Had double oopherectomy, not sure if uterus should be removed.

Hi Ladies!

My name is Leslie. I just returned from having emergency surgery to remove my left (and last) ovary due to a very painful dermoid cyst that was causing torsion. I am now 32 years of age and childless. I'm feeling ok so far, though this surgery has been hard to recover from so far. I'm feeling some grief over the loss of my fertility but it's in this far off, kind of abstract way, like it isn't real yet or something. I'm also afraid of menopausal symptoms at my young age.

They want me to come in in two weeks to discuss another surgery to remove my uterus and possibly cervix. I have already had 4 abdominal surgeries, and the thought exhausts me! They tell me that it is important though, because it will make HRT hard with my uterus in place.

I am currently on a birth control pill for my HRT, ironically, the same pill I was taking for birth control before my surgery. So far I have not had any hot flashes or other issues, but it has only been 3 days now. I was told there is not much I can take, as I am young and still have my uterus.

My story starts a long time ago, when I was 18. I went to the ER with extreme pain on the right side, thinking it was my appendix. It was a dermoid cyst the size of a melon surrounding my right ovary. I also had one the size of a walnut on my left. They removed the right ovary but left the tube and the cyst from the left. Later, in 2003, I had laproscopic surgery to clean up some adhesions and endometreosis. In 2005, my dermoid had returned on my left ovary and they removed it, along with half of the ovary. Things were going ok until a few days ago when I again reported to the ER with excruciating pain. My dermoid was back again and causing torsion. They removed my left ovary, and both tubes in an emergency surgery.

In a way, it is a relief. I have lived in constant pain to a greater or lesser extent for my entire adult life. Though still sore from surgery, I already feel better than I can remember. Sorry for such a long post, I wanted to share my experiences as I'm hoping to meet other women who have dealt with similar issues so that we can support eachother and I can learn from you! Thanks for listening!

We could be crummy ovary sisters! I had my last, my left one, removed in November 2010. I'm 42. I have one amazing daughter who I adopted from China. My infertility was determined when I had emergency surgery to remove my right ovary. A baseball sized cyst, torsion, you know the story

I've read your post several times and.....why would you remove your uterus and cervix if you don't want to?

I have my uterus and cervix and I take HRT, both estrogen AND progesterone to protect my uterus. The hormone thing has been tough, but it had zip to do with my uterus. Hormonal balance is just....hard, whether youve got some of your girly bits or not.

If it's a concern over endo, I've been able to control that aspect very well with progesterone. Remarkably well even.

I'm really of the 'let's not remove perfectly healthy organs' school of thought. Get a second opinion. TRUST YOUR INSTINCTS. You don't HAVE to have it removed simply because you no longer have ovaries.

I'm glad you said that, because that was how I was thinking too. I've read where alot of sexual function for women relies on the uterus contractions and such. I'm depressed enough about my complete and total lack of a sex drive. If I can get the motor running, I want it to feel as much the same as possible. DH has been understanding so far, but it makes me sad that he has to be. This shouldn't have happened to us this young. Blah. I didn;t have any signs of endo when they did my surgery, so I'm confused about why they are so keen to give me a hysterectomy. They said if I have no ovaries there is no reason to leave it in. I guess bladder support isn't important! LOL

There are risks with having a uterus and no ovaries, hence come doctors will recommend a hysterectomy if both ovaries have been removed. If the endometrium builds up too much because the progesterone levels are not quite right, one is at risk for endometrial cancer.

Other doctors feel that one should not remove health organs simply to prevent what "might" happen as our body is designed to work together and a missing organ changes the whole picture, even if only by a little. There several risks to a hysterectomy so the decision to have one should never be made lightly.

There are ladies who choose to keep their uterus and work closely with their doctors to try to find the right HRT balance to provide symptom relief, and allow for the monthly shed of the endometrium to prevent the unsafe build up.

Only you and your doctors can determine your personal risks and if this is the best option for you.

If you have not done so, get a second opinion.

Also, even if endometriosis is in the picture, removing the uterus would not be a cure.

S

Thanks Weiser. It gives me some more to think about. I'm on birth control pills to keep me even for 3 weeks a month and then I take the blank pills to have a period. I'm not out of surgery long enough to go through one of these periods, but I worry that it will also mean a week of menopausal symptoms. This whole situation has me rather upset in general.

I agree with getting a second opinion to help you sort it out. Then keep in mind you can think about it for a while before you decide, since it's not an emergency. You can also consider keeping your cervix as part of the discussion, if that would be appropriate in your case. It's all a lot to think about on top of already having had surgery. I'm sorry you are having to deal with all this. Good luck making the decision right for you.

This is kind of off topic, but the libido thing, for me when I was on BCP, I didn't have much either. That with the emotional and stressful experience you've just had and I think what you're experiencing is completely normal. Give it some time and be patient and kind to yourself. Once things settle down and some of this weight is lifted, I think you'll find it easier to get your mojo back

Svandyk - I really hope so. I'm struggling not to feel like I;m going to shrivel up into an old woman now, and I wanted children, so that is whole other story. Part of me wants to keep my uterus in order to carry with a donor egg from a first cousin who looks alot like me. It'd be the closest thing I can have now to my own child. I have alot to think about.

I've been having period like bleeding ever since the surgery now. Almost 2 weeks. I'm really concerned that I'm just going to have a period non stop now until I hve the uterus out! If it's not one thing, it's another!

I know how you're feeling. It can be all consuming. But do me a favor, ok? Right now, just think of your next step to being well. Whether that be surgery again, or not. Switching your hormones, or not. Take one step at a time.

Remind yourself that there are many, many ways to have a family and when the time comes, you'll explore all those options, but right now, you're going to work on getting yourself healthy and happy.

You don't have to solve everything right now. I know it hurts, but it will get easier. You're in a cave, but I promise you, you will see the sun again.

If you need to talk, I'm here,you're not alone - and call me Stephanie

Thanks Stephanie. LOL You know, you're absolutely right. I am freaking out alittle and trying to look at the big mural sized picture in five years, when I really need to figure out how to see a single brushstroke as it were. I think I'm just going to try to get on with my life and see how I feel. I have loads of newfound energy and hopefully it'll continue. Surgery again is not something I really want to even think about for a long time. Thanks for the wakeup call!