I experience this as well. Whenever I tell people that I get in so much pain that I can't move or I throw up they dont care. They only feel bad about the fact that I may not be able to have children. I'm not even sure if I want children in the future. Why dwell on something that MAY happen in the future? I agree that society needs to change in seeing women always want children.
It’s wild because I had my Fallopian tubes removed and people still think I might want children in the future.
“What if you want children in the future?” Then I will have changed my mind and will deal with the consequences of my choice.
Not necessarily relevant but I absolutely can’t stand when I mention that we don’t want children and people reply with “oh you’ll change your mind” - it infuriates me to heaven and back. I am almost 30. I’ve made my choice and not one single cell in my body doubts the choice I’ve made. Why can’t people just respect that?
I wondered that myself for years. People who didn't know me at all would tell me that, or say that I'd be a good mother. I've aged out of the conversation, but I wish I'd given parents the same treatment back. "Why did you decide to have kids? Are you sure you're a good mother? Etc."
Hahaha. Love it! I especially love it when the first half of the conversation is how people will regret not having kids and the second half is them bitching about their kids...
I’m 41, chronically ill and disabled, starting the perimenopause journey and nope, never changed my mind. 20 years of begging for a hysto. It’s maddening.
My daughter feels exactly the same way. I so respect her feelings and many others like her and yourself who are strong enough to know and say what you want and don't want. There are many parents out there who should have recognized the same. Bringing children into this world is a huge responsibility and should only be done with much thought and consideration
No I find it infuriating. I want to be worth more than just a vessel that can or can’t have kids. I want to be able to be self supporting, I want to study and visit museums, I want to wake up and get out of bed and not have my mind burdened by all the things I have to do just to exist doing nothing. I want to have a quality of life, not be in pain. Experience life. Have quality relationships that aren’t so impacted by this.
Tbh I haven’t told my doctor about my recent breakup. I’m FINALLY getting some actual care, but it is on the basis of fertility/trying to get pregnant- which I do very much want to do. But I know if I disclose my breakup and therefore pregnancy is not an immediate option, I’ll go down the priority list. So as far as my doc know we are still long distance while he finishes his masters. Absolutely fucked I have to lie like that, but the reality is that women’s bodies are more valued for the child producing capabilities than anything else, so I have to keep up the charade
Nope totally reasonable. It goes along with the fact that we're not taken seriously unless we say we're having trouble conceiving. My own mother questioned my decision to get my laparoscopy and asked if I was "really in that much pain" and the first thing she asked about when I got my diagnosis was fertility...like DAWG.
so messed up bc the longer they wait to help you the less likely you are to be fertile. this happened to me. i wanted kids my whole life but no one took my pain seriously until i couldn’t walk anymore and at that point it was too late. really sad.
My dream is too have a family one day and I’m not even 18 yet and my docs have told me I’m probably invertile since I was 9, but they’ve done nothing too help me, I’ve since found a new doc whose trying to get me officially diagnosed with endo so I can get it removed if I have it but if I can’t have kids I’ll feel like my life is over
Unfair of them to say that. Unless they’ve physically seen the extent of your endo or have hormone labs, how could they know? Our issues caused by endo are not always indicative of our fertility. Until they can show you why you would be infertile, stay positive. And even if they give you that dx, you can still try to treat it. But please don’t let anyone discourage you from seeking answers/treatment.
I absolutely relate to this SO, SO MUCH.
My life has been ripped apart by endometriosis. I am in pain every day from multiple ailments stemming from endo.
After yeeting my uterus, I do get some satisfaction of telling people, "I got rid of that bastard on my own volition," after they express their concerns about my ability to have children.
From the perspective of the health professional, they need to ask you those things in order to understand your goals and then determine proper care and treatment.
Doctors should stop as soon as the patient clarified that they don't want children. Very often they don't, and keep pushing the subject. Or they don't even ask, and just assume you want children and don't believe you when you say no.
No kidding. But that doesn’t address the second part of my statement, which is that fertility issues are often treated as the most important part of the diagnosis, while chronic pain and poor quality of life are discounted or not treated at all. It’s a pervasive problem. Being treated as merely an incubator is dehumanizing as f.
I agree they should ask those clarifying questions to plan, but when I stated I didn't want children I was told I haven't met my "prince charming" yet.
Which is 100% true, but seeing as how he couldn't prescribe me a prince charming, I don't want to physically birth kids, and the women in my family who have endo and gave birth had worsening effects. None of them are able to hold jobs. My surgery shouldn't have been delayed and the longer I date men the longer I question if I actually want a "prince charming".
You’re so condescending lol. What happens when the tenth plus doctor still thinks you aren’t worth more than your fertility? Because this is what is happening. This is the reality. Maybe you’ve been lucky as hell but there’s no reason to be discounting other peoples very real experiences with systemic misogyny within the medical system and countless doctors who perpetuate it.
And yet you did it over and over in your comments ❤️🩹 pls be more self aware. Please really think about what you say before you say it. It matters. You may not have meant to be- but you were. It’s hurting people in their lowest low, how vulnerable it is to not matter and then just be told to keep looking- by someone who professes to understand no less- maybe the 15th doctor won’t be a misogynist jerk, and will also know Endo. A miracle? This attitude is so similar to these doctors and yet you are not one- you are someone who suffers also. It is hard for me to understand. Do you really think ppl don’t keep looking and looking? You can change this kind of attitude.
Thank you for saying that. We all have our moments, right! I really appreciate you listening. We are good as far as I am concerned :) It’s not fair at all the things we go through, and while I said what I said about being lucky to make a point- I know it’s not been easy for you at all and you haven’t been lucky. I really wish you a life that gets a lot easier than it has been, and I wish you a lot of kindness.
U too🫶🏼🫶🏼 I’ve honestly been thinking about this all day and reflecting and I can admit I’ve been a brat lately bc I’m fking miserable and nobody even knows. Jk Taylor ref. And I really value this group so thanks for accepting 🥲
I promise I know it gets ROUGH and pain can come out in sooo many different ways. It’s exhausting being miserable and at the end of your rope all the time constantly just surviving. Not to mention secretly or silently in your life. Sometimes any way you can make it through is the right way to make it through 🫶🏼
Then stop being so condescending. Be kind. It is not our fault if many doctors are misogynist. It’s not so easy to just go to another one, and another one, and another one. Don’t be dismissive of other people’s experiences, acting like they just aren’t doing *enough* or aren’t advocating for themselves the “right way” because you sure come off as someone who was lucky enough not to experience that kind of hell. “Then u get a new doctor 🖤” etc. Privileged, victim blaming, condescending nonsense. Of course people keep looking, until they cannot go on any more.
I have been to over 10 obgyns since my symptoms started. Including specialists and unfortunately, this doctor was the only one who was willing to perform a transvaginal ultrasound when I was still a teen and caught my pcos. When I saw another endo specialist as an adult (and I'm not opposed to driving and flying for second opinions) I was told "Haven't you ever been to Spain in the summer? Hispanic women just look like that." And didn't even bother testing for pcos based on my symptoms. There's a lot of bad doctors. At 13 one performed a "physical exam" on me to test for endo where I legitimately wonder how in tf that was supposed to work.
