Endometriosis Stories - Page 24

Name: Angela
Email: hyp3rbyte@gmail.com
Location: United States
Date: March 2009

I don't know what to do anymore...I am at the end of my rope and feel so helpless. My endo started when I was 19 years old. I am now 26. I have been on every hormone pill, shot, etc available to try to minimize the endo. I had laparoscopic surgeries, which helped with the pain for a few months, until the endo grew back thicker than before. I had a total hysterectomy. I was ecstatic that I was pain free for so many months. I have one ovary left. 2 months ago the pain started again. I've been to the ER twice, and have an appointment monday morning with my gyn. I have resigned myself to having another laparoscopic surgery. Will this ever end?!?!?! ~Empty in California


Name: Amanda
Email: amandog83@hotmail.com
Location: Canada
Date: March 2009

I've always had very heavy periods for as long as I could remember. I never had severe cramps, but felt like I was pouring blood when ever I got my period. Birth control pills only seemed to work for a few months or years at a time to deal with the heaviness and the length of my period. I was just diagnosed with endometriosis in the last 2 months. I started having severe back pain in July. The pain got so bad I couldn't walk, and was very very sick. I was in an out of the ER 4 times over one weekend, and was finally admitted to the hospital after I saw my family doctor the following Monday. He was amazed I was even able to drive myself to the appointment. I spent the week in the hospital, had tons of tests done, and they all came back negative. After being released from the hospital, I knew something still wasn't right. I continued having to go to the ER a few times a month for either severe pain or nausea. My family doctor told me to see a shrink since he thought there was no physical reason for the pain I was in. I was so discouraged and thought I was going to be stuck feeling this way forever. On one visit to the hospital, a doctor did an MRI for the back pain. On the MRI it showed a cyst on my ovary. I was very quickly referred to a gyno for it. Since I was already scheduled for surgery to have my gall bladder removed, my gyno did exploratory. He found a small deposit of endometriosis. I'm so glad to finally have a reason for my pain. I'm lucky to not get the pelvic pain that some people do, but the back pain in unbearable. The only pain meds that seem to do anything are percocet, morphine or demerol. I was recently put on Depo, but aren’t too thrilled with it yet. I haven’t got my period, but the back pain still gets very severe. I also get the worst PMS I've had in my life. I feel like a miserable person to be around. I'm so glad my fiancé has stuck by my side through it all. If anyone has any suggestions on pain meds that worked, feel free to tell me!


Name: Tara
Email: noendinsight88@yahoo.com
Location: United States
Date: Mar 2009

My name is Tara. I am 20 years old. For the last 2 1/2 years I have been suffering a HUGE amount of pain. It was causing pain in my lower area that hurt so bad I could not even barely walk. I went in for a ultrasound and the doctor told me that they found a cyst on my ovary. So the next couple months I had the pain still there, and it was getting worse and worse everyday, leading from my lower area, to my legs. It was making me hard to concentrate on anything other then how much pain I was feeling. One day I had so much pain I had to go to the doctor. I went into one office and they told me that it was just the cyst causing my pain so they gave me medication, and 1 week later I was still not feeling any better so I went and got a second opinion and the doctor told me it sounded like I had endometriosis. They scheduled me a appointment with my gyno, and told him my symptoms and he told me I was going to have to get a laparoscopy to see if I had the disease. I got my Laparoscopy and it turns out that I do have Endometriosis. I have to get a shot in the stomach of Zoladex every month for 6 months. When I found out I was very upset. To hear that I had a disease that would probably never be cured without a hysterectomy. I never thought I would be dealing with this because having children is my dream, and knowing there may be a chance that I can't really breaks my heart. I even ended up having a miscarriage a couple months ago not even knowing I was pregnant at all. Not only is knowing what could happen bad but the pain effects everything in my life. Every since I started having pain and found out what is wrong with me everything has changed. I am constantly thinking about pain, I am a bartender so it affects my work mood and makes it hard to walk around for a long period of time, and it makes me just miserable. It's so bad that I wake up in the middle of a dead sleep cuz I feel this stabbing pain in my lower area. The only thing that it hasnt caused is pain in sexual intercourse. I got the shot about a week ago, and I still feel a lot of pain. My mood is pretty bad I just don’t want to be around anybody because I feel like I will rip their head off. The dumbest things make me mad, and I cant stand talking to anybody. That's the only symptom I have received so far but then again it's only been a week. I hope I get better and can just live a normal life.


