Pain after hysterectomy

Posted by jjevitts @jjevitts, Jul 10, 2023

Good morning. One year ago I had a complete hysterectomy for endometrial cancer, Stage 1B, GR 2, followed by bracytherapy. I was feeling great, but in the last 6 months have been having pelvic, mostly lower right side and extreme hip pain. I was just wondering if anyone else has experienced this?
Thanks so much!

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@jjevitts Hello, I recall that you've posted about pain occurring after the hysterectomy you had last year for endometrial cancer. This must be so awful. I have lower back and hip pain from osteoarthritis and some days this pain results in incredible fatigue. Has anything changed since you posted the earlier discussion topics? Has the pain moved or become worse?

I go for cancer surveillance appointments every 4 months. How often do you have these follow up appointments? What does your oncologist say about this pain?

REPLY

Good morning, thank you so much for responding. This pain started about 6 months ago. I had an MRI done in Feb for a different concern. It did show spinal & lumbar degeneration which I’ve had for awhile.
I go every three months for a check up, My oncologist, along with with my primary physician believes it may be scar tissue along with arthritis. I’m not a big pill taker but have been taking ibuprofen 800’s which seems to help.
I’m so sorry to hear about your back & hip pain, both are miserable. I hope you have a great day!

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I did not have a hysterectomy, but I do have lower back and left hip pain. I can no longer sleep on my left side because in the mornings I can barely get out of bed if I sleep on my left side. I just found out I have degenerative lumbar discs between L1 and L 2; L2/L3. However, the pain is mainly in my left hip. The X-rays showed no problem in my hip. The doctor said it is coming from the nerve being compressed in the lumbar spine. I have an adjustable bed and have learned to sleep in the “zero gravity” position. I have never been able to sleep on my back, so this took some getting use to but it has helped with the morning hip pain. I also have acid reflux and cannot sleep on my right side.

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Mine seems to be worse laying down too. That makes so much sense. Thank you so much, I hope you have a wonderful day!

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@sbt19

I did not have a hysterectomy, but I do have lower back and left hip pain. I can no longer sleep on my left side because in the mornings I can barely get out of bed if I sleep on my left side. I just found out I have degenerative lumbar discs between L1 and L 2; L2/L3. However, the pain is mainly in my left hip. The X-rays showed no problem in my hip. The doctor said it is coming from the nerve being compressed in the lumbar spine. I have an adjustable bed and have learned to sleep in the “zero gravity” position. I have never been able to sleep on my back, so this took some getting use to but it has helped with the morning hip pain. I also have acid reflux and cannot sleep on my right side.

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Also I’m wondering if you take anything for the pain?

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Occasional ibuprofen on days when it is acting up. I am also starting physical therapy in a couple of weeks to see if that helps.

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@sbt19

Occasional ibuprofen on days when it is acting up. I am also starting physical therapy in a couple of weeks to see if that helps.

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Same here! Hopefully, it helps both of us!!

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It's not often that I get to inspire a little hope in others, so I'm excited to say that I underwent total hysterectomy + last February and began both pelvic PT and "regular" PT for arthritis, inflammation and pain in my left hip, shoulder (from using my arms to compensate for my lower extremity mobility issues) and ankle. When they did my CT scan prior to the hysterectomy, it revealed severe loss of space between the vertebrae, sacrum and hip joints, as well as severe arthritis in my feet and tendonosis in my ankle. I knew these were areas that didn't feel good, but that was sobering news to add to my cancer diagnosis.
Well, sisters, I have to rave about the results of the PT. I do pelvic PT once per month and work on relaxing high tone in my pelvic floor and stretching of the tissue at the top/back of my vagina and where it was attached to the cartiledge/muscles (not sure which) inside of my spine and can result in very painful muscle spasms and pulling inside so that my arthritis worsened dramatically after the surgery. However, this is helping tremendously. I had expected to have to do kegel exercises on steroids, but it's the opposite in my case.

