After many years of seriously painful periods, persistent backache, recurrent thrush, non stop loo visits, tummy upsets and all while unsuccessfully trying for a baby I was told it was all related to stress. Even a visit to the hospital A&E after three days of sleep deprivation because of severe cramps and running to the loo every 20 minutes, I was sent home with a shrug of the shoulders.
I eventually told my doctor that I'd report him if he didn't refer me for a proper urgent diagnosis. To cut a long story short, I'm now at home recovering from surgery to remove endometriosis from inside my bladder. A large growth of over 3cm was found inside my bladder filled with old blood - that could explain a lot really. My mom had endometriosis for years and I've only just realised from reading up on the internet that the hormonal medication she has been given to treat her endometriosis after a hysterectomy could explain her terrible mood swings and depression - symptoms that have made life for our family very difficult in the past.
My message is simple: Don't give up - be persistent, and most of all be aware of the side effects of drugs you may be prescribed. I may have to have more surgery and medication, but I'm not going to make the same mistakes of allowing the side effects of the medication to rule my life. Pain is personal, but a bad temper and mood swings which affect other people are not. Just remember, you only have one body and one life. Don't let anyone fob you off! You know your body better than anyone. Wishing everyone, sufferers of endometriosis and their family and friends, well.
I am 30 years old and have been diagnosed with Endometriosis for 8 years. Age 13 I started having cramps so bad that I would go see the nurse in school. The school nurse would tell me to lay down for awhile, then send me back to class in tears. I thought this was normal. I remember right before I ended up diagnosed my husband and I were living at his parent's house while we were going through settlement on our house.
I got my period and cramps and didn't want to be seen crying so I went to our bedroom. I completely passed out as I was trying to walk to the bed. They heard a "Ka-Boom" in the living room and came running in to check on me after not answering their calls to me. As I came to I was crying hysterically and my mother-in-law drugged me up on Nyquil so I could "sleep it off".
The next day I made an appointment with a GYN. My GYN told me he suspected Endometriosis and scheduled me for a Laparoscopy and said he would do laser ablation if it was found to be Endometriosis. I went home and informed my family what the doctor told me and my mother-in-law remarks "Oh, so there really may be something wrong with you." How nice!!
A week later I went for my Laparoscopy and laser surgery as treatment for my endometriosis. At my post op the doctor wanted to put me on Lupron which I refused because it was very expensive and my insurance wouldn't cover it. My GYN asked if my husband and I wanted children and I said yes. So instead of putting me on meds he told me to get pregnant and any remaining Endometriosis would be cured.
Two months after my surgery and my attempts to get pregnant my pain returned. I didn't want to go on hormones because I wanted to have children so I would take pain pills to try and "take the edge off" and continued for a year trying to get pregnant. After a year of no baby making I went to see a fertility specialist. Many, many fertility drugs later and still no children.
Divorce came soon after. Along with divorce came no medical insurance. Years and years of distressing symptoms so bad I couldn't get out of bed, yet alone work. I would see my family doctor who would give me my medications. I couldn't afford to go to another GYN. So I lived like that many years. To present still no insurance, still horrendous symptoms. My new family doc (I moved) has told me to get a hysterectomy. I found an Endometriosis specialist that has agreed to review my records.
I sent my request for my records to be sent and awaiting my review. If all goes well I will be going to GA for Excision surgery. I am very excited at the prospect. If this works then I will not have to get a hysterectomy and may even be able to have children. After 8 years of trying!!! So wish me luck!! God bless all you lovely ladies out there with Endometriosis. Love, Angie
So I was diagnosed with endometriosis about 2 years ago (at age 20), but we've kind of figured that I had it for the last three or four years. I always had very heavy and painful periods, like everyone here. When I got to college, I had my first "episode", which the ER thought was appendicitis (like most of you have been through) and almost took my appendix out.
But my blood tests came back normal and the CT scan and ultrasound showed nothing. They found a little bit of free floating fluid in my abdomen, and with my mom's history of ovarian cysts and endometriosis, they assumed it was a ruptured ovarian cyst.
It put me out for a while though, with a lot of pain from movement (which really hindered my swimming career). So, this happened four times in the next two years, but it was something I could keep ignoring. I would go to the hospital, get all of the tests done, be put on pain medication, and then go home and rest up for a few days before I'd hit the pool again. It's what you've got to do. But when I had three "ruptured ovarian cysts" in 6 months and was too frustrated to go back to the ER again, I knew I had to do something or I'd spend all of my time recovering rather than living.
So I spoke to some of the doctors I know at the Stanford Hospital and they recommended a great minimally invasive surgeon, one of the leaders in endometriosis laparoscopy. He could tell right away that I had endometriosis pretty bad, just from the pain I had during a routine exam. So he scheduled me for a laparoscopy to find out the extent, burn it, and remove the cysts on my ovaries (I had a few that were growing slowly).
