Endometriosis Stories - Page 3More endometriosis stories from women around the world ...... Name: Sherry Ramirez Location: US Date: March 2005 email: luv2bemomof3@msn.com I am now 33 years old. I was diagnosed with endometriosis at the age of 30, right after the birth of my last child. I started to notice spotting and a little pain when ovulating and menstruating. It worsened with a lot of the pain radiating from inside out on my right side and out my lower back on the right side. I sometimes describe it as a feeling that something is eating away at my insides. I had a lap done in jan. 2003. Then endo was confirmed and lasered off. A few months later symptoms returned. I had tried 3 different birth control pills and had the lap, and it still returned. I decided to have a hysterectomy. I new we were done having children, thankfully. I had it done in Jan. 2004. I was pain free after recovering from the surgery for maybe 2 months and slowly started having pain again. They did ultrasounds and vaginal ultrasounds and showed nothing. My doctor decided to try me on the pellet injected into my abdomen to put me in menopause. It lasted a few months and i started having symptoms again. He decided to go in and remove my ovaries, fallopian tubes, and a 1 1/2 inch section of my vaginal cuff. When he got in there he discovered, even after having had a hysterectomy a year prior, my appendix was attached to my right ovary, and my intestines were wrapped around my left ovary. He was shocked at what a mess it was in there. None of the ultrasounds had shown any of this. He removed all he could see, along with my appendix, ovaries and fallopian tubes, and section of my vagina. I had this surgery in Jan of 2005. It is now March and I have begun, once again, to have symptoms. My doctor thinks I have microscopic endo cells and the only way to treat them is with the depo shot. I feel this has consumed my life and want nothing more than to have this monster out of my body. My doctor is now treating me with depo provera shots, in addition to my estrogen pills. I have heard bad things about depo and I am worried about side affects. I just got my first shot 3 days ago, and though I am worried about the side affects, I pray this combined with the estrogen will make me normal again. For my sake and my family. I truly feel for all out there who are living with this disease. Name: Magdalene Joubert Location: South Africa Date: April 2005 Email: Maggie_joubert@bat.com Wow one cannot believe there are a lot of woman suffering from this chronic disease, I am here to also tell you my story: It all started from 14 years of age, at school i would also have these huge cramps that would made me scream for days and it did not get any better, I am 26 years of age and have been almost married for 5 years, we have decided together that after we got married that I should go off the pill and that if the miracle happens so be it. Well after 4 1/2 years still no baby, something told me there must be something terribly wrong. Endometriosis was diagnosed, and in the last 2 years I have had 2 Laparoscopies and one laparotomy (to remove a huge growth off my left ovary). The end of the story is no new active endometriosis only blocked and damaged Fallopian tubes with no function anymore, adhesions/scarring almost all over down at my pelvis due to previous surgery. The only option that they have given me is to try the IVF, as you know this is very costly probably all over the world. I underwent another Laparoscopic procedure on the 2nd of March 2005 with two professors and it seems like most of the scarring has been removed and the Fallopian tubes, and they are now clear and free from growths. Thank you for all your stories, it makes one feel not so alone. Will keep you updated as I need to see my Gyne that did the last op to discuss the way forward. Speak soon Regards XXXXXXXXXXXXXXX Name: Nariah Davis Location: US Date: April 2005 Email: ndavis26@houston.rr.com Where do I begin with this nightmare. I started having my cycles at the age of 10.By the time I was in high school i noticed I was having very heavy bleeding and quite a few blood clots, my doctor said oh that’s normal my mother bless her heart would say lay down with a heating pad and take a couple of aspirins. So i just paid no attention and kept suffering with severe cramps, blood clots and bowel troubles and irritability and depression at times. My mother died after I finished high school I was only 18 at that time, and all hell broke loose. I thought it was because I was struggling to get over her death that was causing me to be sick but it wasn’t. I thought I had some kind of food poisoning, went from doctors to doctors checked my colon for polyps, nothing, just stayed sick and sick and pain and pain. I thought I was going to die at one time because I couldn’t keep any thing down. People even accused me of being pregnant . How in the hell can I be pregnant when I was still a virgin(no lie). I knew something was not right . I started having bloody stools, nausea, vomiting, huge blood clots, and very bad cramps. It got so bad that one day while driving home from school I had to pull over to the side of the road because the pain was so excruciating , oh by the way I was 22 years old at the time , so that meant more time had been wasted. Needless to say I went to ob/gyn at women’s hospital and he ran some tests, ultrasounds and the like and he could not find my left ovary because it is the size of a baseball, he scared me because he 1st thought it was cancer; I cried like a baby. Well any way after performing surgery he discovered it was endometriosis. And now I am 28 years old and the treatment option is estrostep birth control pills. Thank God the only side effect has been my blood pressure has increased. But I exercise regularly, eat right to help control that. I felt like I was the only one in the world that this has happened to but since doing research it’s comforting to know that you are not alone. The only thing I regret is that no one told me about these kinds of disorders earlier in my life. Maybe if I could have started taking the pills earlier I would have never gone through all this misery. Anyway I feel a lot better since taking the pill. I never knew that you could take the pill for medicinal purposes but I’m glad to know. You know the strange thing about it is one of my cousins has the same damn disorder and we are the same age. I wonder if it hereditary. She had a lot of the same symptoms I did. Now I just got to find something to get rid of this kelloid (scar) coming down from my navel , So I can wear some sexy swimsuits. ha! ha! ha! Well any way I hope that my story encourages someone who has been recently diagnosed. Name: Alica Location: US Date: April 2005 Email: etbutigergirl@msn.com Alicia is looking for advice as she has not had a confirmed diagnosis, but is adamant that it is endometriosis she has. Has anyone else had the same problem! Alicia’s Story: My name is Alicia George and I am 21 years old. I first began having pain in my lower right quadrant when I was 16. At the time, I was told that I was just having bad menstrual cramps. 