My Hysterectomy at age 35

I had a hysterectomy. It’s still a little surreal, to be honest. I’m going to share a bit about my experience in getting to the point of a hysterectomy, as well as my experience with the surgery itself, and my recovery thus far. Please note that this is not medical advice, and should not be considered such. I am not a doctor, and am not diagnosing or treating here. I am simply sharing my experience and what has worked for me.

My journey toward a hysterectomy began after my youngest was born. She turned 2 a few months ago. When she was still an infant, I felt like my uterus just never went back to what it was supposed to after she was born. It didn’t feel like it was in the right spot and didn’t feel like it was the right size. I also dealt with discomfort, and sometimes, pain. I also had some spotting on a few occasions. Of course, as is the case for most people and with most doctors (and this isn’t even a dig, as I really do like my doctor, and in her defense, she’s not an OBGYN and did order a transvaginal ultrasound for me to look at my cervix), I was told that’s not actually possible. Since I had the wand ultrasound and everything with my cervix came back fine, I pretty much dropped it. I mean, I had wanted information about my uterus, not my cervix, but I saw the futility in trying to pursue that.

The pain continued to worsen, but not horrifically. Enough that I was worried that it could be something scary, though. I found a new OBGYN (I wasn’t a fan of my old one, which is why I didn’t go to her with my uterus woes. I hemorrhaged a month or two after having my daughter, and her office didn’t care. Wouldn’t see me. Told me to set up an appointment for six weeks out. I already wasn’t a fan, but that sealed it for me), and she is incredible. She immediately scheduled an ultrasound, one that looked at my uterus. Sure enough, my uterus was notably enlarged. She told me that it was probably adenomyosis (basically endometriosis, but rather than embedding outside of the uterus, the endometrial tissue embeds into the uterine wall), but that the only way to diagnose with certainty is to do surgery to take a sample. Since my pain, at that point, wasn’t horrific, I opted to not do that. She told me that typically hormone birth control pills are prescribed for adenomyosis. I declined. I think, in general, hormonal birth control is horrible. Messing with hormones is likely why so many women have so many health issues, but also, when I was on birth control pills, I bled nonstop. Nonstop. It was awful. And I tried several different kinds. I had horrible side effects with the paragard, as well. I’ve also spent MANY years working to balance my hormones and have my body work as effectively and normally as possible. So, there wasn’t a chance in the world that I’d risk all of that to “try” birth control pills.

We basically left it as wait and see. After a few months my pain worsened and became more frequent. Then I started getting wrap around pain. I did a ton of research, and found that my best, and pretty much only, bet was to have that bad boy removed. The thing is, most women who suffer with this and endometriosis have a huge fight on their hands to try to get a hysterectomy. Many doctors just won’t do it (so much for body autonomy, eh?), and even if they will, often insurance will stop it dead in its tracks (so great how insurance companies, not doctors, make medical decisions). She seemed pretty unphased by my asking. She scheduled an exploratory laparoscopy to look and see what was in there. Once it was scheduled a nurse called and went over things with me. She mentioned that the doctor would be burning any endometriosis she found in there while she was exploring. That got me thinking that I’d rather have my hysterectomy and endometriosis (if she found any) burned at the same time, not have two separate surgeries with two separate recoveries. So, I scheduled another appointment to ask for a hysterectomy straight up. I took my husband with me for support and to stand up for me if there was pushback (I’d had a LOT of pushback from my old OB about my VBAC and various other things, and for some reason when my husband was there and stood up for me, she didn’t push back), even though I’d had nothing but great experiences with this doctor. So many women are told no that I wanted to be prepared. To my delight, there was no pushback at all (have I mentioned she’s AWESOME?). And she had her office start the scheduling of the surgery!

Now, when you know you’re going to have surgery, and you have to wait weeks to find out your date, and there’s just a lot of time, you start to second guess your decision. But my body decided to make it crystal clear for me by rapidly increasing the pain level and duration. I was having constant pain. It never stopped. It ebbed and flowed in intensity, but it was always there. I also started having trouble with my bladder and bowels, and thought it was either my monstrous uterus pressing against them, or endometriosis. So any time I’d start to second guess myself, my constant pain and inability to use the bathroom were great little reminders that I was doing the right thing, even though recovery with a two year old in tow would be a bit of a challenge.

