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Amy’s Story (Endometriosis)

Amy's Endometriosis StoryHello, my name is Amy. I have been battling endometriosis for about 10 years now. I had my first surgery when I was 20. I’m 29 now. I had it pretty bad – stage 4. I was treated with controlled periods with birth control until last May. My husband and I wanted to try for a baby. Almost a year and a half later, I still haven’t conceived.

I had an HSG done about 1 1/2 weeks ago and the results weren’t promising. I have one fallopian tube that’s scarred shut and the other side is only slightly open. I have now been turned over to a fertility clinic, which I haven’t contacted yet. I’m still dealing with the sadness and depression surrounding the slim chance of conceiving naturally. I wanted to get my story and feelings out in some way and, since I’ve never tried before, I thought it would help to share with an audience that felt my pain and maybe could relate. I know there are a lot of endo sufferers that share my same predicament.

So IVF is the probable next step for us. Don’t see this happening any time soon since its sooooo expensive. I’m just so upset – motherhood truly is what my destiny is. I just want a family more than anything and I’m so bummed that it can’t just happen for me. All I keep seeing on facebook and hearing from all my closest friends is “I’m pregnant”. I just want to lock myself up and not see a pregnant woman or hear those words anymore. I’m so jealous of them all. I know I shouldn’t be this way and I should stay positive and make it work for me or just deal with not being able to have a family like I’ve always dreamed of but I can’t help feeling this way.

My husband tries to be supportive and uplifting but I feel like I’ve let him down too. I feel like I have no purpose in life now. I’ve always wanted to be a mom and have a big family and now that’s down the toilet. What’s it going to be like not to have children and to live without that joy? It makes it even worse when its all around me with everyone I know starting their families. I feel cheated and screwed. I just don’t know how I can turn this into a positive life and learning experience. I know everything happens for a reason but I can’t fathom why this has happened to me. I also think about how I am an only female child (my brother is gay so he will never have kids) and can’t give my parents any grandkids. The guilt and frustration builds every day. I don’t know what to do with myself.

If anyone has any good suggestions for me, I’m open to anything. I know it sounds like I’m having a pity party and I’m sorry. You don’t even have to say anything to me. I just wanted to vent and say the things that I can’t say to anyone close to me because they just wouldn’t understand. I guess maybe I needed to vent…

Thanks for allowing me to let it all out.

Submitted 9-27-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. melissa

    My heart goes out to you Amy. I am 33 yr old and am going thru the same things. I have stage 4 and was diagonised at the age of 20. I have felt the same way, thinking why are all these people who don’t deserve children blessed enough to have them. I too always dreamed of having a family and now I realize those dreams will never come true. Mothers day is the hardest for me, i wont go out on this day because it is so hard. I have not gone thru any fertility treatments because I think my body is going thru enough as it is now. So there are some of us who understand your pain and know we are strong and will over come these feelings but some times we have to have a pity party. Believe me we deserve it.


    • Sandie

      Rescue those kids that others did not appreciate. Whether infant or 8 year old, they will love you and love being part of a caring family. You can be a great mom and who knows maybe when God thinks you’re ready, there will be your little one. My sister had a baby boy two years ago after being told she could never have children.And he’s a bouncy, dare devil….never give up!

  2. Leann

    I truly feel your pain. I finally went to the center for
    Endometriosis in Atlanta, they are wonderful. My surgery
    Was 3 years ago and I have felt wonderful since.

  3. Rhonda

    I also feel your pain. Be very glad you still have a chance to try even if it is not natrual .
    I was told at 16 I would never have children from that and ovarian cyst desease .
    I went through a couple surgeries . And then later on in life I was diagnosed with Urachal cancer.
    The rarest of rare cancers. I also now have Chrons desease .
    I had a full hystorectomy.and a bladder surgery.
    It’s not that I have never had children in my life I raised 2 boys ( nephews ) and a girl( niece ).
    I wish you luck in your fertility. Always remember there are other options to h be children in your life.
    It’s not easy but the options are out there.

  4. Katti

    Amy, I am so sorry. I can’t imagine what you are going through. I know of something that helps with MANY health issues. I think I might be able to find an endometriosis story…if you ae interested…here is a website to check out, and let me know by email if you want more info…

  5. Katti

    Sorry my email is

  6. Sandie

    While it seems like you’re in a horrible nightmare, know that God never gives you more than you can handle. The fertility Clinic in Madison WI is fabulous.I have never had these complications but many of my friends have. While the treatments are expensive and may cause you discomfort, they may be worth a try. Don’t forget adoption. There are many children who will love you and would love to be in your family. Never give up and pray to God and ask for a miracle. They happen everyday. Good luck and remember ,children are God’s way of saying that life goes on…….Take care.
    P.S. Note to self—get massages, take bubble baths, reduce stress it reduces cortisol and keeps your body healing.

