zuzu23
08-02-2005, 03:14 AM
Well, with a long SIGH, I guess I should post a question here finally. I was dx'd with Endometriosis March of '04. I'm a 26 year-old woman who has two kids, both boys :) , but have always wanted a little daughter as long back as I can remember:(. It's to the point where I actually feel like it's so WRONG if I never do have one. But I feel I must resign myself to the fact that I probably will need a hysterectomy soon.
The endo. has been causing me DAILY pain for almost 1.5 years straight now. Supposedly, some women only experience pain during the periods, etc. Well, I don't. As a teenager, maybe it was only then, but now it's almost every single day of my life. I've been having to use painkillers since March of last year.
Problem is, I also have a bleeding disorder, and my hematologists strongly advise against any procedure half as bad as a hysterectomy. :nono: To the point wher they have me scared. But the biggest problem, I guess, is that I don't feel ready for a hysterectomy. I'm not ready to rule out ever having another child one day, boy OR girl. I love kids; my boys are the light of my life!!
I've been to 2 specialists, tried the birth control thing, Lupron, etc. Nothing has helped too much. :(:( My doc's are saying the hysterectomy's the ONLY answer. Last week, when I went to get more painkillers, my doc wasn't even going to give them to me! (And just to set the record straight, I'm not a person abusing drugs; I'm actually a very productive person when the pain is being managed as it has been, but without any relief from it, it is almost crippling at times.)
Because of the blood disorder, I can't take aspirin or ibuprofen or anything else that thins out blood, so I'm kind out short of answers.
What I really need your help with is this: How did you all make the decision to have a hysterectomy?? How do you KNOW it's the right thing to do? I'm so sure that if I do, I'll regret it before I even go into the O.R. What can I do to help me go through the decision making process???
The endo. has been causing me DAILY pain for almost 1.5 years straight now. Supposedly, some women only experience pain during the periods, etc. Well, I don't. As a teenager, maybe it was only then, but now it's almost every single day of my life. I've been having to use painkillers since March of last year.
Problem is, I also have a bleeding disorder, and my hematologists strongly advise against any procedure half as bad as a hysterectomy. :nono: To the point wher they have me scared. But the biggest problem, I guess, is that I don't feel ready for a hysterectomy. I'm not ready to rule out ever having another child one day, boy OR girl. I love kids; my boys are the light of my life!!
I've been to 2 specialists, tried the birth control thing, Lupron, etc. Nothing has helped too much. :(:( My doc's are saying the hysterectomy's the ONLY answer. Last week, when I went to get more painkillers, my doc wasn't even going to give them to me! (And just to set the record straight, I'm not a person abusing drugs; I'm actually a very productive person when the pain is being managed as it has been, but without any relief from it, it is almost crippling at times.)
Because of the blood disorder, I can't take aspirin or ibuprofen or anything else that thins out blood, so I'm kind out short of answers.
What I really need your help with is this: How did you all make the decision to have a hysterectomy?? How do you KNOW it's the right thing to do? I'm so sure that if I do, I'll regret it before I even go into the O.R. What can I do to help me go through the decision making process???
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kerry1
08-02-2005, 08:56 AM
You really need to think this through!!!
I have decided to have a hysterectomy because 1) I'm 46, 2) have decided against children, 3) have heavy periods and large fibroids, 4) have serious anemia, and 5) have kidney disease that contributes to the anemia.
Lupron is a risky drug. I refuse to take it myself. I don't know about your bleeding disorder - that's a wrench in the works, for sure. But hysterectomy isn't always the "only answer". You're still young and you still want a girl. Personally, I would be overjoyed with a few healthy boys, but if you still want a girl you shouldn't give up yet! Do some online research about your disorders and that way at least you'll have questions, if not answers, about the best possible treatment.
I have decided to have a hysterectomy because 1) I'm 46, 2) have decided against children, 3) have heavy periods and large fibroids, 4) have serious anemia, and 5) have kidney disease that contributes to the anemia.
Lupron is a risky drug. I refuse to take it myself. I don't know about your bleeding disorder - that's a wrench in the works, for sure. But hysterectomy isn't always the "only answer". You're still young and you still want a girl. Personally, I would be overjoyed with a few healthy boys, but if you still want a girl you shouldn't give up yet! Do some online research about your disorders and that way at least you'll have questions, if not answers, about the best possible treatment.
ktee_uk
08-02-2005, 03:04 PM
Dear zuzu23
Thought I could chime in as I have similar symptoms to you. Have had endo and adeno for years with really bad pain to the point where i would faint. My cycles extended and I only had about 7 good days a month where I had little or no pain/bleeding. I really do sympathise with you ..... the pain is excrutiating and went from my pubic area down to my knees.
