Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Keri, I'm sorry to hear about what you're going through. I think a second, if not a third, opinion on your case is warranted. I'd check with another doctor--preferably one who is familiar with AS--to see what he/she thinks before having surgery. Have you had your thyroid checked? Hyperthyroidism can stop your periods. Also, as the others have said, you should try provera. If that doesn't bring on your period, then try estrogen to see if that does trick. I'd take these less invasive measures before going ahead with the surgery. Good luck with everything. Terry M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Does anybody know if higher dose of birth control pills (i.e. ovcon 35) is the same, or more or less effective to try and get a withdrawal bleed than the Provera alone or Provera/estrogen combination? My doctor gave me Ovcon 35 instead of the Provera/estrogen combo because I was already on birth control pills to begin with AND still having amenorrhea. I had no withdrawal bleed (one or two light spots), and so they have diagnosed me with Ashermans syndrome (after ruling out other causes of amenorrhea). I am scheduled for a hysteroscopy and laparascopy, but am wondering if I should try one more round of hormones to try and get a withdrawal bleed. Keri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Hi , I was treated (hys and lap) by Shady Grove, too, for AS, but out of their town office. I also had a D&C in October after a miscarriage (8.5 weeks). If you e-mail me at JSDandCDB@... I'd be happy to let you know about my experience with Shady Grove. Joy > Hi everyone, > My name is Spellings and I'm currently being evaluated by Shady > Grove Fertility Science Center here in Northern Virginia. I haven't > officially been diagnosed with Ashermans. I had a D & C in October (by > my OB/GYN) after a miscarriage and haven't had a period since. > A HSG was performed, but the dye couldn't get in the cavity. There > seems to be a " blockage " at the base of the cavity - they can't > determine the extent of possible scarring right now. My doctor at Shady > Grove wants to perform a hysteroscopy and laproscopy to identify and > remove any scarring. > I look forward to communicating with everyone. And if you'd like to > know more information about me, please feel free to ask. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Dear S, Welcome to this group! This group has helped me tremendously! Both intellectually and spiritually. It is a very warm group of caring women. Many of whom have had some very sad stories, but seem to keep trying to be positive. I hope you get all your answers. Good luck with your work up and treatment!! I was wondering if we should use our last initial to identify ourselves since there are two of us!! <HUGS> D. ^'^ Angel ELijah 4/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Hi , I too was a patient through Shady Grove but in polis, Md. after a D&C following a retained placenta from a full term delivery (healthy 2 1/2 boy now). I then didn't get my period and my OB did a hyster. with no luck. She then referred me to Shady Grove. They also did a hysteroscopy with a little luck (some period but still a lot of scarring). I then found this web site and went to Dr. Issacson in Boston on the " A " list. He performed a hyster. and a lap. with total success. The gist of this is that I do feel fortunate that my Shady Grove Dr. knew enough to stop before creating any damage and was extremely encouraging when I went to Dr. Issacson. My Shady Grove Dr. then continued with me for my follow-ups, ultrasounds and measuring. I am absolutely thrilled with this doctor, especially his bedside manor so hopefully you receive the same kind of treatment through your Shady Grove Dr. but please don't forget at least look over the " A " list doctors on this website. If I had done that first, I may have avoided a surgery. The Doctor's name is Dr. Gil Mottla in polis and I assure you he is now more familiar with Asherman's if another doctor at Shady Grove would like to consult with him. Best of luck, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2003 Report Share Posted June 19, 2003 Hi , Welcome, you have definitely come to an excellent place to network and find support and information. This group has made all the difference to me since I found it shortly after my diagnosis. Is it possible for your doctor to only do a diagnostic hysteroscopy in order to give you an accurate diagnosis and some idea of severity? Then when you know exactly what you're dealing with, you might want to consider seeing one of the doctors on the A-List for treatment. I fought my HMO for an out-of-network referral to be treated by an A-list (Dr. Olive), and I'm so incredibly glad I did. A doctor may be very skilled but may not have much experience in the treatment of Ashermans. From everything I've read, it can be very different to do surgical hysteroscopy on an Ashermans uterus than a typical one. To find out your doctor's level of understanding and expertise with Ashermans, ask him/her the questions that can be found under files: Questions for your doctor. This may help you make a decision about how to proceed. I know many in this group have seen A-list doctors in your part of the country, and they would probably be willing to make their recommendations. Asherman's can be a very delicate surgery, and may be your one chance at saving your future fertility. Some women in this group ended up in worse shape after being treated by a less than experienced doctor. You at the very least need to know that you are being treated by doc who is experienced in the treatment of Ashermans, if this is what your diagnosis turns out to be. Don't be afraid to ask questions and lean on the rest of us. That's what we're all here for! Best wishes, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 , Thanks for