3 days after my high school graduation, I was 18, I went to see an OB/GYN for the first time in my life. I discussed this pain with him but he dismissed it. Everything was normal he said. 2 weeks to the date of that 1st OB/GYN visit, I found myself in the emergency room at Good Shepherd Medical Center in Longview, TX. I had spent the night with a friend but I was in so much pain the next morning in my lower right quadrant that they took me to the ER and my mother met us up there. The doctors thought that I had appendicitis. I did a routine pregnancy test. I was not and still am not sexually active so, that came back negative. The ER Dr. did a pelvic exam and I also had a CAT scan done. I had to drink some watered down Tang stuff that lit up my insides. The results came back that I had something near or on the ovary. I was in the ER for 8 hours that day and the Dr.’s thought that I had just had sex for the first time. That made me mad because I am still a virgin and I am proud of that. This was 6/14/02. On Mon. 6/17/02, I went back to my OB/GYN. I was still in obvious pain when I went to that appt. The Dr. did another pelvic and said that he wanted me to have a transvaginal sono done the next day. I had one of those done the next day which showed that I had a cyst on my ovary. My Dr. gave me a prescription for Ultram and Ovcon 35, a narcotic pain killer that they give to their surgery patients. He also did a CA 125 that came back normal. I was scheduled to come back and see the Dr. again in July, one month later. I was having cyclic pain every 2 weeks in response to ovulation and my period. My periods got heavier. I went back to see the Dr. in July and the day I went, I was in sever pain. I could hardly walk it was so bad. My Dr. did another pelvic and we discussed that he might do a laparoscopy to find out the source of the pain. He scheduled me to come back in Oct. I went to my first year at East Texas Baptist University in August. I had continuous cyclic pain. I got to be really bad. When those days came along those times of the month, I couldn’t do anything because I was in so much pain. I went back to my OB/GYN in Oct. I was in pain again that day when I went in. I had run out of pain meds. And I asked for a refill. The Dr.’s exam was rushed and hurried and he didn’t answer any of my questions. I was very upset and angry because I was in so much pain. Turns out, he didn’t believe me about my pain, even though he saw it in the active stages because when I had my pain meds. refilled, he had given me a prescription for Tylenol. I was so angry. All I could do was cry. I called my regular Dr. who is a god-send and I was able to speak with him about the whole ordeal. I was crying the whole time but he was able to console me and assure me that the pain wasn’t just in my head. He referred me to another OB/GYN and my appt. was for the next week. I was excited about this visit because I wanted someone to believe me. This Dr. was very different in his approach. Before the initial visit, he sat me down in his office and discussed the outcomes that I hope to achieve and what I expected out of a doctor. He has held true to those standards set in that visit to this day. I found out that his nurse goes to my church and I know her. She is a very sweet lady. He then did a whole exam and decided to put me on Ovcon-50. He said to try that for 2 months straight, to not take to sugar pills. He asked if I had any more pain meds. to hold me over that long. I did. I went back to see him on Dec. 4, 2002. The Ovcon did not help any to relieve the pain. He decided that he wanted to do a diagnostic laparoscopy on me. I was hesitant about that but, I agreed because of the amount of pain that I was in. We scheduled a pre-op visit for 1/2/03 and my surgery was on 1/3/03. The Dr. did a quick pelvic and we had a discussion about expectations for the next day. Of course, I was really nervous being I was having surgery on my women parts and I was only 18 and I am in my fertile years and have always wanted kids. I asked him if he was prepared and he said that he was. I asked him to keep me a whole as possible even though he told me that if things were bad enough the he would do a hysterectomy. I had to consent to that in writing in front of him. As I was leaving, I asked him to get plenty of rest and to not go out and party. He laughed at me and said, don’t worry, I won’t.” We then went back into the waiting room to wait to meet with his surgical nurse. Our appt. with her was at 2 pm. Her name is Bonnie Eason. She called us back to her office. The first thing that we did was write a co-pay check for the surgery. Then, Bonnie let us watch a video about the surgery and about the disease. I thought that was pretty cool. We then discussed the movie and she answered any questions that I had. She then gave me a whole envelope of information and we went over all of that. It was what I could and couldn’t have and what to bring to the hospital and how to prepare for surgery the next morning and things like that. She asked me if I had ever heard of douching before. I told her no and she explained to me what that was and to not do that with my partner but to do a betadine one the morning of surgery when I was showering. She also gave me post-op instructions and prescriptions for pain meds. to go ahead and fill. She told me what to expect. I got a whole bag full of surgery goodies for the next morning. We went and did blood work at the hospital next. My best friend, Stacie Markum stayed the night with me to help me calm my nerves. Of course, I didn’t sleep well. I woke up at 5 am to get ready for my surgery. I did the betadine douche in the shower. We left for the hospital at 5:45 am and we checked in at Good Shepherd Ambulatory Surgical Center at 6am. Mom, dad, and Stacie all came. They took me back about 6:15 am and had me all ready to go by 6:45 am. The anesthesiologist, Dr. Dennis Beck came in at 7am and then we were just waiting on Dr. Lucas and Bonnie to come by. I was getting very sleepy but I wanted to stay awake. Bonnie came by to see me at 7:15 am with her cup of coffee. She acted like my mom and straightened my blue hat and joked that they were the latest fad as well as my blue feet covers. She gave me a hug and rubbed me and told me that everything would be OK. I asked her if it was early since she had her coffee. She said that she had been awake since 4:30 am. I said man you must be ready for lunch already. She said pretty soon but she was just kidding. When she left, Dr. beck came back in and gave me a sedative which made me even more sleepy because it really relaxed me. Dr. Lucas came in around 7:25 am to see me and he had his coffee with him as well. I asked him how his party went last night and he said it when fine as you can tell by this glass. I asked him if he got plenty of sleep and he said that he did. Of course he asked if I had any questions. I told him to get the show on the road. He said, “OK, I’ll see you in a minute.” When he left, Bonnie and my nurse that was taking care of me came back in and unhooked me from the wall and put the monitors on my bed. They asked if I was ready and I said yes. Mom had to go and sit in the lobby with dad and Stacie. They rolled me down the hallway and I had to scoot over on the surgical table. They put a bed warmer on the table and I made the comment of how nice that was. Dr. Beck told me that he did that just for me and that Dr. Lucas requested that and most patients don’t get that. I was warm. They started strapping me on the table. One nurse told me that she was going to put a seat belt on me. I was trying to watch what was going on and then I felt a sting in my arm. I voiced the pain shooting sown my arm and Dr. Beck said that was my happy medicine. It was 7:45 am by that time. Mrs. Bonnie told me to think of a nice place where I