Endometriosis Stories - Page 16

Loren Umenhofer
lmcneil@yahoo.com
United States
Dec 2007

I was 28 when diagnosed. Endo pain masks it self so well, I don't know how long I was suffering with it before it got so bad that my Mother found me curled up on the floor of the living room, where I had been for over a half hour unable to speak or move I was in so much pain. Even then this incident was the "rock bottom" if you will after three months of multiple symptoms which we had caulked up to everything from colds to constipation/gas to lack of sleep and stress, etc. I went to my GP and was seen there by four different doctors. When they suggested an Ultrasound to try and find out what was, I went to my GYN. She immediately thought Endo and would have know if I had know that the symptoms I had had for years (heavy periods, cramping, stomach aches while menstruating, constipation and alike) where in fact symptoms of Endo. But I didn’t know. By the time it was diagnosed my uterus was 13weeks distended, I hadn’t had a full nights sleep in three months, after the Laparoscopy (two Ultrasounds and an MRI later), my insides were so covered with Endo you could barely make out the uterus, ovaries or bowels and it was decided that what had me on the living room floor was one or more chocolate cysts having burst. That was almost six years ago now, having controlled the Endo with medication (Lupron) and taking the pill consistently (more or less), my symptoms and the growth of the Endo has been minimal. But now as my Husband and I are trying to conceive the symptoms are coming back and they’ve added a trick or two – infertility and all that comes along with it. I’m 34 now, had one rough of IVF which didn’t take and it’s now thought that I might have Hypdro-Splinx (sp?) fluid in my left tube. I thank all who are bringing Endo to the forefront. I might not have had the chance to have a child or live pain free if it wasn’t the case. And the knowledge I now have will help me recognize trouble before my friend or daughter has to suffer. But I wish I had known sooner. Educating woman on the existence and symptoms so they know what to ask and when, as well as further research into case and effect will help minimize the damage Endo does both physically and mentally.


Adrienne Smith
kottontail2003@yahoo.com
United States
Dec 2007

Well, here goes. After reading all the stories on here, I never realized that there were so many women out there that are/were going thru the same things that I am currently. I have felt so alone in this struggle for the past 4 years. Right now I am sitting here, with the weight of the world on my shoulders, trying to decide whether I should have my ovaries removed. I had a partial hysterectomy in Feb. 2006, and that was supposed to be my miracle cure! Such a cruel joke that was played on me!!! You have to forgive my sarcasm, its about the only thing I have left. I was pain free for about 6 months after, and in Dec. 2006 I was going in for my 6th laparoscopy. I was diagnosed with endometriosis in 2004. I was 24, single, foot loose and fancy free prior to all the problems. I have always had horrendous periods. My cramps were like labor pains to me, and I have never had a child. When I turned 22, my life went downhill from there. My periods then grew from 5 or 6 days to 3 or 4 weeks at a time, and my clots would be the size of baseballs. Yes, you read that correctly. I said baseballs, not golfballs. Fortunately I was working for a large health insurance company at that time, and had pretty good benefits, so I could get whatever medical care I needed. And boy did I. I then became anemic, due to bleeding for weeks at a time, I was also taking Vicodin for the pain, and buying overnight maxi pads and wearing two of them at a time. Life was not fun. I have averaged about 2 laparoscopies a year, just so I can be cleaned out, but the cycle never ends. I'm pretty much at my wits end right now, and I truly don't know what else to do. I wanted to have children. That has been taken away from me. I want to lead a productive life. That is being robbed from me because I am in pain everyday. I'm so tired and the headaches are unbearable. Sleep is interrupted because I wake up in pain. I have seen so many doctors and gotten second opinions. One doctor before I had my hysterectomy told me that it sounded like IBS and I should get that checked out. I go to the gastro guy, and he tells me that whoever referred me to him was an idiot. I don't have gastro problems. At this point I was bleeding for 12 weeks, I looked like Casper the Friendly Ghosts' little sister because I was so pale, I had no energy, and I was in excruciating pain. I begged them to take out my uterus. I told them to donate it to science. So here I sit, on December 7th, 2007, still in pain everyday, still taking narcotics and opioids which make me feel like I'm an idiot. Just so I'll be pain free. Then I read on this site about the woman that had her ovaries taken out and still had problems because she was taking HRT. I don't know what else to do. This has consumed my life and I feel like I'm losing my mind. I am a professional woman, and I can't see my clients because I don't know which one of my personalities is gonna come out while I'm there. I've done the Lupron, the birth control pills, the anti depression pill, I've gained so much weight from all the meds, which is really bad for me because I had gastric bypass in 2002, where I lost 137 pounds. I have gained 60 of them back due to this mess. I have tried going off everything to see if I could lose it, but it didn't work. I'm really confused, frustrated, tired, and I just wish I had some answers. If there is anyone out there that can help me. I'm tired of crying everyday!


