Large fibroids, waiting for consultant appointment

Posted , 8 users are following.

Hi just wanted to share my story, about 2 years ago it was found I had a cyst on my womb and fibroids. I was put forward for ablastion, as I had tried everything else.(Tranexamic acid, mirana coil). I was 48 but my consultant felt I was too young for a hysterectomy!. I was put on esyma to strink fibroids before ablastion, only took for about 6 weeks, don't remeber any bad side effects.Post opp I was fine, very quick recovery.

Fast forward 2 years, went to see contience nurse, as I was leaking urine, and could not hold my urine at times. On the scan it was found I had two large fibroibs, that was a month ago, I have had so much pain recently and yesterday I spent 9 hours in A/E as they thought I had a kidney stone as I was passing blood. Apparently my fibroids are breaking down hense the bleeding and the pain, pain killer were not helping the pain. I am now counting down the days to see my consultant, I'm going for a hysterectomy, I just want my life back and to be pain free. Do they always put you on Esyma pre surgery? and has anyone else had bleeding from fibroids?. xx

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  • Posted

    I'm not ure smya is the pre surgery drug (nor I may be getting mixed up that you have to topt a mnth or so before UFE) but implants like Zoladex & Prostrap ar motly used pre surgery for reduction.

  • Posted

    Hi Just wanted to share my experience today, when I saw my consultant. She clearly had not read my notes, as she asumed I was suffering with heavy bleeding. I explained this was the case as I had ablastion two years ago, and has since commenced HRT. The results I no longer have heavy periords, and my type of HRT stops the brake through bleed each month. She then went on to say she did not think a hysterectomy would stop the pain. I explaned I am suffering with pelvic pain, low abdonimal pain, urine urgency and constipation. I also explained I spent 9hrs in A/E three weeks ago because my pain relief could not control my pain. I asked what she thought the pain may be?, she said constipation/muscular. I was dissapointed and found the whole this very patronising, I'm a nurse and I know the differnce between constipation and extreme pain. I have now been sent for a CT scan, even though I had a ultrasound showing multiple Fibroids according to my gynanie today, I was told I had two large fibroids sitting on the left of my uterus. Has anyone else had a similar experience?, thanks in advance xx

    • Posted

      I am so disappointed for you. I have had bad experiences with consultants in the past too. Both times I went back to my GP and things were resolved through them. It's really bad when you are not listened to - and very frustrating. At least you are having another scan - so there must be something that is making the gynae ask for this to be done? Who knows! Sometimes they just can't communicate to their patients - saying one thing but meaning another! I would have thought her knowing you were a nurse would mean better treatment - as you are more aware of how your body should work! My fibroids are affecting my left side/ spinal nerves/ bowels - so I know how uncomfortable that is! Let me know how you get on!

    • Posted

      Thank you, it really helps having someone who understands, what I'm going through. I just have to focus on the next scan and I will be taking a list in with of my past medical history and treatments so far. and a clear plan of why I need surgery at this stage. I will keep in touch, how's things with you?

    • Posted

      I have been fortunate this time - as my consultant is very kind. I have my surgery booked in for 21st April. I think my MRI scan was what cleared the way to my hysterectomy - everyone who has seen it says the fibroid is huge - and the operation the best solution to sorting. Admittedly I had 3 months of physio prior to this as I thought I had hurt my back in a fall!!! One thing does perplex me in your case is the fact your gynae is a woman. Surely she must understand to a degree where you are coming from with pain..... My gynae is a man - and I was really worried he would be a bit pig headed like a gynae I saw years ago. But he wasn't. You never know what you are going to get! It sounds like you are going to have to shout to get the treatment you need - but hang in there - be strong and you will get there!!!

  • Posted

    Hi all just had my follow-up appointment with my consultant. I felt more prepared this time, I had a long list of the treatments I have recived over the years. As I felt the consultant was very dismissive about the amout of pain I was having. Following ablastion two years ago,the bleeding has reduced,but the fibroid has continued to grow, I was sent for a CT and my largest is now 6cm!, but is degenarating. She agreed this would be my main source of pain, but said she could not confirm it would

    stop my pain, following surgery;I think it will personally. I aim to keep my ovaries but

    the rest will be removed abdominally due to my swollen uterus and the fibroibs. Just waiting for a date now, can't believed how relieved I feel to have a plan in place. its helping so much having this site, to vent on and share experiences.

     

  • Posted

    If I had to do hysterectomy... I would tell them to leave my cervix. Supracervical. That will prevent them from having to take your bladder down from the cervical wall, preserves your nerves that are connected which could cause sexual dysfunction, and prevents prolapse. I don't get why GYNs don't automatically tell people that. Instead they will say there is no correlation to sex, cervix and uterus. That is not true for me. Also, it's a shorter procedure for them just to remove it all. But, you have to do what is right for you and preserve as much as you can- ESPECIALLY your ovaries. 

    Good luck

    • Posted

      hi thank you so much for the information, I was not aware of this. But because I have previously had an abnormal smear, my gynae advised it would be better to remove the cervix, but I will do my research before I have the operation, and I will be keeping my ovaries. 

      Thank you smile 

    • Posted

      Hi, my situation sounds very much like yours. My surgery is set for May 16th. Please keep me posted on your progress. When is your surgery? I'm very nervous.

    • Posted

      Hi my date is the 17th June, so a month behide you. I'm nervous as well, had to call 111 on Friday as started to bleed and had a different pain. But spoke to the doctor and agreed I would just sit it out. My advice would be research as much as you can, so your prepared. I recently joined the hysterectomy group on here. Because I wanted to research the removal of the cervix the prone & cons. How about you?,

    • Posted

      Hi, I just recently joined the groups on here as well to learn as much as I can. I am reading so many great/positive stories as well as a few horror ones. I would like to chat with you more about your symptoms to more or less compare our issues.  I feel better knowing that this is common and so many women deal with it. I would be going insane if I had to wait until June, since I already am having to wait until May 16th. Lets stay in touch and kinda help each other along the way. Be safe and stay well

      ~Reece 

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