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  • 24-year-old, upcoming hysterectomy/oophorectomy

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    Old 09-30-2014, 01:01 PM   #1
    twiabpaianlatd
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    24-year-old, upcoming hysterectomy/oophorectomy

    Hi, everyone. I am new here. A bit of background about me: 24-year-old woman with previous history of complex dermoid/teratoma torsioning on left ovary at age 17 (13cm x 8cm) removed; after surgery, experienced many bowel changes and abdominal pain due to scar tissue/adhesion

    After the removal of my left ovary and the torsioned, large tumor at age 17, I became sick about 2 years ago (diarhhea, nausea, vomiting, abdominal pain, weird symptoms). I was rushed to the ER due to vomiting for 5 days straight and being unable to even retain water. They hydrated me and gave me strong anti-nausea meds which initially did not work in order to stabilize me and sent me home. Same thing happened a month later (around my period, again) and I was rushed back. They did the same thing, but this time my mom demanded them to do a CT/ultrasound of my abdomen due to prior ovarian tumor. Sure enough, I had another complex cyst, this time on my only remaining ovary.

    The doctors say that my symptoms should not have anything to do with this tumor, but I don't see how, and they are not sure what it is made up of exactly. I have read on my own (since the doctors do not help/dismiss me) about various ovarian tumors and have seen they can emit hormones or mess with hormones. I am experiencing symptoms daily that interfere with my life.

    The symptoms I experience most are:
    - mood changes
    - fatigue (mostly physical)
    - weakened immune system
    - bowel problems (diarhhea, constipation, etc)
    - abdominal pain
    - moderate to severe pain in lower back/hip on right side (rt side is where my only ovary & tumor are located)
    - decreased appetite
    - muscle/bone pain
    - bloating
    - headaches
    - nausea/intense vomiting spells, nausea nearly every day & nonstop vomiting spells lasting 3-6 days every 2 months on average where I have to get hydrated and IV meds for antinausea meds
    - night sweats
    - moments of racing heartbeat
    - NEW SYMPTOM: I was put on B.C. in Feb following my surgery in order to hopefully prevent me from getting so sick during periods; I was advides to take it continually so as not to have a period, and I experienced very little spotting the first month which went away...now all of a sudden, within the past month, month & a half, I have been experiencing daily vaginal bleeding despite being on B.C. It is usually very dark and clotty, and there is tissue in it/in the toilet when I urinate

    The doctors dismiss me and provide little to no support. They think I am so young that nothing should be wrong. I am very worried something more than just a dermoid cyst on my ovary is wrong with my body. I know it sounds silly, but I can tell and feel there is something else wrong. I had surgery earlier this year to rule out endometriosis, but the tumor and ovary were left there because I have no children yet, I am 24, and I will have to have a hysterectomy. I know I will have to get a hysterectomy regardless, in the next few years, because this tumor will only grow slowly (or quicker) over time. I am worried what the tumor might contain inside of it.

    I am terrified of having a hysterectomy and have had a lot of trouble coping with it. I have not been offered any info on how to possibly preserve my eggs, I have not been able to get hormone tests, nothing. I don't know what to ask the doctor anymore. I have an appt tomorrow with the OB/GYN regarding the abnormal bleeding and for a routine pap smear, and I want to know what questions I should ask. I don't want to think about the fact I will have to have my only remaining ovary removed but I know that is the reality. I just don't want it sitting in my body if it is the reason I am sick. I have to think they have to do with this tumor.

    Please offer advice/help on what you think may be causing this or your own experiences. No one in my life can relate or understand, and I am growing incredibly depressed. Thank you. <3

    Last edited by twiabpaianlatd; 09-30-2014 at 01:06 PM.

     
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    Old 10-08-2014, 09:50 AM   #2
    sweetpotato13
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    Re: 24-year-old, upcoming hysterectomy/oophorectomy

    I can only offer you this, and hope it helps.
    First of all, I am so sorry for what you are going through and so sorry you aren't feeling well.
    I had a dermoid cyst removed when I was 18. Because they contain mature tissue, they are almost always benign. Dermoids are something we are born with and from research I have done, they do not cause other issues. I also had a hysterectomy when I was 47, well after my child bearing years.
    I think you should make an appointment with a young female OB/GYN. Tell her about ALL of your questions, and symptoms. Your symptoms are sort of all over the place, other than the side/hip pain which I had too, before my surgery. Hope you can get the help you need.

     
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    Old 10-10-2014, 05:54 AM   #3
    STLouisgal
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    Re: 24-year-old, upcoming hysterectomy/oophorectomy

    You poor girl! You have been through so much and are not getting much help. First of all, you should not need a hysterectomy (uterus removal) for an ovarian cyst. And you should not need to lose your ovary IF you have a gynecologist/surgeon who has good cystectomy (cyst removal) skills and the cyst is benign (as determined during surgery). MOST cysts, even complex ones, are benign.

    I agree with you that your symptoms sound extreme for the cyst to be the cause or the sole cause. However, some women do have vomiting associated with their menstrual cycle. I have read that a high level of prostaglandins can cause that (as well as cramping). Do you have cramping too? Have you tried taking an NSAID (such as Aleve or Motrin) at the start of your period to reduce prostaglandins?

    Some of your symptoms are "menopausal" type symptoms and could be due to the hormonal changes from the loss of your one ovary and your other ovary not functioning properly either because of the cyst or because its "twin" is gone (ovarian failure can happen after gynecologic surgery especially if part of the "reproductive" system is removed whether it be one ovary or the uterus). A hormone panel (blood test) would be a good idea to see what is going on. Having your thyroid checked would be good too.

    Birth control can be trial and error so you may need to try a number of them before finding one that works best. And you may need to see a different type of specialist if you are not getting the help you need from a gynecologist. Good luck in getting proper treatment!

     
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    Old 05-01-2016, 08:51 PM   #4
    grettyspaghetti
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    Re: 24-year-old, upcoming hysterectomy/oophorectomy

    Hey Twiabpaianlatd,

    I'm sorry you're going through this! Im hoping it's all been sorted out! I dont want to be intrusive so dont answer if you dont want to but i'm wondering what you ended up doing about this? i've got similar issues but both of my dermoids will be resected at the same time very soon. Hope you're ok!

     
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