Endometriosis story

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

Endometriosis has totally changed my life

by Vanessa

I have been suffering with endometriosis since the tender age of 13 and wasn't diagnosed till I was 19. My name is a Vanessa and I am now 26 years old. Since my diagnosis my life has been transformed into something I never thought could be.

I have had 5 surgeries, lost a baby, experienced many long days and nights in various hospitals, playing the guinea pig to plenty of Drs hypothesis, hormonal replacements, losing jobs and downright just being embarrassed from walking and then the next minute being laid out on the floor because of the pain.

I never thought that at my age my parents would have to bath, feed and clothe me, and I’m very thankful, but what 26 year old do you know wants their parents to have to alter their lives to make sure your still going to have one????

Before all of that, I was a very vibrant out going, very active, physically, emotionally, strong young lady with dreams that only the heavens could hold. Nothing could stop me from taking on the world, or so I thought.

Now the things that I loved doing have fallen off my list of ‘to do's’ because they no longer have a place in my life, and not because it's something I'm not interested in doing any longer, it's just that this illness has taken over my life, and there's nothing I can do about it.

I pray every day that God will touch my body and heal me or to just send someone along my way that can help figure this out and put me out of misery once and for all.

I never thought that life could be worse, and I try to stay strong but when you’re in pain every waking second of your life or just feeling like crap, your perception of happiness gets altered really quick. And it's hard to relate with someone who's never been through it because they don't know anything about anything when it comes to this illness.

I have basically given up on trying to find help with this because nowadays, it's very hard to find a Dr. who still has values and is really willing to try to help people.

I have seen many Dr.s who have helped along the way, got rid of the pain for a while and then pushed me off on someone else, and I appreciated everything that was done but I just want them to REALLY understand that I just want my health and my life back.


Name: Anonymous

Title: ME too!

First, I am afraid there is only one answer. It is time to have your uterus and ovaries removed. I finally allowed that at age 30.

If you had any desire to have a child, adopt. I am 3rd generation with this disease. I NEVER considered having a child of my own after I realized I could pass this horrible disease on.
It will be hard, but try not to take oestrogen replacement therapy for 2 or 3 years. The endometriosis will not die unless it is starved. No matter what doctors say, any oestrogen is enough to keep it alive.

YES, even without your reproductive parts, you ARE a woman. Being a woman is about how your mind works, and that is already cast in stone by years of oestrogen and frowning up. You are a woman and will always be - parts or not.

YES, you can find a man, fall in love and marry, if you want to. I married a man who knew I could not have children. You can use a surrogate if he must have his genetic child. You can adopt if you simply want to raise children. Or you can chose to work, travel, and retire early because you choose not to have children.

I am now 54, married, have a career, and I have a life. Sure it is not what I planned or wanted, but last year I vacationed in the Greek Islands!
It is a hard choice, but sometimes it is the only choice.


Name: Anonymous

Title: Need help on finding info to educated family on endometriosis

I just found out I have endometriosis. I'm 26 and I've had it for 11 years. The whole back of my uterus is covered in a blood cyst, as well as both of my ovaries. Then on my right kidney there are three more small cysts growing.

As for treatment, they are giving me a shot to put me through menopause for the next year and high dose of birth control. They give me pain pills, but only 2.5 a day.

I live with my grams and take care of her. She is very demanding! I feel crazy for the amount of pain I'm in everyday! It almost never stops, and it is usually followed by severe migraine. My family keeps trying to make me feel like this can't cause that much pain, and my doctor doesn't seem to know more than what is found on the first page of google.

Is there any proof from respectable doctors that are published, to help them understand, instead of them smothering me with demands and orders. I feel completely lost.

Name: Anonymous

Title: Endometriosis has stolen my quality of life

I completely empathize with everyone when it comes to this disease.

I started to get bad cramping after my 2nd period when I was 14. It was confirmed until surgery 15yrs later. I had Stage IV with deep infiltration.

I had kissing ovaries, recto-vaginal nodule, on the bladder, bowels, and ureters. The surgery was a success but 5yrs later I am back again in the same position.

I can't have sex because it hurts way too much, my stomach hurts all the time, eating hurts and thanks to all the meds I have had so many side effects and I am sick and tired.

Why are we cursed with this disease? Its not fair.

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