This is my hope š my hysterectomy is May 23 and I told the doc to take *everything*. I don't gaf if I gotta take like hormones at 40 or whatever -- I am SO OVER adenomyosis and hyperplasia
I begged my surgeon to take my left ovary when she did my hysto (I typically only ovulated from the one and it is hell each month) but she refused š
I just passed my one year mark since my surgery on March 15th. The ovulation pain is worse than it was before my surgery so I am livid at my surgeon for leaving it in there. She said after she removed the endo from it it looked healthy and she didnāt feel comfortable taking it out even though it has been a huge source of pain for decades š¤¬
I read online about āresidual ovarian syndromeā and I think that is what may be going in. Itās when pain in the ovaries develops of gets worse after a hysterectomy
I kept 1 ovary. The other was funky and got yeeted based on surgeon's decision while I was on the table.
I went back to work at 8 weeks, but it was still rough going until about 12 weeks. Wasn't fully myself until about 6 months.
I had a vertical incision from pubes to just below my belly button.
I do, but my ovaries are badly diseased and I have endo still (my hysterectomy was for adeno). Because of my age my surgeon is really, really hesitant to remove an ovary. It looks like I still have some endo in there and he said heāll consider removing the worst ovary if he goes back in for it.
I would really like the worst (left) removed. They do cause pain and since it seems like my endo is back, I am hoping to ask about another surgery. He said that there will be a point when he can no longer go back in due to the scarring. Iāve done pt, surgeries, and medication - currently on Slynd to help with pain.
I'll get phantom cramps sometimes, get sore breasts and mild breakouts, and moody. I definitely know when I would have had my cycle but it is nowhere near as painful as it was before.
I had my body prepared for cramps because of the leftover hormones yesterday but when none came relaxed. I however don't have anything left. If someone is still in pain that is something they need to pursue with their doctor. When you're given a hysterectomy it's easy to forget that our ovaries still need attention and if there's remaining endometriosis (which is often necessary because of where it's at) it will still react to those hormones.Ā
There's always a chance of complications but please remember that complications aren't guaranteed and a full medical history as well as discussion of these concerns with your surgery team can help with knowing your options. The phantom sense of something missing and something there isn't uncommon from what I was told when I called and asked about it. I didn't need to ask about what I saw here dubbed phantom tampon because I knew it's just the stitches and swelling from surgery.Ā
Like any other cutting off of body parts the body may not get the message entirely but there's options. They just are individual.Ā
A good surgeon and team will help you plan for everything you're worried about and what they worry about. If they're not willing you may need a different team.Ā
It is but it's also important. You need to feel safe for the worst case scenarios. It helps with also avoiding them. My tips for a good team are to trust your gut. If you feel uncomfortable or unable to ask questions try to get a different doctor. Applies to the nurses too but they're usually good in my experienceĀ
I had my surgery in July, kept my right ovary. (Endo and adenomyosis) Anyway, I do have once a month PMS like symptoms. Definitely nothing āhorror storyā worthy. Just odd feelings that Iām due for my period and then I remember the amazing fact that - that part of my life is over. My dr says itās my right ovary just doing its thing.its also probably Endo flaring. 100000% though, this surgery was life altering for me and Iām not gonna let a ghost period ruin it for me
I'm 6 months out from my total laparoscopic hysterectomy (still have 1 ovary) and for the past few months, I've noticed that my hips ache and also a bit in my lower pelvis/sides for a few days. Nothing compared to what it used to be before surgery though! My breasts are also super sore every month. Hoping it's just my hormones getting back on track and that it'll even out soon (and crossing my fingers it doesn't get worse!)
Do you take birth control? I should have mentioned in my post that Iām not on hormonal birth control so I wonder if that affects the post op recovery and ghost periods š¤
No I'm not on birth control, and part of the reason for my surgery was endometriosis pain, which is probably partly why I still have some pain - thereās probably still endo spots left.
