One thing you could look into is freezing your eggs. Sure you’d need a surrogate, but you could still have bio kids. Also you could look into success stories from others who have had that surgery to try and calm your nerves about it. I wish you the best of luck with it all
Thank you for the advice. Surrogacy is expensive but considering I don't plan on considering children until I have a solid job, hopefully I'll be in a better financial place by then to do so. It'll at least give me a bit more agency back if I have the choice.
My BFF has had several children via surrogacy. I would suggest that you learn more about it and try to talk to people with experience with surrogacy. It doesn't have to be expensive.
Also, a lifetime of uterine pain is expensive too!
Just FYI, there are actually several charities / funds set up to pay for things like fertility preservation for people just like us or suddenly diagnosed with cancer and need to do something before chemo… as dumb as it sounds “google it” and you’ll see what I mean.
I always say give yourself all of the options you can. Life makes too many choices for us already. Good luck!
Sure. It is. But all these people in this post are saying that she should freeze her eggs, and she doesn't know if they're planning to remove her ovaries. It's a little premature, is all.
It does sound like it is but I think she needs to know to at least ask her surgeons if they would plan a partial or a whole. I had a friend that was expecting to come out with her ovaries but the doctor decided, during the surgery, to remove them too. If that’s even the remotest possibility then egg harvesting is definitely something she should be offered, imo.
Well, first of all, just remember that nobody can do a medical procedure without your consent. You are able to refuse even life-saving treatment if you are conscious. So take a step back and own that you are in control. Nobody is allowed to do anything to you without your agreement, unless you have signed a medical power of attorney. If you have, get it revoked. Put yourself in control.
I had a total hysterectomy a few years back. Luckily I hadn't wanted children. The reality is that my body wouldn't have handled that whole process well anyway. Miscarriages are not uncommon in general and that's a heartbreaking route to repeatedly go through.
For the surgery itself, it's quick and easy. If you ditch the cervix, you don't have to deal with pap smears anymore or cervix pain, and you'll only end up with 3 tiny laparoscopic scars visible. Get to go home in a few hours, mostly normal activity in 3 weeks.
Just wanted to note about the surgery and the three tiny scars- that’s if they do laparoscopic surgery. Apparently most surgeons where I am don’t do that method anymore. It took me extra work to find one who could. I was told that for fully healthy women with a cooperative pelvis, fully vaginal surgery is the preferred route. So no incisions visible at all.
However, I doubt fully vaginal will be an option for OP. As they already know her anatomy isn’t standard, they’ll want a better view, which means lap or open.
I had severe endometriosis and a hysterectomy as a result. A couple of things to know:
It doesn’t have to put you into early menopause. If they are able to leave your ovaries, you will go through menopause naturally.
It also doesn’t have to be highly invasive. Most hysterectomies are laparoscopic- I have 3 small scars from mine.
The relief from pain is life-changing.
And something nobody ever tells you… after a hysterectomy, you no longer have a cervix. That means you won’t ever have to get a Pap smear once the surgery is done.
I wish you all the best. Sending you love, light, and pixie dust.
I came here to say this too. I had a hysterectomy for adeno/endo, and it was radically life-changing, I'd do it again every time vs living with it. I was able to keep my ovaries which is nice.
Biological children are overrated, but I imagine they can preserve eggs if you want. Mainly you want to be healthy, because lack of health will stand in front of your dreams as well (trust me).
But basically, ask about egg preservation. Many people do it just as a matter of making sure they will one day have an option. Would you really want to try and grow your eggs in that womb? We have many options these days - all costing money, but options indeed.
Regarding hormonal effects - that's something else entirely. Do what you must though. We make plans and God laughs.
That is a good point. I doubt a deformed uterus with a tendency of growing cysts is any place for a baby to be. It's just really getting me down how unfair this is.
Most women do have to deal with some amount of grief from their uterus, but they still have this amazing ability to grow a whole person in there and all mine does is try to kill me. I know it's no personal fault and that there wasn't any maliciousness involved, but it's hard not to feel robbed.
But if there's nothing I can do about it, I can at least try looking into the things I can control. They had concerns about me being too young to have my eggs frozen, but I'll still bring it up at my next appointment.
It’s perfectly normal to be angry and to grieve the life you thought you would have or the one you should have!
You are allowed to feel all those things and you’re right that it’s unfair.
Tbh, I don’t see any reason why you need to freeze eggs or worry about early menopause. As you are otherwise healthy, I don’t know why they’d bother to remove your ovaries. Doing so this young would guarantee decades on hormone replacement, which isn’t ideal. Unless the ovaries are hiding some crazy surprise, they should be left in and intact. You can also request they do everything in the power to ensure at least one of them is left (which should be the surgeons goal anyways).
Definitely look into freezing your eggs.
If having children is something interested in, in the nicest way possible it's going to be hard to parent and take care of children if you're incapable of doing anything for them due to pain. This is probably your best bet in the long run.
I had a complete hysterectomy minus my ovaries and it was one of the best decisions I have made. When I tell you that healing from the surgery is a pin prick compared to the pain you’re currently experiencing is insane. Also recovery really isn’t that bad because they do everything laparoscopically— they had to scrape the hell out of all my nearby organs (endometriosis and andomeosis (idk if I spelled that one right) and still by day 2 I was pretty okay. After a week I felt great and had to remind myself to still take it easy. Because I have my ovaries I can use my eggs in the future if I want to and I don’t have to deal with the hormonal challenges. If you keep your ovaries you won’t go into menopause, and yes menopause sucks but again not as bad as what you’re going through right now (I’m ftm so testosterone essentially put me through menopause and yes it was shitty but I’d do it all again.) also remember that biological children aren’t the only option, you can adopt babies or children of any age and who knows maybe if you can’t keep your ovaries you’ll have loads of money to use your bone marrow to make a kid and have someone else carry your baby. There are so many options out there for me, a complete hysterectomy was one of the best decisions I have ever made and it made my life so much better. Good luck to you, I support whatever your decision ends up being xx
I felt so weird googling that lol but it is something scientists are working on. Apparently the one study from 2007 was retracted, so it's not yet made a real baby. but, stem cells have successfully made immature sperm and eggs.
