Infertility

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Mother’s Day

Yesterday was Mother’s Day. In church we celebrated all the mothers in the room. Children were asked to hug their mothers and tell them “I love you, mom”. I saw teenagers give bear hugs to women who are younger than me. I sat frozen and held back my tears. I have been feeling waves of jealousy and sadness since then. I’ve cried three times since then.

I love my mother. I am afraid how lonely and alone, empty and devastated I will feel when I am her age and don’t have any children to celebrate Mother’s Day with.

I love you, mom.

#Infertility

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Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

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Grieving Something That Never Happened

Content Warnings for Infertility.

Grief is so weird and it's showing up around things I never expected it would. I worked in healthcare during the pandemic. I didn't touch another human being for nine months and when I came out of isolation after the vaccines, all my friends I was close to had moved away and had kids. The ones who stayed had gotten married and also had kids. I went from having a vibrant community to being suddenly left out of things because I wasn't a mom or part of a couple.

I tried reaching out, I shared how lonely I was feeling, and nobody heard me. I went to a "friends vacation" with this entire group. I was the first one who had to leave and when I asked if we could take a group photo before I left, one of them said "Oh, we already took it before you got here." Well, that was the final nail in the coffin for me. I pulled away from them and haven't spoken to some of the people in that group for over two years now. Not a one of them has reached out to ask about where I went or what's happened.

When I started having some weird health symptoms, I went to the doctor and was told that I could have cervical cancer. After testing, biopsies, ultrasounds, and bloodwork, (all of which I navigated alone), it turns out I didn't have cancer, just a hormone imbalance. But I also found out thanks to ultrasound images that it's essentially guaranteed that I'll never be able to have kids. I'm not married, I didn't plan on having kids any time soon even though I'm 34 and my biological clock is starting to tick faster. But to have had the choice taken away from me by my own body has been so hard.

Ever since I found out, it's been so painful to be around my friends who have kids. Seeing them happily married and their adorable families... Seeing that they have what I have wanted for so long and will probably never have. I just feel so alone and so sad all of the time because nobody else in my life understands.They all have their partners and their kids and I'm happy for them, but sad for me, and mad at life for being so unfair. I'm mad at myself for not being more intentional about dating even though I was so focused on my career and school. I've tried online dating but the entire process is exhausting and I get ghosted before I can even get to a first date.

And I feel so ashamed for being so sad. Because I am so lucky in so many other ways. I bought my first home at the age of 30, I'm working in a career that I worked to get into for 5 years, I have a cute dog, and the few friends I do still have are incredible. But it still hurts.

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Guilt

I’ve recently come to the realization that having a baby is something that will happen for me. Everyone keeps telling me to trust Gods plan and that miracles happen but to be completely honest, that makes it harder. Yes miracles happen for some people but keeping that hope alive, living my life in the maybe one day hurts more than just accepting that it will never happen. This is where the guilt comes in. I have 3 beautiful step children that I love so much and we get semi frequently. I know I should be thankful for all of the blessings I already have, but its hard. I love them and I know they love me but I still feel an emptiness. I see all of these pregnancy announcements and I still feel jealous and sad, and I feel guilty for having those feelings. #Infertility

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PCOS never goes away

I am 73, and I have PCOS. I have suffered from irregular periods since my teens which is also when I started to gain weight. By the time I was 18, I was overweight, depressed and had horrible periods. I went to a doctor who prescribed amphetamines and birth control pills. He never mentioned PCOS but I don’t think doctors knew much about it back then. It was 1968 and the drugs worked for me, although I would not recommend them since amphetamines are very addictive. But they helped me lose weight and lifted the depression. I kept the weight off for about 10 years but the depression crept in a few years before that. The birth control pills regulated my periods and hormones. I stayed on birth control pills until I was 24 when I wanted to get pregnant. When I never started my period after going off the birth control pills, my doctor gave me Clomid to start my period and I got pregnant the first time I took it. I had my daughter on Valentine’s Day 1976. I was never able to get pregnant again and the weight gain and depression started back in my late 20's. I was in my thirties when my doctor diagnosed me with PCOS. I had never heard of PCOS at this point in my life and all the doctor told me is that I will always have a hard time losing weight and getting pregnant. A few years later, around 1982 I had a cyst on my ovary burst and had to have one ovary and fallopian tube removed. It was extremely painful, I had sepsis and I was in the hospital for my daughter’s 7th birthday.

