments I received from my gynecologists. Most of them recommended that if I didn’t want a hysterectomy, I had to take other medications or undergo other surgical procedures, the effects of which were often worse than the Endo itself. The most common solution was to take birth control pills, but I couldn’t take them because I always experienced terrible symptoms, such as constant migraines, swollen legs, and nausea. I also came across one gynecologist, who after my first visit, recommended that he “burn” my Endo through a laparoscopic procedure. He also told me that this procedure would help my chances of getting pregnant. I was 24 at the time and recently married. So, although it seemed like a hasty decision, I felt desperate to follow his advice. However, after the procedure, I had a burning sensation in my pelvic area that never did go away until many years later. No doubt the worst treatment I ever received was taking Lupron, a medicine that caused my body to go into menopause. As my gynecologist explained, the reason for taking this medicine was that it would stop my menstrual cycles, which would relieve me from the pain and other symptoms caused by Endo. My gynecologist recommended that I should have this treatment for one year. After only a few months, I developed severe menopausal side effects, such as hot flashes, night sweats, mood swings, hair loss, insomnia, migraines, and vaginal dryness. But most significantly, I lost my peripheral vision in both eyes, and I had symptoms that mimicked Lupus, such as loss of muscle control and constant achiness all over my body. Of course, my gynecologist and the other specialists I saw each denied that Lupron was the cause of my symptoms, even though I had read otherwise. So, against the advice of my gynecologist, I decided to stop taking the medicine. Although I never regained the loss of my peripheral vision, most of my other symptoms thankfully resolved. But as I felt better from the terrible effects of Lupron, my Endo symptoms had quickly returned. As the Endo developed further, I started to experience more residual effects, such as stomach or intestinal pain. This meant that I had to see the gastroenterologist almost as frequently as my gynecologist. Unfortunately, they too knew very little about Endo and how it could affect my body. As a result, I had to undergo several gastro tests in order to look for suspected diseases like colon cancer, irritable bowel syndrome and Crohn’s disease. In the end however, none of these gastro diseases were ever confirmed, and I was left with even more questions in my mind as to what to do next. Perhaps one of the my saving graces from Endo was that I was able to become pregnant in 1999, which for me was nothing short of a miraculous gift from God. Throughout the pregnancy, my Endo symptoms had completely subsided as if I never had the disease. Of course, I experienced the usual symptoms of pregnancy, but these were tolerable compared to my Endo symptoms. On August 2, 2000, God blessed me with the birth of my beautiful baby girl named Juliana. For me, having my daughter after all of the pain and suffering, as well as doubt in my mind to even think I could have a child, is something no words can truly describe. Fortunately, I was also blessed with good health even after the next few years of my daughter’s birth. However, like all good things, they must come to an end at some point, as my symptoms from Endo started to reoccur around 2004, almost without any prior warning. Most of all, they became worse than before; I menstruated heavily every two weeks, and experienced high fevers, terrible cramping, and was not able to eat at times due to the nausea. It was almost as if the disease had a mind of its own – that my pain-free symptoms from Endo were now over and it was coming back with a vengeance! When I went to see my gynecologist, he recommended that I undergo another exploratory surgery. Sure enough, the surgery confirmed what I had already knew -- I had Stage IV Endo. But most frustrating, he did not remove any of the Endo. Instead, as I was laying in the recovery room, he decided to inject me with another shot of Lupron despite my prior reaction from the medication! When I told him to stop giving me the medication, he recommended that the only other option I had was to have a hysterectomy. Even my father recommended that it was probably time to have this surgery. By this point, I felt helpless and stayed away from my gynecologist as well as any other doctor. Could you blame me?! Of course, even though I stayed away from doctors, I couldn’t stay away from the Endo, which by 2006, progressed to the point that I could not function on a daily basis. In fact, I had lost 30 pounds over the course of just a few months because I felt terrible abdominal pain and cramping whenever I ate solid foods. So, I was restricted to a liquid diet, such as soups and protein shakes. I also visited the emergency room almost twice a month due to