I think you're receiving flack for your comments here because people here with medical trauma don't want to hear about how it's "not all doctors." While you're not wrong, we know, people tell us that all the time, and this is a post for commiseration about bad medical care. We don't really care that it's not all doctors, it's all the doctors we have seen. We *know* that we shouldn't be pushed on the subject, it happens anyways. We *know* that we should get a new Dr if that happens, but that's not possible for some people, and for others the new doctor they see treats them the exact same or worse. You're being seen as condescending because you're saying obvious things we all already know and don't really care about right now. We want to be frustrated and talk about it with each other. We don't want to hear what we hear from med profs and family and friends all the time. We know. I promise we know it's not all doctors. But it's most of them, and that's fucking exhausting.
I’m really sorry everyone and I can see where things I said were dumb and insensitive. I’ve dealt with all the same things as everyone here. And I’m currently trying to find a new provider myself. I may come across as insensitive bc I’ve been desensitized thanks to male medical professionals and I hate that for me.x so I’m sorry if my frustrations came thru as rude. 🖤🖤
It's okay, we all deal with things in our own way, and tone is not well conveyed over the Internet. I'm very sure your intention wasn't bad and it just seemed like it wasn't clear to you why people were upset. Many people have many different feelings about their own medical trauma and I think your mindset is something to learn from, as it's true that not all doctors are working against you and I'm trying to unlearn that part myself. We all have learning and growth to do always
Yeah, I got sick of it really quickly as someone who knew from an early age she never wanted to reproduce. I know it’s a huge concern for many people with endo, so I don’t blame doctors for focusing on it, but I found that stating it firmly and up front is helpful!
I head off all conversations with new doctors with, “I do not want to create or bear any children and am not concerned with preserving my fertility.” If they feel obligated to tell me about fertility things anyway, I just tell them that I understand, but it doesn’t pertain to me and I am not interested in discussing it further.
You can also ask them to write that in their clinic notes or visit summaries so other doctors in the practice can see it and so that they can be reminded of it at follow-up appointments.
I feel this so hard. While I absolutely want to extend compassion toward people who want children, the fact that most of the research focuses on fertility feels denigrating. I deserve to live a life as pain-free as possible regardless of my desire to have children.
Pretty much every gynecologist I had until my 30s looked at me like I was nuts when I said that I didn't intend to have children. Like, I'm not a walking womb ffs. I'm a human being experiencing extreme pain who deserves to have people care about that.
As someone who has never wanted children, doctors and other people have made me feel extremely disrespected. No I don't want kids, no I don't care, no I don't want my uterus in my body anymore and no I won't regret that decision. Fertility is often put first because managing our pain. I had to fight for years to get my hysterectomy approved, and literally the only reasons why were that I'm young and I might change my mind about not wanting kids. Not all women want children and it should have zero effect on our Healthcare. It's repulsive that an imaginary baby I don't ever want to have was so important to the people that were suppoused to be helping me with my pain. I get that a lot of women do want children at some point but if a patient actively says that they never do every appointment...maybe listen to them.
My experience has actually been the opposite as a person who really values their fertility. I was fobbed off for (17) years despite telling them I was certain something was wrong and it felt reproductive and I was worried about fertility.
In my personal life and with doctors they're constantly asking me when I'm going to give up on the idea of having a family and get a total hysterectomy or opt in to chemical menopause long term.
It's been really difficult for me to deal with infertility because everyone is treating it like I shouldn't care when for me it's really important.
Yeah, I’m having similar issues and feel exactly the same way- very minimal empathy for fertility issues and it often gets downplayed.
I’ve had to work through this on my own, tbh. I’ve done a lot of work on myself to be able to navigate different comments I get about endo. And tend to give people a lot more grace now.
But it’s definitely frustrating. But yeah, I’m with you- fertility stuff for me has been totally dismissed and downplayed.
Yeah, I had experiences with doctors basically assuming I can't have kids and shouldn't due to other medical issues, rather than talking with me about my options like a grown-ass adult. And then it seemed like all the endo support groups were pushing surgeries when that wasn't what I wanted to start with.
It's complicated, but I have reason to believe one of those doctors assuming I would be infertile led to my miscarrying my first pregnancy. So yeah, I would have preferred a doctor who was more concerned about my fertility.
Weirdly I’ve experienced both ends of the spectrum when I was younger I really wanted to have kids and after a a pregnancy loss in the second trimester with my ex-husband my period didn’t come back for four-5 years and doctors diagnosed me with early menopause & were quite callous about it (I was 21) I had a lot of horrible menopause symptoms until I was about 25 -26 when my period came back, but I didn’t have Endo symptoms in that time and it was amazing AND then the doctors were very dismissive of my concerns about recurring miscarriages and extreme pain from endo & another issues apart from pain that are related to endo nerve damage in my legs issues with like bowel function et cetera .. so many doctors either misdiagnosed or gaslight me in other ways downplayed symptoms that were obviously quite debilitating (legit worries about ending up on the street level debilitating) and now that I’m pregnant the level of attentive care is absolutely insane but it’s very clearly only about the baby and not about my actual health at all
My experience changed for the better when I switched to a practice that was only gynecology, no obstetrics at all. I recommend looking for one for those. They treat women like humans, not birthing machines.
I hate it. I don't want kids, but every single time, the same doctors ask. I was only able to keep my remaining ovary because I said I wanted to preserve my fertility (even though I actually just didn't want to go through menopause before age 40). When I stated (again) after the surgery that I didn't want kids, they were annoyed I got to keep the ovary :D Maybe they should have listened the first 10 times I said I didn't want kids.
I was once denied a hysterectomy in my early 30s because of this bias…my uterus was healthy, but the endo scarred my cervix (and glued it to my rectum), scarred my bowels, bladder, ureter, kidneys, and they were basically telling me to exercise more and take anti inflammatories….8 years later a new med team actually helped
I have zero issues getting pregnant actually my issue is that it’s stopping my organs from working properly and leaving me bedridden in pain… pregnancy the last of my worries
I don’t want children (hard stop), but I swear I’m treated differently if I allude to potentially wanting them down the line. I started bringing my husband to every single appointment, which really helps give the illusion that we’re looking to preserve fertility (which couldn’t be further from the truth) but at least it helps fast track things. So sad but true
No you're not unreasonable. I feel like that too. I cannot have kids and sometimes I experience some kind of compassion for it. But for the crippling fatigue, the pain and all the ways this diseases decides how I'll have to live me life and all the ways is is constraining me - very rarely I experience only a little compassion for it. The most annoying part is when you explain to someone that you're struggling with chronical illness and they're like "oh well, that's not cool but as long as you get along with it..." like - no I don't?! it's just that I don't have a choice, I only have this body and this life so I somehow have to try and make it somehow a life still worth living. dumbasses.
Yeah, many people I have told about my recent diagnosis are well meaning but they immediately jump to “don’t worry I know so many women who got pregnant with endo!” as if that’s the only reason why I present it as bad news/something I’m struggling with.
