Facing Hysterectomy ASAP!
fighterdiva
Posts: 33 Member
I just spent the last couple of days in the hospital having blood transfusions because of my excessive bleeding. My hemoglobin dropped down to 5. Now, I am told that I have to have a hysterectomy asap, which is killing me because I so badly wanted to have a baby. Has anyone else experienced this?
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I haven't experienced it personally, but I have a friend who did. My heart and prayers are with you.0
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A hysterectomy for endometriosis? I think most extremely well researched doctors say that is not the right path. Not in this day. What about ablation? That is what is done currently for bleeding. Have you asked your doctors that?
I'm sorry you are suffering. Endometriosis is a curse. I wish you good health. Keep us posted.
Monica0 -
I am currently 29 and at the age of 26 I had a total hysterectomy. They removed my uterus, ovaries and curvix. I do have two gifts from God that we did rush to have because I was told I may not have children if I didn't. There are days I feel a little sorry for myself because of the changes my body has gone through as it doesn't seem quite fair. I am 60 years old internally. I don't think my friends truely understand what I have to go through and how my body is different than theirs. I can't go drop 5 pounds quickly anymore because now my body would rather work against me and store body fat, I have to actually work twice as hard than a normal person my age if I want to acheive weight loss. But that is ok, and I tell you why. Unless someone has lived with endometriosis, they will never understand the pain that you live with. I used to live off pain killers and IbProfin just to get through a day. What quality of life is that. Now, I live pain free. Even though I sometimes feel sorry for myself, I have to remember what kind of life I was living before. There are a few things that come along with the surgery. Hot flashes, night sweats, sexual issues..weight gain around the midsection, and I now have osteopenia. But again, pain..or no pain and all of those things are getting better as I go. If you have been on the Lupron injections, you probably experienced those things anyway. I have been hospitalized because of the excessive bleeding as well, and I had two different surgeries to remove scar tissue and adhesions around my organs. To me..it was worth it. Good luck with your choice as it is a life long choice. My endo was severe, so for less severe, there are probbaly a few more options to work with to hold off the surgery.0
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Thank you everyone!0
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I am currently 29 and at the age of 26 I had a total hysterectomy. They removed my uterus, ovaries and curvix. I do have two gifts from God that we did rush to have because I was told I may not have children if I didn't. There are days I feel a little sorry for myself because of the changes my body has gone through as it doesn't seem quite fair. I am 60 years old internally. I don't think my friends truely understand what I have to go through and how my body is different than theirs. I can't go drop 5 pounds quickly anymore because now my body would rather work against me and store body fat, I have to actually work twice as hard than a normal person my age if I want to acheive weight loss. But that is ok, and I tell you why. Unless someone has lived with endometriosis, they will never understand the pain that you live with. I used to live off pain killers and IbProfin just to get through a day. What quality of life is that. Now, I live pain free. Even though I sometimes feel sorry for myself, I have to remember what kind of life I was living before. There are a few things that come along with the surgery. Hot flashes, night sweats, sexual issues..weight gain around the midsection, and I now have osteopenia. But again, pain..or no pain and all of those things are getting better as I go. If you have been on the Lupron injections, you probably experienced those things anyway. I have been hospitalized because of the excessive bleeding as well, and I had two different surgeries to remove scar tissue and adhesions around my organs. To me..it was worth it. Good luck with your choice as it is a life long choice. My endo was severe, so for less severe, there are probbaly a few more options to work with to hold off the surgery.
I really appreciate this honest description. I not only have Endometriosis, but I also have Adenomya, a tumor in the lining of my uterus, Complex Hyperplasia with Atipia, which is pre-cancer. I have had 6 blood transfusions this year alone, and yes, there are days where Aleve is taken morning and nightly to cope. I have never had children, and wanted to so badly. In fact, when I found out how bad I was, it was when I went in to the doctor to try and get pregnant, and he told me that I didn't have a pregnancy issue, that I had a life or death issue. I tried every treatment offered, and yes, I went through Lupron injections in the very beginning along with Depo Provera injections, nothing worked long term. Yes, they did surgery a couple of times to remove scar tissue, yet I still wonder if there is something else out there that might help that I should hold out for. Crazy it sounds I know, but I really wanted to try and have a baby, but I guess I waited too late.0 -
Not crazy at all. If you have not yet found http://www.hystersisters.com, I really recommend checking it out. It is a great, supportive , informative community dealing with the medical and emotional aspects of hysterectomy. I'm sorry for your loss, and hope you will be pain-free and healthy again soon.0
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I am currently 42 years old, I have stage 4 endometriosis and have suffered with it for about 10 years. My husband and I have been married for about 3 years but have been trying to get pregnant for about 5 years. I have had 3 lapascopic procedures during the 10 years. The last one I had was in August of 2011 because I had a large mass on my uterus along with some other cysts. My doctor told me at that time that this would be a hal mary to see if I could get pregnant one last chance because my husband wanted to see if this would work. Within a matter of a month after the procedure and even on Lupron, my large mass came back. My husband and I were heartbroken. We had gone to see a fertility specialist but they are very costly. During this whole process, all I kept saying is that it is in Gods hands to have a child naturally. Because I have been in some much discomfort my doctor keeps tell me that it is time to have a total hysterectomy done that I can not live like this. And that god has other plans for us.
