My name is Larissa, I am 17 and I am suffering from Endometriosis. It all started when I was 12 years old, they put me on birth control at 12 but it didn't help. I was in and out of the hospital so much that the nurses knew who I was, I had about 15 to 20 different test done. I had gone to a specialist and all I got from them was that I need to have 3 different diets, and that it was all in my head. I had my gall bladder removed when I was 14, I had tissue upon tissue upon tissue covering the whole thing.
They thought it was a very rare disease of the Gall Bladder. My pain had gone away for a few months, but was back. We couldn't find out what was wrong with me until 2 years later. We went in and asked my Doc. for a laparoscopy but they said I was A- symptomatic, but they would look into it. My Doctor wanted to do a pelvic exam first, but I didn't want to, I was so scared. He looked at me and said he was just going to do the surgery, that I had been suffering way too long.
Sure enough I had Endometriosis; we found out that it had attached itself to my gall bladder and pretty much took over. I had all ready done the birth control, so we did the Depo. shot for treatment. That was the worst time of my life. I gained weight and was grumpy and it didn't help my symptoms. We asked if we could do the laser surgery, but my Doctor wanted me to do the pre menopause. I wasn't going to do it, and never will. That was 2 years ago, my Endometriosis has not got any better.
I have a very hard time eating and keeping my food down. My body hurts all the time, I'm getting sick almost every month, I get really bad headaches, and get hot at random times. And at times it hurts to breath, because my pain is so bad.
I am very glad I found this site, it has helped me a lot, and gave me an understanding of what Endometriosis is. And I got a few specialist out of it. So I want to say thank you for putting this site up.
I was fourteen and this time last year, I had no clue what endometriosis even was. I have a history of female problems in my family. Endometriosis, cysts, tumours, fibroids, cancers, polyps, you name it... we have had it! I have had my period for about 5 years now and from the very first day to now, I have always had tons of trouble with it. For almost 2 weeks out of every month you could find me in my room, curled up in a ball, with all of the lights off. I hurt so bad, like I don't even know how to describe it.
At first, I thought that all the symptoms, and the heaviness was normal, that every woman went through it. But after comparing my period with other women and doing research, I realized that what I go through is definitely not normal! So I went to my mom and told her to schedule a doctor’s appointment, and, being the wonderful mom she is, she scheduled a doctors appointment the next day.
My first appointment was just me telling her every problem I was having, and she made me an ultrasound appointment to see if I had any abnormalities on my ovaries... which there wasn't. So a few doctor appointments later... My doctor told me that I had endometriosis. I really didn't know what to say except ask what we could be done for my pain. My doctor put me on ortho tri-cyclen. She told me it would help my pain, and my extreme heaviness.. But it's not really done anything for me yet.
I am 29 years old and was recently diagnosed with endometriosis about a month ago, although I'd been suspecting this disease for about a year now. I have always had problem periods, specially the first day of my period that announced itself with low back ache (I rarely had abdominal cramps). For me cramping meant having to take medication every 6 hours for approximately 2 days and using a heating pad on my lower back.
My mom always told me this was normal, that her periods were the same problem when she was young and that I had inherited these painful periods from her. Anyway other than manageable cramps for a couple of days into my period I was perfectly good the rest of the month. Then 2 years ago I got married and on my honeymoon I started to feel a lot of vaginal itching which I thought it would be thrush or a vaginal infection. I treated it with OTC meds and it helped for a while but it came back. I didn't have any strange discharge or odour, it was only the on and off itching that concerned me.
I talked to my Dr about it and he ordered a culture and everything. Came back negative. He advised me to change detergents and he also suggested that maybe I just had to get used to unprotected sex. After 8 months of having this unexplained vaginal itching, I had my period every 29 to 32 days as usual (my periods were always fairly regular), I started to have low back aches and cramping as if I were about to have a period except that I just had one a couple of weeks before.
The low back ache lasted for more than a month and along with this a bunch of things started to add up to it month after month. I started having severe PMS, very oily scalp, shooting pains into my right buttock and down my right leg ( My right hip and knee hurt like joint ache), mood swings and when my period was proximate I started to cramp really bad 5 to 10 days before. All of these strange symptoms suddenly emerged overnight and got worse and worse each month.
I saw 7 different doctors; I got diagnoses like IBS, chronic colitis, PID among others. Because nobody could give me answers, I went on the Internet day after day and when I googled my symptoms the first word on the results page was always Endometriosis. One doctor did mention endometriosis but was not very convincing so finally, I opened up to a couple of friends who turned out to know women with the disease, and that's how I met my wonderful Dr who performed my laparoscopy a little over a month ago.
