Mine is such a similar story to all of these but I just had to add mine with hopes that someone will read it and know they too are not alone in this. I read and read until I cannot read these stories anymore, but each time I read, I find great comfort in knowing that I am not alone. For me, my period started 2 wks before my 11th birthday, rather on the young side. They were so heavy for a little girl to have to deal with, and usually lasting 7 days.
I will always remember how bad I used to feel when my teacher would take me aside and tell me I was seeping through my clothes with blood and getting dismissed on a regular basis. This was not due to lack of hygiene, it was just more than a little girl could handle I think at the time.
I went years like this chalking it up to me being the unlucky one, I just get bad periods. As a late teen I went on birth control to use as birth control and nothing else. I stayed on it for several years and did have two children.
With a busy life with 2 children and a job, I just plugged on through these symptoms calling it PMS. Well, as the years went by seeing countless doctors and gyns and numerous visits to the ER, now, after 10-12 years, I was just recently diagnosed with Endometriosis, a fibroid and physiological cysts. The symptoms I experience monthly before a period are debilitating and have ruined my life.
This doctor, the one I saw in June 2 months ago, was the FIRST doctor to acknowledge my pain and diagnosis. Before him, all others just "suspected" I had endometriosis. Oh, I have had my fair share of poor treatment and degrading treatment from doctors, so, when this doctor was sure I had Endometriosis it was a major milestone.
He advised a TLH (Total Laparoscopic Hysterectomy) which I am scheduled to have in September of 2010. But, not so fast. Through some reputable websites including this one, I got some really good advice to seek out an Endometriosis Specialist before I make such a drastic decision and undergo a total hysterectomy. I see the endometriosis specialist on Thursday and I hope he has some alternative treatment ideas to deal with all of this. From reading all of these stories I am very angry today. I don't want to go on lupron and some of those horrible medications.
I like who I am when I'm not in pain and I am mad that this always seems to be the ONLY way to treat this. As if ripping everything out isn't enough, the medical world has to use all these toxic drugs for the treatment for endometriosis. I just thought my story ,of how it has led to things thus far might help out someone in some way.
I will continue to keep an open mind and explore all my options though before I go through a hysterectomy. At least there will never be any regrets because I know that I have explored all options by seeing the specialist.
I will start off by saying that I am blessed to know what is wrong with my body. I say that because for 5 years I tried and tried but to only come to a dead end to conceive and get pregnant. At that time my high school sweetheart and I really wanted a child of our own. We were ready to start our own family. Sadly I could not become pregnant. Which put our relationship to the test. We separated due to his infidelity and conceiving a child with someone else. His response to me was "Well I know it's not me, it's you". And boy did that hurt. We went our separate ways.
I met another man who in turn did the something but the irony in that was it was after I was diagnosed with endometriosis. I found out I had endometriosis and it was so severe that the doctors scheduled me for surgery the following month. I had my left ovary removed. The doctors told me that they had never seen such a sever case of endometriosis so they had no choice but to remove an ovary to help me deal with the pain. I still have my left ovary. Whoopty doo!!! LOL. But I am grateful that I do have at least one.
They told me the only way I could conceive is through IVF. I left that guy alone and just tried to focus on me and my body and always thinking will I ever have a child? Will anyone even want to be with an infertile woman? And then God placed my fiancé in my life. We are both ready to go on this journey together. I am also so glad that I did find this website and I hope that I do get to chat with other people who are going through what I am going through.
This is hard to live with this. I have lost two jobs thus far due to the severe agony which causes me to miss work and do normal day to day activities that some people take for granted. I just want to be able to live without this pain and this emptiness that I feel wondering will I have a baby or not. I will be married soon and I would like to bring a child of my own into the world. I'm 25 yrs old. I have been living with agony for over 10 years, however I didn't get diagnosed with endometriosis until I was 23.
I kept going to the doctors and they would say "It's nothing wrong with you you're too young to have anything wrong with you" But in a blink of an eye from one ER visit my whole life changed. I am up at 2:00 in the morning because of pain that will not allow me to sleep. I find that this is helpful because I am venting and perhaps ranting on and on. If you did thanks you really just brightened up my day so to speak. Again Thank You. Hopeful, Nikeia D. in Pennsylvania
47 year old (mostly) vegan diagnosed with one cyst in Feb. Had increased intake of green veg and added turmeric, nutmeg and cinnamon (not all at same time) so not been bad enough to miss work since first day of March period. Blood test results on Thurs in early August showed might be due to endometriosis. Found out late Thurs night about no wheat, no soy, and applied straight away.
