Endometriosis Stories - Page 31

Name: Michelle
Email: mrdepaolo@yahoo.com
Location: United States
Date: April 2010

I am very grateful for this website...it is a wealth of information and has helped put things in perspective for me. I was tentatively diagnosed with endometriosis in June of 2009. I always had long, irregular periods but my cramps seemed run-of-the-mill until my early 20s. I started to noticed extremely severe pains immediately at the onset of my period...I would be on the floor with sudden pain, go into the bathroom and find my period had started. I also began having severe migraines and dizziness, which I didn't think was related to my cramping, but later learned I am predisposed to migraines, but they are worsened by excess estrogen. I began to have constant dull aching in my lower abdomen and lower back. This was also coupled with frequent supposed UTIs. My doctor would treat me for the UTI, but the test would later come back negative. My urinary troubles became constant, until I was feeling the need to urinate more than twenty or thirty times in a day, with constant bladder discomfort and pain. The breaking point was a sudden onset of severe right-sided flank pain coupled with nausea and blood in my urine. This sent me to the ER, where they checked me for kidney stones (because I have a history of stones). Nothing was found except a cyst on my ovary, and I was told to follow up with my urologist. After a complete exam and a cystoscopy where my bladder and ureters were examined with a scope, my urologist said everything was fine and encouraged me to find a new gynaecologist to rule out a gynaecological problem. The two gynos I had already been to were either completely unhelpful or outright mean. One of them made me feel crazy, telling me my pain was normal and each symptom was insignificant...the urinary problem was that I ate too many acidic foods, and the lower back pain is just a muscular issue, and as for the cramps...I just needed to take several Advil and deal with it. So I returned to a gynaecologist I had visited as a teen, who I remembered had treated me very well. She was sceptical about my story at first, saying it didn't sound like classic endometriosis. Then she did an ultrasound. It showed a very large adenomyoma in the right front wall of my uterus, pressing against my bladder. She said she had never seen anything like it in all her years of practice. She said adenomyosis is uncommon in a 26-year-old who has never had children. She also said it is likely I have endometriosis, but there is no way to know how much or how little without a lap. I started continuous BCP back in June, and it seemed to help a lot until recently, when the stabbing pains returned, this time in my left side. The terrible nausea and cramping in my bladder has returned with a vengeance and I'm starting to think it's time for that lap. I just want to know for certain what is happening in there. I am so glad for the information here. Thank you to everyone who shared their story.


Name: Ricki Jackson
E mail: ricki_j62@hotmail.com
Location: United States
Date: April 2010