LeeAnn G
sugarplum1821@excite.com
United States
Dec 2007

Ok where to even begin! I started having my period when i was 11 years old. Things went down hill from there. My pain was severe from the beginning. At 16 i was pretty fed up with living life this way, did some research on the internet and found endometriosis. I tried explaining to my dr, who thought i was nuts by the way, and after 9 months of trying to convince her i needed a laparoscopy, it finally happened. I was diagnosed at 17 and was told that the extent of my endo was pretty bad and that i would never get pregnant and if i did it would end in miscarriage. When i turned 21 i got pregnant thank god and had my baby successfully. However up until this time every doctor assumed i was just crazy and thought the pain was "all in my head". After i had my daughter i had some relief for about 3 months and then it came back full force. Life has been hell ever since. I have had doctor after doctor tell me nothing was wrong or try to put me on pill after pill and nothing worked. I am now 24 and am addicted to pain meds and have to double up the doses just to get some relief. My family doesn't understand, my fiancée doesn't understand, and my job really doesn't understand. This disease has all but ruined my relationship with my fiancée. Sex is extremely painful and i feel like crap all the time. It's hard for people who don't have endo to understand why u are always sick, why you can't be intimate, why u don't even want to get out of bed. One of my major problems is i have an active 2 year old and i am always laid up because i hurt so bad. It makes my back hurt, basically everything hurts. I know i have depression and i feel like giving up a lot of the time. Every doctor in the last two years has pretty much thought i was a basket case even though i was diagnosed at 17. I had almost given up when my physician referred me to one last dr. I was reluctant to go hear the same stuff again, but thankfully within talking to me for 5 min he decided to do another surgery on me. I will be having that next month and hopefully it will have some relief. I hadn't had a laparoscopy in 7 years and this new dr. couldn't figure out why no one wanted to do anything for me. Thank god for him! I just want to say to all of u women living with this disease, one day you will find a dr. who will listen. Don't give up I didn't and hopefully the surgery for me will give some relief. This disease makes every part of someone’s life feel like you are living in hell, and i just want you guys to know you are not alone. Good luck to all of you hopefully someday we will all get some relief. Lots of love


Bobbi Roeder
bobbijroeder@aol.com
United States
Dec 2007

I've been anticipating a time where I could sit down and respond to all of your experiences with endometriosis. What some of you have gone through is quite similar to what I have gone through and continue to go through and it is extremely difficult to find someone who truly understands me and my struggles on a daily basis. My name is Bobbi. I am 33 years old, married and have a 3 year old little boy. I have had "female" problems since the age of 12... From irregular periods, to painful, heavy periods, to a scare of cervical cancer, infertility, PCOS, and endometriosis. I was blessed with having my son after seeing a fertility specialist and taking fertility hormones - at that time in my life I was told I just didn't ovulate. I had a high risk pregnancy, but after an emergency c-section, my son was born healthy and that's all I had prayed for. Once my son had turned one, we decided to try for another baby, however we weren't so fortunate... (However, I was told there might be hope with the help of IVF)... I began having significant pain - and I describe it as labor contractions in my lower back, and it is as though I am delivering a child vaginally. The pain varies in intensity from day to day, but it became debilitating and not to mention I became quite depressed. (I was already depressed due to my infertility issue). I had been in the emergency room due to heavy bleeding that had gone on for over 3 weeks. The doctor said I was anemic, to take iron pills and to begin taking agestyn to stop the bleeding. Well, the agestyn didn't help, it may have lessened the bleeding a little, but once the 14 day script was gone, the heavy bleeding began all over again - this went on for 44 days... I was in and out of the E.R., I was going to or calling my family doctor repeatedly (my OBGYN was on a 3 month LOA). It wasn't until I was at work (I am a nurse) and had nearly passed out in the bathroom, then transported by ambulance to the hospital that I was finally seen by another OBGYN - who immediately said I needed to have surgery... she performed laparoscopy and then told my husband afterwards that my insides were one of the worse she's seen and that she would discuss any chances of pregnancy at my post-op visit in 2 weeks... I woke up from surgery and my husband was in total dismay because NOTHING had been done due to the severe scarring that effects every organ in my abdominal region... so in the meantime I am in so much pain, bleeding still (although not as heavy) and unable to work or even lift my 3 year old son! I cry all the time and finally my parents had enough of seeing me like this they contacted my doctor and told them I need to be seen. The OBGYN saw me that day and told me there was NOTHING she could do because of the severe scarring - that she suggests a hysterectomy. I told her I hope to have more children - and she said all she could do then was to manage my pain with Narcotics and anti-inflammatory, and if my bleeding becomes heavy to prescribe meds for that... so that is where I am today - I do have an appointment with a specialist out of state to discuss IVF and at that time I will discuss if there is anything that can be done further to ease the pain/bleeding. The appointment isn't until the 3rd week of January and I just hope that I can last that long. I did contact my family doctor and requested an anti-depressant - because this has been hell for me and I feel so alone without anyone to understand what it's been like. I thank you all for sharing your experience with all of us who suffer from this - it is comforting to know that there are other people out there who can acknowledge your thoughts and feelings - because sometimes I feel as though I'm going out of my mind... Although I would not wish this on anyone - I am grateful to have found your stories! If you have a spare moment I would appreciate hearing from you. Thank you so much - Happy Holidays to you and your Families! Bobbi bobbijroeder@aol.com


