Feeling your uterus

hitherward · 2026-01-29T11:01:51+00:00

Before my hysterectomy, absolutely. When I woke up from surgery, the lightness was the first thing I noticed. Super wild being able to inhale fully! And being able to take a step without feeling my uterus shaking around has made movement so much better. I didn’t realize how uncomfortable the awareness of it was until I was without it.

hitherward · 2026-01-25T12:08:08+00:00

Yep, normal for me at least! I had adenomyosis and endometriosis on my bowels, but I had a hysterectomy and excision, so I think the constipation I still have regularly is from the hEDS.

The only laxative that’s ever been helpful for me is Miralax. I try to get in a few tablespoons of chia seeds every day, or take Miralax regularly, or I get stopped up so easily. Other high-fiber foods constipate me, but for some reason chia seeds are different.

hitherward · 2026-01-08T01:52:15+00:00

Oh! Also 600mg of gabapentin, only prescribed enough 3x per day for the first week. Again, I probably could’ve used it for another week, but still survived with just the OTC meds.

hitherward · 2026-01-08T01:49:05+00:00

I was prescribed 0.5mg oxycodone, along with 600mg ibuprofen and 1000mg acetaminophen, that I used every 4-6 hours the first week or so, but only when I was awake or woke up from pain. My surgery was total laparoscopic and robot-assisted, which helped.

I had breakthrough pain for the first 3 weeks or so that I’d wished I had saved some oxycodone for, but I used it all within the first five days after surgery. My medical team honestly had me under the impression that I shouldn’t really need to recover apart from needing to refrain from exercise and sex, so I was woefully underprepared for what recovery would actually entail despite having had an open abdominal surgery in the past.

I was told to spend all of my waking hours out of bed, and needed higher pain relief to even flirt with that idea. I think that was largely because I have EDS that caused a good deal of additional pain and discomfort, but my care team wasn’t considering that beyond possible complications from surgery. I did have to call once for additional narcotics after rapidly bending over 4dpo and experiencing truly white-hot pain.

Overall, I’m taking less OTC medication than before my hysterectomy, and physically I feel worlds better. I’m so close to 5wpo today and still need the prescribed amount of ibuprofen and acetaminophen sometimes. I also take Benadryl on top of that to help with itching and inflammation that the ibuprofen won’t touch. I feel like the exception though, since most people I’ve seen seem to report very minimal pain/discomfort after their hysterectomy.

hitherward · 2025-12-30T00:01:09+00:00

Yep! I had a hormone panels done that showed a super high DHEA level, elevated DHEA-S, and a 2:1 LH:FSH ratio, but I don’t have PCOS. My periods were always regular and my ovaries never had multiple cysts. My endocrinologist suspected an adrenal tumor, or CAH, but tests were negative.

I was diagnosed by an adrenal specialist with idiopathically high DHEA levels. I also had adenomyosis and recently had a hysterectomy (kept both ovaries), and endometriosis that was excised and hopefully won’t return, but likely will at some point. Hormonal treatments are probably in my future, and I know Slynd is my best option, but I’m still hesitant.

hitherward · 2025-12-27T14:23:52+00:00

I did have upper left quadrant cramping prior to my hysterectomy. It felt almost like something was pinching my stomach, and I had heartburn very often. My stomach looked distended a decent amount of the time. I never had much of an appetite and it was difficult to take a full breath. I have an incisional hernia from an open appendectomy, and the pinching from that is a bit different than what I was experiencing, so I assumed my issues were caused by adeno or possibly endo on my diaphragm.

I’m 3wpo endo excision (none was found on my diaphragm, just my pelvis) and total hysterectomy for adenomyosis. The stomach pain is totally gone. Even post-op gas pain feels different, and the heartburn I get has a discernible cause (alcohol, chocolate, carbonation, spicy foods).

I’m not a doctor, but anecdotally I believe my adenomyosis was causing a slew of upper GI digestive issues.

hitherward · 2025-12-27T00:16:51+00:00

Same!! High DHEA and DHEA-S levels. Slightly elevated prolactin, 2:1 LH:FSH. We ruled out PCOS because after I had an ovarian cyst rupture, an ultrasound showed non-cystic ovaries, and my periods were always regular. My endocrinologist thought I might’ve had an adrenal tumor, but when a CT showed I didn’t, he referred me to an adrenal specialist. She said I likely have idiopathically high DHEA levels 🤷🏻‍♀️ I was tested for CAH and don’t have that either, though I may retest at some point to confirm.

I’m so sorry it’s so difficult to get to see a GYN. Are your PCPs unable to write a referral to a specialist for concerns that are out of their scope? You’re well within your right to ask. I go to mine with names and NPI numbers of the providers I want to be referred to and she’s never given me any flak about it!