wanted to go. I told her that I had that thought and she said to hold that thought. At that time, I felt another twinge of pain and Dr. Beck put a mask over my face and both of them told me to go to that nice place. I woke up in a lot of pain and I was crying. The nurse gave me a shot of morphine and I was knocked back out. I woke up again in pain, and she gave me another shot and told me to wake up. I did and they made me drink something and I began dry heaving like I was going to throw up. It hurt so bad and I began crying again. Dr. Lucas and Bonnie stopped by to make sure that I was OK. I then went home. Dr. Lucas found adhesions near my large intestine on the right side but he didn’t find endo. I have all of the symptoms. He swears he looked and he said that there could be some hiding. I felt a little better after the surgery. My pain went away for about 1-2 months and then came back. He put me on Depo-Provera and I have been on that for 2 years now. I still have random bouts of pain. I always have it when I’m ovulating but it has subsided during the period time unless I’m getting to the end of the shot. I get a shot every 2 months instead of 3. Sometimes, I feel like a loser and that this is all in my head. I know it’s not though. This is real. I feel like no one can relate. My Dr. still does believe me and he won’t change his mind on doing another lap. or changing my meds. since depo-provera is sort of working. I have come to the realization that my life won’t be normal and that I’ll have to live part of it in pain. I have had a 3rd opinion done by another Dr. without giving her previous knowledge of what the Dr.’s thought. She basically told me that I was faking but she was late and her office staff were very rude. Please help. Name: Christine Taylor Location: US Date: April 2005 Email: ctaylor@ucdavis.edu Hi... I am writing somewhat out of hopes that someone will be able to help me. About a year ago I began having yeast infection after yeast infection and constant vaginosis. Then about six months ago I started having constant abdominal pain, which felt a lot like my right ovary was swollen. It went on for about three months and has now mostly stopped. Just the other day I experienced a stabbing pain on my right side, somewhat in the appendix region, that lasted for over 8 hours and made it almost impossible to walk and made it impossible for me to straighten my stomach. I used to have this same type of pain when I was 16, and I am now 20. I have had an ultrasound and a cat scan of my stomach and they both have come back normal. I am devastated at the idea of not being able to have children and it has made this last year of my life horrible. I keep going to the doctor and there is nothing... they don't know anything. Endometriosis has been mentioned as a possibility. I feel as though I have to be in constant pain for anyone to take me seriously, even though I know something isn't right. I have been on birth control since age 17 and have had regular periods. Therefore I don't know if I should agree to have surgery done or if I should just try and resolve it on my own. I would love to have some feedback if anyone has any suggestions... I am feeling very confused as to what I should do or what might be wrong with me... or as we all have been told, just making it all up. e-mail: ctaylor@ucdavis.edu – Christina Name: Sharon Tudor Location: UK Date: April 2005 Email: Sharon@mcordell.co.uk Well it all began when I started my periods at 9. Yes I know I was very young, but I can remember even before starting being in and out of hospital for stomach pains. After many years of pain and numerous amount of hospital appointments, I was told that I had IBS, cysts on my ovaries and that it was all in my head, I was diagnosed in 1990. I was told that there was no chance that I could have children and the best option was for a hysterectomy. I decided to suffer and before you know it I am 30 and have three children, one 8, 4 and 1. I have suffered for too many years and tried every medication going and am now scheduled to have this operation in August 2005. I am hopeful and I know that there are a lot of factors that this might not cure this horrible condition, but I will give anything a try not to go through this 3 weeks out of every month. I am so sick of being tired all the time and having no energy. Date: April 2005 Email: ramlallk@dohho.kzntl.gov.za Can anyone give advice, or have experience of using the Mirena coil for endometriosis Hi there, With regards to endometriosis my doctor advised inserting the Mirena is the wise option. I was suppose to have this done 3 years ago but heard some negative stories hence left it. A recent visit meant him reiterating the same advice. However, I have been looking up info & it seems many people had some terrible experiences. I have no kids but plan to have in the next 2 yrs. I’m' 27, medium built, height. Can anyone out there give me some advice please if you had it? I will really appreciate it. The side effects are worrying me as it incl. headaches, weight-gain, vomiting etc. I see it hasn't happened to everyone however its common yet I was told the mirena has little to none side effects. Please e-mail me. Thank you, K Name: Julie-Louise Simoneau Location: Canada Date: April 2005 Email: jlsimoneau@videotron.com I am a 30 year old stay at home mom with 3 young children, 6 Jessica 5 Alicia and 4 Pacey. I am very lucky that i got pregnant. I was told when I started my period at age 13 that I was a person who just had bad menstrual cramps, Until the day that I was in the shower and passed out my older brother came in picked me up and brought me into my room and covered me up and kept me warm. I had already been on the pill for almost a year. This was a normal thing for me. Dizziness, bloating, mood swings, the heavy period with big clots that were sizes of eggs. I had to wear 2 pads at a time to cover the back and front and this was during the day. With time and being on the pill for many years, In 1998 my boyfriend and I were talking about havin a family and I stopped the pill the first month I was pregnant. Still not knowing all this was endometriosis I gave birth Dec 24 1998. I was breast feeding when I got pregnant for Alicia, Jessica was 3 months old. Alicia was born January 7 2000. She was now 3 months old, Jessica was 1 year and 2weeks and Pacey was announced to be coming. My boyfriend soon after was operated because I was getting pregnant even when doctors said that when you breastfeed you are pretty much protected. After the Birth of Pacey February 3 2001, The pain was unbearable, I was even wondering if I had gotten so used to the pain the years before that it was all In my head I had not had a menstrual in 3 years because I was pregnant That now I was older couldn't take the pain. I would feel my ovulations and could tell what side I was ovulating on then I would start 1 week before with the very Bitchy mood swings the bloating the clothes would not fit. So it would be jogging pants or when we had an outing a not so fitted dress. Then the day of the period I have 3 kids who were at the time 2,1,newborn all depending on mommy; me at the side of the toilet bowl sick. I was just drained no energy to do anything but at the same time if I wouldn't do anything it would be worse. So I stayed busy all day pain and all taking just extra strength tylenols every 4 hours. Until one day my yearly checkup with my doctor who followed me for the pregnancies came up and I asked him for