Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 > 1. What solutions have you found to alleviate the pain during intercourse (other than KY creme) > > > Regards, > Frederikke > I wish you didn't have to be here, but I know these ladies will provide a lot of info. Your doctor can prescribe lidocaine (or xylocaine) gel or liquid which you can use 15 minutes or so before intercourse to numb the area that causes you the pain. Works for me, although the intercourse itself leaves me sore later. -Kitty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 > From: rbbb@... > > 1. What solutions have you found to alleviate the pain during intercourse (other than KY creme) You could try teething gel. It works for some of us. Mix it with something else like vaseline. > 3. My period seems to be almost dissapearing (only 1-2 days now and very weak). Anybody else who has had this experience? You might want to have your thyroid checked. That happened to me when I was 29 and I started taking thyroid meds and it went away. Ora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 What happens if it goes up front to the more 'sensitive areas' Allan. You would go numb! but it is a jel, and fairly easy to keep localized in the vestibule area (where I have the most pain) I use the 2% which helps some, without getting rid of all the pain. Some ladies have been prescribed a 4% liquid which is applied using a cotton ball, and they report that it stops all the pain during. Later however.....we all pay for it. -Kitty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Hi Martha, I hope that you don't mind my e-mailing you privately. One suggestion that I would like to make is to also have her dr give her a prescription for xylocaine 5% ointment. This ointment is a topical anesthetic. I use it a lot in addition to the days when I also need to take a pain pill. For my really bad days I use Darvocet. I do hope that the Tylenol 3 is of help to her. Also check out the website for the Vulvar Pain Foundation. The link for it is: http://www.vulvarpainfoundation.org and the link for the National Vulvodynia Association. The link is: http://www.nva.org Some ladies are trying a specialized diet called the low oxalate diet. I have a website that pertains to the foods that are high, medium, and low in oxalate. If you would like it or some of the other links that I have bookmarked please let me know and I will be glad to give them to you. I was diagnosed with vulvodynia back in Sept of last year. When I told my prior dr about the pains that I was having he didn't take me seriously and told me that I probably just had a tender cervix, but I knew better. I wrote an article for a Women's Health site about what it has been like for me to live with both vulvodynia and endometriosis. I will also be glad to share that link with you if you wish. If you just need to have a private chat please feel free to drop me a line. Please take care, and tell your daughter that she will be in my thoughts and that I hope that she gets to feeling better soon. Kristy _____________________________________________________________ Get YourName@... email Today! Visit http://mail.mariah-fan.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Thank you Kristy! Mara does have email at school. She still thinks this will all end when her period ends in a day or so. The doctor she has seems very well versed on Vulvodynia. The doctor has called her at home three times this week and last night prescribed some kind of premarin cream I think. You can email her at mlohrstorfer@... I will forward this email to her. I dont' think either of us mind a private email, and your links sound wonderful. Please do send them to us. Thank you for all your concern. MarthaL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2000 Report Share Posted June 9, 2000 Vicki, Welcome. I have Lichen Sclerosis too. I did not have any bladder infections that were related to my condition, lots of yeast infections though. I just got diagnosed about 4-5 weeks ago. I am on the testosterone gel, naturally compounded. Have seen great improvement but still have 1 problem area. I take calcium citrate, the no wheat or dairy kind, it seems to help. My urine is not as acidic which helps the skin. There are different theories as to what causes LS, the most common thought is yeast, I think this is true for me. Dee from this group has had it really bad, she is on vacation or I'm sure she would give her input. Right now she is in remission. She uses the testosterone cream and Estrace cream (hormone creams). She does not feel hers is yeast related. You should read the archives of this group, Dee was and still is a great help to me not only with my diagnosis, but I knew what to ask for to get treated. My pharmacist said that if you are lacking in certain hormone levels, these creams really do help, and most of the time without the harsh side effects. My hormone levels all tested fine, but do they test for over producing or low level? I don't really know. I just know the testosterone gel is helping for me. That means this condition (LS) could also be hormone related. The testosterone cream strengthens the skin and rebuilds it, so does the Estrace. Are you using anything now? You need to work with your doctor to see what is right for you. Gather all the facts you can, present your doctor with the treatment options you think are best for you. This group can really help you with that. There is hope, Dee is in remission. I'll wait for your reply. In Cleve. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Welcome , I am so sorry to hear that you were diagnosed with vestibulitis, but I'm glad that you managed to find us. We all have been where you are now, as for being newly diagnosed. You probably wonder why women never heard of these diseases before now, right? It seems to be the best kept secret from women and the medical education on this for doctors is almost nonexisistance. This will be changing soon, hopefully. You were very fortunate to have a doctor knowledgeable on this. I understand you are looking for a second opinion, that is a good idea. Where do you live, maybe someone in the group living near your area could refer another doctor knowledgeable in this? There is hope in all this, but a second opinion is always best when a doctor suggest surgery. You are not alone, we are here to help each other. Did your doctor give you any information to read for helping you understand your medical problem? Did your doctor give you anything for pain? Everyone is different when it comes to treatment and treatments may not work the same for each person. I am courious to know if he is doing anything to help with the pain while you get a second opinion? Please feel free to write and ask all the questions you have. Main thing is, don't be afraid that there is no one who understands what you are going through, we do! Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 Hi , my name is and I am twenty seven and was diagnosed with vestibulitis just this week. Two years ago I was diagnosed with Lichensclerosis but all the meds for that just made me worse. When I visited this new doctor he told me there was no signs of LS but I did have VV. This he said explained why the meds(estrace and steroids)made it worse. He did talk about surgery but only as a very last resort and said that only about 4-6% of patients get to that point. He has told me not to put anything at all on, but to use a squirt bottle after urination, charmin free toilet paper, nutragena soap, dreft laundry detergent and I am now taking calcium citrate. He did give me a very low dosage tricyclic(?) antidepressent for the pain he said is mainly due to nerve damage. In six months I will have to start physical therapy for my pelvic muscles. He says it is a long road but that I will feel better. Where are you located? You can email me separately if you wish at skellyp@.... Hang in there and get another opinion!!! --- Allston wrote: > > hello everyone, my name is and i have never > been involved in any sort > of chat group or email group, so please excuse my > nervousness! > I am very excited at the prospect of hearing from > others with vestibulitis > (as well as other vulvar disorders), as i am newly > diagnosed and very > confused and nervous, especially since I know no one > who can relate to my > problem. I am feeling at my wits end and would love > to hear any encouraging > words... can it get better? > > To give you all some background, I am 26 years old > and failing miserably at > my attempts to have a normal sex life with my > partner of two years because > of this escalating problem. My partner is my first, > so i thought the pain > was normal. Then I went on birthcontrol and > struggled for many months > trying to find a pill that would not affect my sex > drive. (I thought > vaginal dryness was causing the pain.) Then, when > it still didn't get > better, I thought my boyfriend was just too big for > me.... but as the pain > increased, i finally sought medical advice. My MD > diagnosed me with > vestibulitis and has given me creams but is > recommending surgery and I am > SCARED. I haven't been able to track down a doctor > with any experience in > the area to give me a second opinion. > > I suppose I am looking to know I am not alone, and > would love to hear of > anyones personal experiences with treatments.... > I look forward to hearing from you! > > sincerely, > katie > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Hi. I just subscribed to this list and received my first posts today. I know I am rushing it but I am sure you all understand the urgency. I have had Interstitial Cystitis for 17 years, Fibromylgia and Celiac for 13 years and am not at all sure of how long I have had Vulvodynia. I went to Dr. Whitmore in Philly for the IC a few years ago and she diagnosed me with Vulvodynia. Not really sure how long I had it because I thought it was the bladder that was causing so much pain. I have an appt on Monday with my GYN. I am going to talk to him about having