He found endometriosis stage 3, I have it all over my ovaries, tubes and cul de sac. He burned it away and I immediately started zoladex injections for 6 months. I just had my second injection, I've felt so much better than before the laparoscopy, and the doctor gives me very good odds of becoming pregnant. I just hope I can have a baby one day and live the best as possible with this frustrating disease. It is really important to have a forum like this were we can find support and know that we are not alone. I wish you all health and happiness and don't give up hope!!
Reading the stories of other suffers made me feel so much better and not like my symptoms are imagined. I have had endometriosis since I was 14 years old when I started my period. I lived with the pain until I was 27 years old. It was discovered by laparoscopy that I had it in my Pouch of Douglas plus on my fallopian tubes. They cleaned me up, put me on medication Danazol which they allowed me to stay on for too long eventually.
I could not take the disruption to my life any longer and opted for a hysterectomy at the age of 33 and no children. I had surgery after the hysterectomy for what my gyno described as a minimal endometriosis. I then went back to the gyno with a endometrial cyst. This same gyno said don’t worry it will be gone in four months. I believed him and took no further action; now 12 months later I still have the cyst although smaller, but I have even more pain and discomfort in my pelvis.
I am sad and angry that I was treated so badly by this gyno so now I am waiting for another visit this time to a different gyno one who I hope listens to me.
Nobody to hear me, No body to understand. Am I living in my own world of hypochondria? Am I silly believing my distress? Or should I believe the word that others speak to me telling of their pain. My shoulder hurts, my leg gives me problems if I work it too hard. Nobody understands my distress they tell me, yes I have that too. But do they really lay home alone at the onset of a period that lays them in their beds.
Nobody understands the problem of using ones bowels can start a cycle. A cycle of agony that we wish we could stop. Nobody cares when we cry in the night for the peace and a good night’s sleep. Nobody hears as we wish and we pray that it was all in our minds and some drug would take it away.
But alas we who suffer all know the truth, the pain is real and we know that we would give anything to make it a fantasy. We are the heroes of so much distress, we bear it, we embrace it out of fear. We fear the judgement. But it’s time to listen and hear we are the heroes of Endo‘s doubts and fears. God bless my sisters I love you and hold you so, so dear. In this pain of Endometriosis that we wish would disappear.
Trinidad and Tobago
My name is Leslie-Ann and I am 24 years old. I have been suffering from symptoms since seventeen years old. I am also a teacher and sometimes its hard for me to stand in front of a class with so much pain. I am from the island of Trinidad and Tobago. I suffer from PCOS and fibroids as well. I have been to many doctors about my symptoms and they say it seems to be endometriosis. The problem is that it cost a lot of money to run diagnostic.
So I recently joined a public clinic at the hospital. The cramping comes before and during menstruation. I also have bad lower back aches and IBS. My legs become weak and I sometimes feel like I could fall. Any sort of movement or vibration to my belly increases the problem. I feel so clogged up inside. I started using a NSAIT drug called cataplam to ease the pain. I took it for years and became addicted because of the symptoms. I later developed an ulcer and problems with the stomach which nearly cost me my life.
My doctor stopped me and now I am using a weaker drug but it don't work that much for me. I have never tried to get pregnant so i don’t know if i am fertile. I just wish that I can get treatment for this disease that is causing so much trouble in my life.
I am 23 years old and I am at my wits end with this problem. It all started when I was about 13 years old and I had very irregular periods with heavy bleeding and severe pain. I was put on Depo and other Birth controls as treatment and nothing seemed to help. I had my first laparoscopic surgery for a dozen small cysts and 2 softball sized cysts and endometriosis. Then back on medications to try to prevent everything from coming back. Well I have had 7 surgeries now and I have been on so many medications to many to list.
I feel like a guinea pig sometimes. I was even forced to switch high schools my senior year because I was missing so much I wasn't going to graduate on time. I went to a smaller school and graduated on time, but during that time when I was 17 I was put on progesterone then Lupron so I had major mood swings, hot flashes, basically all the side effects of menopause but at 17 years old.
I was very sick and mentally drained and I was seeing a therapist at that time provided by the school. I had to drop out of my first semester of college because of my problems but I am now finally a college grad! It has been very hard for me through out the years I have to plan for my periods and take the time off work since they are so severe, but I still get breakthrough bleeding. I have just been feeling very sad these days and I need someone to talk to who is not part of my family or one of my friends, because it seems like everyone feels bad for me but no one understands the constant pain I am in, and the mental toll it takes on me.