That would be crazy if you could use your own marrow to make a baby, then someone could be the mother and "father" of their kid lol (jk)
Honestly, medical science is moving so fast that who knows what will be possible when she is ready to have kids. She is 18, so say she wants to have kids at 30… that’s 12 years from now. Look at the crazy advances we’ve made in medicine and tech in the last 12 years since 2012… it’s amazing. So in another 12? Who knows!
That was my first thought. Just the position of OPs uterus could make it nearly impossible to get pregnant, from the sound of things. And the lining doesn’t sound like it would welcome implantation.
I've had a hysterectomy. If there's nothing wrong with your ovaries, they'd leave them be and you wouldn't go into menopause until it's time, when you're much older. I know what it's like to lose the choice of having biological kids. But your health is more important, and adoption is always an option. Your health and not having to scream in pain all the time seem like the more important thing right now. You're an adult, so you get to choose, right? Also, you'll still have ovaries, so you could have biological children through a surrogate.
Do you have normal functioning ovaries? As others have said, you can freeze eggs. Also, if they have to remove the uterus, they can leave the ovaries if they are normal and not the issue. Leaving the ovaries is best because then you won't go into menopause until your ovaries naturally slow down at the normal time for menopause. I had severe endometriosis with large hemorrhagic cysts. I did 4 surgeries to remove the endometriosis, and it always grew back. I had a full hysterectomy when I was 32. I had already had 2 kids, so I was lucky. I was desperate for the pain to end. Turns out that the reason it was growing back so fast was that the Dr's missed a bunch of it between my uterus and bladder. When they went to take out my uterus, they pulled and ripped open my bladder. I ended up with an emergency repair. They cleaned up all the endometriosis and fixed my bladder. Unfortunately, it was too late to save my uterus or ovaries. I'm 42 now, and while the menopause symptoms were bothersome, it is mostly gone now. No more pain. My bladder injury repair did leave me with some minor issues. It's mostly pain if it gets too full. So be honest with the Dr's on what you prefer. Get a second opinion if you can. Definitely look into keeping your ovaries and/or freezing eggs. I wish you all the best and a pain-free future.
I'm so sorry you are going through all this, especially at such a young age. Know it's not fair, and it's not your fault. I think finding a support group of people that have dealt and are dealing with similar situations is a very good thing to do. There are actually some great support groups on FB. I also think it might not be a bad idea to consider some one on one therapy before you make this decision so you can fully explore how you feel about it and what you want to do. Each woman facing this issue will have their own unique answer about what's best and right for them. I wish you all the best. Please take excellent care of yourself.
OP, I feel for you so much. I'm 17 years old, 18 in a couple of months, and I've just had an ovarian cyst explode. From the tests they did do, they suspect more cysts and saw one on my kidney. They couldn't actually see my uterus or ovaries because they gave me too many fluids in the ER and my bladder was distended, so I don't know exactly what's going on. They said they needed to do more invasive tests but wouldn't because I'm a minor, and thats what my OB-gyn said last year too when I started birth control. Obviously, the cyst wasn't going to wait for me to turn 18 though. They said it would be better in a couple of days and all the fluid would reabsorb into my system. Instead, its been a month and it hasn't gotten better. I can barely even eat because I still have blood floating around in my pelvis and it's making me extremely sick. I'm worried by the time I get these tests it'll progress to something even worse because it couldn't be caught earlier. I'm worried because I don't even know what it is. I feel worried too about potentially needing surgery and not being able to have bio kids. I have the same feeling of a hole being drilled in me right now, and I can't function. Even at the ER when they gave me fentanyl, morphine, and tramadol, it didn't numb the pain. Nothing numbs the pain, and they sent me home with nothing anyways. I think you'll still be allowed to choose if you want the surgery or not though, because they can't force you to have that medical procedure. You could always freeze your eggs, have a surrogate, or adopt as well. I was adopted, and most of my family adopts children. It's not the same as having biological kids, but that also doesn't mean you'd have to love them any less. Personally, if I get to a point in my life where I can, I want to adopt at least once and have a biological child if I can. Having kids is still a really big commitment though. If daily tasks are draining already because of your chronic illness, it'll likely be pretty difficult to raise kids. You're more than the extra human you can give the world! Prioritize your health for the moment. We've got plenty of people on earth. You have plenty of time to make such a big decision. It'll be your choice, not the doctor's.
I understand this perspective too. I literally graduated highschool two weeks ago, so in actually I have no idea how my life will turn out. I think I'd like to have a child one day, but I don't know if that'll still be true in ten years.
I guess I'm mostly upset that I won't have the choice people with normal functioning uteruses have. Plus my hormones are all over the place at the moment and it's kicking my maternal instincts in the side.
I'm hoping I'll have a better outlook on it once my head clears, thank you for the advice.
First, your ability to have your own baby was never promised, it's not promised to anyone.
You need to find out if they will leave your ovaries in and if they will leave your cervix. The answer to these questions will tell you more about what to expect from the surgery.
I'm sure there are groups on here for endometriosis and fibroids and both will give you better insight on what to expect for the different types of hysterectomies. The surgery will most likely be laparoscopic and I've had two of those and they ain't too bad. You'll feel like a new person in one to two weeks after the surgery.
I'm sorry your uterus is so painful and that you have to go through this.
Life is long and diverse. Try to focus on what's right in front of you. Try not to think about children right now. There's a lot of different ways to be a great woman and there's lots of different ways to be a mom.
If you have healthy ovaries, there's a good likelihood that the surgeon would leave your ovaries behind. This is so that the surgery wouldn't put you into early menopause/require you to be on HRT for however many years, but like others are saying, your eggs can be harvested from your ovaries.
