Question about post op pain

[Greengiraffe]

Hi all,
I had laparoscopic nerve detrapment surgery with Dr Lemos in Toronto in march of this year. As an aside, he was great to work with and so was his medical and surgical team. He is one of the world’s experts on laparoscopic nerve detrapment and has high success rates. He also looks at the sacral areas where the nerve originates as well. I was super impressed.

I had S 2,3,and 4 entrapped in my sacrum as well as entrapment further down the pudendal nerve, basically multiple sites that were entrapped. They’d been entrapped approximately 2.5-3 years.

Prior to surgery I was unable to walk further than a few hundred feet without severe debilitating pain, and I couldn’t sit. I also had severe vulvodynia, rectal pain and PGAD. I basically went from very athletic, working full time to living on my bed and couch.

The most effective thing for me preop were pudendal blocks, which would allow me much more function but I was still very disabled by it.
I’m coming up to 6 months postop now and my last nerve block has fully worn off. I can walk (!!!) about 3-4 km regularly now and my sitting has improved too. No more PGAD!

However, my pain in my inner butt cheek, my labia and near my rectum is really bad. It’s a sharp, burny pain that the meds don’t help too much. They told me to expect a postop nerve flare that could last a very long time. I’m unable to work still as the pain is too much and I can’t sit for long.

Could anyone who had surgery shed light on how long their pain flare lasted and signs it was subsiding?
That area feels like I’m sitting on a stove burner, and feels almost exactly the same as pre-op. Because the sacral pain and buttock pain has improved so much, I’m kind of worried this area won’t improve?
Or am I being too impatient?
Thankyou for any advice!

[jaxi123]

Recovery can be a complete roller coaster. Unfortunately for me there was no relief from 2 decompression surgeries.

[Violet M]

Hi Greengiraffe,

Your history sounds similar to mine - all the exercise and going from being athletic to being on the couch. It took about 9 months after surgery before my pain really started to subside. I couldn't really sit much until 18 months post-op. I don't remember the exact signs I was improving because it's been so long ago but I remember I was able to stop taking narcotics at around 9 months.

Glad to hear some of your symptoms have improved and I hope you will continue to improve.

Violet

[seagreen]

Hi there GreenGirafee and Violet!
I was very interested to read your stories Greengirafee and Violet M as they share similarities to my own.
I had laparoscopic nerve decompression surgery earlier this year with a surgeon with an excellent reputation who has trained to the highest level in Neuropelveology.
I have been having pelvic pain for 2-3 years prior with a sharp worsening in symptoms 6 months prior to surgery. I had very severe pain that radiated down my leg.
Surgeon found potentially multiple sites of vascular entrapment.
Post surgery i have had intense pain and am on lyrica and pain meds.
I have intense burning pain in my inner butt cheek, labia and rectum also that is not helped much by any meds - this has also concerned me as i feel like i have had some improvement in other areas. i was also told to expect a post op nerve pain flare that could last for some time. I never expected it to last this long though. I am also unable to sit very long and unable to study/work.
Really hoping we both get some relief soon !
I think we will as it seems recovery from this surgery is a marathon and i was told to expect pain to get worse before it improves.
Violet thank you for sharing your story and that it was around 9 months for significant improvement in pain and to be able to stop narcotics - this really made me feel better as the pain for me has still been very bad.
I am about to go in for my 2nd ketamine infusion and possibly having my first nerve block / pulsed frequency modulation.
Progress is so slow its hard to see the big picture and when it seems like its going /or gone backwards its been very hard on my morale. I am trying to keep the big picture in my mind and remember its just getting through it.
I sometimes think i'm not doing enough physio but the pain level has made it very challenging to do so. I am hoping soon to start doing more.

[Violet M]

Hi Seagreen,

When the pain got really bad for me after surgery and I thought I was going to go crazy I would sit in warm/hot water on a donut cushion and alternate back and forth between hot and cold water. I put 2 shallow plastic boxes (one with hot and one with cold water) on top of 2 plastic crates in my bathtub so I could move back and forth between them and keep adding hot water to one and ice to the other. I sat in the hot water 2 minutes and then in the ice 30 seconds, alternating back and forth 4 times. Hydrotherapy like this is known to be very healing but it also calmed the pain temporarily.

Regarding physiotherapy -- I did not even start walking much until 5 months after surgery and then I started walking 5 minutes a day outside at first. I didn't start physiotherapy until about a year after surgery because it was just too painful. So, my rule was not to do anything that increased the pain. The goal was to let it heal. There are some gliding exercises that doctor Antolak used to recommend to his post-op patients. https://www.pudendalhope.info/approved- ... gExercises
So please take it easy and don't push yourself too hard, OK?

Violet