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Uterine Fibroids

Posted , 10 users are following.

Anamaria16
Anamaria16

A CT examination found that I have a large uterine mass with already cystic degeneration. I have been offered a "Hysterectomy" but I have been reading different websites and I am not particularly keen to have this major surgery. Can anyone advise me which kind of options I have and which hospitals I can ask my GP to refer me to ? Thanks.

0 likes, 12 replies

12 Replies

  • Bek
    Bek Anamaria16

    Posted

    Hi anamaria, I had similar problems, ongoing for over a year. Initially they thought I had a large cyst 10x10x8. It kept growing and I ended up in A&E with suspected ovarian torsion, had keyhole and they realised it was a fibroid. 3 months of zoladex to shrink it, but it kept growing. On the 18th August I had an open myomectomy and this is where they discovered I had a leaking degenerated fibroid. It had squashed up all my organs and was protruding out my uterus by 15cm. They were able to drain out over a litre of fluid (which I guess made it easier to remove).

    Anyway a hysterectomy was not an option as I don't have children and would like them. Although I am a complete wimp I cannot tell you how much better I am feeling. I did this through the NHS, but wished in hindsight I had private medical. It took the best part of 10 months, 2 ops and a lot of pain to be sorted. I think had I been private they wod have worked it out better, my 3 months of treatment with horrible side effects was unnecessary, ineffective and gave me more time in pain (most people on this forum know, all this during my wedding, it was not fun). 

    I think the options depend on your age, where the fibroid is located and so on. Can I ask how old you are? Do you know where the fibroid is located? A hysterectomy is not always the only option. I have found this forum really helpful in getting advice. All I know is I should have put my foot down more, it's difficult when you feel ill though. I would suggest requesting a second opinion. Hope that helps,feel free to ask me any questions x x

    • Anamaria16
      Anamaria16 Bek

      Posted

      It is inside the uterus, it is really large. The latest MRI states "bulky fibroid uterus is again seen measuring 22.8 x 11.5 x 14.5 cm. Arising from the posterior myometrium, there is a large intramural fibroid measuring 14.5 x 10.6 x 13.3 cm (previously measured 12.9 x 8.9 x 11.8 cm).

      This mass is growing and I am starting to get worried. Consultant gynaecologist has offered "hysterectomy" but I would prefer to consider other options rather than hysterectomy.

      At present I am reading the website of British Fibroid Trust and I have sent them a couple of emails.

      Other interventions described on this website, I think, if I have understood them well they are only for small fibroids.

      How was it for you this "myomectomy" intervention ? Any serious side-effects of this intervention that have happened to you ?

    • Bek
      Bek Anamaria16

      Posted

      Hi anamaria, I can honestly say the myomectomy for me was a good option. Don't get me wrong I was petrified, but as my consultant said I had no quality of life. I often couldn't walk, was having to liquidise my food and my weight dropped rapidly. 

      Yes the op was painful And I am slowly recovering, but the pain was mild compared to any pain the fibroid was giving me.

      I have been left with a 7" incision in my bikini line which is now healing well. The most difficult thing is not overdoing it. I have set myself back quite a few times. 

      The op itself took a few hours (it is a bit Ida blur) and I spent 3 nights in hospital, although some people go home earlier than this. 

      When they do open surgery they can do it horizontally across the bikini line or vertically towards the bellybutton, it depends on the size, location and skill of the consultant I guess. A vertical cut would need a longer recovery. 

      You will also need someone around to hell you for a few days or the initial week after as you can't do much. Also I got quite dizzy in the shower, so good to have someone there if you feel a little unwell. 

      Cathy is right there are many new options available out there, they may be worth looking into.

      For me a myomectomy was the right choice, however I was not offered any other option. I did trust my consultant completely. There are like all treatments risks involved. I was lucky in one way, I asked the consultant who treated me in A&E if they would do my op and they agreed (however this was the hospital I had been going to for my scan). 

      I only ever had a chance to talk to the consultant properly at my post op appointment. Before that it was nurses, students or registrars. 

      I can't fault my consultant and also after having lots of different visits to the doctors (took whatever appointment I could) went back to the same GP and they got to know me quite well so we were able to discuss things rather then me having to explain my story over and over. I really had to put up a fight though. Don't give up x 

    • Anamaria16
      Anamaria16 Bek

      Posted

      Thanks for your reply. I welcome any kind of information. Thanks
  • cathy_b
    cathy_b Anamaria16

    Posted

    About 10 years ago I had a fibroid that wasn't completely solid and had started to degenerate and at that time the options were hysterectomy, myomectomy or embolisation.  My first consultant wasn't keen on embolisation but I pressed for it and got it as like you I didn't want a hysterectomy.  Although I opted for an embolisation, I did think the myomectomy was an attractive option as it removed the fibroid but it is major surgery and you can end up needing a hysterectomy if things go wrong, but when they started to talk about reconstructing my uterus I think this was the point where I decided the procedure wasn't for me.  The embolisation was ok but the fibroid didn't shrink  much as I thought it would and I still had problems with my periods.  I suppose I'm saying no method is perfect, there are drawbacks whatever you choose.  I think there are other methods on trial too, perhaps involving lasers or sonar techniques so do google it.  Good luck with it all.