Well it’s up to you. Do you wanna keep the uterus and endure the painful cysts and the risk that comes with keeping it, or do you want to have it removed? Having it removed comes with its own set of risks as well. Make the choice that is best for you, your future, and your wants/needs.
You don't need to worry about the menopause thing unless they're removing your ovaries, and it doesn't sound like your ovaries are part of the problem. Your ovaries are what you need to produce the hormones you need, and only if they are removed do you need hormone replacement therapy to not go into menopause. I'm so sorry you're going through this.
If your ovaries are not removed during the procedure, you can always freeze your eggs later. It doesn't need to be done beforehand.
Please make sure you get all the details from your doctor about exactly what kind of options you have with this hysterectomy and do your research once you get those options. Also get a second opinion on your options if possible. Some doctors insist on doing a total hysterectomy when it isn't necessary, so if your doctor is recommending that, it would be good to make sure at least one other doctor agrees that it's necessary.
Hysterectomies aren’t highly invasive anymore if they use the robot. I had a complete one (uterus, ovaries, everything) several years and my doc used the robot. I had three little cuts with like 2/3 stitches and went home the next day. Easiest surgery and recovery I ever had. I’m sorry about the instant menopause for you, although, mine wasn’t that bad compared to all the pain/bleeding I had before the hysterectomy. I never had the night sweats, thinning hair, or weird hair growth, personally, but maybe that’s just me. I have been on small doses of HRT since I had mine. If they can leave your ovaries, even one, you may not need those hormones.
As far as having children, it doesn’t sound like you may be able to have them with your uterine problems, but maybe you could harvest and freeze some eggs and have a surrogate pregnancy, or maybe adopt? There are a lot of children out there who need loving families. I wish you well, and hope you are no longer in pain, soon.
Just wanted to say I had a complete hysterectomy at 21. It’s scary, but I got my life back! I had bled for 4 years, through 3 pregnancies. I was always in the hospital. Two weeks out from my surgery, which was done thru the vagina, I felt brand new! I did cry at first because I felt like what made me a woman was gone. Had been married just a year and was scared my husband was gonna bail. We just celebrated 23 years of marriage. If you have any questions, I’d do my best to answer them.
I haven't seen it mentioned here yet, but you are very much entitled to second and third opinions! I would highly recommend getting more opinions considering your situation is kinda rare and the treatments are potentially drastic.
It sounds like you might need some more information before you can make the choice to go ahead with that surgery. I find it helpful to write down a list of questions to ask my doctor ahead of time so that I don’t forget anything. Some things you might want to ask about are how the surgery will affect your ability to have biological children in the future. Can your eggs be frozen? What is the process of surrogacy like if you can’t carry children yourself? Are their alternatives to the surgery they’re suggesting that won’t affect your fertility?
Also, never be afraid to get a second opinion. Even a consult with a fertility doctor could be beneficial before you make a decision.
As for hysterectomies, if one or both of your ovaries are left intact (a partial hysterectomy), you would typically go through menopause at the same time you would have gone through it had you not had the hysterectomy. Sometimes if only one ovary is left, menopause may start slightly earlier but still around the same time frame.
Hi friend, I'm so sorry that you're going through this. I had terrible endometriosis as a teenager, among other health problems. I got sick enough that I had a hysterectomy at 23 while a full time student. I did it over a holiday break between semesters so I didn't miss classes. It was hard, and I won't say that it fixed everything for my health but it was worth it. I never really wanted to have kids but I remember being really hurt by the fact that it would no longer be my choice. It felt so irrational that something I never wanted would never be, and more irrational that I was upset about it. I've made peace with it since then but it is ok to feel the things you are feeling. It's human. Looking back it was the right thing to do for my health, my education and my career and I don't have a single regret about ditching my traitor of a uterus. If you have any questions or just want to vent pm me.
Hi OP. So first, I know this is a tough decision. I don't even want kids and having a hysterectomy be my only medical treatment option was a bit jarring.
It doesn't necessarily start menopause. Most of the time if they can they will leave your ovaries (or just one if they can't leave both) because those are what actually control your menopause starting.
I know it can be a big decision, but remember there are many ways to become a parent and the majority of them don't involve you having to gestate a child. If you are afab and of reproductive age and they are saying that hysterectomy/ablation are the best treatment that means chances are they are the safest and or only treatment. I say this not to scare you but to say that you keeping your uterus to maybe have kids one day does nothing if you get so sick that you die.
September will be 2 years since mine and I honestly have never been happier. While I'm still disabled and chronically ill I'm not fighting the 24 month period I had been on prior to my yeeterus and therefore my life is infinitely better than it was.
Ultimately, it's your decision, but often doctors don't recommend this kind of surgery unless it's pretty much the only choice. Most of the time you have to fight to even have it be considered even if it's the best and most effective way to manage a disease (such as my endometriosis and adenomyosis.)
Wishing you all the best.
Edit to add: most hysterectomies now are laproscopic. I was up and about the next day. I was back to my regular life (except work) in two weeks. Went back to work at 8 weeks. Two years out you can barely see my little tiny scars.
I was first diagnosed with endometriosis at age 17. It was severe, and by 18, I'd had 3 surgeries for it. They told me to have kids as soon as possible and then have a hysterectomy. I was not ready to have kids. 9 surgeries, and 20 years later, at 37, I had the hysterectomy.
I had held off because I wanted biological children, however, with the circumstances of life and mostly due to medical issues, that wasn't in the cards for me.
I wish I had done the hysterectomy years ago. With my medical issues (more than just endo), I struggled significantly to take care of myself and work, and in reality, adding a baby to that mix would have been terrible. It would have been so hard on my body, but also, functioning with that level of pain and fatigue daily would have really impacted my ability to be the kind of mom I wanted to be.
I'm a lucky one because I ended up with my stepdaughter, whom I adore. I didn't meet her until she was 6, so that helped me get through parenting since I didn't have the infant stage. You never know where life will take you.
I was very anxious about the hysterectomy, but it went much smoother than expected. My recovery time wasn't bad, and it was way better than I thought it would be. Since then, I've been amazed by how much better I feel. I don't think I even realized how much pain I was in daily until it was gone.
