POST-OP UPDATE!

[barb21949]

Had my surgery on December 15, 2020.

I am doing better. I am REALLY hopeful and I am praying that I continue to see more progress.

I saw my surgeon, Dr. Andrew Elkwood last week and he is happy with my progress so far and he told me to expect another 6 months to a year of HOPEFULLY continued progress.

So 4 months post op I am certainly not pain free but I am feeling less intensity in my pain some days, maybe 25%? Any decrease is improvement!!!!

Pre-op, morning was always the best time of day for me and since the surgery it’s a little better. I almost feel normal in the mornings. I am still working on knowing my limits. I still have that strong "something there sensation" 24/7.

If I am home, reclining or laying down with only a little walking or standing or sitting, maybe some basic household chores, etc...I can have a decent day without unrelenting pain levels which is a welcome improvement. Having said that pain is still there and I still need to avoid sitting as much as possible. I long for the day I can JUST SIT again without thinking twice about it.

For me, driving and walking even standing were always big issues as as bad as the butt pain was my vuvlar/labia pain was most prominent. Sadly I am still struggling in these areas. Driving remains a big trigger since my pain is right sided and pedal movement is irritating. There really isn’t anything I can do even laying down that’s not painful but I do feel a decrease. I used to come home crying after my long commute and a day at work and would lay down all night and all weekend with ice packs and heating pads. It was unbearable and just cruel to expect anyone to live like that! I am not bowing to the ice packs and heating pads Gods as much anymore which I am excited for BUT its contingent on activity level as the more I do, the more pain I feel. Some days are worse than others. I still can not last long enough to get through your average day without flaring.

Intimacy is possible again (with caution and patience) but it’s not without discomfort during and suffering a flare afterwards.

Overall...I am definitely seeing improvement and hopeful to see more improvement in time.

WORK ISSUES:
I work a full time administration job.
5 days a week. One hour a commute one way without traffic (a little less now with Covid).
40-50hr work week. I have a stand up desk but standing is not a pain reliever for me.
I was out on medical leave for 3 months. Upon my return my job has reduced me to part time status due to my doctors recommending and my requesting remote work as they will not let me have the benefit of full time status working from home which makes no sense to me as we were doing that the first few months of Covid.
Anwway...they told me in order for me to go back to full time I need to report on site at least 2 days a week to start with a gradual increase to 5 days on-site.

Since being home on leave and now working remote I am able to manage my pain as needed. I can lay down when needed, stand, ice up, heat up, change positions, etc...in my own environment that I can control I am managing myself well. I have not driven longer than 10-15 minutes at a time since the surgery. My employer said they would try to accommodate me on a "temporary basis" as long as it does not cause them a hardship.

I am VERY concerned that rushing back to 8-10hr day of sitting and standing and that commute too soon (or even at all) may hinder or halt any progress I may see from the surgery. My husband is so grateful for the improvement I am seeing not only physically but in my personality that he does NOT want me chancing a setback.

So I am struggling with my work situation and what is best going forward. I have gotten through the past 6yrs with this condition by grinning and baring. I never have said I CAN'T DO THIS OR THAT as I CAN drive, sit, walk, stand, etc....I can do it all...but its not without consequence.

With pudendal nerve...when do you know to stop the grin and bare?
If you have to do that to get through the day are you really living a quality life?
If you start to feel better could you/should you go back to your life pre-op or does that mean BE GRATEFUL AND BE KIND TO YOUR BODY AND DON'T PUSH YOUR LIMITS OR YOUR LUCK?
I struggle with this a lot.
Is that giving in or is that just acceptance?

[aussie_pain]

,

[jaxi123]

I would not go back to work. I did and it was the worst mistake ever

[barb21949]

Hi
From month 3-4 did you notice any difference with nerve sensations like more pain or jolts?

For the first month or two I had ALOT of shooting pains and pins and needles sensations but it has died down. They can come out of nowhere! I was told to expect this especially during the first 6 months.

[alanforgood]

Good to know you are doing better. How is your recovery so far? Did you do the transischiorectal fossa approach? I am going to see Dr.Elkwood soon, but very hesitant to use which method for the surgery.

[barb21949]

18 months post op I am better but still have limitations:

- driving long distances (longer than 20 minutes) causes alot of pain
- can tolerate about 2-4 of daily life activities without laying down in-between
- with laying down I can tolerate more in spurts
- I can have days of low level pain days which was NEVER possible before
- BUT still prone to flares that can be unpredictable in duration and scale so I have to still be mindul and not do too much in a day or too many days in a row
- been working remote since the surgery which was a big help to elimate a daily commute and sitting/standing for 8-10 hours a day
-lifestyle changes has definitely helped
- my pain has gone from piercing and stabbing to more achy and "heavy" feeling

having said all this I will take this over how I was before the surgery. To some the above might sound terrible but compared to how I was...its much improvement

In addition to the surgery I also had another nerve block injection, sclerotherapy of the pelvic and at the end of this month Dr Elwood is doing another procedure to remove a neuroma that developed on my vaginal wall and could be contributing to ongoing pain

[jaxi123]

How are you now doing?