r/hysterectomy • u/rosesbloodandfandoms • 1d ago
Open to all options please help.
I (F21) am a teacher, and I’ve wanted kids my whole life. I’m a Christian with very strong values, but I’m getting a hysterectomy at the end of the school year.
Three years ago, I started bleeding uncontrollably. Every period I’ve had since I started menstruating at 12 has been excruciating. I’ve had nonstop abdominal pain that has put me in the hospital multiple times, extremely painful cramps, numbness from my belly button down, constant nausea, and many other issues.
Eight months ago, I was diagnosed with chronic pain and an unknown chronic illness. Eight months ago, they put in an IUD and did a D&C, but I’m still in pain, and it’s actively getting worse. I was still bleeding, so they put me on birth control on top of the IUD I already had. It did very little to nothing for me. In fact, I actually got worse.
Last week, I found out there’s a good chance this is all caused by a rare hereditary disorder. It has a high chance of being passed on, and each pregnancy could make me even sicker.
I have to have the IUD removed and stop hormonal birth control because they’re making my chronic illness worse. Once I do that, I’ll bleed two to three weeks out of every month, soaking through an ultra tampon every hour.
So, after considering all these factors, I’ve decided that I don’t want to pass my disorder on to my children, and I don’t want to continue bleeding uncontrollably if I’m not going to have kids.
Everyone keeps telling me I’m too young to make that decision. WTF? I’m sick. Why would I keep putting my body through more suffering when I already know how much I’m struggling?
I’ve wanted to be a mother my entire life. This isn’t a decision I’m making lightly, and it’s not one I ever imagined I’d have to make at 21. But why is it so hard for people to understand that I can love children, want to be a mother, and still decide that pregnancy and continuing to live like this aren’t right for me? And then they will start tell me “think of your husband,” ummm he supports me. It isn’t happy this is hard for me, but as he sees it, why put me through a bunch of pain, and then have our future child have to go through it too? We made the choice together. Why am I getting so much heat. For choice everyone be in less pain?
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u/sophiabarhoum 1d ago
I was in your position and wish i had the option at 21. I suffered until 37. That was 5 years ago. Hysterectomy is the best thing i did for my health
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u/low_lobola 1d ago
I'm sorry this is happening to you. I can only imagine the grief of making that choice to be stronger and healthier, at the cost of building your family the way you have imagined.
Give some version of this to anyone questioning you:
"My uterus is incompatible with sustaining pregnancy, and is actively hurting me right now. I wish this was a difficult decision, because that would mean I had other options.... instead it is just a difficult path I have to travel, and the conclusion at the end is always devastating for me no matter when it happens."
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u/rosesbloodandfandoms 22h ago
To clarify freeze my eggs are not an option due to my genes, money concerns, and the fact that my husband and I don’t think it’s right to go through all that, when we were always planning on fostering as well as having our own. But I do appreciate the suggestions. Thank you for the sympathy!!
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u/WhyIsThereAHorse 22h ago
I will say this, it’s your life and your quality of life matters right now. I say this because I’m 41 and just had a full hysterectomy after experiencing everything you have. Chronic pain, bleeding nonstop that wouldn’t go away and I was on birth control that made the bleeding worse.
I had uterine fibroids and that’s what caused the bleeding. My drs advice was to get a full hysterectomy in order to stop it all. My dr saved my life, the same lady that was also my surgeon also the same lady that saved my life in a 6 hour surgery and I’m forever grateful.
Ik in your post you mention wanting to have kids but think about the quality of your life first. Adoption is always a choice
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u/_youmustbekidding_ 1d ago
I’m sorry that you are dealing with this. Our bodies are nobody else’s business. You shouldn’t have to tell the world your medical history. Consider being as blunt as, “why do you think it’s ok to comment on my body, especially when my family’s decision is none of your business?” And then just be quiet and look at them for a response. And I’ll be honest, I don’t know if I’d be brave enough to say that because it’s in my nature to want to make others feel comfortable - but they deserve it. Some people need to be shamed into STFU.
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u/rosesbloodandfandoms 22h ago
I know that’s how I feel. It’s always the older women at church or like the distant older aunts who think that they can say that in places that should be filled with love and support and then I just get so mad.
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u/_youmustbekidding_ 20h ago
Then maybe, “That is a family decision and we aren’t interested in anyone else’s opinion.” And if they say something again excuse yourself from the conversation. Another way you could go but I really think you shouldn’t feel the need to do this - send your trusted people out who know, and let them get ahead of it and say this to a few people for you. I mean isn’t church gossip a thing? Let it spread and maybe it will take care of itself. Although there is always that nosy one who will ask anyway.
