Endometriosis story

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

Symptoms gradually getting worse

by Jennifer
(Winston Salem NC)

I was diagnosed with Endometriosis at the age of 17 and I will be 38 in July. I have suffered so bad for 2 yrs with this terrible disease. I always felt alone because I never knew anyone else with Endometriosis.

My symptoms continually get worse. VERY heavy periods, extreme lower back and abdominal pain and very uncomfortable during sex. Just want to stay in bed in the foetal position.

Now for the past 3 months I have absolutly no energy and always feel fatigued. Hard to explain but some days its like I have to concentrate just to walk (left foot, right foot) then sometimes during these spells I feel so week and I get this weird sensation that runs from back to legs and feels like I could pass out.

I have also started having vomiting and a lot of nausea. I didn't put this down to the Endometriosis until today reading through the other post.

Also about the same time I started having aches in my left hip (and just put that down to getting older) but from what I've read today, that is also a symptom of endometriosis.

I really don' know how much more of these extreme symptoms I can handle, they make me feel like I'm loosing my mind.

Anyway just wanted to say thanks for all the posts, makes me feel like there are people out there that truly know how I feel. People that do not suffer from Endometriosis - it's so hard to make them understand our pain.


Name: Jessica Poff

Title: You are not alone.

You are definitely not alone. I too was diagnosed at the age of 17 but it was a 4 year battle to get them to diagnose me with endometriosis. Finally after 4 years of complaining and missing so much school they did a laparoscopy. I found out I was covered with the stuff. It was everywhere.

The doctor who convinced my mom and I that it was all in my head and I am being overly dramatic felt terrible. I am going on 29 and it is back. My new doctor, who I love because he listens to me, believes that I have endometriosis again.

But I too thought I was alone with this. I would have the worst menstrual cramps and my friends would all tell me that they too have bad ones. I would laugh and say you have no idea. Even the school would think I was just trying to stay home but I was bedridden.

I too could barely walk. I would have pain shoot down my legs like my sciatic nerve was inflammed. My the blood loss I experienced was very scary. I would be so anaemic. You could just see it all over me. I looked very sickly. But no one would believe me. Not even the doctors for years and years.

For 4 whole years I would constantly go and beg them to help me. I think that's what makes me so angry. How much money was wasted paying them to only feel like your hopeless and stupid or paranoid. But thank God now I have found a doctor that listens and understands what endometriosis is.

Name: Anonymous

Title: I need advice

I am 17 right now, I have been battling all the symptoms described for almost a year now. I've been to the emergency room several times for how intense the pain gets, they've done countless blood and urine tests. An MRI, four sonograms, and "can not find anything."

I am now dealing with what the doctor thinks is hypoglycaemia. And when I saw that it could be a possible symptom I was baffled. I've been to one specialist and she said it could either be endometriosis or stress... All the doctors have done is given me prescription pain killers and put me on different types of birth control.

It still isn't getting better. They say they don't want to do surgery to diagnose me with this disease. Do you guys have any suggestions on helping me find a doctor who takes this seriously?

Name: Kirsty

Title: Painful Journey

I too suffer greatly from endometriosis and have had it since I started my period at the age of 10 but was misdiagnosed until the age of 27! I am now 38 and have had 3 surgeries. The last being more drastic to slow down the growth but to my dismay and heartache it did not work.

The pain returned with a vengeance. I too now have the aches in my hip and groin area and most days feel like I can't take another step! If it wasn't for my faith in God and my children, yes children in spite of all of this God blessed me with 2 beautiful children, I would probably have ended it myself.

Ashamed to have felt that way, it is extremely difficult to deal with, often feeling like no one understands and that it will never end! I awake every day asking for strength to make it through the day! I have a great set of doctors who have never made me feel like I was crazy and continue to help me the best they can!

Name: Kim

Title: Crazy symptoms

Hi! I too have been having painful periods through the whole month and very heavy. Painful when going to the bathroom (both) and almost passing out. Doctors went in to remove cyst and found a lot of scar tissue.

Endometriosis had attached itself from colon to ovaries and now left ovary is no good and he can't promise me the right can be saved. I am 33 and will be heart-broken if he can't save it but, again I do have 2 kids who mean the world to me.

Hearing stories about it coming back again and those who have repeated surgeries is scary. Can anyone tell me why it comes back again and again? Anyone??????
Thank-you, Kim

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