I don't want to be a burden to anyone and I don't want people to feel bad either. I just wish someone knew what I was going through. I just had my last surgery in June 2010 and each surgery creates more problems with scar tissues and such. My ovaries each time they operate are covered with scar tissue and they have to be cleaned up and moved back where they are supposed to be. I have had to have multiple cysts removed each surgery as well as endometriosis.
I have been through so many tests but it gets me nowhere. I have even been to the Mayo Clinic is Rochester, MN. The only thing that seems to work is having surgery along with taking a birth control but that only seems to work for about a year or two sometimes less. Two days ago I was rushed to the emergency room for the amount I was bleeding, clotting and the excruciating pain. They kept me in the hospital for a day, ran a million tests and found out that all of my problems are back and I will probably have to plan another surgery again after the holidays, and I think that is why I am so down.
I was diagnosed with stage 1-2 endometriosis last July. I am 21 years old. I had struggled with extreme pain and heavy bleeding since my periods started age 10. I was convinced I was anaemic from the blood loss but every test came back negative. I would get extreme fatigue for no reason that just came out of no where and I would have to take time off school and lie in bed, which I now attribute to the endometriosis.
Age 17 i was diagnosed with ibs, which was maybe wrong, I would get bad stomach cramps and spend my free time in bed with a hot water bottle while everyone else was out living a normal life. My symptoms came and went - but with hindsight because I lost my periods for 2 years due to anorexia after my ibs diagnosis, so the lowered estrogen may have hidden my symptoms for a while. I never saw a doctor about my periods because anyone I talked to, including my family, told me I was just unlucky and like many people I had never heard of endometriosis.
It was then in January of 2010, after a year where I had started to suffer from increasing ill health - unexplained fatigue, infections, flu etc- that I started noticing what felt like period cramps for about four to five days in between my periods. This gradually worsened and after about 3 months I sought help. It took several more visits to my GP and it was not that I had passed out from the agony (after a second year university exam typically!) that got me a pelvic ultrasound but only that I had blood in my urine, because this was technically a cancer symptom.
The scan showed an endometriosis cyst which got me to laparoscopy. I woke from the surgery to be told the cyst had gone and was just a regular 'blood cyst’, probably, but that I did have endometriosis and that my surgeon had left it there!!!! I still don't understand why. I thought my problems would be over, or could be after that operation, but since then my pain has worsened. I have tried two forms of birth control, both of which I swear have made it worse. And I am now taking nothing, feeling powerless, abandoned and angry that no one seems to have heard about or remotely understands a disease.
My friends try to be understanding but they cannot understand, and then there are the people who think I am making a fuss about nothing or a 'freak', who don’t recognise that it is harder and harder to do well at my degree, to be in a relationship, to keep my old social life when you are in distress every day. I am terrified of the menopause treatment, which is what my GP is now suggesting. I don’t see how something so unnatural cannot cause more damage, but when I get depressed (which is often) about the endometriosis I do not have the will power with exercise, eating regime etc.
I worry if it would be good for me to cut out whole food groups when I have suffered from eating disorders for 7 years, and only recently 'recovered’ ( i was bulimic before then anorexia). But other days I feel I would do anything to no longer be suffering.
I am still finding it very hard to come to terms with diagnosis of endometriosis but have found this website really helpful, and am now taking some of the supplements recommended and trying to live a healthier life style while I decide what treatment to try. I cannot conceive of some of the stories and pain some of you have had on this horrible journey, and I hope I can have your strength.
I'm 15 years old and every since I started my period it seems that my usual symptoms become worse and worse each time. I have back aches, irregular periods, STABBING sensation on my sides whenever I run with my group (gymnastics makes it even worse), cramps 3-4 days before my period, and horrible back aching (not from gymnastics).
I live with my dad after my mother left 4 years ago and he isn't been very good with that sort of stuff and thinks I'm exaggerating, and hasn't been very supportive when I bring the doctor up. I have gone to one doctor but he said it was most likely an ovarian cyst that will go away or endometriosis. I had to do my own research to figure out what in the world it was. I just want a prescription to relive pain because I'm going to be a cheerleader next year (going for flyer :D) and that has to do with a lot of physical things.
I really don't care about surgery because I would be out cold during it, and the aftermath they have pain killers for. I just want this problem fixed now.
Stories - Page 38