something stronger than the tylenols and he sent me for an ultrasound witch came back positive for endo. The person doing the ultrasound found it a miracle that I had had 3 children. I had many cysts. With these results my doctor wanted to try reduce these cysts with medication. The pain and discomfort were all there still. I tried the Depo-provera witch made me depressive at first it was working so I thought even if I am feeling down at least the pain and menstruation are no longer there. But then one day I wake up and I started everything back up, This period lasted 4 weeks and when I went to get my shot my 3 months was not half done that the doctor giving the shot seent me home without the shot and said wait until your time is up too much hormones are not good for the system. So we tried many things all but the operation because I am too young and it would cause other things. That now, since September 2004, (we are now end April) I have been on a pill that I take every morning called megestrol witch has not made me have 1 period since, But the weight gain is 25 pounds so far the cravings the sweets food chomping just to have something to put in my mouth. I saw my doctor last month and he laughed and said it is normal, I told you there would be weight gain like the other medication. When he came to write me up the prescription he looked at the name and said This medication is also used for anorexics and bulimics (sorry if misspelled) It activates the cravings keeps fluids so I can drink my 6 glasses of water a day but hardly go to the bathroom. So what is better the pain with all the other complications, or put on weight. I am so depressed all the time I could sit on the sofa all day do nothing, what a life. Name: Katie Location: US Date: April 2005 Email: katieboo25@hotmail.com I am sixteen years old and i started having pains in pelvic region. I went to the dr. and I had some simple testing done like urine test and an ultra sound. He told me my tests were fine and the pain was most likely causes from ovulation. When the pains didn’t go away for 2 months and my period didn’t come one of the months I didn’t understand. At track one day the pain was so bad I had to leave to go home. The next day my mom took me back to the dr. He referred me to another dr. that was my first time to a Gyno before. So now it is believed I have endometriosis, and in 3 months I go back and see how its coming along. So far nothing has gotten better but only worse. Each day I seem to develop another symptom. All I have to say This Sucks! I’m a little worried about it too. Well in 3 months I'll let you all know how it went. Name:Lindsay Location: Canada Date: April 2005 Email: mcgrawsgurl@msn.com Hi, my name is Lindsay and I'm 23 years old. I have been suffering from chronic pelvic pain since I was 16. At that time I had my first laparoscopy which found ovarian cysts and endometriosis, although the ultrasound had shown almost nothing! Since then I have had three other laparoscopys to remove everything, and each time the ultrasounds showed nothing at all and there was less to remove inside! So frustrating! It is so hard to have everyone think it's "in my head", and to get annoyed by me always saying "I'm so sick!" During this time I have been pregnant five times, three miscarriages and two beautiful children, I'm very blessed. But my pain still continues! I had my second child just four months ago, and I swear she wasn't a week old and the pain all came back. Fullness in my lower abdomen, constant pain on the right side, sometimes shooting down my leg or into my hip! And once again, the ultrasound was NORMAL! So, I declined another lap and have pretty much given up on ever fixing this. My doctors have all basically said i just have to live with it! Well, I'm sorry but having no energy, constant pain and fear of it being something worse is not a way to live! Anyone who has experienced this please email me!!!! I need to know that I am not the only one!!! Name: Abbey Gear Location: Australia Date: May 2005 Email: AbbeyGear@hotmail.com My name is Abbey and I have suffered with severe endometriosis since I started menstruating, I am 23 y.o and got my period when I was 11. We went from doctor to doctor with all the symptoms but they kept on telling me I would grow out of it cause I was too young. When I was 17 I had a laparoscopy to diagnose the condition. It was classed as severe with nothing they could do with surgery (the surgeon actually told them to sew me straight back up) only hormone drugs. Well as many of you who have been on hormone drugs know its like a roller coaster ride that you can't get off. My partner has been very supportive, but I know there are days when he would like to put me on the roof! I finished a hairdressing apprenticeship a few years ago and just recently quit my job due to the endo. My boss was at his wits end with taking time off, squatting out the back in pain, and generally not being well enough to cope with the 9 hours on your feet and no lunch work schedule. I now do some hairdressing from home but I have to be flexible to fit around the condition. Today I am having another operation for endometriosis and hopefully I will still have my fertility in tact afterwards as now I contemplate the likelihood of early motherhood (if any).I needed to get out my story to 1-keep me occupied before my op and 2-to let women know that your never too young for endometriosis no matter what the doctors say. They didn't think it was possible at my age let alone severe, but I have it and now they must deal with it. Most of the time I get sent from specialist to specialist because nobody knows how to treat endometriosis, and they keep telling me I'm a textbook case, so if anyone out there has had anything that has worked for them I would love to hear from you as I am willing to try anything. Every time I get sent to hospital they threaten me with a hysterectomy. I want to be a mother someday and any information would be appreciated. Name: Michelle Lonergan Location: US Date: May 2005 Email: wildwolf_20@hotmail.com Since I was 16 years old I've had major pelvic pain. I went to the doctor who told me that it was all in my head. NICE! Then when I was 21 I had my first child. Of course I had problems. Went into premature labor when I was 6 months. My child was born 6 weeks earlier. Then I got pregnant with my second child. He was born 6 weeks earlier. Come to find out that my placenta was aging faster then the baby. I still had the pain after that but nothing to worry about. Then when I was 28 I got pregnant again. I had to have a C-section because my baby was breech. During my C-section the doctors started taking pictures of my insides. When I asked them about it, they said that they seen something and wanted to get another opinion about it. Well after my forth child I had my tubes tied. Then at 30 my period had gotten really heavy the Pain was really bad. So I went to another doctor. She told me I was going through my change. That I didn't believe. So I got a second opinion. This doctor told me I had a cyst on my left ovary. Nothing to worry about. So I was fed up and thought I will just deal with this pain. But after 2 years it was getting worse! So the next doctor I seen said he was not gonna touch me, that I need to see a specialist. OK fine. So I see the specialist. He did an exam; which I almost punch him cause of the pain. He wanted to do a laparoscopy surgery. After I went through that, he told me that I have Adenomyosis