Endometriosis story

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

Endometriosis is Ruining my Life

by Allison Morningstar
(Wapakoneta, Ohio, USA)

I was diagnosed with stage 2 endometriosis in December of 2011. My name is Allison and I am 17 years old.

Ever since I was first diagnosed, my life has been hell. I've always had painful periods. In fact, I started my period when I was only 8 years old. I was on birth control since age 13 to help control the cramps and discomfort.

However, the pain took a dramatic turn for the worse. I talked to my primary care doctor, thinking it might have something to do with my bowels or appendix.

Several x-rays, MRIs, and ultrasounds later I ended up at my OB/GYN. My OB/GYN actually has endometriosis herself, so she noticed the symptoms in me right away.

Almost immediately she scheduled me for a laparoscopy on December 23, 2011. The surgery went well, but of course I found out I was already in stage 2 at the age of 17. The only treatment currently available is a hormone shot that costs 900 dollars a month.

So, of course my insurance company won't cover it and I certainly cannot afford it. It has only gotten worse over the months. It started with mild belly pains, and now it has progressed to moderate pelvic pain, nausea, pain during and after intercourse, leg and hip pain, joint pain, and lower back pain.

I also get frequent headaches and have acquired some sort of "motion sickness" as well. The fact that I am infertile and may never be able to have children is what hurts the most though.

Ever since my niece was born, all I've wanted to become is a mommy. Now I might not be able to. So that's my story.

I'm not sharing it for pity. I don't need your pity. I'm sharing it because I want to raise awareness of what endometriosis can really do to you.


Name: Rachel

Title: Don't give up Hope

Thank you for sharing your story.

I am 40 and have suffered from Endometriosis since I was about your age. I have just had an MRI and I have a complex Mass on my right ovary. I had my left one removed several years ago because of the same problem, so it looks like early menopause for me :-(

Please don't give up hope of having children. When I was 30 I was told I was infertile and if I wanted another child I would have to undergo IVF. After finding this out me and my partner stopped using contraception and within 6 months I was pregnant and we weren't even trying for a baby oops :-)

There is hope for us Endometriosis sufferers, you are young and although there is no cure from our condition you will learn how to manage it.

Best wishes, Rachel

Name: Ashley

Title: Total empathy

Hello Allison and other members...
Allision - Your post has brought me to tears, for various reasons. First and foremost, I would like to thank you for being brave enough to share your story. This is my first time posting, and I don't think I would have if it weren't for your story.

I hate to say this, but I feel a little less alone after reading your story, so thank you for that. On another note, my heart aches for you, knowing that you have been diagnosed at such a young age. I was 22 when I was first diagnosed.

4 surgeries later, I am now 28 and have stage 5 endo. The pricey injections that you had mentioned worked for me; however now have osteoporosis from it. The injection that was given to me was Lupron, I hear mixed reviews. I'm single and have under went 1 round of egg-freezing. I am contemplating doing IUF and using a sperm donor, because just like you, I have a gorgeous niece, who makes me realize I would rather die then not be a mother.

I've been advised to do the fertility treatments because I need a hysterectomy. Should anyone read this and have feedback I would appreciate it.
My advice to you Allison, is to get second, third, and fourth opinions. Don't be afraid to ask questions and make your desire to be a mother very clear.

Do not be quick to engage in a surgery or accept an injection without doing your research on it. Most importantly, do not get down on yourself. I know that is easier said then done, but try not to .... you will be in my thoughts and prayers. Be well, feel good, and fight this fight - u deserve your baby when your ready.
with love,

Name: Summer

Title: We are not alone!

Thank you for sharing. I too have endometriosis. When I started my cycle as a teenager, I always had heavy painful periods that lasted very long, and got so painful that I had to miss school during those periods.

My dr put me on birth control pills at age 15 to try to regulate the pain and severity of bleeding. I got married in 2009 when I was 25 years old and came off the pills at that time to try to conceive. I immediately started getting worse with pelvic pain and excruciating pain with intercourse.

I also never had a period after I stopped the pills. I finally went to my obgyn when it'd been months without a period and sex became so painful I was in tears. After laparoscopy, discovered endometriosis stage I. I was told to start fertility meds to ovulate so I can get preggo. Just a few months later, the fertility meds started making endometriosis flare up.

I had another surgery less than a year later and endo progressed to stage II and dr said it was aggressive. It was attaching my bowel to my pelvic wall, which made bowel movements painful. I also had adenomyosis inside my uterus.

After that, dr gave me 3 more months to get pregnant before I'd have a hysterectomy to cure the aggressive spread of endometriosis. More fertility meds (Femara), the last month I had, I got preggo and have a beautiful 3 month old baby girl.

Don't give up hope. I now have my hysterectomy scheduled for October when my c section will be healed. The endometriosis is already back severely. I wish I would be able to have more children but I'm grateful I was able to have one.

Good luck to you. Hopefully endometriosis will become more aware so that we can find a cure someday. I pray my daughter will never have to endure this pain. That's my biggest fear right now. I feel for you, just know you're not alone!
Good luck!

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