an internal pump put in. I live on 3 percocets and day right now and work full time. I am doing hypnosis right now but it has only been 3 weeks so I am not getting much relief from it. Questions Are there any articles you can point me to that tell what is the best medication or cream for vulvodynia? Any info on pain pumps? Anyone notice any cuts from vulvodynia? Do you have a homepage with info? I signed up for digest email and wonder if I am missing something. Thanks. Fellow sufferer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Hi. I just subscribed to this list and received my first posts today. I know I am rushing it but I am sure you all understand the urgency. I have had Interstitial Cystitis for 17 years, Fibromylgia and Celiac for 13 years and am not at all sure of how long I have had Vulvodynia. I went to Dr. Whitmore in Philly for the IC a few years ago and she diagnosed me with Vulvodynia. Not really sure how long I had it because I thought it was the bladder that was causing so much pain. I have an appt on Monday with my GYN. I am going to talk to him about having an internal pump put in. I live on 3 percocets and day right now and work full time. I am doing hypnosis right now but it has only been 3 weeks so I am not getting much relief from it. Questions Are there any articles you can point me to that tell what is the best medication or cream for vulvodynia? Any info on pain pumps? Anyone notice any cuts from vulvodynia? Do you have a homepage with info? I signed up for digest email and wonder if I am missing something. Thanks. Fellow sufferer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2000 Report Share Posted July 6, 2000 Hi Ginny I'd suggest going to the home pages of EGroups, enter with your password and clink on our group... Go to the archives you can check out the messages posted there by the month and read what might interest you. I'm sure there's loads of info that can get you started. Take care and welcome to our 'family' sorry you have to be here, but glad you found us. Warmest, Dee~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2000 Report Share Posted July 6, 2000 Welcome Ginny, I can relate to the IC and the Vulvodynia. I was diagnosed first with the vv, but was having trouble with my bladder which I thought was caused by my vv. I recently found out that I have IC and started medication and treatment for a dysfunctional pelvic floor. To tell you the truth, I don't know myself for certain which was first. I am leaning towards that the IC was there before my vv, I am on a scale of 6 on my IC, which means I went undiagnosed for years to have so much damage to my bladder. My Urologist put me on medication and had me start with a PT that specializes on IC patients. I have been in less pain with my vv since starting PT. I was amazed that my pain is light compared to the way I felt for years. One of the common problems women have with IC is Vulvodynia. I will send you a web site to look up and read. The site explains how the vv pain and IC are common. http://www.obgyn.net/avtranscripts/carter_butrick.htm This site has been very informative for me since I never heard of Vulvodynia and IC before January of this year. The one thing I asked my doctor for was Lidocaine to put topically on the outside of my vagina when I am feeling discomfort. This helps a lot, because it gives you a break from pain. He wrote a prescrition and had a compound pharmacist make the strength to 10%, which is much better than 2% that is normally prescribed. I know that you are in great pain, but my GYN was no help to me with vv, but my urologist has bended over backwards to keep me as pain free as possible. Hopefully your GYN will know more about vv than my GYN, she didn't have a clue. I wish you the best of luck, take good care of yourself. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2000 Report Share Posted July 6, 2000 Welcome Ginny, I can relate to the IC and the Vulvodynia. I was diagnosed first with the vv, but was having trouble with my bladder which I thought was caused by my vv. I recently found out that I have IC and started medication and treatment for a dysfunctional pelvic floor. To tell you the truth, I don't know myself for certain which was first. I am leaning towards that the IC was there before my vv, I am on a scale of 6 on my IC, which means I went undiagnosed for years to have so much damage to my bladder. My Urologist put me on medication and had me start with a PT that specializes on IC patients. I have been in less pain with my vv since starting PT. I was amazed that my pain is light compared to the way I felt for years. One of the common problems women have with IC is Vulvodynia. I will send you a web site to look up and read. The site explains how the vv pain and IC are common. http://www.obgyn.net/avtranscripts/carter_butrick.htm This site has been very informative for me since I never heard of Vulvodynia and IC before January of this year. The one thing I asked my doctor for was Lidocaine to put topically on the outside of my vagina when I am feeling discomfort. This helps a lot, because it gives you a break from pain. He wrote a prescrition and had a compound pharmacist make the strength to 10%, which is much better than 2% that is normally prescribed. I know that you are in great pain, but my GYN was no help to me with vv, but my urologist has bended over backwards to keep me as pain free as possible. Hopefully your GYN will know more about vv than my GYN, she didn't have a clue. I wish you the best of luck, take good care of yourself. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 Hi Kim, Sorry you are having this problem and have to be here, but at least you can get some good information and support here. Did your doctor actually see yeast when he diagnosed you? I think my Vestibulitis started from having a yeast infection for a long time, like you. If anti-fungal medecine doesn't you at all though your NP may be right, and it might be something else. Bug your doctors to do tests to try to figure out exactly what bacteria/yeast/infection you have. I'm starting to think sometimes doctors say you have vestibulitis when they just can't figure out what is wrong with you. So far the best thing I have found to deal with the pain is rinsing with water after I urinate. Always urinating after sex also ensures you don't get infections. Lots of people benefit from skin soothing or strenghtening things, like Estrace or even aloe vera gel. I know how you feel about dealing with the emotions that VVS cause. I am only 25 so like you I wonder if my sex life is already over. But I really feel most cases of VVS are totally curable, once they find out if there is an infection or if the skin has become sensitive from treatments for the infection. Good luck, keep us updated, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 Hi Kim, Sorry you are having this problem and have to be here, but at least you can get some good information and support here. Did your doctor actually see yeast when he diagnosed you? I think my Vestibulitis started from having a yeast infection for a long time, like you. If anti-fungal medecine doesn't you at all though your NP may be right, and it might be something else. Bug your doctors to do tests to try to figure out exactly what bacteria/yeast/infection you have. I'm starting to think sometimes doctors say you have vestibulitis when they just can't figure out what is wrong with you. So far the best thing I have found to deal with the pain is rinsing with water after I urinate. Always urinating after sex also ensures you don't get infections. Lots of people benefit from skin soothing or strenghtening things, like Estrace or even aloe vera gel. I know how you feel about dealing with the emotions that VVS cause. I am only 25 so like you I wonder if my sex life is already over. But I really feel most cases of VVS are totally curable, once they find out if there is an infection or if the skin has become sensitive from treatments for the infection. Good luck, keep us updated, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2000 Report Share Posted October 30, 2000 Hi Tom, Welcome to the list. It is by far the best RSD list on the net. What Deb forgot to tell you is that I'm the chat Mom so you need to let me know what your IM name is. If you don't have AIM already down loaded let me know and I will send you an invitation with an easy download to follow then it will let me know your chosen name. We chat every morning at 9 AM Eastern time and Monday and Thursday nights at 9 PM Eastern time. Hope to see you there. Felice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Arun Johorey wrote: > a) Is there any website from where I can find out about medical > instruments etc. like catheters, stents etc. This one contains many links based on individual products. It's NOT great, but may help you some if no one offers a better one: http://www.medmarket.com/index.cfm?id=product_guide > same as above for medicines. Most people start with http://rxlist.com/ There are many others, but RXList is a good starting point. Finally, if you aren't aware of list member Dawn Villejoin's wonderful web page, you should be: http://thevillejoins.tripod.com/MedicalTranscriptionPage.htm I hope these are helpful to you. Jayni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 Hi Jung, I also have a uterine size-or I think had a uterine size like yours.Mine was at 36 weeks,in gestational size and more or less what you are describing.I had a UAE only on one side and the size appears to have come down,on one side to just above the belly button. On the other side it appears untouched.However,I would NOT recommend UAE for anyone with this large a uterus.I had many,many complications that I would not put an animal through let alone a human being.