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Do you find that people (family) don't understand the pain of fibroids in your abdomen, that you have to lie down for a rest?

Lotus-Blossom profile image
27 Replies

For me they can't seem to understand that sitting is not resting your abdomen but lying for a rest is. I really need to speak to someone who relates to this or even have some understanding.

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Lotus-Blossom profile image
Lotus-Blossom
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27 Replies
Chorlton_ profile image
Chorlton_

I have two fibroids (7.5cm and 4cm) and they do not give me any pain. I would see your GP re the pain you are experiencing as it could be something else, e.g. an ovarian cyst or something worse. Never ignore pain in your abdomen as this is the first sign of ovarian cancer but I am sure what you are experiencing is not that.

All the best.

Lotus-Blossom profile image
Lotus-Blossom in reply to Chorlton_

Thank you for responding. It must be nice to not experience pain. For myself my abdomen is very sore and I have read many other people in the same position as me, as it makes me feel I'm not alone. I have told my doctor and the maternity and they are not surprised I'm still in pain as they are sticking out as I have clusters of them all over my ab.

But you have raised a good point though to not ignore pain. It just angers me about the fact that I have not been monitored as I was assured I would be by the maternity ward every 6 months. I dread to think how much they have grown. All I want is to do is have a good cry.

Thank you for your concern and thank you for your advice.

Dawnshere1234 profile image
Dawnshere1234 in reply to Lotus-Blossom

I feel your pain girl!! I hope you can get a good Dr. that will address your fibroid issues. Until someone experiences the pain & misery that can be associated with fibroids, one will never truly understand!! I wish you all the best and hope you finally get the care you deserve!! ❤️

Lotus-Blossom profile image
Lotus-Blossom in reply to Dawnshere1234

Thank you so much for your kind words and support. It is people like you who keep me going and help me to open up with the community. x

Dawnshere1234 profile image
Dawnshere1234 in reply to Chorlton_

That is not true for everyone!! I myself have two fibroids around the same sizes as yours on each side of my pelvis. You are very lucky to not have any pain or symptoms as I have swell ups quite frequently these days. Pelvic pain is very common for my fibroids, sometimes stabbing, sometimes achy and dull. I feel feverish, and unwell when it gets real bad. Just last year both of my fibroids degenerated at the same time and I believe they are growing back again with a vengeance!! Acute pelvic pain at its very worst for I'd say a good 4 days. Nothing I could do, besides stay in bed and suffer & wait till it ran it's course. No hospital visit as there's really nothing that a Dr. can do besides prescribe you pain meds. So please do not tell someone that fibroids do not cause pain as you're 100% incorrect!! I wish you all the best & continued, pain free fibroids!!

bantam12 profile image
bantam12 in reply to Dawnshere1234

Not 100% incorrect as fibroids don't always cause pain.

Lotus-Blossom profile image
Lotus-Blossom in reply to bantam12

That is a lie! Many people like myself it causes pain as we need further treatment. I have been referred like many others before me for Embolization. I know all about it all because I see a Gynae Specailist where I live. I have also read about it on the N.H.S website. It is all over Health Unlocked as well as you hear about people in pain waiting for there treatments like myself.

You have to watch on who you say that to. Read your your facts before you say that.

bantam12 profile image
bantam12 in reply to Lotus-Blossom

Hey back up a bit ! No need to be rude !

What I said is fibroids don't ALWAYS cause pain, I didn't say NEVER !

I've had fibroids for many many years and throughout my last pregnancy, I've seen and am still seeing Gynaes so I do have the experience of fibroids and do know the facts.

Lotus-Blossom profile image
Lotus-Blossom in reply to bantam12

I wasn't being rude! but your words had really stung and hurt me. As a woman yourself you should understand. For me and many others we are the unfortunate ones who need further treatments.Great for you that they don't hurt you. But we are not all like you.

bantam12 profile image
bantam12 in reply to Lotus-Blossom

You have completely misunderstood my post.

I've had chronic pain for many years (I'm twice your age !) and several pelvic operations, I'm now waiting for a total hysterectomy so please don't lecture me about pelvic pain.

The facts are not everyone suffers with fibroid pain and yes your replies are unnecessarily rude, so we'll just leave it at that and move on 😉 Please don't respond again,thanks.

Lotus-Blossom profile image
Lotus-Blossom in reply to bantam12

I didn't appreciate your angry response we live in a country where we have freedom of speech. In order to bring change about I will continue to give my views and will continue to give my opinions regardless of age. I will continue to respect everyone's opinions regardless of age and you should do the same.

We can all learn from one and other.

bantam12 profile image
bantam12 in reply to Lotus-Blossom

Errr you haven't respected my opinion ! I'm really not sure why you have decide to take offence at my reply which was to someone else and it was not an angry response.

I have fibroids, I have chronic pain so why are you being so argumentative, I never said they didn't cause pain !!!

Please just leave it alone now.

Lotus-Blossom profile image
Lotus-Blossom in reply to bantam12

I wish you well for the future. God Bless.

Lotus-Blossom profile image
Lotus-Blossom in reply to Dawnshere1234

Thank you for defending me. x

Dawnshere1234 profile image
Dawnshere1234 in reply to Lotus-Blossom

Anytime girl❣️

Konagirl60 profile image
Konagirl60

The size of the fibroid and position it’s in can cause pain as the weight of the fibroid puts pressure on pelvic organs. Fibroids can cause terrible cramping when you have your period to.

Have you had an ultrasound to show the size and location of the fibroid?

Has there been talk of removing it surgically? You may need that.

Fibroids can degenerate and when they do they release chemicals that cause acute stabbing pain and swelling in your abdomen.

Get back to see your doctor to discuss this.