and that I also have endometriois on my uterus. He said that the only way to get rid of this problem is to remove my uterus or if I can deal with the pain let it go. So now I’m scared. I know what’s wrong but to make that decision. If I let it go my uterus will continue to grow from the Adenomyosis. Plus he forgot to mention the endometrisois will continue to spread. He put me on nothing and basically said to get a hold of him in 2 months if I decide to get it done. Well the pain is getting worse and I'm not sure what to do. Any help here would be appreciated! Name: Barbara Austin Location: US Date: May 2005 Email: MaritimeBarbie@hotmail.com The first time I got my period, I was 11 years old. I had pains so terrible, I was doubled over. My pediatrician thought I had appendicitis, and almost admitted me to the hospital... and then, I got my period. I've had severe cramping every month since then. I get diarrhea when I get my period. My physician diagnosed me with IBS. I experience frequency, and incontinence. I have trouble breathing and shortness of breath. I suffer from fatigue and anxiety. Endometriosis had never occurred to me as a possible cause. I thought I was just depressed. Then, my sister was diagnosed with endometriosis a few months ago. She's 17. I'm 20, and I also have endometriosis... I was just diagnosed. The first gynecologist my sister went to told her that she was too young to have it, and she refused to do a laparoscopy, citing my sister's young age. I believe I've been suffering from endometriosis for the past 9 years. The moral of this story is that no one is too young to get endometriosis. If your doctor doesn't listen to you, find a new doctor, get a second opinion. Name: Chanda Location: US Date: May 2005 email: panda2753@yahoo.com I'm 31 I have had endo two times. I had a hyst first and the doctor said he got it all and it came back 7 months later and I had to have surgery again. It's been 5 weeks now I have to another one, plus my body makes scar tissue very fast on the inside. Name:Bethany Location: US Date: May 2005 Email: betho5@hotmail.com Hi my name is Bethany and I am 18 years old. I found out i had endometriosis about 8 months ago but I've always kind of known I had it. I've read about the symptoms from other women and I had very similar symptoms. The horrible cramps, the long periods, and heavy. Once I found out I had it the doctors and I scheduled for me to have surgery. it took about a month to get everything in order. When I had the surgery (aka laporascopy) they said they found a lot of it. They lasered it out and said it should get easier from then on with my period. well it's been about 4 months and still no ease with my periods. I don't know for sure but I think it's going to be hard to have kids. not to mention that I missed so much school I had to go into a special program so I didn't fail. I'm looking around to get a grant because there is not a chance that I can get a school scholarship now. I hope there is one out there I can get for having this horrible disease. Bethany Name: Bre Location: US Date: June 2005 Email: bunylove5@yahoo.com I know the pain all too well. I am 32 and I was full of endo and cysts, I had a full hysterectomy about 10 years ago. Let me tell ya... before the hysterectomy, I had so many surgeries, I lost count and I've been on so many meds, it's crazy. A hysterectomy is no fun, it takes a long time to find the right hormones for every woman. Finally_ the right one was found for me "Vivelle Dot 0.1" and it is MUCH better than going through all the pain. With the Vivelle, I have no hot flashes, night sweats, mood swings, I feel much much better. And to top it all off NO Periods! But... The main reason I am writing is not about me, it's about my 14 year old Daughter. She now is going through what I am, what most of you are.. but at the age of 14, she has already had the endo surgery and has had a cyst removed and has been on the Lupron shot for 6 months, my heart is breaking for her..her at age 14 and having night sweats, hot flashes, mood swings. On her 5th Lupron shot she started having bad pains again, no break though bleeding, but the bad pains are back. One month after her Lupron shot, she was switched to the Depo shot, its only been a few days since her Depo shot and she is hurting so badly. She was a Cheerleader, very active, all bubbly and now she cries all the time from being in so much pain. Thank God we Homeschool our children, because there is no way she could sit and walk all day without being able to take a break to lay down for a few minutes. Through her worst pains, her Dr. has put her on pain meds, but he has lowered the strength, we don't want her taking pain meds, but I know her pain, I know how bad it is. She is also on Anti- inflammatory meds. My worry is... all these shots of Lupron and Depo, I see what they are doing to her, she don't get to be the normal 14 year old she was because of her pain, but now she has to have all the side effects of the shots. I don't know what else to do. She has also been on the endo diet, birth control, now these shots! So, shots, Surgery’s, Meds.. all by the age of 14?! What’s next? Where do I go from here?! Only problem is.... I have been through it too, and I have tried everything, last option was a hysterectomy. Of course a hysterectomy is Not even an option right now, but I hope there something else that can help, before she gets older and has to have a hysterectomy. I pray something helps very very soon, because its painful enough for women, and even worse for a 14 year old that’s scared she wont get to be a normal teenage girl. She really is a Blessing to me, well, all three of my kids are! My 16 year old don't have these problems, and I pray to God she don’t ever! My 11 year old, is a boy, so he passed on that one. hehe! It does run in our family though, my Mom, grandma, and both sisters all has went through this, and my younger sister is on her way for a hysterectomy too. Anyway, if anyone has any more ideas, PLEASE, let me know? I cant stand my Baby hurting like this. Thanks and God Bless. ~Bre~ Name: Noreen Location: US Date: June 2005 Email: felines4me@hotmail.com I was diagnosed with Endometriosis in 1994 (Had BSO 2003 that wound up being only one ovary and HRT reactivated my Endo and gave me Cyst and made me very ill). I have been on Synarel in past and several versions of BCPs on/off for years. Over 1994-2003 span I exercised and practiced low fat diet (which I think has helped my endo not get too out of hand = I do not eat RED MEAT at all. 2003 45 told I had a mass and Unfortunately did not seek out 2nd opinion. The Gyn told me she was sufficient to do surgery and found TWO Tumors and thus told me after Laporotomy my tumors AND my ovaries were gone and She slapped an Estrogen Patch on me and gave me Prometrium as she Left my uterus. After July2003--Dec2004 and a whole Year & half of MIGRAINES, Heart Palps, LEG THROBBING PAIN and UTIS and horrific PMS and BLOATING and more than I can mention pains, I sought out 3&4th OPINIONS only to find out had the First Gyn Woman Doc not slapped me with HRT and WAITED 8-12weeks after surgery and ran a Blood TEST she'd had found out I DID not NEED HRT as I have OVARIAN REMNANT SYNDROME (portion of Ovary Left and due to the HRT fueling my body with an EXTRA HIGH DOSE of ESTROGEN I now have a COMPLEX ENDOMETRIOMA CYST that is being Watched by OF COURSE my 3rd and 4th Doctors. The HRT that the GYN administered to me I even debated with her and