The other PT I do is more local and I go twice weekly. We started with exercise in a pool (they have a crane thingy with which they can lower you in if needed...very snazzy). It was all about finding ways to stand with balance and then walking up and down the short pool and using the pelvic muscles and muscles in my hips, knees and ankles/feet to maintain balance as other people moved the water in the pool. I have learned a LOT about how to pay attention to and use my body in ways that are FAR less painful. I am also learning what kinds of internal sensations are signals that damage is or may be happening (and I need to stop that movement and find a better way to get the same job done), and which are just the complaining signals of body parts that just need to be moved in the right ways and that I may have been neglecting (especially since the pandemic resulted in my working from home rather than in an office setting where movement to and from and during the day was much more a part of my routine). And...when I asked if I needed a joint doctor or what else I needed for this new diagnosis of arthritis in my hips and they were adamant that I am doing what's needed...strengthening the muscles in and around my pelvis, and increasing the coordination of the nerve signal firing between my ankle, hips, pelvis, spine and shoulders so that my body parts work together much more efficiently. Now I work in the pool once a week and in a gym once a week. They have ways to help with the pain, too, that have nothing to do with ibuprofen, (which is helpful, but doesn't chance the source of the pain by itself), etc. This past week I was having muscle spasms at the top of my shoulder and at the base of my neck. They put some suction cup thingies on those spots and had me move and then build up to lifting some very light weights in specific ways, and it felt weird at first, but then felt good to move that way. Within a day or two the pain had completely subsided (and I looked like I'd escaped from the clutches of a giant octopus, as it left little bruise-like patches that have since cleared up). I am LOVING that I can gently, slowly and without undue pain work my way out of what is otherwise debilitating pain that used to make me freeze like a statue to avoid (and would only get worse and travel to other body parts). THAT was SO depressing! Turns out some of the popping noises that I hear from my joints when I move has more to do with nitrogen gas being expelled from the space between the bones and is not a sign that my body is disintegrating or exploding from within. 🙂
Lastly, and this is a resource that I have had access to only very rarely (2x now) due to distance and cost (not covered by insurance as PT has been except for co-pays). Far-infrared sauna is an incredible resource for joint pain. What is also extremely helpful is called a float pool. It's really just like a gigantic epsom salt bath...a tub about 1.5 feet deep and 8 x 8 feet that is filled with epsom salts and kept warm. It is filtered after every use, so clean and lovely.
You can float on top of this water without making any effort whatsoever, so your body is in that ultimate no-gravity state. Muscles just get to relax, and the epsom salts also help your body to move the "chemistry of pain" (I don't have a better vocabulary to describe this at the moment) out of your body. If I could do that twice a week I would be a different human altogether. Where I live this was costing about $50 per hour and had both options in the same room, so I would do 1/2 hour of sauna (you get very warm and sweat) then shower, then do 1/2 hour in the float tank (then rinse off and go on with your day). After that I had energy and I haven't experienced since becoming a parent 25 years ago, a much-lightened mood and just no pain (and swelling in my ankle reduced dramatically, too). I did it once after my diagnosis before the surgery and once after I'd been cleared to be in water again. Sadly, that business just got flooded so badly that I don't know if it will be revived. I've found other places that do this near where my kids live in the midwest and my daughter-in-law is getting great relief for her tight shoulders from studying for too many hours, too.

That's a lot of "Susie Sunshine" energy and information to throw out there, but all of these are resources that I'd had no real sense could be helpful to me with arthritis, so I just want to chime in and give you some ideas of options to consider, in case they might be helpful in each of your situations. I have never been an "athlete" so wouldn't have thought of these as "for me." And, the idea of having an opportunity for less movement has only seemed like a luxury in the past. But, as I'm sure each of you "gets," I HATE feeling immobilized by pain in my hip and pelvis. I want to be able to roll over in bed without my spine locking up, lift the covers with a pain-free shoulder, reach for something, walk up stairs and be able to get up off the couch without sharp, debilitating pain. And, I DO feel better about myself as the gains from the PT therapy start to add up. I am now walking every day (that it isn't absolutely pouring, which where I live has been all too rare). I am hoping any one of these things may be accessible for each of you and that your pain can become something you can even imagine being in your rear-view mirror as you speed off into a beautiful sunset.