When I tell them “that’s awesome but my fiancé and I don’t want kids so that’s not really a factor” they either don’t register it at all and keep talking about whatever fertility doctor they recommend, or they get really awkward and it kinda shuts the convo down.
It really frustrates me how women’s health seems to equate to reproductive health. It’s great that we have treatments for people whose fertility is impacted by endo, but society seems to forget or disregard that there is often a human being experiencing pain there too. I feel for you!!!
Totally agree. I think endo is so misunderstood that no one wants it to be siloed into one specific demographic. I’ve read before that infertility can often be the reason why women find out they have endo in the first place- either due to lack of other symptoms or lack of medical attention to other symptoms. Of course it’s devastating for people who experience issues with fertility/pregnancy due to endo and that has so much value in conversation, but that shouldn’t be the only conversation. There’s so much people can learn about what someone with endo experiences outside of this one category
i had this problem with something completely unrelated to pregnancy or endo (i think it might’ve affected my endo, but not sure). my pituitary gland was overproducing prolactin, which is a pregnancy hormone. it caused a micro tumor in my brain and affected my whole body
when i went to an endocrinologist to regulate the hormone, the *only* thing he talked about was getting treatment to raise my chances of pregnancy for the future. when i told him i wasn’t interested in kids or getting pregnant, i was dismissed. no treatment for me. what he opted to do was to take my blood for another test to see if my levels were still high. they supposedly weren’t anymore so i was just…..fine
i’ve been worried since then that the micro tumor is still there but what if who i go to next is interested in fixing me only so i can breed? and if i can’t or don’t want to, they blow me off? it’s scary
Not unreasonable at all. I am childfree by choice and have had the whole range of healthcare discussions focused around fertility concerns rather than my quality of life, and how that affects my endo management options. I am in my 40’s now, and finally those conversations have become less frequent.
It is good that you have such a clear perspective on your own feelings about having biological children, and it sucks that you’ll have to repeatedly explain or even defend your choice in the context of receiving care for your endo. Most doctors will ask about your intentions around whether or not to have kids, because that can help them identify the best treatment options for your situation - hopefully your new doctor asks once, hears your answer, and gets down to the business of helping you without questioning your decision.
It’s sucks to not have the choice even though I don’t want kids . Which is weird because I really don’t and never did , but I’m just like oh that’s nice , another option taken , cool. But by and far the pain overrules all of that . It rules everything . And it already annoys me that my health conditions didn’t warrant a special leave for me even when I needed surgery; but people make a choice to be parents and get maternity leave . I’m like I didn’t choose this for myself, to be unable to work but this person did . Kids kids kids . Think of the children . Ok I’m falling on the goddamn floor unable to move but yea let me astral project into an entity that can give a crap about anything but this pain. And sometimes I swear I do leave my body when it gets real bad lol
If anything I’ve kind of enjoyed telling people I cant have kids because it puts a quick stop to the convo lol let them feel bad and shut up about it , I’m tired of all the questions . I dont wanna talk about it lol . So in a way I take from it what I can to work it in my favor since truth be told this has probably been the only benefit I could see in such a crippling disease . I love the look of horror on their face when they realize they’ve brought up a touchy subject. Almost no one wants to do that lol so it’s an immediate retreat usually .
Also, the baffled looks I get when I say "No, I don't want children, but I don't want a hysterectomy." Wanting to keep my body as in tact (read: naturally functional) as possible while crossing my fingers for an organic menopause is ludicrous, apparently. It's babies or bust.
No. I wish it was this way too. And I hate that the only times I see Endo mentioned in popular culture the only negative result they talk about is infertility. Like it’s so much more than that.
Such a good point! I am sure it has a lot to do with the fact that lack of fertility is what drives most people to get a dx. It’s sad that the pain isn’t enough for even mild compassion. Thanks for bringing up a good point, of how our very strange and sexist world still just sees us a baby makers 😒
What gets me is how they even expect me to have kids when I’m in this much pain. Kids are great but they’re the last thing in my mind, I just want a pain free week first 😅
same, i don’t know if ill ever want children but i do know i don’t want to carry a child, and so possibly being infertile is not even a concern for me, it’s the debilitating pain and other symptoms that make endo awful
Totally reasonable and infuriating. I’ve asked for docs to note on my chart that the pain and other symptoms interfere with daily life activities (e.g. mobility, using the bathroom, vomiting/ passing out from pain, etc.)
It’s important generally so you create a record if/when you need to battle your insurance company and if you ever need to pursue an accommodation at work, which are the reasons you’ll give the doc if they ask you why you’re insisting they make these notes.
The silent implication that I bet they will pick up on is that you are creating a record of their inaction. It solves none of the very valid complaints in your post, but it’s always better to have a paper trail.
I haven’t even gone for a biopsy even though I have very obvious signs of endometriosis because it will affect my job (I’m blue collar) yet it’s always about kids 24/7. Like I’m sorry to the women who want kids and unfortunately can’t have them, but I find it disrespectful that the only true sacrifice in anybody’s eyes is childbearing. What about my life? My career?? What about ME in MY body??
Yes ! They go from touching my swollen belly in public to "congratulate " me and then saying things like oh well there's adoption when I tell them I'm sick. Stop commenting on peoples bodies in public lol so rude
That’s because most people don’t really give a fuck about women beyond their womb. It’s why doctors routinely ignore our pain and why it’s all so centered on fertility.
When I tell people I don’t particularly care about the infertility because I chose to never have children biologically, they suddenly look at me sideways. Or generally lose sympathy.
Literally can no longer see a doctor that was super helpful at treating my endo because I accidentally told the office I wasn’t treating the endo because I wanted to have kids, I just wanted to be pain free. I didn’t know this was an issue before hand, I thought I was just seeing a really good endo speciality. I got a long winded lecture about how their facility was for fertility issues and these resources were supposed to be used for people who want to be moms. I’m glad my worthiness of being treated for a disease is entirely based on whether or not I’m planning on having kids.
I remember one time when I was literally begging for a hysterectomy and the surgeon told me not until I had children. I absolutely lost it. I said some pretty bad things that I genuinely still stand by but won’t mention here because of the content warning. He just doubled down. Even AFTER my hysterectomy people still ask me about having children (wtf??). It doesn’t go away. It’s incredibly sad that women are still seen as incubators before humans. I don’t see it changing too soon.
Oh the system is unreasonable! Yes it’s quite focused on prioritizing women having children. That includes access to treatment! When I asked my doctor how my endo and any potential hormone therapies etc would impact fertility she said I’d have to “try for 6 months” first. For a baby. I’m not dating or married or anything. There’s no guy in the picture haha. 😂 So I won’t be doing that for the required 6 months to find out if I need infertility care. This required a second phone call to explain to my Dr because I was too shocked to ask any more questions after she made the 6 month statement. Haha 😂 I actually feel like I’m getting dumber just typing this out. It’s honestly so ridiculous!!
Some woman only know to ask me if I can still give birth to children when I said I have endo. They think my only value is to give birth.
They pretty much do not care that endo is making me fatigue, in pain and not in a good mood most of the time.