Name: Lauren Gere
Email: vanullasugar13@yaho.com
Location: United States
Date: March 2009

well i am 20 yrs old fun outgoing girl i first got my period when i was 16 (late bloomer i know) and i always was in serve pain on the first day of my period which everyone told me was part of being a woman and that cramps were normal but me now 20yrs old i find myself awaked in sleep by horrible pain i am cured up in a ball crying sweating vomiting rocking back and worth praying for this pain to stop it truly is unbearable. Today is march 12 2009 and i haven’t had my period since nov 21 2008 almost 4 months now.i have had pain in my tummy pain in my back pain during sex and i have noticed a bald spot on my head which developed i guess in the last few months (not sure if its related to my endo)i have had a lot of pain the last few motnhs which i thought was some cyst on my ovaries which i have had 5 cyst rupture since i was 18 so far .but i went to the obgyn yesterday and he diagnosed me with endometriosis and secondary amenorrhea at first it didn’t seem so bad until i read all the complications that come with endo i have no insurance so surgery is unthinkable the dr wants to put me on birth control pills and induce my period but i wonder it the nuva ring was maybe a cause to my period not coming i started using the ring in aug 07 and stopped using the nuva ring april of 2008 abruptly due to my insurnace being dropped .i also heard that it may or will be hard for me to conceive babies i am so upset sad lonley now because i feel that no man will want me i feel like i am broken and no man will marry a woman who cant make babies in fact i feel im not even a woman anymore like the one thing that is the most beautiful amazing part of womanhood i cant even do! were put on this earth to reproduce and if i cant i feell lik a failure like i have no purpose in life! i am sooo sad i pray things will get better i just dont understand how god can give drug addicts babies in their stomachs and someone like me a responsible caring non smoker non drug using individual couldn’t be able to have a baby one day :( anyways i dunno what to do should i get on the birth control pills should i just get the surgery what if i choose nothing and i just wait it out and see if my period will ever come and maybe my body will ovulate again does anyone know what will happen if the leave it untreated. the physical pain i feel isnt really the baddest part its how i feel as a woman BROKEN. i read that inferitiy is the 3rd reason for divorce. this worries me so much. i am in constant pain and i dont like painkillers (percocet,vicoden) because they make me vomit and feel funny so i find myself popping 6-8 advils a day and in the end it doesn’t relive the pain the best thing i find is a heating pad but i cant have a heating pad all day in school or at work. please pray for me as i will pray for you as well :) sincerly lauren g


Name: Ann
Email: annthedolphin@hotmail.com
Location: New Zealand
Date: March 2008

ALL I CAN SAY IS WOW. I HONESTLY DIDNT KNOW THERE WERE SO MANY PPL WITH IT. I WAS DIAGNOSED BOUT 6 MTHS AGO, BUT I HATE IT ALREADY IV BEEN TO MT DOCTOR MANY TIMES BUT HE NO LONGER LISTENS JUST PRESCRIBES PILLS AND DONT TEL ME WOT THE ARE OR WOT THEYRE FOR. HES PUT ME ON BIRTH CONTROL WHICH I TOLD HI, I DIDNT WANT IT, AND COZ HES MY DOCTOR I REALLY DIDNT WANT TO TELL HIM THAT IM WANTIN AB BABY, BEING A 20YR OLD WITH THIS IS NOT FUN AT ALL I NO LONGER GO OUT CLUBBING WITH WORK MATES. AND MY MUM SAYS SHE TRYING TO HELP BUT COZ SHE DONT KNOW NETHING BOUT IT SHE NOT HELPING AT ALL IF ANYTHING SHE BEIN MORE OF A PAIN THAN THE ENDO. COZ IM ON A LOW WAGE AT WORK THE DOCTOR WONT EVEN CONSIDER ME GOIND PRIVATE FOR THE OP HE WONT EVEN TELL ME HOW MUCH, OUR HOSPITAL DUZ MOST THINGS FREE, ITS MY 2ND HOME LATELY. I JUST WANT IT SORTED OUT CAN ANYONE FROM NZ HELP ME I JUST WANT SOMEONE KIVING WITH THIS TO TALK TO SO THAT IM NOT ALONE


Name: Melissa
Email: malissakearney@hotmail.com
Location: Australia
Date: March 2009

