I'm new, could really use some advice

I had a doctors appt yesterday and was informed that I needed a hysterectomy. Now All I have to do is decide weather or not to keep one ovary or none. If I keep one I will most likely still have pain when I ovulate, that sucks, but if I don't keep one I will go through surgically induced menopause which can be really bad in someone my age further down the road. I really hate making decisions like this. I honestly don't know what to do. There is a lot stacked against me either way! Especially because of my history of MS, FMS, bloodclots, and stroke. But the good news it that he said the hysterectomy may actually help me with the IBS because he thinks I may have developed some lesions and endometriosis that may have gone onto my colon and is compounding the problem. Especially since I got so much worse after haveing my appendix out last year. I am so confused it's not even funny. If any of you have had a hysterectomy at a young age I would really like your advice as to what you decided about ovaries, did you keep them and have same pain or did you have them both taken out and have other problems later? I feel like screaming right now. I don't want this decision! I've been reading up on it all and keep finding reasons to hve them both removed, but then is contradicted the next page saying at a young age you should keep at least one to prevent major problems later. Please any advice or thoughts would be appreciated.

Oops, sorry I forgot to mention my age. I am 29 years old. Will be 30 August 20th. He feels I need the hysterectomy because basically all other options are not available to me. I have had blood clots in my leg and have had 2 strokes. Because of that I cannot go on any type of birth control to help regulate me. Also because of the MS and fibromyalgia it's risky for other therapies. He felt that a hysterectomy would be my best choice based on all my history. But he wanted me to think long and hard about my ovaries because while he wants at least one out (because covered with cysts and gives me the most pain) he wanted me to be aware of the risk involved both ways, if kept it, higher risk of ovarian cancer, more pain from one ovary compensating for the loss of the other one, and also that it may not even continue to function. He said that it could always be removed later during laparoscopy if needed. then the risk of removing both for me is since I have had the strokes I need to be extremely cautious with HRT because artificial estrogen could cause another stroke, raises the risk by 10-15% from surgical menopause. In a normal person that would mean they have a 10-15% chance of a stroke. But since I've already had 2 I already have a 80-90% chance, now add the 10-15 and I'm basically screwed. LOL. Also without it there is a higher incident of abdominal cancer. Now see why I am confused? Either way I'm taking a huge risk.

Sorry I dont have any advice for you as I am in the almost same condition as you are but I have endo and I am 28 and I am getting ready to have a hyst. ME and my dr havent decided onwhat is going to go yet but the way she talks she is going to take both overies. So know I am in that place as you are. But I just wanted to let you kno wthat you are not alone . And I am sure the sweet ladies here could help you in many ways they have done so much for me just on educating my self which actualty surprised my dr a little . If you ever need to just vent or talk you can always e- mail me.

Your plate sure is overloaded sweetie! There are way too many issues involved for you to be making this decision alone. If you are wondering about whether to lose one or both ovaries, whether or not you need HRT, as well as the ramifications specifically because of your strokes then it sure seems to me that your ob/gyn and your heart specialist should be confering and offering you what options are available.

Write your questions down, call one or both or three (however many doctors you have) and ask if they are confering and what are their suggestions.

I have known a couple ladies who had their ovaries out in their 20's. They did fine on HRT, however, they did not have the various medical problems you indicate. If your ovaries are out, you would probably only need estrogen. You need to ask your doctors specific questions.
All my best to you in your journey to make a decision.
Hugs,
Miranda

That's a really hard decision to make, I'm almost in the same boat. I'm 32, and am scheduled for a TAH/BSO on June 25th. I also have endo, which can return after a hyst because it feeds off the estrogen from the ovaries. I also have a family history of ovarian cancer, and with that plus the endo thing, I decided to have both ovaries removed.

With your history of blood clots, though, it is a harder decision, since as you said, the HRT can be a problem. I don't know what I would do in your situation, but I'm sending hugs your way. If I were you, I might keep one and see how it goes, but only you can make that decision for you, with the help of your doctor.

Hugs,
Shelia

Hi!

I'm no expert here, just had a hysterectomy and lost my remaining ovary. I'm 43 so not as young as you.
From what I have heard there are pros and cons either way from keeping or removing ovaries. Your doctor (and your own wishes) are your best advise. I had no choice as I lost both ovaries eventually from them hemmoraging into themselves. At my age it would have been pretty useless to try to keep it anyway as menopause was less than 10 years away. In your case with your complications I would certainly discuss the reasons for removing them as well is side effects from leaving them Your family and personal history will help you decide which road to travel. I wish you the best in making the decision. I know from my experience (I'm 2 weeks post) that once I had all the information and bounced it around in my head for a couple of weeks, I agreed with my Dr and was ok with it. This whole thing is such a life altering event. In my case its for the better!
I pray it is the same for you!

Sounds like your doctor really cares about you and is very much concerned with the outcome of your decision. In addition to your stroke concerns which definately takes precedence here, if you have hyper sensitivity to hormones already, I can see why you're reluctant to take them after a tah/bso.

