Endometriosis Stories - Page 2You can submit your own story HERE If you can help support or answer any of the queries in these stories do get in touch. Just a sympathetic ear can go a long way to help. Remember these e-mail addresses are not live to stop e-mail harvesting. Thank you. Name: Leigh LeRiche Location: France Date: March 2005 email: lleriche@mdsonline.co.za An update from Leigh – with GOOD NEWS!!! I have previously written in - last year - advising of my struggle with endo and how it affected my life... All my hubby and i wanted was / is to have a baby - well, we have been undergoing fertility treatment and had the insemination process twice, it never worked. We then saved up enough money and went along with the IVF (Invitro-fertilization). I'm now just on two weeks pregnant !!!!! We are over the moon, totally overwhelmed. I was at the verge of giving up hope, but decided to persist and pursue our dream, and it has finally come true, and we are being blessed. I will let you know how things go, and if I've been able to carry full term, which i'm truly hoping for. DONT GIVE UP FAITH, it will happen in due time.... All the best Leigh xxxxx I am sure all our hopes and prayers go out to Leigh for a successful pregnancy and a healthy baby – Lots of love and prayers to you, Carolyn Name: Renee Location: US Date: March 2005 Email: cfields@fuse.net Rennes’ bad experiences with her doctor – she advices you to get informed! As long as I can remember I have had pelvic pain. I was 11.5 years old when I first went to a OBGYN how horrifying, but I was in terrible shape. I was hemorrhaging with massive blood loss and pain. I was given a DNC, by the time I was 16 I was told that I had a molar pregnancy, but I was not sexually active at that time. I was scared and confused. Then they came back and said I had endometriosis and that it needed to be burned off!!! Many years I suffered and seen a lot of doctor's to get the closure I needed. I finally at the last result of my 30th b-day had a partial hysterectomy, leaving the left ovary, but the badly diseased one was the left and they took out the wrong one - that's a whole other story. Now that I'm 33 I have to have the left ovary removed. I will be put on hormone replacement that I was never put on before, and now I was told that I have endometrosis back again as well. Bottom line - learn from me, I was put through HELL from a doctor that I thought knew what he was doing, and I was in his best interest. Now longing for another child. I can't because the doctor made that decision, for not only me but my husband, with the big doctor words and the reassuring that this is the only way. Well he is WRONG, WRONG, WRONG. Do your homework, get second opinions and talk to other women in your state and out of your state for guidance. I sure wish I had the internet to learn what I know now has almost killed my spirit as a woman !! THANKS FOR LISTING. RENEE FROM CINCINNATI OHIO Name: Kayla Location: US Date: Feb 2005 Email: kaylasar@yahoo.com Looking for advice about Lupron I am 22 years old and was diagnosed with endo a in June 2004. My life has been totally turned upside down from not only the pain of endo but also the emotional side effects as well. I started my cycle when I was 12 yrs old and it has never been normal for me. It started out only getting my period two or three times a year for over six years. I knew this wasn't normal but no one would listen to me. I would get horrible lower back pain but never any abdominal pain (this comes later). I was in a steady relationship for 3 years and never used protection ( immature, I know) but I never got pregnant and deep down I knew something was wrong. I went to over five different doctors and not one of them would listen to me. I started getting dark hair on my stomach, craving food all the time, depression and mood swings, as well as weight gain and hypoglycemia. I finally started getting really bad cramps on the few times a year that I would actually get my period. I would be out of work for at least three days and was stuck in bed with a heating pad doubled over with extreme pain and no relief. As time went on I started experiencing shooting pains that felt like a knife stabbing though my sides almost on a daily basis. It finally came down to my husband rushing me to the hospital with extreme shooting pains in my right side. I was hooked up to an iv and they were pumping pain killers into me every few hours. I told the ER dr my history and that this was something I had been experiencing for years and that I tried several dr.s and no one would listen to me. Finally and ultrasound (which showed my ovaries to look like swiss cheese due to being covered with cysts) and blood work diagnosed me with Polycystic Ovarian Syndrome. This is a fertility disease of which there is no cure. I had all the signs all along!! I finally started seeing a specialist and was started on birth control to get my periods regular. I was told I would have an extremely hard time getting pregnant and would need fertility treatments. They also said if I did succeed in getting pregnant I would have a difficult time making it through the pregnancy and would be high risk. Things only got worse from here, I was extremely depressed because I have always wanted my own children. I became obsessed about getting pregnant and was let down every time I took a test and it came back negative. I felt so alone, no