Fibroids: Hi all I have fibroids... - Pelvic Pain Suppo...

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Fibroids

TheatreSquirrel profile image
12 Replies

Hi all

I have fibroids (multiple but about 4.5 cm). I have had to wait over a year to see a consultation and just got back, what a waste of time. I have many typical symptoms, I am exhausted with constant heavy feeling, stomach, groin, back and leg pain, problems with needing to use the loo suddenly etc. But I have been told due to size of fibroids, none of my problems are due to fibroids and that they don't grow that quickly (since my scan was a year ago) so it cant be that (even though I have read on multiple sites they can grow). He also dismissed me as peri menopausal as my periods are still fairly normal (I have been told by a GP that I am peri menopausal and that periods are not the only factor however they don't want to give me HRT due to high BMI so have been waiting 4 months to see a gynaecologist for help, maybe they can suggest something else).

Basically I need to lose weight as its weight and anxiety.

I am so upset. I have a really tough stressful job and I am not coping with it and feeling ill all the time. I am sick of my health being dismissed. I just don't know what to think now.

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TheatreSquirrel
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12 Replies
Wxm22 profile image
Wxm22

hi I have exactly the same problem. Lots of fibroids with two being 4 cm. I had an ultra sound over 5 years ago and another 6 months ago and they have grown! I saw a gynae consultant January and had some biopsies as bleeding between my heavy irregular periods (i am 53). I am waiting for a hysterscopy and at that stage would like me to have a coil fitting( not keen). Said it would help with period and if I had HRt. I have read estrogen feeds fibroids! I also have the loo issue and tiredness. I have read fibroids can cause this. I work but am trying to go for a walk everyday and have been taking vitamins. Although doesnt help with needing the loo! But it makes me feel better in myself. Also read caffine not good so cutback on that which is hard when you are tired. There are procedures to remove fibroids but i think once you are over 50 they will not grow more. Gynae said the fibroids are causing my heavy periods. Be kind to yourself i know its hard when you work and life is so hectic you often feel you are a spinning top.

Wrip profile image
Wrip in reply toWxm22

I am 53 and have been struggling with heavy periods and tiredness for a number of years. Due to my heavy periods this was causing me to be anaemic. I have had the scans and have been diagnosed with fibroids, however mine are 11.5 cms and equivalent to being 22 weeks pregnant! I have recently had a hysterscopy and biopsy and currently awaiting the results. However, I did decide to have the coil fitted, I was reluctant too, however, I just want the periods to stop! As the coil takes 3 to 6 months to become effective, the gynaecologist has put me on progesterone tablets to stop my periods for 3 months until the coils starts working. I am feeling better already with this and I also take prescribed iron tablets. Not sure what they are going to do about my fibroids yet I am waiting for my next appointment. Just a warning, I had a scan 3 years ago and my fibroids were 5.5 cms, they have doubled in size in 3 years! I was told by the gynaecologist 3 years ago that they would likely shrink as I am at menopause age, they didn’t! So at that time I opted to not have any treatment and would wait to see what happens, big mistake as my periods got worse. My advice is don’t leave it like I did expecting fibroids to shrink and periods to get better, keep pestering your doctor and tell them how this is causing you major issues with your home and work life and possibly get a second opinion. Good luck for the future and hope all is well in the end.

TheatreSquirrel profile image
TheatreSquirrel in reply toWrip

Thank you for your reply and sharing your experience. I am going to go back to my GP as the pain is getting worse. If it's not Fibroids then they need to tell me what it is! Best wishes with everything

TheatreSquirrel profile image
TheatreSquirrel in reply toWxm22

Thank you for replying and guidance. I do need to work on health as I know it will help. I hope you are ok and all goes well for you

