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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Dec 21, 2016
Constant Pain
by: Lia

I am also 17 and was told pretty much all my life, well since I hit puberty that the pain I was feeling was normal and that I was just being a wuss. No one did anything to help me so I believed it was just something I would have to live with.

I had regular migraines because of the Endo and developed an acid reflux problem causing me to not be able to eat. My health got worse and worse and then suddenly I started getting cramps constantly, every day of the month and the pain was unbearable so finally someone listened and I got help.

I was diagnosed with endometriosis and thanked my lucky stars we had health insurance so I could actually get the op done within the next two years. A week ago today I had my operation and am currently recovering.

Endo needs to get more recognition and all its different variations not just the classic - it really hurts once a month. Many of my teachers were getting mad at me for missing so much school and acting like i was a slacker because they refused to understand.

People need to stop treating it like its nothing, like you this isn't for pity its just my story in hopes more people will realise it is felt in different ways and needs to be taken seriously.

Jan 25, 2016
I feel like giving up.
by: Anonymous

Hi. I was diagnosis with endometriosis in March 2012 at the age of 15. As its turns out I've had it since age 13. Now I'm 20. The pain is so unbearable the doctor has taken me out of work.

I also had to cut back on my college courses. Somedays I can't even get out of the bed. I am currently on Lupron in which I get the shot once a month instead of every 3 months. It's not really working.

I also have the bar in my arm and on estrogen pills. Nothing is working and nobody understands this pain. I've cried my self to sleep multiple times. I can't sleep without taking narcotics and using my heating pad. In which I'll be up 2 hours after taking the medicine.

I just want to give up! Like what's the point it's no cure and my life is being ruined by my disease. It's been 7 years and still no positive results. I want to hang out with my friends, go out and have a good time. But that's impossible I'm always in pain. When I have flare ups they last weeks at a time. I barely have an appetite any more all I do is lay around.

What do you guys use for comfort? Now I'm being sent to Chapel Hill medical center for further treatments.

Nov 15, 2015
My life is over
by: Anonymous

I've had unusual bouts of pelvic pain over the last 3 years, and gave up looking for a cause when doctors began telling me it was all in my head when their tests came back without results.

The pain that comes with sex and pelvic exams is beyond horrific. Again, I was told it was my fault it hurt. A few months ago I ended up in the hospital with abdominal pain so badly, i thought I was dying. After persistent pain, and pleading with my doctors, I saw an OBGYN. and I have endometriosis.

Everything I see about the condition online says that it never gets better, that living without pain is never going to happen, and that sex is always going to be horrifically unbearable. I've never wanted kids, so infertility is fine. But at 23, it looks like my dreams of a corporate career and loving husband are never going to be attainable.

Is a lonely, isolated life of daily pain all I have to look forward to for the rest of my life?

Nov 09, 2015
My story
by: Jessica


Your story really touched my heart! You are strong and like others say "be brave". I know that this is what we should live by as endometriosis sufferers. You have gone through a lot at such a young age. For every life of suffering there is, there is a life of purpose on the same coin.

This is my story...

I am 25 years old and have been suffering from endometriosis since I had my first period at 12. I have had the use suffering within the last 3 years. Starting when I was 12 I have had 7 day periods, flu like symptoms, heavy clot flow and pain very month.

I started birth control to control the flow at 21. When I got married 3 years ago is when my symptoms worsened. I would feel so much pain during and after sex. I would bleed after sex too. Then nausea was taking over my life to the point every morning for a year I woke up and threw up. I would have nausea after sex too.

Constant bloating after eating. Always had some reaction to food such as diarhea or upset stomach. Pain worsened to where I would get stabbing pains every time I had sex or went about my day. Pain moved to dull aches with an icy hot feeling covering my ovaries to sharp pains intermittently.

Migraines became a routine. My job was on the line where I had to work less. As a married individual it really affects my partners stress and mine in as marriage. Life became painful and always a day not feeling well.

I went to a doctor for a year and she thought it was other things and gave me antibiotics every time I came in to see her when I had a bleeding uterus. No ultrasound found anything. All tests came back clean. She then stated I need to see a specialist. The specialist immediately wanted to do a laparoscopy.

I had never had surgery in my life I was scared. Then I became diagnosed with endo. Now I am told if I get treatment I maybe will be able to have children and its not for sure. I'm a newly wed and facing a life long decision with husband of a disease that can leave me infertile, unable to have sex, and may not be able to work because I'm sick all the time.

We all have our story. All the same but there are bits and pieces different. Be strong. Be brave and God bless you all. I pray that God gives us the strength to bear each day.