Erin Shiel
ecs031980@yahoo.com
Dec 2007

Wow! I've read everyone's stories and mine does not even seem to compare. But then again, I don't know what the future holds for me. I was just diagnosed with endo about one month ago. My periods had always been normal. Only lasted 3-5 days and cramps were what I thought to be normal. When I turned 19 however I was constantly having abdominal pain, nausea, severe gas, constipation. I was at the ER constantly. Saw a gastroenterologist for over a year. Was given ultrasounds, upper gi's, catscan, you name it. I was diagnosed with irritable bowel syndrome. I was on so many medications for the pain and to control digestion. I took antacids so much and relied on gas x constantly. When I turned 22 I all of a sudden started getting frequent uti's. I was having constant pelvic pain and developing cysts on my ovaries. Well now I am 27. I was rushed to the hospital by ambulance in May of this year due to a stabbing pain in my right side. After a catscan, I was told I had a cyst on my right ovary that ruptured. After rest for a few days I was fine again. I went to the gyno for my annual checkup in October. I was then put on seasonique, a new birth control that you only get your period 4 times a year. After a few weeks on the pill I started getting severe pelvic pain. I then discovered a cyst on my left ovary had ruptured. But then the pain still continued after days. So severe I could not go to work. I went to the gyno and had to see an alternate dr. because my dr. was not there. I was told that it was bowel related and to take some pepto bismol. After 4 days I was in such severe pain I called my dr. and he saw me immediately. He scheduled a laparoscopy for the following week. It was then he discovered the endo. I was also told my pap smear was abnormal and I needed to have a colposcopy. After the procedure, I was miserable. I was so constipated and all the gas from the procedure built up inside me and I could not release any of it. I felt like I was in labor for 2 days until days of laxatives and enemas to finally help me go. Then, I had to return to the dr. for the colposcopy. My results came back saying that I had inflammation in my cervix. I need to go for paps twice yearly now. I was told that the birth control would help to eliminate my symptoms of endo and to take it consistently to entirely suppress my period. I was told that it would take 6-8 weeks for my body to heal from the procedure. My dr. supposedly put dye on my tubes to help eliminate the pain. I was told I would not know if it worked or not until I was healed from the surgery. I have still been in pain. Varies from day to day. Have been in constant intestinal distress. Does not matter what I eat or do not eat. I have gas, abdominal pain, pelvic pain, bloating, cramps & back pain. Not to mention I am irritable as can be and fly off the handle at everybody. Now all of a sudden I have been bleeding for 11 days straight now. Some days very light and others heavy where I need to use tampons and pads. This is causing extreme cramps, irritability and gas. The seasonique packet says that abnormal bleeding can be expected within the first few months. But for this long? I have been on every website and even got the book endometriosis for dummies. I've tried to eliminate things from my diet. I am so emotional, I have no energy and all I want to do is lie in bed with my heating pad. I lost my job because I was out of work so long. I break down crying constantly and it's affecting my entire well being, my relationship with my boyfriend, my parents and my friends. I need some advice. I want to have kids some day desperately. My dr. told me he would suppress me on birth control until I decided to get pregnant and that would eliminate symptoms until after the baby is born. Does anyone have a particular birth control or medication that they think has worked best for suppressing their symptoms?


