Endometriosis Stories Page 45Name: Carol Email: shiny.whinky@gmail.com Date: Dec 2011 I am 25 years old. I was diagnosed with endometriosis in Sep 2011. I had a laparotomy surgery for the cyst removal. My doctor informed me that I had lot of scar tissues and asked me to plan for pregnancy within first 6 months after the surgery. I always wanted to have a baby. I got 2 regular periods after the surgery. I am getting the same old backaches again and I am feeling so restless. I was thinking that I would conceive this month.. All this backaches coming makes me worry.. Can someone please advise what I should be doing? Name: Brandie Email: brandiegahm@yahoo.com Date: Dec 2011 I was very young in the 70’s having pelvic pain all the time and because I would use the bathroom so much my mother though it to be bladder problems. I seen many doctors who said my bladder was small and as I grew it should too. By the time I was 13 my pain would keep me from school and most activities. When I was almost 15 I started my period which was more pain then I could bear. The pain went on and the doctors said I would never get pregnant because of endometrioses and it didn’t matter because the pain with sex well you all know how bad that can be. But somehow by the grace of God I got pregnant and had a baby at 18 years old which the doctors said this should help my endometriosis. But One year later I was having a Laparoscopy and then my right ovary removed at 19. Over the next two years I took pills and had tests and lapo’s to remove more endo cells. I tried to hold a job but couldn’t because of chronic pain and then at 21 the doctors did a complete hysterectomy. Which for the first few years was very hard on my emotions and bladder because the endo was found there too so three bladder surgeries followed the hysterectomy. Then for a few years I worked and lived my life somewhat normally. It has now been 15 years and I have osteoporosis, bladder stones, colitis and endo cells growing inside again, I ask how can that be after all I have been though. I am 37 now and have more problems than an old person. Name: Kate Email: katerenee842@hotmail.com Location: Australia Date: Dec 2011 Gday, I am 27 yrs old married 2 boys, Back in 25 dec 2010, I experienced The worst Period pain i have ever had in my life, I couldn’t walk i was crying and i didn’t know what to do, i had to go see my gyno in my local area a few times, Things settled down after my period finished, but then it started again, meanwhile thinking it was normal didn’t think anything off it, then I started have bad pains ovaries and cysts bursting constantly, emergency visits regularly then i took action, went to my local doc n said that it was my bowel. which i had problem in the area but i was burning constantly in my woman’s area all the time, in the mid yr i was that bad i had to be on heavy pain killers to now there just lollies cause I found out i had endometriosis, the Gyno from my local hospital said only a few woman get it and u cant have it. I said i have all the Symptoms and i am so sore n in pain i would wake up at night clenching my bottom half having warm baths so and so on. Then they took action. had ct scan nothing showed up and made me look like a complete moron. so i walked ut of the docs surgery going to chemists n so on. then finally i got a letter stating i having a laparoscopy and gonna see wat they can find, nervous as I had to do it. Then Finally had my Operation. Guess What they found. Endometriosis, alot of it and adhesions. I also had a Menopause injection as well from my doc in the city to see if it would break it down but it never worked,. U would have to burn it. Anyways I was like I told u had Endometriosis i have all the Symptoms for it. This friday i will see the pics n everything n let the doc know it has come back again only after 2 months. So pls.. if u have any doubt always go back n ask for a second opinion all those docs saying about no u cant have this or that.. look it up.. read it up. Name: Elizabeth Email: Elizabeth.denton90@gmail.com Location: United States Date: Dec 2011 I was diagnosed with ovarian cysts at the age of 14 after months of horrible periods and extreme pain. I at one point had 7 cysts at one time, one being the size of a grapefruit ( I only weighed about 110 lbs at this point in time) I soon went on the pill as suggested and the cysts would come and go with my period. I had to leave high school bc I was in such bad pain around my period I would miss 2 out of 4 week is school monthly. My cysts finally got under control but I was still on horrible pain, I had my first laparoscopy in 2008 at the age of 18. Come to find out I now had endometriosis. Stage 3. My obgyn burned as much as she could but had to leave what was left on my intestines and bowls as not to perforate them. I got better for about a year, felt normal finally. Then the pain started again I tried lupron depot shots- and after 6 months, $5000, and 20 lbs later I have up on the shots. I went to a 'specialist' who put me on 2 high dosages of birth control a day. I no longer got my period. He wanted me to go up to 4 birth control pills a day!!!! Which most likely would have killed me my obgyn told me later. Pain still never went away. In 2010 I had my 2nd laparoscopy which my doctor found some endometriosis but