Next stop Mayo Clinic?

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Re: Next stop Mayo Clinic?

Postby Alyssa » 28 Sep 2014, 10:54

I too have been doing pelvic floor physical therapy but it did not help.. I had Botox injected on the pelvic floor muscles 3 weeks ago and the pain has decreased... I've started biofeedback last week too and tried acupuncture on Friday; I'm trying different approaches to see if any if these treatments end the pain completely.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Re: Next stop Mayo Clinic?

Postby Alyssa » 05 Oct 2014, 14:13

SSK & jsingh,

How are you doing?
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Re: Next stop Mayo Clinic?

Postby Jsingh » 05 Oct 2014, 17:04

Hi,...nothing really to report....there is no real change...this issue has become a part of my life and am dealing with it is best as I can...How are you doing?..I tried some of the excercises that you mentioned but no help...
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Re: Next stop Mayo Clinic?

Postby Alyssa » 05 Oct 2014, 21:11

I'm hanging in there too... I get depressed by just thinking about having to live the rest of my life like this and I don't want that! How does something like this happen? I get really emotional some days because I reminisce my old butt with absolutely no pain!

Botox to the pelvic floor helped decrease pain during bowel movements; now I still have burning pain when I sit on my rectum for long periods; then I have this prickly irritation when I walk... Anal exams are still painful and my anus is still tender to the touch.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female

Re: Next stop Mayo Clinic?

Postby SSK » 06 Oct 2014, 08:26

Like JSingh, nothing new to report. My pain levels have decreased and the frequency of days when I'd be writhing in pain and reaching for painkillers has also decreased. At this stage, I would say I'm in moderate pain 7-10 days a month that usually co-incide with my period but not always. I have started doing some core workout at home watching YouTube videos. I just feel I need to strengthen myself overall to fight this because thelast 2 years have wreaked havoc on my general health.
Good luck guys! We need to stay positive to beat this.
SSK
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Re: Next stop Mayo Clinic?

Postby Alyssa » 06 Oct 2014, 21:15

Ssk,

I wish I could stay positive... I definitely want to beat this! The question is what is it?
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female

Re: Next stop Mayo Clinic?

Postby SSK » 07 Oct 2014, 08:21

I know what you mean. And I feel that there is a strong possibility that I will have to live with this condition forever. Forever is also a really long time but it feels like no matter how hard I try, I seem to have no control over my pain. It's like I didn't even know the triggers and so I can't prevent them. I used to be not okay with this possibility of never being pain-free again and that caused me a lot of mental and emotional distress. I was referred to a psychologist. That's when I realized I can't be like this. How much ever I hate it, I am forced to accept that some days will be good and some not so. I can't be a carefree 28 year old anymore and the loom of pain will always hang over my head. I'm not sure I have accepted it 100% because I still have days when I break down but then what can I do? I need to keep my head down, work, eat right, exercise and if i still can't be back to normal, I really have no control over it. It's a mystery and a very unfortunate one even for the doctors.
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Re: Next stop Mayo Clinic?

Postby Alyssa » 07 Oct 2014, 22:29

I too break down almost everyday... On the way home from work... Some days I wish that I would not wake up; it's sad because I have two small children and a husband that loves me but there are days I am selfish and wish to not be suffering on this earth.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
VIP
 
Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female

Re: Next stop Mayo Clinic?

Postby SSK » 09 Apr 2015, 18:05

Guys, I am here to give a quick update. There is not a single day that I take for granted now because my pain is gone and this is the biggest gift life has given me. I never thought I will get to see this day. I have lived with the pain for 2 years and for the past 6-7 months I am doing fine. No pain, no agony that came with it. Life has mysterious ways of working things out. I continue to do pilates exercises at home to strengthen myself (Youtube "Fitness Blender" videos").
I stayed away because I didnt want to jinx myself but the thought has been gnawing at me for months. I feel it is my responsibility to come back and give an update for anyone out there who is looking out for hope and desperate for answers. Please don't give up. I wish you all luck and good health forever.
SSK
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Re: Next stop Mayo Clinic?

Postby Alyssa » 09 Apr 2015, 23:15

Ssk,

I'm so Happy for you! And thank you for coming back to give us sufferers hope that one day we will be out of pain!!! Is that all you did and you became pain free? How often did you do the exercises? Did you do it on your own or with help of a pt.

I hope that you stick around and be available for support and advice...
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
VIP
 
Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female


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