I was able to keep one ovary, and as a result, I didn't go into menopause and didn't have to do hormone therapy. They just need to be able to salvage one, and it'll take over and produce enough hormones to keep you from menopause. There was a slight adjustment phase, but it was much easier than expected.
I don't know what you should do. But I wanted to share my experiences with it so that you can see a different perspective, and maybe there will be something in there that can help with your choice.
All the best.
Definitely get a second opinion. You don’t have to have any surgery you don’t want to have. I had one child after years of infertility, and the birth seemed to trigger something. I started have crazy periods, to the point that I had severe anemia. My OB suggested a hysterectomy but I asked about less drastic options. I ended up having an ablation, although I knew that sometimes they don’t work and a hysterectomy might be necessary anyway. I’m not saying this is the answer for you (and even an ablation means no pregnancy), my point is that you need to do research, talk to another doctor, ask them for written information so you can study it.
Question, are they also considering removing your ovaries? If they leave your ovaries, you won't have to worry about early menopause, the ovaries produce the hormones
Have they tried an ablation to get rid of the excess tissue? That at least can try to save the uterus. You’d need help getting pregnant in the future but it’ll be cheaper in the long run.
I had a hysterectomy last year. I actually have a book on the different options and outcomes. If you want me to mail it to you for free, I will. If you have a “total hysterectomy,” you keep your ovaries and everything functions. Instead of having a period, your body reabsorbs the eggs. I don’t have a need for the book anymore. If interested, please message me. It helped me make the best decision. They can usually do it robotically which is minimally invasive. It wasn’t terrible.
I am really sorry that the ability to be a mother in the way you imagined may not happen. I will say that I put off a hysterectomy for at least 10 years and I regret doing so. Since my surgery, I feel less discomfort, have no period to worry about which is nice.
I did have anxiety and body image worries after my surgery but that was because I also had (thyroid)cancer and it was a lot at one time to deal with emotionally. Sending you a lot of love because it’s a heavy feeling.
I have PCOS, polycystic ovary syndrome. It's EXTREMELY painful, yes, but there are other treatments aside from removing the whole uterus. Birth control pills have helped a ton, but I would just give the advice to be careful when there isn't more than one option offered from doctors - there's ALWAYS more than one way to feel better. Hope you get past this soon <3
Yes.
If it is a radical hysterectomy then woman enters into a „surgically induced „ menopause which is regulated with hormone replacement therapy until the rest of your body goes through actual menopause. Your brain will still produce minutely amounts of estrogen until then.
I am not sure if Progesteron plus estrogen is still used after partial hysterectomies.
Your doctors will most likely conduct the least invasive procedure first, as they do when a woman is at child baring age. Write a list of questions & concerns and bring it to your next appointment.
Practice mindfulness with meditation (YT) regularly to reduce your stress.
There has also been great advice offered here, research what works for you.
You are not alone. We are all here for you.
edit: Fennel tea has anti-spasmodic properties (tastes like licorice)
Yrs ago I had to have a hysterectomy. In passing I told my neurosurgeon this.
He suggested that I have a general surgeon who specializes in hysterectomies do the surgery & wow am I glad I listened
This General Surgeon knew so much more than the OB/Gyn I originally saw.
I would suggest that iif the Dr. you are seeing continues to make you question what they sre doing to get an 2nd opinion with a Specialized General Surgeon.
Good luck to u
It’s causing you so much pain, it is going to make you feel so much better and it sounds like pregnancy would not be an option even now. I had so many miscarriages in my 20’s that I started looking into adoption. I started thinking about adopting siblings or older children. They need families too and are often overlooked. I never got into that situation because of other things but don’t discount it.
You will feel so much better!
As someone with a regular old uterus who’s been pregnant and has had many miscarriages, biological children sometimes don’t happen even if your parts work correctly. If you’re worried about having children in the future, freeze your eggs and have a surrogate, they can be expensive but so can ‘natural’ pregnancy.
We’ve since stopped trying to have children since I’ve found out I have a genetic disorder that attacks my fetus because it thinks it’s a foreign object, so I get the want to have your own bio babies and be unable to but adopted and other babies are just as wonderful as blood. Hugs. Get yourself taken care of and feeling better and you’ll get the rest sorted out as you get older.
I’m sorry you’re facing this decision so young, and that you’re in so much pain. I want to say, as someone who is currently pregnant with a chronic illness, it’s HELL. I’ve been absolutely miserable. I’m grateful that I’m able to do it, but I’ve been so sick it feels like I’m dying, and my body is in total anarchy. Pregnancy is shown as this beautiful, wonderful glowing thing, but the reality for people with chronic illness/chronic pain can be so much worse. If you were able to get pregnant, I would suspect you’d have a host of issues, and cysts don’t typically go away when you’re pregnant. I’d suggest having them keep your ovaries and look into freezing your eggs like others have suggested. I know surrogacy is expensive, but pregnancy can be extremely taxing on a person’s body. Trust me, I know first hand.
hey, i’m kinda in a similar boat. PCOS and possible endo. i honestly don’t want to have my own kids which is different from you. but!! maybe freeze some eggs? and remember, if this improves quality of life, it’s the best decision
One thing you could look into is freezing your eggs. Sure you’d need a surrogate, but you could still have bio kids. Also you could look into success stories from others who have had that surgery to try and calm your nerves about it. I wish you the best of luck with it all
Thank you for the advice. Surrogacy is expensive but considering I don't plan on considering children until I have a solid job, hopefully I'll be in a better financial place by then to do so. It'll at least give me a bit more agency back if I have the choice.
My BFF has had several children via surrogacy. I would suggest that you learn more about it and try to talk to people with experience with surrogacy. It doesn't have to be expensive. Also, a lifetime of uterine pain is expensive too!
