Fibroids : Hi everyone I was hoping for since... - Women's Health

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Fibroids

Fcake
Fcake

Hi everyone I was hoping for since advice. I was diagnosed with having a fibroid the size of a babies head and the only option is a hysterectomy. I have very painful periods and heavy bleeding. Anyone else been through this.

39 Replies

Hello,

Crikey that’s a large fibroid is it painful?

Ive been suffering with heavy and prolonged periods. Have the coil and was also taking the contraceptive pill at same time all to reduce bleeding. They haven’t! I’ve got fibroids also, options I was provided with were ablation initially and if that didn’t help possibly thinking about a hysterectomy.

I will be seeing my doctor again as I’ve also had a MRI scan to discuss options going forward as I’m not keen on hysterectomy just yet it’s a long recovery.

Fcake
Fcake in reply to BeeHoneyB

Hi

Yes it's very painful every month 😩😩 and I'm going to see the consultant next week again to discuss options further. I'm also worried about the operation but also afraid of it continuing to grow. Really torn. I'm also getting an injection tomorrow to stop periods and have to start HRT. I'm 42 and feeling anxious regarding this also. I hope your MRI scan goes well as it's difficult

Cammiebabe
Cammiebabe in reply to BeeHoneyB

Feel for you. I hope you Are okay

Hi Fcake,

How awful for you, that sounds horrendous😔sometimes you can have sizeable ones and not cause that much problems.

Write down a list of things you are worried about when you see the consultant so you don’t kick yourself after the consultation as you have forgotten to ask something! Did they mention keeping your ovaries if you went with hysterectomy?

I hope you get the answers in your consultation keep us posted. Good Luck x

Hi !Sorry to hear you’re going through this. I Haagen suffered with fibroids for 5 years. First it was heavy bleeding and eventually had scans and test to show fibroids. Tried the coil. My fibroid pushed it out of me after 6 weeks. Then went on cerazette. Worked like a dream. No periods most of time if so it was very light. Spotting every now and then. No pain. However the fibroid grew and grew. I looked 6 months pregnant. Had pressure symptoms but wasn’t bad. It was mainly how how it looked. Opted for embolization. Worked !! Fibroid shrank. No problems after than until about 7 months later I had a spontaneous bleed. Passed out. A&E three times. The biggest clots. Scans shows more fibroids. Drs put me in Neristerone 5mg and it slowed the bleeding down where I would have a bleed in the 7 day break. Bleeding was medium to heavy. But can’t stay on this for long. Horrendous side effects. Gyno offered me hysterectomy but I just couldn’t go down that road. Wanted to see if I can manage my symptoms back on cerazette again. Gyno agreed. Been on 6 and half months now.

Irregular periods and spotting most days. However this period has been extremely painful. And long. 12 days so far and pain still going. Period was brown then red and now it’s like watery pink / red.

Constant dull ache now and stabbing pains on my lower right pelvis

Bloody exhausted. Waiting for gyno to give me an appointment. Not sure what the next step is.

But I’m not happy for the hysterectomy to be honest.

Keep me updated x

Fcake
Fcake in reply to Cammiebabe

Hi there

So sorry to hear what u have been suffering. I'm 42 and have 3 wonderful children so I'm thinking based on all the information a hysterectomy may be the best option.

I've been given zoladex 2 days ago and I'm experiencing bad side effects. Feel rotten today to be honest. Pelvic pain... Horrendous headache 😟 have consultant app on Monday so going for some clarity

Cammiebabe
Cammiebabe in reply to Fcake

Seriously.. so sorry to hear. It is so awful what some of us are going through but in the outside we look okay.

I’m 42 and have two teens. I definitely do not want more kids but I can’t wrap my head around them taking out my womb etc. Yes I did contemplate it when I had the horrendous bleeding but after some research I changed my mind. Just make sure you’re not making that decision because they say it’s the only option.

My consultant who did my embolisation was a female and she did say to me that a lot of drs will push that because it just solved the problem however they don’t think about the emotional side for women.

They said to try zoladex of my cerazette wasn’t working but this doesn’t sound good to me either.

Try hot bath with magnesium salts. Hot water bottle (I have that right now !)

Plenty of water and rest. Light exercise helps too.

Try to stay positive. I know it’s hard. I’ve been there. It’s like I’m back and forth all the time.

Sending you hugs

Fcake
Fcake in reply to Cammiebabe

Thank u so much. Its a real struggle and so many going through it. Thanks for the hugs and right back to you

Fcake
Fcake in reply to Cammiebabe

Hi there so ni had the appointment today and the best outrun to stop it all is a hysterectomy. Abdominal 😢 as fibroid is too big. I have to make decisions on whether or not to have ovaries removed too😔. I'm really not sure. Any advice welcome x

Cammiebabe
Cammiebabe in reply to Fcake

Oh no. I’m so sorry to hear.

Many women say having the hysterectomy gave their life back so it might be for you.

Personally I’d leave my ovaries so I don’t kickstart into menopause.

But this is a choice you have to make. Do the research and weigh it up.

I can’t believe there is no other treatment for you.

