Turns out this is a PSA!

Strange turn of events over here! I just passed my 1 year anniversary of having a hysterectomy and I've gotta say, things are rough. I started getting insane headaches and histamine issues, and this awful puffy swelling in my sinuses with dark bags under my eyes. I have nausea and constipation, and I feel poisoned every day.

So, I got a huge lab panel done and it turns out I have iron overload (iron levels almost 300) and I test positive for the gene for hemochromatosis. Turns out my heavy periods were actually helping the iron overload, because the main treatment is bloodletting. Now that I don't bleed monthly like I was (and I was bleeding a TON), the hemochromatosis is getting severe and overloading my liver.

lThis is such a niche thing, but I'm wondering if anyone else can relate. Since my liver is doing poorly with the overload of iron, it's also causing elevated SHBG and hormone issues, so it feels like I'm in menopause even though I'm not because the SHBG is stealing all of my bioavailable hormones.

Just feels like a never ending saga of problems. Thank you for listening! I hope this helps someone else who is feeling better in a few ways post hysterectomy, but worse in a lot of others.

as soon as my appointment with the gyn surgeon started I advocated I want hysterectomy. She told me my pain intensity and symptoms were more than fibroids and ordered mri. I told her regardless of my symptoms I know something is off and want to get rid of uterus. just found out I was right I have ad!
ladies always trust your intuition. Im scheduled for hysterectomy for 11.

It's been one year since I (42f) yeeted that thing out of existence and I only have one regret:

I wish I'd done it sooner. :/

I always knew I didn't want kids, and my periods were horrible and somehow getting worse as I got older. I officially started looking into the procedure 10 years ago, and along the way I got gaslit, sidelined, scared, doubtful, basically all the things that could delay or prevent it from happening, did.

Debilitating periods ruined half my life. My cycle averaged 28 days, where 11-14 days I'd be bleeding, and 1-3 days of that I was bleeding so much I'd sometimes black out. The cramps were crippling some days. Even with iron supplements my highest iron count was 8 in a good day (I think 30 is the min recommended for women). Events had to be skipped. No clothing or furniture was safe no matter what I did to prevent leaks. Couldn't focus on anything, it consumed me. I was miserable and severely depressed whenever I was bleeding, I just wanted the suffering to end.

It finally did. :)

I'm now sitting here wearing light tan pants I never would've worn before, thinking about how peaceful my days have gotten without having those horrifying days of blood and pain and stains and blackouts. No having to decline plans or grit my teeth through them because I'm in agony. I am free.

So to those on the fence, scared shitless about their surgery (I sure was too), know that it's worth it.

You're worth it. You got this.

FINALLLYYYYY. Had my 6 week post op appointment today and got the all clear to resume normal activities. (Ease in lol) first thing I did after my toddler was asleep was get that bathtub ready. Honestly considered doing a cannonball in, the most exciting thing in a while 😂😭(26f, mom of an almost 2 year old and uterus free for 6 weeks, after nearly 2 years straight of bleeding daily postpartum and nearing a prolapse. I earned this bath)

With the hysterectomy done, I’m planning on seeing a pelvic floor physical therapist as soon as I get a referral. I’m super curious how that went for people. I hear they can be miracle workers for people like me (with IBS symptoms and IC). What was your experience like?

Healing is going well and I believe I was blessed by the surgery gods because the pain has been minimal :) I also had an excellent surgeon! No bruising or anything! I'm 24 F.

I am one year and a few months out form surgery. I have been having weird pain that basically felt like how I did before my hysterectomy. My dr did an ultrasound and I have a 7cm endmeteioma on one ovary and a 6cm regular cysts on the other. I am having surgery to remove the cysts November 20th. Anyone ever gone through this after hysterectomy? I had no previous history of ovarian cysts.

My Hysterectomy Cake Day! Kind of exciting.

I wanted to thank everyone for making this sub so great, especially with the mayhem from the other day. So many of you helped me over the last couple of years, and I hope I’ve helped others in turn.

With that, here’s my story because I don’t think I’ve ever even made a general post:

I had fibroids my whole adult life. Never wanted kids. Also never wanted elective surgery. Twelve years ago my fibroids grew a lot, to about 26 week pregnancy size. And I’m tiny. Things were getting in the way. Just wanted to wait for menopause to have surgery though.

I had none of the other classic fibroids symptoms, but I suffered in many many other ways which also really amped up in perimenopause. So that was 10 years of intense hell during which I got the default response from providers: maybe you need an SSRI/ literal shrugs. I’d suddenly had a ton of MSK issues since the pandemic, which coincided with hitting menopause and losing a bunch of family members and friends all in the same year. I lucked out getting on MHT (menopause hormone therapy) right when it hit in 2023. That helped a lot. I was in PT all the time and was able to see a physical therapist who put up with my undiagnosed everything and helped me get extra strong before surgery.