she got belligerent and told me "THE OVARIES ARE GONE AND THEY WERE THE CULPRIT, This amount of estrogen will not hurt you". Funny that somehow she learned of my Ovarian Remnant and my MIGRAINES and Pain and left me messages saying she was sorry and wished me GOOD HEALTH>she never called before when I called and needed her in past. I wound up being helped more by Family Doc and the other 2 last Docs(who are ANGELS in my BOOK) Be careful if the Doctor doesn't have YOUR BEST INTERESTS at heart then FIRE THEM. THEY WORK FOR YOU. I learned this the HARD way. I learned that Doctors do not ALWAYS know what they are doing. I shall pass on this: If a Doctor tells you that your Hormone levels are NORMAL when you are on any form of HRT then they are IGNORANT, If they tell you a D&C is needed when you complain about SIDE PAIN, They are IGNORANT, If they tell you YOU are just getting old at age 46 with BAD LEG PAINs (so bad you tell them your HOUR COMMUTE DRIVE HOME you drive with LEFT LEG) then that Doctor is IGNORANT...LEG PAINS I HAD could have given me a STROKE. Also I am STILL suffering MIGRAINES (WHICH I NEVER HAD until HRT) and I still have RELPAX, AMERGE & IMITREX. Also the GYN's ANSWER TO my upset from being on HRT and headaches and all was antidepressant. So........My ADVICE today is: 2, 3, & 4th OPINIONS CAN SAVE YOUR LIFE. THEY DID MINE - I am still getting my LIFE BACK after the First GYN almost took it. sign me, Thankful to GOD. Name: Lisa Location: US Date: June 2005 Email: hondahotte_02@yahoo.com I am 21 years old and have had this disease since I was probably 13. I always went to the doctor because I had horrible cramps, bleeding, constipation/diarrhea, nausea, etc. during my period. They told me that I just had IBS, but I didn't. Then when I was at 14 days (ovualtion) I would get stabbing pains on my right side like appendicitis. Whenever I went to the doctor they would tell me maybe, but pretty unlikely. I went to the doctor at least twice a month with these symptoms and pretty soon they told me that I just had an anxiety disorder and that I should go see a psychologist. I knew that I wasn't anxious, there was something wrong with me. Why couldn't the doctors figure this out? Then when I was 19 I began having sex with my fiance, but the pain and bleeding was just too unbearable. Not to mention, I never got pregnant. So, once again I went to the doctor. Finally I was getting somewhere. I was referred to GYN who suspected endometriosis. She told me to come back to have a laproscopy done. I was not raised in a family where we believe in surgery, so that was not an option for me. I have tried the birth control pill, Vicoden for the pain (which just made me more nauseous),and eating better foods. I haven't seemed to get any relief from this horrible disease. My family doesn't understand. They think that I am just a big baby or that I am over-reacting. With every period the pain just keeps increasing. Sometimes I get this paralyzing feeling in my lower back and I cannot walk. If anyone else ever gets this, I would be interested to know. (Thanks!) I feel for everyone that has to deal with this terrible disease, because I understand the pain. Name: Mariska Erasmus Date: June 2005 Location: South Africa Email: hyperpha@iafrica.com I am a 23 year old female with endometriosis. i have been diagnosed at the age of 16. at that age i was experiencing pain about seven days before menstruation till about three days afterwards. My pain gradually started to get worse and my gynaecologist suggested i had a laser to remove the endometriosis. I ended up having four lasers (laporoscopies) done before the age of 21. I changed my gynaecologist because I felt that he was doing nothing to prevent it from coming back as he has not explained to me that this is a chronic disease. My new gynaecologist explained the disease in detail to me and recommended that I go onto the Nur-isterate (hormonal two-monthly injection) to prevent menstruation from taking place. I have been on the injection for about two years now but sill experience pain with ovulation, and on the days my menstruation were supposed to be. I saw my gynaecologist on the 27/06/2005 because I started having constant severe pain, and getting married in April 2005 did not help because I now experience pain after intercourse, and sometimes with. He did a sonar and found that there are some growths again and that my uterus was the cause of pain. He advised me to take anti-inflammatory tablets at night and if the symptoms continues, that I will have to get another laproscopy and take it from there then. He also advised me that if I stopped with the injection that I will then have no chance of falling pregnant. He talked to me and my husband and told us that if we still wanted children that we should think of having them soon. I know that my situation is not a match to other peoples situations but please help. I don't know what to do seeing that my fertility is getting involved now. Name: Donna Randall Dare: June 2005 Location: UK Email: missrandall7788@hotmail.com I was diagnosed with Endo in Aug 2000, although I know I’ve had it since I was 18 , I am now 36. I self diagnosed my disease by reading info on the web and told my doctor I wanted to be tested for Endo, finally I was sent for a Laparoscopy and Endo was diagnosed, I was then admitted to hospital in July 2004 for lazering of the adhesions. I was in pain for a fortnight after surgery and my stomach was black and blue, it looked like they had a wrestling match with me on the op table. Anyway the heavy and frequent periods (20 days a month)eased off and I was only having 2 periods a month. Although they were still heavy I was only bleeding for 10 days which was such a relief although I still felt mega tired and exhausted all the time due to the blood loss, I was happier. Then 6 months on I started to feel all shaky and no matter what I did I could not warm up. I would shiver and the aching pains in the tops of my legs made me want to cry. I had lower back pain and it felt as if someone was squeezing my ovaries in and out. My periods haven't changed but are so much more painful it's become unbearable, and to top that off I now have irritable bowel syndrome as well. 2 weeks before and after my periods I want to just curl up and die. If I’m not on the loo all the time I’m in bed. My relationship of 8 years is under a lot of stress due to the lack of sex and the fact I’m ill all the time. My 4 children don't really understand what's going on and think I’m just a moody mum all the time, I have no energy left in me by the time I do the everyday chores of a mum I’m totally exhausted, but when I go to bed I lay awake all night in pain. I went back to my doctor in December last year and demanded to see a gynaecologist. Jan this year I saw the gynae and it was decided I need a full Hysterectomy. I’m due to have this on the 21st of July so wish me luck and I’ll be in touch to let you all know how it goes. bye for now. Name: Angeline Date: June 2005 Location: US Email: angelinebaldes@yahoo.com A young woman looking for support after finding she had endometriosis at the young age of 15 My name is Angie and I just turned 17. I found out I had endometriosis in October of 2003 so i was only 15 when I found out. Prior to that I had pains for as long as i can remember. At first my family doctor was at a loss as to what was wrong with me. First he thought it was a urinary infection, then my gallbladder, finally he suggested i see a gyn. After 