  7. Melody

    When I was 19, I received the news that I may never have children, something I dreamed about from the time I was a little girl. It completely blew me apart! I have a family history of endometriosis, so I knew there was a possibility I may have it but figured that I was ok since my mom didn’t have it and has 5 kids. I was wrong though and the dr told me that if I was going to have any chance of having a baby I needed to do it within the next 5yrs. From then on I suffered mentally and physically, every time I thought we might be shortly after I would be in bed doubled over in pain. I stopped taking tests, the treatments, and figured if God wanted me to have a child he would show me when was the right time. I now have 3 kids and each pregnancy was a harder than the last. My daughter was my first (at 21) and I spent every other week getting an ultrasound to make sure she stayed attached while my body fought to hold her full term, my 2nd (a son) was born 18months after her. They say I hadn’t had time to build up anything while breast feeding and it enabled him to latch on but I spent the last 2months bed rested and still he came early. I figured I had been blessed enough but we still wanted one more so a few years later we tried and had multiple miscarriages. It broke my heart every time and I was finally told that I couldn’t do it anymore, my body was done so I stopped trying and gave everything away. I found out several months later that we were expecting again. I spent the next 38wks on bedrest, because every time I would try to do something, even sit in the car for 10mins, my placenta would start to pull off but I made it and my youngest son is now 6months old and very healthy. It’s been 10yrs of struggling for me and I’m just trying to encourage you that it can happen. Miracles happen every day if you just have some faith. If you are meant to have a child, you will and sometimes a child will come into your life through adoption. That child will be just as much yours as one you carried in your body. Stay strong! You are truly a wonderful woman with a lot to offer the world.

  8. Cindy


    I know exactly what you are going through, I’m 35 and was diagnosed with stage 4 when I was 21. My doctor at the time told me if I wanted to try IVF many insurance companies are starting to cover it, because of the medical condition. Check with your insurance carrier to see if it is something they do cover. I’m an the stage in my life where I would give up everything for a child, but it doesn’t look promising for me. Good luck!! There always is the adoption angle, but if your like me you kinda feel cheated since you cant get pregnant and carry your own child.

  9. Brandy

    I can relate to how your feeling. I was told growing up that the doctors were pretty sure that I had endo, but didn’t want to do surgery on me unless absolutely necessary. My doctor always told me that getting pregnant would be difficult, if not impossible. Two months before my 23rd birthday, I found out that I was pregnant. I was so excited for my miracle baby. I did everything I could to make sure that I was the healthiest I could be for my little girl. My daughter was stillborn at 38 weeks. There are many days when I get down on myself because i feel like I’ve lost my only chance to be a mother. My friends are all getting pregnant now, and I have everyone telling me that I should just get pregnant again and have another baby. I know that thanks to my endometriosis, that this is not the case. I know its unfair that other people who don’t deserve kids can get pregnant without even trying. I know its not the same, but there are a few other ways you could go. Have you thought about maybe getting a surrogate? Adoption is also another way

  10. lindsay


    I am truly sorry for your situation I myself have delt with this disease for 10 years as well since age 9 when I first had my cycle. Times may be gloomy now, but trust that it does get better! I may be just use to telling myself this but I’ve thought through things a lot since I have been always thinking in the back of my mind will I ever be a mother? But one thing I may recommend is that I have greatly considered adoption, its not having your own child, but there are many that need homes and this may be the reason we were cursed with such a awful burden, to give love and a family to those who need it most. I hope this helps is some way!

