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PCOS after hysterectomy
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03-23-2010, 10:05 AM
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HysterSister
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Posts: 19
Hysterectomy: March 3rd, 2010
Surgery Type: DvH
Ovaries: Removed both
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PCOS after hysterectomy
I had a partial hysterectomy in 2008 because of endometriosis and severe pain. My doctor refused to remove my ovaries because of my age. This past year I started getting lots of cysts. By January, the pain was constant. I found a doctor who finally reluctantly agreed to remove my ovaries. When she went in, the right ovary was covered in endo and adhered to the abdominal wall. When the pathologist examined my ovaries, he said they were filled with cysts and fybroids. He said this was indicative of PCOS and recommended that I get a clinical follow up. I have scheduled an appt with an endocrinologist because I am concerned about possible insulin resistance and diabetes. I am having a hard time finding information about PCOS after a hysterectomy. Most info I find is related to infertility. If any of you who have PCOS have had a full hysterectomy, can you tell me about your experiences? How do you treat it if you are not struggling with the hormones anymore? What does it mean now that the ovaries are out? Do some of the other symptoms get better now (facial hair, thinning hair, dandruff, weight gain)? I have struggled for years with endo, severe pain, cysts rupturing and hormone fluctuations. I am looking forward to life without my ovaries. I appreciate any input you ladies have.
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03-24-2010, 11:05 PM
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HysterSister
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Posts: 6,719
Hysterectomy: February 18th, 2005
Surgery Type: SAH
Ovaries: Removed both
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Re: PCOS after hysterectomy
Hi ,
I have PCOS, and can share my experience. First though, you have already made the best move you can make by making an appointment with an endocrinologist.
I also have not found any good information regarding PCOS after a hysterectomy. Here is what I have been able to learn though. PCOS can involve any or all of the endocrine system. Having the ovaries removed, prevents the hormone cycling, which I have been told by my endocrinologist makes PCOS easier to treat. My insulin and testosterone levels still run high without medication, and I control those levels with metformin and spironolactone. I also take estrogen. When my estrogen levels get too low, it causes my testosterone levels to go up. So, taking estrogen, for me, is important in reaching a balance. My thyroid is low, and the answer is not out yet as to whether this is caused by the PCOS. However, hypothyroidism is common with PCOS. I have also found that if I avoid simple carbs, that it keeps both my insulin and testosterone levels down. Somehow the two are related with PCOS, although there is a question as to which one occurs first.
All of the symptoms you have described can be controlled with hormonal balance and requires a knowledgable Dr.
Having said all of that. The last few years of my life, without my ovaries and with proper treatment, have been my best years. No more pain, no more wild hormone fluctuations. YAY!!!
Remember though, that patience is very important in finding your balance. It took me almost 2 years, and women without PCOS are more likely to find a hormonal balance within one year. We just have a hormone disorder that makes that balancing a little trickier.
One word of warning. Not all endocrinologists have an interest in treating PCOS. I called 3 and asked the nurses if the Dr's had an interest in treating PCOS, and only one said yes. If you have not asked this question yet, a phone call could save you a wasted appointment.
I wish you all the best, and hope your life is improved as much as mine has been. Don't give up. Hang in there.
If you have any specific hormone questions, you can ask them in the Hormone and Menopause Central forum. We'll try to help you as much as we can.
Kay
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03-26-2010, 10:19 AM
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HysterSister
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Posts: 19
Hysterectomy: March 3rd, 2010
Surgery Type: DvH
Ovaries: Removed both
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Re: PCOS after hysterectomy
Thank you for your response. I am also hoping that this is easier to treat now that the ovaries are out. My gyn put me on a very low dose HRT pill. That may change after I see the endocrinologist. I am worried about taking too much estrogen, though because I also have endometriosis. I guess it may take awhile to reach the perfect balance.
Right now I would just like to have my energy back! I feel like I am so tired all of the time. I'm not sure if that is from hormones changing or from still healing from surgery.
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03-26-2010, 02:36 PM
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HysterSister
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Posts: 6,719
Hysterectomy: February 18th, 2005
Surgery Type: SAH
Ovaries: Removed both
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Re: PCOS after hysterectomy
It is very normal to feel tired, and tire easily for about a year after any major surgery. It takes that long for everything "inside" to heal. During this time, your body is using a great deal of energy towards that healing.
Here is a link to the Endometriosis Support forum, where you can find out how others with Endo issues are doing. I have read that many are using progesterone in addition to the estrogen, which can help control the endo. I also take progesterone, as my feels it is helpful for both the PCOS issues and in controling the fibroid growth.
My advice is to learn as much as you possibly can, and keep a journal of how you feel and any symptoms you have. this can help you bunches down the road as you begin to see how you react with different changes in hormones.
For now, try to get as much rest as you can.
Kay
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08-10-2010, 09:34 PM
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HysterSister
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Posts: 7
Hysterectomy: July 15th, 2010
Surgery Type: TVH
Ovaries: Removed both
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PCOS after hysterectomy
Well I just had it all out but cervix and am enjoying no pain and bloating or PCOS at all. I take the vivell patch and am feeling a little tired but great!
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