I also have a blood disorder ...... I am a carrier of haemophilia gene and one of those unfortunates who also display symptoms of the desease such as easy bruising, bleeding gums and bleeding into joints. I also have a reduced von Willebrand level which is similar to heamaphilia (but different, my haematologiest did explain it to me but it went waaaay over my head) . Any type of surgery naturally needs a lot of thought and preparation by me and my doctors. It is however, in my case, relatively easily resolved through the use of DDAVP which is a drug that they give me through an IV before, during and after surgery.
My gyno was really really reluctant to do the op because of the increased risk but my haematologist worked closely with him and they decided everything was ready to go. In the event I was ok and did not even feel too drained after the surgery. Tired yes, drained no.
I personally feel that there is a link between blood disorders and gyno/bleeding/endo probs. There are some studies on it but have found nothing really conclusive. I have also read that women who use oral birth control pills from and early age and for more than 10 years have increased risk of cervical erosion and endo. I would be interested to know if anyone has anymore info on this topic.
regards to all and good luck with your decision.
ktee
Thought I could chime in as I have similar symptoms to you. Have had endo and adeno for years with really bad pain to the point where i would faint. My cycles extended and I only had about 7 good days a month where I had little or no pain/bleeding. I really do sympathise with you ..... the pain is excrutiating and went from my pubic area down to my knees.
I also have a blood disorder ...... I am a carrier of haemophilia gene and one of those unfortunates who also display symptoms of the desease such as easy bruising, bleeding gums and bleeding into joints. I also have a reduced von Willebrand level which is similar to heamaphilia (but different, my haematologiest did explain it to me but it went waaaay over my head) . Any type of surgery naturally needs a lot of thought and preparation by me and my doctors. It is however, in my case, relatively easily resolved through the use of DDAVP which is a drug that they give me through an IV before, during and after surgery.
My gyno was really really reluctant to do the op because of the increased risk but my haematologist worked closely with him and they decided everything was ready to go. In the event I was ok and did not even feel too drained after the surgery. Tired yes, drained no.
I personally feel that there is a link between blood disorders and gyno/bleeding/endo probs. There are some studies on it but have found nothing really conclusive. I have also read that women who use oral birth control pills from and early age and for more than 10 years have increased risk of cervical erosion and endo. I would be interested to know if anyone has anymore info on this topic.
regards to all and good luck with your decision.
ktee
zuzu23
08-02-2005, 04:56 PM
Ktee- I also have von Willebrands! That's the blood disorder I was referring to. Mine is Type 1, but does not very often respond to the DDAVP (which, btw, I've used in every form possible many times.) Unfortunately, even if we do get THAT hurdle crossed, I do not WANT the hysterectomy. :( Just don't see ANY other options to try that I haven't already tried. :(
Thank-you to the other poster as well. I am very grateful and lucky to have the 2 boys I DO have, I know. I don't mean to sound ungrateful, it's just that it feels so wrong in my heart to have this right now.
I just found out that my appt. with the doc who's going to expect me to have my mind made up is not until the end of Sept. so I guess that's one thing. Just so frustrating...I don't even know where to start with the decision making process. Just feel so sad right now.
Thanks all.
Zuzu
Thank-you to the other poster as well. I am very grateful and lucky to have the 2 boys I DO have, I know. I don't mean to sound ungrateful, it's just that it feels so wrong in my heart to have this right now.
I just found out that my appt. with the doc who's going to expect me to have my mind made up is not until the end of Sept. so I guess that's one thing. Just so frustrating...I don't even know where to start with the decision making process. Just feel so sad right now.
Thanks all.
Zuzu
ktee_uk
08-03-2005, 03:36 AM
Dear zuzu
Im just glad to see you are taking the decision so seriously and giving so much thought. For some women the decision is easier, but in your case you sound like to really want to have more children so your choice is so much harder. Either way, it is tough on your body. To have a child whilst suffering a blood disorder is an even bigger hurdle i would imagine, so congrats on making it with two of them.
btw, do they use any other drugs apart from the ddavp? it works for me but id like to know about alternatives, just in case.
good luck
ktee
Im just glad to see you are taking the decision so seriously and giving so much thought. For some women the decision is easier, but in your case you sound like to really want to have more children so your choice is so much harder. Either way, it is tough on your body. To have a child whilst suffering a blood disorder is an even bigger hurdle i would imagine, so congrats on making it with two of them.
btw, do they use any other drugs apart from the ddavp? it works for me but id like to know about alternatives, just in case.
good luck
ktee
zuzu23
08-03-2005, 06:02 PM
Ktee,
For my bleeding episodes (and every cycle) I use the DDAVP as well as pills called Cyclokapron. I have to take a lot of those- about 9/day for 7 days. The only other alternative as far as I know is Factor 8 blood products- in life or death situations.