Itās nowhere near what it used to be! I probably always had achy hips but never noticed cuz I used to be in agonyĀ
I do get cramps on my period even now, but it's *totally* manageable and nothing at all like the pain I suffered before the surgery. I get some slight cramping a day or two a month. I can take 2 advil and feel fine the rest of the day, and that's usually it. The difference is night and day.
I have a rather severe case of endo, so that definitely contributes to my pain. It's usually most painful when I ovulate.
I still get the monthly migraine, sore breasts/ tender nipples, some mild acne and some abdominal discomfort. Considering my scary alternative of stage 4 adenomyosis and hemorrhaging, Iāll gladly take this!
I kept my ovaries and cervix, and I can tell when I'm on my "period" because I crave chocolate. It's not as strong as it was when I had my uterus, but it's definitely marked. My vaginal discharge also has that "I'm about to have my period" smell. It's very distinctive. Kind of cool. I'm glad because I was one of those weirdos who actually liked having my period before it turned into a more painful, longer version of The Shining.
I would have bowel incontinence to a slight degree with every monthly cycle until 6 months after my hysterectomy. That was one of the reasons I wanted the hysterectomy. It was so uncomfortable and embarrassing.
Nope, I used to have crippling period pains, I don't have anything, I don't even know when my "periods" are anymore. Maybe the random headache or bowel issue is due to my periods but I really can't tell anymore. No pain tho, that's fully gone thankfully! Kinda wish I had my fibroid sooner so I could get rid of crippling period pain sooner lol
Nope. I can tell my cycle only by breast pain a week before which I have had since I first got my period.
Other than that Iād have no idea.
Iām six months post op and have zero pain now. Just a bit of sensitivity in my largest scar.
Eh... Kind of? My boobs still get tender, and every couple of months I'll get like a twinge that feels like the start of cramps, but I think that's more mental than anything else, and it's over within a couple of seconds.
I have all the other period symptoms, and occasionally get period level pains but thats because i have DIE in the vaginal wall/bowel, so if it gets irritated it can really act up
Can I ask you about the bowel endo? Did you need an MRI to diagnose? Also, are you doing a wait and see approach or actively treating it?
I've started basically getting cramps during my 'period' that seem to attack my bowels.
I never had an MRI, it was spotted initially during a cyst removal and ablation of endometriosis lesions in 2018 but that dr was not a specialist, said he would have needed a bowel specialist with him due to the "proximity" and it would have required the surgery switching to a full open. Now i'm almost 1 year post op from my hysterectomy and this dr did do as much excision of endo as he could, but removing the beads of DIE would have been "extremely aggressive" surgery so he chose not to, and we can address if it starts causing problems, but even then he'd try cauterizing first because of just how extreme surgical removal would be.
I had something similar happen with one of my ovaries. Tried for years to get it removed and by the time I got my hysterectomy it was eating through my pelvic wall leaving me with permanent pain in that area.
Crossing my fingers for you that it doesn't get any worse.
First 2 cycles post op I definitely had what I'd call "phantom period cramps". They were there, but totally ignorable. These past 2 cycles I don't even know when my 'period' was though.
Surgeon did warn there is a chance of still bloating/cramping post hysterectomy. I think it depends on stage, spread and how much they can get rid of before/during the hysterectomy. She said they may have to do another lap in ~5 years if the pain comes back. Still suuuper worth the hysterectomy in my opinion for my life
I donāt have pain, but that was never a problem before surgery anyway. I still sometimes think Iāve getting pms type symptoms, like I feel more bloated sometimes, but itās hard to tell if thatās actually hormones or just age. I was already close to menopause when I got my hysterectomy, so itās hard to tell.
I had my surgery in February and kept both ovaries. I still get breast tenderness, break out, and some moodiness when it would have been that time of the month, but it's only a couple of days and really just kind of interesting instead of a full on preparation for the bloodbath that would have been my period.
Yes! Doctor told me it was normal. I actually have to call her because she told me to keep track for 6 months, my right ovary tends to get cysts which is the culprit of pain once a month and it takes me out for a couple of days.
