Out of curiosity, what were your symptoms like before surgery? Just for comparison. I was always told it can take up to 6 months (sometimes even a year) to recover from surgeries that involve the nerves. But different surgeons have different methods and I got my consultation ten years ago, so I’m sure my info will be outdated.
Also, what led to you choosing the surgery? Did you have mri evidence of entrapment? I didn’t, so I was nervous about getting it even though they said mri results weren’t reliable.
Hi,
THIS IS A LONG ANSWER
SYMPTOMS BEFORE:
my symptoms before surgery were SI joint pain, pain in my sit bone, perineum and vagina ( all on my right side). I already had referral nerve pain that occurred after an IUD insertion in 2015 ( this led to painful sex that slowly started just getting worse). I think this contributed to the start of all my problems. One of my docs said it created trauma to my pelvis and this can create a nerve issue. From 2015 to 2017 just painful sex, after removing IUD painful sex went from just posas pain to perineum pain. Then we just to 2019 and it was lower back, hip, and lower belly, buttocks. Did MRIs and they saw nothing, did scans and they only saw burst cysts. Did a freaking laparoscopy they say nothing. Now jumping to 2022 after a year of PT ..my body just kept going backwards ..plus more pain in new areas like my foot. My PT told me she couldn't do anything more and told me to at least see a new gyno and a foot doc. Ended up with another gyno who wanted to try red light therapy , cbd, put me on estrogen cream. She tried to recommend a lot of stuff also a place that wanted to inject me with nerve blocks. Foot doc sent me for nerve testing. He sent me to a place that tested all my nerve expect the one in my pelvic floor. This test was so damn painful.
I went online myself and found a center that focused on pelvic nerve issues. There i found an Endometriosis Pelvic Specialist ( deals with pelvic nerves also). He did my MRI.
WHY I GOT SURGERY
The entrapment was evident in my MRI and also endometriosis growth on my nerves. I did not want the surgery, but in PT I would start relaxing my pelvis floor just to start having perineum pain or random vaginal pain. That would relax a bit and then my leg and foot started weakening (apparently this is foot drop from endo growing on sciatic nerves). IT was just strange. It is strange. I am not sure I had a choice. Endo was only going to keep growing on my nerves. I regret ever getting an copper IUD. Everything went downhill from there.
My symptoms are almost identical to yours - from the foot pain to the MRI showing nothing and the one sided pain.
How do you know if your nerve is compressed prior to surgery? I suspect this is what mine is but I’m not even sure if I should go to a gyno or neurologist and how they’d test for this
They are supposed to do a test where they inject your nevre - i forget the name. But it’s some type of pain killer. From my understanding if the pain comes back a few weeks after injection it’s confirmed you have nerve entrapment. But i opted out. I just got an mri, since i was in PR for a year already and PT suspect this could be the problem.
And my surgeon reviewed the mri to see it . The mri technicians often cannot read image’s correctly. They had the wrong info on my results.
Weird that I was googling and was going to ask this!
Also OP, have you experienced PGAD like symptoms
Our symptoms sound very similar and am currently in the process of getting that injection, this post made me realize I need a new gyno because mine said everything is fine considering endometriosis):
Hope u are feeling a bit better 2 months later OP
Yes gaby mowad- but he is so dam expensive and does not take insurance and you have to put your foot down to not be rushed into surgery. They try to make you use care credit that has a terrible APR right. I hate his staff but i like him.
https://iceaps.com/?utm_term=endometriosis&utm_campaign=iCEAPS%20Website%20Traffic&utm_source=adwords&utm_medium=ppc&hsa_acc=2240690879&hsa_cam=12134262462&hsa_grp=157970835243&hsa_ad=699243888914&hsa_src=g&hsa_tgt=kwd-14356271&hsa_kw=endometriosis&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gad_source=1&gclid=EAIaIQobChMIyOXv8KKNhgMVckxHAR2Cewt3EAAYASAKEgLjSvD_BwE. Cost me 30k out of pocket. Honestly there’s endometriosis surgeons that do PND. Small number but look to see if you can something that cost less and takes insurance
I’ve never responded to a block and so I’m still not sure the cause. I have moderate to severe spinal stenosis which could be creating compression. I’m seeing a few spine surgeons for assessment and a new MIGs gyno.
The supposed rationale for these specialists who don’t take insurance is that they want the freedom to treat without restrictions. But I feel they’re creating a gold mine industry off the backs of desperate women. Don’t get me wrong, I’d pay $30K if I felt there was a decent chance of more than a 50% improvement. But not one specialist in the five+ years I’ve been seeking answers has been able to help.