one could relate to me and still can't for that matter. The birth control was doing its job and giving me my period every month except my pain started getting worse every month and all month. I started having to urinate all the time and my bowel movements were becoming painful; to make matters worse is painful during intercourse. Finally I stood my ground and got a new Dr because I knew I shouldn't be in this much pain with the PCOS. I went to a male Dr. and he listened to me and sympathized with me more that the female Dr's I had. He suspected Endo and performed a Lap. To no surprise it showed that my bladder was covered with endo as well as my bowel and uterus. He was able to remove a lot of it because it was next to too many blood vessels. Finding this out only led to more depression because I had yet another infertility condition. Only a month after the lap i stopped my birth control and tried getting pregnant. To everyone’s surprise I found out I was seven weeks pregnant when I went to the hospital for dehydration. I was so happy I can't even begin to try to put it in words. But there was a nagging feeling that something was wrong the next day when I started getting this nagging pain in my left side. I was so scared, I ended up having a miscarriage four days later and getting a d&c. I'm running out of room so I will finish this up. The pain was only getting worse to the point where I was rushed to the hospital from work because I passed out from the pain of my last period. That was 4 months ago now. My dr. put me in medicated menopause with lupron ever since then. I have three more months left to go and I hate the side effects. The hot flashes, night sweats, depression and I have no energy. All I can think about is having a baby, I was due in April if I wouldn't have lost the baby and as the date fast approaches I think about it even more. I hate going through this and I hope the lupron helps, because I am considering a hysto, the only thing stopping me is wanting to have a child of my own and to experience pregnancy. If anyone that reads this has had lupron, I would love to know how it worked for you. Thanks Name: Bryan Location: US Date: March 2005 Email: bstx2005@aol.com A husband looking for advice after Lupron ….. MY WIFE AND I HAVE BEEN MARRIED 3 YEARS.SHE IS 24 AND WE FOUND OUT SHE HAD ENDOMETRIOSIS ABOUT 6 MONTHS AGO.THE DOCTOR CLAIMED IT WAS ONE OF THE WORST CASES HE HAD SEEN IN SOMEONE THAT AGE AND DECIDED TO PUT HER ON A 7 MONTH DOSE OF LUPRON.WE HAD A HAPPYY MARRIAGE AND WANTED CHILDREN BADLY,SO WE TRUSTED THE DOCTORS ADVICE AND SHE STARTED THE LUPRON INJECTIONS.THE FIRST SHOT WAS FOR ONE MONTH,THEN TWO 3 MONTH SHOTS.THATS WHEN EVERYTHING CHANGED,IT SEEMED LIKE OVERNITE SHE WENT FROM LOVEING ME TO HATEING ME.SHE BECAME A COMPLETELY DIFFERENT PERSON AND LEFT ME RIGHT AFTTER HER FIRST 3 MONTH SHOT,HER FAMILY DONT UNDERSTAND HER BEHAVIOR ANYMORE THAN I DO.I INFORMED HER DOCTOR OF WHAT WAS GOING ON,BUT THAT DID NO GOOD.HE WENT AHEAD AND JUST NOW GAVE HER THE SECOND 3 MONTH DOSE OF LUPRON.THE ONLY WAY I HEAR WHAT IS GOING ON WITH HER IS THROUGH MUTUAL FRIENDS,BECAUSE SHE WONT TALK TO ME AND IS NOW IN THE PROCESS OF DIVORCEING ME.IM SO CONFUSSED,WE WERE SO HAPPY BEFORE THE LUPRON.I DONT KNOW IF THIS IS THE HORMONES OR IF THIS IS REALLY WHAT SHE WANTS. IF ANYONE HAS A SIMULAR STORY OR ADVICE PLEASE EMAIL ME. Name: Corrinne Location: US Date: Feb 2005 e mail: Chasca456@yahoo.com I was reading over some of the stories that women have posted on here about endo, and I decided to post a question in regards to this foul condition: I haven't had symptoms for very long, but they seem to slightly match those of the women in the stories. I haven't had my period (due to years of Depo Provera birth control) for over 2 and a half years, but have gotten severe cramping over the past month. Also included with the symptoms are nausea, lower back pain, and constipation. It's hard to know if I even do have the ailment, considering my gynecologist hasn't pin-pointed anything down yet, except merely suggesting it as a cause. Is there any other way to find out if I have this disease, besides surgery? Thanks a lot- Name: Sofia Larson Location: US Date: Feb 2005 e mail: fia420vic@aol.com WHERE TO BEGIN...3 YEARS AGO I WAS DIAGNOSED WITH ENDO. I HAD ALWAYS BEEN IN PAIN EVER SINCE I STARTED MY PERIOD BACK WHEN I WAS 11 YRS OLD BUT ALL THE DOCTORS I SEEN SAID I WAS JUST A VICTIM OF REALLY BAD CRAMPS. THEY NEVER COULD FIGURE OUT WHAT I REALLY DID HAVE. A FEW YEARS LATER I WAS MIS-DIAGNOSED WITH P.I.D. (PELVIC INFLAMMATORY DISEASE) AND THEN FINALLY FOUND OUT A YEAR LATER THAT I IN FACT HAD ENDO. I BELIEVE THE ONLY REASON I FOUND OUT I HAD ENDO WAS BECAUSE THE DOCTOR THAT EXAMINED ME LAST HAD IT TOO AND SHE KNEW ALL THE SYMPTOMS WHERE THERE. SHE IMMEDIATELY SCHEDULED ME IN FOR SURGERY BECAUSE MY ULTRASOUND LOOKED REALLY BAD AND SHE DISCOVERED CYSTS ON MY OVARIES. ONE OF THE CYSTS ENDED UP WEIGHING 4 1/2 WHOLE POUNDS, CAN YOU BELIEVE IT? SO I WENT IN TO SURGERY AND HAD TO STAY IN THE HOSPITAL FOR 1 WEEK, THEN I WENT HOME. I WAS SHOCKED TO GET A BILL IN THE MAIL SHORTLY AFTER FOR $25,000 SINCE I HAD NO INSURANCE. SO THAT CAUSED EVEN MORE STRESS. ANYWAYS, I CONTINUED MY DOCTOR VISITS AND THEY DIDNT PUT ME ON ANYTHING TO HELP STOP THE ENDO...IN FACT EXACTLY 1 YEAR LATER I FOUND MYSELF BACK IN ANOTHER SURGERY AND THIS TIME IT WAS AN EVEN MORE COMPLICATED SURGERY. AFTER THIS