I had a family history of ovarian cancer so I knew I wanted to pursue oophorectomy along with salpingectomy. Again lucked out with genetic counseling, because of a family history of breast cancer and Lynch Syndrome markers, and they approved me for a BSO.

Surgery was laparoscopic, they put all my 1300+ grams of lady guts in a bag and used the morcellator and pulled the bag out through my navel, which they enlarged. My dead mother and grandmother left signs they were with me, both before and after, that was wild! I didn’t have complications, except I couldn’t pee but they wanted to discharge me (USA!) so I went home with a catheter and bag. The lab report and my surgeon said everything was unremarkable. Which is good, but I was hoping for more dramatic explanation and proof of all my suffering; no dice there.

Over the months I grieved, which was unexpected and funny. I kept my daily goals simple and selfish, but felt mentally and physically lighter. I waited for something bad to happen but so far it has not, in this arena at least. I learned that fiber supplements help with balancing out, not just helping you go. I still have exhaustion that comes on at random times, working on sorting it out.

It was the hardest thing I’ve ever chosen to do for myself, but I’m happy and don’t have regrets about the timing or anything else. I conquered a lot of fear to do it. I had so much help, but it was ultimately just me, exposed, alone and open.

Still haven’t had any vegan cake. Goal for this coming year.

Had my total hysterectomy and surprise appendectomy on Monday. Was in the hospital for about 24 hrs total due to not being able to keep food down, think it was due to the anesthesia. They gave me 2 anti nausea drugs in my IV which I think has helped in the days after. They had to remove the patch they put behind my ear.

Was able to slowly go upstairs to my bed after we got home and have not gone back downstairs yet.

The gas pain has been hard, feel like I need to breathe shallowly due to that. Pooping has been difficult but I was able to go some on day 3po. I don't like Miralax so have been doing Senokot gummies and Mag Citrate. I might need to get a suppository or stool softener too.

Also I have hardly any appetite, wondering when that will return.

Heating pad and the pillow they sent me home with have been helping with things. Also the grabber thing since I keep knocking things off my nightstand.

Hoping to maybe go downstairs and be able to see my dogs tomorrow. They are big dogs that get excited and jump on me normally.

Been alternating the Tylenol and Ibuprofen every 4 hours. That was the schedule they told me to do, even though the bottles say 6 hrs.

I finally had my surgery yesterday! It still feels surreal!
My team was incredible. And I was in the hospital for less than 5 hrs total! The first 1.5hrs was check in and pre op.

Once I could pee they sent me home. Thank god because I could not stay awake. For some reason I was so tired waking up. I have essentially been sleep non stop since 2-3hrs at a time. Only walking up since I need to pee. And trying to do my 5-10 min of walking before crashing again.

It just feels like period cramps to me. Internal soreness and some bloating. My tailbone and knees hurt like hell.

I've been able to eat fine.
I had my first sneeze(not recommended).
I passed a small blood clot at 2:30 am which kinda freaked me out. One of the nurses said to call and let somebody know if I did, but they don't have 24 lines. So eventually I got ahold of an overnight on call from my gyno/surgeons office. She told me it sounds like I'm fine as long as there's no fever, excessive bleeding, or signs of infection, but if I have another she wants me to come in.

Had my hysterectomy performed on Tuesday (Oct 13). Before being wheeled into the OR the nurse applied a scopolamine patch behind my ear.

The patch has caused my eyes to dilate a ton, and now I can’t see anything close up! It’s literally so hard to proofread anything I’m typing.

(Still so so so so happy I was able to get a hysterectomy at 31 with zero children!!!)

Also- yes I removed the patch today when I realized I’m literally going blind

I had my 2 week follow up today and I was told that healing is going perfectly, so YAY! I did think it was funny though because he told me no penetration for the next 10 weeks and then immediately put the speculum thing in me for the pelvic exam (which I know is totally different but still funny). I have been cleared to go back to life as normal and can finally take a bath 😁 Now for tomorrows appointment to get this dang uterine stent removed.

I just wanted to share my experience and see if anyone has gone through something similar.

I had a laparoscopic hysterectomy 6 weeks ago (kept my ovaries), and the first two weeks of recovery went pretty well.

Around week 2, I started having some light bleeding for the first time.
About two weeks ago, I had an ultrasound and they found a hematoma above my vaginal cuff, along with partial vaginal cuff dehiscence.

Apparently, the opening isn’t big enough to need another surgery, so my doctor gave me some medication to stop the bleeding and help things heal. They also extended my medical leave.

Has anyone dealt with something similar? How long did it take to heal?

