Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Hi everyone, I joined this list a few weeks ago, although I've only just managed to get the courage to speak up. I'm 21, live in Australia, and have had vulvar vestibulitis for about 2 years now, but I was only diagnosed 6 months ago. When I first started experiencing pain during intercourse I put it down to me not being interested enough, until it started happening every single time. I had a really hard time coming to terms with the pain and use to always think it was in my head, so I've spent most of the past 2 years very depressed. Anyway, to cut a long story short, my doctor (luckily my local GP and the first and only doctor I've approached with this) diagnosed me straight away, claiming she'd treated a lot of patients with this condition. I was given a prescription for egocort cream and told to apply it once a day at night time, I was also told to avoid chemicals, tampons, anything else that irritates me and to use a lot of lubricant during sex. MY doctor also claimed I developed this condition from the HPV virus (came back with a high grade abnormal pap smear when the pain started). I was just wondering if anyone else has been through the same thing or been told there's a link? Also I was informed switing the birth control pills I'm using will not help at all (taking levlen 30 at the moment). I'm starting to wonder how much truth there is to that. I use to have an extreme fear of sex (and chairs actually), but with my current boyfriend we've worked on that and I seem to be experiencing little or no pain at the beginning of sex now (this does vary depending on the time of the month). Mind you we have to go slowly and be gentle, but it's at least an improvement, although it still hurts like hell to sit most of the time. I'm not sure why I'm experiencing less pain during intercourse now, and don't think it has anything to do with the egocort cream, although I'm not sure. Anyone else noticed any difference with this cream? Sorry for this being so long, I'm just after other people's opinions/experiences. I'm slowly learning to deal with this mentally, and hearing other peoples thoughts from this list has helped tremendously. Thanks. _________________________________________________________________ Hotmail now available on Australian mobile phones. Go to http://ninemsn.com.au/mobilecentral/hotmail_mobile.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2007 Report Share Posted July 28, 2007 Thanks for the welcome Joyce. Honestly, I don't think there is any good age for this - but yes, when I've looked around in my community for folks in similar situations I feel like a babe. It can be hard because so often my needs, interests and concerns are so different than my peers. We had a phase II trial of Pirfenidone in HPS patients at NIH in the late 90s with really great results, so I'm hoping for the same. When you look at our data, it seems as though the patients getting the drug did even better the earlier they were in their diagnosis. So, for our phase III trial (currently underway) they recruited patients that were healthier hoping the drug would be even more effective if given earlier. I squeaked into the trial just barely, so I'm hoping they're right. I go back for my one year stay at the end of August, so I guess we'll see then how the CT scans are looking. I think NIH is interested in HPS because we know we will develop PF - we know exactly which genes will cause it etc - so we give them a chance to study the development of PF before it's even detectable. It's funny, in school I hated science classes, but since my HPS diagnosis, now suddenly I"m extremely interested and follow the literature carefully. Who knew? > >> >> > Hello!> >> > My name is . I'm 34, live in Kansas and was diagnosed with PF a> > year ago in August. Before that I had lung inflammation and an> > asthma-like "thing" going on. My PF is due to Hermansky-Pudlak> Syndrome,> > a very rare genetic condition that causes albinism, a visual> impairment,> > a bleeding disorder, and depending on the gene mutation involved,> > Crohn's and pulmonary fibrosis. I have the whole party package! Grin!> My> > fibrosis is pretty mild right now, and my FVCs were good as of four> > months ago. I'm currently part of a clinical trial for Pirfenidone at> > the NIH.> >> > I'm also the director of outreach and vice president of the patient> > group for HPS. I wanted to join a few PF listservs in hopes that I> could> > learn more, both for myself as well as for the families I work with> all> > the time.> >> > I must confess up front that I may be a bit of a lurker - between my> job> > and HPS work, I tend to get a bit overwhelmed sometimes and just plain> > tired. Grin! But, I'll do my best to pop in and be active.