I had my surgery. It was a much shorter surgery than she expected, as there wound up being no endometriosis. It was a laparoscopic robot assist vaginal hysterectomy, also removing my cervix and fallopian tubes, but leaving my ovaries. My uterus was more than double the size it should have been, and was “boggy,” or squishy. My uterus was sent in for testing, and thankfully no cancer or anything else scary was found. After surgery I went to a recovery room. Laparoscopic hysterectomies are outpatient surgery, so I sat in a chair with the most glorious hospital gown that hooks to a tube and heats the entire gown, while I waited for my husband to arrive. To my happy surprise (surprise mostly because I was drugged and forgot that my dad was coming), my dad walked in with my husband. I can’t even tell you how happy I was to see them!

I was nauseous, but I had a neat little patch behind my ear for nausea, so I didn’t wind up vomiting, which was great. I did have a hard time eating, though. After a while, the nurse informed me that if I couldn’t get my pain level lower, use the bathroom, eat and keep it down, and get hydrated, I’d have to be admitted and spend the night. I was devastated. My doctor came in to visit and let us know she was advocating for me to be released. The nurse increased my IV drip to try to hydrate me. I slowly worked at eating a fruit cup. Finally, the fruit cup was gone, my IV bag was empty, and I successfully used the bathroom! I was free!

Recovery has been a bit of a trip. My doctor did a great job of getting the gas out, and I walked a decent amount the first couple of days after surgery, so I wound up not really having any gas pain. When I had my appendectomy five months ago, the gas pain was unbearable in my shoulders, and lasted a solid two weeks. I am so grateful that I didn’t deal with that this time around. That said, I’d convinced myself the recovery would be about the same. It’s not. It’s not the same at all.

I knew I’d be swollen and bloated, but I didn’t expect to feel so fragile and like my insides could just fall out at any moment. I absolutely hate having anything touch my abdomen, so a compression belt wasn’t even on my radar. Except…the feeling didn’t go away. After 3 days of feeling like that, I ordered a compression belt. It was a game changer. I can’t even believe what a difference it makes. My swelling went down dramatically using it for just one day. And it helps SO much with pain/soreness. I thought it might help a little with the swelling and help me feel more secure, I wasn’t expecting the dramatic results with the swelling, and definitely wasn’t expecting it to alleviate pain the way it does. I wear it all night every night, but only wear it for a few hours at a time during the day. When I get sore, I put it on and it helps immediately. (photo is 1 week post op)

Aside from the bloating and soreness (the pain really hasn’t been bad at all), recovery is kind of a bear. I’m incredibly wiped incredibly quickly. I need to lay down to recover from showering. I’m only up for a few hours at a time, at most, and just sitting around exhausts me and I have to lay down. I can’t lift anything. I can’t drive. I’m sore. If I dare do anything even remotely physical, I wind up completely wiped and extra sore. It’s frustrating and I feel like a giant burden all of the time. I’m incredibly lucky to have my parents and my aunt helping with my two year old. They watch her during the day while my husband is at work. They also pick up my older daughter from school every day. It is very frustrating and almost embarrassing to not be able to do anything, but I am so, so thankful that I have the support and help that I do. I don’t know how anyone could have this surgery with a toddler without having help like this.

My two year old has been frustrated with my not being able to pick her up, and my 10 year old worries about me constantly. My husband is doing EVERYTHING, and I don’t even know how he does it all. He’s amazing. And is the most supportive and encouraging partner, ever. I know he’s exhausted and frustrated, but he always treats me with love and kindness, and is always accommodating my needs right now. I feel like an infant, really.

As is typically the case, this is quite long winded. But the moral of the story here is that adenomyosis is pretty brutal. My hysterectomy went very well. My recovery is very, very slow, but going well. And GET A COMPRESSION BELT IF YOU’RE HAVING A HYSTERECTOMY. Yes, I just yelled that. But the compression belt is magical and you need it and your life will be so much better with it, trust me. Now, I try to patiently wait while I recover. It will be nice to get some energy back, hopefully sometimes very soon. For now, I’ll respect my body’s limitations and spend my days resting and healing.