Katy Thorn DeKoter
katy.coyote@mchsi.com
United States
Dec 2007

Words of wisdom from a woman who has had years of experience!!
I didn't start having intolerable pain until I was in my early 30's because I had three children starting at 18 and was either pregnant or breastfeeding for several years. Now that could have staved off the endo for several years OR I didn't really have it until my last child which was my first cesarean. But following that I had 7 first trimester miscarriages.....so it makes me suspicious the surgery is what got it started (as some theorize.) Then I just stopped getting pregnant. After reading an article about endo in a magazine I began the research that led me to a grass roots organization in Wisconsin who sent me materials. That was in the mid 80's. So, living in Iowa, off I went with a request for my choice (Danazol) in hand a GYN at Mayo clinic. I figured since it was a female doc I might have better luck getting the kind of treatment I wanted. Well, that sure didn't happen. Mayo is a "teaching" institution, the last place they are gonna take any "risky" chances on new treatments. I went in and had to suggest it might be endometriosis because it was obvious pretty quickly they knew almost nothing about it except total hysterectomy! They started off with "we gotta get in there with a lapo and take a look around, saying "it's not cancer" but those huge blood filled cysts we saw in the ultrasound, we can cut those out and clean out some of the endo. I was almost ready to agree until I asked what they'd do if they found anything "questionable" once they were in there. "Well, we'll make that decision as we go." "But, I don't want my ovaries or uterus removed without my consent and time to think about it. I would rather just be treated with Danazol first really." I said. "Oh, Danazol can never get rid of those cysts. And besides, it could be cancer" they evolved after bringing in her supervisor and then and the another until their were four docs in the room at the end of 3 hours and further ended with "we just had a woman die the other day because she didn't get the surgery done soon enough" and "it Could be cancer". Totally the opposite of how we'd started out three hours before. When I asked what all they'd take out without asking me they even listed my appendix! I knew I had to get outta there. I needed a second opinion. I went from hopeful, to concerned, to compromising to TERRIFIED! I cried the whole 4 hour drive home. I had to collect my thoughts and information and this pocket of the country as I knew certain treatment seem to exist in pockets of the country. I had heard too many horror stories of women going under the knife to wake up to all kinds of missing organs. Another example of this careless treatment of women STILL existing (besides criticisms over the many years of too many C-sections, too many hysterectomies, and now too many prostrate cancer treatments unnecessarily) the latest criticism was women having too many mastectomies, biopsies, mammograms and even now women who have mastectomies that are done so thoughtlessly that reconstruction isn't an option. Doctors are STILL working in the dark ages for the most part and worst of all, either don't know the ramifications of treatments or don't care. Anyway, I got a follow-up letter from their legal department to warn me again that I could die and I wasn't making a good decision not to have the surgery. So I traveled to another state and got a second opinion, another ultra sound but this time I explained what had happened to me at Mayo Clinic and I really wanted to try a non-invasive treatment first. He was reluctant but knew I'd go to someone else if he didn't work with me so he had me start birth control pills, which, of course only made it worse. I called him in a month and told him I was worse and asked if we could start the Danazol. He agreed to it but would only prescribe a minimal dose for six months. Well, I'd already read it would probably take a maximum dose for a maximum period of time to really get rid of it all, but I had to work my doctor up to it. Good thing he respected my self-education on the subject and as I coaxed him along he worked with me. After all, he had HIS records of reasons for escalation to keep too. I ended up on the max dose (I forget now....600mg per day or something like that and I ended up stringing it out for 14 months.) Ahhhhh.....such relief. I figured if I started growing a beard or any of the other scary things that are listed for this drug that I might have to rethink. But in my case I'd never felt so good as I did those 14 mos. The only side effect was a few pimples and the worst was the texture of my fine blond hair became like a bad perm. But it was worth it. I resumed periods after a couple of months and never had pain again. I still have my uterus and my ovaries and am 59 and post menopause and fine. I hope my story helps someone. The hardest thing is how hard it is to get the kind of treatment you've decided you want. It takes so much tenacity and courage to defy your doctor instead of just giving in. But it's worth it.....as I have found with other debatable treatments I've had to encounter ever since (mammograms that mash your breasts - and that doesn't cause damage? and docs who want to do biopsies in the most borderline situations, knee replacements that are old fashioned and far more miserable than necessary.....it never stops.) You have options. It's your body. No one is gonna make as good a decision about it as you if you take your time to research your options. It's the scariest thing to take responsibility for your own body but you ARE smarter than your doctor if you do your homework. Don't be lazy. You might regret just agreeing to trust him/her. edibility of having done my homework and even said "you have more info on this than I do right now". I still had to work with him to get him to my goal. I had to agree to take birth control pills first (an old method of treating endo that only makes it worse for most women) but called him up in a month and said "it's worse" so he'd go on to my choice of danazol. Even then, the standard dose and period of time to take the stuff was only known to the Endometriosis organization and I had to call him a couple of times to get the dose up to the level it needed to be for as extreme a case as I had and I had to talk him into taking it for twice as long as recommended. (In those days it was for only six months) But it was heavenly and of the long list of scary ridiculous "possible side effects" never occurred. I never grew a beard, lowered voice, etc. It's a testosterone anti-hormone type med. The only thing it did was temporarily change the text of my hair to more coarse. It took it at a max dose for 14 months........the best months of my life physically! No periods. Wow. Great. Unfortunately, it's only for those that don't plan to have any more children. There might be another product on the market by now. I believe I read about something that's a nasal spray or something, so it's worth a little research that I haven't done in a while. Anyway, Dr. Schacht was just as conservative as the rest but knew I'd come to him for alternative treatment and was willing to listen to me and work with what I wanted. (I'd already had 7 consecutive miscarriages.....I wasn't having any more children even though I wanted more) But I had to be sweetly demure in my suggestions of "well, what I'd really like to try doctor is...." and then I'd just work him up to the next step of my goal as we went along. I had to compromise a little to get what I knew I needed in the end. Sixteen months later, after 14 of danazol, my ultra sound showed all cysts gone, all pain gone, pain with constipation that was excruciating gone, periods returned and I never had a bit of pain again. Didn't stop having periods for the next 10 years. My hair even changed back to it's original texture. That's my story. I never had the lapro, never had the biopsies, never had surgery. Endometriosis is still a misunderstood condition. It takes so long to get the medical community to listen to we grass roots folks but we always turn out to be right. In my lifetime I've seen it (too many cesareans, too many mastectomies, too many mammograms and biopsies unnecessarily and too many prostrate surgeries, etc. etc.) I heard on the news the other day a movement to get docs to start telling their patients their options for mastectomies that they don't bother to inform the patient - apparently many are done without the possibility of reconstruction.....something we take for granted these day.