the pain. On one particular occasion, I had collapsed on my bathroom floor because I felt like something was ripping inside of my stomach. Luckily, my daughter, who was 6 years old at that time, was able to call 911 to get help. As the pain increased, so did my medications. I had to take stronger medications, such as Percocet, Vicodin, or Tramadol, often in combination, just to obtain some form of relief. But taking these medications came with a serious price. I felt drowsy and weak all the time, and they caused severe constipation, which prevented me from eating anything at all, even liquids. So, there were times when I couldn’t eat anything for days, with the exception of taking my pills. As I struggled with Endo, particularly within the last year, nobody really understood how it took a toll on my life, especially with the everyday demands of my family and work. Because of my pain and the side effects from the medications, I couldn’t do most of the things that I use to, such as performing house work, exercising, playing with my daughter, or even having the desire to go out with my family. I often came home from work and simply collapsed on my bed from the exhaustion and pain. On the weekends, all I wanted to do was to stay in bed and not move a muscle. When I was at work (working between 60 to 70 hours a week), I had to somehow make it through the day, which was nothing short of a difficult challenge. On one occasion, I spent most of the day at the office vomiting in the bathroom. Although I told my boss how I felt, he gave me my garbage can to vomit and proceeded to reiterate how he needed me to complete my work. Thankfully, a co-worker saw how badly I was doing and took me to the hospital. On another occasion, I had spent the whole night at the emergency room. Due to an important meeting I had to attend at work the next day, I informed my doctor that I needed some pain relief so that I could be at the meeting. My doctor gave me morphine, but told me that the effects would wear off just in time so that I could get to work. The next thing I remember, however, was that I was lying in bed at home, and it was 11:00 A.M.; I had missed my meeting! Although I had immediately contacted my boss to explain what had occurred, he nonetheless gave me a written warning for not contacting him earlier. Ironically, my road to recovery began in the emergency room, where I had previously ended up so often without obtaining any results or answers. After explaining my nightmare to a medical resident, she recommended that I see an “endometriosis specialist.” My husband and I incredulously looked at each other and could not believe our ears. My husband then said to her, “What do you mean an endometriosis specialist? Does one actually exist?” She explained that while there weren’t too many, there were specialists who could offer many other options besides having a hysterectomy or taking medications, such as Lupron. So, over the course of the next several days, my husband performed research to learn more about Endo and the other options to treat it. During his research, he found out that a hysterectomy did not always cure Endo. Of course, no doctor had ever explained this to me. Rather, they always told me that unless I had this surgery, I would always live with the symptoms of Endo. He then found out that Endo might be successfully treated through excision surgery. Luckily, he came across a website called, “Endo Victims,” which provided, among other things, a list of Endo specialists. It was at this site that my husband learned about the doctor that would do the surgery. When I went to see Dr, I felt skeptical because I didn’t want to put myself in a position where I would be let down, as I had been so many times before. Also, after having the disease for so many years, I didn’t even know if I could be candidate for excision surgery, or whether it would even work. But the Dr. tried to quickly gain my confidence. He explained how all of the conventional treatments I had received over the years essentially did nothing for me, because they did not take out the Endo. Most importantly, he was confident that he could do the excision surgery, and that I would feel much better afterwards. Today, it has been only a few weeks since my surgery, but I still can’t tell you that everything is ok. It seems like I’ve developed scar tissue from the surgery which now has caused me to be in even more pain (who could’ve ever thought). I will let you all know how it goes being that I have another appointment with another specialist to make sure that nothing else is going wrong. Anyways, after this long journey, I now feel compelled to help other women who suffer from Endo. By helping to provide comfort to others that they are not alone in their journey and if we speak out about our pain maybe congress will recognize endometriosis as a debilitating disease in which we need to find a cure for the women who suffer and continue to suffer this disease.