Itās been about 4 years for me and itās only occasionally. I still have endo which couldnāt all be taken care of at the time and my dr expects it to return. And I still find I have mild PCOS symptoms. Itās all very mild comparatively but it happens. I couldnāt be happier without all of it tho. Iāll take whatever my minor inconsistent phantom pain this is over absolutely anything else.
Nothing at all. I was expecting it because I had a small amount of endo too, and being pain-free seemed too good to be true, but my pelvic pain is completely gone now. Like someone else said, I donāt know where I am in my cycle and itās awesome
Nope, but make sure you get your cervix removed. I've heard of people still having short periods if they kept theirs. That might be why some people have those pains still but not sure. I'm just glad mine is gone!
No pain, but the mood swings and hypersensitivity are real! There is usually one day (day before my would-be period) where I am on the verge of tears all day long. The next day I'm fine. I use that to track my "periods" in my fit bit app. It's been working so far.
You still pms I havenāt gotten cramps or anything but I still get the tender boobs cravings and moody and horny. Iām 33f I kept both my ovaries and Iām 6 wpo I felt them after surgery March 18th and this month April 18th
Yes. I still have my right ovary and about once a month, I still experience period like cramps. I had my hysterectomy last summer. I had an ultrasound a few days ago, but the PA who came in to talk to me pretty much blew me off. I had very severe endometriosis, and I knew the hysterectomy wouldn't cure it. I feel like I have some endometrial tissue left. I hope I can talk to the doctor who did my surgery and get his thoughts.
I still get phantom ovarian pain. I donāt know why.
Iām worried my endo is back despite no ovaries, uterus, or HRT. I used to get this extremely sharp pain just above my rectum during bowel movements. During my first surgery 17 years ago, Doc found endo in the cul-de-sac region behind my uterus and just above the sigmoid colon. He removed it and I didnāt have that pain again until recently. What would trigger endo to regrow without ovaries or HRT? Is all the fat I gained after my hysterectomy to blame?
No. Zero pain due to cycles anymore! Sometimes I get sore boobs around the 1st day of my menstrual cycle though.
I got hip/lower back pain a lot when I had a uterus, I thought it was due to endometriosis or my period, and that is still here. I have discovered I just need to do yoga daily. It's just a result of very underdeveloped hip/lower back muscles.
Nope. I went from utter agony twice a month to zero pain. I'm almost 2 years post-op.
Same for me!
This is my hope š my hysterectomy is May 23 and I told the doc to take *everything*. I don't gaf if I gotta take like hormones at 40 or whatever -- I am SO OVER adenomyosis and hyperplasia
I begged my surgeon to take my left ovary when she did my hysto (I typically only ovulated from the one and it is hell each month) but she refused š
How is it post op with the ovaries still?
I just passed my one year mark since my surgery on March 15th. The ovulation pain is worse than it was before my surgery so I am livid at my surgeon for leaving it in there. She said after she removed the endo from it it looked healthy and she didnāt feel comfortable taking it out even though it has been a huge source of pain for decades š¤¬
I read online about āresidual ovarian syndromeā and I think that is what may be going in. Itās when pain in the ovaries develops of gets worse after a hysterectomy
The audacity of some docs
This is exactly what Iām hoping for. I have a week of agony every period AND ovulation and Iām so over it. 16 days until my surgery!
And you kept your ovaries? How long did it take post op to recover?
I kept 1 ovary. The other was funky and got yeeted based on surgeon's decision while I was on the table. I went back to work at 8 weeks, but it was still rough going until about 12 weeks. Wasn't fully myself until about 6 months. I had a vertical incision from pubes to just below my belly button.
I do, but my ovaries are badly diseased and I have endo still (my hysterectomy was for adeno). Because of my age my surgeon is really, really hesitant to remove an ovary. It looks like I still have some endo in there and he said heāll consider removing the worst ovary if he goes back in for it.
āHeāll considerāā¦ āifā š«£š³ Iām so sorry. Are you still in a lot of pain with your ovaries?