Sharon Kross
denverbroncofox@aol.com
United States
Jan 2008

GENERAL INFORMATION: Even though endometriosis isn't a killer disease, it still takes your life. It robs you of normality, a life and it can even steal your fertility. Lack of knowledge and understanding destroys victims of the disease. It kills their sanity and takes everything. No visible signs from the outside, so well hidden within. The only thing a victim can do, is hide from the world and try and fight it alone. No support from doctors and hardly from specialists! Why can't they try and understand and stop fobbing people off?!? The only way I can describe endometriosis is, it's like a cancer, without treatment and understanding it almost certainly will destroy and spread within your body. No outward signs of the disease except pure pain, which stops you being the person you're meant to be. Unable to move, unable to breathe, curled up and sobbing through the agony you are in. Forget friends, forget family, try anything to stop the pain! Painkillers can be a nightmare too, taking high doses but it doesn't even touch, maybe takes the edge off but still the pain is there. Feeling all alone but not being on your own! Feeling scared and afraid, hurt and betrayed! My Endometriosis Story: Endometriosis came to my life at the age of 19.My mom (lord rest her soul) back then thought it was all normal pain from my periods but unfortunately that was not the case. Therefore, I went on like that until the age of 22, where I was at work one day and one minute I was working the next I passed out and woke up in a ambulance all my co workers said I was complaining of abdominal pain in the pelvic region. So that same day I had my appendix removed and a small cyst on my right ovary. Then I was blessed to have my first and only child at 26 and that was a very dangerous delivery I had to have a c-section and he was born 1 month premature. Then at age of 27 I decided I had enough of this horrific pelvic pain so I went to my gyno and demanded some test to be done and so me and my ex were sitting there and my ex grabbed this pamphlet book that said Endometriosis and he turned and looked at me and said Sharon I think this is what you may have so I’m thinking ok we can fix this so big deal. So I had a laparoscopic operation which is 4 hours long and sure enough Dave was right I was diagnosed with Stage One Endometriosis:"( then it was all down hill from there as i right this Im crying because its a decade later and help for this disease is still the same, but now they have stuff for breast cancer, new machines to detect heart problems Etc. But nothing for Endometriosis because of this disease I have had 14 laps, 3 c-sections, a complete hysterectomy that totally changed my life because i was pushed into menopause at a young age. I went through 12 treatments such as, laparoscopic surgery laparotomy, Lupron Injections, Danazol. Snaril Nasil Spray, prescription pain killers, in the most severe cases like Stage 5 hysterectomy with bilateral salpingo-oorphoectomy (removal of the uterus and ovaries) , 10 specialist and $$$$$$ spent on this stupid ass disease!!!! I thought when I had the hysterectomy that send me into as thyroid problem . i was cured only to find out 10 yrs later its not a cure and there is no cure. So, I suffer from Day To Day I could have been a singer, or a dancer this has stopped me from so many things now im being tested for lupus , and I never knew that endo can spread to other body parts such as lungs, brain, legs etc. Its really scary but with the lords help and my endo angels out there and you all know who you are we will get through and most of my family and husband Tim:)Thank You All So much I hope my story bring some awareness of any kind. PS: Even though I’m in stage 5 of this horrific disease I’m still a survivor because through all this pain i watched my Dad die at home 1994 & my Mom die at home in 2000.My accomplishment achieved were for one quitting smoking and clean now for 8 yrs . I look at it this way I'd rather be a little drugged up then not be here at all. Thanks to all the people whom have supported me. Today @44Im still suffering from Endo pain its so disgusting that we don’t have a cure and enough research yet on this disease. If you would like to chat with me I’m on my space Sharon Kross GOD BLESS ALL ENDOANGELS


Tami
tamisowder@yahoo.com
United States
Jan 2008

I am 36 years old and was diagnosed with endo when I was 19. I started my period when I was 12 and have almost always had really intense cramping during my periods. I had my first surgery when I was 19 and the doc did a lap and burned the endo out. That worked for a while and then I became pregnant at the age of 23 and had my daughter when I was 24. Not even a year later I began having problems again. At the age of 26 I was in the hospital having a 2nd surgery - another lap and also a uterine suspension. Both doctors had indicated to me that the endo was on the back sides of my uterus, ovaries and bowel and was diagnosed as mild to moderate endo. That worked for about 5 years - although I did have awful periods during that 5 years but not to the point of crippling me. The last few years a lot has gone on in my life and I moved to another state so I have just had to deal with it the best way I could - even if that meant missing work and staying in bed for days.....until it passed or was at least tolerable. I have attempted to see OB-GYN docs in the town I live in - I have seen 2 and both wanted to put me on YAZ (tried that and it broke my face out really bad and I was a basket case mentally- so I quit taking it) The 2nd doc wanted to do the LUPRON and I refused. He then said if I refused that there was nothing more he could do for me and that I would just have to live with it. Next week I am going to see doctor #3 (which is also my mother’s doc).....I am praying he will want to help me and not stuff me full of hormonal therapies. I am not a good candidate for hormonal therapies - I couldn't even take the pill!! Not to mention the fact that doctors won't prescribe anything for pain ONLY IBU 600 MG......that does not even come close to touching the pain. I have been in the ER twice in the last month for intense cramping and huge blood clots!!! If anyone has any advice on how to handle these doctors, I would be so grateful!! Or if you just want to share stories....someone to talk to who experiences what I do would be great. I have never in my life been so disappointed with medical care!!! tamisowder@yahoo.com