First, thank you all for sharing your stories. I found this site a few days ago and I feel like my life has been turned upside down from hearing about so many other women who suffer much like I do.....and Ladies..........IT IS NOT IN OUT HEADS!!!!!!!!I am 24 years old now, but EVRYTHING started when I was 12. I would also like to add that I have not been diagnosed with endo, yet......... It all started when I had my first period when I was twelve. I was in the middle of soccer practice and I got these cramps under my rib cage. I was unable to breathe.......they felt like pockets of air that were bursting and popping. Since I had always been so active and I never suffered at all when I ran, I couldn;t figure out what was going on. Well, right when I started my period, the pain on the right side of my stomach started. My mom and I connected the dots, so we thought, but by my 8th grade year, my docotor told me that I needed to simply take advil and that I would outgrow the pain. Halfway through my 8th grade year, I was rushed to the ER due to the amount of pain that I felt on the lower right side of my stomach. My doctor told me that I had chronic appendicitis. I had it removed that night and afterwords the doc. told me that they found a cup of fluid surrounding my appendix and they had no idea where it came from??? "WHAT".......at that time, I had no reason not to trust doctors, so it was not possible for them to not know where my pain was coming from. I was pain free for about a month, but I was unable to run track due to the pain under my ribs that still persisted. As I got older, my periods became more painful. The only thing that I found that helped was sleep, a huge zip lock bag filled with HOT water and three advil. Also, I started having a really difficult time going to the bathroom. I was more often than not constipated. All of this, for me, was more than difficult. I was never sick growing up, always healthy, and very athletic. I danced for 12 years as well as played soccer for 8. By then end of my senior year, I had developed food allergies (how crazy that the allergies that I developed ended up putting me on the endo diet!!!!!, even though I had no idea that there was such a thing, but I have been on the endo diet for years), I had a hard time staying active, because when I ran, my body always hurt, my knee, my back, something. I had more trouble than ever going to the bathroom, and my weight started to really fluctuate and I became hypoglycaemic. From my senior year till now, 6 years, my parents and I have been trying to figure out what is wrong with me. First, I had MRI's and xrays done on my back and my knees to see why I couldn't work out anymore. All three came back negative to anything impacting me. I saw three physical therapists who knew that my hips were always slipping out of place, but they did not know why. My fatigue and mood swings started to escalte and I could never seem to get enough sleep. My periods became more irregular and painful than previous years and I felt as if my life was spiraling out of control. My first years of college were a nightmare, where I isolated myself due to the pain and the fact that I did not know how to explain it. By my sophmore year of college, I was in a dark depression, my stomach was always sooo bloated that I developed an eating disorder, mostly due to the fact that many foods inflamed the pain in my stomach and prevented me from going to the bathroom. I stopped having my period for 8 months. After that year, my mom took me to more docotors. NAtural docs, a gyno doc who said he had no idea what was wrong, and an internest. I ended up having a colonoscopy, in which nothing but excessive amounts of fluid were found and they still had no idea where it had come from. I have had every test to rule out celiac disease, chrones diease, and others like it. I have had an ultrasound and a vaginal ultrasound and cists were found on my rt ovary. I was told that cists were really normal and to not worry about them; they weren’t causing any of the problems. I have tried acupuncture, deep tissue massage and rolfing (structural integration) in which I get laser work to get my nerves to calm down because I am in a constant state of pain. I saw a new gyno two years ago and he diagnosed me with Hyperthyroidism type 2. I was put on thyroid meds as well as numerous supplements and immune builders for my rapidly weakening immune system. He said that I may have endo, but my stomach was not flared up at that point, so the only way to see it is to do a lap, which he did not recommend, nor did he recommend birth control. The meds helped, but my doctor did not regulate them, so they only do so much. The supplements helped as well, but I grew sick of taking over 50 a day and started to see everything creeping back. I went a full year where I felt great. I thought that I had been cured; seriously was doing things and living my life to the fullest. This January, right after I got back from an amazing trip to Africa, all my pain and everything resurfaced. For the past three months, I have not been able to function as a normal human being. I am exhausted. When I ovulate, it feels as if my stomach is being stabbed with small knives. I get contraction like pains in the stomach. I have been bloated 24/7 and when I push on my stomach and my lower abdomen, it sounds like an ocean in there and it make me so nauseous. I get waves of nausea on a regular basis now. My immune system is shot...............I get sick close to 8 times a year and I am constantly losing my voice. I was just turned down by every Mayo clinic in the country ( In Florida, I was actually told that "they do not deal with chronic pain"). I had reached my end...........I haven't found a single docotor that cared or who could help me, I struggle to stay awake and function at work, and I get excited right when my period is done, because I know, that I will have a about 5 days where I feel good till the pain begins when I ovulate. I am in a serious relationship that is starting to suffer, and I know that my health affects my boyfriend and our relationship more than he is willing to admit. I reached my breaking point until I found this website. Reading all the stories and finally finding others who suffer like I do; well, as sad as it is to say, it's inspiring, because I felt so alone; I have for so many years. Reading all the symptoms that I suffer from finally being explained brings me to tears. I still have a log way to go to get a diagnosis and to start treatment, but all of this is a start for me. Thank you to all who shared with me and whoever is still suffering or who can relate to my story,please e-mail me. I would love to talk to others out there who may have advice or a happy ending!!!!!!!!!! God bless us all:)