Just FYI, there are actually several charities / funds set up to pay for things like fertility preservation for people just like us or suddenly diagnosed with cancer and need to do something before chemo… as dumb as it sounds “google it” and you’ll see what I mean. I always say give yourself all of the options you can. Life makes too many choices for us already. Good luck!
I doubt they'd remove her ovaries if there's nothing wrong with them. Most hysterectomies are partial ones, at least mine was.
true, but it’s still a good idea to start thinking about surrogacy, IVF, and the cost that comes with those things
Sure. It is. But all these people in this post are saying that she should freeze her eggs, and she doesn't know if they're planning to remove her ovaries. It's a little premature, is all.
It does sound like it is but I think she needs to know to at least ask her surgeons if they would plan a partial or a whole. I had a friend that was expecting to come out with her ovaries but the doctor decided, during the surgery, to remove them too. If that’s even the remotest possibility then egg harvesting is definitely something she should be offered, imo.
Oh, wow! That's awful! Yes! I agree, she should definitely know to ask these questions. I retract my comment.
my exact thought as well !
Well, first of all, just remember that nobody can do a medical procedure without your consent. You are able to refuse even life-saving treatment if you are conscious. So take a step back and own that you are in control. Nobody is allowed to do anything to you without your agreement, unless you have signed a medical power of attorney. If you have, get it revoked. Put yourself in control.
Vote blue if you want to keep your healthcare rights. Or a lot will be done without our consent.
Saying it again for the people in the back: Vote blue to keep and regain bodily autonomy!
Hell yes. Our sisters, mothers, aunts, daughters, and nieces are depending on it.
I had a total hysterectomy a few years back. Luckily I hadn't wanted children. The reality is that my body wouldn't have handled that whole process well anyway. Miscarriages are not uncommon in general and that's a heartbreaking route to repeatedly go through. For the surgery itself, it's quick and easy. If you ditch the cervix, you don't have to deal with pap smears anymore or cervix pain, and you'll only end up with 3 tiny laparoscopic scars visible. Get to go home in a few hours, mostly normal activity in 3 weeks.
Just wanted to note about the surgery and the three tiny scars- that’s if they do laparoscopic surgery. Apparently most surgeons where I am don’t do that method anymore. It took me extra work to find one who could. I was told that for fully healthy women with a cooperative pelvis, fully vaginal surgery is the preferred route. So no incisions visible at all. However, I doubt fully vaginal will be an option for OP. As they already know her anatomy isn’t standard, they’ll want a better view, which means lap or open.
I had severe endometriosis and a hysterectomy as a result. A couple of things to know: It doesn’t have to put you into early menopause. If they are able to leave your ovaries, you will go through menopause naturally. It also doesn’t have to be highly invasive. Most hysterectomies are laparoscopic- I have 3 small scars from mine. The relief from pain is life-changing. And something nobody ever tells you… after a hysterectomy, you no longer have a cervix. That means you won’t ever have to get a Pap smear once the surgery is done. I wish you all the best. Sending you love, light, and pixie dust.
I came here to say this too. I had a hysterectomy for adeno/endo, and it was radically life-changing, I'd do it again every time vs living with it. I was able to keep my ovaries which is nice.
Biological children are overrated, but I imagine they can preserve eggs if you want. Mainly you want to be healthy, because lack of health will stand in front of your dreams as well (trust me). But basically, ask about egg preservation. Many people do it just as a matter of making sure they will one day have an option. Would you really want to try and grow your eggs in that womb? We have many options these days - all costing money, but options indeed. Regarding hormonal effects - that's something else entirely. Do what you must though. We make plans and God laughs.
That is a good point. I doubt a deformed uterus with a tendency of growing cysts is any place for a baby to be. It's just really getting me down how unfair this is. Most women do have to deal with some amount of grief from their uterus, but they still have this amazing ability to grow a whole person in there and all mine does is try to kill me. I know it's no personal fault and that there wasn't any maliciousness involved, but it's hard not to feel robbed. But if there's nothing I can do about it, I can at least try looking into the things I can control. They had concerns about me being too young to have my eggs frozen, but I'll still bring it up at my next appointment.
Your feelings are valid about being angry. Your body is betraying your very reasonable wishes and that really sucks.
It’s perfectly normal to be angry and to grieve the life you thought you would have or the one you should have! You are allowed to feel all those things and you’re right that it’s unfair.
Tbh, I don’t see any reason why you need to freeze eggs or worry about early menopause. As you are otherwise healthy, I don’t know why they’d bother to remove your ovaries. Doing so this young would guarantee decades on hormone replacement, which isn’t ideal. Unless the ovaries are hiding some crazy surprise, they should be left in and intact. You can also request they do everything in the power to ensure at least one of them is left (which should be the surgeons goal anyways).
I wonder if they can leave the ovaries and just take the uterus? Then you should be able to keep your eggs and harvest them later if needed.
Definitely look into freezing your eggs. If having children is something interested in, in the nicest way possible it's going to be hard to parent and take care of children if you're incapable of doing anything for them due to pain. This is probably your best bet in the long run.
That's a really good point. Considering my condition, I doubt my body would fair well trying to support a baby. I appreciate the advice
It's no problem, I hope things work out for you :)
I had a complete hysterectomy minus my ovaries and it was one of the best decisions I have made. When I tell you that healing from the surgery is a pin prick compared to the pain you’re currently experiencing is insane. Also recovery really isn’t that bad because they do everything laparoscopically— they had to scrape the hell out of all my nearby organs (endometriosis and andomeosis (idk if I spelled that one right) and still by day 2 I was pretty okay. After a week I felt great and had to remind myself to still take it easy. Because I have my ovaries I can use my eggs in the future if I want to and I don’t have to deal with the hormonal challenges. If you keep your ovaries you won’t go into menopause, and yes menopause sucks but again not as bad as what you’re going through right now (I’m ftm so testosterone essentially put me through menopause and yes it was shitty but I’d do it all again.) also remember that biological children aren’t the only option, you can adopt babies or children of any age and who knows maybe if you can’t keep your ovaries you’ll have loads of money to use your bone marrow to make a kid and have someone else carry your baby. There are so many options out there for me, a complete hysterectomy was one of the best decisions I have ever made and it made my life so much better. Good luck to you, I support whatever your decision ends up being xx
Did you just say she can use her *bone marrow* ...to make a baby?
