Endometriosis story

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

My diagnosis of endometriosis took eighteen years

by Julie
(Grand haven MI)

Personal experience of years to get diagnosed with endometriosis.

I had painful periods from twelve years old until thirty years old. I was told I just have cramps take motrin. The cramping was so painful I would have to stop what I was doing and breathe thru it like I was in labor until it let up.

I was in the ER on several occasions for cysts and told they weren't cancerous, don't worry about them. At one point I had one the size of a grapefruit and they just monitored it for a few months until it exploded.

I was depressed, couldn't get pregnant for over six years and finally felt defeated. I was told I just couldn't tolerate pain well. I felt like a whimp. So finally accepted at thirty years old I was fine and my husband must be why I couldn't conceive.

Went to a fertility specialist that made me and my husband be seen and take tests to see what was wrong. The first visit and the doctor tells me I have endometriosis and he needs to do surgery - a laparoscopy to take some cysts out and investigate how bad it was.

Well turns out I have endometriosis stage 4. I balled my eyes out as I wasn't crazy and the doctor said he was surprised I was walking around.

After taking a drug for three months that put me in menopause. Alot of praying we got pregnant naturally. I thought the doctor was gonna pass out when he found out, he thought we would need IVF.

I am proud to say I have a lovely five year old daughter but on a sadder note my ovaries were so damaged I couldn't have another and am a thirty six year old that had to have a full hysterectomy.

My life is great but I wish I would have pushed for myself and fought harder. So my advice is you know yourself better than any doctor. Fight for yourself hard, get fifth opinions if you have to.

Demand an answer for your pain because the pain your having is your bodies way of telling you something is wrong.


Name: Anonymous

Title: Thank you!

I am going through something very similar. I am 42 and have never had children. Haven't found the right guy yet lol but IF I had I would have liked to have a child. Maybe some day before I'm ancient lol.

So I wanted to thank you for sharing. I have been in pain and had ALL the other pms symptoms since I was 12! Now I feel like I am going loony! Been off birth control for 5 yrs and my periods are even WORSE! So it's time. I'll skip a month then the next mth will be 11 days of hell! It's unreal. Anyway thank you so much. I will be getting checked soon. I have a referral for a good gyno.

Name: Anonymous

Title: I'm so sorry!!

I'm crying while reading this post! I can't believe how painful and emotional it is to deal with endo and infertility. I will take your advise and ask for 2nd and 3rd and 4th opinions before getting a hysterectomy, even though sometimes this feels like the only way to go.

It took me 10 years for my diagnoses and that was only because I paid for 2 operations myself £9000 worth. The doctors kept telling me my pain was stress. Now I am 31 years old and many, many fertility issues. IVF had now failed 2 times and not hopeful for the third and final time.

Very depressed and seeking similar stories! This site has made me realise it's all too common and I'm not alone! But I am alone in my world. Friends and family don't really understand as they all found it very easy to fall pregnant.

Thank you for your post. I hope you have been able to accept and move on from our ordeal. And I'm so happy for you that you had a lovely little girl!!! Take care

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