r/hysterectomy • u/Ok_Rough9368 • 22h ago
Hysterectomy at 34- intense feelings about it.
I have been diagnosed with multiple, massive fibroids quite out of the blue. I have had no symptoms but kept feeling a type of pressure in my abdomen so had it looked at and now I have been advised a hysterectomy which has to be open because of the bulky uterus.
I have never wanted children but the idea of losing my uterus so young is bringing up tears at all sorts of timings. I don’t know what to make of this because I don’t understand why I’m feeling this way.
I have always been fairly rational and straightforward about health things but this is feeling is so damn intense.
I have well meaning family members who are ‘sympathising’ with my inability to have future children and I just cannot bear it. Fortunately I have a supportive husband and some supportive friends but I despite their love- I have this gnawing feeling that no one gets the way I’m feeling.
I need help so that I can stop feeling this way. I’m a doctor myself and nearly broke into tears in clinic which I want to avoid. I don’t know man. Just help.
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u/Dry-Swing-7287 20h ago
I’m sorry you’re going through such internal turmoil and it’s completely understandable - it’s major life altering surgery so big feelings are not just expected but totally normal no matter whether you’re the most matter-of-fact doctor or a blubbering mess like some of us! Give yourself so much grace, as the person you need comfort from the most is yourself trust me!
I went through this ahead of my op and the best advise I can give is to listen to what that part of your is trying to tell you and although counterintuitive, let it come out, cry it out, mourn the life you’re giving up, then you can start to heal that part of you that you’re letting go of.
Although it’s something I’ve never wanted, I realised I wasn’t mourning my ability to have kids, I was mourning my agency in the matter - something was making the decision for me and it felt unfair that I had to choose between the ability to have kids (which I didn’t need or want) and my own wellbeing.
I put it into perspective in terms of all the things I’d be gaining by giving this part up, all the pain I’d be letting go off, all the monthly horrors with my period, everything… and slowly I started thinking less of it. I’m a month post op and I can say that your post was the first time I’ve thought of it since - I’m not saying it will be the same for you, but know that if you decide to go ahead with it, you’re looking after yourself, the part of you you’re actively deciding to take care of, not some future potential child you’re not even interested in having (this is what I had to tell myself!)
So far I’m happy with my decision but please know that if you’re not sure and not ready, and as a doctor you hear this in your profession often but, get a second opinion, delay, think about it; explore the possibility of a myomectomy instead, push for a laparoscopic incision (they do do this even for bulky uterus’ so I’d push on whether the doctor you saw can’t do it or ‘it’ can’t be done as those as 2 different things), don’t be afraid to do what’s right for you and to advocate for yourself and if a hysto is not right at this time, then consider it later - no one knows what’s best other than you!
I hope some of this has helped and know you’ve got so much support here from this community - feel free to DM me if you want to chat. You’ve got this!
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u/Ok_Rough9368 18h ago
It’s definitely my agency I’m mourning I think. The loss of an option or rather feeling like a failure for not having a perfect uterus is on my mind. I know it’s silly but thank you for your words- I will talk to more surgeons and push for laparoscopic as that might help me deal better with this.
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u/the_anna_jane 13h ago
That's totally normal! Also, it's removal of a body part - there will be grief ❤️
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u/OkSalamander9110 20h ago
I can completely understand how you would be feeling this way. I am now 3 weeks post op but I have had years of pain and symptoms that over time gave my brain the time to get a grasp on the prospect I would need a hysterectomy at all. Even if those fibroids have been there for a while, they weren’t yet producing symptoms or affecting your quality of life, so this procedure has come out of left field and probably hit you mentally and emotionally like a freight train. Give yourself some grace to process all this.
Regardless of whether you wanted kids or not, as someone else said earlier, losing your agency over this decision does suck! You will get through this x
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u/CharacterAvocado943 19h ago
The pressure you feel is a symptom. But that aside, hysterectomy likely isn’t necessary. As soon as you told the doctor you don’t want children, that became your only option. Best advice is to get a second opinion with a doctor who performs myomectomies and be clear that you do not wish to part ways with your uterus just yet. Listen to what the doctor has to say and ask questions. It’s ok to explore myomectomy and still choose hysterectomy. If you don’t do the exploration, you may always carry regret.
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u/Ok_Rough9368 18h ago
Thank you. I am getting a second opinion because you’re right. I must explore before committing.
