Hello,
I’m one year post-op hysterectomy
I have a lot of PN symptoms but it happens when I stand up. Sitting is not so bad, laying down relieves it.
Is this familiar to anyone else?? It’s keeping me in denial.
Help?
Stuck in the Denial Stage
Re: Stuck in the Denial Stage
Hi Carnation,
That is familiar to me. Sitting does not increase my pain (in fact, sitting is sometimes better than standing), and lying down helps it a bit. I think lying down helps because I'm relaxing the ligaments. Hibner said that some people with a small pelvis might get relief when they sit because it opens up the ligaments a bit. I had decompression surgery six years ago, and my pain gradually declined after that. But I still have flares and this pattern---with sitting not being a problem--still holds.
Have you seen a doctor about this? What treatments have you tried?
April
That is familiar to me. Sitting does not increase my pain (in fact, sitting is sometimes better than standing), and lying down helps it a bit. I think lying down helps because I'm relaxing the ligaments. Hibner said that some people with a small pelvis might get relief when they sit because it opens up the ligaments a bit. I had decompression surgery six years ago, and my pain gradually declined after that. But I still have flares and this pattern---with sitting not being a problem--still holds.
Have you seen a doctor about this? What treatments have you tried?
April
Re: Stuck in the Denial Stage
Thanks for you help April,
I’m on doctor #6 right now who thinks it’s PN
I don’t do well on meds so
I’ll be starting PT this month
Not being able to stand up for longer than a few minutes is extremely disabling
I almost feel normal when I’m laying down What a life!
So happy to see that you were helped
It gives me hope
Thanks
I’m on doctor #6 right now who thinks it’s PN
I don’t do well on meds so
I’ll be starting PT this month
Not being able to stand up for longer than a few minutes is extremely disabling
I almost feel normal when I’m laying down What a life!
So happy to see that you were helped
It gives me hope
Thanks
Re: Stuck in the Denial Stage
Yeah, most of us have cycled through a lot of doctors, but 6 in a year is a lot even in these circles. Are they urogynecologists? Yes, it is hard to be on meds. I was very glad when I got off of them. Have you tried ice and/or heat to deal with the pain? did pt (only external) for years and it did relax my muscles, and I learned a lot from my pt, but it didn't create any long-term benefit I think because my nerve was entrapped. But some people do benefit from it. Let us now how your pt appointments go.
April
April
Re: Stuck in the Denial Stage
I started PT and on the 4th visit I was discharged because none of the exercises helped.
So I’m still using ice on and off all day
I think I’ll maybe try suppositories of some kind to see if it helps with muscle spasms
I’m too afraid of doing anything else right now
So I’m still using ice on and off all day
I think I’ll maybe try suppositories of some kind to see if it helps with muscle spasms
I’m too afraid of doing anything else right now
Re: Stuck in the Denial Stage
Hi Carnation,
So sorry the pt didn't help. I'm surprised you were given exercises. They weren't kegel exercises, were they? They can increase pain. PT for pn usually aimed at calming down the muscles that might be creating or exacerbating the pain.
Yes, ice is great. I used to put frozen condoms on a pad in my underwear, so the ice would stay in place and numb the area, and so I could have ice when I was away from home. (I had about 15 in rotation in the freezer.) I eventually got severe panniculitis, but around that time, I discovered that high heat (vinyl heating pad on the highest setting) worked just about as well and was safer for the skin. I eventually starting wearing biking shorts with the pelvic area cut out when I used the heating pad, so that the heat didn't harm the skin on my legs. The big drawback, though, is you can only use that at home. Anyway, those are the non-medicinal strategies that saved me (because my meds were never enough to eliminate the pain).
You said you had a lot of the symptoms, but it sounds like you haven't gotten a formal diagnosis? Has you considered seeing a pn surgeon to get their take on your symptoms?
April
So sorry the pt didn't help. I'm surprised you were given exercises. They weren't kegel exercises, were they? They can increase pain. PT for pn usually aimed at calming down the muscles that might be creating or exacerbating the pain.
Yes, ice is great. I used to put frozen condoms on a pad in my underwear, so the ice would stay in place and numb the area, and so I could have ice when I was away from home. (I had about 15 in rotation in the freezer.) I eventually got severe panniculitis, but around that time, I discovered that high heat (vinyl heating pad on the highest setting) worked just about as well and was safer for the skin. I eventually starting wearing biking shorts with the pelvic area cut out when I used the heating pad, so that the heat didn't harm the skin on my legs. The big drawback, though, is you can only use that at home. Anyway, those are the non-medicinal strategies that saved me (because my meds were never enough to eliminate the pain).