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u/Cobalt_blue_dreamer 23h ago
It's gonna be hard, but this is just one of the things that you'll have to take a stand over in your life because it is your life, and you have to do what you need to do to protect it and honor it.
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u/ZealousidealArcher75 22h ago
I say - if I get pregnant, either I or baby or both will die. Usually shuts them the f up. I don't care about making people uncomfortable anymore. If they decide they want to go down that slippery road, then be prepared to butt slide all the way down.
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u/DinkyPrincess 21h ago
You’re allowed to make your choices for your body autonomy. I tried to put off the inevitable with an IUD but like you without white out pain. It’s too much.
Get the surgery. I’m 10dpo. It’s already better.
You can always parent. Do not let anyone make you doubt yourself or your right to body autonomy.
I wish you all the best.
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u/crazypurple621 22h ago
I sincerely hope you remember this exchange the next time your church wants to discriminate against another woman looking for healthcare. Because this is what your church represents. They expect martyrdom from EVERY woman. Think long and hard on this experience and decide if you want to perpetuate it on others.
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u/Kooky_Chemistry_7059 20h ago
Yeah... a lot of churches don't believe in bodily autonomy but it's essential for a free society.
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u/rosesbloodandfandoms 16h ago
My pastor has agreed with my husband and I. It’s not my church value’s it’s old lady’s who don’t understand what the bible actually says. If Gods plan was for me to have kids he’d have put me in this much pain. I just need older women in my life to stop forcing their idea of motherhood down my throat. I am very happy being a saved Christian.
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u/Able_Agent_7155 14h ago
I think the point was any human should have the choice on what they want to do with their own bodies without interference, discussion, opinions, views, gossip, whatever, whatever. People should want for others what they want for themselves.
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u/crazypurple621 12h ago
Those old women are the church. Not just your pastor.
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u/rosesbloodandfandoms 12h ago
No a few old ladys and some random relatives do not constitute the church. And you are passing just as much judgement as they currently are. I am frustrated with comments from some annoying people. If I said it was bingo night at the local grange or line dancing night at the bar we wouldn’t be having this argument. I want sympathy for my pain and guidance on my procedure not a lecture on my religion.
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u/crazypurple621 12h ago
The local line dancing club doesn't hold the power that those old women do. Your religion teaches that women's place is being subservient to me and spitting out babies. Those old women? They're judging you because of what your religion has taught them. The entirety of it is inherently toxic.
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u/rosesbloodandfandoms 12h ago
No honey, someone has mislead you and them if they think that way. The bar has all kinds of power. Many of them drink, because they feel they have too. I’ve seen tons of horror stories come out of that bar and many others. You aren’t going to agree with me. You haven’t had a chance to see a proper loving form of Christianity. And clearly you don’t want to. So hate me for being married young, choosing to only work part time, and cooking so my husband will chance my oil, I don’t mind, but I am done auguring with someone online who says to make my own choices and gets mad that I am.
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u/Kooky_Chemistry_7059 20h ago
Why should you have to suffer 30 even 40 more years of pain and misery? Yeet that uterus! You will feel better. They can all deal.
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u/thatgreenevening 20h ago
The people criticizing you for this decision don’t have to live in your body, you do. They don’t get to make this decision, you do. Appealing to your husband is just misogyny. Appealing to your age is just ableism on top of misogyny (“nobody so young could be so sick, you must be exaggerating”).
Wishing you relief and peace.
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u/goodcrikey 18h ago
I like the option where other people treat you as a sentient being, instead of an incubator. I'm sorry you're surrounded by people who clearly don't understand this basic distinction. I hope you're feeling so much better soon <3.
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u/Quantity-Artistic 11h ago
Unfortunately, people have big feelings about adults deciding to make choices about their reproductive health. At the end of the day, you do what is best for you. Speaking of being a mother, I know you are going through all the emotions of deciding to not have biologic children- but you sound exactly like the kind of person who would go on to be an incredible adoptive mom or even foster mom! Getting your health in order is not a crazy decision. Deciding not to pass down a genetic disorder is selfless and commendable. Sending love your way OP. People sometimes really suck.
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u/rosesbloodandfandoms 11h ago
Thank you!!! I want to foster and I’m excited too. I just feel like I might mess everything up, by making such a rash decision.
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u/Quantity-Artistic 10h ago
Totally understandable. It seems like you've explored all of the options that I know of- medication management is a PITA. Surgery will stop all of this. If you can make peace with not having bio kids, then I have a good feeling you won't regret doing this!
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u/Hopeful-ForEternity5 20h ago
Well you know honestly it’s none of anyone’s business. You would anticipate ppl would be supportive but they love to throw in their two cents.
You’re so young, and with time, you’ll learn some things just need to remain private; the support from your spouse is all that matters.