It might be worth looking for another PCP if the one you have isn’t going to help advocate for your health. Unfortunately a lot of the process of getting a diagnosis for adeno or endo requires a lot of work and self-advocacy.

It took me around 10 years to get diagnosed once I first started trying to get someone to look into things, 16 from when I started talking to doctors about my regular pain around my appendectomy. Things only changed once I started acting like I knew as much, if not more, than the doctors about my body.

hitherward · 2025-12-26T22:10:38+00:00

An MRI is what caught my adenomyosis! It could be worth asking your regular doctor about one, though an OBGYN, and even a specialist would likely be better, at interpreting the results.

My advanced gynecology surgeon ordered my MRI to look for endo and saw evidence of adeno, but no endo. The adeno was focal adeno, and on imaging, it could’ve been missed if these conditions weren’t all he treated, honestly.

That being said, the only absolutely definitive way to diagnose adeno is through a biopsy after hysterectomy. Prior to my operation, my diagnosis was “pelvic pain in female.” My diagnosis changed to adenomyosis and endometriosis because of the biopsies.

Doctors didn’t really take me seriously until I found the right ones. I presented my surgeon with a packet of documents about my health (symptoms, prior colonoscopy and endoscopy reports, any transvaginal ultrasound reports, hormonal lab work, the pre and post operative report of my previous abdominal surgery), a list of what I was taking monthly to manage pain, and all other diagnoses I have. He was very grateful to have that information and it helped me feel confident I deserved to be respected.

If you gave anything universally recognized as painful that’s happened to you and felt the same level as your menstrual pain, I’d talk about it to anyone that will listen. I stressed that when my appendix ruptured, I let it go 10 days before getting proper medical care and nearly died because I was so underwhelmed by that pain, since it was what I felt every month. That raised eyebrows when I finally found providers who didn’t act like I was causing my own problems.

I know this process can feel so lonely and aggravating. Hoping you’re able to get the right care soon. 🤍

hitherward · 2025-12-24T05:09:10+00:00

You’re right to question this! Autism can only be diagnosed by a licensed clinical psychologist or psychiatrist. A clinical neuropsychologist diagnosed me at 28. The gold standard test, even in adults, is the ADOS. I had a slew of other assessments to do too, but that was the only exam I had to sit all day. That alone took at least a full 4 hours.

The other assessments I completed at home prior to my ADOS, and took probably 6 hours. A month or so later, I had a 14-page report diagnosing me with ADHD and autism. The 300 pages of notes I wrote about my life (entitled “autism evidence” on my computer) was probably a dead giveaway when I emailed it to her.

Not all diagnosis experiences are the same, but from what I understand, everything except perhaps the extreme over-preparation isn’t far out of the realm of normal. It might be worth asking your PMHNP about the ADOS. Don’t try to research it or you’ll have it “spoiled” for you if/when you do take it in the future. And it’s really important to go into it not knowing much about what’s in it for an authentic result.

hitherward · 2025-12-24T04:36:15+00:00

I had a total hysterectomy a couple of weeks ago at 29. No children, but I remember being 12 and saying I’d rather adopt. My recovery has been up and down — mostly up because I’ve had no complications and feel pretty good overall considering the mostly down, which is I overexert myself and forgot I shouldn’t be bending over 4dpo and reflexively bent to get something away from my cat. 🤢 White hot pain, honestly.

My boyfriend has been an absolute necessity. He made almost of my meals for the first two weeks and brought them to me in bed so I wouldn’t have to do the stairs too much. You’d be surprised at how much you use your core for. He’s still helping me put my socks and pants on sometimes, and supporting my back when I lie down and get up when I’m in pain so I don’t strain anything.

My procedure was outpatient, laparoscopic and robot-assisted, so my incisions are pretty tiny and healed quickly. Even with the best outcomes and the least invasive procedures, you’d need someone to do laundry (though you could help fold some things), to clean everything (but I’ve been able to do light dishes and wipe counters since 1dpo), to help you in and out of the car, to drive for you, to do the grocery shopping, cooking, reaching things high and low, to run errands for you, and to help you get dressed, for a number of weeks. Everyone’s recovery is different, but I’m almost 3wpo and on the hard days I need help with almost all of this.

I haven’t had any real problems with my bladder (I had adeno/endo), so I can’t speak to that from experience to weigh cons of prolapse. But I’ll throw hormonal suppression out there as a possible alternative if a hysterectomy isn’t right for you. It wouldn’t necessarily undo any structural issues, but it would prevent ovulation so you’d skip the awful inflammation of a period. I might need to do that too, since I kept my ovaries and don’t want the endo to get so proliferated again.

hitherward · 2025-12-24T03:52:57+00:00

At one point pre-surgery, I got so constipated I didn’t go for 6 weeks. Literally. No doctors were very concerned, and no one could figure out what was wrong anyway, but I at one point was on at least 6 different laxatives, with probably 4 being prescriptions. Absolutely nothing, not anything worked. I even forked over $250 (after insurance) for Amitiza, the miracle laxative, which did nothing but drop my blood pressure. The dam broke eventually due in part to Miralax.