most pelvic congestion syndrome. The veins on my ovaries and all inside my pelvic were varicose and enlarged. The pictures were shocking!! She said she thought it was most likely from the high dosages of birth control the 'specialist' put me on. Not much has been done. Since then I've tried acupuncture, pain management anything I can think of. At this point I live on Vicodin just so I can get up in the mornings, and recently lost my job. This website is incredibly helpful it reminds Me that I'm not the only one and my symptoms are real day after day feelin this way sometimes I think to myself ' maybe you're faking it?' I know obviously I'm not but to hear others going through it and the symptoms given reminds me it's not my fault and I've been trying to fix this since I was 14. I am 21 now and still looking to feel normal. Name: Jillian Tenaglia Email: jtfindura@gmail.com Location: United States Date: Dec 2011 ***READ**** With many symptoms including infertility, painful intercourse, bowel problems and fatigue, I started doing research. Although it has been a problem for so many years, with doctors telling me I am fine and nothing is wrong I really didnt think to research on my own. I finally did and I came across a miracle worker. His name is Masahide Kanayama. Do not let your OBGYN or any other doctor perform any surgeries or put you on any medicine especially LUPRON until you have talked to this doctors office. I have come to find there are not that many endometriosis specialists in this world and Dr. Kanayama is one of them in NYC. I cannot wait to see him on January 11th! Just reading all of his patients testimonials makes me cry because I honestly think I have found a miracle worker and he will heal both me and my sister! I just want to spread the word. Name: Lenore Bach Email: Lenore@satisfice.com Location: United States Date: Dec 2011 The diagnosis for Lenore was delayed by over 3 decades resulting in disabling damage to her internal organs, but she eventually found the best surgical help from an endometriosis specialist There is an 11 inch laparotomy scar running down the front of my abdomen, the result of undiagnosed endometriosis left to multiply and fester inside of me for more than three decades. Today I am 51 years old, and I had one of the most advanced cases of stage IV endometriosis that my surgeon had ever seen. Even as a teenager, I had painful periods with severe backache, headaches, cramping and passing blood clots, but I just took some aspirin and went on with my life, because after all I was very busy and there was much to do. In my late twenties, I was sick and in pain with my period for three weeks out of the month. I knew something was wrong, but I didn’t know what, so I just kept on going. I married at 31, and had trouble getting pregnant. Eventually I did get pregnant with the help of weekly acupuncture treatments and a macrobiotic diet. The pregnancy shifted all of my hormones, and because of the increased progesterone I felt the best I had ever felt in my entire life. After the birth of my only child when I was 34, I did the same thing as before, I just went on---I had to, because now my life was more busy than ever with a beautiful, healthy new baby boy to care for. But my strategy to just keeping going could not go on forever. And stage IV endometriosis finally stopped me in October 2007, when I was 47 years old. I ended up in the hospital after constant abdominal pain, vomiting blood and not being able to pass a bowel movement. The MRI showed a swollen mass in my upper right pelvis. Surgery was scheduled for the next day, and because the surgeon had no idea what he was dealing with, the best course of action left at that point was the invasive and aggressive abdominal laparotomy. It didn’t take long for the surgeon to find what he was looking for: a 100% obstruction of the bowel at the ileocecal junction caused by endometriosis---the short explanation: endometriosis lesions had wrapped around my large intestine and strangled it shut. A bowel resection was done, I lost one foot of bowel that day. Endo had also encased my left ovary causing a chocolate cyst, so my left ovary was removed along with my appendix that was also covered in endometriosis. This was the first time that either my husband or myself had ever heard the word “endometriosis.” After surgery, I was so happy to have that terrible pain in my pelvis finally gone. But my happiness and sense of relief was not to last long. About 4 months after surgery I started having trouble passing bowel movements just like before. Not again, I thought---what can be causing this now? Certainly another bowel obstruction could not have formed in such a short time. I consulted an expert on endometriosis, who advised that more than likely there was indeed a second near-obstruction deep in the cul-de-sac of my pelvis that the surgeon had not seen—meaning: the surgeon had taken out the first massive obstruction and believing that to be the problem, had closed me up not realizing that a second mass of endometriosis was in the process of obstructing the lower bowel deep in my pelvis. The second near-obstruction did not present like the first total obstruction. This second obstruction was not as active, and did not cause the extreme pain of the first obstruction, so that gave me some