Endometriosis story

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

No relief from Endometriosis

by Erin

My story is a long one as it covers 21 years and counting. My problems began when I was 11 and started my period. I immediately had severe cramps which I just assumed were normal. I had no idea there was a pain range involved.

At twelve, while I was in school I had such intense pain I passed out. My mom took me to the doctor and they did an ultrasound and an exam. I had a cyst that had ruptured and another one that
was the size of an orange. I was told the doctor suspected it was Endometriosis and was put on birth control pills.

I stayed on the pills for two years while still having a lot of pain. At 14 I had another visit with the doctor where he found a grapefruit sized cyst on my right ovary. I was again told to
continue on the birth control pills. Obviously this wasn't working because I had been on them for years and was still getting cysts. I did what I was told.

Age 16 was when I had my first Laparoscopy and was officially diagnosed with stage four Endometriosis. I would continue having laparoscopies to remove endo and cysts as well as two Oophorectomies every two years. I
was told at 16 that if I ever wanted children I needed to do it sooner than later.

I couldn't believe a doctor was telling a Junior in High School that she needed to even begin thinking about children. At 20 years old I was given three rounds of Lupron. It was awful! I gained 60 lbs in one year, experienced hot flashes, and early menopause. While on Lupron the
Endometriosis continued to grow so I stopped it.

I was so confused and sad because I kept having surgery and took the medications my doctor gave me with no relief at all. My doctor told me he didn't think I would ever get pregnant. I had too much scar tissue on my ovaries and tubes.

He then said it just wasn't in the cards for me. I was absolutely devastated. No one could understand why I was having so much pain. People thought I was dramatic, they couldn't believe that I would be light headed, in severe pain, nauseous and unable to do anything all because I had cramps. I felt alone and isolated.

In my 20's I started having other issues, more with my bowels. The doctor's thought it was just IBS, I had colonoscopies, they never found anything. Just prescribed more pain medications. I started to have more bad days than good. I had raging hormones but it was extremely painful to have sex.

I hated sex which doesn't go well when you're trying to be in a relationship. At 25 I was married and ready to start a family, we had been trying for a year with no luck. I was given Chlomid by the Military OBGYN. Right away I
had pain and reactions. I knew it was not a good idea to give someone with Endometriosis Chlomid but they felt different.

After 4 months they did a HSG test which was one of the most painful tests I've ever had. The dye
didn't move at all and they told me my tubes were blocked. So I decided to see a Fertility specialist. He did another Lap surgery and this time he removed several uterine fibroids and told me the only way I could ever conceive is with IVF but even with that my success would be about 20%.

Going into IVF I had half of my right ovary, an orange sized cyst on the left ovary, blocked tubes, and eggs the age of a 40 year old woman.
Thankfully IVF was successful and I gave birth to a healthy baby girl. During my c-section the doctor said it was difficult to get to the uterus
because there was so much Endometriosis in the way. They always tell you pregnancy will keep it from growing, they are wrong.

Fast forward to this year at 32 I had a radical hysterectomy, bilateral ureterolysis, posterior vaginectomy, bilateral oophorectomy and resection of the colon.

The colon, uterus, ovaries, tubes, and bladder were all stuck together. They had to do a mid line incision to get everything out. They also discovered a ventral hernia.

I am now four months post op and have a whole new set of problems because of the colon resection.
They had to do the resection because the endometriosis had penetrated the colon. Now my colon is very narrow and I have to have the GI doctor go in and widen it.I have severe colon spasms and constipation. It's extremely painful.

Through the years I have had many trips to the ER because of ruptured cysts and severe pain. My periods were always extremely heavy and no amount of pain medications could help. I have yet to be able to enjoy having sex. I thought after my hysterectomy my health and quality of life would be good but it's just one thing after the other in relation to the endometriosis.

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