Wow. I am really sensing how blessed I feel in this moment and wishing that kind of hope, escape from pain and fear and finding of some kind of ease for each and every one of you. Please know that I live with fear about my future and grief about what is lost, too. I just feel so lucky that I am now receiving help for pain that pre-dated my surgery and got worse afterward. I know that each of us has a unique set of circumstances and a path to travel that is unique and can be quite lonely. I benefit SO very much from hearing from all of you. Running out of words (finally!). Sending best wishes and hugs to all.

REPLY
@gynosaur42

It's not often that I get to inspire a little hope in others, so I'm excited to say that I underwent total hysterectomy + last February and began both pelvic PT and "regular" PT for arthritis, inflammation and pain in my left hip, shoulder (from using my arms to compensate for my lower extremity mobility issues) and ankle. When they did my CT scan prior to the hysterectomy, it revealed severe loss of space between the vertebrae, sacrum and hip joints, as well as severe arthritis in my feet and tendonosis in my ankle. I knew these were areas that didn't feel good, but that was sobering news to add to my cancer diagnosis.
Well, sisters, I have to rave about the results of the PT. I do pelvic PT once per month and work on relaxing high tone in my pelvic floor and stretching of the tissue at the top/back of my vagina and where it was attached to the cartiledge/muscles (not sure which) inside of my spine and can result in very painful muscle spasms and pulling inside so that my arthritis worsened dramatically after the surgery. However, this is helping tremendously. I had expected to have to do kegel exercises on steroids, but it's the opposite in my case.

The other PT I do is more local and I go twice weekly. We started with exercise in a pool (they have a crane thingy with which they can lower you in if needed...very snazzy). It was all about finding ways to stand with balance and then walking up and down the short pool and using the pelvic muscles and muscles in my hips, knees and ankles/feet to maintain balance as other people moved the water in the pool. I have learned a LOT about how to pay attention to and use my body in ways that are FAR less painful. I am also learning what kinds of internal sensations are signals that damage is or may be happening (and I need to stop that movement and find a better way to get the same job done), and which are just the complaining signals of body parts that just need to be moved in the right ways and that I may have been neglecting (especially since the pandemic resulted in my working from home rather than in an office setting where movement to and from and during the day was much more a part of my routine). And...when I asked if I needed a joint doctor or what else I needed for this new diagnosis of arthritis in my hips and they were adamant that I am doing what's needed...strengthening the muscles in and around my pelvis, and increasing the coordination of the nerve signal firing between my ankle, hips, pelvis, spine and shoulders so that my body parts work together much more efficiently. Now I work in the pool once a week and in a gym once a week. They have ways to help with the pain, too, that have nothing to do with ibuprofen, (which is helpful, but doesn't chance the source of the pain by itself), etc. This past week I was having muscle spasms at the top of my shoulder and at the base of my neck. They put some suction cup thingies on those spots and had me move and then build up to lifting some very light weights in specific ways, and it felt weird at first, but then felt good to move that way. Within a day or two the pain had completely subsided (and I looked like I'd escaped from the clutches of a giant octopus, as it left little bruise-like patches that have since cleared up). I am LOVING that I can gently, slowly and without undue pain work my way out of what is otherwise debilitating pain that used to make me freeze like a statue to avoid (and would only get worse and travel to other body parts). THAT was SO depressing! Turns out some of the popping noises that I hear from my joints when I move has more to do with nitrogen gas being expelled from the space between the bones and is not a sign that my body is disintegrating or exploding from within. 🙂
Lastly, and this is a resource that I have had access to only very rarely (2x now) due to distance and cost (not covered by insurance as PT has been except for co-pays). Far-infrared sauna is an incredible resource for joint pain. What is also extremely helpful is called a float pool. It's really just like a gigantic epsom salt bath...a tub about 1.5 feet deep and 8 x 8 feet that is filled with epsom salts and kept warm. It is filtered after every use, so clean and lovely.
You can float on top of this water without making any effort whatsoever, so your body is in that ultimate no-gravity state. Muscles just get to relax, and the epsom salts also help your body to move the "chemistry of pain" (I don't have a better vocabulary to describe this at the moment) out of your body. If I could do that twice a week I would be a different human altogether. Where I live this was costing about $50 per hour and had both options in the same room, so I would do 1/2 hour of sauna (you get very warm and sweat) then shower, then do 1/2 hour in the float tank (then rinse off and go on with your day). After that I had energy and I haven't experienced since becoming a parent 25 years ago, a much-lightened mood and just no pain (and swelling in my ankle reduced dramatically, too). I did it once after my diagnosis before the surgery and once after I'd been cleared to be in water again. Sadly, that business just got flooded so badly that I don't know if it will be revived. I've found other places that do this near where my kids live in the midwest and my daughter-in-law is getting great relief for her tight shoulders from studying for too many hours, too.