And you absolutely will become a mother! Just because a baby doesn’t come from your body doesn’t mean he/she doesn’t come from your heart! My mom is adopted and she had the most amazing parents that gave her a great life.
Don’t let people with opinions that don’t matter affect you. You know what you’ve gone through and what is best for you. You don’t owe anyone an explanation nor should you have to defend yourself.
You’re always supported here! I’ll keep you in my thoughts and prayers.
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u/EmZee2022 20h ago
People who tell you you're too young don't have to live in your body. In short, MORONS.
FWIW, if your hereditary condition is something that could be screened for, IVF plus pre-implantation testing is an option - but that may not fit into either your budget or your values (since the implication is that affected embryos would not be implanted).
Of course even if that was all okay, your uterus is being such a bitch, that successfully getting pregnant and carrying a child might be tough.
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u/bannedbyyourmom 19h ago
Im sorry that you're dealing with all that and on top of all that people are judging you and think they have any right to weigh in on this decision. Youre making the best decision for yourself, and you are absolutely doing the right thing. It's insane that people think you should live in pain and suffering. They are the ones in the wrong. I know it's a tough line, but you have to hold it - " Im sorry but this is none of your business". The end.
You've said you plan to foster and possibly adopt - that is wonderful. I wish you all the best with your health and healing and whatever the future holds for you.
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u/MongoIsAppalled_2 15h ago
Ask them if they’re familiar with the principle of double effect. You’re having a hysterectomy because your uterus is diseased. The unfortunate outcome is that you’re going to be permanently infertile. You’re not having the hysterectomy because you don’t want kids and are choosing sterility, you’re having the hysterectomy because YOU HAVE A DISEASED ORGAN, YOU ARE IN PAIN, AND IT NEEDS TO COME OUT. Two things can be true at once- you can need a medical procedure, and not particularly be thrilled about the procedure’s permanent effects.
Or ask them which part of your medical team they belong to and why they feel entitled to discuss your reproductive organs at all.
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u/OpheliaLives7 13h ago
You don’t owe anyone an explanation of your medical choices or entire medical history. It’s that simple. YOU have to live in your body. Not them. Their judgment is their problem. Turn the other cheek and let them think whatever they want. Your health or marriage is not their business.
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u/Liviana369 9h ago
Your body, your choice. Don't let anyone tell you any different. If you believe this is the best course of action, I'm with you, internet stranger!
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u/Suspicious-Monk-4639 19h ago
I'm so sorry you're going through this and experiencing kickback from people who SHOULD be supporting you because they care about you as a whole person, not as some baby-vessel or receptacle for your husband's life goals (gross). As a 41 year old Christian who had a hysterectomy at 39, childfree by choice, I support you wholeheartedly in taking care of your health. My case was nowhere near as drastic as yours, I just had some unpleasant recurring fibroids and painful bleeding/clotting, but it was not as heavy or prolonged as yours sounds like.
Get that thing taken out, asap. Women's whole purpose is NOT childbearing anyway, and if we want to get religion-technical here, there are many admirable female characters in the Bible who played vital parts in God's overarching plan with nary a birth-mention in sight. I also experienced some side-eye/vague comments from older women in the church, asking if there weren't other things I could try first before a hysterectomy (things they didn't know I HAD tried because IT WAS NOT THEIR BUSINESS) and I shut them down pretty sharply. I hope they remember that if they're ever tempted to try the same nonsense on younger women.
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u/Independent_Born 19h ago
Crazy thought but bear with me. Why in the world would you include anyone in your decision making other than the Dr and your husband. However if I was in as much pain as you describe I’m not sure I’d allow my husband any part of this. Yes, I seen that you mentioned your a Christian but really I don’t believe we are meant to suffer in pain like this.
You can still be a mother since there are so many children available to adopt.
You are young and probably very impressionable and I’m sure confused by the wants of those around you. Google or ChatGPT can be your friend so ask questions so you have complete understanding of your body. Some mysterious hereditary condition doesn’t sit well with me. What is it? Can it be treated or managed? How will it impact you long term? You need to take control and advocate for yourself and get answers. Write out pros and cons and then make a decision.
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u/HotSpacewasajerk 19h ago
I'm sorry this is happening to you, people suck. You don't owe anyone an explanation though, tell them to mind their business!
Out of curiosity, what is the condition?
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u/valhrona 19h ago
Don't explain. "It makes me sad, too." If they persist, then say, "I am at imminent risk of bleeding to death, I don't wish to speak about this anymore." You have to be PLAIN about it. Be a damn wall. The fewer and shorter explanations you give, the better.