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2007 Report Share Posted July 28, 2007 Thanks for the welcome Joyce. Honestly, I don't think there is any good age for this - but yes, when I've looked around in my community for folks in similar situations I feel like a babe. It can be hard because so often my needs, interests and concerns are so different than my peers. We had a phase II trial of Pirfenidone in HPS patients at NIH in the late 90s with really great results, so I'm hoping for the same. When you look at our data, it seems as though the patients getting the drug did even better the earlier they were in their diagnosis. So, for our phase III trial (currently underway) they recruited patients that were healthier hoping the drug would be even more effective if given earlier. I squeaked into the trial just barely, so I'm hoping they're right. I go back for my one year stay at the end of August, so I guess we'll see then how the CT scans are looking. I think NIH is interested in HPS because we know we will develop PF - we know exactly which genes will cause it etc - so we give them a chance to study the development of PF before it's even detectable. It's funny, in school I hated science classes, but since my HPS diagnosis, now suddenly I"m extremely interested and follow the literature carefully. Who knew? > >> >> > Hello!> >> > My name is . I'm 34, live in Kansas and was diagnosed with PF a> > year ago in August. Before that I had lung inflammation and an> > asthma-like "thing" going on. My PF is due to Hermansky-Pudlak> Syndrome,> > a very rare genetic condition that causes albinism, a visual> impairment,> > a bleeding disorder, and depending on the gene mutation involved,> > Crohn's and pulmonary fibrosis. I have the whole party package! Grin!> My> > fibrosis is pretty mild right now, and my FVCs were good as of four> > months ago. I'm currently part of a clinical trial for Pirfenidone at> > the NIH.> >> > I'm also the director of outreach and vice president of the patient> > group for HPS. I wanted to join a few PF listservs in hopes that I> could> > learn more, both for myself as well as for the families I work with> all> > the time.> >> > I must confess up front that I may be a bit of a lurker - between my> job> > and HPS work, I tend to get a bit overwhelmed sometimes and just plain> > tired. Grin! But, I'll do my best to pop in and be active.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2007 Report Share Posted July 28, 2007 , Like you, I have learned enough to get my MD. At least an RN. It is amazing how interested you can be when it pertains to you or your loved one. I have Mixed Connective Tissue disease including RA, Lupus, and Sjorgren's. They attack every part of the body, so at 62 there is almost nothing that I haven't had. My daughter said that everytime someone mentions an ailment or surgery...she says, yeah, my mom has had that! But, yours is new to me. And so interesting. Can you have this gene without the symptoms of HPS. I wander how many people with Idiopathic Pulmonary Fibrosis has a had a gene study. We have a few really young members such as yourself and it breaks my heart. It is hard enough on us old folks....but they have lives to live, jobs to work and children to raise. And, you are right....it just doesn't fit. Not a lot of understanding from your own peers. Take care and any research that you do that might help any of our group...share! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > >> > > Hello!> > >> > > My name is . I'm 34, live in Kansas and was diagnosed with PF> a> > > year ago in August. Before that I had lung inflammation and an> > > asthma-like "thing" going on. My PF is due to Hermansky-Pudlak> > Syndrome,> > > a very rare genetic condition that causes albinism, a visual> > impairment,> > > a bleeding disorder, and depending on the gene mutation involved,> > > Crohn's and pulmonary fibrosis. I have the whole party package!> Grin!> > My> > > fibrosis is pretty mild right now, and my FVCs were good as of four> > > months ago. I'm currently part of a clinical trial for Pirfenidone> at> > > the NIH.> > >> > > I'm also the director of outreach and vice president of the patient> > > group for HPS. I wanted to join a few PF listservs in hopes that I> > could> > > learn more, both for myself as well as for the families I work with> > all> > > the time.> > >> > > I must confess up front that I may be a bit of a lurker - between my> > job> > > and HPS work, I tend to get a bit overwhelmed sometimes and just> plain> > > tired. Grin! But, I'll do my best to pop in and be active.> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 , In my simple uneducated, nonprofessional mind is the question: When the lung doctors cannot find the cause for a patient's pulmonary fibrosis, instead of using the word "word" idiopathic why not do gene studies or even more research. It seems that not only do pulmonologists not agree on anything from diagnosing and treatment, not many of them really take the time to research probably cause. Maybe I am expecting too much from the medical community. I just wish one of them were as interested as each of us are!!! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > > > >> > > > > > >> > > > > > > Hello!> > > > > > >> > > > > > > My name is . I'm 34, live in Kansas and was diagnosed> > > with> > > > PF> > > > > a> > > > > > > year ago in August. Before that I had lung inflammation and> an> > > > > > > asthma-like "thing" going on. My PF is due to> Hermansky-Pudlak> > > > > > Syndrome,> > > > > > > a very rare genetic condition that causes albinism, a visual> > > > > > impairment,> > > > > > > a bleeding disorder, and depending on the gene mutation> > > involved,> > > > > > > Crohn's and pulmonary fibrosis. I have the whole party> > package!