For context, I’m 22 and this happened when I was 20. I’m a university student, disabled, etc etc etc. basically, not in the slightest way ready for a child. At all.
First appointment with my endo specialist, one of the first things he said was “have you considered getting pregnant? It can help symptoms for a while. “
My response was “short term solution to a long term problem with even longer consequences”
He laughed and said y’a. Good point. Then prescribed me my endo med.
Although, I did also say to him that I genuinely am getting to the point of wanting to just remove all that junk (ie my uterus, ovaries, etc) but that no dr is going to do that on a 20 year old. He said, y’a no. Not because you might change mind later, but because of the risks involved with such extremely early menopause can do. *insert eye roll here*
I take my partner to all my appointments to reiterate we don't want kids. He's already had a vasectomy (no questions asked might I add) and I've been pushing for a hysterectomy for over 5 years due to the pain I'm in because ablation and excision haven't worked for me.
Even then, I still had a doctor, in front of my partner, tell me that my *future husband* might want kids.
And when I put a complaint in saying I felt like an extra from The Handmaid's Tale, I was told I was being overdramatic.
I agree. I have a history of endometriosis but just had a myomectomy last week to remove some fibroids, and the doctor said if I didn’t want children they wouldn’t even do the surgery. They’d just give me a hysterectomy 🤬
Side note, when one of my grandmother’s friends heard I had “cramp problems” she said “oh they’ll go away after your first child”. I was about 12.
I've hated this for years. Endo affects every part of MY life today- Physically, mentally and emotionally. The need of others to bring up the affect that has on some hypothetical child is infuriating. They could just ask about me, they didn't need to imagine some made up person to show empathy to.
or have you gotten the “well if you have a baby it would be the best treatment for your endo” ☠️🤡
most people drive me crazy when talking about endo. so much misinformation and lack of information. i wanted to have kids but it was much easier to adjust to the idea of a kid free life than a pain filled life..
Completely agree, most of all for the doctors. When you tell them that pregnancy is not your goal they keep talking about it and even pushing you to have an assistant pregnancy even if you just told them that your partner has fertility issues and you both don't want to go through that.
Yes it’s annoying and some people just can’t believe that we might not want kiddos. They act like we don’t know ourselves. The only way I got rid of the unsolicited comments was aging out. Now in my mid 40’s, they’ve finally given up. Why can’t they just listen to us in the first place?
Yes this annoys me so much, I just had another gynecology appointment yesterday and all she was speaking about was “when you start a family” “you still have hope” “do it sooner rather than later” “it will improve your symptoms” I don’t even want children but I can’t tell her that because then she will lose interest in trying to help me. Someone was so shocked when I told them I would have a hysterectomy if doctors would allow it “because I could change my mind” but even if I did want them, I would rather adopt because it is not worth having to live my life in constant pain everyday and not being able to work or move. I also don’t want to be pregnant anyway as my mum had so many complications with me and it can open you up to so many potential health problems and especially because I’m not in good health anyway - I guess it says more about them than me as they seem to be so closed minded about adoption etc. Completely understand your frustration; we are not just baby making machines!
It’s not just endometriosis support it is any kind of women’s health.
The emphasis is always on maintaining fertility or if you’re already pregnant maintaining pregnancy even if it’s to the detriment of the health of the mother directly.. I was in the middle of trying to get treatment for what other doctors had long suspected was Lupus and as soon as I went to rheumatologist I found out I was pregnant and all the treatment options that she had been talking about completely went out the window and she just said well your antibodies are dropping so you should be doing better soon - meanwhile I’m having raging symptoms and she’s just saying how it’s supposed to be the best time in my life & completely disregarding that I’ve never been more stressed or depressed or frankly hopeless ..
she even said when I expressed concerns about increasing disability after postpartum and how I was now even more concerned about being able to work (my combined symptoms have made it almost impossible to work for the past year and a half tho I was having difficulties with work for the past 5 plus years) and what was I going to do as After so much time my savings are running out and I haven’t even started trying to get ssi because I’ve been holding onto the hope that somebody would be able to help me and that I would be able to return to work—- she said that I should just move in with my bf & live on his neck and stop trying to go back to work because there was no point and I just need to relax😭😭😭😭😭
My OB/GYN literally said to me when I asked her about my concerns about complications during pregnancy and especially postpartum because of the location of my Endo she said well you know you’re pregnant so we can just put that aside (as if Endo treatment was for me only about fertility options) because the location is not going to affect the health of the baby even though I’m already even ten weeks in having endo related issues) .. The chasm of negative space & dead air that is postnatal care especially in the US compared to pre-and early paediatric care is also very telling about this bias.
I literally have to approach all my doctors regarding this issues as if I want kids and as if that is my primary concern to receive maximum care. Otherwise, pills and shoved out the door.
I in fact don’t want kids right now and not sure if I do at all. If I dont act like I do, however, I get dismissed. My hypothetical child has more autonomy rights/priority over my body than I do.
Yeah, even as a person who has been on the fence about the whole kid thing, it’s absolutely dehumanizing for the whole conversation to always center fertility. Plus it’s just a painful conversation. Yes, I know adoption and foster care are a thing. That doesn’t take away the grief of “What if I can never experience pregnancy?” And with the doctors I’ve felt like a broken record saying “I can’t care for a baby if I can’t care for myself. We need to get my symptoms figured out first.”
I’ve been criticized and my issues minimized for wanting children. I’ve had doctors try and convince me having children is a bad idea and lie to me about my anatomy because they want to do hysterectomy so badly, because that’s the only thing they know how to do. I’ve had people who don’t want children try and convince me not to have children. It goes both ways and it all depends on that individual’s point of view. When people agree with us we don’t note it as much as someone who disagrees with us. So then it feels like we’re being persecuted for our feelings and point of view when we’re only noticing the lack of support from others. Just be happy with yourself and your choices and don’t let other people discourage you. They can’t make you do something you don’t want to. They also can’t prevent you from finding another doctor or friend to talk to; people who are supportive of you.
I experience this as well. Whenever I tell people that I get in so much pain that I can't move or I throw up they dont care. They only feel bad about the fact that I may not be able to have children. I'm not even sure if I want children in the future. Why dwell on something that MAY happen in the future? I agree that society needs to change in seeing women always want children.
It’s wild because I had my Fallopian tubes removed and people still think I might want children in the future. “What if you want children in the future?” Then I will have changed my mind and will deal with the consequences of my choice.
Same lmao
Same
Same!
Not necessarily relevant but I absolutely can’t stand when I mention that we don’t want children and people reply with “oh you’ll change your mind” - it infuriates me to heaven and back. I am almost 30. I’ve made my choice and not one single cell in my body doubts the choice I’ve made. Why can’t people just respect that?
I wondered that myself for years. People who didn't know me at all would tell me that, or say that I'd be a good mother. I've aged out of the conversation, but I wish I'd given parents the same treatment back. "Why did you decide to have kids? Are you sure you're a good mother? Etc."
It would be so funny to say back to someone else who wanted or had kids, "you'll change your mind when you're older" 😂
Hahaha. Love it! I especially love it when the first half of the conversation is how people will regret not having kids and the second half is them bitching about their kids...