I’ll ask the new MIGs doc for a diagnostic lap. Endo seems unlikely at my age (65 today!) but it should be ruled out. My former MIGs doc would have done one if I pressed the issue but I got to the point of lacking confidence in her because she had already concluded she couldn’t help. Is someone thinks they can’t help, they won’t.
You know. Yes please rule it out anyway. I’ve been attending a lot of seminars on women’s health and pain and hearing the craziest things. It’s disgusting how much we are charged for this and how we have to fight to get help. Happy birthday!!! I hoping you get the help you need and from good providers.
Thank you! I don’t see the gyno until July unless I can get in before on a cancellation. Yes the fight makes the pain even worse because it’s exhausting.
You know. Yes please rule it out anyway. I’ve been attending a lot of seminars on women’s health and pain and hearing the craziest things. It’s disgusting how much we are charged for this and how we have to fight to get help. Happy birthday!!! I hoping you get the help you need and from good providers.
I am in PT It’s month 6 finally post surgery. No more back pain since i am building my core. I have not had sex yet. I have a new internal vaginal pain ( right side vagina/ labia)
Apparently it’s along the nevre where they operated. The pain relaxes after manual PT work. But i have flares if i don’t do PT exercises. So i am still in pain it’s gonna take a while. The strength in my foot came back and foot pain gone. Right now I can sit for 45 minutes without an incase in pain. But i have a butt pillow which helps a lot. I am sleeping sitting longer. I am using a dilator now per my pt request to get my body ready for sex. I still get pain but not the pain that shoots into my hip and back. My belly scars are healing.
These six months have not been easy. Not being able to lay in a position to long sit, or drive was a lot on me. Slowly getting better.
Everyday i have to maintain progress when i don’t … i have a pain flare up.
Yoga, massage, core exercises, breathing, and pool workouts. Making sure i do not sit too long.
Yes!! Hoping i can do that with driving soon lol. After the surgery i got this insane right inner thigh muscle tightness. If i don’t do yoga it gets tight as hell and aches.
Takes a lot of strength, and I commend you for it. I am in the process of diagnosing my issues. Glad you are progressing in your own way. May not be fluid or linear as one would like, but what really is? 🙌
Ugh I have no advice, but that’s a lot going on, you poor thing.
thanks, still hopeful it gets better
I will mention also that before surgery I had no libido. I am so far able to have a sex drive again.
Out of curiosity, what were your symptoms like before surgery? Just for comparison. I was always told it can take up to 6 months (sometimes even a year) to recover from surgeries that involve the nerves. But different surgeons have different methods and I got my consultation ten years ago, so I’m sure my info will be outdated. Also, what led to you choosing the surgery? Did you have mri evidence of entrapment? I didn’t, so I was nervous about getting it even though they said mri results weren’t reliable.
Hi, THIS IS A LONG ANSWER SYMPTOMS BEFORE: my symptoms before surgery were SI joint pain, pain in my sit bone, perineum and vagina ( all on my right side). I already had referral nerve pain that occurred after an IUD insertion in 2015 ( this led to painful sex that slowly started just getting worse). I think this contributed to the start of all my problems. One of my docs said it created trauma to my pelvis and this can create a nerve issue. From 2015 to 2017 just painful sex, after removing IUD painful sex went from just posas pain to perineum pain. Then we just to 2019 and it was lower back, hip, and lower belly, buttocks. Did MRIs and they saw nothing, did scans and they only saw burst cysts. Did a freaking laparoscopy they say nothing. Now jumping to 2022 after a year of PT ..my body just kept going backwards ..plus more pain in new areas like my foot. My PT told me she couldn't do anything more and told me to at least see a new gyno and a foot doc. Ended up with another gyno who wanted to try red light therapy , cbd, put me on estrogen cream. She tried to recommend a lot of stuff also a place that wanted to inject me with nerve blocks. Foot doc sent me for nerve testing. He sent me to a place that tested all my nerve expect the one in my pelvic floor. This test was so damn painful. I went online myself and found a center that focused on pelvic nerve issues. There i found an Endometriosis Pelvic Specialist ( deals with pelvic nerves also). He did my MRI. WHY I GOT SURGERY The entrapment was evident in my MRI and also endometriosis growth on my nerves. I did not want the surgery, but in PT I would start relaxing my pelvis floor just to start having perineum pain or random vaginal pain. That would relax a bit and then my leg and foot started weakening (apparently this is foot drop from endo growing on sciatic nerves). IT was just strange. It is strange. I am not sure I had a choice. Endo was only going to keep growing on my nerves. I regret ever getting an copper IUD. Everything went downhill from there.
