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PCOS Ovaries...HELP please PCOS Ovaries...HELP please

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  #1  
Unread 05-02-2002, 05:27 AM
PCOS Ovaries...HELP please

Ok, my nerves are setting in. I am going for my pre-op appointment on 8th May, with surgery set for 13th May.
I am 27years old, 3 kids and have suffered from pain for 13 years. I have PCOS, endo and adhesions (fibroids??? unsure) After a lap done in November to have my ovaries wedged, my Dr said I had "overactive" cancer cells in my uterus...is that bad???
My Dr. has left it up to me to decide whether to keep the ovaries in or take them out. I have been trying to find information on this but have not been able to find much.
My Dr said that if my ovaries were removed that he would put in a hormone implant whilst I was in surgery.
I think?? I am already having menopause symptoms..hot flushes, moody, weight gain (from pcos too) full of tears and extreme tirdness.
Would having my polycystic ovaries removed and getting an implant be benificial in my situation???

I was so sure that I just wanted it all out.. now I need some advise from others that have been down this path.
I felt so strong about my decision, now I think the nerves have hit hard and I just dont know what to do... one minute I am feeling good, the next I am crying like a baby.
I would really appreciate some advise and a shoulder to cry on (mine is soaked!!!)


God Bless Hystersisters

Trina
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  #2  
Unread 05-02-2002, 07:00 AM
PCOS Ovaries...HELP please

Trina,
I have severe endo, and ovary cyst that keep coming back. My doctor told me the ovaries will make the endo grow, even without a uterus. The endo can grow on other organs! So my ovaries are coming out! Ask your doctor about this and make a decision then.
Also, on this site I have foudn some great info. From the homepage, scroll down to the pull down windows. Look there for some answers.

Duff
  #3  
Unread 05-02-2002, 07:09 AM
PCOS Ovaries...HELP please

Having a family history of cancer, the C word is not good in my opinion.

I don't know what PCOS is, but see what you can find on it, education is power.

If you can keep your ovaries, that's great, but be aware they can shut down during surgery and it takes them a while to 'wake up', so you might get the menopausal symptoms even with them. Doc can give you temporary HRT to compensate until they start working again.

Being on HRT isn't bad though. So I take one more pill (I take an antidepressant and several herbals and vitamins). Let your doc know if the ovaries don't look good that it's up to him though. I wanted to keep mine but left it up to doc. When she got in there, she didn't have a choice either.

Best of luck to you, and keep us informed.
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  #4  
Unread 05-02-2002, 07:46 AM
PCOS Ovaries...HELP please

You sound just like me. I had my surgery 8 days ago. I had all the same symptoms, frequent cysts, endo, pelvic pain that was chronic for 8 years, I ended up having my ovaries out too. I can't tell you what I'll feel like later, but so far, so good. My father passed away last fall from cancer, so although my obgyn would not tell me what to do about the ovaries, she said it had to be totally my decision. My family practiioner suggested I have them out. Said that way won't have to have another surgery later and would be better for cancer risk. He's lived through all my chronic pain, so he knows me best.

So far I'm just taking oral estrogen, and doing okay. I am having a few symptoms, but its too early for me to tell if its the hormone or still recovery from surgery.

Good luck on your decision.
Laura
  #5  
Unread 05-02-2002, 11:13 AM
PCOS Ovaries...HELP please

(((Trina)))))
I suffered from pcos for nearly 15 years. I went through the weight gain, mood swings, irregular periods and the infertiliy problems as well.

I cannot tell you what to do but just let you know what I did. From my reading and god knows I did lots. I did find out that having a hysterectomy does not totally cure pcos. There is a great site called www.pcos.com I think that is it. If you click on the little purple search button on the top of the page here you can type in pcos and should get lots of info from this site as well.
I had decided to have my ovaries removed because of the risk of ovarian cancer for me ( several years of fertility drugs put me at great risk).

I am so happy that I did have them removed. The pathology reports did come back with precancer in them. I am 35 years old and on HRT, but compared to the alternative I would be facing in a couple of years I know it was the right decision for me.

No one can make this decision for you, you have do make it. I hope that I have not confused you in any way. My only advise is to get as much info as you can, knowledge is power. Ask as many questions of you gyn as you can. He should be able to answer them for you to help you in making your decision.

If you have any questions at all, please feel free to e-mail me or pm me. I will help any way that I can
Sending you many healing s
  #6  
Unread 05-02-2002, 11:16 AM
Hugs!

Hi, Trina! Here's a shoulder and a Sorry you are going through so much and not feeling well. I didn't have PCOS, but here is a past thread where ladies are talking about this. https://www.hystersisters.com/vb2/sho...highlight=pcos Some drs think that the ovaries really are not the cause of PCOS, that it is an endocrine problem throughout the whole body. So removing the ovaries may not "cure" this problem. There are Websites that go into detail about PCOS and perhaps you can get some more info from those. It really is a complicated disease!

As far as cancer cells in you uterus, your dr may mean that you have hyperplasia (overactive proliferation) of the endometrium with atypical cells which can develop into endometrial cancer. If they are actually cancer cells now, it probably would be a good thing to have the uterus removed, though some drs will try hormone therapy first. Endometrial cancer is a slow-growing cancer that usually does not spread if it is caught early. A hyst solves the problem and usually no chemotherapy is needed.

