I started getting symptoms when I first got my period at 12. The doctors kept telling me it was nothing and sending me for ultra-sounds and telling me nothing has showed up. My mother was getting frustrated and called her mother to talk about it; her mother told her that my aunty (mums sister) had the same kind of symptoms as me when she was younger. So my mother called my aunty to see what she could do and my aunty said that those were the symptoms she had when she had endometriosis and she told my mum to take me back to the doctor and check.
I went back to the doctor a couple of days after that and we told the doctor but the doctor said I am too young to get endometriosis (which my mother knew was wrong as my aunty got it when she was 12 as well). So my mum took me home and we just let it go and I had to deal with the pain. Then when I was 17 about 4 months off 18 I was helping my mum clean out her wardrobe and look for her old x-rays. In the meantime I found one of my old ultrasounds and thought 'ooh how interesting' and checked it out.
As I took out the scans a page fell out with the results of my ultrasound on it and I started to read through it and on the results it said that I could have fluid on my uterus or endometriosis. I was quite shocked and upset by the discovery as my doctors had not bothered to check up on this. I showed my mum and once again headed back to the doctors in hope of finally getting through to them. My doctor said that she still thinks I am too young for endometriosis but because I am still getting pains (worse than before) and now other symptoms, she said she will refer me to a gynaecologist for treatment.
A couple months after I finally got in to see a Gyno and even the Gyno said I was too young to get endometriosis and she sent me home to monitor my period and come back in a few months. Not long after I was back with symptoms of increasing pain and larger blood clots and a few other symptoms, so she said she will send me for an exploratory laparoscopy to ease my mind as she still didn't think I had it.
A couple months later I finally got in for my laparoscopy because I was on a large waiting list and found out afterwards that I did have endometriosis, so I then set up a follow up appointment with my Gyno and she said she will send me in for an operative laparoscopy to have the endometriosis removed, but once again I would be on a long waiting list so in the meantime she put me on the pill to regulate my period and help the pain although it didn't really help.
A few months before I turned 19 I finally went in for my operation which was the worst thing ever: I was told that it will be a 45 min operation and I will be able to go home after it. Unfortunately this didn't happen. I went in at 12 or 1 pm and came out at 7 pm. My mother was so upset as she didn't know what was happening and when she finally saw me I was blotchy and crying.
The doctors and nurses were very secretive and wouldn't tell us what was going on but told me I would have to stay the night. Then the next day I asked to leave but they didn't allow me and were still secretive until one nurse was nice enough to tell us what was going on, even though we weren't suppose to know. It turned out after the operation my heart rate wasn't right and I had a blood clot and my bladder was leaking.
The next day I asked to leave again and they said only if my fluids stay up and I go to the toilet a couple of times before I leave (which I did) and they finally let me out. A couple of days later I found bruising on my body from the front of my stomach to right down between my legs on my vagina. I was black, I was devastated and could hardly breath. I tried to gain my breath to tell my mum but it took a while and once I had shown her she called my Gyno straight away, who told me to come in straight away.
I went in to see her and she told me the bruising is most likely from the blood clot and that it should go away soon. Over the weeks it faded and finally had gone. It was the hardest thing I have ever been through. I still get pains and I get check ups every 2 years. I went for my last check up last year and it hadn't grown back but I have scarring in my uterus and on my ovaries and I am hoping that none of this has affected my chance at having children, as it is the one thing in this world I do know I want.
So it has been nice to relate to other women around the world on here and hear there success stories of getting pregnant. Thank you for the hope.
My Endometriosis story is like most of you on here, I am 28 and married. I have been officially diagnosed with endometriosis since 2009. I suspect I have had endometriosis when I started getting migraines in middle school. I had not started my period but my change in hormones brought on migraines very badly for a few years between the times I was 10-13 years old.
I got my period very late. I was almost 18 at the time and from that moment on I have always been in extreme agony. I had complained to my gynaecologist about the symptoms in 2005 when I was 23, she stated nonchalantly that there is only one way to find out what the problem was by doing surgery, but she basically blew me off, with the whole attitude that everyone has menstrual cramps, and you should just deal with it, kind of attitude.
I then moved to Dallas in 2006 and decided to get on the three month birth control pill called Seasonique from the patch Ortho Evra (which by the way patch worked great for me for 6 years). I approached my new gynaecologist in Texas and explained the symptoms I had, which I thought were to be PMDD and he decided to put me on YAZ, a low hormone birth control specifically for PMDD.