2 months of nonstop tests and after changing birth controls 4 times, she suggested a lap. surgery. I was 15 my first surgery (in December of '03). She found 3 large cysts, and tissue, I had a sever case of endometriosis. I continued taking the bc but 6 months later i was in more pain than ever before. Needless to say I went back to my doc. For the second time, now being 16 (June '04), I went in for another surgery. This time it was worse. My doctor even suggested i get pregnant, said it would help get rid of the tissue. But only being 16 neither my mom or i was up for that. This time i was put on the Depo-lupron shot. It worked for a while. All good things come to an end. Come January 12, 2005 (my B-Day of all damn days) I went in for my third surgery. This time it wasn't so bad. My mother, doctor, and myself were relieved. We thought finally it would go away. I was doing great until recently. In May my doctor took me off the shot and back onto the pills. BIG MISTAKE!!! Before, on the shot, I was fine. Now, I’m miserable. Terrible stomach crams, painful bm's, back aches, and shooting pains all over in my nether regions. I'm miserable. I am only 17 and have dealt with it for the past 2 years. I hate to think what the rest of my life will be like living this way. It's miserable. Feel free to e-mail me at angelinebaldes@yahoo.com and tell me your story, or maybe you have any suggestions for me, what ever. Thanks for listening and i feel for all you women who are going through what I am. God Bless. Name: Michelle Harris Location: US Date: July 2005 Email: michelleharris@adelphia.net First of all, I will apologize as my story is lengthy but I have tried to condense it as much as possible. As many of you have mentioned, I also experienced heavy bleeding and extremely painful periods from the onset of menstruation. My doctors tried putting me on birth control pills several times over a 10 year period, but I was not able to tolerate them as I suffer from a tremendous amount of allergies (food, medications, environmental). I always suspected that I would be diagnosed with endometriosis as my mother suffered from it and had a hysterectomy at age 32. Prior to her hysterectomy, one doctor told her "it was all in her head". She didn't agree, found another gynecologist, and went in for surgery. She had a tumor the size of a grapefruit in her uterus. So much for it being all in her head. That was 27 years ago but the sad thing is that there is still no cure today and some doctors are still telling women it is all in their head. In my 20's, I suffered from painful periods, constant bladder infections, and intermittent pelvic pain but I had "normal" pelvic exams so my concerns were dismissed by physicians. Then I turned 34 and my body went to hell. Simultaneously, I was diagnosed with cysts on my right ovary that ruptured every month (extremely painful), 2 fibro adenomas in my right breast which required a biopsy, a bacterial infection, a yeast infection, a bladder infection, and excruciating pelvic pain. Plus, my periods were so painful, I couldn't move for 2 days and demerol didn't even touch the pain. I am allergic to aspirin and acetaminophen so I can only tolerate pure narcotics to treat my pain. I went in for my first laparoscopy in December of 2000. My doctor didn't find anything and told me not to worry. By March of 2001, I had my right ovary removed as I had continued to have cysts rupture every month and the only treatment I received for them was a trip to the emergency room and an injection of demerol. After surgery, I was still experiencing tremendous pelvic pain, and I also felt my uterus sloshing around inside. My gynecologist told me there was no way my uterus could be moving around, and that my pain was from a yeast infection. By July, I ended up in the emergency room at the Mayo Clinic as my period was so bad I was hemorrhaging. They could not find anything wrong with me and sent me home. My pain worsened and I called my gynecologist but she was too busy to see me. I was told I could only see the nurse practitioner. The nurse practitioner didn't listen to me and completely dismissed my pain even though I was in tears. She gave me a prescription for diflucan and sent me home. I demanded a referral to a specialist, and I never went back to that doctor again. Luckily, I found a fabulous doctor, Dr. Gordon Davis who specializes in the treatment of endometriosis and vulva disease. He has an incredible bedside manner and truly wants to help women. Dr. Davis was able to detect endometriosis via ultrasound at his office, and we decided to schedule my 3rd laparoscopy for August, 2002. During surgery, Dr. Davis excised the endo and also found that my uterus was severely prolapsed. Remember that I told my previous doctor I had felt my uterus sloshing around and she told me I was crazy. The endo had damaged my ligaments. So much for being crazy! One thing I have learned is that you know your body better than anyone and if you are not satisfied with the treatment you are receiving from your doctor, get a second opinion, or keep searching until you find a competent doctor who will listen to you. By March of 2003, the endometriosis was back. My periods were so painful that I couldn't move, I was extremely nauseas, I had lower back pain along with pain shooting down my backside and legs. My pain meds didn't even touch the pain. I had my 4th laparoscopy in April 2003 to excise the endo which was also affecting my bowels and causing painful spasms. Within 6 weeks of my surgery, the endo had already returned with a vengeance. Again, I was experiencing excruciating chronic pelvic pain, nausea, etc. I consulted with Dr. Davis, and with my internist (who is excellent) and I finally decided to have my uterus removed in July of 2003. The consensus was to keep my left ovary as it is very healthy, and it would regulate my hormones, as I was a little young to experience menopause. I had a vaginally assisted hysterectomy which has a significantly shorter recovery period than a traditional laparotomy. I had only been married a year but, neither my husband or I were interested in having children so we were both fine with my decision to have a hysterectomy. However, I know for many couples this is devastating decision to have to make. During surgery, it was discovered that I also had adenomyosis and an infantile uterus, along with more endometriosis and a large tumor inside of my uterus. I lost a lot of blood and was very anemic post-op (the surgery took 3 1/2 hours). Initially, I felt great after my hysterectomy and I certainly did not miss my periods. But, eventually the chronic pelvic pain came back. However, my doctor was unable to detect any endo at the time so I decided to pursue alternative methods of treatment. My pain management doctor referred my to a physical therapist that specializes in treating female pelvic pain. She was able to provide me with some relief as my muscles were constricted from multiple surgeries and chronic pain. I also tried various vitamin supplements that a homeopathic allergist suggested to me. I already have a restricted diet due to food allergies so I eat very healthy and I also practice yoga regularly. But, none of it helped. My pain continued to increase along with the nausea, etc. Unfortunately, I had only prolonged the inevitable. I went back to see my gynecologist in February of this year and discovered that the endometriosis was back once again. I had my 6th surgery April 26, 2005 and it took 