Julie
United States
Jan 2008

My name is Julie, I'm 39 years old and was diagnosed with stage 4 endometriosis a year ago, during laparoscopic surgery to remove an ovarian cyst. I probably would not have had the surgery, if it were not for a 300+ reading on the CA-125 blood test. Having lost an aunt to ovarian cancer a few years before, I didn't want to take any chances. The surgeon found endometriosis "just about everywhere you can have it"--uterus, tubes(clubbed), ovaries, sigmoid colon, rectum, both ureters, appendix, ligaments, peritoneum, etc, along with numerous dense adhesions in the posterior and anterior cul-de-sacs and on the bowel. I was really surprised even though I had many painful symptoms, because none of the many doctors (3 M.D. GPs, a gastroenterologist, a Dr. of internal medicine, and a D.O.) I had consulted over the years had ever even referred me to a gynecologist, let alone diagnosed me with endometriosis. My periods started at age 12 and I had bad cramps from the first one, but I thought they were normal, so I never asked a doctor about them. It was just something I had to bear for a few days every month. When I went to college I discovered that ibuprofen helped and I started to take it every month. Other than the cramps, I was in great shape. I ate a vegetarian diet, worked out, and I almost never got sick. After getting my bachelor's degree I went on to get a master's and found a professional position in my field. I really loved my job and everything seemed to be going my way. But after a few years, I started to notice that I was having some difficulty getting through my aerobics class, even though it hadn't been before. I entered a "Fun Run" with an older friend and was both puzzled and embarrassed that not only did she leave me in the dust, but so did a lot of frankly elderly people. I was also starting to have problems with weight gain, and having a lot of nausea, vomiting, and diarrhea. Those GI symptoms might have been worse during my period, but I had them throughout the month, so I never really thought they were related. Over the next few years, all my symptoms got worse. The fatigue was so bad that I would sometimes start crying when my alarm went off in the morning, just the thought of getting dressed was overwhelming. I gained 60 pounds. Eventually, I was diagnosed with hypothyroidism. The first week I took thyroid hormone, I stopped gaining weight, though I've never been able to get skinny again. I also noticed an improvement in fatigue, though not as much as I had hoped for. But the gastrointestinal symptoms just kept getting worse. The last doctor I consulted about them was a gastroenterologist. He did an upper GI endoscopy, ultrasound scans of my abdomen and gallbladder, and other tests I don't recall--all normal. I asked him about another gallbladder test he hadn't done, and he got really annoyed. He told me that if I wanted my gallbladder out, he could refer me to a surgeon who would do it, but there was nothing wrong with me. He didn't refer me to anyone else, and it was obvious he didn't want to see me again. An earlier doctor had suggested I see a psychiatrist--a suggestion I had rejected at the time. But I knew I could not keep working if something didn't improve, I was already missing way too much work. And as you might imagine, I was in fact seriously depressed by that time. To make a long story short, I spent about a year in counseling and tried several antidepressants. Nothing happened except that I now became convinced that I had incurable depression along with all my physical problems. Both my psychiatrist and counselor were such sweet people that I felt terribly guilty for disappointing them, but I just couldn't afford it anymore. Soon after this I met my future husband, the one happy event of my thirties. He has never made me feel bad about being ill, even when I had to quit working and we were in real financial hardship. I was hoping that maybe with some time off work, I could get better, since all my doctors seemed to think my illness was caused by stress. It was very stressful to hold down a full-time managerial job when I got sick, even though I hadn't found it stressful before. But of course, my health did not really improve. Sometimes I felt better, sometimes worse, I looked for work when I felt better but never found another position. I began to think I would never be well enough to work again. I also withdrew from my friends and stopped going out much. I felt like I couldn't talk to them about my problems, because the illness I had wasn't "real". I felt ashamed of myself a lot, thinking what a weakling I was, what a failure. I then had two episodes of really extreme abdominal pain, several months apart. During these episodes pain would go down from my flank into my groin, my bowels would stop moving for a week or two, I lost 10 pounds the first time, 15 pounds the second time. I had never been sick enough to lose weight before, but I still refused to go back to the doctors. So I don't know if these episodes were related to the endo or not. When I started having bleeding between periods, though, I made an appt. with a gynecologist for a pap smear, because I hadn't had one for 5 years. That was when the ovarian cyst, and eventually, the endometriosis was finally diagnosed. The operation that was supposed to take 30 minutes, took closer to three hours, and my doctor was still unable to remove it all. To be fair to her, no one expected to find such extensive disease. So after the surgery, I took a three-month Lupron shot. I found the side effects to be really terrible, it seemed like I had a headache and couldn't sleep for 2 months straight. It helped a little with the pain, but I don't feel the benefits outweighed the side effects for me. I still have a lot of symptoms, but I do feel that the surgery helped a lot. Just having a diagnosis makes it so much easier to bear. Looking back on things now, it seems amazing that I was never diagnosed before. But I have to take some of the responsibility for that. I never really believed the doctors who told me that there was nothing, but I acted as if I did. I gave up trying to get better. I was too proud to risk being thought a whiner or malingerer one more time, so I surrendered to my illness and let it become a part of me. Now that I know what is wrong, I wish I had kept seeking a diagnosis. I always wanted to have children, but I didn't want my children to grow up with a sick mother, so I never tried. But I always had this little hope in the back of my mind that someday, fortuitously, the cause of my illness would be discovered, I would get better, and then I would try to have children. I never thought that the diagnosis itself would ever have any bearing on whether or not motherhood was a possibility for me. I hope my story is a lesson to others not to give up seeking health, if you think you're sick, you are. Good luck and good health to everyone.


