OVARIAN FIBROMA: Hello everyone, I am sorry for... - My Ovacome

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OVARIAN FIBROMA

edysia2 profile image
14 Replies

Hello everyone, I am sorry for brief post but I am really weak due to my illness and is very hard to write.

I would like to ask if anybody here has experience of treatment/removal of OVARIAN FIBROMA.

I do have fibroma on my right ovary which causes me a lot of pain ( right ovary) but pain is spreading to the left side unfortunately. I have extensive history of cancer, including ovarian and breast cancer in my family.

I have visited a surgeon at UCHL (London) but they refused to remove it as I do suffer from hypothyroidism which is not under control( I do not respond to thyroid medications at all, hypothyroidism was and still is a long battle... the story is so long and I do not want to bore you with the details)

So I am in a very bad general health state and have this fibroma that needs to be treated.

UCHL refused and I do not know where else to go. I live here but I have not much experience with UK hospitals as I am not form UK originally. I am in despair and I do not want where to go or turn.

I am very scared with the entire situation as I do not have any family or real friends to support me with all this, sadly my parents passed away a few years ago, I came from abroad to UK and settled, I am not able to go back to my own country because I lost all my connections and family home there. I lost my career due to illness... Illness caught me here in this impossible situation. I had a very bad experience with doctors so far, I do not want to be pushed away and left with no help again.

CAN ANYBODY SUGGEST ANY HOSPITAL OR GYNECOLOGICAL SURGEON PLEASE SEND ME A MESSAGE. I WOULD BE VERY THANKFUL FOR ANY SUGGESTIONS.

WOULD YOU RECOMMEND HAMMERSMITH HOSPITAL? QUEEN CHARLOTE'S & CHELSEA HOSPITAL, ST MARY'S HOSPITAL OR ANYWHERE ELSE?

I live in Leicester but I would travel if I found a doctor that is experienced and ready to deal with a risky case.

THE TUMOR WAS BENIGN A FEW MONTHS AGO BUT THERE IS A RISK OF MALIGNANCY, ALSO IT DOES DISTURB WITH TREATMENT OF HYPOTHYROIDISM,AND I AM STUCK IN A VICIOUS CIRCLE OF RAPIDLY DETERIORATING HEALTH.

PLEASE, PLEASE,PLEASE HELP ME. THANK YOU IN ADVANCE.

edysia xxx

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14 Replies

Hi Edysia .. You are amongst friends here. I would suggest ringing Ovacome's helpline later on 020 7299 6650. The nurses will be able to listen to you and help you to make decisions about your possible choices. No doubt friends here will post to you. Sending you all good thoughts .. Love Tina x x

edysia2 profile image
edysia2 in reply to

Thank you so much for this suggestion Tina. you are so lovely. I will phone the helpline number for sure. Thank you for good thoughts. Love to you too . Edyta xx

edysia2 profile image
edysia2 in reply to edysia2

I will talk more soon. E xx

charlie12 profile image
charlie12

Hi Edysa

Welcome , you have just found lots of new friends .

This sounds like a sad situation , poor you.

As well as calling Ovacome , which I would recommend...you may also wish to ask the surgeon you saw originally to reconsider his or her decision...perfectly reasonable. You could also ask for a second opinion , either in the same hospital or in another.

If what you have is a fibroid , then yes I had several...as well as the ovarian cancer. They tend to shrink after the menopause ( not sure how old you are) , there are also treatments that can shrink or destroy them. But we are not doctors .

Take care

Love

Charlie xxx

edysia2 profile image
edysia2 in reply to charlie12

Hi Charlie

Thank you so much for your answer. I just woke up, slept only 2 hours, but I wanted to post a quick reply and i will talk again later.

What I have it is not a fibroid, this is fibroma, it is a solid mass attached to the core of right ovary, fibromas are much different in structure to fibroids.

I would ask surgeon whom I seen originally, but I cant as the appointment was via chose and book system , I live in Leicester and appt. was in London. He discharged me immediately ... so I cannot ask again. I would not want to speak to this surgeon anyway, he was cold, distant and indifferent..

