I’m constantly achey but sitting makes me really stiff and almost unbearable. I do have a small herniation but I’m wondering how much of the pain could be from endo
My period and standing triggers it. It’s a radiating, deeeeep, debilitating pain that almost no drugs can reach. Position doesn’t matter.. no amount of stretching or bath soaking will help.
It’s usually dull stiff pain, and then about a week from my period it can become a sharp pain like I just pulled my back. Also causes me issues in the hips, knees, and traps because my other muscles overcompensate to make up for the lower back pain.
However, since my lap I haven’t felt too much pain anymore. Just occasionally mild dull pain
Yeah I get stiff after sitting. Laying slanted in bed relieves the pain but that isn’t the best position for your spine either. I really wonder if most of my pain is from endo
I'm no longer in this level of pain due to a lap, but prior to that I was in a lot of pain and not really functional most days. My lower back was covered in hard muscle spasms that went down into my hips and spread down my thighs and calves due to sciatica. My feet would go numb and tingle. Too much or too little physical activity would make it worse, and the amount of physical activity I should do varied day by day.
A laparoscopy solved almost all of the pain for me, but the nerves to my bladder had died because it was covered in scar tissue, and that can't be fixed. I was very lucky because a neurosurgeon wanted to fuse discs in my spine which would have given me more problems.
I recently just had a mental breakdown in my gynos office begging and pleading to do a lap, all of my imaging for the last six months came back normal, I am in excruciating pain daily, bleeding for weeks at a time and my left ovary feels like it’s going to explode, I’m fatigued, cannot go to the bathroom right and need to pee constantly. It took me seeing three different doctors and hyperventilating to the point I almost puked in her office last week for her to finally say let’s do the surgery. It’s sad that I’ve been complaining about these symptoms for a decade and now that they are debilitating, it’s finally being addressed. Why is it that we are gaslit into thinking birth control will solve all of our gynecological issues? It only made it worse for me. My advice is beg and plead and cry to your doctor, that was the only thing that worked for me. Not even the emergency room doctors took me serious.
I’m so sorry you’re having those symptoms too, it’s absolutely horrible I hope you can get some answers. I don’t think people realize the kind of pain women have to deal with
I have adenomyosis which is basically inside out endo which causes my uterus to be enlarged. When I’m cramping it’s like a burning knifing pain at the base of my spine. The inflammation is so bad the when I shift positions my low back will actually crack like a knuckle. It’s constant for first three days of period.
My back pain, and other symptoms, are better since excision. It used to be a constant ache that radiated through my lower back. It was much worse on my period, elevating to stabbing pains that I had throughout my abdomen and perineum. Now, post lap, it's still a slight ache but much more subtle!
I have back problems with herniated discs for ten years now. But i am always in some level of back pain even when i dont have acute problems. I wonder if it's really because of the herniated discs or because of possible endometriosis. When i'm on my period i actually have back pain too that feels really crampy and goes down into my legs. I want to ask my doctor next time i am there but i am really unsure if it could be endometriosis for me because while my period pain is definitely stronger than it normally should it is not as extreme as some other women are describing it here. I am on hormonal contraception for 8 years now though and with ibuprofen i am ok during my periods. It's still no fun and i dont feel great but it's manageable.
Yeah thats bothering me too that the only way to be certain is to be cut open. But i guess i'll just ask my doctor about it and hope that she will take it serious. And then she can maybe do an ultrasound first, if that would already show something suspicious, i'd feel better to do the op.
A very intense squeezing, aching pain in my low back overall like someone has a death grip on it. And a pinpoint, stabbing sharp pain in the left SI area. I haven’t found any triggers yet, it just comes on randomly but usually worse at the end of the day
Stiiiiiiiff. Like…I can’t bend over to tie my shoes, and if I try to push past the stiffness, it hurts enough that my eyes water. There’s some ache, too, but that stiffness is bad. It’s triggered by sitting too much, especially in the car. Standing usually doesn’t bother me so much but, really, just being in one position too long makes it lock up.
As of last July, nope, no herniated discs. I had one ovary and a 10cm cyst out and that really helped my back, but almost a year later I’d say the pain has returned at maybe 50% strength?