Name: Kelly
E mail: calibee.21@hotmail.com
Location: New Zealand
Date: Feb 2007

I am 21 years old and it has only been until recently, that I suspect I may have endometriosis. I remember getting the painful cramps, as early as 10 yrs old on and off, three years prior to getting my first period. At school, I would lie on the floor in excruciating pain, and many times my mother would need to collect me from school, or otherwise I would go off to the sick room and sleep the whole day away. Although for the first few years of getting periods, I was fine, I would only get that bloated feeling a day before menstruation, and have no pain, and it's been for about the last 4/5 years that I'v been experiencing the pain again. Although I only have the pain for 2 days max. I still find myself once a month locked in the bathroom for hours on end, with diarrhea, vomiting, in cold sweats and with tremors (and that unforgettable lower stomach pain, lower back and leg pain), and finally after exhaustion I end up falling asleep with a hot water bottle. I was on the pill for about six months, and the pain calmed tremendously, and managed to find a pain-killer which meant I could still go to work. It's only been since I moved to brazil with my partner, that I'm back with all the symptoms, and haven't managed yet to find something that actually works. I am taking the step to finally see a doctor about it. I am considering myself very lucky after reading some of the horrific stories that this nasty disease has done to others, and that it isn't controlling my life to that extent (yet!), but I am wanting to get it under control before it gets worse over time. Any advice or comments will be much appreciated. Thank you Kelly.


Name: Karen Smith
E mail: keeweesmith@yahoo.com
Location: Ireland
Date: March 2007

I would like to say I am so pleased to know that I'm not losing my mind, and that there are women out there that feel like I do. Everyday people have no idea the pain we all go through.... Here is my story..... As long as I can remember I have always known about Endo. My mother at age 16 had it. And was in and out of the hospital almost all of my life. The thing is no one talks about there periods! How are we supposed to know if it is "normal" or not? So we suffer in silence, passing huge clots, crying on the floor curled up like a baby. We take loads of Asprin hoping that the pain will go away. Call in sick from work, or school. As for me I stay locked up in my house. I throw things when I just can't take the pain anymore. Then I fall to the ground sobbing my eyes out. Praying for this nightmare to all go away. At 24 I started noticing things in my body were different... My periods were starting every 2 to 3 weeks. Heavy bleeding so much so that I couldn't leave the house for the first three- to four days. My breasts would swell up to 3 times there size. And they felt like they were on fire. My stomach looked like I was 9 months pregnant. I had a low grade fever. I couldn't have sex with my husband anymore. I was tired all the time. The 1st doctor I saw just treated me for constipation. You name it I drank it, took pills for it, stuck things up there...lol Went to the emergency room too many times to count. They took several x-rays that showed my pain was only caused by my constipation. Or they said I had PID. They gave me a course of antibiotics to take and sent me home. The next doc I saw looked at my old x-rays and found that I had fluid in both of my lungs. So she sent me to have an MRI done. Which also came back with the same findings as well as fluid in my abdomen. Then I was referred to a specialist who was the same surgeon that operated on my mom. He barely touched me and he knew that I needed surgery. If you're wondering how long this all took, it was 2 years of people esp. doctors who thought that my pain was all in my head. Or you just have IBS or PID. Take this medicine this should help. Here is a new kind of birth control pill or hey how about Lupron. Or you are too young to have a Hysto. Come back and see me when you are 35 or 36. What the HELL are we supposed to do? I was losing my friends because of this damn disease. Not to mention my husband he had no idea what to do for me. He couldn't understand why I was sleepy all the time. He just thought I was lazy. My mom tried to help me but she felt gulity for passing this on to me. So she wouldn't talk about it with me. So I really only had myself to get though this. So now I'm 28 living in Ireland in pain every freakin day. Wanting to pull my hair out. I can't enjoy being in a new country because I can't walk for too long, or it hurts to sit down on my (PARTS) or the meds I'm taking make me sick to my stomach, gain weight, or have a headache. What happened to the girl who loved to kickbox, and go rollerblading? I miss her. My good days are very few. And believe me when they happen I go until I can't go anymore. I smile, laugh more, love more..It's really sad what happens to us all. Not remembering what it's like to not be in pain. Right now as I'm typing this I'm bloated and feel like my insides are burning. I have an appt. on March 27th in Dublin. I'm ready for the next step to have a complete hysto. because that is my only option. I have tried and done everything...and I mean everything under the sun. I wish all of you nothing but the best out there. God does have a plan for us. Not sure just what that plan is just yet. LOVE AND HEALTH, Karen Smith