I am on week 6 of my post op recovery for my hysterectomy for endometriosis and PMOS (pcos). I had my uterus, left ovary, tubes, and cervix removed and they also found my colon adhered to my pelvic wall and removed that as well

Every day that I feel like I’m feeling better, the next day I feel worse. My doctor just prescribed me a muscle relaxer because the vaginal cuff constantly feels like one big muscle cramp. I also am still have spotting, but no clots. I have my check up next week but I’m worried I’m not healing right?

I had a small cold during week 3 and one of my sneezes felt like it really tested those sutures and felt like I was kicked in the crotch afterwards. I didn’t feel a pop but it was like when you squeeze a water balloon lol

I’m just wondering if anyone else had any issues with their recovery and what it felt like. Specifically the vaginal cuff.

I’m a screamer. I love haunted houses. But I’m a little worried I’ll be stuck walking too long or, lord forbid, someone near me freaks out and knocks me down. What do you think?

I'm 22M (trans) and am planning on asking about an elective or partially medical hysterectomy.

I have horrible periods and heavy bleeding, bad cramping, and large clots the size of quarters or clementines when I do bleed- although a CT and transvaginal ultrasound have confirmed nothing is going on in there to cause it.

I've been on birth control for 2-3 years to curb my dysphoria and stop my cycles altogether; similar to a hormone blocker- I skip placebos and it has entirely stopped all menstrual activity- but this comes with its own challenges. I have gained weight and find it hard to lose it, my appetite has grown, and I feel off.

I want to ask for one for the purpose of stopping my cycle, not having to take birth control anymore to better my health and ability to lose weight, and to avoid pregnancy and dysphoria both. I want to be fit and healthy, but I feel like my birth control is limiting that- and without birth control, I'd have horrible cycles again every month with pain and even worse dysphoria.

Does anyone have similar experiences and went through with it? Even if not, I'd love to hear about elective non-cancerous hysterectomies or hysterectomies without medical reasons (as cancer and endo can raise bleeding and risks, and I don't have that so I won't experience it likely).

I am also having more done in one go. The uterus is being removed for severe adenomyosis. Tubes and cervix for cancer prevention as it is in my family. I also have uterine and bladder prolapse. They are going to repair my bladder and urethra for urinary incontinence post baby (she is now 2). I was going to have surgery 2.5 years ago when I found out in the operating room that I was pregnant. I had been bleeding for 2 months so it was a shock to say the least. This has been a long time coming, I can't wait to be done with my years of misery, but I am so curious if anyone has had prolapse surgery at the same time, OR had issues with prolapse as a result of a vaginal removal. I am seeing so many women lament having pelvic floor issues post op, and my pelvic floor issues are part of the reason for my surgery.

Any experiences welcome. For context I am getting the surgery done by a woman who had the same procedure herself and I trust her fully, outside of Boston, USA.

Today was again better but also worse in ways. I don't habe a ton to report as the day was uneventful overall. Does the up/down rollercoaster of symptoms end soon?

The diarrhea from Day 4 (self induced by my own stupid decision to drink way too much pear juice) subsided but I am very raw still which makes using the bathroom uncomfortable. Also, I have a dull ache in my lower left pelvic area and it hit me: I would have been on my period this week and I think my remaining ovaries are pissed off that they've been left behind. I did spot a little today, very faintly, and that scared the hell out of me because I hadn't had any bleeding in days but it went away and I had no pain, so I assume all is well.

On the bright side, the pain was still nonexistent other than that dull ache. My incisions are getting a little itchy but look like they're already half healed! I would love for the swelling in my abdomen to go down but I know that takes a few weeks.

I have my first check up on Friday morning so looking forward to seeing how that goes.

Questions I do have for those that have been here (amd I also plan on asking about at my check up):

1. When can I safely sleep on my side?

2. Did icing your abdomen help? I have been using a heated pad for my back but wondering if icing the front would help with healing?

3. How long did you wait to ride in a car? How did it go? I am not ready to drive but would love to get out and see some sunshine. Maybe get food or something. I guess I will find out Friday but was something I thought of today.

I, 34 F, have a scheduled elective hysterectomy coming up in a month. I have been dealing with persistent pre-cancerous cells on my cervix for the last 13 years, plus I've had 5 children, and I have extreme pain the first couple days of my period so my doctor and I both agreed a hysterectomy made sense from multiple angles. I have regular periods every month (regular as in always every 26-28 days like clockwork) and never have bleeding in between cycles. My doctor scheduled a transvaginal ultrasound to be done before surgery so he can get a good look at things and get an estimate on the size of my uterus and position to determine the best surgical approach. He messaged me after to say everything looked reassuring and we will proceed with the surgery. I didn't think much of it until about 2 weeks later I decided to read the ultrasound report. It mentions my endometrial lining being abnormally thick and heterogeneous with a possibility of endometrial hyperplasia. My doctor didn't tell me any of this so I am not sure what to think. I know regardless of what the ultrasound says he was already planning to send my uterus to pathology to rule out anything serious, but I'm wondering what I might expect from this.