For my bleeding episodes (and every cycle) I use the DDAVP as well as pills called Cyclokapron. I have to take a lot of those- about 9/day for 7 days. The only other alternative as far as I know is Factor 8 blood products- in life or death situations.
hrtofluv
08-22-2005, 11:12 AM
Zuzu,
I think you already have your decision - it's not time to think about a hysterectomy for you. Your desire to have more children is not going to subside - I know. Now I've got 10 years on you (37) and looking into a hysterectomy now since I have 2 kids (one boy and one girl). Although I would have loved to have more and I tried, both my husband and I decided 2 years ago that we were through (for other medical reasons). He has already had the big V 18 months ago, so I wouldn't have to go through another surgery, but even that was hard for me since I knew it was a final decision. Now I got the diagnosis of severe adeno in July and the reason why we had trouble getting number 3.
One thing to consider - have you had a complete thyroid panel done with FreeT3 and FreeT4 done (TSH levels alone are not enough anymore)? These levels if not within range can cause most of the symptoms you describe as well. I had seen relief from some of my symptoms with the right thyroid meds, but the last 6 months has really gone downhill - thus the hyster consideration.
I also have a platelet disorder (not vonWillebrands though) and right now my numbers are too low for surgery at this time. Forced to have 2 children naturally was not a piece of cake either (because the anesth. refused to give me an epidural with my numbers low - won't give one for anyone below 100,000). If I can get my numbers up, I plan on donating some blood prior to the surgery for possible transfusions. My sister and my husband are also going to donate on my behalf prior to surgery as well.
If you have ANY doubts - surgery should be put off.
I think you already have your decision - it's not time to think about a hysterectomy for you. Your desire to have more children is not going to subside - I know. Now I've got 10 years on you (37) and looking into a hysterectomy now since I have 2 kids (one boy and one girl). Although I would have loved to have more and I tried, both my husband and I decided 2 years ago that we were through (for other medical reasons). He has already had the big V 18 months ago, so I wouldn't have to go through another surgery, but even that was hard for me since I knew it was a final decision. Now I got the diagnosis of severe adeno in July and the reason why we had trouble getting number 3.
One thing to consider - have you had a complete thyroid panel done with FreeT3 and FreeT4 done (TSH levels alone are not enough anymore)? These levels if not within range can cause most of the symptoms you describe as well. I had seen relief from some of my symptoms with the right thyroid meds, but the last 6 months has really gone downhill - thus the hyster consideration.
I also have a platelet disorder (not vonWillebrands though) and right now my numbers are too low for surgery at this time. Forced to have 2 children naturally was not a piece of cake either (because the anesth. refused to give me an epidural with my numbers low - won't give one for anyone below 100,000). If I can get my numbers up, I plan on donating some blood prior to the surgery for possible transfusions. My sister and my husband are also going to donate on my behalf prior to surgery as well.
If you have ANY doubts - surgery should be put off.
daisy01
08-23-2005, 11:28 AM
I am lucky that i didnt have any form of blood disorder other than the anaemia due to heavy blood loss each month. I had my hysterctomy after avoiding it for many years. the way I saw it then was I would rather enjoy the children I had, rather than grieve for the ones I couldnt, if that makes sense!!!
As a hysterctomy is a permanant thing you really should do it when the time is right for you, unless you have a life threatening condition of course. once I made up my mind to have it done then it was fine. No depression, no regrets or anything. It was one of the best decisions I had ever made, but only because it was the right time for me.
take care
daisy
As a hysterctomy is a permanant thing you really should do it when the time is right for you, unless you have a life threatening condition of course. once I made up my mind to have it done then it was fine. No depression, no regrets or anything. It was one of the best decisions I had ever made, but only because it was the right time for me.
take care
daisy
gardenandcats
08-25-2005, 10:53 AM
Another thing to consider is many women can not conceive if they have severe enod.
nymommy
08-25-2005, 03:13 PM
Hi, I just came across this thread as I was browsing through the boards. I needed an emergency hysterectomy after my first child was born. My uterus wouldn't contract and almost bled to death so the hysterectomy was needed to save my life (I still have my ovaries). Anyway, I was so devastated to learn that I could no longer carry a child and that my daughter would never have a sibling. So, my husband and I decided to find a surrogate to carry a child for us. It certainly wasn't an easy choice for us and it isn't for everyone but if yu really want another child, it is an option for you. {removed} me if you ever wanted to talk about it. Good luck!