I used to have soy yoghurt with my muesli - switched to oatmilk - and much better. Had already cut down on butties, have now eliminated though I'm ok with fermented bread (black german style bread from health food shop). Can recommend dandelion coffee with nutmeg. Turmeric is very handy to turn cabbage and rice a nice bright yellow rather than brown. Exercise definitely helps - I've done 2.5 km runs (well run a bit walk a bit) since May and have built up to cycling for an hour at a time. Exercising week before period seems to reduce volume of blood which makes easier to cope.
I am 38 years old and have been married 17 years and I noticed a few months after I got married that I started having severe aches during intercourse it was so bad that I started crying. My husband was scared he had done something but I didn't understand at the time what was wrong but it only happened a few times, so I wasn't to worried. I just thought because this was my first time being sexually active that it was just normal at first but then years later it just kept getting worse and more distressing and then I couldn't get pregnant and I got very depressed.
As the years went on the pains just got to where it was so bad that I would have to tell my husband that I couldn't take it, so I would go to he restroom and throw up and have a bowel movement and the pain would eventually go away. I finally went to my obgyn and she said that it was endometriosis and she gave me a pamphlet about it. I looked it up and realized that my symptoms where the same! Over the past year it has gotten worse and the dr had sent me to a infertility dr to help so I could try to get pregnant after the surgery. I was scheduled to have it done but because of other health problems, my husband needed surgery, so I put it off and that was 3 years ago.
At this point I would rather just have a hysterectomy because I haven't gotten pregnant in 17 years. I am just ready for the distress to stop, and just recently it has really affected my bowels, it is so agonising I can't take it!
A positive message that reflects the ideas of healing from endometriosis from Endo-resolved...
Like many of you I have had very similar experiences from a young age (painful periods since I was 13, profuse bleeding, hypoglycaemia...) but it was just within the last year that I knew something was truly serious. It became obvious when I was lying face down on the floor from severe cramps, unable to move. I was begging my mate to take me to the hospital. After that ordeal I opted to see what turned out to be a string of "ill-informed" doctors.
I finally found a fantastic male doctor that was very intuitive and compassionate. He identified my disorder through laparoscopic surgery. Once he confirmed that it was endometriosis (which he also said was the worst he had seen in 25 years,) it was a mixture of relief, fear, depression, pain and confusion. This brings me to now - I am in limbo because I do have the option to have a surgery "cut out" my lesions, but as many of you have stated it can and does return, but the pain is debilitating some days so I'm torn.
Instead of just resorting to surgery immediately, I am on a quest to understand the core of the issue so I can remedy it. Doing some research I have discovered plenty of information; some useful and some conflicting. It seems to come down to 1,000+ year old primitive, instinctive knowledge. Basically if it doesn't feel good for you, it isn't - use that in all situations. If an option on a medicine, or a doctor feels "off" or you feel heaviness and hesitation on the decision, the answer is no.
You have a right to choose what goes into your body, we often forget that dealing with doctors while in distress and pain. Most times, only we know what is best for us. For example, our food sources and all the toxic chemical pesticides and hormones that are legally used on them that we in turn ingest. Does that seem in our best interest given by an authoritative figure?
It is no surprise that major ailments such as endometriosis, cancers and autism are on the rise. Understanding the link between endometriosis (an auto-immune disorder similar to lupus) and environmental issues are very important. Since you are what you eat, breath and drink, if it is tainted your body will have a reaction down to a cellular level.
I will say genetics has a definite role in this as well, so long as we realize that we do have a decision in how we tend to our bodies despite the cards we are dealt. I've noticed with me that hypoglycaemia triggers my endometriosis pain, but if I eat certain foods, like soy, to balance out my sugar and proteins, I feel worse since soy contains estrogen. Being that endometriosis lives on estrogen, and that soy is in 90% of all our foods to some degree, it really helps to know what you are ingesting.
Even better for endometriosis is to only ingest food the way it is in nature, and if you can't identify it or has more then 3 ingredients, then it is not really food. I personally can detect almost immediately if something feels like it will have adverse effects on my system, be it food or medicine.
"Let food be thy medicine, thy medicine shall be thy food."- Hippocrates. Hypoglycaemia, anaemia, fibromyalgia, Candida, migraines and others, are symptoms to a larger issue and they all are linked. See it as gears on a clock how they interlock within each other, then it will make more sense. I highly recommend reviewing your experiences in life starting from childhood and connecting the dots. These moments may have some significance to your healing since you don't know where your going until you know where you've been.