SURGERY I BEGAN TAKING THE LUPRON SHOTS. BOY DID I HATE THOSE. IT WAS SO EMBARASSING BREAKING OUT IN A SWEAT AND GETTING HOT FLASHES EVERY 20 MINUTES AT THE AGE OF 19. BUT I HAD TO DO WHAT I HAD TO DO. ITS NOW 2 YEARS LATER AND MY DOCTOR HAS ME ON BIRTH CONTROL PILLS TO HELP STOP THE ENDO FROM GROWING BUT I'M SCARED NOW BECAUSE I READ ANOTHER WOMANS STORY ON THIS WEBSITE AND SHE SAID HER DOCTOR TOLD HER THAT SINCE BIRTH CONTROL PILLS HAVE ESTROGEN THAT ESTROGEN CAUSES ENDO TO GROW. I CANT WAIT TO TELL THIS TO MY DOCTOR. IM NOW 22 YEARS OLD AND AM EXTREMELY CONCERNED ABOUT BEING ABLE TO GIVE BIRTH TO A CHILD. I KNOW IM STILL YOUNG BUT I HAVE TO THINK A STEP AHEAD SINCE NO ONE ELSE WILL DO IT FOR ME. ITS SO SAD TO KNOW THAT ALL THESE WOMAN STRUGGLE WITH ENDO. WHERE DID THIS EVEN COME FROM? HOW DID I GET IT? HOW DO I CURE IT? I JUST CANT FIGURE IT OUT! I DONT EVEN FEEL LIKE A NORMAL WOMAN ANYMORE...ITS VERY DEPRESSING BECAUSE IM SO YOUNG AND HAVE SO MANY MIXED EMOTIONS ALL THE TIME I FEEL LIKE IM GOING CRAZY. I NEED TO START GOING BACK TO CHURCH AND TRUST THAT GOD HAS ME UNDER HIS WING AND WHATEVER IS GODS WILL WILL HAPPEN. IM GLAD I FOUND THIS WEBSITE SO I CAN RELATE TO ALL OF YOU WOMAN ALL OVER THE WORLD. BUT FOR EVERYONE, KEEP YOUR HEAD UP LIKE IM TRYING TO - AND PLEASE EMAIL ME IF YOU NEED TO TALK OR IF YOU CAN GIVE ME ANY ADVISE ON ANYTHING. THANK YOU FOR READING MY STORY. GOD BLESS. Name: Tobi Leiviska Location: US Date: Feb 2005 I cant believe that there are so many of us (endo Women) out there. For so long I though I was all alone. I had a complete hysterectomy at age 27. I already had 3 children. So, the fact of having it done, was so exciting esp because I believed that would end all my pain.. Boy, was I mistaking. That was only the beginning. A year later the pain was back. (I did still have my ovaries. My Dr. said they were perfect). I had a lapo done, and I was full of adhesions. He cleaned me out and I was Okay. Well, for about 6mths. Then it all started again. The pain!!!!! Everyone thought It was all in my head.(Including my Dr.) So #3 surgery, I was once again full of endo and cysts on my ovaris, and adhesions. I felt great. Well for about 3 months. Then the pain came on so strong, every day it got worse and worse. I was on prescription pain meds. It was the only way to make it through the day. I have 3 young children. I have to get out of bed and take care of them. #4 surgery came in July. He took out my ovaries and lasered the endo. Well, needless to say the pain never left. Actually, it was worse after my surgery. I tried to talk to my Dr. But, He released me of his care and referred me to Pain Management. He said that there was nothing left in me for him to take out or treat. So, here I am scared, in extreme pain, and now my Dr. releases me. I found another ob/gyn and he tried to tell me I was having a flare up. I said he was crazy. He wanted to treat me for IBS. I had a barium enema done. Low and behold the results came back Negative. I told him !! But they never listen to us. They think its all in our heads. I found another Dr. who really seemed to care. So in Nov I had surgerey#5. there was a piece of my ovary left in me, which was covered in cysts. Go figure. I was full of endo. Go figure! Anyway, I felt great for about 3 weeks. And ever since I haven’t gone a day pain free. My Dr. (of course) want to treat me for IBS. I said no way. I have come off my hormones. Since estrogen feeds endo I’m staying away from them. I started taking Pro-gesterone cream. It helps with the hot flashes and mood swings. But I haven’t noticed anything else. I cant eat. I feel like I could sleep 20 hours a day and still be tired. I catch every cold that goes around, my immune system is down. I take multi-vit, multi-minerals, vit c, d, e, b, iron, and calcium every day. I quit all sweets, caffeine. I buy my meat without hormones. I eat only raw fruit and veggies. I drink only water. I sleep every night with my heating-pad. I have tremendous faith in God. I wouldn’t have made it this far without him. My husband is awesome. He's been my strength. He has missed so much work. Is there anyone out there that has a complete hysterectomy, and still suffers like this? What do we do? Thank-you to all who have shared your life, I don’t feel alone anymore. We all suffer. We have to get through this, and stop letting this ruin our lives..... Please email Tobi if you can provide any support at: e-mail: tobi768@hotmail.com Name: Nancy Ann Location: US Date: Feb 2005 Hi, I was 29 when I started to have these awful periods. I would cramp and bleed very bad, of course as a teen I had very painful periods as well. I had two children and both by c-section. After my second child was born I had my tubs burnt and tied. BIG mistake! I wouldn't have done it at all, but I didn't want another child at the time. I was 25, and two was all I wanted. When I was 29 like I said things changed, very bad periods, cramps, PMS, heavy bleeding. I went to get my yearly check up and I knew he would find something wrong with me. I got the phone call, he wanted me in his office for biopsies. He said I had a pap to come back and it didn't look good. So off I went through a very painful day at the doctors office. I had pre cancer cells, I was scared and knew that wasn't all that was there. Endo can't be found unless you find it inside your body. An x-ray won't find it. Well after finding the pre-cancer