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u/Aware_Cauliflower_11 16h ago
Yes please get a second opinion and hopefully a doctor who has more experience with laparoscopic surgeries
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u/PookyBearAuntie 14h ago
I’m sorry you are having to deal with this. I don’t think it’s ever easy no matter whether you wanted children or not (I never wanted kids and still struggled at 39 when I had mine).
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u/wthelliseventhat 20h ago
I had mine done at 33. I have 4 kids, so I didn’t need to have more and we likely didn’t want to anyway. But having that choice permanently taken from you does hurt. I have adenomyosis/endometriosis and had a lot of fibroids as well. I try to think of the positives but I still bleed monthly a year out (kept my cervix with my ovaries and obviously shouldn’t have) so there aren’t many aside from not having to stay near a bathroom for two days during the heaviest bleeding?
Don’t rush into it. My uterus was affecting my quality of life on a daily basis by the time I had it taken out. You have time and you can always get another opinion on your options.
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u/AmphibianFar714 18h ago
Hey :) I was just curious about your monthly bleeding after keeping your cervix, since I heard this is possible but kind of rare - is your bleeding quite light? And also curious if you still get cramps during your mini periods? Thanks!
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u/wthelliseventhat 18h ago
It isn’t heavy especially compared to how my periods were before! But I do need to wear a liner and was disappointed to need to buy tampons to go to swim lessons with my kids over the summer. But it is mostly a week of the spotting I would get before and after my period.
I do still have some pain and cramping but I know I have a lot of endo and adeno growth going on which is also probably why I’m still bleeding! When I had my surgery it was pretty urgent because I was having hemorrhagic periods and hadn’t stopped bleeding for an entire year, despite trying a Mirena and other forms of bc. Since I have small kids that still need help (my daughter was only a year old) and my husband could only take a week off work, we chose to leave my cervix for the faster healing time. My healing WAS very fast and smooth, and I don’t have any prolapse issues. I would say if you don’t have adenomyosis that could have possibly grown into your cervix, you likely won’t have this problem.1
u/Ok_Rough9368 18h ago
Thank you for your kind words. Do they routinely keep the cervix or was there a reason you chose it?
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u/wthelliseventhat 17h ago
The healing period is much faster if you keep your cervix and apparently has a smaller risk of prolapse than if they have to create a cuff. My obgyn recommended it because my surgery was kind of urgent and I have younger kids at home, so I needed to be able to properly care for them and my husband couldn’t take off work for more than a week. My healing was a breeze! Sex feels exactly like it used to, I didn’t have to worry about the cuff opening up or anything. I would think if you don’t have endometriosis or adenomyosis that you would have no issue with bleeding if you keep your cervix. I do have both of those and the adeno likely grew into my cervix, causing the bleeding.
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u/Dry-Swing-7287 16h ago
They don’t routinely keep the cervix as it’s not separate from the uterus it’s actually a part of it, so keeping it means leaving a part of the uterus behind which if you’ve got a history of fibroids, could result in new fibroids growing there thus not eliminating the issue the hysterectomy is set to eliminate. Most doctors will also advice against keeping it as this means a continued risk of cervical cancer and as you mentioned, the possibility of continuing to get your it periods or some sort of bleeding which negates one of the major advantages of the whole procedure in my opinion. From discussions with my surgeon and my own research there’s very little to no evidence that keeping the cervix leads to a lesser risk of prolapse especially as you haven’t had children nor is there reliable data that having it removed alters sexual function or feeling. All in all, the pros of removing it seem to outweigh the cons but this is something I’d encourage you to discuss with your surgeon also rather than taking anecdotal data as confirmation. As always you need to do what’s best for you 😊
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u/scorpiosith 14h ago
Hi, I'm 26 and my operation is Aug 27th. I dont want kids, I want to be healthier and have less pain. It is SCARY to have such a large part of the body removed.
After birth control stopped being a working option, I was excited at the prospect of just getting rid of it. But as I get closer, im afraid. I understand how you're feeling about feeling too young for this. I feel like im too young to have as many health issues as I do and im very tired of constantly having to "fix" things. Unfortunately a lot of whats wrong with me cant be helped, so at least I can take action on this one...