Also keep positive, the brain releases chemicals either good or bad depending on what we focus our minds on. I know personally with endometriosis how depression can destroy, but I also know that being positive is more healthy for your cells, pain and overall well being. Keep the mind and body connection even if it feels as if that may not be possible. Reading Carl Jung always helps me keep the balance. Truly, research yourself after all KNOWLEDGE IS POWER. The more you know for yourself the more you can take care of yourself and in turn others.
I was reading everyone's story online today for the most part we have the same story. I will give you a short version of mine, I am 30 years old. I have been on BC pills, Depo Shot, 2 DNC's, & 2 weeks of Iron Infusions(Hospital) and now they want to put me on "Lupron Depot Hormone" Injections. I would love to have a baby, but I just don't feel like its NOT an option. At this point I am seriously thinking about a Hysterectomy. I am tired of dealing with the pelvic pain, lower beck pain, heavy flowing, & I am tired/weak everyday NO energy at all. I am really concerned about the Lupron and the side effects.
My name is Ashley Hesla and I am 16 years old and was recently diagnosed with endometriosis. It all started with stomach cramps so I went to the Dr they thought I had an ulcer so gave me medicine for it and it didn't work, then a lump appeared like where a hernia would appear so I went to see a specialist and he said nope not a hernia. Then my doctor referred me to an ob/gyn, they asked me about all my symptoms and told me few things it might be and endometriosis was one of them.
Then they decided to give me an ultrasound and found some fluid behind my uterus which was also a a sign of endometriosis. After that they wanted to get a sample of that fluid so they decided to give me laparoscopic surgery to see if I had endometriosis. So the day eventually came, went to surgery and they found 4 cysts on my ovaries and also that I did have endometriosis and the fluid behind my uterus was actually a really big cyst that was on the ovary. But it was so big that it was also kind of behind the uterus.
The doctors found it early and they said I have a high percentage of having kids and that there are some treatments for me and I'm glad I just found this early because I heard most women don't find it until they are like 21 or around that age. Well that's my story hope you enjoy
I am just recovering from a laparoscopy done 5 days ago, still very sore and feeling rather emotional and lost. I really should explain how my journey has been. I got my period at 11 years old, extremely painful and heavy cycles which would send me on days off school, unable to move from my bed. As years went on things were much the same.
My husband and I tried to have a baby, that took 2 years and I finally got pregnant, we were very surprised when our baby was 6 months old we fell pregnant again, we thought it was going to be something that was going to take forever again. I had unexplained infertility. My symptoms seemed to be getting worse after our second daughter came along. Screaming from the toilet as I tried to pass urine and stools, I was even rushed to hospital when our second baby was 3 months old. I was diagnosed with a "womb infection" and what the doctors thought was inflammatory bowel syndrome.
6 months later I had a laparoscopy, old endometriosis scaring was seen. Nothing removed. I had chronic pain and went onto a mini pill and then came off April of this year. The pain started again- I had unexplained bruising on my stomach area which the doctors couldn’t tell me why. It felt like my c-section scar was pulling. No one could tell me what it was, that perhaps it was my muscles pulling. My left ovary had been sore for some time, but a month ago it got beyond it. I ended up at after hours and then having a scan. 2 "complex" cysts where seen on the scan.
I booked straight into see a private specialist and then booked in for a laparoscopy. 4.5 hours I was in surgery, IV endometriosis. My left ovary was twisted, stretched and enlarged up into my stomach area! (Where I had been having unexplained bruising!) It was attached to my old c-section scar. I've had all my endometriosis removed. Hoping for a better time. Now to decide what to do about having the rest of our family~!!
I was about to turn 12 when this story begins and the denial begins, the only place the pain could not reach me. I awoke to abdominal cramps, mom called the doctor, who said to give me an enema. She did. It relieve some of the pressure and I went back to bed, then things are a bit fuzzy. I apparently got an infection.
I was put on several different antibiotic most of which I had an allergic reaction to, one of the doctors decided he needed to do a pelvic to see if it was a ruptured ovarian cyst. However, nobody explained to me what a pelvic exam was and this doctor was not gentle at all. I had a 104 fever, in pain, scared to death with this guys finger behind my left ovary, he jabbed down with his other hand. He nailed it and got his answer, as I screamed so loud that my mom heard me in the waiting room.
