Hysterectomy and PCOS

trunk · 12-09-2004, 11:09 PM

Hi- I am new to the list as a member. However, I have been lurking for a while and reading various posts. My name is Debra and I am planning on having a hysterectomy at the beginning of '05. I am 38 yo and married with 2 children. I have PCOS, endo, ovarian cysts that have ruptured, fibroids, HEAVY periods, annovulation, the list goes on and on. I am curious how many of you cysters have had a hysterectomy with both side ovary removal? Has it changed your life for the better? Have you noticed any changes in your PCOS ? I also have adult acne, and a few (thankfully!!) extra hairs that shouldn't be on my body. I am hoping that my hyster will make me feel better and I will be in less pain.

I look forward to meeting you all.

Debra
(trunk)

CathyWood · 12-10-2004, 01:37 AM

HI Welcome to SC I am glad you found us. Hope for all the best and see you around.

CysterChrista · 12-10-2004, 10:57 PM

I've read lots of posts about hysterectomy, though haven't had one myself. After the posts I have read, I wouldn't either. Since PCOS is caused by hormone imbalances, not your reproductive organs, getting a hysterectomy really doesn't resolve the cause of the problem; it only resolves a few symptoms.

For instance, most PCOS is caused by insulin resistance. Hysterectomy will not solve the insulin resistance, it will only remove a few organs affected by the insulin resistance. Other organs affected by IR are your heart, breasts, and colon. Doctor's aren't as quick to go ripping those out.

Many, myself included, think doctors are too quick to suggest removing a woman's reproductive organs. When do they suggest removing a man's reproductive organs? Only when they are cancerous, or are in some other way immediately life-threatening.

Just something to think about. Whatever you do, you'll get the support you need here.

Christa

Pattyannruss · 12-11-2004, 02:33 AM

Hi there!!

I am now 37. I had a total, both sides done March 2003.

For me I had great improvement. less pelvic pain(still have phantom rt side ovary pain)
My acne improved.
Moods improved.
Don't miss the periods and clots.

But....
My cholesteral shot up(proven side effect of hysterectomy)
Weight shot up.
I now have a MAJOR lack of sexual disire. Dry problems.
Can't use HRT/BCP because of the side effects.(swelling, mood swings, head aches, acne, muscle pain)

Had I known prior to surgery that BCP and/or Met,Gluc could cause anxiety,muscle pain,cronic pelvic pain I may have waited for the full hysterectomy.

But I do know that fibroids are the number one reason for having a hysterectomy. They are difficult to treat, let alone control.
Then to have PCOS on top of it is even harder.

Another thing to keep in mind. It could take up to 2 full years to feel like your getting back to your normal self. For me It was about a year and a half before I could say I felt better.

So yes, there are some benifits as well as negitives.
But for me I feel it was worth it.

for more advise and support during this time I would suggest checjing out histersisters.com

They won't give medical suggestion freely like here at soulcysters. But they can offer alot of support from women who have faced or are facing the surgery.

I wish youu the very best.

Patty

jennthediva · 12-11-2004, 04:03 PM

Hi,
I also wanted to jump in and mention that a hyst will not cure endometriosis as well. The main problem is having too much estrogen, estrogen can make it's own blood supply, so it doesn't need the reproductive organs to live. It's very similar to a cancer...