Name: Teresa
E mail: tmiles@uslink.net
Location: United States
Date: March 2007

Hello everyone! I've read your stories and they make me cry. My story is still very much in progress, as are most of yours. I'm 36 yrs young and was officially diagnosed with endo June, 2005. My story starts with the pain of not being able to have my own children. I struggled for thirteen years with infertility and am now just understanding how the endo was a factor in all of it. I desperately wanted my own children. I had other issues which complicated my dream also. I am a rape survivor and my rapist left me with chlamidia, which can damage your reproduction organs. I was also tolled that my uterus was mis-shaped and I had a blocked left F tube. My periods as a teenage were very sparse! Maybe once to three times a year and for only a few days or so. I was also seventeen when I finally did start to menstruate. This caused problems of its own, because my dr said he was worried about cancer with my periods so erratic. I did get pregnant only to miscarry when I was four months along. I was pregnant with twins! After that I could not conceive again. My pain of not being able to carry my own children was more than I could bare! But it was through my husband that we finally did become parents! We have adopted three beautiful girls and they ARE my OWN!!! I thank God for my blessings. Shortly after adopting our first child I needed some closure on the issue of birthing children, so for my own emotional wellness I went in and had a tubal done. One year after that I went in to have a hysterectomy. My dr should have noticed the endo then, but of course didn't and I went years before I would get any conformation as to what was causing my pain. Three years later I was having pain on my right side. The pain was so bad that we decided to do a laporoscopic surgery to determin what was causing the pain. Yet again the dr failed to see the endo and when I woke up from surgery they said that my right ovary was removed because it had become embedded into the tissue and was causing the pain. They tolled me they would do nothing with my ovaries in this surgery and wait to talk to me about what I would want done if something was wrong (so much for that plan!). Four months later I was again having pain. The dr who did my last surgery was trying to convince me that it was IC(interstital Cystitis). I decided to seek a second opinion and found out that it was not IC and that it could very well be endo! I found a specialist in this area and had another surgery exactly one year after the last surgery. They confirmed it to be endo and had to remove endo from my left ovay. It was only four months after that that we had to go back in and remove the last ovary. I was in some much pain, I couldn't take it anymore! I had three young girls to take care of and was unable to do much of anything. I was hoping that all would be well after this surgery and I would just deal with the menopause! Not my luck. IT's three and a half months since my last surgery and I'm having pain again! I don't know what will happen now. I can only pray that God will heal and I'll find the right course of action to take that will be best for me and my family! I hate having to miss out on fun with my girls because "mommy is in to much pain to do anything". I will continue to seek out advice and hope that I will make the right choices for my health. If anyone has experienced pain after hysterectomy with BSO please send advice! I'm stuck as to where to go from here. I'm watching my diet and trying to exercise more, but the fatigue gets me! Thanks for listening. God Bless.


Name:Kristen Rupp
E mail: vagirlinsc23@yahoo.com
Location: United States
Date: March 2007