> > > > > Grin!> > > > > > My> > > > > > > fibrosis is pretty mild right now, and my FVCs were good as> of> > > > four> > > > > > > months ago. I'm currently part of a clinical trial for> > > Pirfenidone> > > > > at> > > > > > > the NIH.> > > > > > >> > > > > > > I'm also the director of outreach and vice president of the> > > > patient> > > > > > > group for HPS. I wanted to join a few PF listservs in hopes> > that> > > I> > > > > > could> > > > > > > learn more, both for myself as well as for the families I> work> > > > with> > > > > > all> > > > > > > the time.> > > > > > >> > > > > > > I must confess up front that I may be a bit of a lurker -> > > between> > > > my> > > > > > job> > > > > > > and HPS work, I tend to get a bit overwhelmed sometimes and> > just> > > > > plain> > > > > > > tired. Grin! But, I'll do my best to pop in and be active.> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 , In my simple uneducated, nonprofessional mind is the question: When the lung doctors cannot find the cause for a patient's pulmonary fibrosis, instead of using the word "word" idiopathic why not do gene studies or even more research. It seems that not only do pulmonologists not agree on anything from diagnosing and treatment, not many of them really take the time to research probably cause. Maybe I am expecting too much from the medical community. I just wish one of them were as interested as each of us are!!! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > > > >> > > > > > >> > > > > > > Hello!> > > > > > >> > > > > > > My name is . I'm 34, live in Kansas and was diagnosed> > > with> > > > PF> > > > > a> > > > > > > year ago in August. Before that I had lung inflammation and> an> > > > > > > asthma-like "thing" going on. My PF is due to> Hermansky-Pudlak> > > > > > Syndrome,> > > > > > > a very rare genetic condition that causes albinism, a visual> > > > > > impairment,> > > > > > > a bleeding disorder, and depending on the gene mutation> > > involved,> > > > > > > Crohn's and pulmonary fibrosis. I have the whole party> > package!> > > > > Grin!> > > > > > My> > > > > > > fibrosis is pretty mild right now, and my FVCs were good as> of> > > > four> > > > > > > months ago. I'm currently part of a clinical trial for> > > Pirfenidone> > > > > at> > > > > > > the NIH.> > > > > > >> > > > > > > I'm also the director of outreach and vice president of the> > > > patient> > > > > > > group for HPS. I wanted to join a few PF listservs in hopes> > that> > > I> > > > > > could> > > > > > > learn more, both for myself as well as for the families I> work> > > > with> > > > > > all> > > > > > > the time.> > > > > > >> > > > > > > I must confess up front that I may be a bit of a lurker -> > > between> > > > my> > > > > > job> > > > > > > and HPS work, I tend to get a bit overwhelmed sometimes and> > just> > > > > plain> > > > > > > tired. Grin! But, I'll do my best to pop in and be active.> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2007 Report Share Posted July 29, 2007 , So, that brings us to the very reason that the Pulmonary Fibrosis Foundation is in exsistence....to raise $$$$$ for awareness and research. I knew that gene research for PF was underway, but you have helped me understand why. It is so exciting to think that in the years to come, this hideous disease may be easily treated or eradicated. You and your group are doing a good work....for HPS and PF. Thanks from the PFers. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > > > >> > > > > > > > >> > > > > > > > > Hello!> > > > > > > > >> > > > > > > > > My name is . I'm 34, live in Kansas and was> > diagnosed> > > > > with> > > > > > PF> > > > > > > a> > > > > > > > > year ago in August. Before that I had lung inflammation> > and> > > an> > > > > > > > > asthma-like "thing" going on. My PF is due to> > > Hermansky-Pudlak> > > > > > > > Syndrome,> > > > > > > > > a very rare genetic condition that causes albinism, a> > visual> > > > > > > > impairment,> > > > > > > > > a bleeding disorder, and depending on the gene mutation> > > > > involved,> > > > > > > > > Crohn's and pulmonary fibrosis. I have the whole party> > > > package!> > > > > > > Grin!> > > > > > > > My> > > > > > > > > fibrosis is pretty mild right now, and my FVCs were good> > as> > > of> > > > > > four> > > > > > > > > months ago. I'm currently part of a clinical trial for> > > > > Pirfenidone> > > > > > > at> > > > > > > > > the NIH.> > > > > > > > >> > > > > > > > > I'm also the director of outreach and vice president of> > the> > > > > > patient> > > > > > > > > group for HPS. I wanted to join a few PF listservs in> > hopes> > > > that> > > > > I> > > > > > > > could> > > > > > > > > learn more, both for myself as well as for the families> I> > > work> > > > > > with> > > > > > > > all> > > > > > > > > the time.> > > > > > > > >> > > > > > > > > I must confess up front that I may be a bit of a lurker> -> > > > > between> > > > > > my> > > > > > > > job> > > > > > > > > and HPS work, I tend to get a bit overwhelmed sometimes> > and> > > > just> > > > > > > plain> > > > > > > > > tired. Grin! But, I'll do my best to pop in and be> active.> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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