May
sholmsie@hotmail.com
Australia
Jan 2008

Hello, My name is Fiona and my life changed in August of 2004. I was about to turn 24 and had enjoyed "normal" periods for 10 years. In the July I had moved with my then boyfriend (now husband) to the country and started a new life together working hard on our property. We have an eventful first few months living together, as my husband was in a minor accident and lost part of a finger! I was then working extra hard, helping him with his work also. The pain started in my lower back. There was a time when using a heat bag was a daily thing and having lots of back massages was a must. I soon realised that the pain was related to my cycle, and would start at the time of ovulation and continue until several days after my period. The pain was so bad that I was not sleeping. I felt hopeless and went to a doctor for help. I was sent to a physio to work on my lower back. I was told that I had been working too hard. I knew in my heart it was related to my periods. On yet another visit to the doctor (now January 2005) I pleaded with him to help me. He mentioned the "e" word and I went home to look into it. A scary thing to do on the web, and I didn't find this site at that time. I was referred to a gyno as a public patient (here is Aus we have a public health care system, which allows everyone to seek treatment)and was given an appointment in August!! 7 months later. That is when I made the choice to take things into my own hands. I spoke to women that had the condition and found a gyno that could see me in a week. I had a lap in April 05 and was told I had minor endo on my bowel. It was not removed as they did not want me to develop scar tissue. We decided that I would go on the pill "full time" to manage the pain and have no periods. This was an effective option for me. I then became engaged in March 06 and married in March 07. After our honeymoon, we decided to start a family and I went of the pill. The first period (fake one) was pain free as I did not ovulate. I then went into my first real period excited. Six days before my period was due the constipation started and then the abdominal pain. I collapsed at home one night in pain (you all know the pain I am talking about) and was rushed to ER. I was given morphine and sent home after an ultrasound and pregnancy test were neg. I was back in hospital 48 hours later and then again 24 hours after that. As I lay there in the most extreme pain, I was comforted by a nurse who informed me that childbirth would be a breeze compared to this! I said, but at the end of childbirth you had something to celebrate, this was just misery. I then went back to by gyno who sent me onto a surgeon friend for a lap. It should have been done in November 06, but due to a nursing strike I am now having surgery on Tuesday (Jan 23rd, 2008). I am at the point now where I have bowel pain everyday. After I eat, I begin to experience cramps and nausea and run to the toilet. Next week they will be looking in all areas and remove it all (my orders). I am so grateful for finding this site. It has brought me great comfort knowing I am not alone dealing with this silent disease. I have several sisters, two which have fallen pregnant on the pill - so I am hoping I have their fertility. Keep sharing your stories, good and bad as we all learn from them Best of luck to you all and take care, May


Lauren Matthews
lozzer-ov-s.c.e@hotmail.com
United Kingdom
Jan 2008

I am only 16 years of age and on the 12th of december 2007 i was diagnosed with endometriosis. I had always had a little pain with my periods but the severe pain only started about 1yr ago. I was put on the pill at the age of 13/14 to try and regulate my periods and take the edge off the pain and the pill worked for about 18moths then it stopped working, so i was put on a different pill but the pill they changed me to just made me sick all the time. After 3months of taking the pill i got changed to i was back at hospital. After experiencing the illness with the pill i was completely taken off the pill and since i have been off the pill i never know when my period is going to come, no matter what time of the months it is i always get severe lower back pain and period cramps. I have also lately been suffering with headaches. I have tried all sorts of pain killers, i have tried exercise and pretty much everything else you can think of to relieve the pain but nothing seems to work. When i went into hospital on the 12th of december 2007 for a laparoscopy and an endometrial biopsy, i was diagnosed with endometriosis. I was told they found a small lump of it but I had no idea what it was, i had to look it up on the internet because i wasn't given any information or leaflets from the hospital. Since i went into hospital and came out the same day i have not once heard from the hospital and i have tried to contact them but the phone never gets answered. As time goes by my pain and the endometriosis just carries on building up and getting worse. I wanted kids later on in life but if things keep carrying on the way they are then i guess i may never have children of my own.


Anna Mills
annaamills@yahoo.com
Costa Rica
Jan 2008

SORRY! There was an error in the first post. I too am suffering from severe endometriosis. I started seeing period at age 12 and since then after several visits to the doctor, and at age 26 going 27 i was diagnosed with endometriosis and is due surgery in March 6, 2008. Anyway, I read your story on Endo Resolved and i was touched and wish and hope that i can do something to help. I used to suffer severe pain during my menses until a friend of mine introduce to a lady selling some herbs etc.... I listened and to what she has to say about the herbs then did my own research on them and had agreed to try it since i didn't have much to lose. The names of the two herbs i am going to introduce to you are: 1. GLYCONUTRIENTS PRODUCT (4 pack) - especially the power. and 2. STEMTECH PRODUCT (stemenhance) I have tried both and even took both together at one time and I am telling you, they both worked for me and i was amazed at the results etc.... I have taken mostly the Stemenhance since it costed less, than the Glyconutrienst and or pack and it is just as good taking it by itself but work best taking it with Glyconutrients powder etc.... and the pain disappeared and even my eye sight has improved. My bloated feeling and looking stomach has shrunk and now feel and look normal. The real reason why i had stopped taking it, was because i have no money and other bills t hand taking care of and i also decided to go ahead with the surgery before continue any further with the herbs. My plan was to take the herbs instead of doing the surgery (i wanted the herbs to replace the surgery etc..) but someone suggested to me to take the surgery and have all the endo removed and then continine taking the herbs to prevent or treat the sickness from coming back which i think, the person has a point. (Clean up fist and them try to maintain). So i saved my money for surgery and that’s what i am going to do in March of this year, the Laparoscopy surgery. These herbs that i am introducing to you are herbs that releases stem-cells from the bone marrow to replace old damaged. These releases of stem-cells rebuild your damaged organ or tissue etc... by nesting where ever is gone or is bad and then become cell/s, tissue/s or organ/s of that cell/s, tissue/s or organ/s. Please look up the products and read more on them but i can assure you that you've found help and please remember to discuss these products with you doctor before trying them if you decided to try them. Here are the sites to start your research on: http://www.enhancestemcellsnaturally.com/ http://www.glyconutrientsreference.com/ Caring and concerned person Anna P.S. Please keep in touch.