  11. Tracey

    Dear Amy,
    I am so sorry for all you are facing. I too had a long and tirsome battle. Exactly nine months before my wedding (several lap surg. and boatloads of meds since I was 13 years old) I was told by my primary care Dr. if you’re having children now is the time. You can imagine the struggle I faced at 23, half the wedding was paid but my future as a mom was at stake. To intensify the situation I worked in day care at the time, taking care of other peoples miracles on a daily basis.
    I returned to my surgeon who began a new regime of medications, basically putting me into menipause until the wedding. I would receive shots monthly and had to wear a patch daily. It was a lot!
    The wedding was beautiful, one of the best days of my life…but time wasn’t on our side. Within months of coming off the meds we got preg. We celebrated our first anniversary in June with a baby boy. There were complications after the birth and I found myself in surgery within months of giving birth. That Oct. we became preg again. Imagine my surprise begin told we might not have children and here we are having Irish twins.
    Life with two infants was busy-but that doesn’t stop Endometriosis. I soon began to feel the side effects of the disease. I couldn’t take anything because I was nursing still. At 18 months my youngest weaned and I began meds once again.
    The periods were every 10 days and very heavy. Life was miserable. I was exhausted emotionally and physically. My marriage began to suffer. I returned to the surgeon and we decided a partial hysterectomy was the only option. I kept my cervics. After the long recovery period I seemed to feel good. You know Endometriosis; it soon began to attack the cervics. My surgeon had retired by this point. I had to find a new Dr. who I could trust and understood my plight.
    Luckily I found an AMAZZING practice! We tried all options first and then I finally had the cervics removed.
    I want you to take from my story a sense of never giving up! I know you are tired, worn down, frustrated, but there are always options. You and your husband need to stay strong and believe what is meant to be will be. I hear your sense of strong will to be a mom and I truly believe it will happen for you.
    I do not know the logistics of IVF but I feel insurance should be helping you at this point. I wish you luck. I know where you are emotionally, but I can say it does get better. I wish success for you!

  12. traci case

    Hi Amy my name is Traci. I was 1st 14 w/endo stage 4 & then at 16 w/ cervical cancer. At 19 when all my friends were pregnant my doc.scheduled my hystorectomy. I too had always wanted to be a mom. In Oct.I had my 20th birthday & was 2wks out from the,I lost it. I lived in Omaha,Ne but the pain of never being a mom was too much, I packed my things & moved to Mesa,AZ where my whole life changed. A friend from Omaha had moved there months b4 so I went to stay w/her. She made me realize there is a god & we have to let him do what he does,& know he don’t give more than we can handle. Finally let it all go & I ended up pregnant 4mo.later. My son by all counts is a miracle. 3 yrs later,1mo.out of gallbladder surgery & I got preg.w/my daughter. There wasn’t a AZ that would take me on had to come back to Omaha. Both pregnanies were hard & was on bed rest at 5 mo.doc 3x a week for entire pregnancy but they r fine,well,& my lil miracles. I truely do know that just letting things go into gods hands is when all started changing for better. Look into the things u can do,diet,excercise,& etc., plus Letting Go,quit over thinking it,it helps really. I will pray for u & hope someday u get to experience being pregnant & having a child naturally & know even when it seems hopeless its not always. Don’t let them give u Lupron though,crap drug that don’t help,makes worse. Good luck to u & your husband,I do pray u get the same opt.that I did!!

  13. Joana

    Hi Amy,

    I think others have shared wonderful advice, some stories and provided a lot of encouragement. I’ve suffered for over 20 years with this disease, (I am 38) and only this December found what I feel is the best treatment to date – I’ve been painfree for the first time in years and I feel like I did before I started suffering from Endo pain. I’ll only add two things.

    1) I found an amazing surgeon in Atlanta – Dr. Ceana Nezhat – of Nezhat medical center. Another person mentioned Center for Endo – I interviewed both in person, went with Dr. Nezhat, had the most amazing experience. He heads up the gyn department at the hospital where both practices work out of. He removed the endo from EVERY organ in my abdominal cavity and also removed all the adhesions, etc. They have a better than 85% rate of non-recurrance. I highly recommend you at least research his practice, call them – they are wonderful about answering questions. I am now living a normal life with all my organs intact.

    2) Possibly consider adoption. Everyone feels differently about this option, however, after seeing my Mom be a pre-adopt mom for newborns after I got out of college there truly are tons of amazing babies and children in severe need of a loving home like yours!! She works through Catholic Charities, but I’m sure there are other great organizations out there. Catholic Charities, btw, is non-denominational when it comes to placing their babies.

    I wish you only the best and will surely keep you in my thoughts. Feel free to contact me at anytime if you need to talk or want more information on what I found to be my best option.


  14. Marla Daisey

    Hi, After trying to conceive after 20 yrs of marriage, we adopted and she’s the biggest Blessing of our lives. I did have six IVFs and two surgeries for Endometriosis. Now about 15 yrs. later I’ve recently gone through two surgeries and 9 chemos for Ovarian Cancer. My Surgeon said he thinks the endometriosis turned to cancer. I’d like to protest outside FertilityClinics and say ‘Save yourself and Adopt!” Adoption is not easy in alot of States, but is in some. I hope Texas is an easy one. I could not love our Daughter anymore if I had delivered her myself, and our Family feels the same way. There’s so many children out there in need of loving homes! Please consider it for your health’s sake more than any other reason first, and the life you’ll give a child in need of a Mother………Blessings to you!

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