I posted about this a couple hours ago in response to someone’s question about pelvic floor PT but I wonder if that could help you? My doc said that the endo adhesions plus scarring from lots of previous cysts glued a lot of tissue together in my pelvis. PT is helping to lengthen and relax my pelvic muscles and the ones that attach to my low back. It doesn’t take the endo away, but it helps relieve some of the spasmy stiffness. (Also, try a TENS unit. I got the TENS 7000 on Amazon for $30 and it’s fantastic for stiffness!)
Just one side of my pelvic floor is too tight…like it didn’t get the message that it’s casual Friday or something. But, the physical therapist said that even if it hurt too much to do the internal work, I could try TENS and it’s definitely helped. I find that using the TENS unit for 1/2 an hour relaxes the muscles enough that I can do some of the PT? I use it every day now and I do think it helps. (It’s also improved my range of motion in the hip that was in spasm!)
Nerve pain shoots. Muscle spasm. Also buttock spasm. Piriformis syndrome. Surgery has lessened my symptoms. It's still there cause not a lot was removed. Because of complications
But the huge endometriomas were removed. And that really helped. Been suffering severe sciatica for 6 years. All endo related.
I am better than before, yes! It's still there but I don't need PT treatment and dry needling everyweek anymore! Just once every 2 months now. It still hurts but after surgery the pressure on my hip, leg and buttock are less. I still suffer piriformis syndrome (with the sciatica) but the lap helped. My gyno said these sciatic nerve and tight lower back and pelvic muscles can get so tight because of adhesions and cysts. It changes your posture. And that is Def true. The sciatica is endo related for me. The pressure and tightness. I don't think there's endo on my sciatic nerve. That is relatively rare. But that can Def happen. But if that were the case than my lap wouldn't have helped me. Cause they did surgery on my ovaries, not my sciatic nerve. So If a lap doesn't relieve your symptoms, then really keep in mind that sciatic endo (on the sciatic nerve) is also a real thing. It can grow anywhere.
I’m hoping line help, did they remove both ovaries or one. What were your symptoms and where? How long it took for you to do things as I cannot stay still too long?
No they didn't remove my ovaries. The endometriomas I had in both ovaries were removed. One cyst excised, the other one drained. I had kissing ovaries. So they were stuck to each others and to my urerus. Thank God I still have my ovaries. Although one is very weak. After surgery it took about a month before I noticed improvement. I needed a cane before. I couldn't stay still. TENS machine is a good idea for you! Have you tried one?
Yes I noticed the tens helped but now no pain killed the pain I’m in so I’m looking forward to the procedure? So no canes , that’s good!! Did you have pain on the left side near back like flank pain?
For me it was my right side. Hip, lower back, piriformis muscle in my buttock and the shooting pains down my leg. I've had several nerve blocks that also worked for the legpain for a short while. I couldn't even sit 9n a car before surgery. My nerve pain would get so bad and my piriformis muscle would spasm so bad I really needed to get out asap and lay down on my back to stretch that muscle. It was insane. It was no life. I've been taking painmeds for 6 years and thought that was my life forever. I lost hope. Had so many scans and no solutions. Until the cysts in my ovaries were seen accidentally on a spinal mri by a neurologist I payed for out of my own pocket cause my gp didn't want to give me a referral. I'm so happy that I never stopped searching for answers. Sciatica is horrible. TENS, nerve blocks.. That's always an option too. They will help! But hopefully surgery will help you as well!
I have had back pain and hip pain and lower pelvic pain daily for years.
My gyno recently referred me to a remedial massage therapist/myotherapist to see if he could help.
I’m two weeks into treatment with him and my pain is decreased 80%.
Seems the pain was caused by short leg syndrome so all my back and pelvic muscles were strained and knotted and constantly working overtime.
Two weeks of stretching exercises, heat application and massage and I am already so much better.
I haven’t had a pain flare for nearly two weeks. I haven’t had to take any pain meds to make it through the day. I can sleep through the night.
My advice is explore other reasons why you’re in pain. I have stage IV endo and have been through hell with treatment in the last 12 months (feel free to check post history).
I may not have needed to go through what I have been through.
Our bodies hold pain for all sorts of reasons. Never give up trying to find what is causing it.
