Large Fibroids

[joyann1]

I need to schedule my surgery for my large fibroids. Its been a few months ago since my doctor told me. But i been so scared and avoiding it. I have no one to help me with my boy and to help me during my recovery. I knew something was wrong when i had so much blood and the pain was so intense. I thought I was having a miscarriage.

[Nathalie99]

Hi joyann1,

Are there any other options?

I was at a point where I already made a decision to get the operation done but then was advised by a good gyneacologist that it is a last resort.

There are things that could go wrong, there are side effects and any operation is a risk.

There are other treatments that work even for large fibroids, like the hormonal injections to shrink them, or less invasive procedure of uterine fibroids embolisation (stopping the blood flow to the fibroids so they shrink).

If you could try those other treatments that means you don't have to worry about recovery and having someone to take care of you etc....

[joyann1 in reply to Nathalie99]

I'm looking into it. My doctor said my other option is a hysterectomy or just numb an area and be awake for the surgery. I panicked a lot worse and cried more. When i had my other surgeries it didn't affect me as much. Now it does

[Joridley]

Hi Joyann, have you tried Esmya it is a 3 month course of tablets. My 3 fibroids shrink from 8cm to 1cm. They grew back 3 years later however I have just been prescribed another course and have been told that due to my age they are unlike they will grow back again.

[Alaine1 Administrator in reply to Joridley]

These have been stopped as there was the risk of liver problems that hadn’t been previously detected during the clinical trials phase. In most cases the liver problems resolved once the drug was stopped but there have been 3 cases of women needing a liver transplant. However this wasn’t a common and I stress that most cases of liver problems detected resolved on their own without needing further treatment. If you have had this drug previously and are worried please contact your GP or gynaecologist.

[Joridley in reply to Alaine1]

Esmya can be prescribed provided you have a liver function test before during and after the course. I was prescribed a course last Wednesday at UHND.

[Alaine1 Administrator in reply to Joridley]

Most hospitals have stopped prescribing it indefinitely even to previous patients. Certainly the hospital I attend in central London has. It has been recommended that it shouldn’t be prescribed to any new patients unless they meet the very strict criteria put in place. As you have previously been on this drug before the restrictions were put in place and suffered no problems with your liver you have been allowed to have another course but the prescribing of this drug is now very different to when you were first put on it. It is now only usually prescribed for moderate to severe fibroids but only when a woman isn’t eligible for surgery. As mentioned previously by Nathalie99 there are other treatment options that have a better safety record and are routinely used by gynaecologists

[Joridley in reply to Alaine1]

Thanks for your reply the information is very confusing. I was told that a hysterectomy should only be a last resort in that there can be lots of post op problems. I was also told that the hormonal injections had lots of side effects including hair loss, plus the UET is not available on the nhs and I can't afford to pay privately. I feel happy on esmya knowing that I will be having a liver function test every month.

[Alaine1 Administrator in reply to Joridley]

I’m on the hormonal injection zoladex long term for my endometriosis (keeping it at bay) and as a last resort treatment for adenomyosis as I’d failed every treatment tried. I’ve felt very well on it especially as it has stopped the 3 week very heavy periods with flooding and debilitating pain. I used to only get a weeks break before the next one. But again zoladex wouldn’t usually be used long term but I’m under the care of an excellent endometriosis specialist and have other long term chronic pelvic pain conditions alongside other chronic illnesses. The only thing it hasn’t helped with is the fatigue but I think this is a factor in most chronic conditions. I sometimes use the term misery loves company 😁

[Joridley in reply to Alaine1]

Glad zoladex is working for you. Thankfully I don't suffer from endormetriosis, are you saying it also works on fibroids? When I took my last course of Esmya two years ago from 3 fibroids shrink from 8cm to 1cm and I am hopeful the same thing will happen this time. I am only a week into the course and my symptoms including breathlessness and pelvic pain have already subsided so I am very happy!

[Alaine1 Administrator in reply to Joridley]

Zoladex or it’s equivalent (some hospitals use prostap or another) can be used in fibroids but will be used for 3 months. As always this is guidance only and in some cases it might be used for for the maximum of 6 but it would be carried out on a case by case basis. Many women won’t try this as an option as zoladex and prostap both have a bad reputation for side effects. I’ve had very minimal side effects so I’d always say to others give it a try.

[strongmouse]

Hi joyann1, I had a hysterectomy for fibroid quite a few years ago because of bleeding. It went well, but you DO need help afterwards. As others have suggested check out if there are alternatives.

If you need to have the operation then find out all you can from other people who have had it so that you can trust your gynaecologist's expertise and know what to expect afterwards. Never be afraid to ask questions. You have a right to know about the options available.

If you do have a hysterectomy then it is really important to give your body the time it needs afterwards to heal and this will lessen the likelihood of complications. All operations have some risk, but I am happy that I had it done.

The sort of help you might get depends where you live but don't be afraid of asking voluntary organisations or seeking help from wherever you can. Sometimes patient advice organisations can find appropriate local help.

Loosing a lot of blood isn't good for you.

All the best and I hope it works out well for you.

[BuzzyBea]

Hi Joyann1,

I'm now in my 5th week post op, having had that exact procedure (abdominal cut as fibroids too large for keyhole surgery).

Please please please ask your friends and neighbours to help you, even if it's to preposition water bottle/jugs by your bed, help with meal, bath and bedtimes for your kids, or even just to come in to help change your DVT socks etc. Anything and everything will be welcomed.

You will seriously be so tired and exhausted for the first week or two ...and that's without moving around much. Besides, you will not be allowed to carry anything heavy for the first 6wks - please try to follow this rule as your recovery will take longer otherwise (if you have no help and must move things, think about having a small rucksack, just to put little things into to take upstairs etc).

The reality is your stomach will be very swollen post op (I was like 6months pregnant & now only look 4 months gone). You will find normal movement very restrictive and you may suffer post op pains - I was lucky and didn't suffer from pain with my incision site ....except I did have excruciating & often crippling trapped wind (top tip - prune juice helped where laxatives didn't).

I'm not going to sugar coat the recovery, but I really hope that you are in a position to ask for help with surrounding neighbours. Stock pile your fridge with frozen meals for you and the kids (worry about giving them healthier stuff once you feel much better). Extra pillows in your bed to support your tummy. Easy to reach items of clothes, food, equipment or anything you and the family need in the weeks following - as much preplanning as possible to make the house easier for you to access!

Good luck. You will cope - as a mum to kids, we automatically have to! But please come back on this site for advice and help (I did and am very grateful for all the tips given to me). You won't be alone and we are here to help where we can.

[joyann1]

Thank you! My doctor said just don't carry anything heavy and for someone to be with me to watch me on the day of my surgery all afternoon.

[MaryWarnecke]

Have you considered natural options? My daughter was in a similar situation and she took crinum latifolium it is from Asia. It reduced the size of the fibroids. She got hers here crinumlatifoliumdirect.com Everyone is different and it might not work for all people but it did for her.

[white2019 in reply to MaryWarnecke]

Hi MaryWarnecke, had a look of the website. Did your daughter have ovarian fibroids or uterine fibroids? I was just found a massive fibroids sitting in womb and hope to try the natural options firstly.. Many thanks.