Hope this recent coverage of this subject in papers and TV in Australia is picked up and reported in the UK.
Rosemary x
The agony when things go wrong down there
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Anne smith
- Posts: 72
- Joined: Wed Feb 08, 2012 12:44 pm
Re: The agony when things go wrong down there
Excellent article!
I am lucky(so far) that my pain tends to be more of the rectal kind, although I have had minor burning , and sporadic cystitis. It was very interesting to me that it sugested a link between chronic thrush and the tensing of the pelvic floor.
I suffered for many years! We are a long way off getting a good understanding from our g.ps but articles like these can only help
Anne smith
I am lucky(so far) that my pain tends to be more of the rectal kind, although I have had minor burning , and sporadic cystitis. It was very interesting to me that it sugested a link between chronic thrush and the tensing of the pelvic floor.
I suffered for many years! We are a long way off getting a good understanding from our g.ps but articles like these can only help
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Re: The agony when things go wrong down there
Here's a link that shouldn't expire: http://tinyurl.com/a7g3d3v
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: The agony when things go wrong down there
Hi Sunil
I admire you for stepping forward to be interviewed - i hope it is taken up as more awareness of a problem is a help to anyone be it men or women.
Rosemary x
I admire you for stepping forward to be interviewed - i hope it is taken up as more awareness of a problem is a help to anyone be it men or women.
Rosemary x
Re: The agony when things go wrong down there
I agree, Sunil. Such as Rosemary, I also admire you for stepping forward and stating your case. So many more people truly do need to realize this isn't a "female problem".sunil wrote:Be that health wise, "race" - there is no such things as race we are all human beings, gender, etc.
Best of regards,
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.
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.
Re: The agony when things go wrong down there
Hi Sunil
I think it is the nature of any forum that you get a core of people who post regularly and you could say form a group.
I have seen this work to the detriment of others on another forum which was not good but i don't sense that on here.
Being a new member here i have received nothing but caring replies from both females and males.
Take care now.
Rosemary x
I think it is the nature of any forum that you get a core of people who post regularly and you could say form a group.
I have seen this work to the detriment of others on another forum which was not good but i don't sense that on here.
Being a new member here i have received nothing but caring replies from both females and males.
Take care now.
Rosemary x
Re: The agony when things go wrong down there
Hi Sunil,
I've got to agree with Rosemary again. Personally, I don't see a division of male vs. female here. However, I do see it more in the medical and non-chronic pain community. One of our goals in this organization is to create awareness about PNE and it's associated disorders, and I think we've been clear about how these conditions are non-discriminate of gender, age, race, social status, etc ....
I was recently awarded Disability Retirement. Part of the process was for an Investigator to come to my home to interview me. I asked for a copy of his report after I was granted.
The very first line reads: "Applicant has host of FEMALE PROBLEMS, starting back in 2008 when she had a hysterectomy". Although I got a good laugh out of it, I couldn't help but feel a bit insulted, too. As we know here, I'm not disabled due to female problems. Something that's more often than not given credibility to. So, there is a flip side.
It makes me feel sad that you would feel left out or separate from this community. I would like to work this out and come to some kind of constructive resolution with the hope you may feel like the respected, valuable, and cared about person that you truly are.
I wish less stress and anxiety for you as the week progresses. You're in my thoughts.
Warm regards,
Karyn
I've got to agree with Rosemary again. Personally, I don't see a division of male vs. female here. However, I do see it more in the medical and non-chronic pain community. One of our goals in this organization is to create awareness about PNE and it's associated disorders, and I think we've been clear about how these conditions are non-discriminate of gender, age, race, social status, etc ....
I was recently awarded Disability Retirement. Part of the process was for an Investigator to come to my home to interview me. I asked for a copy of his report after I was granted.
The very first line reads: "Applicant has host of FEMALE PROBLEMS, starting back in 2008 when she had a hysterectomy". Although I got a good laugh out of it, I couldn't help but feel a bit insulted, too. As we know here, I'm not disabled due to female problems. Something that's more often than not given credibility to. So, there is a flip side.
Well, I think this is true to an extent. But again, I don't think it's a male vs. female thing. It's natural to gravitate to and form bonds with certain people who have specific commonalities with you.sunil wrote:The problem is that many females in here seem to have a little group going and it appears as if we live in two different worlds.
It makes me feel sad that you would feel left out or separate from this community. I would like to work this out and come to some kind of constructive resolution with the hope you may feel like the respected, valuable, and cared about person that you truly are.
I wish less stress and anxiety for you as the week progresses. You're in my thoughts.
Warm regards,
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.
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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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: The agony when things go wrong down there
it is well known that typically women are good communicators Sunil, but so are you.
You can be a honorary member of the women's PN 'group' here
if it existed, or we can just see ourselves as people who need help but can offer it too (as we often do).
I really think we are all a great team here,with different points of view, opinions, history and knowledge to offer. I would never want anyone to feel marginalised, for whatever reason.
Take care,
Helen
You can be a honorary member of the women's PN 'group' here
if it existed, or we can just see ourselves as people who need help but can offer it too (as we often do).I really think we are all a great team here,with different points of view, opinions, history and knowledge to offer. I would never want anyone to feel marginalised, for whatever reason.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.