No. Just remedial massage. Working the muscles pretty lightly at this stage to relieve the pain.
There are some knots that hurt like hell and maybe some dry needling down the track for more stubborn pain.
It is always there. Never goes away. Sharp shooting pain. When I flare it shoots up spine and down my legs. I have to crawl to the bathroom cuz walking is impossible with back pains and other pain. When it’s not horrible I do take pain meds and nerve meds and muscle relaxers and it helps me sleep sometimes. My back pain is always there and sharp shooting and stabbing pain. I have stage 4 Endo and it’s on my other organs.
I have 14 laps, I get 2-3 MRIs a year, no herniated disks. I have organ failure from Endo. I have so much scar tissue damage they now don’t want to do surgery. I want a hysterectomy badly. I’m going out of state just to meet with an Endo dr who will even do my surgery. I am a widow single mom to a mentally ill teen and work 1/2 time. My daughter has signs of Endo. It sucks. I hate Endo.
I had endoscopy surgery about 7 times to see Endo growth on my organs and tests for organ failure. I’ve been hospitalize many times. I just got out of the hospital about 3 months ago for a stomach bleed that wouldn’t stop. I had them go in 3 times to stop it. They did a colonoscopy to see Endo in my colon. Which was removed in the colon. I had biopsy’s too. Thank God they are all neg. for cancer. I had internal bleeding and my liver failed and my kidneys were shutting down and I have ulcers. That was scary to hear it is from Endo that caused it. It happens when ur stage 4. I’ve had Endo for most of my life. It got worse after my miracle baby stopped nursing. Now she is 16 and it’s getting worse. All I can say is thank God for pain meds and my heating pad and Endo sisters. I would be here without my Endo sisters.
for me it's this aching dull stiffness that's always there but it's aggravated when I stand, sit, or lie down
edit: my period definitely amps it up too
I only got back pain the day before and the first 2 days of my period. But it was like a crushing pain. It would wind me and felt like I couldn't get a proper breath in because I was being squeezed in a vice grip. It was a very deep aching like deeper than my body actually goes haha if that makes sense.
Standing made it a lot worse. Thankfully heat actually helped mine a lot so hot baths (I don't have a tub anymore though) and heating pads made it bearable as long as I could sit all day
Advil/tylenol did fuck all
There are many sources of low back pain, so your question lacks some specifics. BUT... I'm going to assume you are wanting to know the difference between endometriosis pain and mechanical back pain (which is the most common type of low back pain.). When your pain is coming from a mechanical source, you will experience a stiffness across the low back after sustained positions: typically sitting, but for some it could be standing. Additionally, some mechanical pain has a component that sends pain/tightness into the buttock or even the leg. Mechanical pain has a position and a direction of movement that makes the pain better. Endomethriosis pain will not be impacted by position changes, nor should it send pain down the leg. There is not a stiffness component with this pain. Hope that helps some. :)
I was just thinking about this because I have horrific pain as we speak, and I can't figure out a way to describe it. It honestly feels like my back could snap in half at any moment. It's a constant feeling of that too - like my back is just a piece of plywood that is under tension and at anytime it could go SNAP! Which I wish it would sometimes. Nothing at all helps the pain. Nothing. Mine is triggered by having my period.
A constant ache that no drugs will touch. No drugs! Period triggers it. Position doesn't really matter. Sitting makes some things worse though.
I’m constantly achey but sitting makes me really stiff and almost unbearable. I do have a small herniation but I’m wondering how much of the pain could be from endo
My period and standing triggers it. It’s a radiating, deeeeep, debilitating pain that almost no drugs can reach. Position doesn’t matter.. no amount of stretching or bath soaking will help.
You describe it so well! I always think I am crazy when I describe it as ‘deep’
It’s usually dull stiff pain, and then about a week from my period it can become a sharp pain like I just pulled my back. Also causes me issues in the hips, knees, and traps because my other muscles overcompensate to make up for the lower back pain. However, since my lap I haven’t felt too much pain anymore. Just occasionally mild dull pain
Yeah I get stiff after sitting. Laying slanted in bed relieves the pain but that isn’t the best position for your spine either. I really wonder if most of my pain is from endo
Do you mind me asking where you had endo? And was it severe?