time. And I needed time to figure out what to do now that I knew it was there. Some days it seemed to get better, and because I was not in a lot of pain, I just went on as usual. Until the spring of 2011, when I finally understood that I was not getting better, and that if I needed a second surgery then I wanted the very best person possible to operate—I needed—no, I required a specialist in endometriosis. I met Dr. Cindy Mosbrucker, MD on June 30, 2011. She is an endometriosis specialist practicing in Urogynecology and Pelvic Surgery, in Gig Harbor, Washington. She took one look at my ultrasound scan, measured the endometriosis mass at 2 cm by 3 cm that was sitting directly on my bowel, and scheduled me for surgery. There would be two surgeons for this second surgery: Dr. Mosbrucker to remove the adhesions, the endo lesions, and perform a complete hysterectomy. And Dr. Linda Pai, MD (also from Gig Harbor, Washington) would perform the bowel resection—this would be my second bowel resection due to endometriosis. For my second surgery, Dr. Mosbrucker and Dr. Pai used a new and innovative surgical tool called the da Vinci Laparoscopic Robotic. It allowed the surgeons to enter my abdomen with six very small incisions, and they could see what they were working on magnified many times by the HD cameras on the robots hands. The miniature size of the da Vinci Robots’ hands allowed my surgeons to work in much smaller areas where human hands could not go; and the no- physical touching of my internal organs by the surgeon’s glove meant less trauma to the organs needing repair. Now, since I have endured two major surgeries using very different surgical methods, I can tell you without a doubt that my second surgery using the da Vinci Laparoscopic Robotic was much easier for me to tolerate as a patient. Here are a few examples why: --I was off prescription pain medication one week after surgery, not even an aspirin ! --I was walking 30 minutes a day, up hills, at 2.5 weeks after surgery—still without needing an aspirin. --At 3 weeks past surgery, I could walk 40 minutes per day, up hills. --At 4 weeks past surgery, people were asking me where I had gone on vacation because I looked so good! Compare this to my first surgery, in 2007, that was a conventional laparotomy: --I was in a lot of pain from the 11 inch surgery incision covering the entire length of my abdomen. --I was on prescription pain medication for one month following surgery, and then aspirin daily after that. --I did not even consider walking to exercise, and certainly did not have enough energy to walk up hills. It was 3 months into my recover before I even attempted to walk 15 minutes. So take it from someone who has been down the very long road of endometriosis: this disease is nothing to fool around with so take it seriously and get the proper diagnosis. Find the best endometriosis specialist you can. And if you need surgery then go with the da Vinci Robots--- you’ll be walking up hills in no time at all! In closing, I am eternally grateful to my two surgeons, Dr. Cindy Mosbrucker, MD and Dr. Linda Pai, MD for practicing medicine at the very highest level of expertise and excellence of care. They set the bar higher for what a really good doctor should be. Please feel free to contact me directly if you have any questions. ----Lenore Bach Orcas Island, Washington September 2011 Name: Rachel Email: Rachel.brown1350@gmail.com Location: United States Date: Dec 2011 I was diagnosed with what my gynaecologist called "significant endometriosis" two years ago during a diagnostic laparoscopy. He said he found significant adhesions and implants. The weirdest bit is that my appendix is supposedly fused to my bowel and pelvic wall and I have been told by a very scared doctor that he couldn't find my appendix. Now I'm having terrible attacks on my right side, nausea, vomiting, diarrhoea and sooooooooo much pain! I cant get out of bed to care for my children. I know it's endometriosis, I'm suspecting it's on my appendix and bowels in greater amounts and I have been to the er twice and won't listen. Has anyone ever had an experience trying to explain bowel or appendix pain as endometriosis caused to a doctor so they'll treat you? If anyone can help please tell me. Location: United States Date: Dec 2011 My name is Amanda, I am now 23 years old and my life unfortunately has revolved around my reproductive system issues for the better part of my life. *Menstruation began at age 11, and the heavy unpredictable periods didn't last long before I started the pill by 12. The pain only intensified over the years while trying to find a BC method that could tame my crazy cycles. I thought my pain was abnormal, but my doctors testing only went as far as ultrasounds (frequently) and every single time provided the same results...lots of cysts. I'm sure you ladies are all familiar with the way too common of a statement; "they hurt, they hurt worse and rupture, and all you can do is wait it out". I started the Nuva Ring at age 14, and still use it to this day. It didn't do much at all for my cysts, but it does regulate my cycle. For years it was draining to go through ultrasound after ultrasound, hoping for a significant finding, but always hearing same thing..."just cysts, tough it out". *Everyone here knows the