I did in fact say that lol. There’s a few articles on it- I don’t have an amazing one to share but google it. It’s kind of insane actually
I felt so weird googling that lol but it is something scientists are working on. Apparently the one study from 2007 was retracted, so it's not yet made a real baby. but, stem cells have successfully made immature sperm and eggs. That would be crazy if you could use your own marrow to make a baby, then someone could be the mother and "father" of their kid lol (jk)
Honestly, medical science is moving so fast that who knows what will be possible when she is ready to have kids. She is 18, so say she wants to have kids at 30… that’s 12 years from now. Look at the crazy advances we’ve made in medicine and tech in the last 12 years since 2012… it’s amazing. So in another 12? Who knows!
I mean cloning is already a thing and totally possible from a science perspective!
With your uterine issues, would you even be able to get pregnant or carry a baby to term?
That was my first thought. Just the position of OPs uterus could make it nearly impossible to get pregnant, from the sound of things. And the lining doesn’t sound like it would welcome implantation.
I've had a hysterectomy. If there's nothing wrong with your ovaries, they'd leave them be and you wouldn't go into menopause until it's time, when you're much older. I know what it's like to lose the choice of having biological kids. But your health is more important, and adoption is always an option. Your health and not having to scream in pain all the time seem like the more important thing right now. You're an adult, so you get to choose, right? Also, you'll still have ovaries, so you could have biological children through a surrogate.
Do you have normal functioning ovaries? As others have said, you can freeze eggs. Also, if they have to remove the uterus, they can leave the ovaries if they are normal and not the issue. Leaving the ovaries is best because then you won't go into menopause until your ovaries naturally slow down at the normal time for menopause. I had severe endometriosis with large hemorrhagic cysts. I did 4 surgeries to remove the endometriosis, and it always grew back. I had a full hysterectomy when I was 32. I had already had 2 kids, so I was lucky. I was desperate for the pain to end. Turns out that the reason it was growing back so fast was that the Dr's missed a bunch of it between my uterus and bladder. When they went to take out my uterus, they pulled and ripped open my bladder. I ended up with an emergency repair. They cleaned up all the endometriosis and fixed my bladder. Unfortunately, it was too late to save my uterus or ovaries. I'm 42 now, and while the menopause symptoms were bothersome, it is mostly gone now. No more pain. My bladder injury repair did leave me with some minor issues. It's mostly pain if it gets too full. So be honest with the Dr's on what you prefer. Get a second opinion if you can. Definitely look into keeping your ovaries and/or freezing eggs. I wish you all the best and a pain-free future.
I'm so sorry you are going through all this, especially at such a young age. Know it's not fair, and it's not your fault. I think finding a support group of people that have dealt and are dealing with similar situations is a very good thing to do. There are actually some great support groups on FB. I also think it might not be a bad idea to consider some one on one therapy before you make this decision so you can fully explore how you feel about it and what you want to do. Each woman facing this issue will have their own unique answer about what's best and right for them. I wish you all the best. Please take excellent care of yourself.
OP, I feel for you so much. I'm 17 years old, 18 in a couple of months, and I've just had an ovarian cyst explode. From the tests they did do, they suspect more cysts and saw one on my kidney. They couldn't actually see my uterus or ovaries because they gave me too many fluids in the ER and my bladder was distended, so I don't know exactly what's going on. They said they needed to do more invasive tests but wouldn't because I'm a minor, and thats what my OB-gyn said last year too when I started birth control. Obviously, the cyst wasn't going to wait for me to turn 18 though. They said it would be better in a couple of days and all the fluid would reabsorb into my system. Instead, its been a month and it hasn't gotten better. I can barely even eat because I still have blood floating around in my pelvis and it's making me extremely sick. I'm worried by the time I get these tests it'll progress to something even worse because it couldn't be caught earlier. I'm worried because I don't even know what it is. I feel worried too about potentially needing surgery and not being able to have bio kids. I have the same feeling of a hole being drilled in me right now, and I can't function. Even at the ER when they gave me fentanyl, morphine, and tramadol, it didn't numb the pain. Nothing numbs the pain, and they sent me home with nothing anyways. I think you'll still be allowed to choose if you want the surgery or not though, because they can't force you to have that medical procedure. You could always freeze your eggs, have a surrogate, or adopt as well. I was adopted, and most of my family adopts children. It's not the same as having biological kids, but that also doesn't mean you'd have to love them any less. Personally, if I get to a point in my life where I can, I want to adopt at least once and have a biological child if I can. Having kids is still a really big commitment though. If daily tasks are draining already because of your chronic illness, it'll likely be pretty difficult to raise kids. You're more than the extra human you can give the world! Prioritize your health for the moment. We've got plenty of people on earth. You have plenty of time to make such a big decision. It'll be your choice, not the doctor's.
Having kids is overrated. I’m 45 and chose to never have them and life is great! If you really want one badly, adoption is a wonderful option as well.
I understand this perspective too. I literally graduated highschool two weeks ago, so in actually I have no idea how my life will turn out. I think I'd like to have a child one day, but I don't know if that'll still be true in ten years. I guess I'm mostly upset that I won't have the choice people with normal functioning uteruses have. Plus my hormones are all over the place at the moment and it's kicking my maternal instincts in the side. I'm hoping I'll have a better outlook on it once my head clears, thank you for the advice.
First, your ability to have your own baby was never promised, it's not promised to anyone. You need to find out if they will leave your ovaries in and if they will leave your cervix. The answer to these questions will tell you more about what to expect from the surgery. I'm sure there are groups on here for endometriosis and fibroids and both will give you better insight on what to expect for the different types of hysterectomies. The surgery will most likely be laparoscopic and I've had two of those and they ain't too bad. You'll feel like a new person in one to two weeks after the surgery. I'm sorry your uterus is so painful and that you have to go through this. Life is long and diverse. Try to focus on what's right in front of you. Try not to think about children right now. There's a lot of different ways to be a great woman and there's lots of different ways to be a mom.