I cannot stress this enough - do NOT take Yaz ever if you have endometriosis or any low hormone birth control pills. I became a complete wreck without enough estrogen, crying all the time, suicidal, mood swings, wouldn't get out of bed for days I would work, come home, go to bed, it made me horribly depressed and I hated myself and the world. I looked up YAZ online and realized my story was like a lot of other women out there and I got off that pill right away.
I then met a new friend here in Texas named Jennifer through a mutual friend. She and I swapped stories and she explained her diagnosis was Endometriosis. Jennifer’s story of symptoms was extremely similar to mine, and what scared me the most is that I was not told in 2005 is that if you do not treat endometriosis it advances and gets worse, especially when you get off birth control altogether.
My symptoms of endometriosis are as follows; I have a period that only lasts about 4 days max, heavy bleeding only on the first day and the first day is like hell!! My pain radiates through my abdomen out towards my lower back, my lower back feels like a 50 lb weight has been put right in there and then kicked a few times for good measure and it feels like extreme bruising, my legs ache very badly and standing or walking for long periods of time is out of the question.
One of the most serious symptoms began more recent. I began to be extremely tired, no matter how much sleep I got. I would be sitting at my desk on the verge of tears due to my exhaustion. I was also very sensitive and had extreme mood swings from the change in hormones where I just want to fight about everything, and then I just wanted to cry. My abdomen swells to an enormous size, and my cramps double me over and I am in the foetal position in bed, or on the couch a few days of my life wasted in pain.
The only medication that helps and sometimes it's only for only an hour or two is Advil Gelcaps. In 2007 to 2008 I had stopped taking any birth control as treatment and my symptoms began, and fatigue began to get worse, and I was scared to go on any more pills since the last one made me so crazy. I then knew just by talking to my girlfriends they did not have pain anywhere near like mine, and talking to someone with endometriosis I knew I had it.
I changed gynaecologists from the one who put me on YAZ, and saw a new gyno (I made it a rule to only see specialists and only doctors who knew about endometriosis and or were endometriosis surgeons). I talked to the doctor and basically forced him to do the laparoscopy for a diagnosis. In Nov of 2009 I had my laparoscopic surgery and guess what they found; I had adhesions on the front and back of my uterus, implants on my bladder and right ovary. When I woke up all I could do was cry because I knew it and now the scary truth was a reality.
Right now I am on the ortho-evra patch to keep the endometriosis from advancing. My husband and I are going to go off the birth control early next year to try and get pregnant. My pain symptoms are 50% better than they used to be, my back pain is minimal, and I have used Arnica gel on my abdomen and back when it gets bad and that has helped a lot. My cramps can get pretty brutal still.
My emotional symptoms have greatly improved. I am still weepy and sensitive but I am not as irritable, or angry as I used to be, and I am blessed to have a really supportive husband who understands that the hormonal changes are not something I can help. I have also paid more attention to my diet and trying not to eat too much of anything that is on the bad list on the endometriosis diet. I also take a daily supplement of Selenium. I basically run my health, now I do all my research and I run endometriosis, endometriosis doesn't run me.
I want to say this to everyone out there who thinks they have endometriosis, listen to your gut and talk to other women if your pain is not comparable, and that tiny voice in your head says there's something wrong, there probably is. I have previously submitted my endometriosis story but noticed after it was posted it had a ton of errors, here is my revised story.
Trinidad and Tobago
I was officially diagnosed with Endometriosis August 2010, after a Diagnostic laparoscopy. I have, however been having extreme lower abdomen cramps since I started my period when I was 9 years old. I have the chronic pelvic cramps, the constant bleeding, and this disease like depression that is as bad as the endometriosis itself.
More than 10 ultrasounds and 1 biopsy. I get infected easily and practically live on antibiotics, my hormone levels are topsy turvy and the physical changes to my body ( the breasts swelling, aureola peeling, the bloated stomach and the trench like gap from the post-surgery displacement in the lower abdomen).
The only advice I can give to anyone reading this is to hang in there, prayer helps and find someone or some persons to share your burden with, because a burden shared is a burden halved. God Bless
Well I'm not sure where to begin really, My name is Sam and I am 28 married with 3 kids aged 11,6 & 2 years and I have never done this before so bare with me please lol! I have suffered with quite terrible symptoms for the past 2 years or so. After the birth of my son, back pain, pelvic pain, constipation or the other random vomiting, mood swings, hot flushes, anxiety, depression & tiredness!