Emma Harmer
jonandemmaharmer@hotmail.com
New Zealand
Jan 2008

Hey i was just wondering i have had endo for five years now and I’m only 22 however i just want to no can it come back after having it burnt out?? I just feel that I’m grumpy, bloated, angry, and have bad periods (I’m used to that) for about a year now, my marriage is suffering and just wondering if i should go back and see if its grown back again, your answers will be helpful


Kris Marazita
Kris.Marazita@bms.com
United States
Jan 2008

I'm 34 yrs old and I have stage 4 endometriosis with cysts on my ovaries. It has been a struggle dealing with this disease because I use be active and now the pain limits me. I've been dealing with this disease for about 4-5 years. I didn't know I had it in 2000. I thought it was cramps or pains from eating something that didn't agree with my stomach. How foolish. I regret not going to the doctors. If I caught it sooner, I would be better off. The cyst on my ovary was so big, the medicine couldn't dissolve it. I had the cyst rupture 4 times and couldn't take the pain anymore therefore, I went for surgery in Sept of 2007. The pain feels like someone is taking a knife and he or she is sliding it down inside of you. I've tried shots in my stomach as well as birth control pills, the pain still resides. It's very depressing. I don't want to get another surgery because I found by reading some of these stories, it doesn't help at all. Also, I went to a holistic doctor and she told me to eat fruits and vegetables as well as whole grains. And no caffeine or alcohol. This has helped me. I keep thinking, "I'm too young for this". I've learned that the days you do feel well, appreciate them. I feel alone in this, depressed as well. I want at least one child and it's depressing knowing that may not happen. If anyone cares to write, don't hesitate at all.


Crystal
Butterfly1b@yahoo.com
United States
Jan 2008

I am 28 years old, I have been suffering from endometriosis for about 8 long difficult years. I have had 6 lap surgeries just for my endo to come back 3 times worse than it was before. I have been recently told by a fertility specialist that I have a .2% chance of ever becoming pregnant. I have tried everything we could possibly afford to have a child. Now the doctors want to try IVF but there is no way in this world we could ever afford a 30,000 dollar procedure. If you have any advice for me please feel free to email me at Butterfly1b@yahoo.com my name is Crystal


Anna Cucchiaro
acucchiaro@optusnet.com.au
Australia
Feb 2008

I am 35 years old and I have two beautiful children,7&4 yrs I guess im very lucky, as with the horror that Im going through now who would have thought i could have babies. I started bleeding at the age of 9 years old and way back I remember being in immense pain, missing days at school, mother treating this as a normal part of womanhood, but the thing was that much pain was not normal it was the start of endo. I wish mum had let me go on the pill at the age of 15,this surely would have slowed my endo growth ,mum was afraid people would talk about me[being from Italian background, she was very against the pill at my age].So i suffered many years in silence, just accepting this, I've had 2 laparoscopies in the past 2years,burning some of my endo away, but in the last year things have gone from bad to worse, i was in hospital with dysfunctional bleeding for a week and my iron levels were very low, then my gyno put me on zoladex [very intense headaches..bad choice} to put me into menopause so I would not ovulate anymore... well bad mood swings fighting with hubby all the time, was breaking up my family. last visit to gyno, I decided to have hyster, am on waiting list, I also have adenomyosis around uterus. Time is going so slowly while I wait in pain. Does anybody out there have similar symptoms as me, or abdominal bloating like a pregnant lady, shooting pain in groin when passing urine, limping when walking, and just a feeling of tenderness from hips to knees..... wish me luck with my op, and i also hope my story helped somewhat. bye from Anna, Australia.


DEBORAH DAVIES
DAVIES.DEBORAH7949@GOOGLEMAIL.COM
United Kingdom
Fen 2008

HI, IM 27 YEARS OLD AND HAVE JUST BEEN TOLD THAT MY UTERUS HAS PUSHED BACK ONTO MY BOWEL AND BLADDER-DOES THIS MEAN I HAVE A RETROVERTED UTERUS BY ANY CHANCE? I FEEL SICK LOADS AND I HAVE HORRENDOUS BACK PAIN AND I CANNOT SLEEP AT NITE,I CANT REMEMBER THE LAST TIME I HAD A DECENT NITE'S KIP-AGES AGO. DEB X





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