That's a lot of "Susie Sunshine" energy and information to throw out there, but all of these are resources that I'd had no real sense could be helpful to me with arthritis, so I just want to chime in and give you some ideas of options to consider, in case they might be helpful in each of your situations. I have never been an "athlete" so wouldn't have thought of these as "for me." And, the idea of having an opportunity for less movement has only seemed like a luxury in the past. But, as I'm sure each of you "gets," I HATE feeling immobilized by pain in my hip and pelvis. I want to be able to roll over in bed without my spine locking up, lift the covers with a pain-free shoulder, reach for something, walk up stairs and be able to get up off the couch without sharp, debilitating pain. And, I DO feel better about myself as the gains from the PT therapy start to add up. I am now walking every day (that it isn't absolutely pouring, which where I live has been all too rare). I am hoping any one of these things may be accessible for each of you and that your pain can become something you can even imagine being in your rear-view mirror as you speed off into a beautiful sunset.

Wow. I am really sensing how blessed I feel in this moment and wishing that kind of hope, escape from pain and fear and finding of some kind of ease for each and every one of you. Please know that I live with fear about my future and grief about what is lost, too. I just feel so lucky that I am now receiving help for pain that pre-dated my surgery and got worse afterward. I know that each of us has a unique set of circumstances and a path to travel that is unique and can be quite lonely. I benefit SO very much from hearing from all of you. Running out of words (finally!). Sending best wishes and hugs to all.

Jump to this post

Thank you so much for your knowledge, positivity and suggestions!! I’m so glad you are feeling better. I’m starting PT next week which I’m so glad about. I’m so hoping it helps. I’m from a very small community so there isn’t a lot to chose from, but fingers crossed! I will keep you posted! Again, thank you so much!

REPLY
@gynosaur42

It's not often that I get to inspire a little hope in others, so I'm excited to say that I underwent total hysterectomy + last February and began both pelvic PT and "regular" PT for arthritis, inflammation and pain in my left hip, shoulder (from using my arms to compensate for my lower extremity mobility issues) and ankle. When they did my CT scan prior to the hysterectomy, it revealed severe loss of space between the vertebrae, sacrum and hip joints, as well as severe arthritis in my feet and tendonosis in my ankle. I knew these were areas that didn't feel good, but that was sobering news to add to my cancer diagnosis.
Well, sisters, I have to rave about the results of the PT. I do pelvic PT once per month and work on relaxing high tone in my pelvic floor and stretching of the tissue at the top/back of my vagina and where it was attached to the cartiledge/muscles (not sure which) inside of my spine and can result in very painful muscle spasms and pulling inside so that my arthritis worsened dramatically after the surgery. However, this is helping tremendously. I had expected to have to do kegel exercises on steroids, but it's the opposite in my case.