27 Comments

Nancy on August 26, 2019 at 1:16 am

Thank you so much I am calling tomorrow to schedule mine and I am really worried and I have millions of questions in my head!
God bless you!
How long did the surgery take if u remember?
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- admin on September 3, 2019 at 2:52 pm
  
  Hello, Nancy! I hope your appointment went well. I don’t remember how long it took, but know it was well within the 2 hours they’d projected. I’m so happy I had it done; it really does make things better. Just make sure to buy a compression belt! I still use mine! =)
  Reply
- Autumn Waller on September 14, 2019 at 4:21 pm
  
  Thank you for sharing. I’m going in 2 days for my surgery. I had to fight for it too. Based on this, I’m getting the compression belt! Thank you.
  Reply
Nicole on September 10, 2019 at 12:59 am

I have an appointment scheduled for the 20th to talk about this very issue. Just diagnosed with adenomyosis via ultrasound. Scared but also feel like there is hope too! Thank you for sharing! It’s hard to find information on people’s experiences.
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Alessandra on September 17, 2019 at 11:10 am

Thank you so much I have my surgery scheduled for September 30,2019. I’m so scary about. 😟
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Brandy on September 21, 2019 at 5:29 pm

Thank you for sharing your story. It sounds so much like mine. I have my surgery scheduled for November but I am most nervous about the recovery.
Wish me luck
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Lois on November 4, 2019 at 10:07 pm

Would you mind telling me what kind of compression belt you got? I just had my hysterectomy on Halloween. I am super swollen today.
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- Crystal on August 5, 2020 at 2:41 pm
  
  Hello ladies! I am at the hospital now for pre-op. I have done quite a bit of research and found this belly binder on Amazon. It has a ton of great reviews! Hope it helps.
  3 in 1 Postpartum Support – Recovery Belly/waist/pelvis Belt Shapewear Slimming Girdle, Beige, One Size https://www.amazon.com/dp/B01EVGLMM8/ref=cm_sw_r_cp_api_i_qZVkFbNPHNMV7
  Reply
  - admin on September 28, 2020 at 6:47 pm
    
    Thank you for this! I am so sorry! My health has taken a bad dive, and I’ve not been able to even look at the blog. I am so sorry!
    Reply
Emma on November 20, 2019 at 2:44 pm

Hi can you recommend a compression belt having my surgery in jan thanks xx
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Victoria Castañeda on December 8, 2019 at 7:46 pm

I have been dealing with this for about 3 years now… but the actual bleeding for MONTHS at a time… today is actually day 15 of bleeding and LARGE blood clots being passed (gruesome, I know). The first time lasted for about 3 months… and that was after the Depo shot to try to stop it (didn’t work)… so I am HOPING and praying that I can get a hysterectomy soon as well. How long was the healing process.. I’m trying to figure out how long I’ll be out of work..
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- admin on February 17, 2020 at 9:32 am
  
  I’m so sorry! Life has been really trying lately, and I’ve been neglecting the blog. I really hope you’re able to get the surgery, too! I’m going to be honest: it was rough. And it was a lot harder than I’d anticipated. I, for some reason, had convinced myself that it would basically be the same healing process as the emergency appendectomy I’d had five months earlier. It wasn’t. It’s a MUCH bigger surgery, and requires a lot more healing. But, right around the 8 week mark I was feeling pretty darn good, regarding the surgery. I was no longer injuring myself by just doing normal things, I wasn’t in pain, etc. And I felt strong and confident in my healing at that point. I hope that helps!
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Kate on December 14, 2019 at 11:56 pm

I’m 37 and have mine on Thursday, a total hysterectomy and I have a six year old and one year old that weighs thirty pounds and I am super nervous about recovery. Thank you for posting this! Any other tips now that time has passed? Thank you!
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- admin on February 17, 2020 at 9:29 am
  
  I’m so sorry! Life has been really difficult lately, and I’ve been neglecting the blog. I hope the surgery went well and that you’re well on the road to recovery!
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Tina on January 9, 2020 at 1:32 am

Hi, do you remember how many weeks it took for you to be “ok”. To start living life normal without fear of hurting of damaging anything? I am on week 3 and I thought my recovery would be further along. Thank you !
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- admin on February 17, 2020 at 9:28 am
  
  I’m sorry, life has been really crazy, so I have been neglecting the blog. It took about 8 weeks before I really was okay and didn’t accidentally injure myself. At one point I thought I was good, and then wound up hurting myself just pushing the grocery cart. I think that was around 6 weeks post surgery. I was pretty defeated by it, and was sure it was an indication that I was never going to fully heal. But then within just a couple of weeks, I was *so much* better. Hang in there!
  Reply
admin on February 17, 2020 at 9:37 am

Thank you all for your comments! I am so sorry for the delay in response. Things have been really crazy and difficult lately, and that’s resulted in me stepping away from the blog for a while.

