Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 I have a question? What is " perneoplasty? " Also, has anyone had benefit from the testerone (sp?) creme? I had that burning off of the HVP way back in July and am still in pain. My gyno wanted me to try that aloing with steroid creme, but I was told by a friend it made it worse. Comments? Thanks! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Lainey, It's actually a perineoplasty, I spelled it incorrectly. Anyway, what was done is the affected area was excised and then the vaginal tissue was advance to cover the excoriated surgical area. The surgery isn't for everyone. If you would like more details please feel free to e-maill me. ---------- > From: Lainey9911@... > To: VulvarDisordersonelist > Subject: Re: update > Date: Tuesday, February 02, 1999 8:46 PM > > From: Lainey9911@... > > I have a question? What is " perneoplasty? " > > Also, has anyone had benefit from the testerone (sp?) creme? I had that > burning off of the HVP way back in July and am still in pain. My gyno wanted > me to try that aloing with steroid creme, but I was told by a friend it made > it worse. Comments? Thanks! Lainey > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 1999 Report Share Posted February 24, 1999 CONGRATULATIONS BECKIE!!!!!!!!! ---------- > From: RAL341@... > To: VulvarDisordersonelist; vulvarpainforum@... > Subject: update > Date: Wednesday, February 24, 1999 7:26 AM > > From: RAL341@... > > Hi Everyone, > I have not written in a while to give you an update on my surgery. To refresh > everyones memory, I had a vestibulectomy on December 15. The first time I had > intercourse after the surgery, it hurt! It was not the old pain but more like > a stretching type pain. After that, there has been no pain at all! So, I think > the surgery worked! I have had intercourse several times with NO > pain!!!!!!!!!!!!!!!!! I am very excited. (no pun intended!) > > Also, I still suffer from chronic pelvic pain. Last week I had a nerve block > done and they were able to pinpoint the exact nerve that is damaged. I am > finally getting some answers! I see my doctor next week and we will discuss my > options. I am probably looking at surgery where they will cut the nerve. The > only long term affect of that is chronic constipation. I think I can handle > that better than the pain! > > I just wanted to let everyone know, there is some hope out there. It just > takes time! This has been a long struggle for me but I am finally getting some > answers. Thanks for all of your support through my surgery. It is great to > have friends like you! > > Beckie > > ------------------------------------------------------------------------ > If you like the colors orange and blue, you will like our new web site! > http://www.onelist.com > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 1999 Report Share Posted February 24, 1999 CONGRATULATIONS BECKIE!!!!!!!!! ---------- > From: RAL341@... > To: VulvarDisordersonelist; vulvarpainforum@... > Subject: update > Date: Wednesday, February 24, 1999 7:26 AM > > From: RAL341@... > > Hi Everyone, > I have not written in a while to give you an update on my surgery. To refresh > everyones memory, I had a vestibulectomy on December 15. The first time I had > intercourse after the surgery, it hurt! It was not the old pain but more like > a stretching type pain. After that, there has been no pain at all! So, I think > the surgery worked! I have had intercourse several times with NO > pain!!!!!!!!!!!!!!!!! I am very excited. (no pun intended!) > > Also, I still suffer from chronic pelvic pain. Last week I had a nerve block > done and they were able to pinpoint the exact nerve that is damaged. I am > finally getting some answers! I see my doctor next week and we will discuss my > options. I am probably looking at surgery where they will cut the nerve. The > only long term affect of that is chronic constipation. I think I can handle > that better than the pain! > > I just wanted to let everyone know, there is some hope out there. It just > takes time! This has been a long struggle for me but I am finally getting some > answers. Thanks for all of your support through my surgery. It is great to > have friends like you! > > Beckie > > ------------------------------------------------------------------------ > If you like the colors orange and blue, you will like our new web site! > http://www.onelist.com > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Heidi...I'm sorry to hear you aren't any better. Did you make an appt. with your doctor? Maybe it would be good for him to see you while you are so red & in so much pain. Since you are having trouble getting pregnant have you ruled out having edometrosis. Just a thought. Take care & keep us updated. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Heidi...I'm sorry to hear you aren't any better. Did you make an appt. with your doctor? Maybe it would be good for him to see you while you are so red & in so much pain. Since you are having trouble getting pregnant have you ruled out having edometrosis. Just a thought. Take care & keep us updated. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 1999 Report Share Posted March 8, 1999 Heidi, I am really sorry that you are having so much pain. I know that this will sound kind of simplistic, but have you tried the low oxalate diet and the calcium citrate? It hasn't gotten rid of my pain really but I do get a lot worse if I eat too many medium oxalate foods. I don't know if you have tried this but it could help you. <A HREF= " http://www.branwen.com/rowan/oxalate.htm " >The Low Oxalate Diet</A> <A HREF= " http://www.vulvarpainfoundation.org./Low_oxalate_treatment.htm " >Low Oxalate Treatment</A> I know it is scary now, but you will find something to help. Sometimes it is just trial and error. I hope you get some answers very soon. Take care Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't have any suggestions but I wanted you to know that I was thinking about you. I have a question for you and any other who have missed work because of the pain - what exactly do you say??? Heidi, don't respond to me until you are feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't have any suggestions but I wanted you to know that I was thinking about you. I have a question for you and any other who have missed work because of the pain - what exactly do you say??? Heidi, don't respond to me until you are feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't have any suggestions but I wanted you to know that I was thinking about you. I have a question for you and any other who have missed work because of the pain - what exactly do you say??? Heidi, don't respond to me until you are feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi: Thanks for letting us know how you're doing. Did you tell me you were on antibs. recently? I'm wondering if that caused all this. Let me know. In the meantime, I hope you can get into see your gyno after your period. As far as work goes, you can't help it if you are having a problem right now. I'm hoping they will understand. I had to talk to my boss about my IC at the time and they seemed pretty understanding, so maybe let someone know you are having female problems and are trying to take care of it. I'm so sorry this is happening to you! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi: Thanks for letting us know how you're doing. Did you tell me you were on antibs. recently? I'm wondering if that caused all this. Let me know. In the meantime, I hope you can get into see your gyno after your period. As far as work goes, you can't help it if you are having a problem right now. I'm hoping they will understand. I had to talk to my boss about my IC at the time and they seemed pretty understanding, so maybe let someone know you are having female problems and are trying to take care of it. I'm so sorry this is happening to you! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi: Thanks for letting us know how you're doing. Did you tell me you were on antibs. recently? I'm wondering if that caused all this. Let me know. In the meantime, I hope you can get into see your gyno after your period. As far as work goes, you can't help it if you are having a problem right now. I'm hoping they will understand. I had to talk to my boss about my IC at the time and they seemed pretty understanding, so maybe let someone know you are having female problems and are trying to take care of it. I'm so sorry this is happening to you! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Nery: Years ago I worked for a woman boss. I went into her office, closed the door and told her I was having some women problems. I started off by talking about my bladder and IC problems. I know most woman can relate to bladder pain. Then I told her I was also having extreme vaginal pain. We worked out that I would use up my lunch hour for doctor appts. or work later if need be. I used up personal days, sick days, vacation time on it, which didn't help my stress level as I never got a vacation! But, it did help in knowing SHE knew I was doing my best to deal with something chronic and still work. I did miss a lot, BTW. As far as male bosses, just saying you have female problems usually shuts them up. I don't mean to sound mean. It's just when I've said it, they blush and mumble and say, ah, ah, okay. We have to keep our sense of humor here. One thing I did learn, they can't fire you for being sick. There are now laws in place to protect anyone with a disability. Hope this helps some. Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Nery: Years ago I worked for a woman boss. I went into her office, closed the door and told her I was having some women problems. I started off by talking about my bladder and IC problems. I know most woman can relate to bladder pain. Then I told her I was also having extreme vaginal pain. We worked out that I would use up my lunch hour for doctor appts. or work later if need be. I used up personal days, sick days, vacation time on it, which didn't help my stress level as I never got a vacation! But, it did help in knowing SHE knew I was doing my best to deal with something chronic and still work. I did miss a lot, BTW. As far as male bosses, just saying you have female problems usually shuts them up. I don't mean to sound mean. It's just when I've said it, they blush and mumble and say, ah, ah, okay. We have to keep our sense of humor here. One thing I did learn, they can't fire you for being sick. There are now laws in place to protect anyone with a disability. Hope this helps some. Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, I woud call your doctor and tell him/her you need to see them asap. You will take whatever appointment there is. As I have told you in other notes when I am in a great deal of pain and can't seem to get through on the telephone I go and sit n the doctors office and so farI have always been seen. You need to go asap so the doctor and SEE where the pain is located. I had that sharp pain you are describing. My period(which is never late) was 10 days late. I got (not really cramps) but sharp pains where my ovaries might be. For 2 days I could hardly stand up. It finally did go away but I plan to ask my doctor about it when I see her next week. As far as work goes, I took my boss aside and explained what was happening to me. She thought I could just go to the doctor get some medicine and it would go away. Well we all know that is NOT the way it is. She seems to be more sympathetic now. Also they can't fire you because you are sick! Have you tried the cool compresses? Sometimes I put a few ice cubes in a napkin and hold that between my legs. Pretty soon I do't feel anythng. I do hope you feel better soon. MIchele D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, I woud call your doctor and tell him/her you need to see them asap. You will take whatever appointment there is. As I have told you in other notes when I am in a great deal of pain and can't seem to get through on the telephone I go and sit n the doctors office and so farI have always been seen. You need to go asap so the doctor and SEE where the pain is located. I had that sharp pain you are describing. My period(which is never late) was 10 days late. I got (not really cramps) but sharp pains where my ovaries might be. For 2 days I could hardly stand up. It finally did go away but I plan to ask my doctor about it when I see her next week. As far as work goes, I took my boss aside and explained what was happening to me. She thought I could just go to the doctor get some medicine and it would go away. Well we all know that is NOT the way it is. She seems to be more sympathetic now. Also they can't fire you because you are sick! Have you tried the cool compresses? Sometimes I put a few ice cubes in a napkin and hold that between my legs. Pretty soon I do't feel anythng. I do hope you feel better soon. MIchele D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 From Deb at DLitzFletc@... Heidi, Ditto what Micelle said. I have always been able to get to my gyn by phone and/or get an appointment when I really needed him to take a look at what was going on and hash out a treatment plan with me. As for the sharp pain in the region of the ovaries, I had several severe episodes between the ages of 13 and 34 and several times was told it was probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong! I had severe endo and was at the point that ovulation on by left side left me doubled over in pain before the endo was discovered when I had a tubal ligation. Anyone who has this type of pain should follow up with their doctor. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 From Deb at DLitzFletc@... Heidi, Ditto what Micelle said. I have always been able to get to my gyn by phone and/or get an appointment when I really needed him to take a look at what was going on and hash out a treatment plan with me. As for the sharp pain in the region of the ovaries, I had several severe episodes between the ages of 13 and 34 and several times was told it was probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong! I had severe endo and was at the point that ovulation on by left side left me doubled over in pain before the endo was discovered when I had a tubal ligation. Anyone who has this type of pain should follow up with their doctor. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 From Deb at DLitzFletc@... Heidi, Ditto what Micelle said. I have always been able to get to my gyn by phone and/or get an appointment when I really needed him to take a look at what was going on and hash out a treatment plan with me. As for the sharp pain in the region of the ovaries, I had several severe episodes between the ages of 13 and 34 and several times was told it was probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong! I had severe endo and was at the point that ovulation on by left side left me doubled over in pain before the endo was discovered when I had a tubal ligation. Anyone who has this type of pain should follow up with their doctor. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, Call both of the doctors' offices and see which one seems most responsive and can see you soonest. Part of my criteria for a good doctor is having a staff that is responsive to patient needs and does not just run interference, put you on hold immediately when you call before you can even identify yourself and your problem, or tell you that you should be okay just wait until your next scheduled appointment. I think some of us forgot that you were between doctors, myself included. Another thought on doctors --- I had a gyn as my primary care during the 18 months when my endo had escalated out of control, then after the hysterectomy I started having vulvodynia symptoms, then 6 months later was diagnosed with ic. It worked well for me because it eliminated the middleman in getting to the gyn who could address my primary needs at the time. My doctor was also pretty good with run of the mill stuff like allergies, sinus infections, strep throat etc. When my insurance changed, I had to switch to an internist as the new one does not allow gyns to be primary care physicians. Thankfully, land passed a law that women do not have to get referrals to go to a gyn for a gynecological problem. I can't imagine what a nightmare this would be if an internist or family practice guy who knew nothing about vulvodynia was playing gatekeeper and I needed a referral every time I went to the gyn. I am sure that I have gone no less than 12 times each of the last two or three years! I tease the office staff that if Dr. gave out frequent flier miles they would see me less often because I would be in Hawaii or some place else warm and worry free! Hope you match a connection with a good doctor soon. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, Call both of the doctors' offices and see which one seems most responsive and can see you soonest. Part of my criteria for a good doctor is having a staff that is responsive to patient needs and does not just run interference, put you on hold immediately when you call before you can even identify yourself and your problem, or tell you that you should be okay just wait until your next scheduled appointment. I think some of us forgot that you were between doctors, myself included. Another thought on doctors --- I had a gyn as my primary care during the 18 months when my endo had escalated out of control, then after the hysterectomy I started having vulvodynia symptoms, then 6 months later was diagnosed with ic. It worked well for me because it eliminated the middleman in getting to the gyn who could address my primary needs at the time. My doctor was also pretty good with run of the mill stuff like allergies, sinus infections, strep throat etc. When my insurance changed, I had to switch to an internist as the new one does not allow gyns to be primary care physicians. Thankfully, land passed a law that women do not have to get referrals to go to a gyn for a gynecological problem. I can't imagine what a nightmare this would be if an internist or family practice guy who knew nothing about vulvodynia was playing gatekeeper and I needed a referral every time I went to the gyn. I am sure that I have gone no less than 12 times each of the last two or three years! I tease the office staff that if Dr. gave out frequent flier miles they would see me less often because I would be in Hawaii or some place else warm and worry free! Hope you match a connection with a good doctor soon. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, This may sound simplistic, but I've found that when I have fragile skin with those darn little splits in it, applying either vaseline or Crisco helps somewhat. It isn't a cure, but it does soothe and protect the skin. Hope you start feeling better soon! At 01:36 PM 3/9/1999 -0800, you wrote: > > >I would insist that I get in to see my Gyn except for one minor problem >- I don't have a Gyn right now. In fact, I don't even have a primary >care physician right now as I just switched insurance plans. > >I did send an email to the ISSVD and requested the names of any >physicians in MN who belong. They sent me the names of two, and >amazingly, both are covered under my insurance. I'm going to try to get >appointments with them as soon as I send this message. I'll let you >know what happens. > >As far as the low ox diet/calcium citrate. I've " been there, done that " >with no help whatsoever. I guess I've tried just about everything up to >this point and the only thing that has helped even a little is the >Estrace. > >Last night upon examination of the irritated vulvar skin, I noticed that >the bad area is VERY shiny. My husband said it looks as if it's really >thin and you can see blood vessels through it, or there are tiny >hairline cuts or cracks. There was blood there, but we couldn't be >absolutely sure if it was from my period or not. We doubted it because >it was so much higher than the vagina. Anyway - even the Estrace is >burning the area now. *sigh* Didn't someone on here say that if the >skin is shiny it's because it's thinned? > >Anyway - wish me luck as I try to get an appointment with *someone*! > >Heidi > >------------------------------------------------------------------------ >Did you know that we have over 85,000 e-mail communities at Onelist? >http://www.onelist.com >Come visit our new web site and explore a new interest >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 I would insist that I get in to see my Gyn except for one minor problem - I don't have a Gyn right now. In fact, I don't even have a primary care physician right now as I just switched insurance plans. I did send an email to the ISSVD and requested the names of any physicians in MN who belong. They sent me the names of two, and amazingly, both are covered under my insurance. I'm going to try to get appointments with them as soon as I send this message. I'll let you know what happens. As far as the low ox diet/calcium citrate. I've " been there, done that " with no help whatsoever. I guess I've tried just about everything up to this point and the only thing that has helped even a little is the Estrace. Last night upon examination of the irritated vulvar skin, I noticed that the bad area is VERY shiny. My husband said it looks as if it's really thin and you can see blood vessels through it, or there are tiny hairline cuts or cracks. There was blood there, but we couldn't be absolutely sure if it was from my period or not. We doubted it because it was so much higher than the vagina. Anyway - even the Estrace is burning the area now. *sigh* Didn't someone on here say that if the skin is shiny it's because it's thinned? Anyway - wish me luck as I try to get an appointment with *someone*! Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Heidi, I would call your doctor and demand to be seen. No one should have to suffer like that without even seeing the doctor. If you have problems with him/her, switch doctors. Hope your agony lessens soon. Quote Link to comment Share on other sites More sharing options...
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