I am trying to get second opinion and fighting GP for another referral to another doctor but I need to know first who would be good to see, I am scared to see the 'wrong' surgeon again. I will certainly phone the helpline number for advice.

love

Edyta xxx

Hi Edysia,

Fibromas and fibroids are the same.

Sending you my best wishes for a good result love x G x

edysia2 profile image
edysia2 in reply to

Thank you but they are not the same thing, otherwise would be slightly less scary. He is a basic info on fibromas

en.wikipedia.org/wiki/Ovari...

Exx

in reply to edysia2

Hi Edysia,

I'm sorry I do see your point, your link is "ovarian fibromas" which is different than fibroids if you just put in fibroma on wiki it comes up with fibroma and fibroids in brackets which isn't the same as "ovarian fibroma" so I stand corrected, and can see your concerns on this....you could give the Ovacome helpline a ring and ask their advice tel 0845 371 0554 best wishes love x G x

P.s. I have just read your comment on another post and it seems you have already rung the helpline, (only on a different number) and they couldn't help, I am so sorry and wish I could help, I hope someone will come along soon that is familiar with you condition. xx

Londongirl100 profile image
Londongirl100

Hi, I'm having one removed and its with Thomas ind and prof Tom bourne. The latter is highly respected in ultrasound - you perhaps should get a second opinion with him. Google him. Good luck x

Londongirl100 profile image
Londongirl100

Oh and fibroids and fibromas are NOT the same!!! An ovarian fibroma is a solid tumour - rare and usually benign.

Stacey123 profile image
Stacey123

Just seen your post and wondered how you were getting on? I had a 10 cm fibroma from my right ovary 5 weeks ago and it's all gone well, the pathology results are back and it's benign, hope you've managed to get yours sorted, it's such a horrible and worrying time xxx

edysia2 profile image
edysia2 in reply to Stacey123

Thank you for your reply Stacey. I am still not sorted. I am in a bad state really, my hypothyroidism is still not resolved and I am having more pains around my right ( fibroma) and left ovar, also more spotting.Can you message me who did your surgery, please. Wishing you speed recovery. E xx

s8625 profile image
s8625

Hi there

I'm not even 30 yet and have been diagnosed with ovarian fibroma on my right ovary which i'm awaiting surgery to have this and possibly my right ovary removed. I've had an mri and Ca215 blood tests which all indicate that it's benign but can only know for sure once they actually remove the fibroma. The fact that all the procedures have been non urgent pretty much indicate that the doctors don't think it's the big c plus the little literature I have read also support the theory that ovarian fibroma are almost always benign. Worrying nevertheless specially as its a rare (though generally benign tumour) Any experiences of women with ovarian fibroma would be greatly appreciated as its such a worrying time - just want the op and results over and done with. Initially they thought it was a perforated fibroid and were planning on just monitoring it with blood tests but were not sure. Funnily enough i wanted it removed and was told it was highly unlikely it was cancerous l. When i questioned whether it could turn cancerous i wad told that it was just tissue and anything in the body could turn cancerous. Anyway the docs then did a second ultrasound and they decided it was an ovarian fibroma and ideally it should be removed. But also nor to worry as ovarian fibroma are almost always benign. I do find that the doctors are vague and are not very helpful. Would very much appreciate if other women with ovarian fibroma would share theur experiences as there's so little literature out there! X

in reply to s8625

I am 31 year old. After 6 years of infertility and painful periods/abdominal pain I went to my primary care doctor. After doing a transvaginal ultrasound they said it was a solid mass and needed to be removed. My CA125 blood test came back normal but waiting 2 months for surgery took a huge toll on me. Anxiety is a terrible thing. Surgery took 4 hours instead of 30 mins like anticipated and the Fibroma was the size of a softball. I had a unilateral oophrectomy and they also removed my left Fallopian tube also.  I waited another week after the surgery to get the results which were benign thankfully! It was a terrible experience! I now suffer from terrible anxiety because they have no idea what caused the tumor and I fear my right ovary will suffer the same fate. Anyone else have this experience with anxiety after ovary removal? I read Fibromas are rare but I dont know much about them and the doctor did not give me much info.

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