( because of the size)I have had MRIs and they have been able to see much more than on ultra sound-not everything,but more.Of course I have been recommended to have a hysterectomy - one surgeon would do a " pre-shrink " with Lupron-a drug that is not without its own effects.Others would not use Lupron and some told me an incision from breastbone to pubic bone,others from pubic bone to belly button.Some say straight across,other up and down.So I think that surgical approaches and expertise can vary a lot. In my case I do not want a hysterectomy.I'm 49 ,I'll be 50 in the spring and I hope that menopause will more or less take care of things-they do shrink at menopause,but the bigger they are of course the less evident that shrinkage is. If you are sure that you want to go ahead with a hysterectomy,then you will have to shop around for surgeons.I would keep my ovaries and my cervix if I were ever to go ahead with surgery.This opinion also varies from surgeon to surgeon,but the ovaies play a very important role in a woman's health,even when we are in out 40's and beyond.Yet many surgeons feel that after 40 they should come out as a prevention for ovarian cancer-this may not be justified.So I would look into to it carefully.Also the cervix is another,almost regional thing.In France they don't take out a healthy cervix,neither,where I am in Canada.But from reading some of the posts,I understand U.S. surgeons often do.The cervix may play a role in sexual responsiveness and also as a structure to support what was previously supported by the uterus,but you would have to continue to go for Pap smears,just like now. I live in Canada so I can't help with any advice on surgeons or on voting in your area. Best, Bonnie Jung wrote: > hi everybody. My name is Tillie. I'm using my friend 's web site as my contact to the group. > > six years ago, 2 weeks after losing my child in pregnancy i had a myomectomy. they removed 24 tumors from my body, over 10% of my body weight. > > In july of 98 irealized the tumors were back. they have grown alot and quickly. They measure pubic bone to my diapragm and hip to hip, pressing out just below my right rib. They are so huge they can not even get a measurement of them on ultrasound. > > I just turned 43 and I'm no longer considering having kids(out of my own body) so I am looking at having a Hysterectomy. > > Does any one know of an excellent Doctor in the Palm Beach area of Florida? Iknow they can't vote, but can they do a complex surgery such as this??? > > Good Luck Everybody. LOVE. > > ___________________________________________________________________________ > Visit http://www.visto.com/info, your free web-based communications center. > Visto.com. Life on the Dot. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2001 Report Share Posted February 14, 2001 Hi, . I can understand how upsetting this large fibroid is at your age and still having your family life before you. You have had very rapid growth of this fibroid. If you have access to a teaching hospital, I would encourage you to contact them and ask for the names of any doctors who do myomectomies. You might also look for a urogynecologist -- they are a subspeciality of gynecology and do a lot of complex surgery. IMHO, I would want to see this fibroid removed and biopsied, just to be on the safe side. I hope our other members, expecially those in Canada, have other suggestions as well for you. Best of luck to you. Leonie Finkel loneyprpn@hot mail.com To: uterinefibroids cc: 02/13/01 Subject: NEW MEMBER 11:34 PM Please respond to uterinefibroi ds Hi, I found out last year in May that I had one large fibroid on the anterior wall of my uterus. I just turned 28 last december and I don't have any children right now but would like to in the future. I have seen two gynecologists where I live: Oshawa, Ontario, Canada and they both have told me that my only option was to have a hysterectomy or to have the uterine artery embolization done. I go on the 21st of this month to see another gynecologist up in Toronto and hopefully he can tell me differently. I only thing that I want to have done is the myoectomy; just to have to fibroid removed. I have heard so much about the UAE and I know it is not for me. Last July my uterus was the size of a 20 week pregnancy and now I think it is the size of a 24 to 25 week pregnancy and before may of last year there was no evidence of me having one. Since May of last year I have had 6 ultrasounds done, a CAT scan, a MRI, and in December I had a fine needle biopsy done on the fibroid to see if it was cancer. I even had blood work done, and the ones the doctor did was cancer markers. The only problems that this single fibroid is causing is that I have alot of cramping and back pain during the first couple of days when my period starts. Oh I forgot to mention the the fibroid is intramural and the ultrasound shows that it covers the whole anterior (front) wall of my uterus. I hate having it because it has changed the outlook on my future quite alot and I have my good days and my bad days too. If I see a pregnant women or even babies I feel like crying because I just don't know if I am going to have my own children some day. Need support and answers what would be the best