The surgery found that I have severe (stage 4) endometriosis and so I'm continuing the birth control to make sure the adhesions and endometriosis don't grow back (I've been on continuous birth control since they diagnosed me), and keeping up with exams. The surgeon is amazing and he wants me to continue coming to him for as long as I live in the area, for everything from annual exams to endometriosis problems.
He wants to make sure that I can have children someday and be there to help me out. I was very blessed to find someone so great, and have connections to some powerful people. So it's been about 8 months since my surgery and, although it was a tough recovery, I'm feeling pretty good now. I have a lot of breakthrough bleeding and spotting all the time because I've been on continuous birth control for a while now, but it's not too bad. I'm thinking about trying the Nuva Ring continuously for b.c. for treatment (because I'm so bad at taking pills everyday). If anyone has tried it, let me know how it is.
I just want to tell everyone out there how important it is to find a doctor that you trust and who is willing to hear you out. The best surgeons out there don't always have the best "bed-side manner", but technical excellence is by far the most important thing in surgery. But find someone who will listen, who has good nurses, and who will treat your body like it is incredibly important.
I had to get a medical retirement from swimming because of a bad back and the endometriosis doesn't really allow for 10 practices a week, but I'm pretty much pain free now and that's just so important. It took me a while to get here, and I went through quite a few doctors before I found the right one, but it was all worth it. I'm sure I'll have some more trouble in the future, and I know it won't be easy to get pregnant, but my surgeon says that if I can't get pregnant naturally, another laparoscopy has proven to increase the chance of pregnancy greatly.
Studies have shown that about 85% of women who failed with IVF at least one time got pregnant soon after having a laparoscopy. There's hope out there, and don't lose all faith. The worst thing you can do is give up on life. Get out of bed, exercise, breathe in and out, and try to remember the good things you have every day.
I am 18 going on 19 next month and I have endometriosis. I was diagnosed when I was 16. The doctors didn't know what it was until I was 16. I had all of the symptoms when I was 13. Well, I am on the Lupron shot and I HATE it!!! I hate all of the symptoms. I have been on this shot now for 2 years.
It sucks going through menopause at 16! I just want to know if anybody out there knows of anything else that would help me. I have been so sick the past month. I cannot keep ANYTHING down, not even WATER!! I have lost 10 pounds this month and I am still loosing!! I don't know what is wrong with me, but I wish that the doctors would figure it out! I am on a lot of medicine. I am on morphine for my pain, drammine for the morphine (it upsets my stomach), something for my menopause, and I have to take warm baths and use a heating pad EVERY NIGHT just so that I can sleep.
I am in so much agony I can hardly get enough sleep. The most sleep I have gotten lately is about 3 hours at night! I am lucky if I get that. I try to nap during the day when I have time, but I don't have much of that. I am a full time student at Lake Land College and I work part time. In between work, school, and study for all of my test I am going CRAZY! I can't stay up at school or to study and because I am going through menopause I have A LOT of mood swings. I used to be able to control them, but I can't any more.
I also think that my boyfriend is getting tired of me because I am in so much pain all of the time. I just wish that he could understand what I am going through. I try and try to explain to him, but I just don't think that he understands it.
Unlike many of you I never had any pain when I first got my period. I didn't even know when I was going to get it without keeping track on the calendar. No cramps, no nausea, no dizziness, no nothing. Slowly over the years I have started getting symptoms that I just blamed on getting my period and migraines.
I believe that I was in high school when I started feeling symptoms. When I was about 25 or so, I was 3 months late. The OBGYN took blood samples, and the result was that my pituitary gland and my ovaries were not working as a team. He put me on the pills and that took care of the problem. I was on the pill for about 1 year and went off it with no more problems.
I've noticed that with time I get sicker and sicker before my period. I've missed work because of it, and have left early many times. A few months ago I was driving to meet my husband at my parent's house after work and started feeling this terrible pain. I sat on the steps in front of the house, and my husband had to help me up. I just dismissed it and went on with my life. I went to the OBGYN a month after that because we had not been able to conceive after trying for over a year.
I explained to the doctor what was going on and told him about that terrible pain. After some blood work he put me on Clomid as treatment for my endometriosis for 4 months and said that I don't produce enough estrogen.
Still no baby so in I go for a laparoscopy, hysteroscopy and D&C in mid October of 2005. The result was Endometriosis and 1 bad ovary. He cleaned everything out and put me back on Clomid for 3 more months only this time 2 pills a day instead of 1.
Today I start my last month of pills, and I've decided that if I don't get pregnant this month I will concentrate on paying off my $2500.00 that I owe from the surgery and give up on the baby for now. I'm very depressed about the whole thing.
