Have to decide about Hysterectomy or meds...

Hi. I am 38 years old and had a diagnostic laparoscopy in Dec.; took care of a cyst & had my follow up appt today. 15 years ago I had endometriosis removed, which took care of the pain I had at the time. Also had a cyst rupture about 4 to 6 months after the initial laparoscopy. Since last May, have been experiencing irregular periods with blood clots and lower abdominal pain...and frequent migraines. Told today that I have Adenomyosis & Polycystic Ovarian Syndrome. Endometriosis was not found this time other than a tiny spot, but the doctor thinks within 6 months to a year it could very well be again...uterus is not in good shape. Was given a number of options, from trying a different bc to hysterectomy with one or both ovaries removed. She didn't give me specifically what I should do, leaving it up to me to decide. Don't know what to do. Not sure what the benefit of postponing the hysterectomy would be.

Looking for advice from anyone who has experienced this type of thing.
Thanks.

Hi

I'm sorry you are having such problems. I can't address the endometriosis issue, but I did have Adenomyosis and still do have PCOS.

I would like to very strongly encourage you to try to talk to an endocrinologist before you make your decision. It can be very difficult to get in to see them for "first" appointments, but if you called and explained that you need surgery and would like to get a second opinion and some advice about whether or not to keep your ovaries, they might be able to work you in for a quick chat. It would sure be worth a try. Endocrinologists are the hormone and endocrine experts.

The reason I suggest this is because PCOS is a disorder of the entire endocrine system. It involves way more than your ovaries, and although the ovaries are frequently involved, they are not always. For me, it was definitely better to have my ovaries removed, but I can't say that having yours removed would be best for you.

However, some things to think about and ask your Dr about:

1) Having your ovaries removed WILL NOT cure PCOS.

2) a) If you keep your ovaries, and your ovarian hormones are out of whack, you will need to have that treated. The common treatment for PCOS with ovaries is the Birth Control Pill. So, if you have a hysterectomy, but keep your ovaries, you may still have to take the Birth Control Pill to keep your ovaries under control. The BCP is associated with much higher risk than ERT

b) I had my ovaries removed, but in order to try to bring the other issues of PCOS under control, am using a bio-identical HRT. All of our hormones work together and try to attain a "balance". Without the Estrogen, according to my endocrinologist, this cannot happen.

3) There are many serious issues regarding PCOS that you need to discuss with your Dr. PCOS puts us in a "high risk" group and causes us to be at higher risk for some types of cancer and heart disease and diabetes. I can't stress enough how important it is to find a Dr who is knowledgeable about the disorder and encourage you to see a Dr who would be up to date in the latest research and treatments available.

Having said all of that, I am willing to share that since I had my ovaries removed, I feel better than I ever have. I always knew my hormones were not right, but was never able to get a Dr to understand it and do anything about it.

For further reading about PCOS, and to understand what kinds of treatments you will likely need if you keep your ovaries, you might want to go to soulcysters.com and look around. I will warn you though, that I have never seen any information there regarding PCOS after hysterectomy/oophorectomy and most of the women there are dealing with the infertility aspect of PCOS and therefore most of the forums are focused on that goal. If you do a google search for PCOS, and focus on the endocrinology and .edu sites, you may find more of the information you are looking for. That is how I get a lot of my information.

I hope this was a little bit clearer than mud. Let me know if you have any further questions regarding the PCOS.

Hopefully someone will be along soon to discuss the endometriosis aspect with you.

s and Best Wishes,
Kay

Thanks Kay.
This stuff is scaring me. I called my doctor this morning and waiting for her to return my call...have more questions from my follow up appt I had with her yesterday. Hoping to get the name & ph# of the nurse practitioner she recommended (the MD moved out of state that specialized in PCOS). Not sure if it's an endocrinologist.

If I knew I'd feel better for sure...would have the surgery sooner than later. What I read, seems like I could have other issues develop trying to fix a couple issues (w/hysterectomy). Women saying they've had bowel and bladder problems after the surgery...or continual pain. Even the thought of my personality changing, whether temporary or permenant.

The other health concerns that could develop from PCOS...definitely want to make sure I'm getting treated. I wasn't expecting my ovaries to be in such bad shape. Have known my hormones have out of wack for quite a while (but when they tested them, always came back w/in normal range)...knew there was something wrong with my uterus. Hoping the ovaries would have been healthly, maybe the decision wouldn't be so difficult.

Thanks again for your input and sharing your experience with me.
Bridget