cells and I had a family history of cancer I didn't want to take the chance of it spreading. I was going into cancer, at 29 just like my Aunt did. So I had a Hysterectomy, they removed everything but one ovary. My doctor told me after the surgery that I had Endometriosis, and it had been there ever since my son was born. I had it for 5 1/2 years. The endo had spread all over my pelvis, it was like gum they said. It was all over my bladder, bowel, ovaries, tubes, you name it, it was on it. They burned it all off of everything. After all that I was fine for a while. Years went by, I had a cyst come up on my ovary that was left. It was big, and needed to come out. It was causing too much pain. So I went in and they cut me again where I had my c-section. The Doc told me that my endo had come back and they had to burn it away again. Years have passed now, I am 42. (I have had eleven surgeries through my life time.) I am still scared of it returning, because I have been having some pain in my pelvis like before. I suffer from Chronic Fatigue, and Fibromyalgia. I have been sick for years now. I have lost over 66 pounds because of all the sickness. I can't gain weight if I do I lose it in 3 days. I am very tried a lot, and I have ran a low grade fever for 2 years now. I am on hormone replacement Celestin, I am also going to a pain management doctor, and I take muscle relaxers and pain pills everyday just so i can get out of bed. If I am not too tried I get out of bed, my body aches all the time. I use to feel great I was wonder mom for years. I don't know what happened I have been through every test known to man and nothing. I see a shrink, I am on Xanax for the stress of just everyday living. I am blessed though I have a supportive hubby, he loves me a lot. He is always there for me when I feel my worse. If anyone reads this and knows what I am going through please e-mail me I would love to talk with you. Nancy Ann You can e-mail Nancy Ann at: e-mail: ky_woman93@yahoo.com Name: Lyn Willis Location: US Date: Dec 2004 email: Dazzled500@hotmail.com Okay, No painful periods, no abnormal periods, no cramping etc..... I have one child and have tried 5 yrs. for a second, and have been unsuccessful. 2 fertility specialist, just from a vaginal exam, say 99% Endometriosis, 1% chance of getting pregnant. What? no pain, no suffereing, nothing, and from reading the stories today, and seeing how many women suffer from Endo, I have not experienced any where close do what these women have experienced. The doctor said I have a tilted uterus, well after some research, many women have a tilted uterus, and has been said not to be a concern. Can this be true? Can I possbile have endometriosis? Lynn Name: Elle Wilson Location: Australia Date: Dec 2004 e-mail: ellebaby006@hotmail.com December 2004. I got my period when I was 14 and well the pain just started from then on. I have been to many doctors over the years and quite simply told that I was a woman and needed to just get over it. My friends never understood what I was going through and I was pretty much called a hypochondriac I am now 24 and was diagnosed with endometriosis in June of this year. I had my daughter in April 2002, the pregnancy was hell for me, my mum had always told me that being pregnant was wonderful and that by enjoying it it would help me bond with my baby, but to be honest I just wanted her out. I could not stand up straight and constantly had pains. I have been told I have a miracle baby and that my endo is so bad that I never should have fallen pregnant. Sex after the birth (of course we waited) was dreadful, I would often just grin and bare it for the sake of my partner. I remember waking up one day with pains that I was convinced were appendicitis, my partner just thought that I was overreacting. I drove myself to the doctors and was immediately told that i had a pelvic infection. I took the antibiotics for a few days but I was feeling worse, I went back to the doctor who just prescribed me with different medication. I had been to the hospital twice during my course of medication and sent home with pain killers. I remembered my sister telling me that her friend had endo and decided to ring her to find out the name of the doctor who had helped her. The doctor was amazingly sensitive to my feelings and I found myself sitting in his office for over an hour while he made an emergency appointment for me to see a specialist (he thought I had an ectopic pregnancy), but he had not ruled out endo. I went to my specialist and after having an ultrasound was told that my uterus was retroverted and would need surgery to be fixed. The specialist told me that he was also going to do a laparoscopy to rule out endo. I woke from my operation in immediate pain, I was given pain killers and told that they could not give me much more until I had seen my specialist and he could explain what was found. I had 5 procedures done on me during my laparoscopy, and yes, endo was found. I was told that it had been 'burnt' off and that I would feel much better after I had recovered. It took me 12 weeks to recover and it has been 5 months since my op but guess what ladies???? it's back and today I find myself surfing the net looking for answers on how to deal with this. I have read all your stories and they scare me but it also helps me realise that I'm not suffering alone and that mine could be a lot worse. I am so sorry for what