Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Not sure about my symptoms

by Pixie

My personal endometriosis symptoms include:

The week before menstruation I suffer shoulder pain, nasea every day almost all day, diarrhoea starts, huge lack of energy...when I eat my stomach blows up....and some days a bit of food will come back up within a couple hours of eating..

The day menstruation starts I have full diarrhoea, sweats, nausea to the point of not sure whether to leave the wash-room.

On day two or three I have the same symptoms, but the pain in my back and stomach are so much that I am stuck in bed for at least two days. As menstruation leaves slowly almost all symptoms stop.

I was diagnosed with IBS....but honestly I have almost no other symptoms until pms starts. The dr is going to give me bc to try to stop the cycle, and I am so dissapointed with this. I have had trouble with bc my whole life, and i am worried that this either isn't going to solve the problem, or worse mask the problem. If it is being managed, Drs stop looking for answers.

My gastro specialist strongly suspects endometriosis, however my family dr is completely against this......due to a year ago I had to have an ovary removed due to a cyst, and at that time there was no endometriosis.

Can women really not get help. I suggested that if the periods are all that causes all my symptoms why not a hysterectomy. Apparently not an option...I had also had gallbladder removed last year due to stones. I was sick enough to quit my job.

I am at the point where I am wondering what company will hire me when I have to take a minimum of 5 to 7 days off sick leave a month. The rest of the two weeks a month I feel great .. feels like a huge joke.. I hope other women are having better luck..


Name: Patricia

Title: Celiac Disease

I have been reading these symptoms and have had various degrees of these pains, and always heavy bleeding. Severe bloating and other issues. I was finally diagnosed with celiac disease after 40 years of misdiagnoses.

Removed all gluten from my diet. Temporarily removed all other foods that caused reaction; for six months...I am so much better. Not entirely symptom free, but after problems my entire life this is a great improvement.

I recommend finding a M.D. who practices functional medicine. Have your stool tests include IGA tests for gluten, milk, egg, soy and corn if possible, but definitely gluten. Remember the reaction takes place in your bowels, so blood tests for reactivity is often false.

My heart goes out to all of you. I know what it feels like to be running on empty...

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Should I have a laparoscopy

by Sarah

I am 23 and just looking for some advice about endometriosis or anyone with similar stories?

I have been on the contraceptive pill since I was 15. Three years ago I had pelvic pain, back pain and irregular bleeding.

I went to the doctor and had various tests which were all fine. They then sent me for an internal ultrasound and found fluid on my pelvis? They said this means something is going on and referred me to a gyno.

The gyno said he believed I probably had endometriosis and to take my pills back to back for three months at a time. I did this and the problem disappeared.

He signed me off and said carry on as you are and come back if it worsens.

For the last year I have had bowel problems - diarrhoea, bloating, gas pains etc. the doctor has said that it could be the suspected endometriosis.

She told me to go back to having my pills monthly and if my problems worsen, she advised that I have the laparoscopy (which I am very nervous).

I have just finished my first period taking my pills this way. It was more painful than usual. I have now started the next pack, but since last night suddenly got a lot of burning sensation in my pelvis and back and brown discharge. This is not normal for me in a cycle.

Anybody had this before? Is it normal? Do I need to have the laparoscopy? Thanks for any feed back xx

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No pain symptoms

by Elyse Sanders
(Columbia,SC, United States)

Diagnosis of endometriosis but no symptoms

I went in to see the doctor but I had no symptoms of endometriosis. I wanted to check to see if my Mirena was still in place.

When the doctor did a sonogram, he found a large mass on my ovary. He told me it was the size of a baseball. I was scared. He said he wouldn't know for sure what it was until they did laparoscopic surgery.

He said it needed to be removed as soon as possible. Well I had the surgery Oct 2010. After the surgery, he said that it was too hard to put through the belly button cut, so they had to cut me across my bikini line.

I knew when I woke up after the surgery, that they had to cut me open. I was in terrible, terrible pain. When I went to my room, I heard it from my husband first that they had to remove one of my ovaries because the endometriosis had made it to where it couldn't be saved. That was shocking news.

I had to stay in the hospital for about 4 days. It was extremely hard to walk or go to the bathroom or anything, because I was in such pain I didn't want to move at all. Once I went home, I needed help to do pretty much everything. Even sitting down on the tiolet or to get in the shower. I had to sleep in a recliner for 2-3 weeks. I could not lay down on my bed.

Months after the surgery, I was given 2 lupron depro shots. 1 every 3 months. They were very expensive. It was supposed to help with getting rid of the endometriosis. But after the 2nd shot, I was told it could come back.

I have not had a check up since my last shot the summer of 2011 to see if it has come back or not. But this is not something that can be unattended to. Especially when I want to have more children some day.

I'm in the process of getting Medicaid so I can get a check up and sonogram. And before I was diagnosed, I never had any pain symptoms whatsoever. The doctor even said when he found the mass, he was surprised I didn't come in the office hunched over. The only kind of pain I ever would have was lower back pain. But that was normal for me.