You said you had a lot of the symptoms, but it sounds like you haven't gotten a formal diagnosis? Has you considered seeing a pn surgeon to get their take on your symptoms?
April
Re: Stuck in the Denial Stage
Hello April,
I had to try PT just to see if it helped. I wasn’t doing Kegels, just relaxation breathing and gentle stretching of hips and legs but it aggravated me. Doing anything or nothing at all aggravates me. I had an internal exam at PT which confirmed for me that the pudendal nerve is exactly what I’m feeling. After that I didn’t want anything else internal. Nauseating.
I’m trying heat now and Valium/Baclofen suppositories
I don’t like being on meds because they don’t help and I’m starting to have neuro issues with bowel movements like losing the sensation to go and my whole lower abdomen is irritated and itchy when anything touches it.
All I can say is thank God I have a supportive husband to help me through
I had to try PT just to see if it helped. I wasn’t doing Kegels, just relaxation breathing and gentle stretching of hips and legs but it aggravated me. Doing anything or nothing at all aggravates me. I had an internal exam at PT which confirmed for me that the pudendal nerve is exactly what I’m feeling. After that I didn’t want anything else internal. Nauseating.
I’m trying heat now and Valium/Baclofen suppositories
I don’t like being on meds because they don’t help and I’m starting to have neuro issues with bowel movements like losing the sensation to go and my whole lower abdomen is irritated and itchy when anything touches it.
All I can say is thank God I have a supportive husband to help me through
Re: Stuck in the Denial Stage
Hi Carnation,
Sorry to hear PT made you worse. Same thing happened to me before having PNE surgery. I had to quit it - especially internal PT.
You said you had a hysterectomy a year ago. Did the symptoms start right after surgery?
You mentioned you are getting loss of sensation with BM. Have you had recent lumbosacral MRI? If not, loss of sensation can potentially need urgent treatment so you need to be sure there isn’t something going on in the lumbosacral and cauda equina area.
Violet
Sorry to hear PT made you worse. Same thing happened to me before having PNE surgery. I had to quit it - especially internal PT.
You said you had a hysterectomy a year ago. Did the symptoms start right after surgery?
You mentioned you are getting loss of sensation with BM. Have you had recent lumbosacral MRI? If not, loss of sensation can potentially need urgent treatment so you need to be sure there isn’t something going on in the lumbosacral and cauda equina area.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Stuck in the Denial Stage
Hello Violet,
This started gradually a few weeks after surgery.
It was vaginal/bladder burning pain, then it was electrical, it feels like my vagina is actually bruised.
I had the lumbar and sacrum MRI but the report says nothing serious
My abdomen is involved now with heaviness, bloating, cramping, mostly menstrual-like cramps which is weird to me because I don’t have a uterus
And bowels are sluggish so a lot of days I won’t have an urge to go and that makes it so much worse.
I keep thinking maybe scar tissue is involved but who knows? Is there really any way to know?
This started gradually a few weeks after surgery.
It was vaginal/bladder burning pain, then it was electrical, it feels like my vagina is actually bruised.
I had the lumbar and sacrum MRI but the report says nothing serious
My abdomen is involved now with heaviness, bloating, cramping, mostly menstrual-like cramps which is weird to me because I don’t have a uterus
And bowels are sluggish so a lot of days I won’t have an urge to go and that makes it so much worse.
I keep thinking maybe scar tissue is involved but who knows? Is there really any way to know?
Re: Stuck in the Denial Stage
Hi Carnation,
I'm glad the internal exam gave you clarity on this. It's nice to know what's going on. Like Violet I also could not do internal pt. You mentioned the burning and bruising sensation. I definitely had both and still sometimes do, especially the burning, although it is today far less often and less extreme. Glad the heat and suppositories are working. As Violet said, numbness in the sitting area can be serious, so it's good that you had an MRI that didn't show anything serious. Do the doctors think the problems started with the surgery?
April
I'm glad the internal exam gave you clarity on this. It's nice to know what's going on. Like Violet I also could not do internal pt. You mentioned the burning and bruising sensation. I definitely had both and still sometimes do, especially the burning, although it is today far less often and less extreme. Glad the heat and suppositories are working. As Violet said, numbness in the sitting area can be serious, so it's good that you had an MRI that didn't show anything serious. Do the doctors think the problems started with the surgery?
April