many of you have gone through and I pray that one day soon someone will miraculously discover a cure for all of us. I just hope that this time I can be strong enough not to let it ruin my life and my relationship. My only advice is to hold your loved ones close and explain things to them because I'm sure that if your moods are anything like mine, they are suffering too!!! Stay strong and healthy, Elle Name: Leigh LeRiche Location: France Date: Oct 2004 email: lleriche@mdsonline.co.za Hi there, I'm actually from South Africa not France as indicated, there was no option for me. I discovered i had endo about 5 years ago - it was really bad then. Was having an operation every 3 months. The doctors could not find my ovaries most times, they had to lift my uterus as the endo had gone behind and under it. My last operation was the 22nd August 2003 - and I've been clean since then. My husband and I are trying to have a baby for the last 6 years, so this has been a huge obstacle for us both. My ovaries are badly scarred due to the endo, and I was given a 1% chance of having kids ever. I'm currently on my 9th gynae in the last 5 years, as not many doctors are familiar with the endo, the causes and the treatments. I was totally beside myself when I was diagnosed 5 years ago, to know you have a disease is a frightning thing. Then I did research, and lots of it. I have a lever arch file at home just on endo, mostly from Carolyn Levett on how to manage, cope, and conquer this disease. I also went to the library, and gathered a lot of info there also. Some scary things came about, and I thought there and then, do I take all this in and use it constructively, or do I just sit back and allow this disease to run all over my body, and shut me down! Absolutely not !! As mentioned previously, I've been clear since August last year - that is a whole year (and two months) without an operation! My secret: eating correctly, exercising in moderation, changing my lifestyle, and in a good way. I've not as yet bought any of Carolyn's books, but I certainly do plan too. My husband and myself went to see a fertility doctor, and we / I had the insemination done last week Wednesday - I now have to wait for two weeks to do a scan to see if it has taken or not. I went on fertility tablets, to create not only one ovary, but two on the left hand side, and two on the right hand side - hopefully it would of taken at least with one. They actually insert the "goods" (hubby's goods) straight into the uterus at ovulation time...I will definitely let you know if it has worked or not. But if not, there are other options, IVF (In-Vitro Fertilization) when they take the ovary out and then fertilize and place back to develop! There are ways, so if you are trying to have kids, DONT GIVE UP - I'm certainly not going to. I was told 4 years ago, my endo is so bad, my ovaries are so damaged, if I don’t have kids in the next 6 months I will never have! that has not stopped me! and won’t either...there is always adoption? I would love to hear of your story, and how you have managed / coped with endo? I love advice, and to hear of things that are working for others - maybe it could work for me too. All I can say is: "Carolyn Levett - THANK YOU for all your inspiration and courage you have given me to get through these difficult times I have experienced" Best Regards Leigh Le Riche Name: Tanja Country: Canada Date: Oct 2004 email tangermany@hotmail.com Hi, my name is Tanja, I am 24 yrs. old and I was diagnosed with endo 2 years ago...as a teenager I always had bad periods, with vomiting, and severe pain, but my doctor never took it seriously. About three years ago I had my first visit to the ER with what they thought to be a ruptured appendix, which of course it was not. My pain was so bad that I had to be in the ER several times a week, for pain management and every time I went it was the same old spiel, I'm either pregnant or it is my appendix, finally after months of ER trips my doctor sent me to a specialist, I had a laporoscopy, where they right away lasered it away and did a DnC. I was informed of what I had and told not to worry, it is common, and the surgery should relieve it, yeah right. It was a month later that I started getting more pains than ever. That's when the different medications started, from birth control, to cyclomen to Lupron, they tried it all, then I did a special diet, very similar to the one described here, but everything just seems to work for 2-3 months. (The diet worked for 6 months). The worst was Lupron, the side effects made my life hell and I got no pain management what so ever. For me the worst feeling is that most people don't know or don't understand. I missed so much school, and my profs always thought I was making excuses, "what kind of a pain just suddenly stricks so bad you can't come to class !". My daily life is interrupted so much, I cannot wear heels because it hurts, I cannot stand for too long because it hurts, I cannot do sports because I start bleeding right away. I missed school regularly and I miss work, what I wear how I sit it all affects my endo, and it really sucks. My pains are unpredictable. I have gotten used to living with discomfort and pain on a daily basis, but it is the pain episodes, where I cannot move, see straight or think that kill me. I had to leave work two days a go because I passed out from the pain, my co-workers think it was because I had