I'll be 32 years old this month and my dream has always been to be a mommy. It looks like its not going to happen and I've been crying everyday about it. I just had my period accompanied with diarrhoea and saw blood in my stool. I had never noticed that before. This month was worse than previous months and I'm afraid that the surgery may have made things worse. The OBGYN didn't give me anything for the Endometriosis, he's just focused on me getting pregnant and is not treating me for Endometriosis. What should I do?
I'm so depressed right now, and hate all the doctors that I've gone to for so many years with my symptoms who only shrugged me off and said that I was fine. How could I have been fine with all the dizzy spells, nausea, diarrhoea and vomiting and everything else that I felt. I feel that they are to blame that they didn't diagnose it sooner, before my ovary was ruined. They even started to make me feel like I was crazy. I got the feeling that they thought I was making all this up, and that it was all in my head.
I don't feel like a real woman now and feel that my husband deserves a real woman that can give him a child. He's been wonderful about all this, but I know he want's a child as much as I do. We considered adoption and realize it's out of the question because the expense of adopting a child is so great. I've lost all hope and wish to die. I keep telling myself that I can't let this beat me, but the disappointment of not having a child is greater.
I'm 21 years old, and last November had to have a hysterectomy. All my life I always dreamed of giving birth to my OWN children. I was robbed that right from Endometriosis. My obgyn did not really want to perform the hysterectomy-I was too young, but agreed it was my only option left-Severe Endometriosis. Prior to the big surgery, I had gone through 3 surgeries (laparoscopy) in less than a year, so much to the point where my body was getting used to the aesthetic (my last laparoscopy, I had to have 3 times the normal amount) and my body was unfortunately getting used to the pain medicines.
At one point I was prescribed to ingest 4 times the normal dose of Hydrocodone. It's still hard to get over, and even after the hysterectomy I am currently experiencing pain with symptoms linking to endometriosis. I had my ovaries removed, and due to the severity of my condition, I am ordered to take NO hormone therapy until November 2006.
I am confused as to why I am experiencing this pain, but will call my doctor after President's day, he told me there was a tiny possibility to come back, but could it in my case?? I'm scared, and sick of this, my life has been robbed enough...my studies have suffered, personal relationships, my outlook on life, I've been currently diagnosed with severe depression, and I'm sick of doctors thinking I'm only there "for the medicine" and I absolutely despise pill poppers with no medical reason to.
I believe the pill addicts are to blame for people who don't get help for pain, that truly need it!
Date: Feb 2006
I started having this bad ache in my lower right abdomen when I was 17. I figured it just had to do with my period, so I blew it off. It eventually got worse, unbearable. Over the past 4 years, I have been to the ER too many times to count. I'd tell the doctors that my lower right side/abdomen hurt.
Of course they thought it was my appendix. I had several CT scans, ultrasounds, etc. They never found anything, so they pawned me off onto a Gynaecologist. The lady was a wench. She said, "Allison, sometimes women just have abdominal pain. It's part of being a woman." She did this as she gave me my first pelvic exam. I was not sexually active at the time, but she decided to put me on birth control as treatment to see if it would help. It did not, even over time.
I was finally scheduled for a Colonoscopy my senior year of HS. Talk about hell. I lost 10 lbs (literally) in 3 days. Of course they found nothing. I had an Upper GI about a year ago. So in the past 4 years, I've had literally every test possible with no luck. The symptoms would keep me home from school, from work, from seeing friends and boyfriends. An absolute living hell.
SO FINALLY, a few weeks ago, I got into a new gyno. He was very concerned and decided to do Laparoscopic surgery. Come to find out, I have Endometriosis and have since I was about 10 or 11. I didn't even start my period until I was almost 14! I've started on a new birth control pill and I won't have periods any more. But so far, I feel the same. I'm still living this hell, and it's ruining my life.
Hello I'm Jess I’m 20 years old and was diagnosed with endometriosis in November last year when I had a laparoscopy operation. Only 3 months later and my endometriosis has returned with a vengeance!! I also have a bad heart so it is dangerous for me to be put under aesthetic, so making the operation even more dangerous!
I am due to see my doc this thurs to see what I can do now, although I fear I will have to have another operation which I am not happy to have as I had very bad sickness when I came round from the last operation ! Also it has taken me a while to recover and now its back! I personally feel like it would be best for me to have a hysterectomy now asap!
Obviously I'd like a child first so this is something I will have to consider as soon as I have a supportive partner who fully understands and will always stand by me thank god! At the moment I'm in a bit of a mess as I am having many days off work due to the pain I'm in, and also my whole life is being affected !