Really, any band will work. I honestly still wear mine every night. Or, I should say, I wear it every night, again. It’s for abdominal issues likely related to MS, not the hysterectomy, though. And even though I got the cheap one, it’s still going strong. So, I honestly think any surgical band/belt will be helpful.
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Sally on February 25, 2020 at 12:02 am

Thank you for sharing your story. I have my hysterectomy scheduled in 6 weeks. Your story makes me less nervous to hear your recovery went well and the bumps you encountered. 🙂
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Sam on August 10, 2020 at 11:54 pm

I was diagnosed with uterine adenomyosis 3 months ago via ultrasound and am currently waiting on my surgery date for a partical hysterectomy! I’m 25 with a 4yr old and a 2yr old
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- admin on September 28, 2020 at 6:52 pm
  
  I’m sorry you’re having to go through this. My piece of advice for having a hysterectomy while you have a toddler: make it SO CLEAR that mommy’s body is OFF LIMITS. =) Really. I also taught my daughter to climb into the van herself, and use a stool to climb into her carseat, because I couldn’t lift her. Best of luck!!! If you get a chance, I’d love to hear back from you and hear how it all went.
  Reply
Ericka on September 2, 2020 at 7:14 pm

Thank you so much for writing this. I’m curious how you’re feeling now. How long has it been since your surgery. I have mine scheduled for November 5th. I’m so anxious but have recently been told I have Adenomyosis and I already have endometriosis and also found I have at least one hernia. They are supposed to be taking care of the hernia at the same time as the hysterectomy. This blog was very helpful. I have a 4 year old and a 1 yesr old and they are both so clingy. I’m worried they will hurt me just being clumsy little boys. Lol.
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- admin on September 28, 2020 at 6:56 pm
  
  Hello! My biggest piece of advice is to make sure you make it clear that mommy’s body is OFF LIMITS. And I know that’s hard! I also taught my toddler to climb into the van, and use a stool to climb into her carseat. I definitely could not lift her. Months after the surgery I hurt myself pushing a shopping cart. =/ Lifting is DEFINITELY not something to mess around with.
  
  I am not a good example. My health has taken a huge and drastic decline, but it’s unrelated to the hysterectomy. That, as far as I can tell, all went well, and I haven’t had issues I can for sure attribute to adenomyosis or endometriosis since. Just make sure to REALLY baby yourself. And for the FULL six weeks, at least. It was more like 8 or 9 weeks for me.
  Reply
Ashley on September 26, 2020 at 2:20 am

Recommendations on compression belts?
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- admin on September 28, 2020 at 6:57 pm
  
  Sorry for the delay! My health has declined and I’ve not paid any attention to the blog. I honestly just ordered the cheapest three panel I could find on amazon. I still use it nightly. But I believe that’s due to gastroparesis at this point, not anything to do with the hysterectomy, anymore.
  Reply
Avalon on September 27, 2020 at 5:39 am

Hey. At age 32 i had just did my hysterectomy two weeks ago. Because of my recovery speed is going way faster than the norm (more so didn’t experience any pain since waking up from post surgery) to the point my doctor is a bit weirded out lol. Whilst looking for some more information online regarding self care post surgery, i stumbled unto your blog. I guess i am glad that you wrote this…. somehow it calm down my current anxiety and helpful tips on coping. Again thank you for explaining your experience. God bless
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- admin on September 28, 2020 at 6:59 pm
  
  Avalon, I hope the pain stays entirely at bay for you! Thank you for your kind words. I’m glad my blog brought you some peace. That was my hope in writing it. =) Here’s to a quick and easy recovery (just remember to still really baby yourself for the recovery period to avoid tearing anything…EVEN if it seems like you’re all back to normal =) )
  Reply
Earn Online on October 14, 2020 at 7:14 pm

I am extremely inspired with your writing abilities as neatly as with the layout in your blog. Is that this a paid theme or did you modify it yourself? Either way keep up the excellent high quality writing, it is rare to see a great weblog like this one nowadays.
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My Hysterectomy at age 35

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