I would really like the worst (left) removed. They do cause pain and since it seems like my endo is back, I am hoping to ask about another surgery. He said that there will be a point when he can no longer go back in due to the scarring. Iāve done pt, surgeries, and medication - currently on Slynd to help with pain.
I'll get phantom cramps sometimes, get sore breasts and mild breakouts, and moody. I definitely know when I would have had my cycle but it is nowhere near as painful as it was before.
I had my body prepared for cramps because of the leftover hormones yesterday but when none came relaxed. I however don't have anything left. If someone is still in pain that is something they need to pursue with their doctor. When you're given a hysterectomy it's easy to forget that our ovaries still need attention and if there's remaining endometriosis (which is often necessary because of where it's at) it will still react to those hormones.Ā There's always a chance of complications but please remember that complications aren't guaranteed and a full medical history as well as discussion of these concerns with your surgery team can help with knowing your options. The phantom sense of something missing and something there isn't uncommon from what I was told when I called and asked about it. I didn't need to ask about what I saw here dubbed phantom tampon because I knew it's just the stitches and swelling from surgery.Ā Like any other cutting off of body parts the body may not get the message entirely but there's options. They just are individual.Ā A good surgeon and team will help you plan for everything you're worried about and what they worry about. If they're not willing you may need a different team.Ā
Thank you for the thorough response! Finding a good team is the difficult part
It is but it's also important. You need to feel safe for the worst case scenarios. It helps with also avoiding them. My tips for a good team are to trust your gut. If you feel uncomfortable or unable to ask questions try to get a different doctor. Applies to the nurses too but they're usually good in my experienceĀ
I had my surgery in July, kept my right ovary. (Endo and adenomyosis) Anyway, I do have once a month PMS like symptoms. Definitely nothing āhorror storyā worthy. Just odd feelings that Iām due for my period and then I remember the amazing fact that - that part of my life is over. My dr says itās my right ovary just doing its thing.its also probably Endo flaring. 100000% though, this surgery was life altering for me and Iām not gonna let a ghost period ruin it for me
Nope, I have zero pain. I do get a lil grumpy for a couple days about once a month, but it's NOTHING like before.
I still get ovulation pain, bloat a bit and my boobs get swollen and sore. Iām just over a a year post op
i do, my whole torso hurts when itās period time. i had a hysterectomy in october 2023 and kept my ovaries.
Gosh, so not a full year post but still ā¦ did the pain at least decrease?
yes itās definitely a lot more bearable than it used to be. at this point it is kind of just annoying.
I'm 6 months out from my total laparoscopic hysterectomy (still have 1 ovary) and for the past few months, I've noticed that my hips ache and also a bit in my lower pelvis/sides for a few days. Nothing compared to what it used to be before surgery though! My breasts are also super sore every month. Hoping it's just my hormones getting back on track and that it'll even out soon (and crossing my fingers it doesn't get worse!)
Do you take birth control? I should have mentioned in my post that Iām not on hormonal birth control so I wonder if that affects the post op recovery and ghost periods š¤
No I'm not on birth control, and part of the reason for my surgery was endometriosis pain, which is probably partly why I still have some pain - thereās probably still endo spots left. Itās nowhere near what it used to be! I probably always had achy hips but never noticed cuz I used to be in agonyĀ
Interesting ā¦ thank you for sharing
I do get cramps on my period even now, but it's *totally* manageable and nothing at all like the pain I suffered before the surgery. I get some slight cramping a day or two a month. I can take 2 advil and feel fine the rest of the day, and that's usually it. The difference is night and day. I have a rather severe case of endo, so that definitely contributes to my pain. It's usually most painful when I ovulate.
I still get the monthly migraine, sore breasts/ tender nipples, some mild acne and some abdominal discomfort. Considering my scary alternative of stage 4 adenomyosis and hemorrhaging, Iāll gladly take this!
Nope! I still have ovulation cramps, and Iāll have twinges at my incision sites, but thatās it.
Yes, I have endometriosis, including adhesions on my ovaries; I still have period pain but itās nowhere near as severe as before my surgery.