Well my story starts at the age of 14! When I was 14 I had this awful period, the pain was soooo bad my mum took me to the hospital. I actually then suffered urinary retention (which we later learned was just a response to the pain). Since then Every second period seems to be really bad! I have been in an ambulance so many times I have lost count! I have had the surgery where they burn off the endometriosis twice, as well as a curett and tried all sorts of medications. The best thing I found was the mirena. It made the painful periods alot less intense, and found myself rarely needing to go to a hospital. Pregnancy is a HUGE issue for me. I have miscarried 3 times but have had a successful pregnancy (my daughter is now 16months). We are about to start trying again. This makes me nervous... I don't know how I will go if I lose another child! I think the best advice I can offer with people suffering this disease (having suffered it for 8 years of my 22, is not to get yourself down over it. If you are stressed or tense it seems to make matters worse! Take each day as it comes! Make sure you are properly diagnosed; before I was I had alot of issues with doctors thinking I was drug seeking, even though I would only be in hospital every 8 weeks at worst! There are treatments out there, and the treatments work differently for the individual! So talk to your doctor about it and find out what is best for you! For those of you trying to fall pregnant, I don't know how much advice I can offer. Only that perhaps try getting a curett every couple of years, it is how I fell pregnant with my first and only daughter! Don't stress over it, take it as it comes. If it is meant to be, then it will happen! cheers Mel


Name: Amanda Endo
Email: mysteriousdragon2003@yahoo.com
Location: United States
Date: April 2009

hello, my story is a little different. I am 26 and only just started birth control 10 months ago. Two-Three month after i started NuvaRing my hair started fallen out very badly and i started having very painful intercourse after the first month. I had gone 2 year without intercourse prior to starting on this birth control. I had normal periods scene I was 13, only non normal thing was clots which runs in my family so I didn't think anything from it. After 3 month of NuvaRing I managed to get an appointment with a obgyn who just gave me other birth control Solias. I still had the pain and it got even worse with time 3 months later I had constant pain daily and very bad. I talked to some people I worked with scene I worked in a hospital I was told I might have a bladder infection and I made an appointment with the obgyn at a different clinic I was treated for ?Honeymooner's Syndrome? a month later I was in more pain then before. I was referred the obgyn surgeon after my pap smear and Ultrasound both came back normal. The surgeon was confident it was endo but it could have been a few other things so he did a Diagnostic Laparoscopy were I was diagnosed with server Endo. I had a blocked fallopian tube with a endo cyst and endo in other places just one cyst that I know of. Since the surgery I have stopped having daily pain, pain is now just with intercourse for the most part. I feel like birth control caused my endo I didn't have any pain or bad period tell I started birth control is this normal??? I am not on birth control now and I have had one miscarriage sense my surgery :( !! only being diagnosed with endo for 3 months now and we want to have babies soonish the doctor didn't want to start any kind of treatment. By the sounds of things treatment doesn't sound to effective. The doctor told me the best thing would be to get pregnant as soon as possible ? does it really help lessen endo?? Am I more of a high risk now that I have endo?? Is Endo going to be passed on to my child?? No one else in my family seems to have it.... Why are people not educated on endo?? Feel free to email i have many questions and could use a friend to talk to about this no one close to me has endo so they dont know what i am going though :(


Name: Diana Wolf
Email: dlwolf17@comcast.net
Location: United States
Date: April 2009