letting me know. I'm encouraged by my doctor and the folks at Shady Grove. And its even better when you hear about other people and their good experiences. Are you planning to have more children? S. > Hi , I too was a patient through Shady Grove but in polis, > Md. after a D&C following a retained placenta from a full term > delivery (healthy 2 1/2 boy now). I then didn't get my period and my > OB did a hyster. with no luck. She then referred me to Shady Grove. > They also did a hysteroscopy with a little luck (some period but > still a lot of scarring). I then found this web site and went to Dr. > Issacson in Boston on the " A " list. He performed a hyster. and a lap. > with total success. > > The gist of this is that I do feel fortunate that my Shady Grove Dr. > knew enough to stop before creating any damage and was extremely > encouraging when I went to Dr. Issacson. My Shady Grove Dr. then > continued with me for my follow-ups, ultrasounds and measuring. I am > absolutely thrilled with this doctor, especially his bedside manor so > hopefully you receive the same kind of treatment through your Shady > Grove Dr. but please don't forget at least look over the " A " list > doctors on this website. If I had done that first, I may have avoided > a surgery. The Doctor's name is Dr. Gil Mottla in polis and I > assure you he is now more familiar with Asherman's if another doctor > at Shady Grove would like to consult with him. > > Best of luck, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 D., Thank you so much for the kind words and welcome! I'm glad to be a part of the group. (My middle name is , so I could be D. too! ) Good luck to you. And stay positive! S. > Dear S, > Welcome to this group! This group has helped me tremendously! Both > intellectually and spiritually. It is a very warm group of caring women. Many of whom > have had some very sad stories, but seem to keep trying to be positive. I hope > you get all your answers. > Good luck with your work up and treatment!! > I was wondering if we should use our last initial to identify ourselves since > there are two of us!! > > D. > ^'^ Angel ELijah 4/9/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Dear , I am sorry about your new diagnosis. I think seeing the " B " list doctor (if you cannot see and " A " ) is a great idea. It seems that getting your initial surgery done by someone who knows what they are doing is VERY important!! I did not unfortunately. But it has worked out for me, but some are not as fortunate. I have gotten pregnant one time after my AS, but I lost my son at 20 weeks. Have faith and you are on the right track by doing research and being VERY careful about whom you let do your surgery and evaluation! Good Luck!! D. ^'^ Angel ELijah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Hi , Welcome - I'm so sorry for the losses you've experienced, and all you've been through. Hopefully you're now on the right track. The most important aspect of treatment is being treated by a physician who is very experienced in the treatment of Ashermans. I believe under the " files " section there is a list of questions to ask your doctor regarding treatment. His/her answers may help you to determine if this person is experienced enough. I know the people in this group really encourage treatment by an A-list. At the encouragement of members a few months ago, I fought my HMO for an out-of-network referral to see an A-list (Dr. Olive), and am so incredibly pleased with the decision. However, many members of our group have been treated by other doctors with good outcomes. The biggest key is finding someone who is very experienced in AS. (Some of the A-list docs do as many as 15+ AS surgeries a month!) AS surgery is a very delicate surgery especially since a uterus with Ashermans can look completely different than a typical uterus. Sounds like you're on the right track by researching and asking questions. You've come to the right place. This group's knowledge and incredible support have made all the difference for me both physically and emotionally. Best wishes to you, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi Ginger, I am also a new member and can understand the pain you are now getting. I also got a similar pain, not exactly cramping pains as you would expect when you have a period, but a strong consistent pain that refuses to go away, the area where the pain is also feels swollen and sore. I find the pain gets worse in the evening and sometimes have had to give in and go to bed to shut the pain out. The pain would also get worse if I had been too physical with lots of bending, for instance using the vacuum cleaner or cleaning the inside of the car, where you are cramped up and bending over for long periods. I guess you are concerned that these pains are a sign that things are not well and are worrying yourself that you may not be able to get pregnant again. If it's any help I have had a difficult time due to asherman's but did suceed eventually. I gave birth to a child by normal delivery before I had ashermans(now 16) followed 5 years later by a prenancy that went wrong, the baby died inside because of a pre-cancerous growth on the placenta, the baby was removed by D & C and 6 weeks later I had a second D & C to make sure all of the growth had been removed, this caused a lot of scarring to my lining and after this my periods became extremely light, which at the time I thought was a good thing. 