I never post anything, but often reply to other members.
Iāve had a lot of ill health in other areas and I had 15 biopsies a few wks ago, which left me in a lot of pain & feeling nauseous ever since.
The nurses were fantasticšš»and explained how it was now like 15 open wounds inside having to heal.
The biopsy results came back last Friday & I have cancer and need an operation.
Iāve had M.E & then fibromyalgia years now, but the last time I had a major operation was many moons ago, when I ājustāš had M.E.
Reason for my post is to ask if anyone suffering with fibromyalgia, has had a hysterectomy, and how it impacted their fibro symptoms afterwards.
I have so much intense body pain daily, but try to self manage best I can and push through for my sons, but Iām dreading the fibro increasing, because of the impact of a hysterectomyš¤
Will be grateful to hear from anyone who has maybe been in a similar positionš
Feeling I need several Double Malibuās at the moment after my diagnosisšøš¹š«£
Written by
DoubleMalibu
To view profiles and participate in discussions please or .
I am so sorry to read you have been diagnosed with cancer. As for your question. The nearest to an op is when I had my 2 kids. Both C sections then sterilisation while they had me open. Back in the day C sections were quite a big op not like to day where your awake and home within 24hrs for some. You were put to sleep then stitched up and had a 10 days stay in hospital.
Having had fibro for over 40 yrs I am sure I had it back then. I wondered at the time why all other mums who had sections were sat up in bed the next day feeding their babies and I never saw mine for the first 4 day's. I could not move for the pain. Now I understand why my recovery was so slow.
But like we always say fibro is different for everyone. I guess that goes for operations and recovery times. My honest opinion I do believe it's down to our state of mind. I was young and scared so I felt the pain more. I still think that's the case with most pain issues.
My second child was still painful + the sterilisation. But I had her in the room and feeding the next day. I had a different mind set to pain by then. Plus an 18 month old baby at home needing me. So I had other things to focus my mind on other than pain.
But I am sure you will recovery quite quickly. You seem to be a person with a strong and resourceful attitude and that will see you through this .PIus you have your family to focus on and you want get home to them. I would offer one word of caution do take thing slowly and get plenty of rest. I will keep you in my thoughts and wish you all the best xx
You have endured a lot of years of pain & I can tell you understand my concern.
You always have a positive way with your words & are a credit to healthunlockedš
Yes I can imagine back when you had your children things were tougher for you, much longer recovery times.
To of had two children under 18mths must of been difficult, but with your ill health too, good you had them to focus on but nonetheless such a challenging time for you, thanks for sharing your story.
When my mum had her hysterectomy it was a 3wk spell in hospital, by the time an auntie had one things were far more advanced, recovery was quicker.
But neither had the layers of M.E & fibro or cancer.
I remember after my eldest was born, I cried the first trip out he had in his pram, as I was too out of it on the sofa with the M.E, so couldnāt go with him, his dad had to go on his own with our son.
My last Operation was an ectopic a long time ago, they did a blood test day after the operation & my hormone level was rising, they couldnāt understand how when theyād operated, they scanned me and found a second pregnancyš so looks like my youngest should of been a twin! I considered myself incredibly lucky to of had my youngest.
The hospital asked I go in this week, but Iām in Liverpool on a pre planned visit to my Mum & family, sheās now in a care home & i didnāt want to disappoint her, she is my priority this week, itās been so hard not being able to share this with her, but at her age she would worry way too much, so didnāt want to disturb her mind with it.
Mum was the one since I was a teenager with M.E, who always completely got my health & knew how I felt.
To describe me as having a strong & resourceful attitude is kind Momoā¦.thank-you!
My favourite motto is Que sera sera.
We have to deal with this kind of stuff head on I guess & just accept it needs dealing with.
Iām completely whacked with the journey to Liverpool 3hrs!
Awww bless, you have had way much to deal with than most that's for sure. And have a lot more yet to tackle. And you can still put others first. I think they must have broke the mould when they made you LOL .
Back in the day I remember you were not allowed to barely breath for the first 6 weeks. And definitely could lift nothing heavier than a tea bag. I know I sound ancient. A young 67 well till the 29th then another year on the old clock .
Sorry about your mum have you no one you can spread the lode with ? Sometimes you need to step back and focus on yourself and I would definitely say this is one of those times for sure xx
Iāll make sure i donāt lift a teabag too & lock the hoover awayš
Mum thankfully has other family members close by & my sibling. But due to my health i hadnāt been able to do the 3hr drive over for a while, it was important I saw her.