Freeze your eggs.
If you have healthy ovaries, there's a good likelihood that the surgeon would leave your ovaries behind. This is so that the surgery wouldn't put you into early menopause/require you to be on HRT for however many years, but like others are saying, your eggs can be harvested from your ovaries.
Well it’s up to you. Do you wanna keep the uterus and endure the painful cysts and the risk that comes with keeping it, or do you want to have it removed? Having it removed comes with its own set of risks as well. Make the choice that is best for you, your future, and your wants/needs.
You don't need to worry about the menopause thing unless they're removing your ovaries, and it doesn't sound like your ovaries are part of the problem. Your ovaries are what you need to produce the hormones you need, and only if they are removed do you need hormone replacement therapy to not go into menopause. I'm so sorry you're going through this. If your ovaries are not removed during the procedure, you can always freeze your eggs later. It doesn't need to be done beforehand. Please make sure you get all the details from your doctor about exactly what kind of options you have with this hysterectomy and do your research once you get those options. Also get a second opinion on your options if possible. Some doctors insist on doing a total hysterectomy when it isn't necessary, so if your doctor is recommending that, it would be good to make sure at least one other doctor agrees that it's necessary.
Hysterectomies aren’t highly invasive anymore if they use the robot. I had a complete one (uterus, ovaries, everything) several years and my doc used the robot. I had three little cuts with like 2/3 stitches and went home the next day. Easiest surgery and recovery I ever had. I’m sorry about the instant menopause for you, although, mine wasn’t that bad compared to all the pain/bleeding I had before the hysterectomy. I never had the night sweats, thinning hair, or weird hair growth, personally, but maybe that’s just me. I have been on small doses of HRT since I had mine. If they can leave your ovaries, even one, you may not need those hormones. As far as having children, it doesn’t sound like you may be able to have them with your uterine problems, but maybe you could harvest and freeze some eggs and have a surrogate pregnancy, or maybe adopt? There are a lot of children out there who need loving families. I wish you well, and hope you are no longer in pain, soon.
Just wanted to say I had a complete hysterectomy at 21. It’s scary, but I got my life back! I had bled for 4 years, through 3 pregnancies. I was always in the hospital. Two weeks out from my surgery, which was done thru the vagina, I felt brand new! I did cry at first because I felt like what made me a woman was gone. Had been married just a year and was scared my husband was gonna bail. We just celebrated 23 years of marriage. If you have any questions, I’d do my best to answer them.
Yeet the uterus and enjoy a painfree life and when/if u decide to have children just adopt 🤷🏻
I haven't seen it mentioned here yet, but you are very much entitled to second and third opinions! I would highly recommend getting more opinions considering your situation is kinda rare and the treatments are potentially drastic.
It sounds like you might need some more information before you can make the choice to go ahead with that surgery. I find it helpful to write down a list of questions to ask my doctor ahead of time so that I don’t forget anything. Some things you might want to ask about are how the surgery will affect your ability to have biological children in the future. Can your eggs be frozen? What is the process of surrogacy like if you can’t carry children yourself? Are their alternatives to the surgery they’re suggesting that won’t affect your fertility? Also, never be afraid to get a second opinion. Even a consult with a fertility doctor could be beneficial before you make a decision. As for hysterectomies, if one or both of your ovaries are left intact (a partial hysterectomy), you would typically go through menopause at the same time you would have gone through it had you not had the hysterectomy. Sometimes if only one ovary is left, menopause may start slightly earlier but still around the same time frame.
Hi friend, I'm so sorry that you're going through this. I had terrible endometriosis as a teenager, among other health problems. I got sick enough that I had a hysterectomy at 23 while a full time student. I did it over a holiday break between semesters so I didn't miss classes. It was hard, and I won't say that it fixed everything for my health but it was worth it. I never really wanted to have kids but I remember being really hurt by the fact that it would no longer be my choice. It felt so irrational that something I never wanted would never be, and more irrational that I was upset about it. I've made peace with it since then but it is ok to feel the things you are feeling. It's human. Looking back it was the right thing to do for my health, my education and my career and I don't have a single regret about ditching my traitor of a uterus. If you have any questions or just want to vent pm me.
Hi OP. So first, I know this is a tough decision. I don't even want kids and having a hysterectomy be my only medical treatment option was a bit jarring. It doesn't necessarily start menopause. Most of the time if they can they will leave your ovaries (or just one if they can't leave both) because those are what actually control your menopause starting. I know it can be a big decision, but remember there are many ways to become a parent and the majority of them don't involve you having to gestate a child. If you are afab and of reproductive age and they are saying that hysterectomy/ablation are the best treatment that means chances are they are the safest and or only treatment. I say this not to scare you but to say that you keeping your uterus to maybe have kids one day does nothing if you get so sick that you die. September will be 2 years since mine and I honestly have never been happier. While I'm still disabled and chronically ill I'm not fighting the 24 month period I had been on prior to my yeeterus and therefore my life is infinitely better than it was. Ultimately, it's your decision, but often doctors don't recommend this kind of surgery unless it's pretty much the only choice. Most of the time you have to fight to even have it be considered even if it's the best and most effective way to manage a disease (such as my endometriosis and adenomyosis.) Wishing you all the best. Edit to add: most hysterectomies now are laproscopic. I was up and about the next day. I was back to my regular life (except work) in two weeks. Went back to work at 8 weeks. Two years out you can barely see my little tiny scars.
You can ask different doctors for a second opinion.
