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Loss of Ovaries Loss of Ovaries

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Unread 03-24-2005, 07:30 PM
Loss of Ovaries

Wanting to understand more about your experiences if you have endured the loss of your ovaries. I know it is such a significant decision with no turning back. I am really scared. I am only 30 years old and I am terrified of what may happen if I must endure this surgery. There is such uncertainty yet I know I can't go on in the pain that I have. That's not right either. It is just so hard.

~What has been your experience?
~My doctor has suggested removing one and leaving the other, anyone else experience this? Did the remaining ovary then fail? My doctor has said that often happens.
~Are you taking hormone replacement? If so how is it for you?
~My surgeon wants me to see the other Gyn in the office, kind of like a second opinion. I appreciate that, as I think it is a good idea and shows that she is really putting a lot of thought into this. What do you think about getting the opinion of another Specialist?

There is a large cyst on the left ovary, small on the right, extensively dilated abnormal left ovarian vein (despite trial of embolization) and fluid in the pelvic cavity. I have had ongoing problems with collections of fluid in the pelvis since my LAVH. I also have severe hypervascularization of the peritoneum. The symptoms that I have now are extreme pain so that I can not stand up straight or walk, and I have such severe vomiting and chills from the pain. I can not eat, and have not for the past 6 days. It is the most challenging experience with pain that I have endured. It is really tough, but I am trying to keep trusting this will not last forever. The surgery would be one year past my LAVH.

Truly anything that you can share would be most appreciated.

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Unread 03-25-2005, 07:24 AM
Loss of Ovaries

Hi blessings,
I was told by my Dr. because of my age she did not want to take my ovaries if possible. She said the hormones were needed, so she wanted me to have that. However just because they leave an ovary doesn't mean it will work or continue to work. I found out that my TAH/RSO was really something different. She said she left what she thought was a piece of ovary (couldn't get it all out) but disconnected the blood supply, so she expected me to be in surgical menopause immediately after surgery- it didn't happen that way. I had no symptoms of flashes or anything. She ran tests and I am getting enuf hormones from somewhere. (could be the piece of ovary found its own blood source) She isn't sure, but said so far I am lucky. Prior to surgery, I told her if you have to give me a hysterectomy ( She was trying to remove cysts and fibroids only because I have no children) take it all out. I did not want to have to come back for anything inthe future. Well, things did not turn out as I hoped, but I am not complaining.
This is a call only you and your Drs guidance can make.

As for getting a second opinion, I had so much confidance in my Dr. If I was unsure for any single reason, I certainly would have! And the fact your Dr is recommending it, maybe you should. It's a wonderful feeling being rolled into surgery with the utmost confidence in the Drs who are working on you. Don't go in with doubts.
So luckily, at this time I am not on any HRT. I have issues with breast cancer in my family (2 sisters had it) so I will have to deal with that when I get there. Some people never need anything.

I hope this was of some help to you.
Best wishes to you in whatever you do!
Unread 03-25-2005, 08:56 AM
Thank You For Your Reply

Thank you for sharing your story. Yes, it certainly is a decision with much to consider. The magnitude of it is very evident in my mind and my heart. I am wondering if perhaps the choice will become so obvious as the days continue and I am still in so much pain? My surgeon seems to feel the same, that perhaps the answer will be so obvious by how I am doing. Still, it is never an easy thing.

I am glad that I have a compassionate, skilled and thoughtful doctor when it comes to my care. I know that she is deeply considering what is best as I am. I am glad that there is someone else in the office whom she respects and trusts enough to share this with and ask her discernment also.

I don't think that I would go for a second opinion on my own as I trust my doctor very much having gone through so much with her, but I know that she never makes such a final decision without being sure that it is entirely what is not only necessary but what is best. I had a friend that had the same surgeon as I do and when it came time to decide whether she would remove her ovaries she did the same thing and referred to the same Specialist. I am impressed that she would do the same for me now that I am faced with the decision myself.

I think right now there is a wait and see approach, but I don't expect that it will go on very long. I continue to try to learn as much as I can about my options and search my heart. The goal is to remove the left ovary if surgery is to proceed and leave the right one, but as you have shared there are truly no guarantees how things will go. Perhaps I will have many years of hormonal function and balance from the one remaining, or perhaps it will fail in response to all that has happened within. I am trying to not dwell on the uncertainty, but to trust my doctor, in myself and to know that there is always hope.

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Unread 03-25-2005, 09:25 AM
Loss of Ovaries

My heart aches for you. I cannot believe all you have gone through, and still have more to go through. You are one strong woman to be admired!!

Just a thought on your fluid in the pelvis, which I am sure your doctor must have thought of. I am wondering why they dont put drains in?? But then I wonder about the risk of infection considering your history.....Do they know why the fluid seems to always come back??

I will definitely say a prayer for you. Hang in there, you have an amazing doctor and someday she will find a way to completely heal you, I have faith!!

Hugs to you
Unread 03-25-2005, 11:39 AM
Loss of Ovaries

Hi, Blessings.

