PCOS & Hysterectomy? (2005)

Hello. I'm new here. I'm almost 28 years old. I've had PCOS (Polycystic Ovarian Syndrome) for, well, I've known I've had it for 8 years now. My current doctor is recommending a hysterectomy for me. Some days I'm just like, ok, let's get it done. Other days, I wonder if I should do this or not. Is anyone else in my situation? I need some advice & support on this.
C.C.

Hi CC & to HysterSisters ~

I'm sorry you are having to consider a hysterectomy at such a young age. My sister has PCOS and I've seen how complicated and frustrating the condition can be. It's my understanding a hyst may not help some of the other problems associated with PCOS such as the insulin resistance, acne, weight issues etc.

Here's a link to our Resource Section for more articles and links on PCOS.

If you do a Search here (Purple bar in upper rt. corner) you'll find several other threads about PCOS.

Hopefully others will be along soon to share their experiences with you. In the meantime maybe you could share a little more of your history of why a hyst has been recommended to you. What type of problems you are having and treatments you've tried.

It's good you are reasearching your options so you can make the best choice of what's available to you. Now might also be a good time to get a 2nd &/or 3rd opinions from another GYN and an endocrinologist with special interest in PCOS. You're worth it and it's a big decision. Good luck, dear.

Gentle s,
Beth

http://www.soulcysters.com/

http://pcosupport.org/support/quiz.php

Thanks for the welcome Beth. You asked about my history with PCOS. I have irregular periods. When I do have a period, I bleed for about 7-10 days and it's horrificly heavy bleeding. My last cycle, I went 150 days without a cycle and only finally had a cycle because one was induced with Provera. My PCOS has killed 3 of my babies (miscarriages). I have issues with facial hair, excessive body weight, the inability to lose my weight, I'm insulin resistant (I take Glucophage - 500mg twice daily), I have thyroid disease (hypothyroidism - I take Levothroid - .2mg once daily), adult acne, ovarian cysts, migraines, depression, etc. I could go on and on. In 8 years of marriage, I have had severe fertility issues. I've only been able to get pg 4 times and 3 of my babies died during the pregnancy and the other pg was riddled with complications because of the PCOS. I have seen 4 different dr's about my PCOS and while a hysterectomy was discussed with all of them, all but my current dr wouldn't even consider it because of my age (28 in October). My current dr knows all of my issues and believes that it is my decision. I need to go back in and talk with him more. One of our major concerns is the tremendous amount of bleeding I have when I do have a cycle. Another is the miscarriages. I had surgery for the ovarian cysts about 7.5 years ago, but I have constant problems with them rupturing and I'm in so much pain when that happens. Anyway, I feel like I'm rambling. I came to this site because my husband asked me to do some more research on having a hysterectomy. Thanks for responding and I hope to hear from others soon who have had or are considering a hysterectomy because of PCOS.
C.C.

Hi C.C. ,

I am so glad you found Hystersisters, but I am so sorry that you have been through so much.

I also have PCOS and have struggled with all of its complications for over 25 years now. My 23 year old daughter was also just diagnosed with it. It sounds like you have seen several Dr's. That is an important thing. If you are still confused there is nothing wrong with even seeing more. I am sure you are aware of the fact that there are few Dr's who really know how to treat the symptoms of PCOS other than the fertility issue.

I had a hysterectomy with ovary removal about 4 1/2 months ago, and can tell you that while some of the symptoms did go away, there are many that you will have to continue to deal with. Obviously, I don't have to struggle with the pain and heavy bleeding. My testosterone level was reduced, it is now in the mid-normal range. Insulin resistance is still a major issue for me and am currently trying to get control through a low-glycemic diet.

PCOS, contrary to it's name, is not a disease caused by your ovaries. It is an endocrine disease. Your ovary issues are a symptom of the bigger problem.

Have you, by any chance, seen a "Reproductive Endocrinologist"? If not, you would get more options from him/her than you would from another Dr. I would suggest that you consider trying to see someone who has had success in treating PCOS in other ways. My reason is this: While a hysterectomy and oopherectomy can take away some of your issues, it most definitely will cause others which may or may not be worse for you. With an oopherectomy you would be immediately thrown into "surgical menopause" which is much different than regular menopause. Some women do fine with estrogen replacement but others have serious problems. Hormonal balance seems to be more difficult to achieve for PCOS patients than for most. At 28 years of age, you would want to make sure that you have tried absolutely every option. My daughter has been getting treatment for only 2 months and has had very good success with medication she is taking for controlling the testosterone. She is also seeing improvement with her cyclic bleeding and cramping.

If you have more questions, I would be happy to help you sort through and look for answers.
The choice is ultimitely yours to make, and you should have as much knowledge as is possible before you make it. Once you have surgery, there is no going back and changing your mind.

I hope this has helped a little. You have a very important decision to make. While you are trying to decide, and later, if you decide to have the surgery, you have sisters here at this site who will help you through it.

s,
Kay

Thanks Kay. I saw an RE a few years ago and she was a huge jerk! All she wanted to do was take my money and attempt to help me get pg. She is the only RE in my area (the next nearest one is something like 8 hours away) and I won't see her again. I really feel like my current dr is willing to work with me. We were dealing with some other issues of my PCOS when I saw him last so I really need to make an appt to go in and see him to discuss what other options he would suggest (other than trying to give me fertility drugs which I won't go through again) or if he feels a hysterectomy is my only option. I take Glucophage twice daily (well, I will be taking it again when my prescription gets here from the mail order company - I ran out about 3 weeks ago and had to wait until we had money to refill it) and that seems to help with the "diabetes" type aspect of the PCOS. Thanks again for your words. I'm sure I'll be referencing back to this site alot as we attempt to make a decision that is best for our family.
C.C.