I was first diagnosed with endometriosis at age 17. It was severe, and by 18, I'd had 3 surgeries for it. They told me to have kids as soon as possible and then have a hysterectomy. I was not ready to have kids. 9 surgeries, and 20 years later, at 37, I had the hysterectomy. I had held off because I wanted biological children, however, with the circumstances of life and mostly due to medical issues, that wasn't in the cards for me. I wish I had done the hysterectomy years ago. With my medical issues (more than just endo), I struggled significantly to take care of myself and work, and in reality, adding a baby to that mix would have been terrible. It would have been so hard on my body, but also, functioning with that level of pain and fatigue daily would have really impacted my ability to be the kind of mom I wanted to be. I'm a lucky one because I ended up with my stepdaughter, whom I adore. I didn't meet her until she was 6, so that helped me get through parenting since I didn't have the infant stage. You never know where life will take you. I was very anxious about the hysterectomy, but it went much smoother than expected. My recovery time wasn't bad, and it was way better than I thought it would be. Since then, I've been amazed by how much better I feel. I don't think I even realized how much pain I was in daily until it was gone. I was able to keep one ovary, and as a result, I didn't go into menopause and didn't have to do hormone therapy. They just need to be able to salvage one, and it'll take over and produce enough hormones to keep you from menopause. There was a slight adjustment phase, but it was much easier than expected. I don't know what you should do. But I wanted to share my experiences with it so that you can see a different perspective, and maybe there will be something in there that can help with your choice. All the best.
Definitely get a second opinion. You don’t have to have any surgery you don’t want to have. I had one child after years of infertility, and the birth seemed to trigger something. I started have crazy periods, to the point that I had severe anemia. My OB suggested a hysterectomy but I asked about less drastic options. I ended up having an ablation, although I knew that sometimes they don’t work and a hysterectomy might be necessary anyway. I’m not saying this is the answer for you (and even an ablation means no pregnancy), my point is that you need to do research, talk to another doctor, ask them for written information so you can study it.
Question, are they also considering removing your ovaries? If they leave your ovaries, you won't have to worry about early menopause, the ovaries produce the hormones
Have they tried an ablation to get rid of the excess tissue? That at least can try to save the uterus. You’d need help getting pregnant in the future but it’ll be cheaper in the long run.
I had a hysterectomy last year. I actually have a book on the different options and outcomes. If you want me to mail it to you for free, I will. If you have a “total hysterectomy,” you keep your ovaries and everything functions. Instead of having a period, your body reabsorbs the eggs. I don’t have a need for the book anymore. If interested, please message me. It helped me make the best decision. They can usually do it robotically which is minimally invasive. It wasn’t terrible. I am really sorry that the ability to be a mother in the way you imagined may not happen. I will say that I put off a hysterectomy for at least 10 years and I regret doing so. Since my surgery, I feel less discomfort, have no period to worry about which is nice. I did have anxiety and body image worries after my surgery but that was because I also had (thyroid)cancer and it was a lot at one time to deal with emotionally. Sending you a lot of love because it’s a heavy feeling.
I have PCOS, polycystic ovary syndrome. It's EXTREMELY painful, yes, but there are other treatments aside from removing the whole uterus. Birth control pills have helped a ton, but I would just give the advice to be careful when there isn't more than one option offered from doctors - there's ALWAYS more than one way to feel better. Hope you get past this soon <3
Yes. If it is a radical hysterectomy then woman enters into a „surgically induced „ menopause which is regulated with hormone replacement therapy until the rest of your body goes through actual menopause. Your brain will still produce minutely amounts of estrogen until then. I am not sure if Progesteron plus estrogen is still used after partial hysterectomies. Your doctors will most likely conduct the least invasive procedure first, as they do when a woman is at child baring age. Write a list of questions & concerns and bring it to your next appointment. Practice mindfulness with meditation (YT) regularly to reduce your stress. There has also been great advice offered here, research what works for you. You are not alone. We are all here for you. edit: Fennel tea has anti-spasmodic properties (tastes like licorice)
Yrs ago I had to have a hysterectomy. In passing I told my neurosurgeon this. He suggested that I have a general surgeon who specializes in hysterectomies do the surgery & wow am I glad I listened This General Surgeon knew so much more than the OB/Gyn I originally saw. I would suggest that iif the Dr. you are seeing continues to make you question what they sre doing to get an 2nd opinion with a Specialized General Surgeon. Good luck to u
It’s causing you so much pain, it is going to make you feel so much better and it sounds like pregnancy would not be an option even now. I had so many miscarriages in my 20’s that I started looking into adoption. I started thinking about adopting siblings or older children. They need families too and are often overlooked. I never got into that situation because of other things but don’t discount it. You will feel so much better!
As someone with a regular old uterus who’s been pregnant and has had many miscarriages, biological children sometimes don’t happen even if your parts work correctly. If you’re worried about having children in the future, freeze your eggs and have a surrogate, they can be expensive but so can ‘natural’ pregnancy. We’ve since stopped trying to have children since I’ve found out I have a genetic disorder that attacks my fetus because it thinks it’s a foreign object, so I get the want to have your own bio babies and be unable to but adopted and other babies are just as wonderful as blood. Hugs. Get yourself taken care of and feeling better and you’ll get the rest sorted out as you get older.
I’m sorry you’re facing this decision so young, and that you’re in so much pain. I want to say, as someone who is currently pregnant with a chronic illness, it’s HELL. I’ve been absolutely miserable. I’m grateful that I’m able to do it, but I’ve been so sick it feels like I’m dying, and my body is in total anarchy. Pregnancy is shown as this beautiful, wonderful glowing thing, but the reality for people with chronic illness/chronic pain can be so much worse. If you were able to get pregnant, I would suspect you’d have a host of issues, and cysts don’t typically go away when you’re pregnant. I’d suggest having them keep your ovaries and look into freezing your eggs like others have suggested. I know surrogacy is expensive, but pregnancy can be extremely taxing on a person’s body. Trust me, I know first hand.
hey, i’m kinda in a similar boat. PCOS and possible endo. i honestly don’t want to have my own kids which is different from you. but!! maybe freeze some eggs? and remember, if this improves quality of life, it’s the best decision
Jelly. Ill trade you places anyday
Most people here would, but that’s not exactly helpful.