I have always wanted kids as long as I can remember. Just looking into my husband's eyes I can tell he is devasted. It hurts me some much deep inside. I have been struggling with this for the last couple weeks and I didn't even know this group was on here. It is nice to have a group of women that is also suffering with endometriosis and know how you feel.
I currently have my hysterectomy scheduled for Oct. 8th and I am so nervous. It is the hardest decision I have ever made and it just breaks my heart.0 -
I am currently 42 years old, I have stage 4 endometriosis and have suffered with it for about 10 years. My husband and I have been married for about 3 years but have been trying to get pregnant for about 5 years. I have had 3 lapascopic procedures during the 10 years. The last one I had was in August of 2011 because I had a large mass on my uterus along with some other cysts. My doctor told me at that time that this would be a hal mary to see if I could get pregnant one last chance because my husband wanted to see if this would work. Within a matter of a month after the procedure and even on Lupron, my large mass came back. My husband and I were heartbroken. We had gone to see a fertility specialist but they are very costly. During this whole process, all I kept saying is that it is in Gods hands to have a child naturally. Because I have been in some much discomfort my doctor keeps tell me that it is time to have a total hysterectomy done that I can not live like this. And that god has other plans for us.
I have always wanted kids as long as I can remember. Just looking into my husband's eyes I can tell he is devasted. It hurts me some much deep inside. I have been struggling with this for the last couple weeks and I didn't even know this group was on here. It is nice to have a group of women that is also suffering with endometriosis and know how you feel.
I currently have my hysterectomy scheduled for Oct. 8th and I am so nervous. It is the hardest decision I have ever made and it just breaks my heart.
It definitely is a very difficult decision, and I wish you luck on the 8th. My surgery last week was complicated, but I made it through, and I now realize that it was the best thing for me to do. I too wanted to be a mom soooo bad, and it seems since my surgery, I see nothing but pregnant women or lots of children. But I am okay with that, I still smile at it all, and am looking forward to finding out what God's plan is for me, because obviously, what I thought was my plan in life, what I was so sure was my life plan, wasn't.
I am recovering, and looking forward to being back to 100%, but the truth is, I haven been 100% since my battle with all of these issues began, so I don't really know what my 100% is, or who I am completely, but I guess finding that out will be part of my journey.0 -
Hi. I am going to be 44 in 2 weeks and had a LSH (Laprascopic Supracervical Hysterectomy) 3.5 years ago. It was the best thing I ever did for my health and well being. I suffered for years with endometriosis, pelvic fibroids, adenomyosis, and pelvic congestion syndrome, and finally had just had enough. I also have interstitial cystitis and pelvic floor dysfunction, which didn't help my symptoms.
If your issues are related to your uterus only, I would suggest a supracervical hysterectomy. This surgery removes your uterus only, and leaves your ovaries and cervic intact, thereby eliminating early menopause. This is what I chose.
Someone else mentioned hystersisters.com and I just wanted to confirm that it is a fabulous website, full of resources, and a wonderful supportive community of women who are going through the same issues. That website was my Godsend from the time I made the decision to have my surgery all the way through my recovery. I highly recommend you check it out.
Feel free to PM me if you have any questions. I'd be happy to offer any insight/support that I can.0 -
It has been a few months since I have been on this website. I was originally scheduled for my total hysterectomy in October
but had to get rescheduled until Jan 2. I am home recovering right now trying to get use to the changes. I have been using
Hystersisters and it is a great website. I have decided after I am pass this recovery that I am back to using this website
again. It had helped me before.
Thanks again for the replies!0 -
Many many hugs and positive thoughts going your way! How are you doing mentally and emotionally?0
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I has been a long journey with the new changes in my life and trying to adjust to them.
To reflect back I realize that the endo took over alot of my life. Having the extreme pain from
the endo and bleeding very heavily. I dont miss that at all.
I regret not being able to have children naturally but that was a decision that God made for me.
I pray to God every day to give me the strength to get through this life journey. Because he is the one
that knows my future.
Good luck to everybody who has to deal with this terrible disease.0 -
I'm much older than you 38. I also had endo and adenomyosis. On top of that I have IC. I was bleeding profusely and although never had to do transfusions the pain for me was unbearable. When my doctor did an exploratory surgery he found the adenomyosis and said my tissues were "juicy". Meaning every time he sutured an incision it would tear through the tissues. Even with all of this he recommended birth control pills to stop menstrual bleeding. He said hysterectomy is a cure but because I wanted more children we had plenty of time to postpone- like in my 40's-50's. I was 33 at this time. I had one and I do not regret it because I am out of excruciating pain. I begged him to perform an LAVH just a month after this original surgery. If I hadn't begged (I was in horrible pain) he never would have performed it. He's a wonderful surgeon and I trust him with my life.
My prayers for your healing physically and emotionally are with you!!0