6 months later I was given the go-ahead to try for another baby, unfortunately 1 year later I gave birth to a still born little boy. A D & C was needed to remove the placenta as with ashermans the scarring stops the placenta from coming away naturally. After the trauma and sadness of losing two children in one year, I gave myself 2 years to recover in which time I hated all pregnant women, which was unfair. In 1994 I got pregnant again and received close monitoring to check on the pregnancy. This time it worked I managed to go full-term and gave birth to a healthy boy. Unfortunately, some of the placenta was left behind again and I haemorraged 16 days later, needing another D & C and treatment for an infection in my womb. I recovered but because I had lost so much blood was extremely weak for 6 months and did not enjoy my baby as much as I wanted to, luckily he was a really good baby and easy to look after which gave me valuable recovery time. In 1997 I had another baby, another little boy but only managed to hold onto the pregnancy for 6 months, due to excellent special care although born early he survived and although he has had his problems he is now 6 years old, is able to go to mainstream school and has brought our family a lot of joy and happiness. I would not have chosen to have waited to have my children in my 30's but I am really happy with my family. I am unable to have anymore children now as the asherman's has taken over and I have not had a peroid since my last pregnancy, but I still felt upset that the choice had been taken away from me. I can understand your worries, but want you to know it is possible to have a child as I have but it is more difficult than for most people. Please don't be so hard on yourself and give yourself time, you need to grieve and your body needs time to heal. I hope this is of some help to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Dear Ginger, What to do next is a difficult decision and I remember listening to everyone who said 'don't get pregnant', 'it's too dangerous, think of yourself', my mum was adamant that it was foolish to try again. But I have always gone with what my heart thinks and was very determined to try again. I feel giving myself time to grieve after losing both babies gave me the strength to fight on. In hindsight the only thing I would do differently is to have given myself more time before trying again after I lost the first baby. I hope that if you give yourself a little time you will feel stronger and be more certain about what you want to do, I don't think anyone is ever 100% certain that they are making the right choice, we all have our doubts and we all have our good days and our bad days. Keep fighting and good luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Dear , Thanks for sharing your story with me. On one hand, it gives me so much hope, yet on the other hand I feel like I should not build all that much hope. Best, Ginger > Hi Ginger, > > I am also a new member and can understand the pain you are now getting. I > also got a similar pain, not exactly cramping pains as you would expect when you > have a period, but a strong consistent pain that refuses to go away, the area > where the pain is also feels swollen and sore. I find the pain gets worse in > the evening and sometimes have had to give in and go to bed to shut the pain > out. The pain would also get worse if I had been too physical with lots of > bending, for instance using the vacuum cleaner or cleaning the inside of the car, > where you are cramped up and bending over for long periods. > > I guess you are concerned that these pains are a sign that things are not > well and are worrying yourself that you may not be able to get pregnant again. If > it's any help I have had a difficult time due to asherman's but did suceed > eventually. I gave birth to a child by normal delivery before I had > ashermans(now 16) followed 5 years later by a prenancy that went wrong, the baby died > inside because of a pre-cancerous growth on the placenta, the baby was removed by > D & C and 6 weeks later I had a second D & C to make sure all of the growth > had been removed, this caused a lot of scarring to my lining and after this my > periods became extremely light, which at the time I thought was a good thing. 6 > months later I was given the go-ahead to try for another baby, unfortunately > 1 year later I gave birth to a still born little boy. A D & C was needed to > remove the placenta as with ashermans the scarring stops the placenta from > coming away naturally. > > After the trauma and sadness of losing two children in one year, I gave > myself 2 years to recover in which time I hated all pregnant women, which was > unfair. In 1994 I got pregnant again and received close monitoring to check on the > pregnancy. This time it worked I managed to go full-term and gave birth to a > healthy boy. Unfortunately, some of the placenta was left behind again and I > haemorraged 16 days later, needing another D & C and treatment for an infection > in my womb. I recovered but because I had lost so much blood was extremely > weak for 6 months and did not enjoy my baby as much as I wanted to, luckily he > was a really good baby and easy to look after which gave me valuable recovery > time. > > In 1997 I had another baby, another little boy but only managed to hold onto > the pregnancy for 6 months, due to excellent special care although born early > he survived and although he has had his problems he is now 6 years old, is > able to go to mainstream school and has brought our family a lot of joy and > happiness. I would not have chosen to have waited to have my children in my 30's > but I am really happy with my family. I am unable to have anymore children now > as the asherman's has taken over and I have not had a peroid since my last > pregnancy, but I still felt upset that the choice had been taken away from me. > > I can understand your worries, but want you to know it is possible to have a > child as I have but it is more difficult than for most people. Please don't > be so hard on yourself and give yourself time, you need to grieve and your body > needs time to heal. > > I hope this is of some help to you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 , I realize that I am a complete and total stranger giving you an opinion on the internet not