Hello, I would like to add my story too. Apparently many women are suffering thru this disease yet there is no way of finding WHY and how this disease happens to take place. Well, I am 30 yrs old and my problem started basically 5 yrs back. I have always have irregular periods but pain wasn't really an issue, but 5 yrs back my symptoms started getting worse to point where I couldn't get up and take more than 2 steps.
I was having symptoms of continuous cramping, extremely heavy bleeding that will never stop, extreme discomfort and pain whenever I had intercourse to the point where it felt like somebody was stabbing me and it was just HORRIBLE!!! For over 6 months I bled and my doctor put me on 11 different oral contraceptives as treatment, then she gave me some medicine to stop bleeding which didn't do anything. She also put me on Lupron, depo provera shots didn't do anything except to make me so irritable and moody and stressful that I just couldn't take it.
Finally I just told her to cut open my stomach and see what’s wrong. She did a Laparoscopy and I was diagnosed at that point with endometriosis, and after surgery I was actually believe it or not back to normal. The doctor told me that I might have conceiving problem so I said that's ok since I am really not even planning to have kids any ways at that point.
So she basically put me on depo shots to suppress my endometriosis again and I was fine with that, amazingly one day I find out I was pregnant even though I was on shots and I didn't know I was pregnant until I was like 2 months pregnant. Well I had a beautiful daughter and right after 6 weeks of having my baby my bleeding came back and same pain and torture I went thru.
Same laparoscopy procedure yet again and this time it didn't help me neither did the shots, and then I was also diagnosed with ADENOMYOSIS AND ENDOMETRIOSIS which is basically similar disease but they both could cause bleeding, pain. Finally, my doctor told me I am either going to have to go through menopause or get a hysterectomy, and that devastated me because I want one more kid.
So I decided to get a 2nd opinion and my 2nd doctor told me because I have both Adenomyosis and endometriosis the only definite fix to my problem is HYSTERECTOMY.
So at the end I would like to say to each and every one of you that maybe you might want to discuss with your doctor if you might have ADENOMYOSIS too?? If so they might be different alternative and approach for treatment.
I have had Endometriosis for ten years but was not diagnosed until 3yrs ago. Endometriosis first presented itself when I was about 16yrs. I started to experience quite debilitating pain symptoms at all times of the month, sometimes so severe that I couldn't walk and would have to be taken to a medical centre for review.
The pain was far more significant than the period pain my school peers appeared to suffer - and this is when I first knew something was wrong. From here, were several years of visits to all types of physicians; all of which informed me that there was nothing wrong with me, one of which even suggested that I was a hypochondriac and that it was all in my head?
I was referred to a psychologist, had numerous ultrasounds and even a colonoscopy all of which naturally failed to diagnose the real problem. Since my diagnosis of endometriosis 3 yrs ago, I have had three operative laparoscopies, with my last one on 24 Feb 06. I am a fairly severe sufferer with recurrent endometriosis.
I have experienced many days of not being able to walk, though this seems to have receded somewhat since my first laparoscopy. I regularly take medication, and experience nearly all of the symptoms assigned to endometriosis - Dysmenorrhoea, Dyspareunia, Bloating, Lower Back Pain, Ovulation Pain, Tender abdomen to touch, Pain with full bladder, Necessity to empty the bladder more than once during the night, Fatigue, Heavy bleeding, clotting & prolonged bleeding, painful bowel motions, frequent urination and the lovely moodiness.
I am very fortunate to have an understanding partner who supports me through all of this. Like may sufferers I often feel guilty - I think this is because: 1. I can walk, see and hear, I live in a safe and wealthy country and am not dying from a terminal illness and, therefore, should not complain about my symptoms; and 2. Because some people who have had, or, have known symptom free sufferers may sometimes have a distorted perception of the disease, presuming that the illness must be similar for all, or, that the severe sufferers must be embellishing their symptoms.
I was also recently informed that I have polycystic ovary syndrome and am also to be tested for Irritable Bowel Syndrome. Interestingly, I found some information this week that indicated that Endometriosis often presents with other illnesses, one of which was called Interstitial Cystitis - a relatively unknown condition.
I have experienced an ongoing complaint pain with a full bladder and tender abdomen and am thinking about asking my gynae to look more into this condition as the pain resides even after my recent laparoscopy. Finally, I currently have two friends who have been undergoing IVF as a result of endometriosis, it is a very difficult process.
One has just conceived on what was to be her last attempt at IVF. The other continues with hope..... this is not only heart-breaking but finding the funds to keep trying after having already spent so much on years of hormone treatment, gynae visits and surgeries is not always easy. Well, I was not aware before today that alternative therapies could alleviate endometriosis symptoms for some people. I have purchased the book and hope to be able to provide you with a more positive story in a few months. Best Wishes to all - be strong & don't give up!!!
Stories Page 6