for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Hi, I am a 36 year old who lives in Burlington, ON. I saw my GP, and a gyhecologist in Burlington, and then a friend recommended Dr. Paek, a gyn at Mount Sinai in TO. I see on this website that someone recommnds Dr. at Women's College Hospital in TO. I am looking for answers too. However, I do not think it should involve a hysterectomy. My doctor also did not recommend UAE as it has not been proven that it will not affect fertility. The studies have not been done. The procedure is too new. I do not understand measurements in terms of months of pregnancy. My intramural fibroid is 9.6 cm and was first noticed in late 1998. I am doing the " wait and see " approach to see how long I can hold out before surgery. I guess I really want it to be a last resort, but my fibroid is so big and I seem to not be able to get pregnant, but I do not know if the fibroid is the cause. Anyways, let me know what you find out. I would love to hear from you. You are the first person close to home that I have found who is going through this at the same time as I am. Robin > Hi, I found out last year in May that I had one large fibroid on the > anterior wall of my uterus. I just turned 28 last december and I > don't have any children right now but would like to in the future. I > have seen two gynecologists where I live: Oshawa, Ontario, Canada and > they both have told me that my only option was to have a hysterectomy > or to have the uterine artery embolization done. I go on the 21st of > this month to see another gynecologist up in Toronto and hopefully he > can tell me differently. I only thing that I want to have done is the > myoectomy; just to have to fibroid removed. I have heard so much > about the UAE and I know it is not for me. Last July my uterus was > the size of a 20 week pregnancy and now I think it is the size of a > 24 to 25 week pregnancy and before may of last year there was no > evidence of me having one. Since May of last year I have had 6 > ultrasounds done, a CAT scan, a MRI, and in December I had a fine > needle biopsy done on the fibroid to see if it was cancer. I even had > blood work done, and the ones the doctor did was cancer markers. The > only problems that this single fibroid is causing is that I have alot > of cramping and back pain during the first couple of days when my > period starts. Oh I forgot to mention the the fibroid is intramural > and the ultrasound shows that it covers the whole anterior (front) > wall of my uterus. I hate having it because it has changed the > outlook on my future quite alot and I have my good days and my bad > days too. If I see a pregnant women or even babies I feel like crying > because I just don't know if I am going to have my own children some > day. Need support and answers what would be the best for me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Hi, I am a 36 year old who lives in Burlington, ON. I saw my GP, and a gyhecologist in Burlington, and then a friend recommended Dr. Paek, a gyn at Mount Sinai in TO. I see on this website that someone recommnds Dr. at Women's College Hospital in TO. I am looking for answers too. However, I do not think it should involve a hysterectomy. My doctor also did not recommend UAE as it has not been proven that it will not affect fertility. The studies have not been done. The procedure is too new. I do not understand measurements in terms of months of pregnancy. My intramural fibroid is 9.6 cm and was first noticed in late 1998. I am doing the " wait and see " approach to see how long I can hold out before surgery. I guess I really want it to be a last resort, but my fibroid is so big and I seem to not be able to get pregnant, but I do not know if the fibroid is the cause. Anyways, let me know what you find out. I would love to hear from you. You are the first person close to home that I have found who is going through this at the same time as I am. Robin > Hi, I found out last year in May that I had one large fibroid on the > anterior wall of my uterus. I just turned 28 last december and I > don't have any children right now but would like to in the future. I > have seen two gynecologists where I live: Oshawa, Ontario, Canada and > they both have told me that my only option was to have a hysterectomy > or to have the uterine artery embolization done. I go on the 21st of > this month to see another gynecologist up in Toronto and hopefully he > can tell me differently. I only thing that I want to have done is the > myoectomy; just to have to fibroid removed. I have heard so much > about the UAE and I know it is not for me. Last July my uterus was > the size of a 20 week pregnancy and now I think it is the size of a > 24 to 25 week pregnancy and before may of last year there was no > evidence of me having one. Since May of last year I have had 6 > ultrasounds done, a CAT scan, a MRI, and in December I had a fine > needle biopsy done on the fibroid to see if it was cancer. I even had > blood work done, and the ones the doctor did was cancer