My fibroid was huge !!! I looked 6 months pregnant. Had the UAE and I can’t even feel it let alone see it. However I have lots of other fibroids too.

Can you believe. I am still in pain and still on my period 15 days in !!

Wiped.

Please let me know what you decide to do.

Try not to stress.

Fcake
Fcake in reply to Cammiebabe

That's not good you are still in pain. I feel I really have had poor quality of life for sometime and just want to feel me again 😩 also my iron very low at the min so getting tabs to sort that out.

Im just afraid they will try for months to shrink it then it will just grow again as soon as my period returns and I couldn't cope with all that back and forward.

Re ovaries... I'm thinking about it and def need to research more about it xx thank u hope u feel better soon

Cammiebabe
Cammiebabe in reply to Fcake

I know what you mean. I’m thinking about it too and just be done with it. I’m really scared though. I just go back and forth in my mind. It’s driving me crazy. Although this 15 days is the worse I’ve ever experienced. I never had pain like this before or my bleeding never went on this long.

The only big thing was the spontaneous bleed and ever since then pills have make it problematic.

Please keep in touch with how you get on.

It’s not fair we go through this and definitely need our lives back

SraB
SraB in reply to Cammiebabe

Very similar situation up to the point of wanting embolisation.. my body also pushed out the coil, using progesteron now. My gyn says only option now is hysterectomy but I want to try embolisation so I will ask for a transfer next week..

I completely get your fear. I'm terrified. I've never had an operation or been put to sleep and that kinda freaks me out but they do it everyday is my logic at the min.

I will let you know. Are u in the UK x

Cammiebabe
Cammiebabe in reply to Fcake

Love the logic. Wish I could install that in me too. Do you know when your op is ?

Yes. I’m in north London. You ?

Fcake
Fcake in reply to Cammiebabe

Lol trust me I'm not normally logic but with big things I can be 😅 I'm in Belfast xx they have said they could do it June time but I have to go private as NHS is 3years waiting!!! And that's just for initial assessment

That is bloody outrageous!!! I cannot believe that. How are we meant to cope that long with pain and bleeding like that. I’m glad you can go private !!

Not that far. Good luck babe x

Fcake
Fcake in reply to Cammiebabe

I pay a policy through work and just hoping they will cover it. Should know in a week or so xx thank u

Hi, Sorry to hear you’re going through this. I Haggen suffered with fibroids for 5 years. They said I have fibroids on the cavity of my uterus following an ultrasound scan. I have been bleeding heavily, non stop with clots since mid February. The fibroids bleeding are impacting the quality of my life. GP has prescribed various birth control pills such as combined pill and norethisterone to try and ease my bleeding whilst I wait for my gynecologic appointment. The combined pills haven't really worked for me. The only thing that has worked for me is the period delay medication norethisterone which has helped minimize the bleeding but obviously it's not for long term use so I had to stop using it after some weeks. I am currently on combined pills which isn't really helping and is causing me headaches and feeling nauseous. I have a genecology appointment later this month. I was wondering if anyone has experienced the same or similar, and how you managed with it whilst waiting for your gynae appointment. Also what treatment options are there. I already have kids and not intending on having more. Any advice would be appreciated. 💞😇

Cammiebabe
Cammiebabe in reply to lawrins

Hi lawrins

So sorry to hear you’re going through this. You’re not alone. Yes definitely experiencing near the same kind of thing. I’ve been bleeding now since 28th feb. It’s not heavy but I have pain. I managed this with painkillers.

I stayed on norethisterone for 6 months. It reduced my bleeding and I would bleed only in the 7 day break however had many side effects on this pill.

I’m currently on Cerazette and it has made my period erratic but not those heavy.

I drink lemon, ginger and turmeric tea everyday to reduce inflammation.

Hot water bottle and heat pads and hot baths helps.

Big knickers and I cut up tights into shorts to keep the pad in place (you know that feeling when you’re lying down or sitting down for too long ) tights help keeps it secure

Keep up your iron levels by eating lots of iron foods or you may have to take iron tablets.

Rest. Light exercise

These things I’m sure you’re already doing until you get seen. There not much else you can do. Go hospital if it is really bad. Oh have you tried tranesemix acid to help with bleeding ? That helps reduce it.

I have scan and bloods and gyno next week so I just Need to hold out a little longer !!

I hope you are okay xx

SraB
SraB in reply to lawrins

Gyn suggested to change from combined pill to only progesteron pills. It helped, I have less side effects, It was really bad with the combined pill for me so at least it is an Improvement while deciding on hysterectomy/ embolisation/ miracle.

SraB
SraB in reply to SraB

Oh yes, I also used tranesemix acid for 10 days after an hemorrhage (after loosing the coil) I guess it helped a bit.. but gave me scary pain/ cramps in my legs.

Cammiebabe
Cammiebabe in reply to SraB

Hi ScaB

So sorry to hear you’re going through this. It’s shit isn’t it.

Definitely ask for a UAE. It really helped me. And I feel like you have to try different options before getting a final hysterectomy.

I’m still bleeding although it isn’t bright red. It’s like pale brown pink colour and watery. So annoying. Still have pains.