I am 25 years old and last May I was finally told what was causing me so much pain, extreme heavy bleeding, spotting all throughout the month, periods lasting longer than 2 weeks; I have Endometriosis. I had a vaginal ultrasound done on a Wednesday and the following Wednesday I was scheduled to have Laparascopic surgery done. I think I was in surgery for almost an hour. When my doctor went out and spoke with my parents, she told them that she found severe endometriosis and that it was highly unlikely that I would be able to have anymore children. At that time, my son was a little over 2 years old. I had already spoken with my doctor the day of the ultrasound about surgery. She recommended the laparascopic surgery be done first. I asked her about a hysterectomy. She stated that I was too young being only 24 years old at the time. After the surgery was complete, I stayed for several hours in the hospital then went home. Thinking that I would be able to return to work the following Monday, I rested and stayed in the bed the rest of the week and throughout the weekend. Monday morning came and I got up feeling worse than before, but went ahead and got ready for work. I ended up leaving work after only being there for about 3 hours; from pain and tiredness and just feeling like crap. I ended up being out of work an additional week and in and out of the doctors office every single day that week trying to figure out what was going on. Finally on that Friday my doctor did a pelvic exam and it hurt 100 times more than they usually do. She then figured out that I had an infection in my uterus from the surgery. I was placed on antibiotics for several days and finally started feeling somewhat better. It has been almost a year since my first surgery and I am feeling like I did before I had the surgery. I constantly hurt, I have periods that are lasting up to 2-2 1/2 weeks with extremely heavy bleeding, I pass clots that are sometimes the size of small golf balls and the pain is so bad, it makes me feel like I am in labor again with my son. The pain shoots from my pelvis and lower back into my thighs and legs. I have days where it's so bad, I can hardly stand up. The doctor wanted me to do a 6 month course of Lupron injections. After doing lots of research and reading everything that I could, I decided against it. The pros of the injections were great but the cons outweighed the pros a hundred times over. I chose to go on birth control pills instead which have not helped at all. I have since moved back to my homestate and am in the process of going back to my old ob/gyn. I feel very lucky and blessed to have been able to conceive my son when I did and I have no further plans of having anymore children. I feel like my best option for me would be to have at least a partial hysterectomy and remove my uterus. I have spent many long hours doing research on hysterectomies and the pros and cons from that kind of major surgery. I know that most doctors would say to wait and see how thing's are in several years but my feelings are I do not want to go through this kind of pain and hell for the next 20-30 years and finally end up having to have a hysterectomy. I am not sure what the outcome will be to all of this for me personally, but I truly hope that in the future, a 100% cure will have been found for this horrible disease. I would not wish this on my worst enemy.


Name: Jessica Masters
E mail: ja_masters@yahoo.com
Location: United States
Date: March 2007

Bladder Endometriosis/Pelvic Pain I started having terrible periods as a teenager (you know, the usual pain, hot flashes, nausea) and as a result was on oral contraceptives until I got married and tried to have children. My husband and I tried for 2 and 1/2 years with no success. Meanwhile, my periods got worse and worse. I was literally on my hands and knees in the kitchen trying not to throw up and pass out from the pain each month. Then another fun symptom cropped up. I had extreme urinary urgency and terrible abdominal pain and bloating all of the time along with constant vaginal bleeding. I saw my urologist and gynecologist. First I was sent to the ER because they thought I had appendicitis which was NOT the case. Then I was put on antibiotics for 4 months straight even though all of my urine cultures were negative for infection. After listening to several urologists tell me it may be interstitial cystitis or "all in my head", I found a gynecologist that told me I probably have endometriosis. He did a laparoscopy and found it all over my bladder, uterus and uterosacral ligaments. He only burned the surfaces of them though so the surgery was a failure. He tried to get me to take Depo Lupron and I refused. Depo Lupron is NOT a cure for endometriosis and the side effects and cost are not worth wasting your time. It is used to treat symptoms temporarily and does NOT make the endo go away. I am still having terrible urinary urgency, pain and am very depressed. I am now going to see an endometriosis specialist that is going to cut out the endometriosis as well as the endo cyst on my bladder. I have been to many doctors in this whole process and have been very sad and frustrated. I have found that diet, massage therapy and exercise are the only things that help me right now. My heart goes out to every woman that suffers with this disease and those that don't know they have it yet. You need to be persistent with your doctors and if they are rude or won't treat you GET A SECOND OPINION. Most gynecologists are not properly trained to deal with endometriosis. They are paid 2 to 3 time as much money to deliver babies than to do endo surgeries and would rather not "deal" with patients like myself with endo. Just don't give up, find a specialist in endometriosis and you will eventually find the answers you are looking for. I will add more after my second surgery.


Name: Rachelle
E mail: miss.yvi@hotmail.com
Location: Australia
Date: March 2007

I'm 19 and was diagnosed at 14, although they think i have had endo since i was 11... I have had 5 operations in 5 years. Each was the "last resort". I have constant pain, and I'm in the ER every few months because the pain is so bad I can't stand. I have tried everything (except those they wont give me because of my age) even natural therapies and nothing has worked. doctors have now given up even trying to look for something to stop the constant pain and the only suggestion they have is to have a family as soon as possible. I go to work every day and try to put on a smile. They tell me that i should go home when they see the pain show through, but I know that if every day I was in pain I stayed in bed, I would never get up. So now I spend my nights surfing the web, trying to spot some "new developments" that may actually work for me..



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