Name: Ingrid Borg
E mail: danjake@maltanet.net
Location: Malta
Date: April 2010

I am now 36 years old. 5 years ago my second child was born by caesarean section and from there onwards i started suffering from Endometriosis. After the operation I could not recover completely from the pain and had my routine check up after the birth. I told the doctor that I feel a lump on the caesarean stitches and I was told that it is just a blood clot. Then still always in pain and my life started changing. After a year I went to another doctor and told me I have nothing maybe an inflammation and gave me drugs to cure it. The pain remained the same during menstrual periods much harder but maybe only a week every month not in pain. After 3 years in agony I went to another doctor. This time when he felt the lump on the stitches he told me that he was thinking I had endometriosis. Then he made me an appointment for surgery to remove the lump and after the lump was taken to laboratory. Yes it is endometriosis. I was told that during the caesarean operation a cell was trapped in the stitches and formed endo. Now after surgery I am taking the pill as still I am in pain. I've been taking the pill for 4 months and the pain is still there. Now I have to go to the gynae again because I was given another solution a course of 6 months injections. I take 2 boxes of painkillers each week trying to cope with the pain as my family needs me but the pain is getting me depressed and my life is changing. Hope I will find a remedy and hope nobody passes through what I passed for 5 years now. Ingrid


Name: Elizabeth Mylan
E mail: elizabethmylan@surfbvi.com
Location: British Virgin Islands
Dare: April 2010

My problem went undiagnose for over 5 years by doctors. I had a case of recurring urinary track infections, which was unexplained. It was my own pushing which lead me to a retired doctor who suggested that it might be endo. Finally another obgyn confirmed that it might be and referred me to another doctor who specialises in this type of surgery. My endo had invaded the left side of my outer uterus and a piece of my bowel was stuck to my uterus. Doctor removed as much as he can removed and now i have to take 3 lurin injections for the next 3 months and i should be fine. It has been a long, painful and costly journey to get where i am now and I look forward to feeling well again in the 4-6 weeks.


Name: Shana
E mail: shanadavidson22@yahoo.com
Location: United States
Date: April 2010

Pain...was my biggest issue. Every since I was young, let's say 13, I had horrible pain with periods. The pain was getting worse over time as well. Sometimes I ended up throwing up or getting sick because of my pain. So I thought it was normal. I ignored the pain hoping as I got older, it would get better. I was wrong. I started dating (my current boyfriend) by the age of 15 and things were going okay. We made love a lot..and it never really hurt until one day..the pain was so bad I started to cry. It didn't stop there, adding to the painful periods I also got urinary tract infections quiet often..like 50% of the time. Frustrated, I went to doctors and they would say, "you're young, nothing is wrong just a little pelvic infection." So I dealt with it, feeling alone and scared of not knowing what was wrong with me. That was probably the worst part, not knowing. So Life went on and I ended up moving to Texas with my boyfriend a few years later. Things were going good except we NEVER had sex..I mean never. We would try and the pain would be so intense I would have to stop. I finally couldn't put up with this anymore I went to a Women's Center (gyno.) and they did a number of test to determine what was wrong. I had a Colposcopy, and they found HPV. I was devastated, but it wasn't over yet. They continued with the testing and I received a Coposcopy. That was a very painful experience. The next step was a procedure to find out if it was Interstistial Cytisis(spelled wrong) and I passed the test, so that was ruled out. I felt alone, frustrated and at wits end. Finally my doctor decided I should get a Laparoscopy. Endometriosis was what they found. I am upset because there is no cure, but I'm so happy to know what is wrong. Funny how it took the doctors so long to know what it really was. I am now 18 living with HPV, Endometriosis and don't forget my other health issues. My story is not unusual but when I was young my parents doubted anything was really wrong. If you believe there is something wrong with you health wise, then take care of it, at least while your young. Endometriosis is a common problem in women (40%) but is also a serious issue. Take care of yourself and visit your Gynaecologist often. :) and life goes on.