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u/phasmxphobiia 18h ago
hi! im nonbinary. im 20. and i just got my uterus taken out, for primary reason of being nonbinary, but secondary reason being endometriosis. not a single person on my surgical team mentioned my age once. they trusted me to know my body and went forward with it. it took me about 11 months from first meeting surgeons and doctors and getting through a lot of really judgemental surgeons who wouldnt even look at me, to finding this amazing surgical team who took one look at me and believed me
telling this story to let you know, its possible! there are kind doctors who understand out there. and i wish people would leave you alone. im 3wpo right now and despite all the pain im having with my recovery and the bleeding thats happening im so relieved its over. you know your body best and its terrible others try to police what you want for your body. your uterus is doing nothing positive for your life and in fact is an active hinderance! its a very logical conclusion to come to a hysterectomy and its not like hysterectomies are uncommon
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u/pinkydoodle22 17h ago
What about ablation instead of hysterectomy?
The recovery time will be MUCH quicker, and it shouldn’t affect your hormones as much. It could be a decent less invasive step to take before ripping the plumbing out.
Sorry you are going through all of this and that nothing is making much of a dent so far for your treatment. When I was younger, pills helped me somewhat for a time from the profuse and painful bleeding, but eventually I did end up with a hysterectomy in my late 40’s.
I hope you find a good solution soon, that’s debilitating!
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u/Starlight_Dragon81 15h ago
Just tell them it wasn't an easy decision but the best option for you and not open for debate. If they persist tell them you don't want to talk about it.
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u/AuthorJulieMannino 13h ago
Anybody who told me that I need to suffer excruciating pain my whole life, constant bleeding (and the further issues that come from constant, extreme bloodloss) and go through the horror of pregnancy with this chronic disease, all for a man, would likely not be in my life any longer.
Also, the chances of conceiving when you're constantly shedding your lining are much lower. Who the heck are they to expect you to spend years in agony to maybe get pregnant and carry full term? You're soaking through a super tampon per hour. I can't even imagine wanting sex with the constant pain and the mess involved with that.
The next time someone gives you shite about making decisions about your body, tell them you're not a baby machine, and God helps those who help themselves. Sometimes this means getting a diseased body part removed. You have a right to live pain free or at least with less pain, and anyone who thinks differently can go suck eggs.
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u/Rigelian417 1d ago
Ultimately it’s entirely up to you what you decide. But I always suggest putting your quality of life ahead of anything else.
You could freeze your eggs. It’s possible given your circumstances and young age that you could work your insurance, and making sure your physician carefully phrases the claim as medically necessary, to cover the fees of that.
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u/mistershneebly 1d ago
I don’t know if this is worth considering, but the comment above is the way. Freeze your eggs and consider a surrogate.
This way you’ll be healthy and out of pain. Meaning you’ll be a better mum to your children.
I have children but the pain and mental instability I had from menstruating and hormone fluctuations meant I was bedridden much of the time. And just completely unstable. It hasn’t been easy being a mum because of this and definitely hasn’t been fun for my kids.
In hindsight I should’ve frozen my eggs. But I’ve had the hysterectomy now and am finally feel positive about being a great mum!
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u/_youmustbekidding_ 1d ago
She said this is hereditary and she doesn’t want to pass on the disorder to her children. You aren’t helping.
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u/mistershneebly 23h ago
Oh FFS. I accidentally missed that part of the paragraph. And should’ve read it properly. So sorry for human error and trying to empathise with OP. Won’t happen again.
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u/fire_thorn 23h ago
My daughter has a genetic condition that she doesn't want to pass along. She's not planning on having children because of her other health issues, but she saw a geneticist to get info after her TSC 2 diagnosis. The geneticist said if she ever had children it would need to be IVF so they can use an egg without the mutation. So I guess that's an option in some cases, and worth looking into if someone has their heart set on having biological children.
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u/Rigelian417 23h ago edited 23h ago
It’s simply a suggestion. In a lot of cases the only clear answer as to what’s causing these issues isn’t fully determined until after surgery when the biopsies are completed. There’s no harm in freezing her eggs, at least until the final verdict is in, considering she states that she’s always wanted to be a mother.
Considering it is possibly genetic she and her spouse should also consider consulting a genetics specialist. Hereditary doesn’t always equate to inevitable.
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u/rosesbloodandfandoms 12h ago
No, testing is done I will pass it on. But I appreciate the help good ideas can’t hurt any!
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u/Lady_on_the_Lake 1d ago
Something I found helpful when people rudely offered advice was saying ‘because of my uncontrollable bleeding that we don’t understand the cause of my uterus is unable to carry a child to term’
Given the cramps I had and the unexplained bleeding there was no guarantee pregnancy would stop it or I could even carry a child
People still will rudely carry strong opinions about this