4 hours as the endo was on my bowel, bladder, rectum, ovary, and pelvic floor. Adhesions had caused my bowel to be moved to the opposite side of my body and my ovary was almost in my vagina. Plus, the ligaments holding my vagina in place had been damaged so it had to be reattached. I have an extremely aggressive form of endometriosis and an obviously weakened immune system. I can't believe that doctors know so little about this disease and that there is no cure or viable treatment besides surgery. My goal is to raise public awareness of this disease and how debilitating it can be for many women in hopes that in the future a true cure can be discovered. Name: Nancy Location: Canada Date: July 2005 Email: naturalmed_1@yahoo.ca My heart goes out to all the women who have shared their stories. I was diagnosed with endo at age 34 after undergoing a laproscopy. At that time, some of the endometrial cells were removed. Prior to age 34, my menses had always been normal and I never experienced pain. I am not sure what suddenly happened at age 34, but it totally wrecked my life. The symptoms were SEVERE pain during menses, especially the first day. Pain was so severe and constant that I would black out. During my menses, there was a constant jabbing pain in my rectum. I had back pain and pressure in the vagina, anus, and lower abdomen. The pain was most severe right after a bowel movement or urination. Having a bowel movement was also painful. PMS involved flu symptoms so severe that I would be in bed for a couple of days. I was completely exhausted. Often sleeping 12-14 hrs per day during PMS. During PMS, I'd experience flu symptoms such as aching all over, chills, swollen glands, and even a cough. I thought I was coming down with a bad cold. Finally, at age 36, I had parts of my fallopian tubes removed due to the endo. This was devestating. However, the procedure put an end to the endometriosis (or so it seemed). I was pain free and PMS symptom-free from age 36 until age 42. Then my digestive system became a wreck with severe heartburn, bloating, constipation. I would often experience flu symptoms about a week before my period. The symptoms were same as before - exhaustion, chills, aching all over, sore throat, cough. Again, I thought it was the flu or cold; but these symptoms would completely disappear once my period started. At age 43 (Im now 44) I saw a Naturopathic doctor who treated me with supplements for the digestive problems and Chinese medicine for the flu symptoms and constipation. I felt MUCH better in just one week! My PMS symptoms disappeared for several months. I'm still being treated by the naturopath. Sadly, my endo symptoms have all returned this month. I cannot explain why. I will see my naturopath this week. Although the PMS symptoms are not full-blown as in the past, the severe pain of endo during my periods has completely returned. I am so discouraged. I thought I was cured of endo. This month I have lived a nightmare once again with my period. I don't know which is worse, enduring the pain or being 'cured' for about six years. My heart goes out to those with similar experiences. You are in my thoughts and prayers. Name: Lola Lediard Location: Canada Date: July 2005 Email: licorice@rogers.com Hi, my name is Lola and I'm now 34 yrs old. I’ve had endo since age 19,at age 21 I had a partial hysterectomy, than at age 23 had a cyst removed then at age 25 due to adhesions and endo. It also block my bowel wall had a complete hysterectomy they left 1/3 of an ovary left. I cannot have children due to it was to late when I found out and I would have loved to have children. Now at age 34 I have endo again they say they can't operate cause it's in the lining of my uterus wall in major organs parts.So now I take lupron I had my first shot 2 weeks ago. Still now feeling good my bowels aren't working great, the more I walk the more I swell up like I was 4 mths pregnant. Oh yah I also had surgery in January of this year to remove a cyst and endo. I've had so many laparoscopies in the last 10 yrs it's ridiculous. They’ve also cut the nerve endings in stomach long time ago but it didn't work. Right now I'm on estro-sense it helps endo and I'm trying the diet. Also I find taking a bath in Epsom salt helps a little. I’m still trying to work while going through this. I hope to find a proper doctor soon hopefully, but I take it day by day and put a smile on my face. I’ve been through a lot in my life all this stuff is just the tip of the iceberg. I'm lucky to have wonderful people around me but sometimes they don't quite understand. God Bless.......................... If anyone knows any info on diets or wellness tips or would like to chat write me please it would be great to here from you. Have a great day!!!!!!!!!!!!!! Name: Tara Location: US Date: August 2005 Email: b.tara@lycos.com I first started having problems with my periods on my 13th birthday, also the same day I got my first period. My step mom told me it was normal, cramps and heavy bleeding. I went through my first two years of high school being told I should be able to deal with cramps and that I couldn't keep going home because of them. One day my step mom decided to take me to the doctor and she put me on birth control. About that time my biological mom called to say she had been diagnosed with Endo. My doctor told me that I had all the symptoms and that birth control was how they treated it. After a year on birth control I began to have problems again. My doctor told me that some people reject birth control after a while and switched me to another. For the next 3 years I went through several birth control pills. 6 total. I gave up and stopped taking the pill. A about 6 months after going completely off the pill and my second year in college I began to get really ill with my period. I was engaged at this point and my fiancé had a hard time watching me go through the pain, upset stomach, fatigue, and emotional toll I was going through every month. He tried to get me to go to the doctor but I was sick of being put on another pill. A year later I finally went to another doctor who told me it was all in my head. I left in tears from that doctor appt. She wanted to put me on birth control, the exact same pill I had been on before that didn't help. Another year went by with the pain getting worse. I went to yet another doctor who again was going to put me on birth control even though it hadn't help. That was just in June 2005. I was once again devastated that know one was listening to me. A co-worker who had endo. gave me her doctors name and number. Desperate I made an appointment. She gave me an option of going on a different form of birth control other then the pill or having surgery. I opted for the surgery. I had the surgery last Thursday. They found endo, a lot of it, scar tissue, an ovarian cyst inside my ovary, and my ovary had grown attached to my uterus. I am glad I found some one who would listen to me. I am still recovering from my surgery but for the first time in a long time I have no pain. I don't think I realized how much pain I was in because I had become so use to it. It’s strange to go through a day and not have pain. I haven't taken any pain pills for my surgery b/c what pain I had was nothing compared to what pain I have been in. I know that this surgery won’t cure it but at least I know its not in my head and have a doctor who will listen to me and not just send me out the door with birth control pills. Endometriosis stories page 4 |