After numerous trips back and forth to the doctors I was told I had anxiety so was given beata blockers & diazepam. Then I was told its IBS so was given buscopan for cramps and spasms etc... still nothing. So in July last year 2010 I went for a routine smear and explained once again to the doctor how I am sick of feeling the way I do - pain on intercourse, hot flushes mood swings, feeling sick, severe cramps on periods like you wouldn't believe (unless you suffer with endometriosis too), so full bloods taken and all came back fine, & then this is where things got worse!
After having my smear test done, 4 days later I was in complete AGONY and my husband took me up to A&E to be told I must have PID (pelvic inflammatory disease ) or an std (at which I was mortified being as I'm married and my husband is with me EVERYDAY as we work from home together).
So they controlled my pain, took loads of swabs and sent me home with boxes of cocodamol & very strong high doses of antibiotics without a diagnosis, just the presumption I had PID and was told my results would be back within a week.
So a week passes by and I'm STILL in agony... call the doctors for results of swabs ..expecting to hear I had this so called PID as the doctor at hospital had stated it most possibly was... RESULTS ALL CLEAR!! But was advised to continue with my antibiotics until I had completed the course even though I had NO infection of any sort!
So ok then, random maybe it was, something else no idea and carried on with my day to day life. 2 weeks later, yup you guessed it, there I was yet again doubled over pains in my right side of my pelvic area, so off to A&E yet again, arrived at the hospital to explain the SAME symptoms yet again, this time to be told maybe you have a cyst ... stayed in over night with medication to go for scans the next day.
Scans showed NO cysts, nothing, no infection, no abnormality so once again more medication and sent back home very upset and disappointed and frustrated at this point. So back home I went again, then I have a letter arrive in the post saying my smear was abnormal & that I had cn3 and needed to have it removed, I thought ahh, well maybe all this pain is related to this and once I have had it treated things will begin to calm down.
How wrong was I! My appointment was made for November 2010, at this point we are only in the start of August, so yet again the symptoms continued and just got worse leaving me in tears almost all the time everyday.
So I decided to take a test & yup there it was, the 2 blue lines telling me I was pregnant. My stomach knotted up and off I went to the doctors, to be told that after all the medication I’d been given the past month that it would not be advised to continue my pregnancy as the baby could be severely damaged.
My heart sank and I just felt numb... so the day after my birthday I had to go for a termination which goes against everything I stand for, and I haven’t dealt with it all very well since then at all and it gets worse further down the story!!!
This broke my heart as I would be due any time now.( In November 2010 I had surgery to my cervix, LETTZ treatment to remove the pre cancerous cells all done fine, minus the fact that the consultant had managed to cut my vaginal wall!!! So that was that. I came home sore and bruised as expected and all seemed ok for the first week or so. Then yup yet again here came all the pains, so I just put up with it taking tablets everyday, crying most days, moody horrible to live with to be honest... I carried on like this until March this year 2011 when the symptoms became sooo terribly bad I honestly thought I was dying of some nasty horrid illness.
I was in AGONY for days, so back to the doctor I went in tears and this time I saw a different doctor and had to tell her that I wasn't going to put up with it any more, refer me to a consultant privately as I had had enough and didn't care what it cost to make me me again!
She was lovely and took the time to go through lots of things with me and referred me asap without needing to go private. 2 days later my appointment came through, I went to the hospital to see my first gyne consultant. He spent around 10 minutes with me and straight away said you have endometriosis and I'd be surprised if it wasn't! He also told me how the other hospital should not have kept giving me high does of antibiotics like they did without a diagnoses first, which if they hadn't of done I would of been able to keep our baby which broke my heart so much :(
I was SO ANGRY AND UPSET with the other hospital as I feel I was fobbed off and I'm the one who paid dearly for it!!!
I was booked in for surgery within a week and a half of seeing him for a laparoscopy for treatment, which I had done on the 14th March 2011. All went well and I had LOADS of endometriosis throughout my pelvic area and the pain was horrid for 2 days, and then I started to feel better and finally thought YES it's over, silly silly me!!