markers. The > only problems that this single fibroid is causing is that I have alot > of cramping and back pain during the first couple of days when my > period starts. Oh I forgot to mention the the fibroid is intramural > and the ultrasound shows that it covers the whole anterior (front) > wall of my uterus. I hate having it because it has changed the > outlook on my future quite alot and I have my good days and my bad > days too. If I see a pregnant women or even babies I feel like crying > because I just don't know if I am going to have my own children some > day. Need support and answers what would be the best for me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Hi, I am a 36 year old who lives in Burlington, ON. I saw my GP, and a gyhecologist in Burlington, and then a friend recommended Dr. Paek, a gyn at Mount Sinai in TO. I see on this website that someone recommnds Dr. at Women's College Hospital in TO. I am looking for answers too. However, I do not think it should involve a hysterectomy. My doctor also did not recommend UAE as it has not been proven that it will not affect fertility. The studies have not been done. The procedure is too new. I do not understand measurements in terms of months of pregnancy. My intramural fibroid is 9.6 cm and was first noticed in late 1998. I am doing the " wait and see " approach to see how long I can hold out before surgery. I guess I really want it to be a last resort, but my fibroid is so big and I seem to not be able to get pregnant, but I do not know if the fibroid is the cause. Anyways, let me know what you find out. I would love to hear from you. You are the first person close to home that I have found who is going through this at the same time as I am. Robin > Hi, I found out last year in May that I had one large fibroid on the > anterior wall of my uterus. I just turned 28 last december and I > don't have any children right now but would like to in the future. I > have seen two gynecologists where I live: Oshawa, Ontario, Canada and > they both have told me that my only option was to have a hysterectomy > or to have the uterine artery embolization done. I go on the 21st of > this month to see another gynecologist up in Toronto and hopefully he > can tell me differently. I only thing that I want to have done is the > myoectomy; just to have to fibroid removed. I have heard so much > about the UAE and I know it is not for me. Last July my uterus was > the size of a 20 week pregnancy and now I think it is the size of a > 24 to 25 week pregnancy and before may of last year there was no > evidence of me having one. Since May of last year I have had 6 > ultrasounds done, a CAT scan, a MRI, and in December I had a fine > needle biopsy done on the fibroid to see if it was cancer. I even had > blood work done, and the ones the doctor did was cancer markers. The > only problems that this single fibroid is causing is that I have alot > of cramping and back pain during the first couple of days when my > period starts. Oh I forgot to mention the the fibroid is intramural > and the ultrasound shows that it covers the whole anterior (front) > wall of my uterus. I hate having it because it has changed the > outlook on my future quite alot and I have my good days and my bad > days too. If I see a pregnant women or even babies I feel like crying > because I just don't know if I am going to have my own children some > day. Need support and answers what would be the best for me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 In a message dated 01-02-22 13:32:09 EST, you write: << Hi, Leonie, I did have a needle biospy done on the fibroid in December. When the results came back they were negative and the MRI showed it was a fibroid too. >> I'm a little puzzled by this. I went through a cancer scare after my first MRI because one of the fibroids was degenerating and the radiologist said she couldn't rule out cancer. My gyn was urging a hysterectomy on me for that reason, but backed off after the gynecologist/oncologist she sent me to agreed with me that the odds of it being cancer were slight. (And an MRI taken months later bore this out.) At the time, I asked both doctors if there weren't some way to do a biopsy without opening me up to check for cancer, and I specifically asked about a needle biopsy, and both doctors told me " no. " This was an oncologist at Yale, so I took her word for it and opted to wait and see what a later MRI would tell us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Hi, Leonie, I did have a needle biospy done on the fibroid in December. When the results came back they were negative and the MRI showed it was a fibroid too. > > Hi, . I can understand how upsetting this large fibroid is at your > age and still having your family life before you. You have had very rapid > growth of this fibroid. If you have access to a teaching hospital, I would > encourage you to contact them and ask for the names of any doctors who do > myomectomies. You might also look for a urogynecologist -- they are