Any body injury that is invisible is always misunderstood by the general public. It’s hard not to be given love and support when you’re in agony and people don’t believe you.

Family and friends don’t realize that doctors are gas lighting people and leaving them in pain. Doctors are also misdiagnosing people to.

What meds are you using? We’re you offered anything?

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

I am waiting for a consultation for my Embolization which I have been waiting for a long time. Ever since covid it has delayed my appointment big time which angers me. The maternity isn't even responding to my doctors. Know matter how much they are trying to chase them up.I have fibroids sticking out of me as well as clusters all over my abdomen I can also feel them pressing up into my stomach and into my pelvic muscles. Embolization is the only way out for me I have prepared my questions in advance for the consultation. But the maternity is not playing ball.

Sometimes I wish I could run away from my health I know I can't but I'm just so tired and sick of it all as I feel I could just weep.

Thanks for listening to me and your understanding as it makes me feel so lonely as I feel I need to speak to people who have been in the same position as me.

Thank you for your kindness and understanding.

Konagirl60 profile image
Konagirl60 in reply to Lotus-Blossom

I’m SO sorry you’re dealing with this. It sounds to me like you’ve been neglected. Have a cry if you need to. It’s a great release.

Could a nurse practitioner or consultant help you get care quicker? Could you pay privately to get faster care?

Hang in there.

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

Thank you for your reply. I will have a good cry in bed at night I'm going to have to.My doctors are contacting the hospital (Maternity Department) but they are just not responding.

I did look into private care and my mum did to but they are also in the same vote as the Maternity Department, I just want to scream and shout at them but I know that won't help matters. If I wasn't living with my parents I would dread to think what state of mind I would be in if I was on my own, if this is me now.

But I have contacted my therapist and arranged an appointment with them.

Thank you for your patience and kind words.

Konagirl60 profile image
Konagirl60 in reply to Lotus-Blossom

I’m sending you good luck vibes so you get the urgent testing and care you need. Keep in touch.

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

Thank you so much and your kind words. I will keep in touch.

Konagirl60 profile image
Konagirl60

Did you make any progress with your care?

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

Hi sorry, I didn't get right back I have had a lot on with my health. I have spoken with my therapist and she has been really understanding as she listened to me. I am still processing what I was just told at the hospital. I'm really upset by it as I have something else wrong with me on top of fibroids. I swear I just want to scream and shout at the world as I now have to face my deepest fears of being operated on again, I'm not ready to put it on health unlocked yet until I come to terms with it. But perhaps I should and get support online from people who have been through it. I don't know what to do.

But I had a good Christmas with my family especially with my mum and dad.

Did you have a good Christmas?

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

Hi Konagirl60, I'm ready to speak now. Between you and me you won't believe this but I now have a hernia in me. I'm really upset by this because it means I have to face my deepest fear of going back under the knife. Last time I went under I almost died so naturally I would have this fear. I'm going to have to speak to a therapist about this to help me push by this fear so I can face the hospital appointment.

On a lighter note I have Good news. I now have my Embolisation Consultation appointment which makes me very happy with that as I am a step closer to getting it done but a part of me is very nervous about it which I suppose is natural as I've waited for this for so long.

Enough speaking about me how are you getting along? x

Konagirl60 profile image
Konagirl60 in reply to Lotus-Blossom

Do they know how you acquired a hernia?

What will the embolizaripn

Lotus-Blossom profile image
Lotus-Blossom in reply to Konagirl60

Hi, I'm delighted to hear from you. Between you and me I feel I can vent to you as it sounds like you understand me. It is since I got my Myomectomy the specialist did say that. So naturally I'm very upset by this. I feel like it's the story of my life as there is always something with my health. I just want my life back, is that so much to ask for. I'm just holding on to the fact that I now have my Embolisation Consultation on the way soon then hopefully my actual Embolisation. Hopefully after that I can get some of my life back as I wait for them to deal with my hernia.

Enough about me. How are you getting on with your health ? Did you have a good christmas?

Alaine1 profile image
Alaine1Administrator

Hi Everyone,

I’ve been at work since 10pm last night until 7am today and have just gotten home so was unable to respond to this post. There are a few points I’d like to make in relation to this conversation.

My first point is that it is possible to disagree with someone without having to be rude to others on here. Both sides have to try and understand the other persons experience which might be radically different from your own. Neither person is right or wrong. The only time I will modify or delete a conversation is if the person is selling or advertising, making dangerous suggestions with medications or the information given is completely wrong which could cause harm. This was unfortunately a conversation where tempers flared up. I’m not going to blame anyone on here as there were a few of you involved, but I’m simply asking that you perhaps re read the conversation from start to finish and see what you could have done differently. I know we are all human and sometimes it does feel that another person is invalidating our illness but that’s not always the case. You are all valued members to the charity.

Unfortunately the NHS is still severely affected by COVID-19 and it’s restrictions in medical buildings etc. I myself am still waiting for a first appt with a consultant 8 months after being requested by another consultant following surgery, and have had all my other illnesses affected by cancelled consultants appts or still waiting for initial appts with specialists at hospitals so I completely understand how frustrated we all are. Believe me this conversation is going on on every charity page on HU so we aren’t alone. Unfortunately there is nothing we can do except wait to be seen and ask for support from our GPs who can help manage the pain or symptoms for us.

Secondly like many chronic illnesses including pelvic pain the sufferer may experience pain/symptoms but also be pain and symptom free. I know this myself where I haven’t been pain free from any of them but other women may have no symptoms of endometriosis or adenomyosis. It’s only discovered during a scan or when undergoing investigation for infertility. There still is a lot of debate in the scientific and medical communities how this occurs.

As always any questions or comments please feel free to contact me privately or post on here. Have a happy Saturday

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