But Iām in daily contact with her needs.
Can you believe her care is Ā£5600 a monthš³
Weāve had to organise a charge on her home to fund it now, my parents worked hard all their life for their home. Both parents were in hospital for 4mths, we lost dad and mum got out in time for his funeral, she has been through a lot.
Ever since sheās sadly not been mobile & needed the care home.
Youāre still a youngster Momo, very young at heart Iām sure. Although our bodies donāt feel that way with fibroš«
We all react differently but yes I had a hysterectomy back in 1989, two years into my fibro journey. My consultant was great and said my mental attitude was the most important thing for recovery. The recovery was fine, no real impact on my fibro, however you must remember to be a good girl and not overdo things. Accept all the help you can get, fill the freezer with healthy meals, invest in a cleaner for a few weeks if you can afford it and have nobody else to help out. Forward planning is the key to making your life a little easier.
Get yourself some good books if you enjoy a read, or a really big jigsaw to do so you are not tempted to overdo things.
I wish you all the best, keep us posted on your recovery.
Thanks for your wonderful words of advice, they are all spot on & I will do my best to remember them after my op.
You made me laugh with the ābe a good girlā remarkš
I donāt like being too goodš¤£but on this occasion I think you are correct and Iāll need to bešš»
It must of been harder in 1989 for you, I know things are far more advanced now, but with fibromyalgia itās so unpredictable, I was so ill for a few weeks after all those biopsies from holding my body so tense during the procedure, i couldnāt be sedated as I had to drive 30mins home afterwards.
So at least with the Op I will be anaesthetised, probably be the most sleep Iāve had in yearsš
You are absolutely correct re mental attitude being keyšš»
Sending my best wishes as very sorry too read your post, I hope you get some helpful advice , I hope you have family helping you after the op and they take very good care of youxx
I'm sorry to hear your diagnosis and wish you well, hopefully your Fibro won't be too bad after the op. You've had very good advice from both Dizzy and Dinkie, so you must be a 'good girl and not overdo things'! š
I had my hysterectomy in 1988 or 89 (can't remember!) but I didn't have Fibromyalgia then. My op was key hole surgery on the Monday, then rest in a special post op ward, and stitches out and home on the Friday, so nowhere near as invasive as it was before. I guess they must have made more progress since then. One thing I do remember though is I was very tearful for a few weeks after the op, that was put down to the anaesthetic. And I wasn't to lift anything heavy etc etc.
I am sending my best wishes to you and hope that the op goes well and that you have a quick recovery. š¤
Oh my goodness DoubleMalibu! I've literally just seen your post. You have been through so much and as Dizzy commented, you have much to face going forward. I'm so, so sorry to hear about your cancer diagnosis and that you are facing major surgery.
You are such a beautiful person and so brave and strong. You will get through this. I'm holding you in my heart and in my prayers. With love, Elaine xx ššš
Hi, I'm sorry to hear what you're going through I to have fibromyalgia plus other health issues. I was diagnosed with Cervical cancer back in 2020 during covid, I was told by my oncologist that I had to have a radical hysterectomy which meant everything had to be taken away because it started attacking the lymph nodes. I was in hospital for 4 days and told to nothing for 6 weeks after that I can't say that it made my fibro any worse than it was before the operation. About 3 months later I had to start my radiotherapy treatment I had 25 sessions of this and then 5 of brachytherapy which I found more uncomfortable because it was done internally down below , unfortunately it was this treatment that left me with extreme pain in my lower back but it didn't make my fibro pain any worse. Sorry for the long reply I hope that this will be helpful to you, sending you my best wishes! X
Thank-you so much for explaining what you have been through, and Iām really sorry you had to go through such an ordealš
Please donāt apologise, your message isnāt long & Iām grateful you shared what you have.
How are you now? Are you having regular check ups or anything.
Itās reassuring to know your fibromyalgia wasnāt any worse, as Iām really concerned about how it would be impacted.
Oddly I had precancerous cervical cancer in 2016, found by chance too! So if any ladies out there are reading this, please be up to date with your smear tests, I feel they are vital.
Iām quite angry with my Drs surgery, as i feel they have been inept, because they never actioned a letter my lead Gyni wrote to my surgery asking they carry out āinvestigationsā on me in Oct 2022, as I was āfloodedā to be polite! 2wks out of 4 every month, for years!
i didnāt receive a copy of the letter, and from Oct 2022 to Jan 2023 I had both parents in hospital 3hrs away from me, dad never made it home. So my small amount of energy rightly went towards my parents and not me, otherwise I would have been on the ball over asking where my copy of the letter was, & chased the Drs up to initiate the investigations. I only know about the letter as I recently asked a nurse to print off all communication!