Well I guess i would start off by just saying that any other women out there who suffer from this horrible life affecting disease I am suffering with you all..I am 25yrs old and my whole history roots all the way back to when i was about 13 years of age and I am pleased to say aside from the horrible pain and suffering I was blessed to have my baby girl in Oct. of 2006 ..my little Zoe :) anyhow she is about 2yrs old and I’ve had 2 lap. surgeries done in the past and yup have had numerous docs and people tell me to ''suck it up'' ''stop complaining you just have to realize this is what being a mother/woman is all about'' well all of u reading you agree w/me when i would look at them and think to myself....''you would never understand what it is like to be in my shoes.. and u would never be able to cope with this severe pain ever..!!" so ..my opinion to any of u reading this and does not have endo. my advice to them is this BACK OFF!!!! because being a believer of Jesus Christ i know that in this life God only gives what we can handle and i truly stand by that to those of u women who are suffering just remember that u are not alone and whenever i came across a doc. or a person who had such an ignorance and a belittling attitude towards me i just think to myself man u have no clue because ...WE are stronger and just because "certain people" judge us by our outward appearance of "ouch, i cant today, i'm so tired all the time, i need to rest, i'm in alot of pain and it really hurts today, and i just don’t feel good/well,i'm aching all over please let me rest"...and so on.. well to the people who seem to judge us please do all of us a favor before you open your mouth to that woman make sure you have enough knowledge of the Disease itself!! there is just too many woman who suffer from endo and doesn’t get treatment the way they need to we all feel alone sad very tired depressed and yes WE R IN PAIN 24/7 OK AND IF U HAVE ANY REASON TO JUDGE THAT WOMAN YOU ARE WRONG.. WE ARE STRONG BECAUSE WE HAVE DEALT WITH IT LONG BEFORE WE KNEW OF THIS HORRIBLE DISCOVERY THAT OUR INSIDE ORGANS R BEING CONSTANTLY ...YES CONSTANTLY BOTHERED IT IS NOT JUST THE ABDOMAIN IT AFFECTS US ALLTHROUGHOUT OUR BODY AND IT MIGHT NOT HAVE A CURE BUT IT IS SERIOUS BECAUSE IT CAUSES PERMANENT DAMAGE PHISICALLY,AND EMOTIONALLY,AND MENTALY..SO WE HAVE BEEN STRONG ALL OUR LIVES ..IT IS KINDA LIKE...having an annoying tick or something that u start to get used to ,im trying to explain that to the average woman that bears a child and that contraction that she experiences when she knows that the baby is on its way or when normal peoples get horrible gas pains and bloating just picture that feeling as ac constant sharp then dull and after a while u start to get used to it but c here is the thing the pain with endo. suffers it just gets worse and worse and it builds up each month...and im expressing this cause right now to this present day im battling w/the pain and let me just add to the fact yes fact ..that i was supposed to go to the hospital and get induced to have my baby(Zoe) and let me just tell u this ...when i got to the room and the nurse hooked me up to the monitor she looked at me in shock..she had said ..mrs. wolf ummm u r having contractions ..and they are every 5 min. ummmm r u ok? i then smiled and said yes im ok y well she said ummm its just that your contractions r very close and im surprised to see u in no pain she asked are you in pain? well i then looked at her and said this..i have endometriosis and this is nothing ive had worse pains im just used to having pain all my life....well obviously she then said so i dont think we can have u induced so....well that is that so basically my whole point is this before i get even more into what my present days are my last bit of words to the people who are part of my endo. pack i love u all and guess what YOU ALL ROCK !!! and just keep strong and dont let anyone make u think u shouldn’t feel like this way we are allowed and just knowing that we can be more educated with this horrible disease is our tool to get the cure so my suggestion is this start the research even on your own and blow those docs away w/your knowledge cause we can eventually find a cure!!!! now so,,um right now my life is a battle every day and im a hairdresser who has to work standing long periods of time and it just sucks i love my job i love helping people and i love hair but lately ive been feeling like a crippled ive had two lps which i believed i mentioned earlier and my last lap.was done by a wonderful doc his name i will not mention because unfortunately i was told that he has resigned and i just thank him so much im starting to actually cry because he was the only doc that really cared about my condition and i felt awesome after his surgery in 2002 and i just want to thank him ok but i will tell his name because he wrote an awesome book about endo his name is dr.joseph krotec and he wrote the book called "ENDOMETRIOSIS for DUMMIES"...it is awsome book every woman needs this book because the author of this book i trust w/my body ...lol literally he was great in my last surgery he found so much endo when i was in recovery he said to my mom ...."man no wonder she was in so much pain...she is covered all over"...but he cleaned/lasered all of the endo...now i am here 2yrs after have given birth to my daughter Zoe and i know that it is back ..yup it never goes away even hysterectomy doesn’t even make it go away YUP IT IS A MYTH/LIE see endo. is an autoimmune disease therefore however we get it it stays and when and until there is that super cure we are not guaranteed a endo free life so here is me now im just feeling like im sick every day and i ache all over and yes my pelvic area and my lower back is in severe pain all the friggin time and im in the process to find a surgeons who can clean me up and get me to a pain specialist cause ive did it all to the hormonal pill to lupron to now i have the merina in and i just really want to be pain free well at least some pain relief so if there is anyone who can suggest any pain specialist cause im also in the search to see if i may have also fibro or arthritis cause the newest symptom of my wonderful list is pins and needles and i wake up and my hands are completely numb and i look at them and they look like sausages..lol no seriously what the crap i dunno it is just another symptom of this stupid disease or of another disease.. so if any of my girlie girls who are part of "my pack"/who are in suffering please talk to me tell me ure advice if u want to e-mail me my address is dlwolf17@comcast.net i look forward to some girls to just give advice our just vent cause we need too oh yes we do :) thanx -Diana- South Jersey