As far as the estrogen implant, I think it is used more in Australia than it is here. Someone has said it's harder to adjust your dose with an implant than a pill or patch. Sometimes it takes a few "trial and error" periods to find the right type and dose that makes you feel good. You can't really adjust an implant easily. HRT will help with your menopause symptoms, but it can be tricky.

So, it looks like you still have some more research to do and think about your decisions. I'm sorry things aren't more "cut and dried" about what you should do. If it was me, I would seek out another dr for a second opinion (maybe from a dr that specializes in PCOS) so that I would feel confident of what my best options were. Even if it means postponing your surgery for a few weeks, it might be worth it to feel sure of your decisions.

Come back for more s and shoulders to cry on when you feel the need. We'll be here to see you through this journey. Best wishes!
Ruthie
  #7  
Unread 05-02-2002, 05:21 PM
G'DAY

Thanks for the replies...I am not so teary this morning
I am now thinking along the lines of letting the Dr. decide once he is in there. Maybe even take out the worst ovary and leave me 1.

Are the hormone tablets better than the implant? I would hate it if I had an implant and it was not giving me the "right" doses of hormones.

I have read more about pcos and have learnt that there is an imbalance of hormones in the brain....geesh this is confussing. I also get alot of pain in my lower right side, so I am going to ask him to remove my appendix if it looks abit odd???

Talk to ya later

Trina
  #8  
Unread 05-03-2002, 04:20 PM
PCOS Ovaries...HELP please

(((Trina)))

I'm glad you posted your concerns, you do have a lot to consider and I too would be seeking a second opinion on all this probably from a very good reproductive endocrine specialist. Much as I HATE to say this especially when you are so close to surgery, think this through very carefully, research your options and if you feel you need to postpone surgery it's no big deal. You need to go in with eyes wide open and feeling comfortable with your decision, even more so because you are so young (((Trina))).
I know of a reproductive endocrine specialist in Sydney (I know that's a fair way from you but it would be worth it - it's the rest of your life you're talking about here). He has a special interest in PCOS and he is also a gyn, and an Associate Professor. I think he would be a good person for you to see because your case is complicated and he would be able to look at your whole situation. I'll email you his details, if you like. Just let me know.
The advice you have been given by others here is solid, but one thing that needs to be considered is that if there are any microscopic bits of endo left on other organs after surgery there needs to be a "hormone free" period before starting HRT, most doctors agree.
This can be hard to stick to and many women find they can't do that for long. It's also been considered by some that replacing estrogen AND progesterone is important for endo sufferers after hyst. The reason is that replacing estrogen alone can feed these remaining implants and even though your ovaries have been removed they can grow and cause pain/adhesions of organs etc. Progesterone discourages the growth of endo. Of course it depends on how extensive your case is and also what your doctor's views on this are. For a long time it was considered that removing ovaries 'cured' endo, there are quite a few women here and worldwide that have found that was not the case. Yes, their pain improved, but if their HRT needs were not looked into properly or the endometriosis growths were not removed properly then they still had problems . The ones with endo confined only to the ovaries/tubes who had them removed fared best.
Estrogen implants are good to provide a reasonably high level of estrogen and they can also replace testosterone this way. But a lot of women found they had trouble getting stable levels. It all depends on how your body uses it up. Some found they witnessed a really high dosage initially, then it slumped, leaving them feeling lousy until time for the next implant. Once they are in they are in and it's difficult to adjust your dosage, this needs to be considered. I don't know a great deal about PCOS but I do know that it's a whole endocrine problem, and does not just involve the ovaries. So I'd be seeing a specialist who deals in it, especially regarding your HRT needs, because it's more complicated than the average lady. Maybe the implants are a good solution in PCOS ladies, I don't know enough about it I'm afraid.
You are so young, I say all this not to upset you further and I know that you are already confused and frightened right now BUT I would hate to see hasty decisions made now, without expert advice from someone who deals with ALL your issues. It's no good to just whip everything out and hope for the best. Once it's done you may feel great, but on the other hand you may also face problems that you never even anticipated. This is an important decision, it's your body and the rest of your life deserves to be spent in good health, you've already been through a LOT! Have you ever seen an endocrine specialist for your PCOS or is it just your gyn handling it?
I found out after my hyst that a lot of my problems were NOT in fact related to my reproductive organs, I had an immune system problem. Of course I thought the hyst would fix everything because I was told it would! I did feel better in that I was not anaemic and got rid of those nasty fibroids, but they were only part of the problem. So researching your options and seeing the experts is something I advise given my own and other's with post-hyst problems on here. Most ladies have NO problem but the more complicated we are the more we need to make sure we are getting the correct care. I live in a country area too and it's taken almost 2 1/2 years to even get to the bottom of some of this. I only started looking like sorting it out when I saw the RE in Sydney last year, he saw me twice, second visit said I had an immune problem and that I needed to see someone else. He didn't muck around, he said he could no longer help me but pointed me in the right direction. He knows his stuff and I believe he would be ideal for someone like you. A referral is easy to get from your GP and you are far better off with someone who works from a major teaching hospital. After my experiences the last couple of years I refuse to see anyone other than those who really know what they are doing and they are only found in the city because that's where the action is as far as some of the best docs and research etc. So for the more complicated amongst us that's the best option.
Take care and I hope I haven't alarmed you, that was not my intention I just wanted to give you ALL the facts as I see them.

Love,
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