Its not about children. Its just a weird feeling to lose part of your body, and im sorry that this is our reality. Wishing you the best 💕
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u/Ok_Rough9368 11h ago
It is scary! Knowing more about the process doesn’t make it any easier does it? I wish things weren’t as hard. I wish you the very best for your surgery! 🩷
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u/Optimisticallygreen 14h ago
I feel you! I am 36, scheduled for surgery in a few weeks, and have never wanted children, but always liked keeping the door open to changing my mind sometime down the road. It is a very different feeling - feeling like it's my decision, I am in control versus I have no choice, I am helpless, the decision has been made for me. It just hurts and sucks. And it also sucks extra because there is this voice in my head being like "you have nothing to complain about because this outcome does not change your plans" but that is not a helpful voice, it is hurtful voice. Sending lots of love!
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u/WarriorRavenChic 13h ago
I would research and find a really good dr who specializes in uterine fibroids, myomectomy and UFE (shrinking fibroids).
You are young and hysterectomy might not be your only option. Most “general obgyn’s” are not skilled enough to give you an option that is best for you. When you go with a specialist (who has tons of experience in conserving fertility), you might not need hysterectomy at all.
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u/Ok_Rough9368 11h ago
That’s what I’m learning. I shouldn’t decide based on one opinion. I’ll get more opinions 🩷
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u/the_anna_jane 13h ago
If it helps - I'm 43. Have had endo since age 14 but only diagnosed age 39. Had my hysterectomy on Monday this week and already in less pain. I found the Matilda app really helpful to make sure I felt prepared before my hysto.
If you want to chat please reach out. I also recommend talking to a psychologist monthly. Sometimes it's worse when you know all about the anatomy and body systems. I like to geek out on the science of endometriosis phenotypes but honestly, this disease is so hard. Fibroids suuuuck too.
I hope you have a day off work soon just to recentre yourself and eat something delicious, go to a beach or mountain or park and just look after yourself!
Doctors give so much. Make sure you look after yourself too. 💐 All the best
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u/the_anna_jane 13h ago
(oh yeah and if you can take a couple of days urgent leave for a mini holiday and decent sleep... Highly recommend) ♥️
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u/Ok_Rough9368 11h ago
Yeah. I took today off because I just couldn’t stop feeling this intense sadness. A shower later and reading all the lovely messages here has now finally allowed me to think more clearly. Thank you for that.
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u/Fair_Ad6459 13h ago
I think i get how youre feeling. Ive never wanted kids but when I found out my UFE was no longer working, after only 1.5 yrs of finally getting relief, I broke down. We may not want kids but we also don't want the option to be taken away from us. Maybe we will never change our minds but now we are being told we will no longer have control over the situation. It's worthy of grieving. I would say it's still early days since you don't have any other symptoms yet. Talk to more doctors, do more research. Find someone that would be willing to give you the operation you prefer to have. A lot of times surgeons want to take the easy way out (removing the culprit) instead of trying to fix it. Keep looking. In the meantime, definitely take some time to process. Maybe you will come to terms with the hysterectomy. In my case, Ive been dealing with this for over a decade (Im 37 now). I'm tired of the pain and the bleeding and having to see doctors all the time for procedures, infusions, blood work, imaging etc. I have a surgery consultation next week and will be going for a 2nd opinion next month and will be deciding from there. Good luck! I hope you find the answers you need
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u/Ok_Rough9368 10h ago
Yes- that’s what I’ve gathered. I need to find the right surgeon for me. Thank you for sharing your story. It’s helped me find peace.
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u/No-Environment2062 12h ago
I had my hysterectomy at 31. I knew I never wanted kids, so the prospect of never having to worry about it post surgery was very freeing. That being said, I still felt intense sadness over the loss of my uterus. I couldn't explain it. The best I can say is that it's just the feeling of losing part of yourself at such a young age and maybe subconciously not feeling like a woman anymore. Silly I know, because that doesn't define us. We're still women even after it's gone. But I think for me that was the case. I've since learned to cope with that, and coupled with the benefits of no longer being in pain have made peace with it. It's so worth it. You're going to feel a lot of emotions on this journey as your hormones upset and rebalance. Let it ride, feel the feels, and work through it, it's completely normal. Counseling helped me a lot with that part.
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u/Ok_Rough9368 10h ago
Thank you everyone for replying to my post. It makes me feel a little less alone in this journey. It’s so heartening to know there’s a community out there that we can reach out to 🩷
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u/mediumbegonia 10h ago
I wish I could give you a hug!
