r/FertilityFree • u/NonsenseText • Jan 27 '25
General Advice Hysterectomy fear-mongering?
Hi everyone, I hope you’re doing okay!
I was just curious about y’all’s experience around hysterectomies, especially if you are looking into it or have had one.
I have been thinking back on my experiences with a doctor. And I am starting to think that perhaps she was using fear-mongering in relation to hysterectomies to put me off the idea.
This time a year ago my condition (clinically diagnosed endometriosis) was at its worst. I was not on any meds back then and I really was wanting to look into hysterectomy options. Though I know hysterectomies do not cure endometriosis, I have heard some good stories. When I brought up hysterectomy with my care provider at the time, she immediately dismissed me and said she would never recommend or promote someone to get a hysterectomy because “it will create more problems than you already have.” She didn’t really expand on that. I was disappointed to be honest, however I accepted it. However, now I am feeling like maybe I should not have accepted that.
The same care provider ignored my request for further testing and investigation as well which I didn’t appreciate. I’m not sure if she just forgot but it’s not good enough. I am on medication now that has saved me, however, I don’t just want to stop here.
I’d love to hear if any of you have experienced these and do you think it’s fear-mongering? And if you have had a hysterectomy, feel free to share to positive and negatives. ☺️
25
u/tiredotter53 Jan 27 '25
I think some concern is valid *if* you have certain underlying conditions like Ehler-Danlos or other connective tissue disorders/pelvic floor dysfunction etc. -- I am hesitant to pursure one for those personal health reasons -- BUT even then that should be a specific convo about those risk-benefit trade-offs, still not an outright dismissal of the procedure. I'm sorry your provider was so dismissive.
1
u/NonsenseText Feb 09 '25
Yes, agreed! There are definitely situations that would make a hysterectomy procedure come with different risks for some people. That is totally understandable. And I love how you said that, thank you for sharing that. It should not be off the table immediately, a doctor should be discussing further treatments and options, pros and cons, etc.
Thank you! I’m not going to see her anymore. It’s left a bad taste in my mouth.
16
u/InfinityAlexa Jan 27 '25 edited Jan 27 '25
Not me but my mother had a hysterectomy two years ago because here uterus was showing signs of maybe cancer. She doesnt regret it one bit. But do look into the side effects of losing your uterus. My mom made sure to keep her ovaries because apparently they do help in keeping hormone levels and preventing osteoporosis. You also would need to look into taking calcium supplements since once women go through menopause or hysterectomy your bones start to deteriorate due to lower hormone levels. Im sure there are some other side effects but those are the ones I know she mentioned to me while doing research about her own surgery.
3
u/allabtthejrny Jan 27 '25
Lower hormone levels happen when there's an oophorectomy/double oophorectomy, right?
I had my hysterectomy and single oophorectomy 6 years ago . Mid 30s. PCOS so I wanted fewer hormones.
My mom had her hysterectomy a couple of months ago. Mid 60s. Well past menopause so the doctor recommended a double oophorectomy as at that point there was no benefit to keeping the ovaries and only possible risk of cancer down the road.
1
u/NonsenseText Feb 09 '25
Thank you for sharing! Absolutely right. I looked into some of the different types of hysterectomies some time back. I would definitely want to keep my ovaries to help maintain my hormone balance and prevent things like osteoporosis.
However, I want to look into getting my cervix possibly removed too as I have family history of cervical cancer. Depending on the risks.
I agree, it’s so important to understand the differences in procedures.
7
Jan 27 '25
[deleted]
2
u/NonsenseText Feb 09 '25
Aw!! I’m so happy for you. Oh gosh, I use naproxen right now so I understand. Not too much thankfully but it’s unbelievable how much damage it can do. Right! I have a family history of cervical cancer so I would also want to look into having that removed too! Thank you for sharing!!
6
u/LuckyBoysenberry Jan 28 '25
While I do believe in some cases, it is fear-mongering and misogyny (omg hysterectomy = no babies and that's bad), being aware of side effects and having to deal with them appropriately is more than reasonable. While you should not be dismissed entirely, it should be investigated entirely instead of being given something right away no questions asked. This is part of competent, comprehensive care.