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Second laparoscopy and information on endometriosis diet needed

by Veronica Lee
(Victoria, Australia)

I was diagnosed with endometriosis officially start of last year (2012), although I already knew I suffered from it. My mother had it, and even though she is in menopause now, still believes she has it a little.

I had always had painful periods. I first got mine when I was 13 (nearly 21) and they gradually started to get worse and worse! I always seemed to think it was normal. I would end up not being able to go to school most times when I had my period, and now I sometimes can't go to work.

Pain medications did nothing for me, even taking ibuprofen or paracetamol with added codeine. I would end up crippled in bed in the foetal position with a heat pack on my stomach and feeling like I wanted to vomit and sometimes I did due to the pain.

I never though that my painful periods were anything to be put down to except genes and bad luck. But late 2011 my mum encouraged me to see my local GP and see if I could get checked out for endometriosis as she had it.

I had an external and internal ultrasound which didn't show anything, but due to my being in so much pain, my GP sent me for a referral to an OB/GYN. A couple of months later I finally got to see him and said that he would operate and have a look by doing a laparoscopy.

I had the surgery in April of 2012, and felt a lot better after recovering from surgery. I had a lot of endometriosis around my ovaries and throughout my uterus. He removed as much as he could. There was still some microscopic endometriosis left that he couldn't get.

He put me on the depo-provera injection, which I had 3 monthly. I stopped getting my period and was feeling better! A couple of months after the surgery I was starting to feel sore again. Still when I urinated and opened my bowels. But I thought to myself, it's not as bad as it was, get used to it.

But in September of 2012 my partner was in a severe car accident, which caused me to have my period for 3 weeks due to all of the stress. I started after that to be in a lot of pain again. I still kept having the injection, but to no avail.

Every month since the accident I got my period and the symptoms gradually got worse and worse again, so much so I was taking time off work again. I went to see my GP who once again referred me to the OB/GYN. The OB/GYN was quite astounded that I was still getting my period when I was on the injection.

He has scheduled me for a surgery March 19th and I'm hoping this time, it fixes me. I cannot stand to be in any more pain! The constant feeling like my uterus and surrounds are being attacked by knives and other sharp objects is just torture!

I have decided after doing some research that I will be changing my diet quite drastically to help with the endometriosis symptoms.

I'm wanting to know how others have faired with the diet and if they have been able to stick to it. I am willing to, if it will decrease the symptoms I have and improve my quality of life, but I'm worried because I'm a fussy eater.

I'm wanting to know if on occasion, you have eaten foods that are not recommended and how you have gone? And if it is okay, once every very blue moon to have some of the non recommended food. I'm a die hard dairy eater, and am going to find that hard to give up!
Thank you!

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Looking for advice from your past experiences

by Lindsay
(Columbia, TN)

Probable endometriosis been mis-diagnosed as Crohn's disease

I have not been diagnosed with endometriosis, but have a suspicion that it could be my problem. Let me tell you a bit about what I've been through.

I'm 25 and for the past two years I've been to what feels like dozens of doctors in search of the cause of pain. I get severe headaches (those began years ago) and a terrible pain in my right abdomen and lower back. It seems to be getting worse and now the pain has spread to my upper abdomen.

The pain increases when my bladder is full, also when I have a bowel movement. My life also becomes miserable for about two weeks every month right before my period.

The only thing doctors have been willing to look for is Crohn's disease, and since they found a small section of intestine inflamed they won't consider anything else.

I'd be willing to consider that if I had symptoms that reflected Crohn's but I don't, other than the inflammation they found.

I do have a family history of endometriosis. My mother had it.

Has anyone else been misdiagnosed with Crohn's disease or has inflammation from endometriosis?

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Symptoms of infertility, extreme bloating, pelvic pain and leg cramps

by Suzinne B.

Menopausal and still suffering with endometriosis

Looking back I realize now - pretty late in the game being I'm now middle aged - that I never, ever got pregnant not even once because I've suffered with endometriosis.

I'm menopausal/post menopausal now, but I still live with pelvic pain, bloating and cramping. Also, periodic very sharp pains penetrating the vaginal area. From doing internet research today, learned something new and more specific to my problems - I have GI endometriosis.

Knew I always had bowel problems associated with menstruation, and this has been going on for many years. Suffer with mild/burning pain in the pelvic region. Also, fibromyalgia which comes and goes.

Probably the most alarming symptom is the extreme bloating. As a fairly slim individual, when I'm getting "The Bloat," my abdomen easily resembles a six month pregnancy! This is most definitely not your normal post meal puffiness.

I wish I could alleviate these symptoms or have some advice for fellow sufferers. The sad part is endometriosis offers no easy solutions, if any.

Have not had a period in years, yet here I am at the age of 56 suffering today with bad leg cramps and pelvic burning connected to this condition.

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