Endometriosis story

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

Let my voice be heard

by Jessica Poff
(Winston Salem, NC, USA)

Age 9, that time came for me to start womanhood. My period had begun. Of course being such a young girl and not having the official talk yet I had no idea what this was. I looked as if I soiled my pants. The blood was a deep brown color. I kept it from my mother because I was embarrassed to tell her that I used the bathroom in my pants.

Well when the next day came I noticed it again and then the next day following. I thought this is weird. I still did not say anything. Until my grandmother saw it when doing some laundry and she told my mom. My mom was shocked that I could have started so soon. This was unheard of for a girl so young.

I dealt with the cards handed to me then and we had the talk. I knew though something just did not feel right but I dismissed it thinking it was normal. I was going on 13 when things really shifted gears.

I remember the blood loss was so bad and the pain was more then I could bear. I would be in a fetal position on my bed just begging for the pain to go away. My mother and I would try everything to help relieve me of this. Heating pads to cooled clothes to extra strength Tylenol. Nothing seemed to really work.

By this time my Mom decides to send me to the doctor to get answers. Of course they thought this to be completely normal and some kids have a lower tolerance to pain. So we were convinced that this was all it was to it. I did not like pain and to this day I still don’t. One stubbed toe and I am a big baby.

But something was still just not right. Well after months and months of misery and the constant blood loss my mom and I would try again and again. My family doctor’s office was still not quite sure what to think. Finally they did my very first female physical.

I remember that hurt so bad I passed out. I could not handle the pain from this. Hours afterwards I could still feel the stretching. Of course everything came back perfectly normal. I remember though at one point the nurse pushed me in the bathroom without my mother knowing and asked if I was sexually active. She did not believe my answer to be NO. Go figure.

Finally at the age 14 we had a new PA come join our doctor’s office. She knew something did not seem normal with me and was convinced that I had endometriosis but of course she could not be the one to diagnose it so she sent me to an OBGYN. I only wanted to see a female and back then, there were not very many female OBGYN’s but they found one for me.

In the month I went to this female doctor. She did an exam and saw nothing. So she sent me to do an ultrasound. Again nothing was shown. So she said that I did not have endometriosis and there is no way that it could be because I was so young. Also she was sure that I was being over dramatic and trying to get out of going to school.

This time I had missed so much school already due to the pain. I could barely hold myself up. I would rupture cyst all the time on my ovaries. I was so anaemic from the loss of blood that I just looked sickly all the time.

After fighting her she finally put me on Depo at the age of 16 and would send me to do more ultrasounds. I bled for 6 months everyday while on the depo. Finally after being fed up with this she said she would do laparoscopy.

I was 17 when they finally went in and realized I was covered with endometriosis. I had it so bad. She felt terrible. She was so convinced that someone my age was too young for this terrible condition.

I was so angry but at the same time relieved that I was not wrong. I was just blown away that no one would listen to me and my mom and I had to fight for 4 years to finally have something done. I know now that no one knows your body better than you do. If you feel like something is not right then more than likely there is. Get yourself checked. Remember you do not work for the doctors, they work for you. You make them listen to you.

I went for 4 years battling them to finally be heard and to learn that I was right and they were wrong. But that 4 years cost my parents a lot of money and time. Time that could have been spent in school. Time that could have been spent doing fun things I loved. I missed out on so much because I was in so much pain. Never again will I let a doctor dismiss my issue.

Signs to look for with endometriosis:
Period at a young age
Brown colored blood
Stringy blood or lots of big blood clots
A popping sensation in your abdomen
Pressure in your abdomen
Feels like your organs are coming out
A stretching sensation or spasms in your vagina and/or rectum
Upset stomach
Heavy bleeding
Lower back pain and pressure
Shooting pains in your leg like your sciatic nerve
Heavy bladder
Burning in your vagina

These are what I experience plus there was so much more. I am now 28 years old. I have been blessed with a child. I was told after my surgery that the chances of me ever having children were extremely slim because of endometriosis. I was also told that it can and probably will come back.

Well it is back but it’s not as bad right now. I am still having some stomach issues and pain that I don’t think will ever fully go away. I am now experiencing pain when I have intercourse with my husband. This pain can be at times so bad I can hardly catch my breath. It always comes 8 hours after having sex. A lot of pressure in my abdomen area. It feels like I am having labor all over again and I am pushing a baby out. Not a fun thing to deal with at all.

I have the choice to undergo surgery again but I want to try and hold off as long as I can. Surgeries are not cheap with or without insurance. So please keep me in your prayers as I try and hold this off as long as I can.

You can always message me if you want to know more or if you think you are experiencing what I felt.
Remember never go this long when you feel as bad as I did. Especially if you are young like I was. I think there are repercussions to face at a young age if something does not get done about. Also remember to let your voice be heard.


Name: Anonymous

Title: I'm finally having a Laparoscopy at 43!

I was a later bloomer, 15 years old when started menstruation...BRUTAL! Will never forget my Dad rushing me to ER thinking appendicitis, and only embarrassed when they told him I was only on my period. I have found out in life "only on her period" would take so much away from me. I have suffered from horrible cramping and rectal pain. Then sex came into the picture...wow. What a liar I have become with my body.

Well here I am, 43 years old, in the ER last Monday like I was as a child. This time on an IV pain med drip. It's finally getting noticed.

Don't learn to live with this ... although mine started getting worse 3 years ago, and 2 OBGYN's later, let's get it fixed!

This site has been really helpful for me. I'm not even sure if I have Endometriosis yet! But can bet you that's what it is. And why this hasn't been brought up earlier baffles me, after 2 MRI's and 7 Sonograms...

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