    • Kynance1
      Kynance1 Anamaria16

      Posted

      Hi anamaria. Just wanted to tell you a bit about my experience. I had a large intramural fibroid of approx 18x14 and a couple of smaller ones. At this size and the position of mine meant my kidneys were starting to be affected. I went to see a brilliant female consultant who talked me through all options with their pros. and cons. (Sorry to read you experienced a painful abdominal examination, if you are not sure why someone is doing something a certain way just ask and they will explain, also a nurse would/ should be there for any internal stuff!)  This resulted in me having a laparoscopic Hystorectomy after 3 months on Esmya to reduce the size. 

      Probably not the word you want to see on any reply but  if it is something that you have to consider please don't be scared. 

      I'm not sure if you want to preserve your uterus as you want children as that's a different thing but for me having one 7 yr old it was the best option. 

      After considering embolisation (only small shrinkage and I didn't want a blood starved part of my body inside me) and myomectomy (this would have been open surgery for sure) we decided a hysterectomy would be best. I felt the other options were just delaying this procedure and when I said this I could tell the expert agreed. 

      I had this done on Feb 1st this year, in hosp 2 nights, driving in 2 weeks and back at work in 3. Not because I'm superwoman but the skill of 2 laparoscopic surgeons and the right decision being made for me. I kept my ovaries as I'm in my 40's so no menopause and after 2 years of fibroid misery I have never felt better. 

      All in all if the big H is something you want to dismiss because you think it's a big op,  it can be and nowadays is a more simple option. Find a consultant you trust and the worry of making the right decision goes away. 

      Hope all goes well for you which ever treatment you choose. 

  • lesley1605
    lesley1605 Anamaria16

    Posted

    Hi, Anamaria, have just visited this site for first time. I have been diagnosed with a large fibroid 13x13 x12. It is pretty painful and has caused heavy bleeding and I have become anaemic. It can be felt through my abdomin and I look about 7 months pregnant. My consultant has tried to shrink it with medication but latest scan shows no change. My consultant has advised I may need a hysterectomy which would involve a vertical cut because of its location. Have to admit I am scared and not sure what to do. I am almost 46 and he says because of my age is best option. I was wondering what updates there have been in the last few months with you
    • Vonnp
      Vonnp lesley1605

      Posted

      Hi Lesley I just came across these post and I wanted to share my experience with you. About six years ago I had the UAE it did work some fibroids shrunk and some fell off. But about three years after they came back with a vengeance. I had excessive weight gain I thought it was from being a newlywed but my stomach kept growing I looked like I was 7 months pregnant. I finally after couple of years went and seen my on/gyn. My only option was a hysterectomy my uterus was pushed all the way up and I had so many large ones so I had it done. Surgery was longer than expected my dr had to remove a lot of the fibroids one by one in order to shrink my uterus 40%. No lies it was

      Painful they had to give me a bikini cut, 4weeks after surgery I'm glad I did it. It was like I deliv a 7lb baby my stomach is down no bleeding or cramping With a myomectomy and UAE the will grow back. I'm 44yrs old hope this is helpful

  • alice57
    alice57 Anamaria16

    Posted

    Hi Anamaria, sorry to hear about your problems with fibroids. I have had fibroids for about 3 years - the largest is 10cm by 8cm by 8cm. I have had zoladex to shrink them and am considering a myomectomy. I have also tried changing my diet to see if that would help to shrink them. I have been getting worse pain recently and will have to do something. I have read a lot in books and on the internet.

    Perhaps you should consider a myomectomy rather than the drastic option of a hysterectomy. Best wishes Alice

  • patricia27802
    patricia27802 Anamaria16

    Posted

    I am in a similar position. I have a large fibroid and I was told in June 2014 that the only option was a Hysterectomy I said no chance. Next I was given injections to shrink it this was hell on earth as it was an extreme version of the menopause I was meant to have 1 a month for 6 months I only had 3 more then had to stop them as I could not handle the bad off the scale hot flushes which even HRT couldn't shift!

    Then I was offered Endo Abalation the procedure was easy but I put on weight due to fibroid growing bigger and it made my already heavy period even worse. I then asked for Uterine Fibroid Embolsation when I was having a ultrasound scan and the radiologist did an Mri scan to see if I was suitable. By now it is October 15th and my Gyn again said only Hysterectomy I said was I not suitable for UTI then he said in his opinion it didn't work I said I want to try it. He then advised me that they don't do that procedure and I would have to go to another hospital and he refers me.

    So it's took 16 months to get to this point I just need to wait to see Radiology now. And yes I'm not well but I was never going to have a Hysterectomy unless my life was in danger (it isn't) My advice don't let them force you into something you don't want to do.

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