The next month, mom woke me to go to the 4th of July parade (1976), I didn't want to go as I didn't feel so good, went to the bathroom and freaked out, as still no one had informed me of a period, thought I was dying for sure.
The doctor tried a few things for treatment, eventually the only thing that kept me upright was 'tylonol with codein'. They told me it was real stong tylenol. I used that every month till my first year of college, when the college docs wouldn't refill without a exam, but they would prescribe bpc without exam. After college. I had married and had a son, 8.5lb .During labor, I had passed the point of pain meds, 3 and half hours of heavy pushing, I didn't scream, curse or cry, I didn't know I was supposed to.
It didn't really hurt that much more than cramps. Later the obgyn got in my face and said not to let anyone convince me I had a low tolerance for pain. A year later, I woke up and went to pee and it felt like being hit with a 2x4 across my back, diarrhoea, started vomiting, finally hubby took me to the hospital. They said I was having a bad ovulation. A month and half later, I passed out on the floor with my baby. My doctor was out, so I saw a young lady doctor, who said I had cramps, I protested, but she sent me on my way with a prescription for Alieve and water pills.
I was so tired, I drove to my parents house where I got sick again and they took me to the hospital where they were happy to see me and my insurance card. They said my kidney has been backed up with a stone for some time now (in the end it wasn't just a stone that was the problem, but endometriosis around the tube that runs to the bladder).
Since this time, I have had quite a few doctors and my file is extensive of chasing one pain or another (getting no answers), allergies, asthma, IBS, incontinance and migraines. In 2008,I had a new obgyn and brought up the heavy periods and we did an ablation, after all the routine tests came back normal. This year 2010, the winter was mild and so I set out with a power saw to trim the trees, my allergies aren't as bad in january, but after weeks I wasn't getting stronger, I was getting more tired.
At the end of Feb. I was on the computer and got up and went into the worst agony I could remember. I couldn't talk, hubby called 911. They took me to the hospital, Ct showed a ruptured cyst, hospital told me to go to obgyn ASAP, mine was out of town, their recommendation couldn't see me for weeks, I ended up with someone I didn't know at all. I was in agony even with the vicodine, I was scared, and completely clueless. The obgyn (pour guy) asked if I had anything like this before...Nope...happen during sex...Nope...every answer was nope. I was absolutely mortified. I had been taking fist fulls of ibuprophen for my arthritis combined with a high tolerance for pain mixed with a lot of denial was convince nothing was wrong.
Tests showed the cyst grew back and uterus enlarged. I was 46 and having a hard time breathing because of the pressure in my abdomen and my liver function was diminished. When he said surgery, I said when and where?? By the day of the surgery I could hardly sit up. Doc was going to do a robotic hysterectomy, but ended up doing an total abdominal hysterectomy. Then he saw how messed up I was inside. The cyst was over 8 inches and adhesions were around my colon, on my liver, kidney tube to bladder, uterus, ligaments, and most everything else.
Two surgeons, 4 hours of surgery. If that sucker had ruptured again, I would have been in a life threatening situation, as my bp was high. I am allergic to many antibiotics and my breathing wasn't so good. I am at week 8. I haven't felt this good in decades. He doesn't want me on hrt in case they missed anything.
I was already taking ginseng and zy-flammend (herbal anti-inflammatory ) for arthritis, so the hot flashes are tolerable. I was already doing much of the endometriosis diet for my allergies and lots of stretching. I know there are so many women out there who are getting mistreated, misdiagnosed, misunderstood and emotionally scared for life. If only they were diagnosed early they wouldn't suffer as much and miss out on so much of life. I had a lot of time to think about all the questions doctor asked me in the beginning, and as I worked my way back year by year I was able to pull up all the pieces together and am starting to heal mind and body.
So far, I am off of all my IBS meds, haven't had to use my inhaler in 6 weeks, can go outside to spite the neighbour mowing, my bp is down 20, my pulse is down almost 30, my weight down 25 and I can dance. I am keeping on the endometriosis diet and off the hrt and hoping this doesn't come back. I have started telling the ladies/girls I know about endometriosis. So far one 18 year old's diagnosis has gone from 'stress' to 'endometriosis' and a 43 year old thought she was going to die and got all the tests back normal and clean, but most likely adenomyosis so she is trying a naturopath. Two other gals are going to head to the doctor here soon. Thank you for your website, it was the one that made sense to me and has allowed me to spread the information around. DeAnn
Stories - Page 35