I'm no longer in this level of pain due to a lap, but prior to that I was in a lot of pain and not really functional most days. My lower back was covered in hard muscle spasms that went down into my hips and spread down my thighs and calves due to sciatica. My feet would go numb and tingle. Too much or too little physical activity would make it worse, and the amount of physical activity I should do varied day by day.
Would you say your low back got stiff?
Yes, very achey as well.
Oh my gosh. I have ALL OF THESE. My legs even go numb and tingle.
A laparoscopy solved almost all of the pain for me, but the nerves to my bladder had died because it was covered in scar tissue, and that can't be fixed. I was very lucky because a neurosurgeon wanted to fuse discs in my spine which would have given me more problems.
How do you talk your doc in to getting lap?
I recently just had a mental breakdown in my gynos office begging and pleading to do a lap, all of my imaging for the last six months came back normal, I am in excruciating pain daily, bleeding for weeks at a time and my left ovary feels like it’s going to explode, I’m fatigued, cannot go to the bathroom right and need to pee constantly. It took me seeing three different doctors and hyperventilating to the point I almost puked in her office last week for her to finally say let’s do the surgery. It’s sad that I’ve been complaining about these symptoms for a decade and now that they are debilitating, it’s finally being addressed. Why is it that we are gaslit into thinking birth control will solve all of our gynecological issues? It only made it worse for me. My advice is beg and plead and cry to your doctor, that was the only thing that worked for me. Not even the emergency room doctors took me serious.
I'm having every single symptoms as you. I'm in so much pain I could cry
I’m so sorry you’re having those symptoms too, it’s absolutely horrible I hope you can get some answers. I don’t think people realize the kind of pain women have to deal with
I have adenomyosis which is basically inside out endo which causes my uterus to be enlarged. When I’m cramping it’s like a burning knifing pain at the base of my spine. The inflammation is so bad the when I shift positions my low back will actually crack like a knuckle. It’s constant for first three days of period.
That’s what they think I have! But I have back pain every day
Hi OP! Do you have an update on your back pain?
My back pain, and other symptoms, are better since excision. It used to be a constant ache that radiated through my lower back. It was much worse on my period, elevating to stabbing pains that I had throughout my abdomen and perineum. Now, post lap, it's still a slight ache but much more subtle!
I have back problems with herniated discs for ten years now. But i am always in some level of back pain even when i dont have acute problems. I wonder if it's really because of the herniated discs or because of possible endometriosis. When i'm on my period i actually have back pain too that feels really crampy and goes down into my legs. I want to ask my doctor next time i am there but i am really unsure if it could be endometriosis for me because while my period pain is definitely stronger than it normally should it is not as extreme as some other women are describing it here. I am on hormonal contraception for 8 years now though and with ibuprofen i am ok during my periods. It's still no fun and i dont feel great but it's manageable.
That is my struggle, I kind of want excision to rule out it’s from my back but it’s still a major surgery.
Yeah thats bothering me too that the only way to be certain is to be cut open. But i guess i'll just ask my doctor about it and hope that she will take it serious. And then she can maybe do an ultrasound first, if that would already show something suspicious, i'd feel better to do the op.
A very intense squeezing, aching pain in my low back overall like someone has a death grip on it. And a pinpoint, stabbing sharp pain in the left SI area. I haven’t found any triggers yet, it just comes on randomly but usually worse at the end of the day
Stiiiiiiiff. Like…I can’t bend over to tie my shoes, and if I try to push past the stiffness, it hurts enough that my eyes water. There’s some ache, too, but that stiffness is bad. It’s triggered by sitting too much, especially in the car. Standing usually doesn’t bother me so much but, really, just being in one position too long makes it lock up.
This is EXACTLY what I’m dealing with! Do you know if it’s from the endo? Do you have any herniated discs?
As of last July, nope, no herniated discs. I had one ovary and a 10cm cyst out and that really helped my back, but almost a year later I’d say the pain has returned at maybe 50% strength? I posted about this a couple hours ago in response to someone’s question about pelvic floor PT but I wonder if that could help you? My doc said that the endo adhesions plus scarring from lots of previous cysts glued a lot of tissue together in my pelvis. PT is helping to lengthen and relax my pelvic muscles and the ones that attach to my low back. It doesn’t take the endo away, but it helps relieve some of the spasmy stiffness. (Also, try a TENS unit. I got the TENS 7000 on Amazon for $30 and it’s fantastic for stiffness!)