I have a scan tomorrow to see what’s going on. I think I may have new fibroids which then will ask for another UAE which is common to repeat the procedure but let’s see as these symptoms I am having are very new to me.

I hope you get the UAE - you will need an MRI to. See if you’re eligible for it first - Good Luck. Keep me posted xxx

It's so unfair we are going through this ladies. My consultant seems to feel my only option and best is a full hysterectomy. I'm hoping I can get my life back. Can I ask what UAE is please xx

Cammiebabe
Cammiebabe in reply to Fcake

So unfair !!

uterine artery embolisation.

Basically they block the blood vessels that feed the fibroid and then the fibroid shrinks / dies. Relieving symptoms.

You can have it done on lots of fibroids or have the procedure done again.

It worked for me. I looked like I was 5 months pregnant. Now I can’t feel it at all. Or see it.

My bleeding was always controlled by the mini pill

Everything was great until my spontaneous hemoragge

Anyway. Have a look into it and ask your gyno for a referral for the op.

SraB
SraB in reply to Cammiebabe

Cammie please let us know what the scan shows! My gyn said to me that embolisation wouldn't work for me because I have so many fibroids, but in the info I've read i saw that that is not a problem (even that unseen fibroids can dissappear if in the proper bloodstream) so I didn't trust it and I noticed they don't have the procedure in this hospital (so they might be biased). I wrote an email to a different hospital (1 hour drive but had first UAE in this country 20 years ago) they answered that they don't look at amount of fibroids!!, they look indeed in an MRI if you are elegible!! So gyn lied, or didn't know, both options give me a bad feeling.

SraB
SraB in reply to SraB

By the way I also wrote an email to yet another hospital where they are "trying out" something called SONATA. It comes from the USA but it is not yet standard procedure here. I am in The Netherlands. I would volunteer if they take me...

Cammiebabe
Cammiebabe in reply to SraB

Yes. I have a scan this morning so will let you know if I get any results today.

And yes your gyni either didn’t know or just lied and kept pushing for a hysterectomy as it’s the easier solution but a big deal !! Ask for a second opinion for sure !!

Regarding sonata treatment - is that in Addinbrookes hospital in Cambridge ? What did you say in email ? Are they asking for volunteers to trail the procedure ? I’d be interested in that too.

Sorry I just reread your post. You wrote to hospital in Netherlands. Sorry.

They have one hospital here (I think ) in uk with this treatment so i might look into it

SraB
SraB in reply to Cammiebabe

Yes , only one hospital is doing trials here! In the USA it is an established procedure.. I hope to get an answer soon. Yesterday I changed from regular progesterone pill (medroxyprogesteron) to the minipill. I immediately feel changes on the side effects! (Less exhausted, new night sweating and anxiety). I just hope I don't get extreme bleeding with the change of pills, the gyn said he cannot predict.

Dear Fcake, has this helped you for a decision? I personally think that there is a big chance I will have a hysterectomy. I just want to feel I tried everything I could, specially because I worry about my colon. I have a condition in which my colon is weak I bled 10 day in January.. so a very specific situation..

Yep and similar sized fibroid too. I had a hysterectomy last year as the couldn’t remove the fibroid without removing my uterus. Kept my ovaries though. No more heavy periods and severe anaemia. I’d recommend it but as it major surgery I’d get advice first. Hope it’s sorted soon

Hi everyone it's been confirmed that a hysterectomy will happen. I'm just waiting for a date 🙄

SraB
SraB in reply to Fcake

Good for you! You will be really done with the problem. The waiting is annoying.. i hope the date is clear soon. Did you decide (if you have a choice..) on ovaries/ cervix?

Fcake
Fcake in reply to SraB

Hi I did have a choice... I've decided on getting it all out as I have my family and bit worried that it could cause problems in the future. I'm very nervous about it but really going out makes me feel better eventually xx

Cammiebabe
Cammiebabe in reply to Fcake

Ah good for you. This will all soon be over and you can start living your life !!

I had my scan and bloods and results will be in for my guy I appointment next week. I have been thinking more and more going down the route of a partial hysterectomy all depending what they find. Scary ! But I’m more open to the idea now.

Good luck with everything. Big hugs x

SraB
SraB in reply to Cammiebabe

Yes I also need to accept the idea, hysterectomy is the final solution after all. My mom started menopause at 55.. I'm 41.. thats a long road. For now i have a bit of hope, they called and they will review my case for Sonata, that doesn't mean im accepted BUT i get transfered to that hospital, which now i see is a better one, so even for hysterectomy this is good news.

Cammiebabe
Cammiebabe in reply to SraB

This is good hope Srab. I really hope you are eligible for sonata treatment. I’m keeping my fingers crossed for you. Well done for pushing !!!

Keep us updated xx

SraB
SraB in reply to Cammiebabe

Hi! Did you get the results? Some times after "results " they still don't know, I hope you have more clarity. I'm still waiting for the phone call to get an appointment . And i actually decided to go vegan for a while. . Just to see if it helps. I guess that proves I would try anything 😳

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