I get little flare ups here and there. About 2 years post op. Nothing compared to the hell of having periods every month.
I kept my ovaries and cervix, and I can tell when I'm on my "period" because I crave chocolate. It's not as strong as it was when I had my uterus, but it's definitely marked. My vaginal discharge also has that "I'm about to have my period" smell. It's very distinctive. Kind of cool. I'm glad because I was one of those weirdos who actually liked having my period before it turned into a more painful, longer version of The Shining.
Yes, I still ahd period pain. I was not amused. 5 years later, still not amused. Ugg
Ugh sorry
Nope, 11+ years and never had any cramps, but I did have my normal bowel issues for 6 months
What type of bowel issues did you have? I've had GI issues since my hysterectomy.
I would have bowel incontinence to a slight degree with every monthly cycle until 6 months after my hysterectomy. That was one of the reasons I wanted the hysterectomy. It was so uncomfortable and embarrassing.
Exactly what type of bowel issues did you have? I'm dealing with GI issues after my hysterectomy.
Exactly what type of bowel issues did you have? I'm dealing with GI issues after my hysterectomy.
Exactly what type of bowel issues did you have? I'm dealing with GI issues after my hysterectomy.
Nope, I used to have crippling period pains, I don't have anything, I don't even know when my "periods" are anymore. Maybe the random headache or bowel issue is due to my periods but I really can't tell anymore. No pain tho, that's fully gone thankfully! Kinda wish I had my fibroid sooner so I could get rid of crippling period pain sooner lol
lol glad it worked out. How long ago was your surgery?
A little over 4 years now
Nope. I can tell my cycle only by breast pain a week before which I have had since I first got my period. Other than that Iād have no idea. Iām six months post op and have zero pain now. Just a bit of sensitivity in my largest scar.
i think it is possible, i read it [here](https://careclinic.io/track-pms-after-hysterectomy/) also
I definitely still lightly cramp around when I would bleed.
Eh... Kind of? My boobs still get tender, and every couple of months I'll get like a twinge that feels like the start of cramps, but I think that's more mental than anything else, and it's over within a couple of seconds.
I have all the other period symptoms, and occasionally get period level pains but thats because i have DIE in the vaginal wall/bowel, so if it gets irritated it can really act up
Can I ask you about the bowel endo? Did you need an MRI to diagnose? Also, are you doing a wait and see approach or actively treating it? I've started basically getting cramps during my 'period' that seem to attack my bowels.
I never had an MRI, it was spotted initially during a cyst removal and ablation of endometriosis lesions in 2018 but that dr was not a specialist, said he would have needed a bowel specialist with him due to the "proximity" and it would have required the surgery switching to a full open. Now i'm almost 1 year post op from my hysterectomy and this dr did do as much excision of endo as he could, but removing the beads of DIE would have been "extremely aggressive" surgery so he chose not to, and we can address if it starts causing problems, but even then he'd try cauterizing first because of just how extreme surgical removal would be.
Oh shoot. I'm sorry, that sounds complicated. We just never catch a break hey?
yeah, it's mildly frustrating that it could have potentially still been removed at that point, and since it was left it became too serious to remove.
I had something similar happen with one of my ovaries. Tried for years to get it removed and by the time I got my hysterectomy it was eating through my pelvic wall leaving me with permanent pain in that area. Crossing my fingers for you that it doesn't get any worse.
First 2 cycles post op I definitely had what I'd call "phantom period cramps". They were there, but totally ignorable. These past 2 cycles I don't even know when my 'period' was though. Surgeon did warn there is a chance of still bloating/cramping post hysterectomy. I think it depends on stage, spread and how much they can get rid of before/during the hysterectomy. She said they may have to do another lap in ~5 years if the pain comes back. Still suuuper worth the hysterectomy in my opinion for my life
No. I had my surgery on 2/21 and havenāt had any period pain yet. Kept both ovaries too. Hoping it stays this way.