to much fun at a party....I wish. I feel bad for my husband, he had to endure so much, the side effects form medications, the unexpected calls to pick me up and take me to the ER, the fact that sex has to be scheduled and carefully planned out... We want to have children, but were hoping to wait, since we both just finished university, but I am scared that if I wait too long it will be too late for me. My doctor does not believe in doing too many laporoscapies, he says they do more damage than good, I wanna agree with him, but at the same time I want to know what is going on inside of me... so now he says I have a three options left, have babies, a hysterectomy (can't spell sorry) or deal with the pain....well, here I am dealing with it. I decided in July not to take another Lupron shot and not to go on birth-control, well it lasted...for awhile at least. I managed to only get pain during my pain and so it only incapacitated me for 2-3 days at a time, but of course for the last 2 weeks it has been back to normal, normal being pain all day everyday, with my 3 day episode in full bloom as I am typing this. I don't know if reading these stories helped me or scared me more, it just comforts me to know that there are others who know what it is like, and who like me go on every day. I wish there were definite answers, yes, I will get passed this, yes, there is a cure and yes, you can have children....anyway, thank you for your stories. Name: Margaret Moran Location: US Date: Sept 2004 email: margarita7978@aol.com My name is Margaret, I am 25 and have been dealing with this illness for almost 7yrs and female problems for 14yrs. It all started with my first period at the age of 11. I was always sick and my periods were never on time or I wouldn't get them at all. Well, the doctors just told me I was young and very athletic and it was all completely normal. By the time I was 15 it really started getting out of hand because all the other girls were having normal periods and never experienced the pain that I quite did. So, I went to the doctors again and they had me see a nurse practitioner because my problems weren't serious enough to see the actual doctor. Well, thank God they did because she told me straight up, "you are either pregnant or you have an ovarian cyst". Well, I wasn't pregnant so I had my first ultrasound and papsmear done at the ripe old age of 15. I was also put on birth control to get rid of the cysts, which didn't help at all. I was loosing my friends and hurting at school because I was always sick and had a boyfriend that was getting real tired of hearing me say, "I'm so sick". Well, I continued life the best I knew how and was in the doctors about once a week, having ultrasounds done about once a month, and changing birth control pills about every few months. By the time I was 17, my doctor discovered two abnormal cysts and told me we need to do a lap. When the lap was done he told my parents that they got them and also a tumor which was benign. I had 2 long weeks of recovering from my lap. I also should add that my maternal grandmother died of ovarian cancer and this was on my mind the whole time. Of course, my depression went into a downward spiral and things were only going to get worse. I also started to develop anxiety. Well, shortly after the surgery I was back to the doctors and ultrasounds. My senior yr I was unable to swim or cheer because my grade pt average was .1 below do to having surgery and being ill and life wasn't improving much, except for meeting a great guy. Now, I am 19 and still dating this great guy(Robert) and looking at getting married soon. He was in AIT in the Army and I was working at a horrible job and put college on hold. I went to the doctor and told him something is wrong and I know it and he (not to happily) said, well we can do another lap and see if anything is going on. So, I agreed to having it done and at the post-op he told me that he was surprised to find endometriosis and it was severe. He also said, "I got what I could, but I couldn't get everything". Endometrio-whatsit, I had never heard of such a thing. Then he continued to tell me that if I want children that I have to start now because everyday that goes by is less of chance to have children. Well, Robert and I agreed on a date to get married which was about 3mths away so I luckily had a quick recovery and had my mind in other places. So, on 9-25-99 I was married and we had about a week together before he had to leave for Virginia and on to Arizona. I became very crazy/scared and would tell him we have to get pregnant now and he would tell me to calm down and realize that he isn't even their to get me pregnant. Time went on and I was still sick all the time and after 4mths of living apart we finally got to be together and he for the first time got to see the real me, the endo me. I get the worst nausea to the point of passing out on the bathroom floor. When he first saw me in this state he freaked out and didn't know what to do and now he knows to just leave me alone. In about spring of '99 I started bleeding rectally and it totally scared me, I made Robert take me to the ER because I thought I was dying. My mom and I decided that I need to go to a new doctor so I drove to Fla and went to this one who went to our church, he wasn't all that great, but found a new cyst and suggested I go to a specialist in Winter Park,Fl. I went and he seemed real