symptoms; exhaustion, lower back pain, excruciating pain (most especially during menstruation), pain during intercourse,.. all summed up, just constant debilitating pain in general. I had it all. Luckily in 2004, at age 16, my doctor performed a laparoscopy, where he discovered what he called "moderate to severe endometriosis" and burned it off. The procedure went as planned, and I got much (but not total) relief for months afterwards. I no longer had constant 24/7 pain. I felt like I had it figured out, and assumed that the still extreme menstrual pain was what normal girls felt. *The symptoms returned all too quickly about a year and a half later in 2006. Of course, there were more ultrasounds with the usual; one or two big cysts, and a sack of small cysts on my ovaries. I went under again for another laparoscopic exam, where we got the unexpected find of an approximate 30% return of the previously removed endometriosis. It was again removed, with the less severe procedure leading to a more difficult recovery. My doctor then followed it up with Lupron injections to try to control the quick regrowth of endometriosis. And once again, I will leave this short and simple for everyone out there who has had to go through that. 6 months of injections=losing your mind, spirit, and any sense of control you had in life...for 12 months. NEVER again. When i really dig down past all of the horrors, I do know that the injections helped my pain a great deal, and that it was very faint for a good year or 2 after that. *At age 20, the pain was gradually increasing, and didn't take long for it to become yet again, debilitating. Not being able to leave my bed with the comfort of my heating pad more often than not. I was taking 800mg ibuprofen around the clock, and was trying my best to avoid the prescription pain killers. More ultrasounds, same results. UNTIL one of the techs mentioned polycystic ovarian syndrome. I asked my doctor, and he said it would only cause unwanted facial hair and maybe some acne..that the pain was all due to my continuous ovarian cysts. At this point, I gave up.. on doctors, on ultrasounds, on finding relief, and worst i gave up on myself..hope for a good quality of life, hope for being a mother were all disappearing because i couldn't get the answers I was so desperately seeking. *April 2011, age 22; I was rushed into the ER after experiencing pain that I thought originally was a cyst about to rupture, but intensified over the hours into a pain i could not bare to sit stand or lie down..the worst pain of my life. They found in a CT scan my right ovary was torsed in the center of me. I was rushed into surgery and so stubbornly refused to let them take my ovary. The OB/GYN surgeon whom I had never met before urged me to consent for the removal, but I am WAY too stubborn! Against medical belief, my ovary which was 3x larger that normal survived, with its 4cm unexplained solid mass disappeared. Great success! *Thank goodness for this surgeon, as I have been following up with him on all of my GYN issues. He has made a world of difference as far as his approach goes. He found that polycystic ovarian syndrome, and that was the FIRST TIME i was informed of all the awful outcomes that it can bring. My original DR failed to mention that it causes infertility and pain as well. *TODAY (12/27/11) I followed up with my doctor after a recent ER visit for massive bleeding and pain. There were no cysts found in my US. He and I both believe for many reasons that the endo has returned with a vengeance. He gave me a few options, and here they are: -Lupron (like i said, NEVER AGAIN) -Pregnancy (I am in a long term relationship, but don't feel prepared for children for at least another year when I am married and a home owner) -Laparoscopy It seems like laparoscopy is the way to go, but the risks scare me. All that I truly want in life is to be a mother. That's all I've ever wanted to be, and can't imagine living without. I am very confused as to what to do. Are there any other OPTIONS? PLEASE, please share anything with me..any advice or insight, no matter how big or small. I am so lost and feel so scared. I wish that I had a map to lead me through the best actions to take, but between the POS and endo, I am really feeling hopeless, and even worse..helpless. WHAT DO I DO? WHERE CAN I TURN? Thank you SO much for reading this, and hopefully I will receive some feedback. You all are amazing for going through something like this in life, and I think its wonderful that there are places like this where we can go for support. It makes me feel not so alone. I wish all of you ladies the best of luck in everything that you do, and remember you've got all of us behind you when you need somewhere to turn. |
’He who takes medicine and neglects to diet wastes the skill of his doctors' - Chinese Proverb ‘Don't get discouraged; it is often the last key in the bunch that opens the lock’ - Anonymous ‘The more serious the illness, the more important it is for you to fight back, mobilizing all your resources-spiritual, emotional, intellectual, physical’ - Norman cousins ’The art of medicine consists of amusing the patient while nature cures the disease’ - Voltaire ’Every patient carries her or his own doctor inside’ - Albert Schweitzer ’It is part of the cure to wish to be cured’ - Alexander Pope |