karibean · 12-17-2004, 02:17 AM

I just wanted to jump in on this conversation. I am 9 weeks post op from a total hysterectomy and removal of both ovaries. I haven't felt this good since my early 20s!!! For 13 years, I have been dealing with all the issues that PCOS can bring on...weight gain, extra hair, migraines, infertility, bleeding issues & huge clots, mood swings, painful cysts...you name it, I dealt with it. However, for me, it got to a point where I was very anemic and was diagnosed with complex endometrial hyperplasia with atypia. My doc was very vigilant about keeping an eye on both and after 5 years of treatment (multiple D&Cs to keep cancer at bay due to the hyperplasia & iron pills to keep my levels up), I had to have a hysterectomy. Since my ovaries were covered with cysts, there was no reason to keep them either. I have been very blessed with an uneventful recovery(no complications)...and I've lost weight, have increased energy, sleep great at night (that was rare prior to surgery), my cholesterol is lower, and haven't had one migraine!!! I used to get migraines once to twice a week! I would never recommend a hysterectomy as a cure for PCOS (as we all know, there is not a cure for PCOS) or to anyone prior to them doing their own research, but for me, it has been terrific! I just wanted to let you know that there are positive outcomes to hysterectomies in addition to all the horror stories we hear about. Oh, and BTW, I am on HRT (patch) and love it! But there are so many different kinds of HRT, that if one doesn't work for you, there are others that will, most likely!
Check out www.hystersisters.com. It's a great site for surgery support...helps with what to expect & what you will need! I found it very helpful. Best wishes to you for a healthy life!

karibean · 12-17-2004, 02:21 AM

Forgot to add in my post up above, but even though it's only been 3 weeks since I was medical cleared to resume having sex, it's already SO much better. No pain...and no bleeding!!! Sorry if that was TMI but I just wanted you to know my whole outcome!

ktbarthedoor · 01-01-2005, 01:56 AM

Hi! My GYN handed me a bunch of pamphlets, and offered me everything from a hysterotomy with ablation (sp?), a D & C to a hysterectomy.
My uterine lining is thick (again!) and did not respond to progesterone. (I am also on 1,000mg metforman twice daily as well as chasteberry and saw palmetto).
My family doc says that my PCOS symptoms will "go away" so get a total hysterectomy, but from what I am reading, PCOS is an endocrine problem, so it will not help--except maybe ease the right ovarian pain I am having.
So now I am leaning toward the ablation w/hysterotomy. Sounds like the lesser of evils. Perhaps you should ask your doctor about this proceedure. It stops irregular bleeding, and they can biopsy as well.
Peace and heath in this new year!

mammaswan · 01-25-2005, 01:48 AM

I haven't been on for about 3 weeks. I was scheduled to have my right ovary removed 1/11 because of a huge cyst (10 cm) and heavy bleeding and huge clots. Well, when I went for my pre-admission testing my hemoglobin was 5.7--very low--and I had to have an immediate transfusion. Instead of just removing ovary, my doc really recommended a hysterectomy because I am 55 years old and not even close to menopause. She told me that being perimenopausal and having PCOS, that this would most likely happen again and I might not be so lucky with gradual blood loss, I could just bleed out next time.

At the present time I'm healing nicely, but feel kind of blue. It's been 2 weeks since surgery. Is this normal? this feeling blue?

Also, I have to see my endo because I am IR. I haven't been on Glucophage since late Nov. (I wonder if that caused the growth of the cyst, which by the way turned into a 10- cm tumor that had hormones in it). She is not a Gyno/Endo. Should I seen a Gyno/Endo? I have one ovary remaining...that's it. I have not been following any kind of diet since I was in for transfusion and I know I need something for IR, but I'm afraid Gluco is going to do same thing to other ovary.

Any advice at this time would really be appreciated. I am at a loss.

Thanks

leanner977 · 01-26-2005, 04:33 AM

When I was recovering from my c-section my nurse and I got into a discussion about this. She said the main reason docs leave your ovaries whenever possible is to avoid HRT....BUT women with PCOS are often on BCP which is basically a form of HRT since our ovaries do not produce the right hormones in the right proportions.

Just thought I'd add that.

ktbarthedoor · 01-26-2005, 02:13 PM

mommaswan,
I am glad to hear you are healing. I do not know enough to give you info --but I think you gave yurself the best advice: see someone who KNOWS gyn/endo. (Not often easy!)
Metformin is used for IR, but also hormonal balance for PCOS.
Considering your bleeding problems, that has to be a huge consideration in your medical plan.
For me, some docs thought I should get a hysterectomy (I am 48)
to "get rid of" PCOS. But I hve learned on this web site, that it is an endo problem. I had an ablation instead of the hysterectomy, and my GYN and family practitioner are willing to work with me on bio-identical (natural) hormones to get me in balance again.
All I can say is read, question and push for answers from your docs.
I wish you well,
kt