Yesterday Monday 21st March 2011 I woke up, was doing breakfast etc and there it was that HORRID pain I used to get when I need a bowel movement when on my cycle. I just doubled over and broke down in tears, and this morning I am SO SAD & fed up and frustrated as I thought this would be the end for a while.
I was diagnosed with Endometriosis when I was 16. I first started my period at 11, but didn't start having excruciating cramps until I was 15. At that point I blacked out from my first painful episode and was taken to the hospital ER where I was diagnosed with a UTI. I went to the ER every month after that (of course not realizing that it was my period.
Eventually I had a follow-up with my Paediatrician 3 days after an ER visit. She called the ER for the culture on my urine sample. It was negative for bacteria - meaning there was no UTI or bladder infection. So she referred me to a OBGYN. I had several tests done with the OBGYN. They pulled my mother out of the room on several occasions to ask if I was sexually active or not. Which I wasn't at 15. I had two ultrasounds- an inter-vaginal (?) and an outside one. Neither yielded any results. Then I had the laparoscopy which finally diagnosed endometriosis.
We tried several different BC which none of them worked. Finally, I found YAZ and it worked for several years. I mean little, no symptoms of my period at all (very mild cramping- but bloating, acne, mood swings- all of that was gone). Unfortunately around the age 22 (or last year) My BC stopped working very well. I was beginning to have BAD cramps again and so I went to see a different doctor (because I was in a different city- in college).
She shrugged me off basically. I waited 45 minutes to see her. When I saw her she did a pap (which I don't know about you guys, but it is EXTREMELY painful for me to have one of those), and prescribed me an estrogen based BC. Which was weird because she told me she had endometriosis too- and she should know better than to prescribe an estrogen based pill!! Then I asked for something for the pain and she told me to get on a dosing schedule of OTC Advil 2-3 days before my period - and that it should reduce the inflammation enough that I wouldn't have such bad cramps. WRONG.
Well first of all - the new pill seemed to make things worse. The cramps got worse - they lasted longer. The advil hardly made a dent in what was going on. I was getting so sick that the blood from my face was visibly drained and I was pale as a ghost. I was having chills, vomiting, and obviously excruciating pain! But she kept telling me - Oh it will work itself out in a few months.
So I waited and kept on doing what she told me to. Eventually I moved back home to Memphis and started seeing the doctor I had seen before starting school. She immediately took me off of the new BC and put me back on Yaz for treatment since it was what had worked in the past. Then she gave me a prescription for RX strength Advil. That didn't work so she prescribed me Ponstel- well that was $70 for 30 pills- and my parents offered to pay for it and I tried it - but it didn't work either. So I told her, "You know, I'm not going to be broke, paying $70 for 30 pills that are as effective as 2 advil are on this pain." So finally she prescribed me darvocet- which worked a little and made a slight dent in the pain.
But hey- it worked better than the advil so I took it! Then Darvocet was taken off the market so she prescribed me 5 mg/ 500 lortab. I know it is addictive and not the best treatment - but JEEZ, what a relief. I actually didn't miss work that month! However, after she prescribed the lortab, I moved to Missouri with my boyfriend who got an ARCH job here. When I called in for a refill (she gave me 20 and I made them last for THREE MONTHS) she said it was a heavy duty drug and that I would have to come in and have another pap smear before she could re-fill anything like that.
So I made an appointment for a Friday I would be in town visiting family. But my specific doc wasn't in. I had to see another lady. And when she started asking me about my bc and if it was working I said no, I take it for endometriosis and it's not working any more. She said, "Well aren't you taking it for actual birth control too anyways?" and I broke down, cried, and told her "well you know I’m not having that much sex any more because due to the endometriosis I have painful intercourse." She excused herself from the room after saying "sorry to bring up a touchy subject".
Did my pap smear (Which was excruciating) and then prescribed me more of the SAME BC and left. I've had no luck in the Springfield, MO area finding a doctor - and almost think I'm better off. I'm going to be suffering regardless of whether I see a doctor or not because they obviously don't care - and this way I'm just saving money.
This month, though, I had my period on the 1st of March and I just started it again today (the 24th). I'm on my bc and I take it every day - at the same time everyday - but for some reason I started 7 or 8 days early this month.
After reading many stories I thought maybe I can help someone with my endometriosis story. I have stage 4 endometriosis. I had a robotic laparoscopy where they removed endometriosis from my colon and bladder and took out my appendix. It was a huge success. I now have a baby and am almost pain free. I just want to say please go to a doctor that specializes in endometriosis, it makes a huge difference.