I was getting told I was peri! But now because of the cancer, they are presuming Iām āpostā & the haemorrhaging was due to the cancerš¤¬I was literally begging my Drs to help meš¤¬
Thanks again Jobananas, I really appreciate you sharing what you endured and hope you are recovering wellš
Sorry to hear you have something esle to deal which will cause stress and anxiety š I can only share how I too had to have a major operation when my fibromyalgia was at its worst. I had no choice but to have this operation so I decided i needed to have a plan on how i would handle both .
My operation went well and was 5 hour long . my fibromyalgia was still there with symptoms that I had to deal with. My plan was .warm bathsMassage warm oil into your muscles. Do chair exercises to stop your muscles going into a spasms . Move while relaxing. Listening to music or listening books took my mind away from my pain.
Made a list of Job with simple steps I was going to achieve. Walked up and down the garden to build my muscles and mobility.
Because at the time I couldn't stand very long I would do my job by standing and sitting down when I had to . I brought myself a little stool with wheels and it worked great.
My tiredness was dealt with changes to my diet and lifestyle. I took vitamins C and brought fruit that gave me energy and looked at keeping my vitamins and vegetables intake to higher levels than before my operation.
I used a ten machine to support pain and the warm oils into my muscles worked for me. Stretching exercises are also very good for fibromyalgia. I research on ideas to help myself.
There are many things you can do to deal with the aftercare for your fibromyalgia and heal your insides.
I watch silly movies and comedy stugf š¤£ to make me smile and at to be focused on whatever I wanted to do.
Of couse I had my bad bays but with my new mindset they didn't last long. Look at your local community for talking therapist NHS website .you will be able to put yourself forward to be part of the service they offer . they are very good and you can share your concerns with them they will help you. š you will come through this journey just like you have with your fibromyalgia. I hope some of my suggestions can help you and you will overcome any problems you may have or see ahead. Good luck my lovely and be strong šŖ keep you sense of humour. Be positive your going to be fine . God bless and big hugs š« š¤ ā¤ļø. Xx
I really appreciate your detailed reply, it has helped me reading how you found ways to cope, well done on forming such a strong mindset and helping yourself so much in recovering, Iām sure that wasnāt easy to do.
Iām sorry to read you had to have a major operation and 5hours longš³
Crikey, that certainly sounds like major, hope you are over it now and on the better side of the recoveryš
I know itās something I just have to deal with head on and go through and lots of people will be in the same boat, so I canāt allow it to stress me out, but it gets exhausting doesnāt it layered between everything elseš¤ pain can get so intense with fibromyalgia, letās hope the devil of an illness has a few days off after my Opšš»
You are so right re sense of humour, amazingly I still have mine, even through my illnesses, and my sons keep me laughing so much. We prefer to laugh before anything else if possibleš
Your the brave one to take on such a conversation about Cancer . You will come through this with love and understanding and support and of course your family. You sound to me you have a great positive attitude and outlook. There was a task I gave myself every day. That was to look in the mirror and smile at myself it helped me with my moods and brought me back from the pain.
Take all the support you can get from mammalian nurses and benefits they will offer .
Keep in touch I would love to know that you come through this journey. Reach out to the GP to give you access to the pain clinic after your treatments/operation this will help you handle your fibromyalgia as they do video calls and there will be lots of others who have the same problems and can offer you tips on dealing with all kinds of issues around your pain and fibromyalgia and mindset.
there will be a local community linked to you location. Unfortunately GP don't offer this you have to ask. Your the shing star š my lovely and going to be just fine.
Kicking back can be such a nice feeling š so keep kicking girl . Big hugs . Keep smiling š xxxx
What a joy it is to communicate with you and the other strong ladies that have replied to me on here, considering itās such a dire topic, for you all to try and lift my spirits is amazingšš»
I was telling the wonderful wobblygirl, how my mum was a great worrier and always tried to get me to worry over things big and small, I refused to do it, only when you are given reason to, then do I worry. We donāt have energy to waste do we.
As for my Gp i donāt feel I want to turn to my surgery, (i canāt remember if Iāve put on here as the string is so longš)how my Gp has let me down, my lead Gyni asked my Dr in Oct 2022 to carry out investigations as I had severe symptoms, but my Dr didnāt action them!
I only got a copy of the letter when I asked for copies of all communication, after the recent biopsies.