I'm 44 but had my hysterectomy at age 42 with ovaries removed. I have had little issues as a result and am currently on the Vivelle Dot .01 mg. It has worked well for me and I've had no issues with loss of libido, hot flashes, etc. My issues are with adhesions and, even though I have no issues as I mentioned above, I am researching more on hormones because I believe there may be more to it than a basic "one size fits all" hormone patch. Once I feel that I've done enough research to be somewhat informed, I'll go to my doctor and partner with her on what to do next. I'm so sorry for all you've been through. Please hang in there and know we are here for you. You are a trooper. Also, as someone else mentioned earlier just because the surgeon doesn't take your ovaries doesn't mean they don't ultimately shut down on their own anyway just do to loss of blood supply, etc. You just have to do what is right for you and what will get you the best quality of life. The light at the end of that tunnel is a little hard for you to see right now but it will come. Stay strong.
Unread 03-25-2005, 11:57 AM
Loss of Ovaries

I wasn't able to keep the 1/2 of an ovary I had left at the time of my hyst so don't have personal experience on the issue of keeping them. Here's an interesting thread for you to read: Old Ovaries: Still of value?

Good luck with your decision. I would suggest that you visit the The Hormone Jungle Message Board to see what some women go through trying to find hormonal balance. We are all different, so you may not have these problems, but I think it's good to gather all the information that you can. Hormones are not one size fits all.

Unread 03-25-2005, 12:15 PM

This morning I woke up and found there was brown/red bleeding when I went to the washroom. It was coming from up inside. My surgeon is away right now and said that if there were any concerns I could page the doctor on call with whom she works. I debated a long time before I found the courage to phone, but I thought the bleeding was odd and wanted to ask the question. I am almost 2 weeks post-laparoscopy, no uterus (LAVH last year), and both ovaries still in place. My doctor also wanted me to be seen by this doctor later in the week to see how I was doing. She gave me an appointment.

When the doctor called back it was evident that I was going to be put in my place. She said that it was nothing to worry about unless that I was gushing blood. Not only that though, but she was very belittling and her explanations did not make sense. She said that when I had my surgery almost 2 weeks ago that there was a cyst on the left ovary and that I was ovulating. But my doctor when she did an ultrasound this week at a week and a half post-op said that I was ovulating. I don't imagine that I could have ovulated repeatedly or for that long. And the pain that I have been having has gone on for 7 days now, and my doctor said that it is highly unlikely that is just caused by ovulation. Then the doctor tried to sight that perhaps I was hypersensitive to the pain given my history and that nerves were responding...but I had a presacral neurectomy and I don't feel pain there. Ahhh! When I asked if I should still come and see her this week she didn't know anything about it. She started to question and scold me as to who told me I could come and when. Oh my.

This is exactly what I feared most. I worry so much about asking questions or asking for help when something doesn't seem right. I just thought it was very odd to have bleeding at almost 2 weeks post-op when I didn't have any before. I wanted to ask the question, but now I feel like I should never have. It seems I only served to make this doctor on call mad and bothered. I am worried now that my doctor will be angry with me for having asked too. I am not keen on going to see the other doctor now, and think perhaps it best if I just wait until my own comes back from holidays. I am so scared that I did the wrong thing and yet they always say that you should ask. I am glad that my doctor has been understanding and seems to care, but now with the opinion of the other doctor I worry that may change.

Unread 03-25-2005, 12:48 PM
Re: Update

Originally posted by blessings
I had a presacral neurectomy and I don't feel pain there.
I had my ilingual (sp?) nerves removed from both my right and left side (not sure if that's the same as a presacral neurectomy) but still can feel some pain there. My doctor told me that they can never actually remove the nerve, what they do is snip the damaged part of the nerves and that the nerves can regenerate or continue to give off signals. Also, as we're so used to being in pain, where we feel the pain may not necessarily be where it is coming from, that is what they call referred pain.

One thing I have also found is that with each additional surgery I have had I have incurred more pain and it has taken be much longer to recover.

I've been on this Road for over 5 years, so I know it's not easy. If you feel that your doctor isn't being helpful and is dismissing your pain I would seek a second opinion.

Unread 03-25-2005, 12:59 PM
In Reply

Thank you for your kind reply.

I really do trust and feel comfortable with my surgeon. It is the experience of seeking help from the doctor on call that I don't. I guess I was just shocked with the response that I got upon asking about the bleeding, as it took a lot of courage to even phone. My doctor reassured me that I could certainly call if there was anything and so I did. In her absence there wasn't really any other option. I guess I just feel really bad that the other doctor thought it so insignificant and was so cross acting when I asked about the bleeding. I think I will just wait for my doctor to return and see her as opposed to seeing the doctor with whom I spoke today. I don't feel this way about my own doctor and feel very comfortable with her. Perhaps the doctor on call just did not understand my history nor me as a patient because of course she does not know me. I guess I just had hoped that something like this would not happen and I wouldn't be met with such a reaction when I needed help. I am hopeful that the bleeding will stop and perhaps the medicine will be successful in decreasing the size of the cyst. By any account I think that I will just hold on and wait to discuss things further when my own doctor is back in a week or so. I don't think it is something that my doctor nor I will make a quick decision about one way or another.

Unread 03-25-2005, 01:06 PM
Cyst on ovary?


You mentioned that they found a cyst on your ovary when they did surgery - - why did they not remove the cyst at that time? I may be igorant of how things like that work -- maybe if you were ovulating at the time they couldn't take it off? That part just didn't make sense to me and I wondered if they explained it to you.

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