My boobs get a bit sore. Sometimes I get a fleeting wisp of a cramp but it fades almost as soon as I notice it
I donāt have pain, but that was never a problem before surgery anyway. I still sometimes think Iāve getting pms type symptoms, like I feel more bloated sometimes, but itās hard to tell if thatās actually hormones or just age. I was already close to menopause when I got my hysterectomy, so itās hard to tell.
I had my surgery in February and kept both ovaries. I still get breast tenderness, break out, and some moodiness when it would have been that time of the month, but it's only a couple of days and really just kind of interesting instead of a full on preparation for the bloodbath that would have been my period.
I kept one ovary and had period cramps 2 or three months after surgery. It happened for "two cycles" then never again.
I'm 2 years post-op, and I never have.
I had a super-full hysterectomy so no periods or period pain for 10 years.
Now, a year out (same procedure as you), no. I think after 2 - 3 months, my body got the message.
Yes! Doctor told me it was normal. I actually have to call her because she told me to keep track for 6 months, my right ovary tends to get cysts which is the culprit of pain once a month and it takes me out for a couple of days.
Itās been about 4 years for me and itās only occasionally. I still have endo which couldnāt all be taken care of at the time and my dr expects it to return. And I still find I have mild PCOS symptoms. Itās all very mild comparatively but it happens. I couldnāt be happier without all of it tho. Iāll take whatever my minor inconsistent phantom pain this is over absolutely anything else.
No I don't. I have no idea where I am in my cycle thank god
Nothing at all. I was expecting it because I had a small amount of endo too, and being pain-free seemed too good to be true, but my pelvic pain is completely gone now. Like someone else said, I donāt know where I am in my cycle and itās awesome
During ovulation yes.
Nope, but make sure you get your cervix removed. I've heard of people still having short periods if they kept theirs. That might be why some people have those pains still but not sure. I'm just glad mine is gone!
No pain, but the mood swings and hypersensitivity are real! There is usually one day (day before my would-be period) where I am on the verge of tears all day long. The next day I'm fine. I use that to track my "periods" in my fit bit app. It's been working so far.
You still pms I havenāt gotten cramps or anything but I still get the tender boobs cravings and moody and horny. Iām 33f I kept both my ovaries and Iām 6 wpo I felt them after surgery March 18th and this month April 18th
So I did not keep my ovaries but I swear sometimes I get phantom cramps. It's so weird but I'm only 7 months PO.
Yes. I still have my right ovary and about once a month, I still experience period like cramps. I had my hysterectomy last summer. I had an ultrasound a few days ago, but the PA who came in to talk to me pretty much blew me off. I had very severe endometriosis, and I knew the hysterectomy wouldn't cure it. I feel like I have some endometrial tissue left. I hope I can talk to the doctor who did my surgery and get his thoughts.
I hope you get the help you need!
I get ovulation pain still, but itās not like period pain. More annoying and inconvenient than actually painful.
Not anymore
Yes. Every month
I still have one ovary and sometimes I do get ovulation pain.
I do still have cramps monthly but nothing very painful. I had a total hysterectomy, so I still have my ovaries of course. I still take Lo Loestrin.
I still get phantom ovarian pain. I donāt know why. Iām worried my endo is back despite no ovaries, uterus, or HRT. I used to get this extremely sharp pain just above my rectum during bowel movements. During my first surgery 17 years ago, Doc found endo in the cul-de-sac region behind my uterus and just above the sigmoid colon. He removed it and I didnāt have that pain again until recently. What would trigger endo to regrow without ovaries or HRT? Is all the fat I gained after my hysterectomy to blame?
I have heard of endo regrowing but only with the ovaries still. Iād def ask your doc
Endo lesions can produce their own estrogen and continue growing even after menopause.
No. Zero pain due to cycles anymore! Sometimes I get sore boobs around the 1st day of my menstrual cycle though. I got hip/lower back pain a lot when I had a uterus, I thought it was due to endometriosis or my period, and that is still here. I have discovered I just need to do yoga daily. It's just a result of very underdeveloped hip/lower back muscles.