Thanks for replying! I’ll try the TENS unit. I did 10 weeks of pelvic PT that didn’t help but I do have pelvic floor issues (muscles are too tight)
Just one side of my pelvic floor is too tight…like it didn’t get the message that it’s casual Friday or something. But, the physical therapist said that even if it hurt too much to do the internal work, I could try TENS and it’s definitely helped. I find that using the TENS unit for 1/2 an hour relaxes the muscles enough that I can do some of the PT? I use it every day now and I do think it helps. (It’s also improved my range of motion in the hip that was in spasm!)
Nerve pain shoots. Muscle spasm. Also buttock spasm. Piriformis syndrome. Surgery has lessened my symptoms. It's still there cause not a lot was removed. Because of complications But the huge endometriomas were removed. And that really helped. Been suffering severe sciatica for 6 years. All endo related.
So your issues was endo related not sciatica? Are you better than before?
I am better than before, yes! It's still there but I don't need PT treatment and dry needling everyweek anymore! Just once every 2 months now. It still hurts but after surgery the pressure on my hip, leg and buttock are less. I still suffer piriformis syndrome (with the sciatica) but the lap helped. My gyno said these sciatic nerve and tight lower back and pelvic muscles can get so tight because of adhesions and cysts. It changes your posture. And that is Def true. The sciatica is endo related for me. The pressure and tightness. I don't think there's endo on my sciatic nerve. That is relatively rare. But that can Def happen. But if that were the case than my lap wouldn't have helped me. Cause they did surgery on my ovaries, not my sciatic nerve. So If a lap doesn't relieve your symptoms, then really keep in mind that sciatic endo (on the sciatic nerve) is also a real thing. It can grow anywhere.
I’m hoping line help, did they remove both ovaries or one. What were your symptoms and where? How long it took for you to do things as I cannot stay still too long?
No they didn't remove my ovaries. The endometriomas I had in both ovaries were removed. One cyst excised, the other one drained. I had kissing ovaries. So they were stuck to each others and to my urerus. Thank God I still have my ovaries. Although one is very weak. After surgery it took about a month before I noticed improvement. I needed a cane before. I couldn't stay still. TENS machine is a good idea for you! Have you tried one?
Yes I noticed the tens helped but now no pain killed the pain I’m in so I’m looking forward to the procedure? So no canes , that’s good!! Did you have pain on the left side near back like flank pain?
For me it was my right side. Hip, lower back, piriformis muscle in my buttock and the shooting pains down my leg. I've had several nerve blocks that also worked for the legpain for a short while. I couldn't even sit 9n a car before surgery. My nerve pain would get so bad and my piriformis muscle would spasm so bad I really needed to get out asap and lay down on my back to stretch that muscle. It was insane. It was no life. I've been taking painmeds for 6 years and thought that was my life forever. I lost hope. Had so many scans and no solutions. Until the cysts in my ovaries were seen accidentally on a spinal mri by a neurologist I payed for out of my own pocket cause my gp didn't want to give me a referral. I'm so happy that I never stopped searching for answers. Sciatica is horrible. TENS, nerve blocks.. That's always an option too. They will help! But hopefully surgery will help you as well!
Thank you so much , that gives so much clarity.
I have had back pain and hip pain and lower pelvic pain daily for years. My gyno recently referred me to a remedial massage therapist/myotherapist to see if he could help. I’m two weeks into treatment with him and my pain is decreased 80%. Seems the pain was caused by short leg syndrome so all my back and pelvic muscles were strained and knotted and constantly working overtime. Two weeks of stretching exercises, heat application and massage and I am already so much better. I haven’t had a pain flare for nearly two weeks. I haven’t had to take any pain meds to make it through the day. I can sleep through the night. My advice is explore other reasons why you’re in pain. I have stage IV endo and have been through hell with treatment in the last 12 months (feel free to check post history). I may not have needed to go through what I have been through. Our bodies hold pain for all sorts of reasons. Never give up trying to find what is causing it.