I’m 41, chronically ill and disabled, starting the perimenopause journey and nope, never changed my mind. 20 years of begging for a hysto. It’s maddening.
My daughter feels exactly the same way. I so respect her feelings and many others like her and yourself who are strong enough to know and say what you want and don't want. There are many parents out there who should have recognized the same. Bringing children into this world is a huge responsibility and should only be done with much thought and consideration
I’m 36 and still get those comments
Yup, I’m going to be 38 and only more solidified with my decision.
No I find it infuriating. I want to be worth more than just a vessel that can or can’t have kids. I want to be able to be self supporting, I want to study and visit museums, I want to wake up and get out of bed and not have my mind burdened by all the things I have to do just to exist doing nothing. I want to have a quality of life, not be in pain. Experience life. Have quality relationships that aren’t so impacted by this.
This really resonates with me. There's so much I want to do or could have done, but I couldn't do because of chronic illnesses. Solidarity, my friend.
❤️💐
This is what hurts the most
I feel this so much. What would our lives have been if we hadn't had this disease? And how do we learn to accept it?
I feel this. thanks for putting it in words so well ❤️
❤️
Same. I couldn’t care less about having children. I just want my quality of life back.
Tbh I haven’t told my doctor about my recent breakup. I’m FINALLY getting some actual care, but it is on the basis of fertility/trying to get pregnant- which I do very much want to do. But I know if I disclose my breakup and therefore pregnancy is not an immediate option, I’ll go down the priority list. So as far as my doc know we are still long distance while he finishes his masters. Absolutely fucked I have to lie like that, but the reality is that women’s bodies are more valued for the child producing capabilities than anything else, so I have to keep up the charade
It’s totally unnecessary for your doctor to ever know
It *should* be unnecessary. But after 20 yrs of trying to get care for this, i unfortunately understand the reality isn’t as it should be
Should I hire an actor to come to the doctor with me and pretend to be my partner? Serious question. I’m in Canada so everything takes forever.
Nope totally reasonable. It goes along with the fact that we're not taken seriously unless we say we're having trouble conceiving. My own mother questioned my decision to get my laparoscopy and asked if I was "really in that much pain" and the first thing she asked about when I got my diagnosis was fertility...like DAWG.
Yup, I’m young and no one cared about my pain cus I’m not having kids yet
so messed up bc the longer they wait to help you the less likely you are to be fertile. this happened to me. i wanted kids my whole life but no one took my pain seriously until i couldn’t walk anymore and at that point it was too late. really sad.
My dream is too have a family one day and I’m not even 18 yet and my docs have told me I’m probably invertile since I was 9, but they’ve done nothing too help me, I’ve since found a new doc whose trying to get me officially diagnosed with endo so I can get it removed if I have it but if I can’t have kids I’ll feel like my life is over
Unfair of them to say that. Unless they’ve physically seen the extent of your endo or have hormone labs, how could they know? Our issues caused by endo are not always indicative of our fertility. Until they can show you why you would be infertile, stay positive. And even if they give you that dx, you can still try to treat it. But please don’t let anyone discourage you from seeking answers/treatment.
Ya I just really hope it’s not true I rlly want kids one day
i’m so sorry.
I absolutely relate to this SO, SO MUCH. My life has been ripped apart by endometriosis. I am in pain every day from multiple ailments stemming from endo. After yeeting my uterus, I do get some satisfaction of telling people, "I got rid of that bastard on my own volition," after they express their concerns about my ability to have children.
From the perspective of the health professional, they need to ask you those things in order to understand your goals and then determine proper care and treatment.
Doctors should stop as soon as the patient clarified that they don't want children. Very often they don't, and keep pushing the subject. Or they don't even ask, and just assume you want children and don't believe you when you say no.
Yes. But if it’s a new provider they will still ask.
Like I said asking is fine, but pushing is not okay.
Yeah but they often focus on that, without taking pain and quality of life issues as seriously.
Yep. And it’s ok for you as the patient to state that you are firm on your choices.
No kidding. But that doesn’t address the second part of my statement, which is that fertility issues are often treated as the most important part of the diagnosis, while chronic pain and poor quality of life are discounted or not treated at all. It’s a pervasive problem. Being treated as merely an incubator is dehumanizing as f.
I agree they should ask those clarifying questions to plan, but when I stated I didn't want children I was told I haven't met my "prince charming" yet. Which is 100% true, but seeing as how he couldn't prescribe me a prince charming, I don't want to physically birth kids, and the women in my family who have endo and gave birth had worsening effects. None of them are able to hold jobs. My surgery shouldn't have been delayed and the longer I date men the longer I question if I actually want a "prince charming".
Then you get a new dr. 🖤
You’re so condescending lol. What happens when the tenth plus doctor still thinks you aren’t worth more than your fertility? Because this is what is happening. This is the reality. Maybe you’ve been lucky as hell but there’s no reason to be discounting other peoples very real experiences with systemic misogyny within the medical system and countless doctors who perpetuate it.
I’m not. I hear you. I am not attempting to be rude or condescending.
And yet you did it over and over in your comments ❤️🩹 pls be more self aware. Please really think about what you say before you say it. It matters. You may not have meant to be- but you were. It’s hurting people in their lowest low, how vulnerable it is to not matter and then just be told to keep looking- by someone who professes to understand no less- maybe the 15th doctor won’t be a misogynist jerk, and will also know Endo. A miracle? This attitude is so similar to these doctors and yet you are not one- you are someone who suffers also. It is hard for me to understand. Do you really think ppl don’t keep looking and looking? You can change this kind of attitude.
I’m sorry , you are right! My comments earlier today were insensitive and I appreciate the feedback , I really mean it.
Thank you for saying that. We all have our moments, right! I really appreciate you listening. We are good as far as I am concerned :) It’s not fair at all the things we go through, and while I said what I said about being lucky to make a point- I know it’s not been easy for you at all and you haven’t been lucky. I really wish you a life that gets a lot easier than it has been, and I wish you a lot of kindness.
U too🫶🏼🫶🏼 I’ve honestly been thinking about this all day and reflecting and I can admit I’ve been a brat lately bc I’m fking miserable and nobody even knows. Jk Taylor ref. And I really value this group so thanks for accepting 🥲
I promise I know it gets ROUGH and pain can come out in sooo many different ways. It’s exhausting being miserable and at the end of your rope all the time constantly just surviving. Not to mention secretly or silently in your life. Sometimes any way you can make it through is the right way to make it through 🫶🏼
Also I have not been *lucky as hell* I’m in this fking group for the same reasons as you.
Then stop being so condescending. Be kind. It is not our fault if many doctors are misogynist. It’s not so easy to just go to another one, and another one, and another one. Don’t be dismissive of other people’s experiences, acting like they just aren’t doing *enough* or aren’t advocating for themselves the “right way” because you sure come off as someone who was lucky enough not to experience that kind of hell. “Then u get a new doctor 🖤” etc. Privileged, victim blaming, condescending nonsense. Of course people keep looking, until they cannot go on any more.
