Fibroid problems

Hi looking for advice had a total hysterectomy 5 years ago and removal of fibroids but i have been in pain for 5 years and found out the end of last year the pain was because of fibroids ??????? HOW no cervix or uterus anyway seems I've still got half a cervix and fibroids attached new ones ??? so the hospital that performed hysterectomy sent me a letter saying no need for treatment and no need to see anyone so GP referred me to another hospital

I've got my medical records to check i actually had a total hysterectomy removal of cervix and uterus and thats what it says also on medical records the lab report from operation says no fibroids included and not all of the cervix was removed which i had no knowledge of i also found the scan report before i had the operation saying large fibroids

So what happened to the original fibroids?????? they can't disappear

I have gone to another hospital January this year where i have been fitted with a catheter as i can't pee because of the new fibroids attached to the cervix which the consultant is fairly amazed I've got a cervix

In the meantime I'm waiting to see the consultant at the new hospital on the 20th

So this weekend i had real bad tummy pain i had to go back to the old hospital who did the original hysterectomy they removed the catheter and replaced with another

They also performed a scan and came across the old fibroids as big as grapefruits thats now stalked onto my other organs that effecting my blood supply and lungs due to they size i stayed in hospital overnight the original surgeon who performed the hysterectomy was asked to see me she kept her head to the ground and apologised reluctantly and said she had no idea and she can see from by large book of medical records of all the times I've attended hospital over the 5 years with pain heart palpitations breathing problems all due to the old fibroids attaching them selves to my other bodily parts

She then said there was nothing she can do as its too complicated now

I was in tears and said lots to her believe me as i said i have a appointment with the new hospital on the 20th of this month but I'm just totally lost

[Cammiebabe]

Hi Mand-54

I’m so sorry to hear you are going through this. This is awful. You had a total hysterectomy and still have fibroids. I’m so angry for you right now that because they just think a hysterectomy is the answer to all problems and don’t realise what a big decision it is to have your reproductive system removed only to have not solved the problem !!! And then it not being correct.

I guess If you still have your cervix. You can have new fibroids that are growing on your cervix. However I just don’t understand how your original fibroids are still there after the hysterectomy.

I suffer from huge fibroids myself. Since the end of feb I have been having severe abdominal pain and abnormal prolonged bleeding. On Thursday this fleshy tissue is hanging out of my vagina. I went to a&e and the doctors said it was a prolapse and that I need to be referred but I am not convinced at all. I Personally think it’s my dead fibroid I had embolised 17 months ago trying to exit my body. It looks like chicken fillets and smells really bad. It’s just hanging there. Everyday a little more hangs out. But now all my pain is gone !!! No pain at all.

I speak to my go tomorrow and my gynaecologist on Wednesday so hopefully I can get seen and have it removed.

I’m lost too. You’re not alone. I hope that you will get some answers soon.

Hugs

[Hidden in reply to Cammiebabe]

Hi Well apparently the surgeon did not remove my large fibroids during the hysterectomy and they have stalks on and they have stalked into another part of my body living off the blood oxygen and surviving well and growing bigger hence all the pain for 5 years

I really feel your pain it must be hourendous having to push it up that must be so uncomfortable for you and day to day life. I really wish mine would die off but nope there growing on some thing thats feeding them

I hope they get it all sorted

[Cammiebabe in reply to Hidden]

Wow. That is just unbelievable. I wonder what can be done ?? Can you not have embolisation to cut off the blood supply ?

These fibroids sure know how to feed !!!

Well I could be wrong about my dead fibroid trying to expel from my body but I can’t think what else it could be. I have no symptoms of a prolapse. Doesn’t look like what is coming out of me is an organ that should belong inside of me. Plus I had a transvaginal and ultrasound scan on 29th March. Surely that would have picked up a prolapse on any of my organs right ??

But yes. It’s absolutely horrendous. It’s horrendous I even have to wait. It’s horrendous that the hospital sent me home and said I have to be treated in a clinic.

I’m glad the pain is gone. Because I wasn’t coping well with that. It was so exhausting.

I am hoping I don’t have to have a hysterectomy. That really scares me. But I guess I will have to if it solves my problem. As long as I get to keep my cervix and my ovaries. I think I will be okay with accepting that idea.

I bathe in magnesium salt baths for a least an hour at least 4 times a week.

I drink fresh ginger, turmeric and lemon tea everyday. And I was going to start acupuncture treatment next week but I will wait now till this alien is gone from me.

I stopped using a hot water bottle because I developed the hot water bottle rash for it being to hot and applying directly on my skin. But all these things helped me cope with my pain.

Keep us updated with it all. I really hope you get it sorted sooner rather than later !! Keep pushing and pushing XX

[Hidden in reply to Cammiebabe]

Thank you i hope you can get some relief soon and you eventually get something sorted keep me posted Women's problems are so bad periods child birth then menopause its not good but we carry on don't we Take care x

[SraB]

Hi,What a story. Thank you so much for sharing, we can learn a lot from each other stories. I never thought they could leave the fibroids. We all need to be asking for our medical records.

I am also struggling with fibroids. Looking for treatments.

I hope they come up with a good solution for you in the new hospital. Finally after all these years.

I also confronted my GP about her mistakes with me, I saw how she just kept looking at the floor. No apologies.. I believe it was not her intention, just bad mistakes.

Don't forget to make them check iron levels, (since fibroids are still taking your blood).

Were you taking hormones all these years?

[Hidden in reply to SraB]

Hi

No HRT at all during this time so fibroids been living of blood oxygen all this time

I did manage to get my medical records 2013/2014/2015 all states fibroids scans and ultrasound and sizes but the lab report after my operation says not all cervix was taken and no fibroids i never had any cervical smears as i was told they weren't needed but my Mum and Sister both had cervical cancer

So I'm pretty worried as i thought mine was gone

Its funny how medical folk look away when they've something wrong

Hopefully where get sorted but its a complete nightmare

If they do operate on me it be like having part of a hysterectomy again the first one was bad enough

Well Tuesday i see the consultant so will find out i have a catheter at the moment which isn't too pleasant but at least i can go fully