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In Search for Support Pending Oophorectomy In Search for Support Pending Oophorectomy

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  #1  
Unread 08-06-2020, 10:10 PM
In Search for Support Pending Oophorectomy

Hi, sisters. I had a hysterectomy 3 years ago in May at age 21 due to severe endometriosis. I also have been diagnosed with PCOS. My doctor removed my uterus, cervix, and Fallopian tubes but left my ovaries due to my age, saying that removing my ovaries would not cure my PCOS. Well, here I am 3 years later, and I’m experiencing a lot of problems and pain again. I'm currently taking the high dose of Orilissa, as prescribed by my new doctor last August. It has been a great pain-relieving medication (if you can survive the side effects!) However, the medication is not approved to be taken longer than 6 months. When my first 6 months passed, I stepped down to the low dose of Orilissa, and all my pain came back within a month and a half. The timing was terrible because COVID hit and my scheduled appointment with my doctor had to be a teleconference visit. The appointment originally was supposed to be looking at options for the removal of my ovaries, but at that time, only life-saving surgeries were being performed. So, my doctor said even though it’s not been approved for a second 6-month treatment, I should go back on the high dose of Orilissa, at least for a few months in anticipation for things to calm down. That was in April, and I scheduled an appointment with her for August 12. Things went fine and pain decreased for 3-4 months until I was prescribed an injection for insulin resistance, called Ozempic. After about a week from my first injection, my pain returned along with countless hormonal symptoms. After speaking to my physician who prescribed the injection, she confirmed that I just need to have my ovaries removed before continuing the injection. I also fear my bladder is falling as I’ve had a sudden onset of urinary issues and no infection. I can feel it drop when I cough. However, my OBGYN has been on leave and will not return until a week after my original appointment, so I had to reschedule my appointment for the 19th. Also, I start back to college on the 17th, so having surgery soon is imperative. I’m also engaged to be married this fall and would like to enjoy my wedding night. My sex life with my fiancé has suffered because at some points, I’m not sure if I’m in pain or coming. He’s a great sport and very understanding, though. (Sorry if that is too much information.) Another complication is that my insurance is changing, so I lose my good health insurance in September. All of that is in addition to the severe pain I’m experiencing that is causing me to lose sleep. I’ve called several doctors’ offices for weeks in hopes of a sooner appointment with no luck.
If anyone has any suggestions or support to offer, I’d certainly appreciate it. Blessings.
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  #2  
Unread 08-07-2020, 12:47 PM
Re: In Search for Support Pending Oophorectomy

PCOS typically does not cause pain, did you get a diagnosis regarding your pain?
I would definitely not rush to surgery before understanding what the cause is.

Also, have you research diet and PCOS, some do and don’t of foods can offer relief
  #3  
Unread 08-08-2020, 05:18 PM
In Search for Support Pending Oophorectomy

  Quote:
Originally Posted by GPMS View Post
PCOS typically does not cause pain, did you get a diagnosis regarding your pain?
I would definitely not rush to surgery before understanding what the cause is.

Also, have you research diet and PCOS, some do and don’t of foods can offer relief
Hi, thanks for responding. My current gynecologist says my pain is still endometriosis related. That’s what the Orilissa prescription is for. She hasn’t specified whether she believes the endometriosis is left behind from my hysterectomy or new caused by hormones, but I did go for just over 2 years with very little to no pain even with fluctuations in hormones either naturally or through HRT. I’ve gone to many other doctors and had many different tests run, including a colonoscopy, to rule out other causes as well as trying elimination diets. I’ve had multiple physicians suggest an oophorectomy before continuing any further treatments. Thank you for reaching out!
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  #4  
Unread 08-11-2020, 04:54 PM
Re: In Search for Support Pending Oophorectomy

I am sorry to hear about your situation. You are so young to be experiencing such problems, especially a hysterectomy, and doubly so for a BSO. I advise avoiding a BSO and the attendant surgical menopause if at all humanly possible. For the record, I was premenopausal when I had my hyst/BSO. In retrospect, I would never recommend those surgeries if they can be avoided, even though two doctors and an OB/NP said it was the only way to solve my problems. Years later, I found out there may have been other solutions that would have saved a lot of pain and grief. HRT is inconvenient and annoying, but could be even more problematic if the supply chain is disrupted. Why subject yourself to this possibility?

I highly suggest avoiding removal of your ovaries. They perform a very important role, and there is always the possibility that they aren't the problem. One option is an herb called Vitex, or Chaste Tree. Vitex is prescribed in some parts of Europe for endometriosis as well as other feminine issues. It also helps to address the hormonal imbalances that cause PCOS. It is considered very safe and can be taken in tincture or capsule form. I've seen the effects firsthand. My sister has had problems with PCOS for years, but she began taking Vitex a few weeks ago, and her condition is greatly improving.

Whatever you decide, do not be rushed into that decision. Take the time you need, as your choice will affect your health for the rest of your life. I wish you the best.
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