Name: SMR
E Mail: smr_4994@hotmail.com
Location: United States
Date: April 2010

Hi. I am 16 years old, and I was just diagnosed with endometriosis two weeks ago. They found out that I had this by a laparoscopy. I have had horrible cramps and bleeding for the past six years. They couldn't ever figure out why, I have been on many birth control pills and this winter they decided to put me on the depo provera shot. That was the worst decision of my whole life, and I will NEVER take that again. It changed my whole personality for the three months. I had anxiety and depression which were horrible. The doctor that gave me that didn’t think that I had endometriosis. We were frustrated with her so we set out to find a different doctor that would help me get better. I met my doctor one day and without even looking at my stomach just by hearing all of my history, she told me I needed to get a laparoscopy because she was sure that i had endometriosis. Sure enough I had it. She came in after surgery and told me that she couldn’t get all of it out. It had glued my bowls together and there were two ways of getting rid of it. The first way was to go and cut it out which would mean another surgery or to take depo lupron. We then later figured out that the only way to get completely rid of it was to take the shot. I am scared of getting this shot because it will send my body into menopause. This whole experience of taking the depo provera shot made me have to go on homebound now that I have had the surgery I am still on homebound because I still have endometriosis in my stomach. I hope taking the depo lupron will help me get back to my normal life. I want to be able to hang out with friends and be a normal teenager I'm SICK of this. If anyone knows how to cope with all of this please contact me, i'm having a hard time and i'm just trying to be a normal teenager again.


Name: Anna Arope
E mail: ms_dilario@bigpond.com
Location: Australia
Date: May 2010

My endo story does not have a very happy beginning..but the ending is in the making... I'm 38 years old. When I was 16, I would collapse from the pain of endometriosis. Often, I would get pain throughout my cycle -mainly in the middle, during ovulation. On several occasions, I went to my doctor and, on one occasion when I passed out, to the hospital. Would you believe that all the doctors I saw thought I had bowel problems (constipation) or just simple 'period pain'? I can't tell you the number of times I was given enemas! It was until I was seen by one of the senior doctors at the hospital that it was suspected I had endo. He referred me to a gynaecologist. So I turned up for my gyno appointment. I was petrified as I was young and inexperienced. He read the referral, laughed at me and said that there was no way someone so young could have endometriosis. He sent me away. Twelve months later, after another particularly awful episode, I went back. He did a laparoscopy and discovered that not only did I have endo but I had a very serious case of it (no kidding!). I was put on Danazol, a hormonal drug, for six months, but apart from making me fat, it did not abate the endo's progress. So, at barely 18 years of age, I was booked in to have surgery. I was told that it was to remove the cysts, excess endo material, etc. It wasn't until three months after the operation when I went back to see the doctor that we even spoke about how the operation could affect my future fertility. He was very condescending and proceeded to tell me that I had an 'ovarectemy' and tried to intimidate me by speaking to me in medical terms. When I persisted in questioning him, it emerged that he had removed half of one ovary and a third of the other and that I would probably have difficulty conceiving later in life. I honestly felt violated. At no time before the operation had we discussed the removal of ovary tissue - or future fertility. After that, I went on a merry-go-round of drugs - Prima Lutin, Prima Lutin + Danazol, various Pills. Eventually, I ended up on Diane 35 that helped control my cycle. I never went back to see a gynaecologist - I felt too betrayed. At 35, my husband and I decided that we wanted children. Three years later, we're still trying. I've been off any medication for close to 6 years and my endo has returned with a vengeance. I now face the choice of either not having any children, or seeing a gyno and getting some help. I don't know what I'm going to do.


