Ange._E

193d

My diagnosis is new and my doctors are not saying much in terms of options for treatment because they are afraid of long term implications. I haven’t had children yet and they don’t want to do any surgeries. What are some treatment options that have helped manage pain?

Generalized pain

Pelvic congestion syndrome

Chronic Generalized pain

Chronic Abdominal Distention

View all
  • SadMom95

    193d

    So I was JUST diagnosed with this as well. It is treated with hormonal therapy I believe but because I have a blood disorder my only options were a hysterectomy or the birth control implant that goes in your arm. I have 3 kids and had a tubal so surgery is the option I am deciding to go with. My question is this, do you WANT children in the future? If you'd like to disclose your age that would be helpful to give you advice but you really don't have to. If you are young, I'd talk to your doctor about the implant or hormonal therapy.

    • Ange._E

      192d

      I’m 29 and definitely want children in the future. I also have only one ovary after having the other removed due to a tumor that formed years ago. Was your experience with the implant ok?

  • SadMom95

    192d

    I did not receive the implant because I chose surgery. I do not do well with birth control, hence 3 kids 😅 lol Definitely talk to your OB about the implant though. I've heard good things about it. I hope you get the answers you want. I'm sorry you have to go through this

  • Dehlila

    189d

    I’m 20 years old and I’ve known that bc of the fact I have pelvic adhesive disease as well as pcs I can’t have children. I told my doctor I wanted a hysterectomy and that I was totally a go for it and kids were still an option just that I would adopt. If it means no more pain. But he didn’t seem quite okay with it, and said I’m at “high risk” for surgery and had me just get an iud implant like that was going to help… which it isn’t. So I don’t get it, I’m tired of being in pain all the time and it sucks

  • RonJohnson

    186d

    I’ve found that the best long term treatment for PCS is ovarian vein embolization, which I’m having done this coming Monday. My understanding is that it’s the most effective treatment but that recurrence of symptoms is possible but not super common. I’ve also been treating my symptoms with a hormonal BC “to reduce pelvic bloodflow” and it helped for a couple of months but I’m gradually declining to my level of dysfunction pre-medication

    • RonJohnson

      186d

      And this isn’t performed by a GYN; my GYN knew nothing about PCS except how to identify it. I’m seeing an interventional radiologist now, it’s important to not treat it as a gynecological issue but as a vascular condition:)

      • QueenLady

        131d

        how are you feeling after your procedure? Have your symptoms resolved?

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