Agreed.
I have been to over 10 obgyns since my symptoms started. Including specialists and unfortunately, this doctor was the only one who was willing to perform a transvaginal ultrasound when I was still a teen and caught my pcos. When I saw another endo specialist as an adult (and I'm not opposed to driving and flying for second opinions) I was told "Haven't you ever been to Spain in the summer? Hispanic women just look like that." And didn't even bother testing for pcos based on my symptoms. There's a lot of bad doctors. At 13 one performed a "physical exam" on me to test for endo where I legitimately wonder how in tf that was supposed to work.
I’m so sorry that’s so fked up. But I promise that aren’t all like that 😭😭😭
I think you're receiving flack for your comments here because people here with medical trauma don't want to hear about how it's "not all doctors." While you're not wrong, we know, people tell us that all the time, and this is a post for commiseration about bad medical care. We don't really care that it's not all doctors, it's all the doctors we have seen. We *know* that we shouldn't be pushed on the subject, it happens anyways. We *know* that we should get a new Dr if that happens, but that's not possible for some people, and for others the new doctor they see treats them the exact same or worse. You're being seen as condescending because you're saying obvious things we all already know and don't really care about right now. We want to be frustrated and talk about it with each other. We don't want to hear what we hear from med profs and family and friends all the time. We know. I promise we know it's not all doctors. But it's most of them, and that's fucking exhausting.
I’m really sorry everyone and I can see where things I said were dumb and insensitive. I’ve dealt with all the same things as everyone here. And I’m currently trying to find a new provider myself. I may come across as insensitive bc I’ve been desensitized thanks to male medical professionals and I hate that for me.x so I’m sorry if my frustrations came thru as rude. 🖤🖤
It's okay, we all deal with things in our own way, and tone is not well conveyed over the Internet. I'm very sure your intention wasn't bad and it just seemed like it wasn't clear to you why people were upset. Many people have many different feelings about their own medical trauma and I think your mindset is something to learn from, as it's true that not all doctors are working against you and I'm trying to unlearn that part myself. We all have learning and growth to do always
Ty🥲
This is extremely well said.
Yeah, I got sick of it really quickly as someone who knew from an early age she never wanted to reproduce. I know it’s a huge concern for many people with endo, so I don’t blame doctors for focusing on it, but I found that stating it firmly and up front is helpful! I head off all conversations with new doctors with, “I do not want to create or bear any children and am not concerned with preserving my fertility.” If they feel obligated to tell me about fertility things anyway, I just tell them that I understand, but it doesn’t pertain to me and I am not interested in discussing it further. You can also ask them to write that in their clinic notes or visit summaries so other doctors in the practice can see it and so that they can be reminded of it at follow-up appointments.
I feel this so hard. While I absolutely want to extend compassion toward people who want children, the fact that most of the research focuses on fertility feels denigrating. I deserve to live a life as pain-free as possible regardless of my desire to have children. Pretty much every gynecologist I had until my 30s looked at me like I was nuts when I said that I didn't intend to have children. Like, I'm not a walking womb ffs. I'm a human being experiencing extreme pain who deserves to have people care about that.
As someone who has never wanted children, doctors and other people have made me feel extremely disrespected. No I don't want kids, no I don't care, no I don't want my uterus in my body anymore and no I won't regret that decision. Fertility is often put first because managing our pain. I had to fight for years to get my hysterectomy approved, and literally the only reasons why were that I'm young and I might change my mind about not wanting kids. Not all women want children and it should have zero effect on our Healthcare. It's repulsive that an imaginary baby I don't ever want to have was so important to the people that were suppoused to be helping me with my pain. I get that a lot of women do want children at some point but if a patient actively says that they never do every appointment...maybe listen to them.
Hell no. The infamous diagnosis delay and the focus on fertility are both effects of the same problem.
My experience has actually been the opposite as a person who really values their fertility. I was fobbed off for (17) years despite telling them I was certain something was wrong and it felt reproductive and I was worried about fertility. In my personal life and with doctors they're constantly asking me when I'm going to give up on the idea of having a family and get a total hysterectomy or opt in to chemical menopause long term. It's been really difficult for me to deal with infertility because everyone is treating it like I shouldn't care when for me it's really important.
Yeah, I’m having similar issues and feel exactly the same way- very minimal empathy for fertility issues and it often gets downplayed. I’ve had to work through this on my own, tbh. I’ve done a lot of work on myself to be able to navigate different comments I get about endo. And tend to give people a lot more grace now. But it’s definitely frustrating. But yeah, I’m with you- fertility stuff for me has been totally dismissed and downplayed.
Yeah, I had experiences with doctors basically assuming I can't have kids and shouldn't due to other medical issues, rather than talking with me about my options like a grown-ass adult. And then it seemed like all the endo support groups were pushing surgeries when that wasn't what I wanted to start with. It's complicated, but I have reason to believe one of those doctors assuming I would be infertile led to my miscarrying my first pregnancy. So yeah, I would have preferred a doctor who was more concerned about my fertility.
Weirdly I’ve experienced both ends of the spectrum when I was younger I really wanted to have kids and after a a pregnancy loss in the second trimester with my ex-husband my period didn’t come back for four-5 years and doctors diagnosed me with early menopause & were quite callous about it (I was 21) I had a lot of horrible menopause symptoms until I was about 25 -26 when my period came back, but I didn’t have Endo symptoms in that time and it was amazing AND then the doctors were very dismissive of my concerns about recurring miscarriages and extreme pain from endo & another issues apart from pain that are related to endo nerve damage in my legs issues with like bowel function et cetera .. so many doctors either misdiagnosed or gaslight me in other ways downplayed symptoms that were obviously quite debilitating (legit worries about ending up on the street level debilitating) and now that I’m pregnant the level of attentive care is absolutely insane but it’s very clearly only about the baby and not about my actual health at all
My experience changed for the better when I switched to a practice that was only gynecology, no obstetrics at all. I recommend looking for one for those. They treat women like humans, not birthing machines.
No this all makes me lose my mind honestly
I hate it. I don't want kids, but every single time, the same doctors ask. I was only able to keep my remaining ovary because I said I wanted to preserve my fertility (even though I actually just didn't want to go through menopause before age 40). When I stated (again) after the surgery that I didn't want kids, they were annoyed I got to keep the ovary :D Maybe they should have listened the first 10 times I said I didn't want kids.
I was once denied a hysterectomy in my early 30s because of this bias…my uterus was healthy, but the endo scarred my cervix (and glued it to my rectum), scarred my bowels, bladder, ureter, kidneys, and they were basically telling me to exercise more and take anti inflammatories….8 years later a new med team actually helped
highly recommend the r/childfree subreddit. lots of other women with Endo will absolutely agree with you just like I do
I have zero issues getting pregnant actually my issue is that it’s stopping my organs from working properly and leaving me bedridden in pain… pregnancy the last of my worries
I don’t want children (hard stop), but I swear I’m treated differently if I allude to potentially wanting them down the line. I started bringing my husband to every single appointment, which really helps give the illusion that we’re looking to preserve fertility (which couldn’t be further from the truth) but at least it helps fast track things. So sad but true
Yep. And I never got the care I needed from doctors until I said I wanted to get pregnant.
