Frieda the fibroid, and TAH with ovaries removed experience – Donna’s story

I knew I had a fibroid along with a phobia surrounding doctors, needles, hospitals etc. At around 41 I started experiencing pressure in the abdomen and a need to urinate more frequently, I ignored it. A routine medical picked up blood in my urine which culminated in an ultrasound and a cystoscopy which resulted in Frieda the fibroid being found. The medical team said it could be that I would make it to menopause and Frieda would begin to shrink, at this stage she was around 5cm.

At 49 Frieda had started to make me look really bloated, twice in the morning after sleeping I was unable to urinate without running a warm bath and immersing myself in it. When I look back she was making me feel horrible, my life was horses and competing along with the hard physical work of mucking out stables etc. After visiting hospital and several internal examinations at 13cm now it was decided that she would be monitored.

I don’t know if it was the examinations that set it off but within 24 hours I felt ill, ill like I had never felt before and I was unable to eat. I ended up in A&E and the doctor gave me antiobiotics and said I should contact gyneacology on the Monday because Frieda needed to come out, she was too big. I was given an injection of GNRH which would last six months and a hysterectomy was to be scheduled when Frieda the fibroid had shrunk.

Wow, immediate menopause, no pain but not a pleasant experience. That said Frieda did shrink and I began to feel great, so great that I decided because of fear that I would not have the operation and that perhaps the menopause would come and shrink my fibroid. Of course it grew back and at 53 although the menopause had come along so had the distended abdomen, difficulty urinating, constipation, tiredness and at times pain in the leg and hip and difficulty walking.

Back to the doctors, hip X-ray nothing of note followed by ultrasound and I could see the radiologist looked concerned. Apparently I had another growth and she was unsure if it was coming from the ovary, this was on a Friday. The following Monday my doctor telephoned and said that I should prepare myself for the fact that it would need to be removed and I was being referred to a consultant and an MRI was booked. Apparently the new growth looked cystic and it had solid components making it complex. This threw me into a state of anxiety and two weeks later I was having an MRI along with some injection into my vein of dye.

Within a week I was back with my consultant who said that they had actually found three growths now but the one that looked worrying did not correlate with my CA125 results and they were querying a degenerating fibroid. This made me feel a bit better as I had become convinced I had ovarian cancer. I was told that a CAT scan was now needed and I received a bottle of iodine type stuff that I was to mix with water and drink before my scan which was to be of the pelvis, abdomen and chest. That was it I did have the C word in my mind then and they were thinking it had spread, back to extreme state of anxiety. CAT scan undertaken, dye drank and another injection into the vein later I was back with consultant. Wow, she was pleased with the CAT scan but Frieda needed to come out. She was now 15cm x something along with two other growths of 8cm and something else. I had to pluck up the courage and a date was received whereby I had less than a week before I was due to go in for my TAH and removal of ovaries.

Run up to op. was a nightmare because of the extreme state of anxiety that I was in just bursting into tears at absolutely anything. I ended up telephoning my doctors surgery hysterical and I was prescribed 2mg of diazepan to be taken three times a day. I never take tablets but these were a godsend and put my head back on my shoulders again allowing me to cope.

I am now 7 days post op. at home and feeling great. I had googled every conceivable article relating to my condition and frightened myself to an extent that I had never known and never want to know again and why? There was no need. At no point right from waking in recovery did I experience any pain whatsoever.

The truth is the worst things for me in order were, the needle going in my hand prior to going into the operating theatre, the thought NOT PAIN of having the drain tube and catheter in and the tiredness I felt on day three after the op. when I was unable to shower myself.

Do not focus on the negative stories ladies. For me this really turned out to be no huge ordeal but I should have had the courage to do it sooner and I would not have put myself through all the turmoil and discomfort over the course of many years that I did. Fibroids are insidious horrible things and if they grow too big they rule your life, get them out. I am feeling better already – goodbye and good riddance Frieda!!!!

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2 comments

  1. Hi CAroline, lovely to hear from you and about your experiences. Fibroids are the pits, especially when they get too big and we seem to have gone through the same roller coaster of a ride. You are so right about the euphoria after the operation and feeling better than you actually are. I posted this quite early on and then at week five I went downhill. It was my own fault because after two weeks I was out mucking out stables and doing far too much. 3 dogs, 7 horses, 4 cats and a pet pig in the middle of nowhere do not help!!! I went to the doctor and he said I probably ripped some internal stitches or popped an adhesion and it did hurt. I managed three days doing very little and had to have help in to do the animals. Feel so much better again but it did set me back a couple of weeks. All in all like you the op. was not as bad as I thought it was the run up to it that was truly awful. Recovery is difficult because it is hard to know how much you can do and for how long. I am used to lifting heavy things and physical work but there is still no way I feel anywhere near doing that. Hot flushes/sweating ha, ha!!! I am having this bad, really bad. I am not keen on HRT so am just waiting for them to go away but they are awful.

    We have reached the other side my friend and yes it was a truly high hurdle to jump but we have done it. Be careful as you recover and all the very best to you, I understand what you are have been through and it will continue for a while yet but the worst is over!!

  2. Well done to you! I found the thought of the operation was so much more terrifying than the actual. I had a huge fibroid removed 20 days ago. It had made me look 24 weeks pregnant complete with all the needing the loo and pain in the legs and hip symptoms. Not to mention the bloating and the fatigue. Not really the look I was going for at 52! The Drs advised a total hysterectomy but I asked if I could keep my ovaries and they ended up doing a Laparoscopic subtotal hysterectomy. I was so tense about the whole thing. Being put to sleep, being mucked about with and not knowing how I would be when I woke up. It was all just too many unknowns for me to remain calm about. I went into a numb shock mode a few days before the operation. My body seemed to Function on autopilot. Surgeons and anaesthetists came and spoke to me but it was so hard to hear and process what they said? I just wanted it to trust that they would do their thing and that it would be over and done with and the whole monster fibroid beast out and in the bin.
    Afterwards was pain free. The drugs I had meant no pain at all. When the morphine wore off I was achy but the pain relief I got meant I could control what I needed. Movement got easier. To begin I felt as if I was back to normal. I think the relief of having had the operation makes you feel quite high. Overdoing walking,bending, automatically sets of an uncomfortable crampy feeling in your tummy like period pain. It’s so difficult not being able to be busy! I have too much time to think and feel sorry for myself and I hate asking for help. I not good at being needy but I’m learning that friends and family want to help and they feel better if you let them. It’s tricky to stay positive after such a big ordeal. Even though everything has happened and gone ok I still feel weepy and hormonal out of the blue sometimes and I’m boiling in the middle of the night. After my six week check I will see if my ovaries have calmed down and are producing the right amount of hormone for me because at the moment I think I have menopausal symptoms … HRT might be an option but I think I need to see what’s post op shock and what’s my new normal before I decide. Everyone has a different experience but it seems that most people feel so much better afterwards and do not regret having the operation. I feel relieved it’s all over and positive that it was the right thing for me to have done. I’m still adjusting to life post fibroid and post hysterectomy. It’s a big hurdle but one I’m pleased I’ve jumped.

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