I never received a copy of the letter in 2022, i would have chased it up if i had. And it was when both parents were in hosp for 4mths.
I feel itās negligence, they were saying I was peri! But now think Iām post! And the severe symptoms were due to the cancerš
Your right re support, as regards to fibro support I was thrilled to find a local group, but the one time in the month they met in May, was day of biopsies and the June meet up is day I see consultant š¤£ but Iām communicating with the lady who runs it & will eventually get to meet them all, that can be part of my mental recovery plan ehš
Definitely forward plan and try to get more in place than usual...It's a slow pace to recover+just coping with the cancer diagnosis... I achieved very little w the exercises+I regret that now!!!
A little and often should be our mantra after surgery? It is hard...
Yes definitely need to plan, Iāve grown to be someone who has had to plan for everything, I do tackle things head on but without drama, Iām happy to say my boys have grown up the same, they both take things in their stride bless emš but with fibromyalgia being so unpredictable I was concerned how the operation would impact it, guess only time will tellš¤
You are so correct re the diagnosis, I still find it difficult to accept Iām mentioning myself & cancer in the same sentence.
Did you have to have surgery then? Hope you are ok now?
It was a very lonely time for me and I got really depressed...
That was worse than the cancer diagnosis!
I'm still here all lob-sided!!!
However, a few months back I had a bladder issue which they thought after all the testing was cancer! It brought back all that waiting...
And long forlorn days... and the depression!
After weeks in the system waiting, waiting, waiting I had the procedure to prove it wasn't CANCER and I was totally elated but then the side effects from the procedure kicked in and so it goes on...
I think with any diagnosis, you can expect the unexpected!
It's tricky to navigate alone...
Just put yrself first mentally and physically...
Learning to be selfish and look after yourself totally isn't an easy lesson but it does pay dividends further down the journey...
I'm sorry my support for you isn't so glossy and brave!
Just being realistic with fibro complications too... It's tough but doable!
I appreciate your honesty Wobblygirl, Iām little miss reality anyway, so i donāt do willy Wonker & sugar coat things, we have to keep it real.
You have certainly faced one of the biggest challenges with a mastectomy, Iām so sorry for what you have endured. Mentally & emotionally it must of been so difficult, but physically crikey I can only imagineš
Iām glad the bladder wasnāt cancer, but what a worrying time waiting on the results of āifā it wasš³draining on your fibro again.
I never post on here, but the concern of how fibromyalgia reacts to surgery, was huge for me. I know weāre all different & our bodies will react differently, but Iām so grateful that you & other members have been brave enough to share with me.
How are you doing now after everything? Did you receive any support afterwards?
Luckily, I accepted the physical loss, knowing my Mum had lost her battle with the same cancer.
My McMillan nurse was my saviour+all the follow up appts helped me navigate how to live with the loss!
It's not great 2b lob-sided but heigh ho...
I attended a support group at my hospital which was so helpful and then ran it for 5yrs! I wanted to give back in a real way and help others and it was a great experience but got harder as my M.E. (of then...) became more difficult to manage!
Not sure how I'd manage now with fibro limitations...
I do hope my realism helps in some way?
Your attitude through yr posts is strong and that inner strength is a great asset during this further body assault! I truly envy yr spirit...
Keep strong and accept each day.
And maybe keep us informed in the future? We're all wishing you such love+positivity to get you through these next few months...
Oh my word Iām so sorry for your loss, you really are amazing to get through your huge battle with cancer, but especially after watching your mum go through it too. Huge respect to you for running the support group for all those years, I hope you got comfort in helping others.
I honestly appreciate you opening up to me, it canāt of been easy for you to relive itš
I went through years of domestic abuse/violence and had to learn how to be strong for my sons. I am Mum & Dad to one of them. Also my mum was a great worrier and tried to get me to worry about everything, I thought no way am I doing that with my life, I use to say āMum I will only worry about things in life, when there is proof i need to worry, otherwise i will tire myself out & waste vital energy i canāt afford to loseā, that was āonlyā when i had the M.E!
I donāt know about you, but I found M.E I learnt to manage, whereas fibro is the devil at play and i canāt manage it the same. Think M.E being muscle fatigue rest helped hugely, whereas the nerves with fibro are insane.
For you to send me your good wishes and think of me is really kindš
Yes, I certainly agree with yr comparison between M.E. and fibro!I'm so worn out with the recovery stage of coping with other lesser health issues, that I recognise the last 6months hv been so very different from living with M.E. limitations...
