Living with PN and teenagers

Here is a place for social chats with special attention to support and non medical discussions. We need a place to chill out, where we can distract from our pain and enjoy lighter moments, share a joke or funny moment with others.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Living with PN and teenagers

Post by Karyn »

abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...
Hi Abmia22 - Who are you directing this statement to? I agree 25 years old is a very difficult age to be going through this, but please don't give up hope. Personally, I don't think there's ANY age that's better equipped to deal with this. Were you aware we have a small child suffering from this condition (please see "MOMS" posts - Journey of a Child)? There IS a chance to have a normal life again. It won't come easy, but it is possible.
Wishing the best for you,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Living with PN and teenagers

Post by HerMajesty »

abmia22,
My pelvic pain syndrome started at age 14 and I have a husband and children, probably because I never said I "probably couldn't".
Several months ago my husband attending the wedding of a young man who was in the end stages of Muscular Dystrophy. He married a healthy young woman...there are women in this world, in fact many more than you would think, who will not turn their nose up at a man because he has health problems.
You are limited by your disablity inasmuch as you allow yourself to be defined by it. While I have to agree with Karyn in saying that there is a chance to have a normal life again, I also think it is possible to have a life that is never "normal" and is still excellent.

Lernica, Congrats!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Living with PN and teenagers

Post by Karyn »

HerMajesty wrote:You are limited by your disablity inasmuch as you allow yourself to be defined by it. While I have to agree with Karyn in saying that there is a chance to have a normal life again, I also think it is possible to have a life that is never "normal" and is still excellent.
Very well said, HM! :D
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:
Contact A's Mommy

Re: Living with PN and teenagers

Post by A's Mommy »

Give my congrats to your daughter, Lernica. Praying her success over these next difficult long years.

As M
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Living with PN and teenagers

Post by pomegranate »

abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...
I think one can have an extraordinary life, even when one has a disability.

...says this 25 year old.

I refuse to be defined by my limitations.

Plus, medicine is constantly improving. I think there are answers yet to come!
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
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pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Living with PN and teenagers

Post by pomegranate »

Lernica wrote:My eldest got into medical school! She'll be starting at a very reputable Ontario school in the fall. I'm so proud and happy for her. She worked very very hard for it over the past four years in a difficult B. Sc. program.

So there's at least one more PN-aware doctor coming up in the ranks!
This is fantastic news!! Congrats to your daughter.

My husband graduates PA school this fall. So there's another PN-aware provider coming up :D
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Living with PN and teenagers

Post by Lernica »

Thank you for your congrats, everyone (like I deserve it-- NOT!) ;) I am so proud of my daughter and yet I am not looking forward to her moving away from home and my losing touch with her as she becomes immersed in her medical studies. She has lived at home all her 21 years and has been wonderful support and companionship for me, especially the last six months that I've been off work. From a very early age she has been a self-starter, a very low-maintenance kid -- especially when compared to the others (see the above :D ). I will really miss her independent and hard-working spirit and her enthusiasm to tackle everything that comes her way. :(
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Living with PN and teenagers

Post by HerMajesty »

pomegranate wrote:
abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...
I think one can have an extraordinary life, even when one has a disability.

...says this 25 year old.

I refuse to be defined by my limitations.

Plus, medicine is constantly improving. I think there are answers yet to come!

WORD.
And yes medicine in the area of pelvic pain is improving quickly. I compare the "care" I got when my pelvic pain started in the 1980's, to what is being done now: it's like night and day. I did a research paper in college on "care" of women with Interstitial cystitis and found a published case study from the 1950's where a woman did not respond to pelvic pain treatment and so she was given a transorbital lobotomy. That's "published peer review literature" for ya! After that, the care I got in the 1980's didn't seem so bad after all! But really, when you look at it over a timeline, there have been huge improvements in the field of pelvic pain and you young people will be cured by the time you're my age (turning 40 next month).
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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