My daughter began to gain weight around age 9. She was diagnosed with PCOS when she was a teenager. She was having the same menstrual and weight problems that I had at that age. She was able to get pregnant, after 9 cycles of Clomid at age 26. My grandson was born in 2003. They wanted more children but were unable to get pregnant again. My daughter and I are both very grateful that we at least got to experience motherhood, since the disease causes infertility. We have both suffered from obesity, excessive body hair, irregular periods, anxiety and depression. We have had periods that last for months or I once went for two years without a period. We both have been on antidepressants and anxiety medicine. I now take 14 pills every day. I haven’t been able to lose weight since my late 40’s. I had a hysterectomy in my 50's so that took care of the menstural problems but not the PCOS.

I have heard a lot more about PCOS in the media the last few years and doctors seem to be much more aware of it now than when I was younger. Hopefully it won’t be too much longer before they figure out this terrible disease and maybe cure it someday.

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Dear classmate

To say my life is vastly different from anyone I know is the biggest understatement in the history of understatement. All those I graduated with have almost reached 30 years of life.

I feel the divide of our similarities widen now more than ever. It gets more and more devastating to me each few months especially as new health problems seem to come at least twice a month.

Every single doctor I have come across here in S.C. has never heard of my Ehlers-Danlos Syndrome. I have taught 50+ doctors and 150+ nurses about this diagnoses. And that isn’t even my biggest or worst health problem, though it will be with me forever.

Because of that I feel some relief knowing I will never be able to pass these horrible hereditary genes to any poor unsuspecting mini me. And then the hurt explodes that I will never be able to have a future mini me.

I adore each picture of a baby that all of those I grew up with post. So many little ones that look just as their parents did at their age. A smile I can’t help but have as a new addition to the population appears in the world, and memories of their likeness in my class many years ago plays through my mind.

It is so amazing and heartening to see each and every one of you grow as people as you become parents. You THRIVE.

My heart aches deep and low knowing I can never commiserate on going through pregnancy, maternity photos, new parent long nights and each new year birthday and school photos. It feels as though my heart has been ripped out knowing I will never get to introduce my parents to a grandbaby from me or make my brother and sister aunt and uncle to a child I brought into the world.
Jokes and laughter do their best to convince me it is all okay and that the divide between me and everyone else in the world is no big deal when my writing and words can create a large sturdy bridge so everyone can understand my side of things.

But those quiet moments alone with just you and your child, I won’t get those. Each day you wake up, get to shower, make breakfast, go to work, make memories out in the world, I don’t get that.

My life is 99% spent in my room in bed sleeping with excruciating pain waking me just so I can take my many medications-60 pills a day-try to choke down at least a teeny bit of food so my nausea can be lessened by a sliver, and then go right back to bed. I miss out on LIVING. I have gone way past my limit of painful existence just to try desperately every thing possible to improve my health. But doctors cost me so much more than I have ever gained in my full 28 years. Those who waste my living time by refusing to help me, refusing to do anything to decrease the pain that so haunts and tortures me millisecond by millisecond. Years go by wasted being spent with doctors I pray will help me just once but they scoff, being not one bit bothered by my discomfort and ocean of tears.

This is the healthcare the world has been building. And I, for one, have never wanted so badly to LIVE when I am being told to not exist.

I don’t get to go to work and do what passion I love most of all. I don’t get to go to a home I own in a car I love at the end of the day. I don’t get to spend time with friends or family not because I don’t want to but because my body won’t let me. The freedom of choice in my life is almost nothing. Claustrophobia in a tiny room I exist in is not an existence anyone would choose. I don’t even get to go to more school as my health is so negatively unpredictable. With home health care at last I don’t have to expend everything in me just to try to get dressed for the day and making my hair presentable.

Each of those medications is so necessary and yet each side effect possible and those doctors say aren’t, torment me even as they half help me. Beggars can’t be choosers.

I want so badly to be content as I savor scraps of joy every few months. But as time passes, so does any tiny dream I ever let slip out of my eyes and drip down my face.

All of us with bad health or no health want nothing more than to pretend everything is okay and that we have the same happiness and freedom that is suppose to be a God-given right to each child that comes into this world.

But at least to a small part of me, infertility is not the worst thing for a chronically ill chronically in pain girl with a chronically failing body.

Please, savor each moment you have to live, go to work, be with your kids and spouse, make memories or take vacations to places far away.

Because once your health starts to fade, it is near impossible to get back.

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🕯️Wave of Light 2023🕯️

Nothing can ease the pain & devastation that comes with pregnancy & infant loss. Today we remember all the precious souls too wonderful for earth & the loved ones they have left behind.

#waveoflight2023 #Miscarriage #Infertility #Prematurity #ChildLoss #Grief

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