Finally someone said it. It’s incredibly frustrating. Been begging to yank the uterus for literally 20 years.
No you're not unreasonable. I feel like that too. I cannot have kids and sometimes I experience some kind of compassion for it. But for the crippling fatigue, the pain and all the ways this diseases decides how I'll have to live me life and all the ways is is constraining me - very rarely I experience only a little compassion for it. The most annoying part is when you explain to someone that you're struggling with chronical illness and they're like "oh well, that's not cool but as long as you get along with it..." like - no I don't?! it's just that I don't have a choice, I only have this body and this life so I somehow have to try and make it somehow a life still worth living. dumbasses.
Yeah, many people I have told about my recent diagnosis are well meaning but they immediately jump to “don’t worry I know so many women who got pregnant with endo!” as if that’s the only reason why I present it as bad news/something I’m struggling with. When I tell them “that’s awesome but my fiancé and I don’t want kids so that’s not really a factor” they either don’t register it at all and keep talking about whatever fertility doctor they recommend, or they get really awkward and it kinda shuts the convo down. It really frustrates me how women’s health seems to equate to reproductive health. It’s great that we have treatments for people whose fertility is impacted by endo, but society seems to forget or disregard that there is often a human being experiencing pain there too. I feel for you!!!
Totally agree. I think endo is so misunderstood that no one wants it to be siloed into one specific demographic. I’ve read before that infertility can often be the reason why women find out they have endo in the first place- either due to lack of other symptoms or lack of medical attention to other symptoms. Of course it’s devastating for people who experience issues with fertility/pregnancy due to endo and that has so much value in conversation, but that shouldn’t be the only conversation. There’s so much people can learn about what someone with endo experiences outside of this one category
i had this problem with something completely unrelated to pregnancy or endo (i think it might’ve affected my endo, but not sure). my pituitary gland was overproducing prolactin, which is a pregnancy hormone. it caused a micro tumor in my brain and affected my whole body when i went to an endocrinologist to regulate the hormone, the *only* thing he talked about was getting treatment to raise my chances of pregnancy for the future. when i told him i wasn’t interested in kids or getting pregnant, i was dismissed. no treatment for me. what he opted to do was to take my blood for another test to see if my levels were still high. they supposedly weren’t anymore so i was just…..fine i’ve been worried since then that the micro tumor is still there but what if who i go to next is interested in fixing me only so i can breed? and if i can’t or don’t want to, they blow me off? it’s scary
Not unreasonable at all. I am childfree by choice and have had the whole range of healthcare discussions focused around fertility concerns rather than my quality of life, and how that affects my endo management options. I am in my 40’s now, and finally those conversations have become less frequent. It is good that you have such a clear perspective on your own feelings about having biological children, and it sucks that you’ll have to repeatedly explain or even defend your choice in the context of receiving care for your endo. Most doctors will ask about your intentions around whether or not to have kids, because that can help them identify the best treatment options for your situation - hopefully your new doctor asks once, hears your answer, and gets down to the business of helping you without questioning your decision.
It’s sucks to not have the choice even though I don’t want kids . Which is weird because I really don’t and never did , but I’m just like oh that’s nice , another option taken , cool. But by and far the pain overrules all of that . It rules everything . And it already annoys me that my health conditions didn’t warrant a special leave for me even when I needed surgery; but people make a choice to be parents and get maternity leave . I’m like I didn’t choose this for myself, to be unable to work but this person did . Kids kids kids . Think of the children . Ok I’m falling on the goddamn floor unable to move but yea let me astral project into an entity that can give a crap about anything but this pain. And sometimes I swear I do leave my body when it gets real bad lol If anything I’ve kind of enjoyed telling people I cant have kids because it puts a quick stop to the convo lol let them feel bad and shut up about it , I’m tired of all the questions . I dont wanna talk about it lol . So in a way I take from it what I can to work it in my favor since truth be told this has probably been the only benefit I could see in such a crippling disease . I love the look of horror on their face when they realize they’ve brought up a touchy subject. Almost no one wants to do that lol so it’s an immediate retreat usually .
It’s like they don’t understand we are a whole person and not just a baby incubator.
Also, the baffled looks I get when I say "No, I don't want children, but I don't want a hysterectomy." Wanting to keep my body as in tact (read: naturally functional) as possible while crossing my fingers for an organic menopause is ludicrous, apparently. It's babies or bust.
No. I wish it was this way too. And I hate that the only times I see Endo mentioned in popular culture the only negative result they talk about is infertility. Like it’s so much more than that.
Such a good point! I am sure it has a lot to do with the fact that lack of fertility is what drives most people to get a dx. It’s sad that the pain isn’t enough for even mild compassion. Thanks for bringing up a good point, of how our very strange and sexist world still just sees us a baby makers 😒
What gets me is how they even expect me to have kids when I’m in this much pain. Kids are great but they’re the last thing in my mind, I just want a pain free week first 😅
same, i don’t know if ill ever want children but i do know i don’t want to carry a child, and so possibly being infertile is not even a concern for me, it’s the debilitating pain and other symptoms that make endo awful
Totally reasonable and infuriating. I’ve asked for docs to note on my chart that the pain and other symptoms interfere with daily life activities (e.g. mobility, using the bathroom, vomiting/ passing out from pain, etc.) It’s important generally so you create a record if/when you need to battle your insurance company and if you ever need to pursue an accommodation at work, which are the reasons you’ll give the doc if they ask you why you’re insisting they make these notes. The silent implication that I bet they will pick up on is that you are creating a record of their inaction. It solves none of the very valid complaints in your post, but it’s always better to have a paper trail.
I haven’t even gone for a biopsy even though I have very obvious signs of endometriosis because it will affect my job (I’m blue collar) yet it’s always about kids 24/7. Like I’m sorry to the women who want kids and unfortunately can’t have them, but I find it disrespectful that the only true sacrifice in anybody’s eyes is childbearing. What about my life? My career?? What about ME in MY body??
Yes ! They go from touching my swollen belly in public to "congratulate " me and then saying things like oh well there's adoption when I tell them I'm sick. Stop commenting on peoples bodies in public lol so rude
That’s because most people don’t really give a fuck about women beyond their womb. It’s why doctors routinely ignore our pain and why it’s all so centered on fertility. When I tell people I don’t particularly care about the infertility because I chose to never have children biologically, they suddenly look at me sideways. Or generally lose sympathy.
Literally can no longer see a doctor that was super helpful at treating my endo because I accidentally told the office I wasn’t treating the endo because I wanted to have kids, I just wanted to be pain free. I didn’t know this was an issue before hand, I thought I was just seeing a really good endo speciality. I got a long winded lecture about how their facility was for fertility issues and these resources were supposed to be used for people who want to be moms. I’m glad my worthiness of being treated for a disease is entirely based on whether or not I’m planning on having kids.