My doctor specialized in advanced stages of endometriosis. I had been going to OB doctors for 15 years trying to figure out what was wrong. I sat down with Dr. Desai and within 5 minutes she said I'm 99% sure you have endometriosis. I said what is that? A month later I had robotic laparoscopy and was pregnant in one month after surgery after trying for 10 years.
Canada April 2011
Hi there. I am so thankful to have fallen upon this site. I am going to be 30 years old in 3 days. I wasn't diagnosed with stage 4 endometriosis until I was 20 years old; and after countless trips to the E.R. every month like clock-work; also after being admitted and told by a specialist that it was just another cyst and to go home. I demanded a 2nd and 3rd opinion right there, then a 4th after stating that I was not leaving my room until I saw a specialist that was going to fix me.
He took one look at me (an internal) stated that I had endometriosis and that he was booking an O.R. immediately and to contact my family. When I woke, he said that I had what they called stage 4 endometriosis (explained a little bit to me) put me on 6 months of lupron then said "there's nothing else you can do, you will never have children and you will be taking pain killers for the rest of your life".
I was flabbergasted. He said that this last laparoscopy showed that the lupron may have worked for a little bit but that it came back fully right away.
After countless laparoscopies, miscarriages and 3 x 6 month long lupron treatments, I couldn't take any more. I met a doctor who said my only chance at getting rid of it was to get pregnant and see if I could carry the child. I did, at 24 I had a gorgeous daughter. The downside was after I finished breast-feeding, the symptoms started worse than what it was. I had my left tube removed and that was supposed to help.
I had 4 more miscarriages and an ectopic pregnancy (that nearly took my life, took me from my daughter for 2 weeks being in the hospital). I was in agony all the time, on medication to get through the day and be the best mother I could be to my "miracle child", but had enough.
After going to countless doctors for a hysterectomy, and being told that they would not do it because of my age, I finally found a woman who did it for me. I had a hysterectomy at 28. I was better than I was because I lost about 75% of the pain, for only 5 months.
I started having that unbearable pain but this time all up my right side and on the top of my abdomen. They removed, both tubes, left ovary, cervix and uterus, but now my gallbladder, pancreas, stomach,liver and now as of last week, my right kidney are all swollen and they think there may be endometriosis on these organs, because there is nothing else showing in the countless tests that have been done.
They have been prolonging another laparoscopy because of how many times I have been under, and they want to rule out other things first. Well, as of last week, they also found an endometrioma on my only ovary and it is almost 2cm. I didn't know that could happen after a hysterectomy. Now they want me to wait 4 weeks for another ultrasound to see how much bigger it is. I am floored.
I am scared because I already have endometriosis on my bowels and now if it is on my organs too, they cannot remove it because it is highly dangerous to laser near organs. They can't stop the swelling of the organs, and to top if off I cannot work because of the pain. I vomit when the pain is intense which is about every other day.
Disability will not help me because they are ignorant to what endometriosis is, and now with the swelling of my organs, they want a positive diagnosis before they accept me, which they cannot get until the laparoscopy is done. Why make me wait 4 weeks to see how large the "chocolate cyst" is, before taking it out. They are prolonging the inevitable, and when they remove the blood filled cyst, they can also see what is causing my organs to swell. Everything can be done at once, they can decide what to do next and I can at least get disability for a couple of years until they can treat and hopefully cure me? I don't understand the system.
The doctors, the government not being aware of endometriosis, and people not understanding what it is like to be a mother of a soon to be 6 year old, who is worrying about me all of the time, and who doesn't understand why the doctors can't just "take it out and make you all better mommy". She says she wants to be a surgeon so she can help make mommies all better so they can play with their kids all the time and help their mommies not faint, and be sick all the time".
I feel so helpless, even more so now than I did when I was first diagnosed. I have family that tries to understand and "empathise", but how can they? How can they know what it feels like to not be able to play with your child every second that they ask, or to have their child feel fear when their mother goes in for surgery or when you just want to crawl into a hole when you're in the foetal position in agony all night long, even after having a hysterectomy so young and having to worry about osteoporosis at the age of 35?
If we can all just bring awareness to one woman and help them get it detected at stage 1-3 we can make a difference. Thank you for reading.
Stories Page 40