Name: Catie
Email: 10schicca@lrsd.net
Location: Canada
Date: May 2009

I'm 16 years old, and I think that I have endo. I've been dealing with horrible pain during my period since I was 12 (when I first got it). My doctor thought that it was no big deal and that it would go away on its own. When I was 13, she put me on the pill and told me that that would get rid of the pain. It didn't. I tried so many different kinds of birth control pills that I've lost track of them all, but nothing helped. A year later, she sent me for an ultrasound and that came back "normal". After that, she seemed to get tired of listening to me and my mom insist that there was something wrong. She told us that it kind of sounded like I had endo, but she refused to consider that possibility because I was too young to have it. She said that the pain would eventually go away on its own. We stopped seeing her. When I was 16, I started seeing a new doctor, who was slightly concerned with my symptoms, so se sent me to see a gyno. I hoped that I was finally going to find out what was wrong with me. (meanwhile, I'd been doing some research online, and I became nearly 100% sure that I have endo) When I got in to see the gyno, her assistant told me and my mom that the ultrasound that I got a couple years previously showed that there was something wrong with the dimensions of my ovaries. It was very slight, but she thought that i was something to look into. The gyno didn't seem to think so. She said that my ultrasound looked normal and that all my symptoms were normal. Then, she proscribed Depo-Provera. Those were the worst months of my life. I got moderate-severe headaches every day, horrible acne that spread to my back and chest, severe depression (with suicidal tendencies, which is not like me at all!!), I felt like a drug addict when the medication was wearing off... (and much, much more crappy symptoms). I refused to go back to see that woman. My best friend, Sam, and her parents were worried about me, so her mom got me in to see their doctor (who is AMAZING!!). She sent me in for an ultrasound within the week, which showed that I have cysts on my ovaries (the right more than the left). She's thinking that since I have alot of the symptoms of endo and that I have a family history of the disease, it is very possible that I have it. I'm currently waiting to get in to see the gyno that specializes in endo in my city, but I can't help but worry about my worsening symptoms, how I will be diagnosed and what treatment I cna get. All treatments that I've found cause depression, and since I'm prone to medically induced depression, I'm afraid that I'll have to chose between pain and depression. All this is really wearing me down. I'm not yet 17 and I feel like an old woman; sore, stressed and exhausted. If anyone could give me advice on how to deal, please help!!!! Thanks y'all!!!


Name: Angie Stevenson
Email: astevenson727@yahoo.com
Location: United States
Date: May 2009

I WAS TOLD I HAVE ENDO AND PID A FEW YEARS AGO. I HAD A LAPARSCROPIC AND MY DTR TOOK TONS OF PICS, IN THE PICS THEIR WHERE HOLES EVERY WHERE AND I WAS TANGLED ALL OVER. MY DTR PUT ME ON ALOT A DIFFERENT MEDS AND NOTHING WORKED. I JUST WENT TO A DIFFERENT DTR, BECAUSE I WAS GETTING ALOT WORSE. HORRIBLE BLEEDING,BACK PAIN,SHOOTING PAINS IN MY ANUS AND VARGINA,BAD PELVIC PAIN, IM ALWAYS TIRED ETC. I HAD ANOTHER SURGERY AND THE DTR ONLY LOOKED @ N DRAINED MY CYST AND TOOK PICS OF MY OVARY. AT THAT TIME SHE TOLD ME I DIDNT HAVE ENDO. FROM WHAT I READ ENDO DONT GO AWAY. MY FIRST DTR SAID HE DIDNT WANT TO DO A HYSTERECTOMY BECAUSE OF MY AGE (I WAS 27), BUT I ALREADY HAVE 2 KIDS. I DONT KNOW WHAT TO DO. I KNOW I STILL HAVE IT BECAUSE I KNOW HOW I FEEL FROM THE FIRST TIME AND I FEEL ALOT WORSE. DOES ANYBODY HAVE ANY ADVICE FOR ME