Endometriosis story

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

Confused, doesn't feel normal.

by Marie

I am a 32 year old mother of one daughter. I've read so many stories about painful periods, heavy periods etc. But I haven't had that. I've felt my symptoms for about a year and a half now, and have NOT been diagnosed.

I started having pain in my hips/lower back/tailbone/right side and sharp pain during urination. Once in a while I would have pain during sex and almost always after. I mentioned it to my doctor and he seemed to just look at me like I was making it up, as if i were a hypochondriac or something.

Last year I was in a car accident and have been going thru massage therapy, physio and recently had to see a specialist to see about nerve damage. I also had a gastroscopy/colon surgery which lead to a diagnosis of IBS/colitis.

I've been changing my diet and exercising but nothing seems to make this pain go away. Once in a while I'll feel the pain during the month aside from the week before and during my period.

When I was younger I had bad periods but not severe. I always feel run down or tired, always complain that I have absolutely no motivation, constant sore throats. Sometimes my hot n cold flashes are so bad I can sweat profusely and shiver.

I'm worried that once I bring it up to my doctor he's not going to suggest anything. I've had a hemmoratic cyst burst a cpl years ago. And was told by a family member to watch out for cervical cancer as it runs in the family. Do I just go and ask my doctor if he can refer me to a gynaecologist?

My symptoms of IBS/Colitis almost never seem to be relieved even tho' I follow the purposed course of dietary changes ie: High fiber/protein etc. During my period I get very bloated, depressed, I sleep a lot, no cramps but the pain is there, my legs sometimes feel like they go numb from pain, painful bowel movements/urination, hips are in pain as well. My period is not heavy but rather only about 3 to 4 days and after the first day I don't know if it's over cuz there's almost nothing.

Do ANY of these sound like endometriosis??? Help anyone? worried and confused. It just doesn't feel like normal period.


Name: Anonymous

Title: Similar experience

Like you, I never had any of the "typical" symptoms of endometriosis. No terrible pain with my periods, no trouble getting pregnant. In fact, my first clue of endometriosis came when I was about 5 or 6 months pregnant with my twins and had a really odd blister-like growth coming out of my belly button.

When it started bleeding, I went to my family doctor and was told it was fine. I asked my dermatologist about it at my next appointment (at this point it hurt), and he did a biopsy and it came back as endometriosis. Even my gyno said she had never heard of it growing outside the body!

Fast forward through the rest of the pregnancy, a c-section, and a few more months. I got an IUD for birth control, but sex became uncomfortable and sometimes painful.

After a couple years, I mentioned it to my gyno who decided the strings on the IUD needed to be trimmed. That did help some, but a follow-up ultrasound showed a large cyst in my right ovary.

Sometimes I'd have pain so awful when I needed to urinate or have a bowel movement that I'd fall to my knees. And I swear I said all the time that my cervix hurt!

Over the next 6 months, I went for a few ultrasounds to watch the cyst. Since it continued to grow and became over 5 cm large (in the danger zone for rupture!), my doctor said I needed a laparoscopy to remove it.

During the procedure it was found that my entire abdominal cavity was covered in adhesions and scar tissue. My entire uterus was enclosed with endometriosis, then being pulled up to my abdominal wall by a band of scar tissue. And my intestines had scar tissue on them as well. The ovarian cyst was so big because the inside of it was endometriosis.

My doctor said she sees endometriosis all the time, but mine was awful even though I didn't have the usual symptoms. She also said the severity suggests I've had it for years and years, which I find odd since I had a c-section two years ago and you'd think that doctor would have seen/removed the endometriosis when she was in there.

I had to have my IUD removed and switch to birth control pills or the depo shots because I need a low dose of hormones to help keep the endometriosis and cysts in "remission." I'm 28, and my doctor said she would counsel me differently on my options if I was older.

Hope this helps you! Definitely go talk to a gynaecologist.

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