The other PT I do is more local and I go twice weekly. We started with exercise in a pool (they have a crane thingy with which they can lower you in if needed...very snazzy). It was all about finding ways to stand with balance and then walking up and down the short pool and using the pelvic muscles and muscles in my hips, knees and ankles/feet to maintain balance as other people moved the water in the pool. I have learned a LOT about how to pay attention to and use my body in ways that are FAR less painful. I am also learning what kinds of internal sensations are signals that damage is or may be happening (and I need to stop that movement and find a better way to get the same job done), and which are just the complaining signals of body parts that just need to be moved in the right ways and that I may have been neglecting (especially since the pandemic resulted in my working from home rather than in an office setting where movement to and from and during the day was much more a part of my routine). And...when I asked if I needed a joint doctor or what else I needed for this new diagnosis of arthritis in my hips and they were adamant that I am doing what's needed...strengthening the muscles in and around my pelvis, and increasing the coordination of the nerve signal firing between my ankle, hips, pelvis, spine and shoulders so that my body parts work together much more efficiently. Now I work in the pool once a week and in a gym once a week. They have ways to help with the pain, too, that have nothing to do with ibuprofen, (which is helpful, but doesn't chance the source of the pain by itself), etc. This past week I was having muscle spasms at the top of my shoulder and at the base of my neck. They put some suction cup thingies on those spots and had me move and then build up to lifting some very light weights in specific ways, and it felt weird at first, but then felt good to move that way. Within a day or two the pain had completely subsided (and I looked like I'd escaped from the clutches of a giant octopus, as it left little bruise-like patches that have since cleared up). I am LOVING that I can gently, slowly and without undue pain work my way out of what is otherwise debilitating pain that used to make me freeze like a statue to avoid (and would only get worse and travel to other body parts). THAT was SO depressing! Turns out some of the popping noises that I hear from my joints when I move has more to do with nitrogen gas being expelled from the space between the bones and is not a sign that my body is disintegrating or exploding from within. 🙂
Lastly, and this is a resource that I have had access to only very rarely (2x now) due to distance and cost (not covered by insurance as PT has been except for co-pays). Far-infrared sauna is an incredible resource for joint pain. What is also extremely helpful is called a float pool. It's really just like a gigantic epsom salt bath...a tub about 1.5 feet deep and 8 x 8 feet that is filled with epsom salts and kept warm. It is filtered after every use, so clean and lovely.
You can float on top of this water without making any effort whatsoever, so your body is in that ultimate no-gravity state. Muscles just get to relax, and the epsom salts also help your body to move the "chemistry of pain" (I don't have a better vocabulary to describe this at the moment) out of your body. If I could do that twice a week I would be a different human altogether. Where I live this was costing about $50 per hour and had both options in the same room, so I would do 1/2 hour of sauna (you get very warm and sweat) then shower, then do 1/2 hour in the float tank (then rinse off and go on with your day). After that I had energy and I haven't experienced since becoming a parent 25 years ago, a much-lightened mood and just no pain (and swelling in my ankle reduced dramatically, too). I did it once after my diagnosis before the surgery and once after I'd been cleared to be in water again. Sadly, that business just got flooded so badly that I don't know if it will be revived. I've found other places that do this near where my kids live in the midwest and my daughter-in-law is getting great relief for her tight shoulders from studying for too many hours, too.

That's a lot of "Susie Sunshine" energy and information to throw out there, but all of these are resources that I'd had no real sense could be helpful to me with arthritis, so I just want to chime in and give you some ideas of options to consider, in case they might be helpful in each of your situations. I have never been an "athlete" so wouldn't have thought of these as "for me." And, the idea of having an opportunity for less movement has only seemed like a luxury in the past. But, as I'm sure each of you "gets," I HATE feeling immobilized by pain in my hip and pelvis. I want to be able to roll over in bed without my spine locking up, lift the covers with a pain-free shoulder, reach for something, walk up stairs and be able to get up off the couch without sharp, debilitating pain. And, I DO feel better about myself as the gains from the PT therapy start to add up. I am now walking every day (that it isn't absolutely pouring, which where I live has been all too rare). I am hoping any one of these things may be accessible for each of you and that your pain can become something you can even imagine being in your rear-view mirror as you speed off into a beautiful sunset.

Wow. I am really sensing how blessed I feel in this moment and wishing that kind of hope, escape from pain and fear and finding of some kind of ease for each and every one of you. Please know that I live with fear about my future and grief about what is lost, too. I just feel so lucky that I am now receiving help for pain that pre-dated my surgery and got worse afterward. I know that each of us has a unique set of circumstances and a path to travel that is unique and can be quite lonely. I benefit SO very much from hearing from all of you. Running out of words (finally!). Sending best wishes and hugs to all.

Jump to this post

Wow, this float tank sounds absolutely wonderful !!!!
I wonder how I can find this facility in my area. I had never heard of this ! I use to soak in epsom salts regularly, but I do not have any catilage in my shoulders so I can no longer get into and out of my regular bath tub because I have such limited motion in my shoulders.
I am so happy for you that you have found relief in a few area's. My PT to strengthen my core muscles was not helpful. It only made my pelvic floor pain intense and hip and spine pain worse.
Best to you,

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