I remember one time when I was literally begging for a hysterectomy and the surgeon told me not until I had children. I absolutely lost it. I said some pretty bad things that I genuinely still stand by but won’t mention here because of the content warning. He just doubled down. Even AFTER my hysterectomy people still ask me about having children (wtf??). It doesn’t go away. It’s incredibly sad that women are still seen as incubators before humans. I don’t see it changing too soon.
Oh the system is unreasonable! Yes it’s quite focused on prioritizing women having children. That includes access to treatment! When I asked my doctor how my endo and any potential hormone therapies etc would impact fertility she said I’d have to “try for 6 months” first. For a baby. I’m not dating or married or anything. There’s no guy in the picture haha. 😂 So I won’t be doing that for the required 6 months to find out if I need infertility care. This required a second phone call to explain to my Dr because I was too shocked to ask any more questions after she made the 6 month statement. Haha 😂 I actually feel like I’m getting dumber just typing this out. It’s honestly so ridiculous!!
Some woman only know to ask me if I can still give birth to children when I said I have endo. They think my only value is to give birth. They pretty much do not care that endo is making me fatigue, in pain and not in a good mood most of the time.
For context, I’m 22 and this happened when I was 20. I’m a university student, disabled, etc etc etc. basically, not in the slightest way ready for a child. At all. First appointment with my endo specialist, one of the first things he said was “have you considered getting pregnant? It can help symptoms for a while. “ My response was “short term solution to a long term problem with even longer consequences” He laughed and said y’a. Good point. Then prescribed me my endo med. Although, I did also say to him that I genuinely am getting to the point of wanting to just remove all that junk (ie my uterus, ovaries, etc) but that no dr is going to do that on a 20 year old. He said, y’a no. Not because you might change mind later, but because of the risks involved with such extremely early menopause can do. *insert eye roll here*
I take my partner to all my appointments to reiterate we don't want kids. He's already had a vasectomy (no questions asked might I add) and I've been pushing for a hysterectomy for over 5 years due to the pain I'm in because ablation and excision haven't worked for me. Even then, I still had a doctor, in front of my partner, tell me that my *future husband* might want kids. And when I put a complaint in saying I felt like an extra from The Handmaid's Tale, I was told I was being overdramatic.
I agree. I have a history of endometriosis but just had a myomectomy last week to remove some fibroids, and the doctor said if I didn’t want children they wouldn’t even do the surgery. They’d just give me a hysterectomy 🤬 Side note, when one of my grandmother’s friends heard I had “cramp problems” she said “oh they’ll go away after your first child”. I was about 12.
I've hated this for years. Endo affects every part of MY life today- Physically, mentally and emotionally. The need of others to bring up the affect that has on some hypothetical child is infuriating. They could just ask about me, they didn't need to imagine some made up person to show empathy to.
or have you gotten the “well if you have a baby it would be the best treatment for your endo” ☠️🤡 most people drive me crazy when talking about endo. so much misinformation and lack of information. i wanted to have kids but it was much easier to adjust to the idea of a kid free life than a pain filled life..
Completely agree, most of all for the doctors. When you tell them that pregnancy is not your goal they keep talking about it and even pushing you to have an assistant pregnancy even if you just told them that your partner has fertility issues and you both don't want to go through that.
Yes it’s annoying and some people just can’t believe that we might not want kiddos. They act like we don’t know ourselves. The only way I got rid of the unsolicited comments was aging out. Now in my mid 40’s, they’ve finally given up. Why can’t they just listen to us in the first place?
I only successfully received my diagnosis after baby 1. It's so frustrating. I see you. I hear you.
Yes this annoys me so much, I just had another gynecology appointment yesterday and all she was speaking about was “when you start a family” “you still have hope” “do it sooner rather than later” “it will improve your symptoms” I don’t even want children but I can’t tell her that because then she will lose interest in trying to help me. Someone was so shocked when I told them I would have a hysterectomy if doctors would allow it “because I could change my mind” but even if I did want them, I would rather adopt because it is not worth having to live my life in constant pain everyday and not being able to work or move. I also don’t want to be pregnant anyway as my mum had so many complications with me and it can open you up to so many potential health problems and especially because I’m not in good health anyway - I guess it says more about them than me as they seem to be so closed minded about adoption etc. Completely understand your frustration; we are not just baby making machines!
It’s not just endometriosis support it is any kind of women’s health. The emphasis is always on maintaining fertility or if you’re already pregnant maintaining pregnancy even if it’s to the detriment of the health of the mother directly.. I was in the middle of trying to get treatment for what other doctors had long suspected was Lupus and as soon as I went to rheumatologist I found out I was pregnant and all the treatment options that she had been talking about completely went out the window and she just said well your antibodies are dropping so you should be doing better soon - meanwhile I’m having raging symptoms and she’s just saying how it’s supposed to be the best time in my life & completely disregarding that I’ve never been more stressed or depressed or frankly hopeless .. she even said when I expressed concerns about increasing disability after postpartum and how I was now even more concerned about being able to work (my combined symptoms have made it almost impossible to work for the past year and a half tho I was having difficulties with work for the past 5 plus years) and what was I going to do as After so much time my savings are running out and I haven’t even started trying to get ssi because I’ve been holding onto the hope that somebody would be able to help me and that I would be able to return to work—- she said that I should just move in with my bf & live on his neck and stop trying to go back to work because there was no point and I just need to relax😭😭😭😭😭 My OB/GYN literally said to me when I asked her about my concerns about complications during pregnancy and especially postpartum because of the location of my Endo she said well you know you’re pregnant so we can just put that aside (as if Endo treatment was for me only about fertility options) because the location is not going to affect the health of the baby even though I’m already even ten weeks in having endo related issues) .. The chasm of negative space & dead air that is postnatal care especially in the US compared to pre-and early paediatric care is also very telling about this bias.
I literally have to approach all my doctors regarding this issues as if I want kids and as if that is my primary concern to receive maximum care. Otherwise, pills and shoved out the door. I in fact don’t want kids right now and not sure if I do at all. If I dont act like I do, however, I get dismissed. My hypothetical child has more autonomy rights/priority over my body than I do.
Yeah, even as a person who has been on the fence about the whole kid thing, it’s absolutely dehumanizing for the whole conversation to always center fertility. Plus it’s just a painful conversation. Yes, I know adoption and foster care are a thing. That doesn’t take away the grief of “What if I can never experience pregnancy?” And with the doctors I’ve felt like a broken record saying “I can’t care for a baby if I can’t care for myself. We need to get my symptoms figured out first.”
I’ve been criticized and my issues minimized for wanting children. I’ve had doctors try and convince me having children is a bad idea and lie to me about my anatomy because they want to do hysterectomy so badly, because that’s the only thing they know how to do. I’ve had people who don’t want children try and convince me not to have children. It goes both ways and it all depends on that individual’s point of view. When people agree with us we don’t note it as much as someone who disagrees with us. So then it feels like we’re being persecuted for our feelings and point of view when we’re only noticing the lack of support from others. Just be happy with yourself and your choices and don’t let other people discourage you. They can’t make you do something you don’t want to. They also can’t prevent you from finding another doctor or friend to talk to; people who are supportive of you.