The overall weakness narrows living to a fraction & it makes me so sad...
So sorry youāre feeling sad, itās understandable Wobblygirl, this fibro devil dictates our life so much at times.
layered ill health is the pitsš
Iām still recovering 2days later, after driving 3hrs from Liverpool the other day. My body hurts so much I feel sick with it. But itās the price I pay for driving to see my relatives unfortunatelyš itās a frustrating knowledge before I set off knowing how ill I will feel from it all & how many days itāll take to recoverš„ŗ
Maybe it's the sunshine but I feel more motivated today.
Woke up far too early and got a few tiny jobs done with frequent resting...
Always good for the soul???
I'm not surprised yr 3hr journey took it out of you? It's early days...
Take it easy and enjoy some sunshine if you can?
It's not always bright in every area though is it? Hoping where u live has a blue sky to gaze at...
Should b on prescription!!!
Wx
Regarding fibro groups, I met a few folk earlier this week and I got fed up of their constant drug+supplement comparisons! Seemed like a competition whereas I've chosen not to rely on a drug regime until real crises when pain killers are needed!
I feel more heard on this site than the meeting up type liaison?!?
Makes me sound ungrateful though, doesn't it?
Thank you so much for these interactions...
Take really good care of yrself as you step nearer your op and become more prepared... I think this stage can be worse than the reality?
Do message me any time too, whilst you're waiting as it's a tricky time that lots of folk don't truly understand...
I'm a late owl so any time is fine!
I understand yr scenario with yr parents too! I was a long distance carer in my 20s and 30s and it really saps you without really noticing what pressure you're under because you want to be a good daughter???
3months aftr my Mum dying I was hospitalised+it was if my body made me rest because I just couldn't stop caring...
Mine was an infection that got me in the end, but one doesn't realise how run down and run over you are by the years of caring and so when you get ill you really fall very hard!
I believe those years of neglecting myself led to severe depression and to the dreaded fibromyalgia route???
I try and warn other carers to look out for those tell-tale signs that we all too often ignore...
However, if you're a caring person it's nigh on impossible to switch off, isn't it?
Forgive my 'lecture' but I know all too well how hard it is for carers to look after themselves... They've not had too much practice!?!
You have survived so much, I can tell you truly understand and itās members like you Wobblygirl, that have bravely opened up to me, since my post, and been brave enough to tell me your stories.
I think my fibromyalgia came after years of domestic abuse and violence I suffered at the hands of my youngest sonās dad. I survived back then to protect my kids, and like you i was caring for everyone else and trying to hold everything together to guarantee my kids had a good future and a roof over their heads, in a good area. That was with M.E back then, it was a long time ago. But I think it manifested into fibromyalgia.
Anyway Iāll message you privately on here and it will show at the tool bar on the bottom where the āchatā symbol is.
Hi DoubleMalibu I'm sorry to hear of your cancer diagnosis. In regards to your question I'm not sure of the impact of the surgery on your fibro but I do know that having a hysterectomy affects your hormones which in turn can make fibro symptoms worse. As I found recently with my diagnosis of menopause beginning, the HRT seems to help and I read Davina Mc Calls book on menopause and found it a great help. Hope this helps, gentle hugs and good wishes for your surgery ā¤ļø
Love a good jelly beanšespecially those well known ones, that are very flavoursome š
Iām glad to hear the HRT is helping you, are you on the combined estrogen and progesterone? Itās not easy when itās layered with fibromyalgiaš
Iāve been going through it a long time, was still being told it was peri! But now they think the symptoms I was begging for help over to my Gp, were actually due to the cancer and Iām actually post menopausalšbut I think itās all got so bad, because the Gp didnāt instigate investigations in 2022, when the Gyni requested it.
Did you watch Davinaās menopause programme few yrs ago too? It was positive it was highlighted.
It seems I've been peri for quite a number of years also. It's the estrogen only because I take a progesterone only pill for a condition called adenomyosis, its like endometriosis but between wall of the womb and the muscle on the outside. If I don't take the pill I get extreme abdominal pain.I don't think I saw the programme which is why I got the book. ā¤ļø
sorry to hear your news and sending you a gentle hug. You sound like a very strong person and have been through a lot so Iām sure you will cope with your coming op very well.
Others have some very good advice but I just wanted to let you know I am sending you my very best best wishes.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Fibromyalgia diagnosis help
Diagnosis
Fibromyalgia- Iāve been diagnosed 
RA vs Fibromyalgia
24, London, Living with M.E & Fibromyalgia
