Fibroids

[welshcat]

Hi I've just been diagnosed with fibroids for heavy blood loss, swollen stomach, pain in the lower right pelvic area, my doctor also arranged an appointment for me to see a gynecologist. Why do I need to see a gynecologist if I've already been told I have fibroids :/

[bantam12]

As the fibroids are causing problems you may need to have them removed so the gynaecologist will decide.

[MummaT]

Heavy blood loss, position, size ect. I found I had one on my pregnancy scan, it grew with my baby and ended up the size of a grapefruit covering my cervix. I was down for a section to deliver but they decided it was so close to where they would cut that a natural delivery was safer. I suffered heavy flooding for 11 months after delivery and despite taking numerous tablets to stop the bleeding. They investigated again to see if they could remove it about 13 months on and It was inside the muscle wall of my uterus and they couldn't remove it, so have had to wait it out for it to die off. It grew so big it eventually out grew its blood supply, very very painful whilst it degenerates. Three years on and it's calcified and the size of a pea.

Xx

[Alex23 in reply to MummaT]

Thank you for sharing your experience, that gives a lot of hope that it degenerated and ended up the size of a pea...naturally!!! It is so nice to have some good news, I keep searching the internet as to what happens when the fibroids degenerate (I have one the size of a large grapefruit and it is starting to bleed now between periods for the first time in 7 years of having it) so it really hurts and is it the degeneration that induces the bleeding do you think? Is it why the bleeding happened for you? They said mine would be difficult to remove but I didn't understand where it was in the wall...

There is NO information out there about what happens when it degenerates for outgrowing its supply (mine is according to MRI scan but no symptoms yet) . COuld you please if you are still around and willing, expand on how it happened to you over the time it disappeared? Thanks a lot in advance!

[JJAY75]

Hi,I also am experiencing similar symptoms to you since March..took at least three months to get to be seen by gynae...fibroids have been diagnosed by ultrasound..however recently I have been informed MRI scan is a better tool to see where the fibroids are,their type and size so I am having this done on Monday in a possible preparation for uterine fibroid embolisation (a less invasive procedure) than the total abdominal hysterectomy that they have scheduled me for as my bleeding and uterus size has continued despite many medical hormonal therapies,coil,etc so I am now unfortunately facing the possible complete removal of fallopian tubes,uterus and cervix..hence I am firstly checking out my suitability for this other procedure (which my gynae says may still end with hysterectomy if the ufe doesn't work or I am not a suitable candidate for it) I just want my life back as it been on hold- gushing bleeds,pain ,bloating etc I has just crept up on me getting worse this past year -so it will be good for you to get your fibroid situation checked so that you can make informed decisions..also I have had to find most of my info on fibroids and treatments on line ..there doesn't seem to be much help or info on the subject from GP or gynae..research it yourself so that you can get the best treatment that you deserve.Best wishes to you.

[Chandmoon in reply to JJAY75]

Hi

I'm sorry to hear about your health problems with fibroids and can very much relate to all of these symptoms.

I had UFE last year and this unfortunately didn't work for me and my symptoms became worse I didn't get any support after and had to wait months too see gynaecology. Prior to having this done please enquire about the size, type and location of the fibroids. My largest one was around 10cm by 9cm. I read that UFE is not suitable for fibroids larger than 7cm. Mine only shrunk after 6 months by less than 20% although the average is 60%. The procedure itself although has a 90% success rate and even though it did not work for me may do so for you and worth a try prior to considering drastic surgery. I am waiting for a myomectomy now as like you the pain and bleeding is severeand impacting my life and everything is on hold. Hormones haven't worked for me and I'm severely anemic all the time.

I hope you look into everything first and make an informed decision. Don't be afraid to ask questions. I wish you all the best.

[JJAY75 in reply to Chandmoon]

Hi,thankyou for your comments.Shortly after my last post I had more major bleeds which basically were getting to the point of me becoming seriously anaemic..somehow my haemoglobin levels remained just within normal ranges but mentally, physically and for my family's sake I ended up on my last hospitalisation end November pleading with the gynae team to take the problem out..my fibroids -some of which were 7 cm ( prostap jabs hadn't helped reduce them) apparently there were polyps too which contributed to these continual major bleeds..anyway within a day I had a total abdominal hysterectomy..as much as I feared the surgery and possible after effects I knew I had no life with these fibroids etc bleeding all the time and I got refused the UFE...which looking back was glad about as I believe it would have prolonged my problems..anyway everything got took-yes it is a hard op to recover from but now I go out without fear of bleeding out everywhere and anywhere and my mental health has improved from those continual fears and pain from fibroid pressing on spinal nerves etc.the medical hormonal treatments including coil didn't help but hindered me getting a resolution to the severe bleeding which got me admitted to hospital at least five times from Sept-November..I got to know the staff there real well and they said simply "you can't carry on like this.." Which I knew they were right about.My journey continues and day by day feel some stronger -a difficult decision but one that I really had no choice as my options were no longer available.I wish you well on your journey with everything..I just wish there was more info on period issues and gynae problems more widely available- so that things could be sorted quicker and help you realise that there may be an issue so that it doesn't need major surgery hopefully to resolve it..Take care and best wishes,kind regards.

[Yvonnehardy1 in reply to JJAY75]

Hi iv also got fibroid im un so much pain for last year pevic pain my spine hurts so bad its evey day all day the hospital said they dout its the fibroid causing the pain but its only started scine i got diagnosed last year

[JJAY75 in reply to Yvonnehardy1]

I completely understand the issues...having ended up with a total abdominal hysterectomy in the end as my bleeding was so bad that I was totally housebound for nearly all of 2018.Now I am out and about without fear of major bleeds... My only suggestion is to keep on at the medical team that you are under so that they can come to some sort of plan for managing your pain etc as I found without my continual badgering they would have left me in a lot of pain and blood loss which was majorly affecting my quality of life.Use phrases like "quality of life is being affected" and they will and should realise that this is really needing sorting as soon as possible,NHS or not, you do need support with your situation and pain issues as it is not going away and not leave you not knowing what is happening and left in pain....It took numerous calls to the gynaecology secretary and numerous visits to A and E ,but eventually I got the help,but not without a fight unfortunately, something you don't need on top of being in pain.My very best regards and wishes to you on your journey and hope that this pain issue etc will be resolved ASAP in the outcome you will be happy with.Take care.

[Yvonnehardy1 in reply to JJAY75]

Thank you x

[DancingGirl28 in reply to Yvonnehardy1]

Hi, I’m glad to have a group who can relate. I am in agony during my periods, that it affects my driving. I suspected fibroids, and now have had that confirmed

[Very_sad_lady]

Does anyone know if there is ANYTHING that will help stem the blood loss? I can’t get to work or leave the house as bleeding so heavily, feel so exhausted by it?

[MrsEh in reply to Very_sad_lady]

Hi, I can totally understand how you feel as I suffered exactly the same until my doctor prescribed Tranexamic Acid: 6 tablets a day for 4 days each month and they’ve been an absolute godsend. I’d easily say it’s reduced my loss by half.

[L25JCW in reply to MrsEh]

I wish the tablets worked for me. Waiting for a hysteroctopy. My periods are so heavy. Only Ultravon seems to work.

[AngieGat]

They didn’t work for me either. I’ve had 3 blood transfusions so far…