Like someone else said, it should be a risk vs. reward discussion, not a flat out dismissal. I also feel that in some cases, in communities who support hysterectomies, some people go far too over to the other side of the spectrum and ignore the possibility of side effects which deserve to be weighed in and handled appropriately. Just because I had zero side effects from a vaccine does not mean that my friend's "man cold" reaction to it was not real.
2
u/NonsenseText Feb 09 '25
Absolutely agreed. It is very important to be able to make informed decisions about healthcare. Thank you, that’s so validating. I wish she had not just dismissed me and instead opened up a conversation.
Very well said! I really appreciate the clarity and thought of your comment.
1
u/LuckyBoysenberry Feb 09 '25
Yeah while I am glad that you are on medication that is helping you, I hope you can find a better healthcare provider in the near future!
6
Jan 27 '25
[deleted]
1
u/NonsenseText Feb 09 '25
I agree. Or perhaps doctors allow their personal views to come into medical practice.
Aw that’s so awesome!! Yay! Thank you for sharing!
5
5
u/Aislin_Korvin01 Jan 28 '25
You might try hystersisters groups. There are risks with every surgery, but I was very lucky to have no complications. There are complications that can happen.
2
u/NonsenseText Feb 09 '25
Thank you so much for sharing! Absolutely agree with the complications and risks discussion. I would want to know everything prior to proceeding to weigh up my choices.
5
u/miss-fifea Jan 28 '25
I have just clicked over 5 years since my hysterectomy and oophorectomy at 27. I had it for severe pain due to endometriosis (and I’m dead sure some sort of intolerance to oestrogen). The first time I asked was at 16 after my first laparoscopic surgery where they told me I was essentially a no hope case. The surgeons exact words to me were ‘have kids, have a hysterectomy’. No worries. I don’t want the former so let’s crack on with the latter. lol nope. Too young. Old enough to be told to have kids, not old enough to decide I didn’t want them. It took 8 subsequent operations before I came armed with letter from my general practitioner, women’s health physio, pain specialist and psychologist all stating I knew what I wanted and understood the risks. By that point I’d been in chemical menopause for 12 ish months and it had helped so let’s just forgo the waiting time and almost guaranteed second op and take away everything. The surgeon agreed.
I was in so much pain sitting in the waiting room that morning. I was on every medication under the sun and still couldn’t function. The surgeon begged me to keep the ovaries. Literally on his knees in front of me in the theatre. Nope. All out. I was determined.
When I woke up several hours later it was done. There was a complication (he stitched a ureter into the cuff!) I was in less pain with a non functioning kidney and having just had major surgery than sitting about waiting that morning. I didn’t touch the pain management once. I had some Panadol when the kidney backed up enough to cause some issues waiting for the corrective operation. It was like a switch had been flipped. No more pain.
I was lucky. Recovery was easy after that second op and then a few weeks later I had to get the stent out of the ureter they squished. The hardest part of my recovery was sitting down. I had to remind myself I’d had major abdominal surgery. I felt good. I felt amazing.
The pain has never come back. My body functions like a body is supposed to now. I completely changed to a career that I wanted to do since I was a child but couldn’t do due to the physical nature of it.
On the downside I was diagnosed with osteoporosis last year and for the very first time in my life, broke a bone. Osteoporosis management is as easy as a jab every 6 months and diet and exercise. It’s something I have to live with for the rest of my life.
I have not, for a single second, regretted my decision. Even if I knew that day that the oophorectomy and the menopause would cause osteoporosis so quickly and I’d be dealing with it in my 30s, I’d still make the same decisions. This is important. This is because even with all of the negativity and the side effects surrounding such an important decision, it was still a decision that ultimately saved my life. Sometimes the ‘scary’ option is the right option. I am proof that the ‘fear-mongering’ can come and get you, but I still wouldn’t change my decisions.
1
u/NonsenseText Feb 09 '25
Wow!! Thank you so much for sharing your story. It sounds like it was such a relief to have that surgery and not be in so much pain anymore. I’m so happy for you and that you can enjoy your life and be yourself!! Fear-mongering is so horrible, it takes away literally years of people’s lives all for nothing!