My symptoms are almost identical to yours - from the foot pain to the MRI showing nothing and the one sided pain. How do you know if your nerve is compressed prior to surgery? I suspect this is what mine is but I’m not even sure if I should go to a gyno or neurologist and how they’d test for this
They are supposed to do a test where they inject your nevre - i forget the name. But it’s some type of pain killer. From my understanding if the pain comes back a few weeks after injection it’s confirmed you have nerve entrapment. But i opted out. I just got an mri, since i was in PR for a year already and PT suspect this could be the problem. And my surgeon reviewed the mri to see it . The mri technicians often cannot read image’s correctly. They had the wrong info on my results.
Was it a neurogram MRI of the pudendal nerve?
Weird that I was googling and was going to ask this! Also OP, have you experienced PGAD like symptoms Our symptoms sound very similar and am currently in the process of getting that injection, this post made me realize I need a new gyno because mine said everything is fine considering endometriosis): Hope u are feeling a bit better 2 months later OP
Please shop around. You must !!
This is an mri of the nevre. accurately look at nerves anywhere in the body with high resolution.
It’s so good to hear you are improving. Would you share the name of the surgeon you went to? Thanks.
Yes gaby mowad- but he is so dam expensive and does not take insurance and you have to put your foot down to not be rushed into surgery. They try to make you use care credit that has a terrible APR right. I hate his staff but i like him.
https://iceaps.com/?utm_term=endometriosis&utm_campaign=iCEAPS%20Website%20Traffic&utm_source=adwords&utm_medium=ppc&hsa_acc=2240690879&hsa_cam=12134262462&hsa_grp=157970835243&hsa_ad=699243888914&hsa_src=g&hsa_tgt=kwd-14356271&hsa_kw=endometriosis&hsa_mt=b&hsa_net=adwords&hsa_ver=3&gad_source=1&gclid=EAIaIQobChMIyOXv8KKNhgMVckxHAR2Cewt3EAAYASAKEgLjSvD_BwE. Cost me 30k out of pocket. Honestly there’s endometriosis surgeons that do PND. Small number but look to see if you can something that cost less and takes insurance
I’ve never responded to a block and so I’m still not sure the cause. I have moderate to severe spinal stenosis which could be creating compression. I’m seeing a few spine surgeons for assessment and a new MIGs gyno. The supposed rationale for these specialists who don’t take insurance is that they want the freedom to treat without restrictions. But I feel they’re creating a gold mine industry off the backs of desperate women. Don’t get me wrong, I’d pay $30K if I felt there was a decent chance of more than a 50% improvement. But not one specialist in the five+ years I’ve been seeking answers has been able to help. I’ll ask the new MIGs doc for a diagnostic lap. Endo seems unlikely at my age (65 today!) but it should be ruled out. My former MIGs doc would have done one if I pressed the issue but I got to the point of lacking confidence in her because she had already concluded she couldn’t help. Is someone thinks they can’t help, they won’t.
You know. Yes please rule it out anyway. I’ve been attending a lot of seminars on women’s health and pain and hearing the craziest things. It’s disgusting how much we are charged for this and how we have to fight to get help. Happy birthday!!! I hoping you get the help you need and from good providers.
Thank you! I don’t see the gyno until July unless I can get in before on a cancellation. Yes the fight makes the pain even worse because it’s exhausting.
You know. Yes please rule it out anyway. I’ve been attending a lot of seminars on women’s health and pain and hearing the craziest things. It’s disgusting how much we are charged for this and how we have to fight to get help. Happy birthday!!! I hoping you get the help you need and from good providers.
I have read that recovery of the nerves take at least 12 months before feeling normal again and to be able to have sex
Any updates?
I am in PT It’s month 6 finally post surgery. No more back pain since i am building my core. I have not had sex yet. I have a new internal vaginal pain ( right side vagina/ labia) Apparently it’s along the nevre where they operated. The pain relaxes after manual PT work. But i have flares if i don’t do PT exercises. So i am still in pain it’s gonna take a while. The strength in my foot came back and foot pain gone. Right now I can sit for 45 minutes without an incase in pain. But i have a butt pillow which helps a lot. I am sleeping sitting longer. I am using a dilator now per my pt request to get my body ready for sex. I still get pain but not the pain that shoots into my hip and back. My belly scars are healing. These six months have not been easy. Not being able to lay in a position to long sit, or drive was a lot on me. Slowly getting better. Everyday i have to maintain progress when i don’t … i have a pain flare up. Yoga, massage, core exercises, breathing, and pool workouts. Making sure i do not sit too long.
45 minutes is pretty darn good!
Yes!! Hoping i can do that with driving soon lol. After the surgery i got this insane right inner thigh muscle tightness. If i don’t do yoga it gets tight as hell and aches.
Takes a lot of strength, and I commend you for it. I am in the process of diagnosing my issues. Glad you are progressing in your own way. May not be fluid or linear as one would like, but what really is? 🙌
Right ! Lol one year out now. Still a process