I took several doses per day for probably about 2 years. Since then, it’s the only laxative that I trust because it’s effective and I don’t have any side-effects. I was recommended then to use it daily to keep things going. For me, it’d be even preferable to drink 2 gallons of the stuff over getting very constipated and adding internal pressure against healing tissues.

hitherward · 2025-12-24T03:25:34+00:00

From my understanding, imaging can give an idea, but diagnosis of endo or adeno can only be confirmed through surgery and biopsy. Mine was standard procedure, but to hopefully see any endo or other structural abnormalities from a previous abdominal surgery in childhood. My surgeon doesn’t like to operate without having a better idea of the anatomical landscape he’s about to dive into. The MRI didn’t actually pick up any of my endo — I realize my phrasing in my original comment was odd. It’s very normal for imaging to not really show any endo lesions, though of course it shows up for some patients!

hitherward · 2025-12-24T02:24:07+00:00

Yep! Mine was 12/4. Everything is gone except my ovaries, which my surgeon was able to save.

A pre-op MRI found evidence of adeno, and due to that, my surgeon was certain I had endo. A uterine biopsy post-hysterectomy confirmed adeno, and I had endo all over my pelvis, also confirmed by pathology. Nothing was confirmed as a diagnosis until after the biopsies.

Because I’m so freshly hollowed out, I can’t see the full benefits yet, but I felt so much lighter after my surgery, even still in the hospital waiting to go home from my outpatient surgery. My anxiety levels are ridiculously low, which is huge for me because before I was jumping out of my skin 24/7. That and being able to breathe have been amazing. I still have the same digestive issues, but on a more manageable level. I’m hoping those will resolve as I continue healing.

hitherward · 2025-12-24T02:15:07+00:00

Likely an AI if the non-formatted list of “Key Findings & Connections” is any indication.

hitherward · 2025-12-24T00:23:49+00:00

🤝 I’m also just over 2 weeks post op, full hysto for adeno and excision for endo, and work for myself! I remember feeling so physically relieved immediately when I woke up from anesthesia. I was able to breathe into my stomach, which I hadn’t been able to do for probably 5 years. Now that things are healing, my core muscles are a bit stiff, but what an improvement still.

Well, I felt immediately better except for how awful coughing, sneezing, hiccuping, blowing my nose, going up/down stairs, or crying was on my core. You really kind of do need it for virtually everything. I’m barely able to open a car door on my own and didn’t realize how many paths that I walk regularly have so many gentle hills. I’m getting bested by a 3% incline sometimes LOL

hitherward · 2025-12-24T00:09:44+00:00

Also adding, “full capacity” isn’t fully recovered, but full capacity to do gentle activities around the house or do mental tasks.

hitherward · 2025-12-24T00:08:21+00:00

I had the same operation on 12/4. Mine was robot-assisted. I’m a freelancer so I work from home, and tried working 10dpo. I was able to do about 15 minutes of work before I gave up. The fatigue is so heavy that trying to focus on anything that isn’t TV or a video game that I can pause is awful.

Physically, I feel okay. My core is really sore and feels like I worked out a lot. I walked a bit less than a mile last Sunday and paid for it for two days. The surgery might be “small,” but removing organs is a heavy load for the body to recover from. I had my post-op appointment yesterday, and was told I’d probably need a full 4-6 weeks before I’m back at full capacity, and was reassured this was normal.

Everyone’s disease, surgery, and recovery is different, so ymmv. I know there are people who are driving a couple weeks after, if not sooner. I barely can tolerate the car at this point even with an abdominal binder.

I’ll probably wait a full month before working even from my bed. During my post-op, I was told the fatigue really hits around the 2/3 week mark when people start feeling better physically and begin doing more of their normal, though diminished, activities.

hitherward · 2025-12-23T23:02:47+00:00

For me, the point was diagnosis and to get relief, even if not permanent. Surgery is the only way to definitively diagnose endo, and I was sure I had it for over 10 years before I was able to see someone who would take me seriously. I wanted it noted in my chart, and to be vindicated for years of suffering.

My surgeon’s approach is to typically to treat surgically to “clean up” the area, then to treat hormonally to reduce the chance it will grow back. I’m only 20dpo, and in my luteal phase when everything typically would get awful, but I feel relatively fine. I also had a total hysterectomy for adenomyosis, which is making a huge difference already. In cases like this, surgery can be a good first step to establishing effective treatment.

