Fiborid nightmare

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Hi, I could do with some help..I was diagnosed in May via a Trans Vaginal Ultrasound, that I have a simple 7cm cyst on my right ovary, and a large 14-16cm Fibroid which is deviating my uterus. I was given a CA125, which was slightly raised. I was menstruating, so they re ran the tset a few weeks later and it was within normal range. My symptoms are bloating, contsant pain and frequent urination, as well as fatigue. My Blood works were ok, just a little low on Heamaglobin, My periods are a nightmare, cramping, passing blood clots and flooding, with some bleeding, cloting occasionally experienced between periods.t. Tranxamic Acxid helps a little. I had a Hystersopcy and Biopsy this week, which left my 'Bits' very sore! The Dr said they couldnt see the firboid in my uterus! They havent told me what type of fibroid this is! They want to re do the TVU scan, and complete a Pelvic ultrasound. My uetrus is stretched to 17cms, that is almost tripple size!! I am fustrated that I still dont know what is going on!!! They were going to sort Fibroid, and just monitor the simple cyst, now they are querying my pelvic region...its just the waiting, another 3 week wait for a scan, and 1 week for the results, and still no clue about treatement options!!

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  • Posted

    After feeling a large mass in my abdomen, and frequent urination and backache,May last year I had scans which showed that I had a cantaloupe melon sized fibroid plus two others. My fibroid was on the outside of my uterus attached by a stalk. July I had a hysteroscopy and biopsy and a hysterectomy was scheduled and I was put on the waiting list. Fast forward to 2nd June when I had total abdominal hysterectomy and oopherectomy with vertical incision. My large fibroid had grown to a 24 week size pregnancy and one of the other fibroids had also grown and was attached to my bowel. My consultant stated that I would be going home considerable lighter than when I came in lol. It is a big operation but I am slowly getting better. You need lots of help during your recovery. My husband has been amazing. Whether this is what you choose to do as it depends on your age, whether you want children etc but I feel I made the right decision for me. A uterine fibroid embolization was also suggested but even the consultant said it doesnt always work. Also look up myomectomy. Good luck and let me know what happens.
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  • Posted

    Hi Julie, many thanks, I think they suspect, well obviously form my hysterscopy that it wasnt inside my uterus. What was the result of your hysteroscopy, and di you have to wait long? They can only see one fibroid..I dont want to children, but at 39, I dont want the menpopause either!! I think I will opt for partial hysterectomy and leave at least one ovary..did you have to wait long for information after the hysterocopy?
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  • Posted

    Alos, they did tell me that I am not a candidate for any of the laser type stuff...sucks...I looked at Hsyter Sisters, but cant see where to pst stuff on the forum? 
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  • Posted

    After I had the scans, the next day I saw a doctor at the hospital who said I would need a hysterectomy and tried to do a biopsy there and then. However, she could not perform it because the fibroid had pushed my uterus to one side so a hysteroscopy by general anaesthetic was scheduled for 6 weeks later, which was in July. A couple of weeks later I rang to see what the results were and everything was fine. Another appointment was scheduled at the end of August with my consultant when I signed the consent form. We have a long waiting list at our local hospital and I ended up waiting 9 months. I am 52 and also had my ovaries out. At the moment I am only getting the odd hot flush but if I was your age I would choose to keep my ovaries, unless of course they are damaged in which case I would give the surgeon permission to remove them. I am glad I had it done but it is a big op and it has taken me by surprise how incapacitated I have been. I am 4 and a half weeks post op now and am so tired. No lifting, driving, vacuuming etc. Do you have a good support network at home? I have also been signed off work until the beginning of September as it is quite a long recovery time if you have the abdominal surgery, less if you have vaginal or laparospic. Because of the size of my fibroid had to have a vertical incision.  On the hystersisters website after you have signed up as a member, go to the menu at the top, go to forums and a drop down menu will appear, then click on hysterectomy pre-op. I have found it a great help and all sorts of questions asked and answered. Even stuff you might be embarrassed to ask your own doctor.
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  • Posted

    I guess you are lucky to be part of this forum. As much as possible conserve your ovaries if they are healthy. I was in tremendous night time abdominal pain .  They were 2 kinds of pain, one was lower abdomen....which was similar to contraction of second trimester which I know was due to my large fibroid. But the second pain which woke me up at night I was almost 60% sure was not related to my fibroid. This I voiced to the Doctors that looked after me but they were convinced it was due to my large fibroid as it was growing larger. I was even sent to a cancer unit which scared daylight out of me. I was advised to keep my ovaries but I did not considering the pain I usually get at night. The sad thing is that my nightly pains have persisted, hot flushes unbearable, no interest in sex despite hrt. I did a celiac screening last it is positive....pls keep your ovaries if they are healthy especially if you are under 50yrs. 
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