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pelvic pain and multiple sclerosis

Halidon profile image
8 Replies

I would like to talk about my Levitor Ani Syndrome rectonal pain whether anyone else has experienced this problem and what could I do about coping with the pain

8 Replies
Konagirl60 profile image
Konagirl60

Hello. I was diagnosed incorrectly with having levator ani syndrome. I actually had pudendal nerve entrapment which affected my rectum and perineum.

My rectal injury started off as a ‘tingling’ sensation after long drives or busy days lifting heavy boxes. It always subsided and happened once in a blue moon. At that time I could still sit and I had no rectal pain.

I saw my doctor for an annual and told her about this. She sent me for a colonoscopy because I was turning 50 years old 6 months later.

The colonoscopy found nothing wrong but the gastroenterologist concluded it was levator ani. I retrieved the report and was shocked to see my GP told him she suspected tenesmus! I never told her anything about having trouble with having BM’s.

Ten months after that colonoscopy I could no longer sit. PT made it worsen and I couldn’t lie down either. That PT did say my pudendal nerve was the culprit.

I was gas lighted by my GP and every specialist she sent me to. The MRI I had was done incorrectly omitting S2, S3 and S4 of my sacrum as they scanned S1 and up. CT scan of pelvis was normal to.

From thereafter I was treated as having a mental health problem and all I was given were meds of which all were ineffective. They left me sedated.

A pain specialist did two nerve blocks incorrectly with me in the lithotomy position. She used no guidance and she injected 1. Inside wall of my vagina and 2. My right labia majora with anaesthetic and no cortisone. Hence they failed and I was incorrectly diagnosed with vulvodynia.

My pain was in my rectum. It was not in my vagina. It burned endlessly.

I had to take a small cooler with me everywhere I went that was filled with gel ice packs as I HAD TO sit on ice all day. Eventually I stood up all day on orthopaedic shoes because my legs needed the support.

Things got worse and I started loosing whole bowel movements in my bath, in my underwear and pyjamas!

My doctor said I wasn’t wiping properly after using the toilet!

She had NO clue what happened when I woke up every night and urinated pain free BUT WHEN I WENT TO LAY BACK DOWN ON MY MATTRESS MY RECTUM FELT LIKE IT WAS ON AN OVEN RANGE BURNER being burned OR a red hot poker was branding my rectum.🔥🔥🔥🔥

Long story short, I did all the work and study, I found a neurologist in Toronto who referred me to a pudendal nerve expert in Minnesota and was eventually properly diagnosed there in September 2009. I’d had a properly done CT-guided nerve block and I’d say pain free for 12 hours. He injected into my buttock where the nerve lies with both anesthetic and 35 mg steroid.

I returned to my home in Canada. I saw my GP and she yelled at me that she didn’t believe the US doctor.

I eventually had to hire a registered nurse consultant as the continued neglect was leaving me near death from severe sleep deprivation and lack of pain control. I lost cognitive function.

The nurse advocated for my getting decompression surgery. I got it 4 years too late in St Paul, Minnesota in November 2011, The burning pain was gone. 🙏🏻

Apparently, my pudendal nerve was compressed in three spots. It was a serious injury.

I’d been very very athletic. I was a ballerina for 12 years ( achieved teaching status ), I did gymnastics, I skied, I hiked and I had a job that required hip flexion movements of my body for 30 years . I raked 45 bags of leaves every year and I shovelled a 45 degree driveway of snow for 14 years after my divorce as I kept the family home.

Essentially, ligaments in my ischial spine had been overused and they had juxtaposed That led to the nerve becoming stuck on the ligaments and fascia. Surgery corrected this.

I’m lucky to be alive as I was neglected and given utterly incompetent care in Canada. I am 12 years post op and I’d say I’m 85% healed. I HAVE TO sit on a donut and I still require two meds at bedtime.

I pray you find the proper help from kind doctors. I was defamed, abused, mistreated and it’s been a nightmare. I no longer trust many doctors.

Halidon profile image
Halidon in reply to Konagirl60

thank you for all your information it has helped me to look further into my problem as I am well and truly sick of being in pain every day .I shall let you know how I progress with using your information 👍👍👍

Konagirl60 profile image
Konagirl60 in reply to Halidon

Good luck. Keep me posted.

SouthernSally profile image
SouthernSally in reply to Konagirl60

I don't know how I missed this. You're not "wiping properly?" That GP should be reported! GPs are often only generalists who have little more to offer than check your blood pressure and run the usual blood tests. Rather than admitting she didn't know and couldn't help you, she blamed it on you. That's despicable. Did the pudendal specialist use the nerve block to diagnose your pudendal nerve or did she do it another way?

You've been through so much trauma with pain and the way you were treated. Im so glad the surgery worked for you.

Konagirl60 profile image
Konagirl60 in reply to SouthernSally

Yes, the American specialist did a proper fluoroscopy guided transgluteal nerve block using 35 mg steroid and anesthesia. I sat pain free for 12 hours for the first time in 20 months.

The nerve blocked proved it was my pudendal nerve.

The doctors where I lived didn’t believe the US doctor nor did they follow through with his treatment plan. They just left me to die and taking 6 meds that just sedated me!

I AM recovering from severe trauma. I am lucky to be alive.

SouthernSally profile image
SouthernSally in reply to Konagirl60

I’m so happy for you that you came out on the other side of this.

Can you tell me how many visits it took for you to get the diagnosis in Minnesota and the name of the doctor/practice? If names aren’t allowed please PM me. Thank you.

Konagirl60 profile image
Konagirl60 in reply to SouthernSally

It took one visit.

My doctor retired.

Inpainus profile image
Inpainus

I have pelvic pain too and the only thing that has given me relief is Botox injections in the rectum. They give relief for about 4 months. I get them done in Phoenix. The newest plan is to get physical therapy during those four months and get a series aid 5-7 injections. They want to solve the problem with the muscles not just short term relief. But doctors are leaving the practice lately so it is hard to schedule that many injections during 3-4 x a year 🙄

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