Aug 19, 2015
Stay positive
by: Anonymous

I just wanted to reply to the young woman who is upset she may never have kids, please don't think like that. I have endometriosis and polysystic ovaries and I have 3 perfect children. Doctors where amazed but it does and can happen so stay positive :-)

I suffer constantly with severe pain and heavy bleeding that never seems to get easier. I also suffer from headaches a lot, I didn't realise this could be connected. Im hoping one day this will be more recognised and more help will become available. Right now it is ruining my life. I am trying to get into university but sitting exams in that much pain is proving difficult x

Jun 03, 2015
I can relate
by: Anonymous

I have had endometriosis for a long time, I was at stage two by age 13. I have been on all kinds of birth control since and it has ruined my body. I have trouble with my weight and skin. The stretch marks are the worst.

If it helps I've definitely learned to manage the pain with heat, prescription pain medicine, and exercise. I'm sure everyone else on here has tried all these as well. It can certainly put a strain on you relationship with your significant other when it interferes with intimacy and something that I struggle with the most.

I love children and I am terrified as well that I won't be able to have them. But I will continue to take care of myself and keep hope. My doctor said as long as you manage it, it is possible and not to give up. To everyone struggling I truly understand and feel your pain. But it doesn't have to control us and we should find more ways to raise awareness and work towards a cure.

May 30, 2015
Endo sucks!
by: Anonymous

I am 31 yrs old and after a laparoscopy I was told I have stage 4 endometriosis. My intestines including my uterus, bladder and fallopian tubes were 'stuck' together. I have been told that conceiving children will be likely 'impossible' and that I am at great risk for having a tubal pregnancy as my fallopian tubes are too damaged to carry an egg. It sucks.

Period (no pun intended). On top of not being able to have children I have the worst periods; pain, PMS, bloating, nausea (you all know)... I just don't feel like me. Just sharing to say that this sucks but you are not alone - I am not alone.

May 27, 2015
I really need some help!!
by: Anonymous

I don't know if anyone will see this but I need to vent. Endometriosis is completely destroying my life. It has sent me into depression, I have dropped out of school. I haven't seen any of my friends for a year, my weight has ballooned and I can't lose it because when I try to exercise I end up dying in pain the next day.

I don't want to leave the house or even get out of bed because I just feel so low and terrible. The constant pain every single day is just debilitating and some nights I just wish I wouldn't wake up because my whole life has just fallen into this awful blackness.

I hate this because its not me, I used to be so bubbly and outgoing and I just want to be that girl again.

Oct 11, 2014
I am losing hope
by: Amanda

I was in the emergency room in 2011 and 2012 so often I can't remember how many times, finally my gyno did a laparoscopy, then after the surgery I was not given any education on preventing the endometriosis from coming back. I was still having periods and was begging for pain medicine.

I went to a different gyno because they would no longer help me and was given Lupron, well I ended up being allergic to Lupron and it caused me severe pain on top of the endo. So after fighting to get help with that doctor and being thrown in the ditch it has been a complete nightmare the last 3 years.

I just had another laparoscopy last month, my gyno told me I had severe endometriosis and told me one of my ovaries was stuck and it was all over my intestines and he couldn't get it all and I was referred to a pain specialist.

Well in the appointment I was told to alternate tramadol with hydrocodone and to taper off of the hydrocodone, I was also given diflocenac and was told that if it didn't really help then don't take it. GUESS WHAT. When I called and told them the tramadol isn't helping as well as the hydrocodone the doctor said that he told me in the appointment that he was taking me off of both of the pain medications, which was never said.

Why would a doctor take you off of pain medicine with severe endometriosis just 3 weeks after surgery, he told me to take 2 cymbalta instead of one daily. That was their answer after leaving several messages and fighting tooth and nail to try and get some pain relief.

I don't know what to do.

Sep 29, 2014
Teen suffering from endo.
by: Anonymous

I was diagnosed earlier this year that I have stage 4 endometriosis. I am only 15 years old. I was starting to get pain and symptoms probably since I started my period at 11 years old. I just really needed to vent so I just decided to write this out. Endometriosis has literally ruined my life.

It completely destroyed my social life. It's difficult for me to go out with friends... I can barely make it to school half the time. Not to mention, I was part of my school band. I was one of the lead singers. I got really sick right before the competition so I couldn't attend. I was kicked out of the band. That hurt me so much because singing is one of my biggest passions. Everything just really sucks.

Endo has affected my bladder the worst. They haven't done a laparoscopy so as far as I know, I could have it everywhere else. It's really difficult dealing with endometriosis. I hate it so much. I hate having to take so many pills. I just wish I could be normal.

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