a > subspeciality of gynecology and do a lot of complex surgery. IMHO, I would > want to see this fibroid removed and biopsied, just to be on the safe side. > I hope our other members, expecially those in Canada, have other > suggestions as well for you. Best of luck to you. Leonie Finkel > > > > loneyprpn@hot > mail.com To: uterinefibroids@y... > cc: > 02/13/01 Subject: NEW MEMBER > 11:34 PM > Please > respond to > uterinefibroi > ds > > > > > > > Hi, I found out last year in May that I had one large fibroid on the > anterior wall of my uterus. I just turned 28 last december and I > don't have any children right now but would like to in the future. I > have seen two gynecologists where I live: Oshawa, Ontario, Canada and > they both have told me that my only option was to have a hysterectomy > or to have the uterine artery embolization done. I go on the 21st of > this month to see another gynecologist up in Toronto and hopefully he > can tell me differently. I only thing that I want to have done is the > myoectomy; just to have to fibroid removed. I have heard so much > about the UAE and I know it is not for me. Last July my uterus was > the size of a 20 week pregnancy and now I think it is the size of a > 24 to 25 week pregnancy and before may of last year there was no > evidence of me having one. Since May of last year I have had 6 > ultrasounds done, a CAT scan, a MRI, and in December I had a fine > needle biopsy done on the fibroid to see if it was cancer. I even had > blood work done, and the ones the doctor did was cancer markers. The > only problems that this single fibroid is causing is that I have alot > of cramping and back pain during the first couple of days when my > period starts. Oh I forgot to mention the the fibroid is intramural > and the ultrasound shows that it covers the whole anterior (front) > wall of my uterus. I hate having it because it has changed the > outlook on my future quite alot and I have my good days and my bad > days too. If I see a pregnant women or even babies I feel like crying > because I just don't know if I am going to have my own children some > day. Need support and answers what would be the best for me. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2001 Report Share Posted February 22, 2001 Hi, Leonie, I did have a needle biospy done on the fibroid in December. When the results came back they were negative and the MRI showed it was a fibroid too. > > Hi, . I can understand how upsetting this large fibroid is at your > age and still having your family life before you. You have had very rapid > growth of this fibroid. If you have access to a teaching hospital, I would > encourage you to contact them and ask for the names of any doctors who do > myomectomies. You might also look for a urogynecologist -- they are a > subspeciality of gynecology and do a lot of complex surgery. IMHO, I would > want to see this fibroid removed and biopsied, just to be on the safe side. > I hope our other members, expecially those in Canada, have other > suggestions as well for you. Best of luck to you. Leonie Finkel > > > > loneyprpn@hot > mail.com To: uterinefibroids@y... > cc: > 02/13/01 Subject: NEW MEMBER > 11:34 PM > Please > respond to > uterinefibroi > ds > > > > > > > Hi, I found out last year in May that I had one large fibroid on the > anterior wall of my uterus. I just turned 28 last december and I > don't have any children right now but would like to in the future. I > have seen two gynecologists where I live: Oshawa, Ontario, Canada and > they both have told me that my only option was to have a hysterectomy > or to have the uterine artery embolization done. I go on the 21st of > this month to see another gynecologist up in Toronto and hopefully he > can tell me differently. I only thing that I want to have done is the > myoectomy; just to have to fibroid removed. I have heard so much > about the UAE and I know it is not for me. Last July my uterus was > the size of a 20 week pregnancy and now I think it is the size of a > 24 to 25 week pregnancy and before may of last year there was no > evidence of me having one. Since May of last year I have had 6 > ultrasounds done, a CAT scan, a MRI, and in December I had a fine > needle biopsy done on the fibroid to see if it was cancer. I even had > blood work done, and the ones the doctor did was cancer markers. The > only problems that this single fibroid is causing is that I have alot > of cramping and back pain during the first couple of days when my > period starts. Oh I forgot to mention the the fibroid is intramural > and the ultrasound shows that it covers the whole anterior (front) > wall of my uterus. I hate having it because it has changed the > outlook on my future quite alot and I have my good days and my bad > days too. If I see a pregnant women or even babies I feel like crying > because I just don't know if I am going to have my own children some > day. Need support and answers what would be the best for me. > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.