Here's my thoughts on what you have listed:


Removing the ovaries: : (you really have two things to think about here)

Increased risk of ovarian cancer: Unless you have a family history or personal history with ovarian cancer - the risk is really no higher. Why remove healthy tissue just because it might become cancerous?

Increased risk of endometriosis returning: Make sure the doctor removes the endometriosis at the time of surgery --sounds like you have a good doc so discuss this with him/her. See what he thinks about removing the ovary due to this risk and se what he/she can do to cut that risk if you leave it in (which may be nothing other than removing the endo --if that's possible)

HRT Issues: Since you're 29 NOT taking hrt has some serious issues all it's own (osteoporosis and heart disease) but it's not unheard of (cancer patients). What did your doctor say about that?

I guess my overall question here is what's your major complaint? Pain? Pain from cysts, pelvic pain in general, or ibs symptoms?

If it's just pain from cysts (which I don't mean to minimize here) and the one ovary is affected could you go that route and have only the one ovary removed? Like he said, it can come out later. I lived for several years with only one ovary and didn't notice a difference. The only thing with that is the endometriosis...did he seem to think it was a primary factor in the IBS? IBS can also be treated with certain anti depressants (of course with your history and all the other meds your on...your doctor would know best here).

I'm not a doctor and even if I could make this decision for you...I wouldn't -- it's a toughie. What you're faced with here is finding out as much as you can, then the only advice I can give you is to go with your gut (no pun intended). You're going to have to take a leap of faith here. You know your body better than anyone else. You've been given some good, accurate facts by your doctor. This is the geekiest thing in the world, but it works...make a pro/con ovary removal list -- list all the facts -- then how you feel about them. Now you need to soak it all in, find a quiet place, pray on it, and then take that leap of faith that you know in your gut to be true for YOU. I wish you luck...I know I've been of no help here, but hopefully just having someone post who can help you "kick it around" has helped some....

Hi Welcome to Hister Sisters. You need information and support and you will find it here - or be pointed towards places where you will find what you need.

There isn't much I can help you with, since I had my hyst for fibroids when I was 44 yo.

One thing I wanted to say is that I agree with Adrite: having an hysterectomy and keeping the ovaries, or one ovary, doesn't increase the risks of ovarian cancer. If you do not have a family history of ovarian cancer, then it really does not constitute that high of a risk for you.

I also thought that, given the many issues you are dealing with, it might be a good idea to have a conference with your many specialists in order to discuss the best options for you. I know that doctors will do that, since my father's cardiologist organized such a conference when he was exploring the possibilities of a heart transplant.

Best of luck

Are you on any blood thinners as a result of the strokes. And may I ask the cause of the strokes? Just wondering because my mom was on blood thinners for a clotting problem and had a breast reduction and did great! Unfortunatly, 2 years later she had a stroke and is now handicapped. Her stroke was caused by plaque breaking off in her carotid artery. That is why I am asking.

{{{{{{{{{{{hugs}}}}}}}}}}

kaatie

Hi, thank you all for responding. Sorry it took so long to get back to you but my six year old daugter was admitted into the hospital Friday night. She took precedence over the computer. She's ok and home, she even went to school today.

Anyway, saw my regular doc today and told him what happened at the gyno. I hadn't been tothe gyno for 4 years because my doc was more than capable to treat me. but now things got worse and he decided that I should go back and bring my records with me. Records, exam and ultrasound is what prompted the hyst. My doc today went over the notes from gyno and then had his other partner who is also a part time gyno look me over and the notes and they agree with hyst. But he couldn't offer me any advice about the ovary. He did say however that if I had it removed I could take natural hormones and that it would significantly reduce the risks, and also he would watch me closely along with my gyno for any problems so anything would be caught really early. Monthly paps for 2 years, bloodwork twice a month, and other stuff. So that eased my mind quite a bit.

In answer about the strokes: I had a stroke 4 months after my son was born, and another 4 months after my daughter was born. The believe they had to do with blood clots forming while pregnant because the blood thickens, and takes about 4-5 months to thin out again and the clot broke through in my brain. I was very lucky though. and No I am not on blood thinners because I am severely allergic to aspirin and one of the other ingredients to blood thinners. When they found a clot in a deep vein a couple years ago I had to go to the ER every 12 hours for 4 days and have a shot of lovenex in my abdomen. talk about painful!

So I am going to call my gyno, ask if they plan on removing my cervix when they do the hysto. If no then I will probably keep the ovary, but if yes there really is no reason to keep it since the ovary feeds off the cervix to function mostly. I will let you all know what is going on and when I am scheduled. Hopefully not to far away since if I do have it removed I don't want to wait and go through trying to regulate hormones to help menopause in the middle of summer! plus I would like to go to the beach this year without pain.

Again, thank you all so much for your kind words and support, really helps me a lot to know that I'm not alone.

Sandi

Just another question you should pose to your doc. If you can't take birth control because of the hormones and your blood clot, why will you be able to take HRT which is hormones? I just found out I have a genetic clotting factor and cannot take hormonal birth control or HRT. I am praying I can keep at least one ovary. They are ok as far as i know except for a cyst on the right ovary that burst a while ago.

Kim