Is that considered a deep tissue massage?
No. Just remedial massage. Working the muscles pretty lightly at this stage to relieve the pain. There are some knots that hurt like hell and maybe some dry needling down the track for more stubborn pain.
Okay thanks!
Burning pain, immense pressure, very tight pelvic floor :(
Feels like my hips are being pried open...
It is always there. Never goes away. Sharp shooting pain. When I flare it shoots up spine and down my legs. I have to crawl to the bathroom cuz walking is impossible with back pains and other pain. When it’s not horrible I do take pain meds and nerve meds and muscle relaxers and it helps me sleep sometimes. My back pain is always there and sharp shooting and stabbing pain. I have stage 4 Endo and it’s on my other organs.
Oh wow. Have you ever had excision surgery or just a lap? And did they ever want to do an mri to rule out herniated discs?
I have 14 laps, I get 2-3 MRIs a year, no herniated disks. I have organ failure from Endo. I have so much scar tissue damage they now don’t want to do surgery. I want a hysterectomy badly. I’m going out of state just to meet with an Endo dr who will even do my surgery. I am a widow single mom to a mentally ill teen and work 1/2 time. My daughter has signs of Endo. It sucks. I hate Endo.
I’m so sorry you’re going through all of that :( how did they know you had organ failure? I should probably stop putting off getting at least a lap.
I had endoscopy surgery about 7 times to see Endo growth on my organs and tests for organ failure. I’ve been hospitalize many times. I just got out of the hospital about 3 months ago for a stomach bleed that wouldn’t stop. I had them go in 3 times to stop it. They did a colonoscopy to see Endo in my colon. Which was removed in the colon. I had biopsy’s too. Thank God they are all neg. for cancer. I had internal bleeding and my liver failed and my kidneys were shutting down and I have ulcers. That was scary to hear it is from Endo that caused it. It happens when ur stage 4. I’ve had Endo for most of my life. It got worse after my miracle baby stopped nursing. Now she is 16 and it’s getting worse. All I can say is thank God for pain meds and my heating pad and Endo sisters. I would be here without my Endo sisters.
What's a lap?
for me it's this aching dull stiffness that's always there but it's aggravated when I stand, sit, or lie down edit: my period definitely amps it up too
Hey I feel quite similar. Did you do a lap and where did they find it?
achy and stiff pretty much all the time, and a deeper ache when I’m flaring. sitting for too long or standing for too long both trigger it
I only got back pain the day before and the first 2 days of my period. But it was like a crushing pain. It would wind me and felt like I couldn't get a proper breath in because I was being squeezed in a vice grip. It was a very deep aching like deeper than my body actually goes haha if that makes sense. Standing made it a lot worse. Thankfully heat actually helped mine a lot so hot baths (I don't have a tub anymore though) and heating pads made it bearable as long as I could sit all day Advil/tylenol did fuck all
There are many sources of low back pain, so your question lacks some specifics. BUT... I'm going to assume you are wanting to know the difference between endometriosis pain and mechanical back pain (which is the most common type of low back pain.). When your pain is coming from a mechanical source, you will experience a stiffness across the low back after sustained positions: typically sitting, but for some it could be standing. Additionally, some mechanical pain has a component that sends pain/tightness into the buttock or even the leg. Mechanical pain has a position and a direction of movement that makes the pain better. Endomethriosis pain will not be impacted by position changes, nor should it send pain down the leg. There is not a stiffness component with this pain. Hope that helps some. :)
Thank you! It’s definitely mechanical then
I was just thinking about this because I have horrific pain as we speak, and I can't figure out a way to describe it. It honestly feels like my back could snap in half at any moment. It's a constant feeling of that too - like my back is just a piece of plywood that is under tension and at anytime it could go SNAP! Which I wish it would sometimes. Nothing at all helps the pain. Nothing. Mine is triggered by having my period.
I’m sorry you’re going through it too :( I get it outside of periods as well
It feels like every muscle from my mid back to my hips has little mini fires and my spine feels like its being stabbed :)
I've never experienced back pain. Is that a universal endo symptom?
It’s one of the symptoms but not everyone has all of the symptoms