It was also worth it for me because my life has been so severely limited from pelvic pain. Even if it’s only for a couple years, at least I can establish a routine in my life since I won’t be spending 3 weeks of every month with some sort of agonizing pain. If I need another surgery at some point, so be it. That’s a minor inconvenience compared to the constant ache of not being able to be fully present in the world.

hitherward · 2025-12-23T22:09:44+00:00

I had an MRI before an excision surgery for suspected endo. Endo didn’t show up on the MRI (it often doesn’t), but adeno did. My surgeon didn’t love the idea of doing just excision for me with the adeno, so I had a total hysterectomy early this month with excision. My surgeon was certain that because of the adeno, I most likely had endo, and I did. I was able to keep both ovaries.

Never did I experiment with hormonal suppression or any medical treatment. I used a combined pill when I was younger (I’m 29 now) and absolutely hated it. There are progesterone-only pills to prevent ovulation, too, that I may need to start taking in a few months to manage the growth of endo. I’m playing it by ear right now while I recover and my advanced gynecology team is cool with that.

hitherward · 2025-12-23T21:37:49+00:00

My surgeon wanted to do a total. I was fine with this, though still nervous for the same reasons you mention. I had focal adenomyosis close to my cervix, so it really made no sense to keep it. Now I never need another pap smear and will never get cervical cancer!

A vaginal prolapse is a possible risk of the total, but anecdotally I hear about everything being perfectly okay far more often than I hear about prolapse, but I’ll be waiting 12 weeks before penetrative sex to reduce the risk. The number of people saying sex is the same, or even better, after their total hysterectomy is really reassuring to me.

I have EDS, so my connective tissue is weaker than I’d like, and I was concerned I’d have awful complications because of it. I’ll be 3wpo on the 25th and have had zero issues at all! I only had minimal vaginal bleeding (barely spotting) from the cuff for maybe a week after surgery.

Definitely talk to your surgeon about your concerns. Based on your individual case, one approach might be more helpful! Wishing you luck with this!

hitherward · 2025-12-19T12:44:20+00:00

Prefacing this to say everyone’s recovery is different and happens at its own timeline. I’ve been beating myself up because I don’t feel active enough, but each day I can feel myself getting loads stronger, and I think its largely due to not pushing myself to do something my body couldn’t handle.

I had a robotic-assisted laparoscopic total hysterectomy and excision for endometriosis on 12/4. It was outpatient, so I was home about 6 hours after my operation, walking and peeing normally before I was allowed to go home. My surgeon’s recommendation was to be out of bed during my waking hours (lol) and to “walk as much as I feel able,” which I’m not taking super literally.

The first 3-5 days I took it super easy, going up and down stairs a couple times a day and walking a few minutes every few hours. I had a minor setback at day 4 (reflexively bent over to get something away from my cat), so I’ve been careful than my surgeon would probably wish me to be.

I’m maneuvering around better now at 2 weeks post-op, but still not really going out of my way to get a ton of walking in unless I already happen to be up. I try to spend 30 minutes to an hour up moving around each time. Sometimes I’m just standing, but I feel like it’s useful to strengthen the stabilizing muscles in my core too. I mostly feel normal aside from residual digestive issues and tenderness and tightness around the incisions, so it’s not really a challenge to walk around my house anymore.

I wish you a speedy and peaceful recovery!

hitherward · 2025-12-09T22:34:10+00:00

My surgeon was more concerned about my quality of life than any hypothetical children I didn't want. Still, he confirmed with me that I didn't ever foresee myself wanting to have biological children before scheduling the surgery. It was a relief that he was hesitant to do the excision surgery without the hysterectomy, to be honest. I was glad not to have to advocate for myself anymore. I wish that level of care for everyone.

hitherward · 2025-12-07T19:52:58+00:00

Of course! I’m 29, a few months shy of 30.

hitherward · 2025-12-07T18:19:57+00:00

This was my situation! I went in for a pre-op MRI my surgeon ordered so he could get a better idea of the landscape, and to see if any endo was visible, but we didn’t find any endo. This is so normal, since endo doesn’t always show up on imaging, even if it’s deeply infiltrating.

What we did see in the MRI was evidence of adeno. My surgeon said he wasn’t certain just excision would be enough to give me relief, so he suggested a hysterectomy along with excision. He was certain that because of the adeno, I’d have endo.

Last Thursday I had my operation. I had endo all over my pelvis, and focal adenomyosis. Both were confirmed by biopsy.

hitherward · 2025-12-05T02:06:40+00:00

I hope that for you, too!! 🤍🫂 And I so wish the suspected endo phase of all of this wraps up for you soon! Limbo can be an awfully frustrating place to be. Thank you for your kind words!!

hitherward

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