Warning: talk of #2

So I wanted to come on here and ask if anyone experienced diarrhea either a few days after discharge and for how long because I’ve had diarrhea off and on for a few days. Some normal and others watery. Told my surgeon about it that did the surgery and she wants me to get lab work done + stool sample tomorrow. Also have a little bit of chills off and on but I’m anemic and have had this for 2 days.

Any advice? I’m thinking about going to my primary tomorrow for all of this instead of Quest Diagnostics because Quest has a habit of long waiting periods even though there’s an appointment

I have an appointment scheduled to get an exam but I wanted to know if anyone has experience with this or has advice. Like I said I’m about 6 months post op, my follow up with my surgeon was fine, everything looked good, I was cleared for sex months ago, but I’m having extreme pain in the area where my cuff is every time I attempt to have sex. We’ve tried twice, it doesn’t matter how careful and slow my boyfriend is, I have to tell him to stop and I end up in the kind of pain that makes me feel sick and in pain for days afterwards. I actually passed out from it one time and had to spend the next few days bedridden. Obviously I will not be attempting again any time soon. I spoke to my GP and she said this is clearly not normal and I’m waiting to get in to see a specialist. I also have EDS and I’m worried that the cuff did not heal properly (I’ve had a lot of surgeries due to my joint issues and I’ve had difficulty with healing and scarring in the past) and this will be a permanent issue or I’ll need another surgery to correct something that’s wrong. Has anyone else had this happen or have any words of wisdom (other than the obvious of staying abstinent)?

I had a full hysterectomy, removal of my fallopian tubes and cervix, a rectocele repair and a cystocele repair and then a mesh sling for bladder placed on October first. Excessive air in my abdomen and severe pain lead to an emergency surgery on October 4th. But they found now perforation. I spent a total of 6 days in the hospital. And I kept failing my voiding tests. I've been out of the hospital a week and failed again. I go again next week and I fear the same thing will happen. A year ago they had me try to self cath cuz I wasn't able to empty my bladder fully. I succeeded in the Dr office but failed every single time at home. And I injured myself. I just cant do it and all of this has been very traumatizing and im not in a god head space. I cant self cath. Im still on foley

Has anyone else struggled to get off the catheter following this major of surgery. Is there any tips?

I had my hysterectomy nearly 11 months ago, but did keep my ovaries. I've always had issues with the heat as a redhead, but my reactions have never been this severe.

If it's 85+ degrees here and I go outside, I start sweating and feel extremely nauseous within a couple minutes.

It's pretty hot and humid for at least 7 months of the year here, so I've essentially tried only going out before the sun comes up or after it goes down since May.

I thought I'd wait it out and assumed it was just normal after surgery, but it still seems really excessive.

A friend finally talked me into getting my labs done, but nothing showed as abnormal.

Has anyone else experienced something like this? Did anyone else get diagnosed with something?

Both my doctor and I are at a bit of a loss on what to do next. I'm 33, so it seems pretty early for menopause if that's what's going on.

Hi everyone, it’s probably the 10000th question should I or should I not, but idk who to ask. I’d like to keep this private from my environment.

So actually I (37) don’t really need a hysterectomy, I have several fibroids, one of them is about 6 cm. They don’t really bother me and I was taking the birth control to control the fibroids also. But I can’t take them anymore bcs my blood pressure goes crazy every day. I’m also child-free and wanted to get sterilised anyway.

So today my gyn told me to go off the birth control and warned me that the fibroids may or may not grow without the pills. I asked him what he would advise and he said: “the fibroids are in not so good spot, to delete them will be inefficient and every surgeon will advise to delete the whole thing. As you don’t want kids, I’d do that”. I’m a little bit dumb about my body, so I asked if it will affect my body regarding hormones and so on and he said no. The ovaries would stay, so would the cervix. They also won’t cut my belly lol. I said I’ll think about it.

The next dumb thing I did was to ask ChatGPT and Gemini what the consequences could be, and ChatGPT provided me with some moderate feedback and links to the medical sites and research. Gemini didn’t, it said that I’ll probably get a weak bladder, my vagina will get dry, I won’t orgasm anymore (wtf) and I’ll get Pelvic organ prolapse (I better not translated that into my native language 😱). I know I should not trust AI and especially bcs it didn’t provide any sources but I have anxiety disorder and now I’m kinda scared.

I’m sure that I don’t want kids and as I said, I’d have my tubes cut anyway once I saved some money. The hysterectomy however would be free for me bcs my insurance will pay for it 🤔 I’ll certainly have to talk to the doctor and surgeon but first I want to see some opinions of the others.

Thanks for reading this text and sorry if I used some words wrong, English is not my second language 😁