nice and I felt like maybe I am finally going to get some help. He told me he wanted to try me on Lupron and said their were some side-effects, but nothing horrible. I made it 3mths out of 6 on the Lupron. I gained 40pds, I was having horrible hot flashes (to the point Robert would cover me in wash clothes while I was sleeping to cool me off), migraines, major mood-swings and worst of all it never stopped my periods so I was still dealing with the PMS, bleeding, and of course nausea. I tried calling him and he would never talk to me so I decided I would make another appt, which meant I had to drive from Ga to Fl for this. I went in with my mom and I started to cry and I said, "all I wanted was help", he then tossed a box of Kleenex at me and told me to get out of his office he wasn't going to deal with me anymore (just fine w/ me). In 2002, I had a colonoscopy for the rectal bleeding and the doctor said, I would have to do it over and closer to my period because he believes I have endo their, but he can't see it because its not inflared. I then had my 3rd lap, by a military doc and I woke up in the recovery room in so much pain(screaming bloody murder). He didn't spot the endo that time, but believed it was in areas he couldn't get to, but did however fix some areas of scar tissue attaching itself from organ to organ and also discovered I had a clogged right tube and didn't do anything about it. What was supposed to be a day surgery took 3 days for me to leave the hospital and 2wks to recover and I have never really recovered. Needless to say I wasn't going back for another colonoscopy. I started to get severe lower back pain about a yr ago and it gets to the point I can't walk/ bend over and I am still dealing with daily nausea, hot flashes, sharp pains on the right side and just trying to get through one day at a time. So, we have moved 4x in 5yrs and are about to be on our 5th move and I have seen at least 3-4 different doctors at every destination and this is what I learned, I know as much as any doctor. Today, I am 4 days on the Progesta-care and going to try out the diet, otherwise looking at hyst and adoption. I owe many thanks to a wonderful husband, a comforting mother, two dogs that are always at my side whether I am in bed sick or up feeling good, and most importantly God who has given me hope that one day I will feel 100% and show me that their are people who have it a lot worse. God bless all that are dealing with this, may you know you aren't alone. Name: Morgan Bozzo Location: US Email: tammyjohnson6897@yahoo.com Date: August 2004 I am 24 years old, I was diagnosed with endo barely one year ago. It first started with painful intercourse. I had my last child in august of 2003 and I had a tubal ligation after that is when my symptoms started. After my six week recovery I was looking forward to not bleeding anymore, well that never happened! My dr. put me on birth-control to stop my bleeding. the first one didn’t work so he put me on another, that worked for a couple weeks then the bleeding started again. He then decided with Lupron, that worked for a few weeks then the bleeding started again. I then had a laproscopy and he put me on ortrha evra patches to stop the bleeding. that worked for 2 weeks and here I am bleeding again. I have been married for two years and my marriage is already in major trouble because I cannot be intimate. I feel like my world is falling apart because of this. I feel my only option is to have a complete hysterectomy. I am only 24! I estimate that there has been a total of 3 months out of 13 that i haven’t bled. I suffer daily with pain and bleeding and it seems to be hopeless. I am grateful that I have my children cause I know that my only other option is a hysterectomy. Endo has literally destroyed my life! Name: Theresa Location: US email: kjuntaz@yahoo.com Date: July 2004 I am new to the endo scene - only having been diagnosed since January 2004. I am 35 now and I was married for the second time in September 2001 and my husband and I decided to wait a couple of months before trying to conceive. We tried unsuccessfully for about 8 months and then I went in to see an obgyn, who had me chart my temps. I did this for about 2 months with no success and then we talked about doing a laparascopy on me in Dec. 2002. The laparascopy proved to be of some use in that it showed the dr. that I had a uterine fibroid that had my cervix closed shut. He dialated me open and said that he saw very minimal endo but nothing to be concerned about. After 2 post-coital tests and an HSG test, nearly 6 months later, nothing was happening. I complained to the dr. that I was starting to feel things - like painful lower abdominal pain and then pain bowel movements where I would nearly be throwing up. I told him before my initial surgery of my family's history with this disease. When I approached him 6 months post-op, I was basically dismissed as a nut-job so I went in search of another obgyn who would talk to me about my situation instead of shuffling me off down the road. My new obgyn ordered the post-op report from my other dr. and said that the "very minimal endo" was of concern to him. He monitored me for a few months and put me on serophene, but still nothing was happening. He decided he wanted to do a 2nd laparascopy on me in January 2004 and discovered that I had Stage 2 endo, bordering on Stage 3. The surgery showed that my right