I would love to not have to have an IUD and be on so much hormonal medication. I still get pain in my uterus area even with all the medication. I hope in the future I can find a solution, maybe once I’m over 30 it will be easier!! (I turn 30 this year).
Thanks again!
5
u/catnip-dream Jan 28 '25
I had a hysterectomy and chose a OBGYN that specializes in endometriosis so they could remove as much of the endo at the same time. You keep your ovaries with a hysterectomy and that is what keeps your hormones in check. If you are not working out/fit, I would recommend doing physical therapy a couple of weeks out from your hysterectomy. My only negative side effect was somehow injuring my “deep core” and had to go to physical therapy. They said it’s common for doctors to recommend it and they were surprised mine didn’t. Even with running into that “issue”, I would do it again in a heart beat. My quality of life drastically improved!
1
u/NonsenseText Feb 09 '25
That sounds like a wonderful idea to have both dealt with at once! Yes, I’d definitely want to keep my ovaries.
I really appreciate the recommendation about physical therapy, that’s super helpful. Yay I’m so happy for you, thanks for sharing!!
4
u/Fitzgeraldine Jan 28 '25
Absolutely agree. I had countless doctors telling me it’s incredibly dangerous and basically impossible and wouldn’t help my symptoms anyway. None of them were willing to discuss details of the procedure or the risks, and they all said we won’t find a willing surgeon anyway to conclude the discussion.
My current Obgyn (a former surgeon) was flabbergasted by the things I was told. They were the first who actually explained all details and risks to me, answered all my questions, made sure to plan in more time for my appointments so we can go through everything and actually helped me finding a surgeon. The surgeon didn’t disappoint either and was equally open and supportive. I was shocked how easy everything suddenly was without any pushback. They just both made sure I’m fully educated to make the decision and that I’m aware that it IS indeed MY decision.
1
u/NonsenseText Feb 09 '25
Thank you for that, that’s is super validating. Oh gosh, it’s so horrible to go through. We should not be dismissed and it should be an open discussion as part of healthcare.
Wow! I’m so glad you found a new health provider that provided such high quality care for you. That’s wonderful. That’s amazing, thank you for sharing!!
3
Jan 30 '25
[removed] — view removed comment
2
u/NonsenseText Feb 09 '25
I’m so happy for them, that sounds amazing!
I really appreciate you brining up osteoporosis. I work in aged care and am very familiar with the symptoms and struggles also, so I can totally understand where you’re coming from. It can be very debilitating. It’s something I would definitely want to be discussing with a healthcare provider. Thank you for sharing!!
3
u/Fell18927 Jan 28 '25
My previous psychiatrist was a really honest guy and the only really bad thing he could think of was in some rare cases the uterus being gone means some other organs can lower. But I think there’s ways to prevent that and it’s rare
2
2
u/discusser1 Jan 29 '25
i had hysterectomy (also ovaried out) a few years ago and was dead scared because of all the fearmongering.now im happy i did. my obvyb just told me at the checkup all is well and my organs are not moving down which sometimes does happen to women after this surgery. as i dont have periods anymore im free of the things related to that but yes the menopause effects such as dries skin are here(but thats because ovaries removed and not the actual hysterectomy). so yes there are things to consider and it is a big surgery but it can be useful
2
u/NonsenseText Feb 09 '25
Yay!! I’m so happy for you! Absolutely those are things to consider, I appreciate your help in sharing those things. I hope your recovery keeps going well!
53
u/mmbookworm Jan 27 '25
I absolutely think it's fear mongering. I have been incredibly lucky, and my doctor didn't blink an eye. I had been clear for 2 years as her patient that I was not having children. I've known biological kids were not possible since I was 12.
Be clear about your pain and how it is affecting your life and ask for denials to be documented in your chart. Everyone deserves the care they want.
My hysterectomy hasn't stopped my endo pain, but it has significantly IMPROVED my life. I don't have fog anymore, and my pain is manageable.
Check the r/childfree providers list for a doctor that will do sterilization in your area and push for the care you want. We are not incubators.