Sage4 profile image
Sage4

So sorry you are going through this and just know you are not alone. I waited 2 years to get internal scans and finally be seen by gynecologist only to be told my options are coil (not keen based on what I've read) or hysterectomy (which I feel too young to consider). I was also battling infertility and trying to preserve some hope which just meant doctors blamed me for not trying some of their treatment options. The 'experts' go between saying the bleeding might not be the fibroid at all to saying they can't remove my fibroid because it is at the cervix and will bleed too much. My fibroid did double in size over a year so ended up getting an MRI just to ensure it wasn't cancer. I think what's most frustrating is that no-one seems bothered to find a solution and people who are suffering with this day to day are left to try to find their own solutions. I think others just see it as bleeding, but the unpredictableness of the bleeding/flooding makes working/socialising/exercising and just living life really difficult. Found myself an exhausted, overweight, anxious mess! Just kept getting angry thinking if this was a male problem, they would be all over finding a solution.

Try looking up the British fibroid Trust. I found bringing some of this information back to the doctors to discuss trialling different options a success. I still haven't solved the problem but it's allowed me to feel like I have some control. My advice is don't leave it to just get better, push to try something, if that doesn't work try something else.

Does anyone else feel what makes this particularly stressful is the taboo subject that means you can't really talk about it and you're expected to just put up with it? Thank goodness for forums like this.

TheatreSquirrel profile image
TheatreSquirrel in reply toSage4

Thank you so much. I really appreciate hearing your thoughts and experience so sorry you have had such an awful journey. I will check out the British Fibroid Trust. Getting info together sounds like a good action. Stop me feeling so lost with it.

Wxm22 profile image
Wxm22 in reply toSage4

thanks for that info going to look for the Fibroid Tryst

Uzao23 profile image
Uzao23

You are not alone dear. my fibroids are the size of 16weeks pregnancy apparently. One is 9cm by 7cm. I’ve got multiple. NHS has been able to do anything on me since last year 2022. This year due to heavy bleeding I’ve need to AnE twice as a result of fainting due to loss of blood. I’ve been but on hormones to stop and control my bleeding now. When I start bleeding it doesn’t stop. It just doesn’t stop without synthetic hormones at this point. No clue when they will be removed and there are people ahead of me waiting for their surgeries. I’ve had blood clots looking like liver and coming out long up to 12 -15cms , yes. And sometimes I’ve had to push them out . It’s horrible, it’s unacceptable but it is what it is. Just sitting here and praying that I will be fixed and the senior doctors don’t strike. It’s not easy being a woman sometimes. But let’s always live in hope.

TheatreSquirrel profile image
TheatreSquirrel

So sorry you are having such an awful time. I hope you get the treatment you need soon 🙏

Ree_Laine profile image
Ree_Laine

Hey,

I’m sorry you’re going through this. I am currently in recovery after having 2 fibroids removed weighing just under 2kg. The biggest was 18x10 and the smallest was 6cm. My uterus grew to the size of 28 weeks size. In 2020 the same fibroid was around 12x10 cm so THEY DO GROW. My only option was to have a myomectomy this allows them to preserve the uterus for pregnancy as fortunately these fibroids were pedunculated (on a stalk) and outside of my uterus. I’m 36 and this was hindering pregnancy for me as I wouldn’t be able to withhold one comfortably or safely for a baby to grow. As I’m currently having IVF treatment my surgery was referred and done in a couple of months and seen to be an emergency as all fertility doctors missed this important diagnosis. I’m hoping I can resume my fertility treatment in the next couple of months and I will be trying my best to change my diet so they don’t come back as they can return. Wishing you the best of luck and to encourage you to keep on at your GP, you know your body better than them and ask to be referred to a specialist xx

TheatreSquirrel profile image
TheatreSquirrel in reply toRee_Laine

Thank you for your support and I wish you a speedy recovery and hope for positive news for your fertility treatment xx

Agascot profile image
Agascot

hello lovely ladies I feel the same depressed non stop black thoughts Im worry that I very sick and have period very heavy for 3 week 1 week break and started again now. I havent told anybody that im worry soo much. Additionally my husband was horrible to me. I have been in doctor for back pain but now they are suspecting fibroids. I had z pain in my right side Of back From few years but now is more painfull plus a lot Of periods. Im 45

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