	Quote:
Originally Posted by thealmonfamily Hello. I'm new here. I'm almost 28 years old. I've had PCOS (Polycystic Ovarian Syndrome) for, well, I've known I've had it for 8 years now. My current doctor is recommending a hysterectomy for me. Some days I'm just like, ok, let's get it done. Other days, I wonder if I should do this or not. Is anyone else in my situation? I need some advice & support on this. C.C.

hi im also new here. i am only 21 and am facing the same situation as you are. im am finding it very hard to make up my mind as well. i have had pcos since i was 16, i suffer from very intense pain to the point where i am bed ridden for a few weeks at a time. i no i can not live my life this way forever but i have already had an operation to try and fix it, and it only lasted a few months, i have had my period for the last 4 months straight and i just dont no what to do.

Hi there,

I am new to Hystersisters too, infact I signed up so that I could reply to your question. I have PCOS, have known about it for 5 years but seriously suspect that my obvious symptons go back to my first pregnacy. I also have had cronic period pain and also nerve damage on my cervix from a D & C that I had following my first C-Section. I had a Hysterectomy (leaving my ovaries) 3 months ago in the hope to gain some quality of life. I would like to fill you in on some of my history but it takes far too long (I wrote it down a week ago and took up 6 diary pages). So I will give you the basics that I feel are important and related to your question. Firstly I see an Endocrine Specialist (not an RE) she specilises in Menopause and PMT etc, when I first started to see her I questioned a hysterectomy (taking my ovaries) and she made it very clear (as Kay said earlier) that PCOS is not a desease of the ovaries, it is the production of the male hormones that cause the cysts and therefore removing your ovaries can cause many other problems as the cysts will need somewhere else to grow (sound gross I know), they are much easier to treat when on your ovaries, she also told me that she has had patients who have opted for the hysterectomy and have seriously regreted the decision (I definitely did not want it to get worse). So I carried on my cause , I had always assumed that my period pain was caused by PCOS but she said it wasn't so I felt pretty discouraged - you know "what can be wrong with me". So anyway, my PCOS was awful but when I took a larger dose of the Cyproterone my period pain became much much worse and in the end I was left with three seperate conditions that I couldn't treat effectively. At about 8 years post 1st C-Section I was so run down and exhausted that I decided I had to have a Hysterectomy as I had NO quality of life, my everyday was planned around each stage of my cycle. So I went back to my Endocrine doc and she said that yes in her opinion I could have one as long as I leave my ovaries, it would definitely help alot of my problems (period pain & remove nerve damage and I had to weigh up which condition would be easiest to live with) BUT it would not fix my PCOS, infact it was likely it could get worse (I deemed that if I had no period pain then I could take the Cyproterone properly which would make a large difference to my cycle - infact it practically stops your cycle while you are taking it and when you stop your cycle returns) but that she thought my PCOS would be easier to manage post surgery. It is also important that you know that even though your ovaries don't work so well with PCOS they are even worse after a hysterectomy, because the blood supply to your ovaries is reduced you will have MORE yes more menopuase like symptons. So for me it has been well worth it, I did not want to have any more children as the condition (for me) presented with my first child and got a lot worse after my second. I finally have alot more energy (and it's only been three months) and I am medicating my PCOS well - I do have HOT FLUSHES ALOT but we are working on these also. So in the end I guess I want to say; Please make sure that you seek Specialist care and see more than one, to be sure you are getting consistant info, how awful it would be to be looking for a solution only to have things end up worse, PCOS is a nightmare and although I have got alot of symptoms under control for the moment I am beginning to accept that I am stuck with it (I say that positively now - I hope I can keep saying that).

For me having my Hysterectomy is the best decision I have ever made, I have been "pain" free for months now. I had my op 6 months ago and had normal recovery, now my focus is to work at gaining the life I was missing - I am realising that years of pain and hormone problems have truely taken there toll and I have alot of habits to create and break. I feel that for the last 10 years I have tried to live a life I would like but was unable...now though I am reminding myself daily that there is nothing stopping me (other than myself) from living whatever life I choose.
Things are not perfect but so many of the things I had hoped to achieve by having the hysterectomy are better, I am still working on the HRT thing... FAR OUT... I thought I was hormonal and had hot flushes pre surgery...Well they had NOTHING on the hot flushes/night sweats I had post surgery, thankfully my endo specialist nailed them on the head. I have a long way to go with getting my hormone levels right, and now that I can effectively treat what I couldn't before I am able to see what causes each of my symptoms....I believe estrogen has SOOOOO much to answer for....OH to be a women....Hang in there those of you looking for an answer, everyones solutions are different but in most cases well worth the time and emotion we have to put in to get there.

Hello, I'm 25 I just had a hysterectomy on December 28,2015. I also had PCOS. They took my ovaries because they were 3 times the normal size and covered in cyst. It was a little bigger than my uterus.. Almost a month later and I feel great. The problems I had before (blood clotting, intense pain, and a huge weight problem) have gotten so much better. I've lost almost 15 lbs dive surgery. Pain is gone. Good luck!