knowing any more about you than what you've already told me, so if I'm off-base, please forgive me. I really think you need to discuss these issues with your family if there is any way they can help you get treatment. You are so young, but if this is Asherman's and you have scarring, leaving it there for years can affect your future fertility. You do not want to be 10 years later wishing you had told them so you could get help, or worse yet, having them wish you had told them so they could help you. The surgical treatment for Asherman's can be expensive, but the diagnostic testing does not have to be. I had an SHG to check for scarring at a cost of @ $500. Please find a way to check and see what is wrong with you (if your family can't help you, do you have a church that can??). Hopefully it's something that a bottle of estrogen can take care of, but you do not want to jeapordize your reproductive future now!!! Sorry if I sound too preachy. I just know the hard way how it feels to want a family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Dear Ginger, I am so sorry for your losses and your dx of AS. It sounds as if you have found a good doctor to treat you. Please let us know the follow-up and what your doctor says about your current status? your lining sounds great. Did he say you can TTC?? Good Luck. LAura D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Ginger, I didn't get a chance to welcome you to our group. I see that a few members are helping you out with your questions. I tried to email you privately but your email keeps coming back, so I will send this through the group: Ginger, As I do with all new members, I remind them to delete the email they are responding to when you reply to emails. This is so that those receiving daily digests don't have to scroll down to find the next email and also to save valuable space on the site which we are limited to. Also, I was wondering about a pending member with the same email address as yourself. Did you try to join twice?? I am confused about this pending member and don't know if it the same person. Can you shed some light? Poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Ginger- A sad welcome to you- I certainly hope things work out well for you after your surgery- this is an amazing group of women- I hope they can help you find the answers you need , Mike, Brenna Jordan Ross-born 9/26/97(VSD, PS- open heart surgery 1/29/98), and Jaden Kalyan Ross-born in Cambodia July 15, 2001 home with us forever May 3, 2002, Colin Spencer Ross- born July 27, 2002, Baby Angel born still 11/7/00, and Riley and Snoozer the dogs Join us again next year in remembering the millions of people affected by CHD on 2/14/2003:Â "A Day for Hearts: Congenital Heart Defects Awareness Day!" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 - I am so sorry for what you've been through- and for the fact that you're facing this alone and without insurance. I wish I knew a good answer for you- but I think for the time being the best thing you can do is to arm yourself with information- so when you can deal with this you are prepared- when you get a job with insurance chose a policy most likely to cover this type of problem. If you can avoid seeking help until yyou have insurance because without prior insurance I believe in FL they CAN exempt pre-existing conditions from treatment for up to a year- with out a medical record it's not pre-existing (Insurance portability only requires them to cover if you have a pre-e condiiotn IF you had insurance before the new insurance) Also you might want to be prepared to complain of pain and light periods over fear of infertility when you see a Dr- so you don't have to deal with tis being seen as an infertility issue- and finally when you can get insurance you might want to check if you have a choice in policies for one that covers an A-list Dr. I wish you the very best in your journey!!! , Mike, Brenna Jordan Ross-born 9/26/97(VSD, PS- open heart surgery 1/29/98), and Jaden Kalyan Ross-born in Cambodia July 15, 2001 home with us forever May 3, 2002, Colin Spencer Ross- born July 27, 2002, Baby Angel born still 11/7/00, and Riley and Snoozer the dogs Join us again next year in remembering the millions of people affected by CHD on 2/14/2003:Â "A Day for Hearts: Congenital Heart Defects Awareness Day!" Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Hi- My name is April and I live in a very small town called Rapelje in Montana. I am about 1 hour from Billings. I have not officially been diagnosed with Asherman's but I have come to this conclusion on my own. After a third miscarriage in October 2002, I was told I needed to have a D & C to make sure everything was cleaned out. I did have the procedure in November and was told I would have a period in 6-8 weeks. Previous doctors had told me I might be entering menopause so when I didn't have a period I wasn't really worried. I did feel like my stomach was puffy but just attributed it to getting older. After 6 months and no period I started severly hemorrhaging on May 27th.and had to have another D & C. I was told it might have been caused by tissue missed the first time but was highly unlikely. The doctor insisted it was a new pregnancy. I didn't really think this was true but had no explanation either. I still have not had a period and feel like my stomach is starting to get puffy again. I have been on the internet for a good while today trying to find some answers. I came across a site that discussed "false primary amenorrhea" and Asherman's disease. I knew I had found the answers I was looking for. My problem now is that I don't want to go to the original gynecologist that performed the D & C and don't know if I could find anyone capable of helping me. Any suggestion? Thanks- April Quote Link to comment Share on other sites More sharing options...
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