ovary was nearly consumed with "chocolate" endometriosis and was pulled by the scar tissue behind my uterus. He lasered the endo out and saved my right ovary. My left ovary showed some signs of endo but he cleaned it out too. He cleaned out everything, even my tubes and I went home that evening. My recovery was slower than my first lap. I went in for my one week post-op follow-up and he showed me the pictures and I sat there crying my eyes out 'cus it just looked so horrendous. We decided to put me on zoladex for 3 months to suppress my cycles and put me into a menopausal state to suppress the microscopic endo that he couldn't get out. It took 13 weeks for my period to come down after the last zoladex injection. My period wasn't as bad as the others had been before surgery. He put me on serophene again. I believe the drug is messing my cycles up. This past Sunday, I started spotting as tho my period was gonna show and I had spotting for 3 days since and now nothing today. I read that taking evening primrose oil is good for pms so I started taking it on Sunday so I don't know if that had anything to do with my spotting, tho it shouldn't have. The endo ride has been a very emotional one and I'm trying to take things as they come. I can relate to you all out there with the frustrations of ill-mannered doctors and their misdiagnoses. We just have to remember to be good to ourselves and take one day at a time. Thank you for letting me share my story with you all. Name: Beatrice Location: US Email: waves2180@aol.com Date: July 2004 Hi. my name is Beatrice and I just wanted to share my story with everyone. I am eighteen years old and just had laparoscopic surgery to diagnose endometriosis. The doctor performed the surgery and he found nothing. This has left me feeling very frustrated because I know my symptoms are real and that there really is a problem. I read somewhere that sometimes endometriosis does not always show up during the surgery. Is this true? I am very frustrated because I would really like to know what is going on here. If anyone has any help or suggestions please write to my email address. I would really appreciate it. Thank you. Name: Andrea Location: US Email: briggs0286@aol.com Date: July 2004 Hi, my name is Andrea. I am 18 years old and I have been having pelvic pain for about two years now. When I realized that the pain wasn't considered "normal", I decided to go to the gynecologist. The doctor gave me a pelvic exam and then ordered me to have an ultrasound. The ultra sound came back as normal, and months had gone by, and by this point I was very frustrated with myself and the doctor, knowing that something was wrong but we just didnt know what. After this, the doctor put me on birth control pills. For the week I took them, I had a horrible reaction to them. I broke out in a rash on my face and could not sleep at all for the week I took them. I had been keeping track of the pain for a while on a calendar and the doctor wanted to see it, when he looked at it he told me the pain was probably just due to ovulation. I knew it wasn't though. Before that, I had read something in a magazine that described my pain fully. It was Endometriosis, which is very prevalent in my family. After this, I told myself that I did not want to go back to a doctor's office no matter what because I did not want to listen to another doctor that would not listen to me about my pain and symptoms. Fast forward.... The pain soon became worse with each passing month. Each month the pain would last longer as was more frequent. I decided to see the gynecologist again, stating that I did not want to have another internal exam, and that I just wanted to talk about the pain and maybe go on the pill again. At the appointment, I talked with the doctor about my symptoms, so he told me that they would do another ultra sound, I didnt see the point because the last one had shown nothing out of the ordinary. He said that if this came back regular that they would schedule me for a laparoscopy. I am scheduled to have this surgery July 19, which is coming up pretty quick. I am scared because I have never been in the hospital before for surgery, I am also scared at what they might find. I need to talk to someone who has been in my shoes before. I also have a question. Whenever my pelvic pain starts to hurt, the pain goes all the way down my leg, to my knees and feet. Is this normal? If anyone has experienced this before please contact me and let me know. Thanks in advance! Andrea Name: Latoya Location: Jamaica Email: hotness01@hotmail.com Date: July 2004 I was trying to get pregnant for two years with no success. I went to the doctor who sent me to do some test. T he test claimed I had a blocked left tube. Surgery was planed. After the surgery my doctor informed me it was actually endometriosis. I had no idea what this was. Thank god for the web . I was put on lupron which cost me a fortune. I went through mood swings, depression even hair loss with this medication. I’m now separated from my husband and I do believe this was a factor as he did not understand my mood swings and depression so we constantly argued. Luckily I did have a son before but it hurts to know I cant get pregnant just like that. I’m trying again to get pregnant I just pray it will happen before the year ends I am pleading to god my son is eight he needs a sibling.
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