Endo, PCOS, fibroids and no fun right now

Hi to all. I'm 33 with 3 daughters & an awesome husband. I had a lapi 4 years ago for endo, fibroids, ovarian cysts & had my tubes flushed. I concieved my 2 1/2 year old 3 months later. I have PCOS, painful periods, endo again, spotting for no reason, bleeding after sex, bleeding when lifting heavy things(75+lbs), periods 15-20 days apart (this part started in late January) and no desire to keep this crazy cycle going. I know I'm not the only one but it sure can feel like it. I had a liver tumor removed in 6/04 that was caused by BCPs so I can't use those to regulate me anymore. I see my Dr on 4/4/07. He thought a hysty was an option back then because we had tried so many other things. Can anybody tell me if they had PCOS and a TAH in their pre 40's and how it went with the hormone challenge? I would love any posts on a TAH in the pre 40 range. Did you regret it? How do you deal? Thanks! XOXO

Welcome to Hystersisters!

While I don't have PCOS and did not have the TAH, I did have my hyst over six years ago when I was 25 and it did stop the bleeding issues!

Because I did keep my ovaries, I have not needed HRT, and my hormones flucuate as they did when I was not on bcp. They are, of course, feeding any microscopic endo that was left behind as well as the endo on my bowel walls. But for me, we felt it was best to keep them for the benefit of my overall health -- cardiovascular system, bones, skin, eyes, libido, etc. -- because I was so young. I am aware that I may need them removed in the future, then HRT will be a challenage due to the endo. Any estrogen replacement would also have potential to feed the endo just as my ovaries are doing now.

While I do not regret my hyst, I am not cured. Unfortunately, there currently are no cures for endo or PCOS; a hyst is not a cure, and removing both ovaries and tubes (BSO) will not cure either illness.

In our Resource Database, you will find many resources with information regarding endo, PCOS, and fibroids. The more you know about your medical conditions, the better able you are to know what treatment options and plans are right for you.

Do you by any chance have an endometriosis specialist? Or do you see an endocrinologist for your PCOS? A good endocrinologist will often be skilled at treating both endo and PCOS -- knowing the lastest treatment options and when those options have been exhausted. And before having surgery, it is wise to seek at least a second medical. There are pros and cons to a hyst, and it is a major surgery that is not without risks. Throw in endo and PCOS, and the situation gets a bit trickier.

You will be needing a doctor or doctors who are knowledgeable regarding endo and PCOS, and how to help you manage both diseases post hyst. If you have a BSO, you also will need doctors who are knowledgeable regarding how to help you with any hormone issues without feeding any microscopic endo that was left behind and you will still need help dealing with PCOS.

We have many threads on the site discussing PCOS, endo, fibroids, etc. You can use the search tab at the upper right of your screen to search for key words to find those threads so you can read about what other women have done in the past.

I wish you the very best as you gather information and decide what is best for you and your particular health situation! There are many great ladies on the site and I hope many of them will stop by and share their experience with you!

Dear Nicnac,

Having a hysterectomy will not affect the PCOS at all, since PCOS is a disorder affecting the entire endocrine system. However, since PCOS often leads to a diseased uterus, it will get rid of any symptoms due to that diseased uterus.

Having your ovaries removed will throw the hormone balance off even further. However, it also (according to my DR) makes it much easier to find a balance with HRT. Finding this balance takes longer with PCOS because in addition to the estrogen, testosterone and progesterone, our thyroid and insulin have to be managed. Any change in one of these hormones will throw the need for the others off. It took me 2 years to find a comfortable balance. My Dr said it can take up to 3 years.

You may want to make sure that you speak with someone very knowledgeabe about PCOS, endo and surgical menopause before your surgery so you will be aware of all the issues you are facing. If you have one available, I would recommend a Reproductive Endocrinologist. In addition to having a need for HRT to balance your hormones, estrogen is what feeds endometriosis.

Here are some PCOS resource links you may be interested in:

Here is a link to Hormone Basics . On this page there are many good articles you may be interested in. They are all listed in alphabetical order, so if you scroll down to the P's you will find those regarding PCOS (Polycystic Ovary Syndrome).

Before you make any decisions, take the time to learn as much as you can so you can make the best decision for you.

and Best Wishes,
Kay

Endometriosis specialist can usually offer better treatment of endometriosis, usually without the use of Lupron, using excision.

I am one year from surgery for removal of deep infiltrating pelvic endometriosis and a bowel resection of intestinal endometriosis.

Best thing I ever did. I went to Portland, Maine.

I am seeing an endo specialist. This whole battle has been going on for 19 years with me (since I was 14). Over the years I have seen about 12 different Docs and I have an awesome endocrine specialist and my ob/gyn trained with him and specialises in PCOS, endo, high risk pregs and infertility related to hormone issues. He saved my life a few times from crazy stuff Docs had done to me. It is so wrong that so many of us have such a horrible time with all of this. I can hardly wait to see what we can do tomorrow. I don't want Lupron or a TAH. We will figure it out. Keep praying, I know there is a plan. XOXO

I'm sorry it took so long to get back to all the sisters here. Two words... ovarian cancer. I didn't even have it on my radar- it wasn't a thought. Please pray! Things have been crazy and now things are going to get really busy. BTW my crit was 4.2. I need plasma - kind of weird. Any help or ideas would be great.XOXO