Name: Kalie
E mail: Dressage224@aol.com
Location: United States
Date: May 2010

I need some answers! Please! I'm going crazy because I have been sick for 7 months. I think I have endometriosis and my gi doctor told me to go to my gyno and get it checked out. I have an appointment scheduled but until then I am going crazy. I am 18 years old and I started my period when I was 11. Ever since I've started I've been on birth control because I would have my period almost everyday of the month. One day it would be just in the evening then other days all day and then other days I would think my cycle was srtaightening out because I would have a period free day. The birth control helped alot but I would still go for about a week to 9 days straight. That eventually worked itself out too now I go about 5 days. But I've always had horrible pains and everyone told me that was normal and that should fix itself later, well it didn't. I've used naproxin, I used to take 4 advil every four hours until it messed up my stomach and created erosions in my stomach, I usually miss some school, I dont want to move, and I usually get cramps a few days before, during, and a few days after my period. And I eat everything and crave everything, luckily I don't really gain any weight and work it off later. I've tried going off birth control once within those 7 years but immediately my cycle got messed up. I usually get a lot of clots too which I always thought was weird. Then this past year I've gotten extremely sick. In October I had the flu, and then through november and part of december I had pneumonia, and then in the middle of december I got mono, and then in feburary ended up in the hospital for 3 days because I was vomiting every 5 minutes for 8 hours and had blood in my stool, they performed an endoscopy and said I had erosions in my stomach probably from all the advil I took, now I can't take advil and tylenol doesn't fully help with cramps. I continuously got sick through march, had my tonsils out in april to help, started to get stomach pains in march, and only a few times in april and the pains were so bad I was sitting in class in tears, which is not me, I joined the army in June and will now probably be discharged because my pains leave me bent over and unable to move for a few hours, so my gi doctor did a colonoscopy. He said that there is an odd sharp turn in my colon and my colon doesn't connect straight up to my rectum like it should and he thinks it could be due to a possible adhesion of my intestines. He thinks I have ibs and gave me some meds for when I have the pains. Oddly enough I haven't had any pains yet, but I'm sure they will hit soon. And that was a week ago and 2 days after my colonoscopy just when I thought I knew what was wrong with me, I get another horrible upper respiratory infection. I'm going crazy, I want to know why my immune system is so shot, and if it is a possibility that I have endometriosis. I don't want it to be but by now I'm sick of being sick that I just want answers and I'm sick of my mom getting mad at me for being sick, I know she's just frustrated but I think I'm a little more frustrated than her. I'm always tired (I sleep whenever possible), when I get the pains I'm in tears, my periods have always been dreadful and extremely painful, I can't go off birth control, and I'm wondering is it ibs or is it endometriosis. I need answers. If anyone can help or if anyone has had a similar event please contact me. I'm going crazy and I'm afraid I will just run into another road of unanswered questions and more illnesses.


Name: Melissa Kelly
E mail: melkell27@hotmail.com
Location: Canada
Date: May 2010

I am going to attempt to keep this focused on the facts and details of my experiences, in hoping that they may help others...Diagnosed at 19,(but suffered since age 10), I had no idea what I was in store for. I have been prescribed every B.C pill out there, had 9 laser/laps, including an appendectomy and a ovary being removed. I opted for every and any treatment out there, with the hope of gaining even a little relief from the constant, excruciating, debilitating pain, bleeding heavily for 8 or 9 days every month, severe PMS, many, many cysts (including "chocolate" cysts rupturing), migraines, and every other possible symptom. This hope and struggle proved futile. The treatments I tried had succeeded in giving me all the side effects, and none of the benefits- some of these effects continue to plague me long after the course of treatments were completed. I cannot stress enough, the complete degeneration a woman’s body can go through, when faced with a very severe case of Endo, which doesn't respond to anything. Life altering is not a sufficient word...11 years after diagnosis, I have learned much about this disease and the totality of destruction it has wreaked on not only my body, but my entire life. I could easily write 10 pages about the pain, the gruelling frustration, the awful side effects of drugs and treatments...instead, I'm opting for writing about strength, sheer determination, and the stubbornness that allows me to continue fighting with an effort no less than a dying animal. Now age 30, for the first time, we have been trying to conceive a child (so far have miscarried twice, early in the pregnancies)It has been more than a year, and while I applaud those who decide to go to great lengths to achieve pregnancy, I am not one of those elite women. At this point in my life, my husband and I have decided that it is high time I begin to enjoy living. I am sure I will be having a hysterectomy before much longer. I truly think that one of the saddest things in my life has to be the fact that I can still remember what it was like before all of this happend; if I couldn't recall that time period, it wouldn't hurt quite as much. When people mention to me that they don't know how I "put up" or "deal" with all of this, I simply reply, "Well, give me no choice, and I can just be a remarkable person!" To those starting out early in their struggle, the best advice I can give is to spare yourselves the "Why me's"...Why not you? Why not me? If you are blessed enough to have a remarkable family and support system, as I am - you will never be in this fight alone. And that, my friends, is just as powerful as the disease itself. God Bless, Melissa



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