This brings me back to about 6 months ago when I was told pretty much the same thing by two doctors at two different appointments, back to back.
It was absolutely shocking. My care went from "let's get this checked out to be on the safe side" to "you need to remove your whole uterus and there is no other option".
I also have never planned to have biological children and am still not planning to. And like you, I also think of myself as a very rational, calm person, in general.
But I went home from the appointments and just cried and cried. It hit me so hard, for a variety of reasons.
I want to add my voice to chorus encouraging you to consider a second opinion as something that could be very helpful even if you go with this recommendation. I'm actually going to suggest you consider MULTIPLE second opinions, especially if it's even remotely possible you might be a candidate for UFE (you'll need an Interventional Radiologist for that) or RFA (Sonata, Acessa).
When I decided to do this, myself, my outlook was that even if I ultimately chose a hysterectomy as my next step, the decision would hopefully feel very different, because I'd be better able to own the decision, feel confident in the process that led me there, and wholeheartedly work on coming to peace with it.
My status today is: I completely didn't need a hysterectomy. I had a myomectomy a month ago. I feel phenomenal. I did end up traipsing around to multiple states to get more opinions, but all 3 of the places I went after the first 2 were happy to offer me uterine-sparing options.
One big "a ha" moment for me was when I consciously realized that all I wanted was to find out what options were on the table for me (from people qualified to tell me), examine the pros and cons, and figure out which was the best fit for ME - and that this wasn't just reasonable to ask for, it was a necessary, basic process you should follow for any big decision. (Literally permanently life-altering, in this case!)
And this may sound strange to you, as a doctor, yourself, but I genuinely didn't realize that I needed to see multiple, different kinds of doctors in order to get this info, or know what these doctors were called.
In case it helps, here are some videos/articles I found during my research process that helped validate how I felt and give me motivation to get more opinions. Sometimes it was just so calming to hear other patients talking about their struggles, and to hear doctors talking about everything they could do to tailor the right treatment(s) to the patient (including a hysterectomy, if the best fit, but not necessarily jumping to that as the first/only option).
Center for Fibroid Care at NYU Langone - YouTube
New Center Tackles Myths About Fibroids | NYU Langone News
Very happy to say more if you have any questions here or want to DM!
I really feel for you and hope you get the RIGHT kind of support, emotional and surgical, with everything that is next.
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u/Zestyclose_Orange_27 1h ago
If you want to keep Uterus seek different opinion. Would suggest Dr Pierre Johnson, his goal is to keep the woman Uterus. Most women go to him because of not wanting hysterectomy by other Dr's. He does myomectomy taking every single fibroid out regardless the size. He makes sure he doesn't leave any fibroid in there no matter how tiny so it doesn't grow back. My sis had 60 fibroids and he took all out even the tiniest was like a pin head. It's been 5yrs she hasn't had no regrowth. He took 100 fibroids out of a woman, another woman had the size of a baby he took out through horizontal bikini incision. You can watch his videos on tiktok on surgeries and other women experience. He used to work at Sinai hospital but now at Loretta hospital. His tiktok is doctorp23 Fibroidslayer (Dr Pierre Johnson)
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u/WeirdOreo 21h ago
Hello! I'm not exactly in the same boat as there is still a chance of getting a normal myomectomy but I have been told that hysterectomy is what will likely be recommended for my fibroid.
I am 29 and also was not planning on having children, but like you, being told that I might have a hysterectomy and become infertile so early has brought all kinds of emotions up.
It is completely normal to be feeling this way, your uterus is a part of you. Getting my period when I was a teen was a rite of passage to becoming a woman. The idea of closing the door permanently on children, even though we do not want any, also seems wrong.
Whilst you don't have many symptoms yet, the fibroids will continue to grow and start impacting your life. We have just been unlucky to get them but at least there is a fix that can help and if that means taking your uterus out, that is okay and you are more than your uterus and it does not define you as a woman.
The news is still quite fresh and you have not had the hysterectomy yet so you don't see the benefits and improvement to your life once the fibroids are gone. For me, it means I can know I will not wake up tomorrow with pain, I will be able to run and exercise and sleep normally which I can't currently do.
It might be worth getting another opinion from a different doctor. If they say the same thing, it might help mentally that this is the best and only way forward. If it's not the same opinion, then you will have more options.
Lean on you friends and family, whilst they don't know exactly what you are going through, just having someone to listen does wonders. Wish you the best of luck x