Started LYRICA TODAY / Pregabalin - need ... - Endometriosis UK

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Started LYRICA TODAY / Pregabalin - need Advice on what to expect!

HellyLlewelly
HellyLlewelly

Hi Commumity!

Today I started pregabalin, it was hesitantly and last resortly given to me by Mr Dr who has said I can have it as there is a possibility he can prescribe it for my 3 bulging discs/ annular tear as not licenced in the UK for Endometriosis and we are unsure of my pains origin.

I have to stop taking my Metocarbamol, Ibuprofen and Co-codemol at once.

Ive taken my first pill a good few hours ago now and my back pain is still persisting. I was very stiff and sore on some stretching exercises he asked me to do, searing pain into the area.

Its a dull pain in my left flank area above coxics.

Im a bit unsure when I am supposed to feel pain relief from it? Instant or like a built up effect on suppressing sensations from the nerves?

Are there side effects I need to watch out for?

I got it as amnitriptaline, gabapentin and the like gave me no pain relief at all. Maxitram only lasted 3 weeks before I needed to increase it.

I heard lots of ladies in the past saying this definately takes the edge off pain..

No alcohol on this one right?

Thank you in advance!

Helly.

X

16 Replies
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I was on it for a good 5 years. Wonder drug / awful drug. Helped my pain so much but if you forget to take it, well when I forgot occasionally, it made me shake feel sick and made me feel so anxious. I did drink alcohol with it to be honest and that didn’t seem to have much interaction bar my tolerance was slightly lower. My side effects and pain relief were largely unchanged. It made me feel pretty tired most of the time but I expect I would have been tired without it due to pain. Make sure you phase your dose up as you start it and down very slowly when you want to come off. Good luck!!

HellyLlewelly
HellyLlewelly in reply to Sfr204

Thank so much. Im sorry it wasnt a great pain manager for you Sf, do you have much pain currently?

Im part Irish so have a great drink tollerance 😉😉😉 yet need to be very mindful of this drug.

Thank you, I hope you are managing your pain atm

X

Helly.

Sfr204
Sfr204 in reply to HellyLlewelly

I came off pregabalin a while ago and my pain was much more manageable afterwards so it did really work for me despite the side effects xx

HellyLlewelly
HellyLlewelly in reply to Sfr204

Thank you SF,

Oh great Im glad you definately felt benefits from it that you could see once you stopped pregabalin.

Although my Dr said not to Ive just taken 2 ibufrofen due to a feeling in my left flank quadrant it like a mildy scalding poker burrowing its way from my insides out...constant and dull but engulfing my hip in pain...

Im in bed debilitated and could reach for a knife to cut this area out of my body.

Ive taken my second 50mg lyrica for the day at 430pm and it put me into a "calmer" state so I knodded of to sleep with milder pain relieved symptoms to wake up 2 hours later and need these ibuprofen post dinner. My husband is doing everything atm including looking after out son whos got severe disabilities, working FT and I cant even bend to load our dishwasher.

He came in today at 3pm to find our house in a state, I cant even pick up the childs clothes. I did hoover, I had to.

Im hating the world around me, hating the lack of help and support we get in every direction and Im hating the burden and big disappointment Ive ended up to be to my husband. He deserved a better wife and better deal in life.

I was almost drawn to the black market for pain relief after having practically begged twice to try pregabalin and getting turned down (highly publicised addiction case in the media with 1 half of a celebrity due in rehab for such...) My husband came in with me yesterday to my GP's and we had to talk about my drinking spirits on top of my painkillers to get through the evening meal prep. The clock hitting 5 and me pouring a drink...some days 4pm.

He eventually saw my plea.

He prescribed it due to me so having 3 bulging dics one annular tear, apparently his medical book said its unlicenced for Endometriosis. Its so odd as lots of women on the mainland are on it for such, I dunno maybe they prescribe it for anxiety as the two come hand in hand. Ive been anxious since childhood, like a storm inside me whirling as I tried to keep my head on my shoulders and concentrate.

I believe endo causes anxiety and depression of course with chronic fatigue.

Im really struggling with this med changeover today.

Thabk you, I have to trust it will start working for me.

Regards

Helly x

Sfr204
Sfr204 in reply to HellyLlewelly

Please don’t consider yourself a disappointment, and I am sure your husband and son wouldn’t think of you like that or want you to be thinking like that. You’re dealing with something really difficult and debilitating and doing an amazing job persevering to get some help and answers from the doctors. I can’t advise on painkillers with pregabalin in a professional context but I am sure that I still took them, always have to follow their advice though. Maybe give the doctor a call tomorrow? I am so sorry you’re in so much pain and agony but be reassured if the lyrics is making you feel calmer that will continue. Hopefully it’ll make you sleep better and have more energy too as that in turn I hope may help you feel more positive. There is a light at the end of the tunnel xx

HellyLlewelly
HellyLlewelly in reply to Sfr204

Thabks so much SF for your calming words and a bit of reassurance.

Im 39 and the big b.day is looming soon and its having a bearing on me ...I wont have any smiley faced pics up with "life begins at 40"

This illness is cutrently robbing me of so much plus £136 a month over 5 years we took out for my hysterectomy. So its literally COSTING my life a fortune....

I just didnt think Id be feeling this way nor that endometriosis was a life long disease. No one spoke to me about management.

Thank you again

Helly. X

Sfr204
Sfr204 in reply to HellyLlewelly

Aftercare seems to be a real weak area, keep persevering, the more of us who fight for this condition the more we can make a change. I hope you can have a restful and comfortable evening and a good night of sleep x

Hi, I have been on pregabalin for many years. I still get low back pain and sciatica but it does take the edge off it. It works on nerve endings, I don’t drink alcohol with it as it makes you a lightweight!! It is highly addictive and apparently expensive. I take dihydrocodeine and amitriptyline with it. Don’t think it will work straightaway it needs to build up. Good luck. Hope it helps. X

Thanks so much Gwen,

I agree it will take a while before it builds up.

What is the dihydracodeine?

Ive tried Amnitriptaline (sleeping pill to me) and gabapentin was no use to me it made me eat!!!!

My Dr had 3 conversations with me re this drug before he finally prescribed me it.

I had to state I was drinking heavily to be out of pain just to hoover etc. I really let him know yesterdayIve hit rock bottom.

Red wine went to spirits and I was shopping 2 x 16 glass bottles bacardi in my weekly shop on top of 2 x ibuprofen 2 x cocodemol 15's and 2 x 750mg methocarbamol, a lidocaine patchvand a heat patch and 3 jack daniels just to be up walking!

He was in shock and knows I eas a non drinking fitness enthusuast in the past. Im now 3 stone on and at my ropes end.

Endometriosis symptoms back post hysterectomy bso 8 months ago.

Truly at Rock bottom xx

Thank you so much

Helly x

Hi, dihydrocodeine is codeine based so like cocodamol but stronger. Bless you I know how you are feeling, this pain is debilitating. Many a time I have felt like getting pissed just to numb the pain. Drs don’t understand!!

I have just had private consultation with BSGE specialist. I had mri scan but nothing showed up, I have had total hysterectomy 24 years ago and have only just realised that the pain I have had for all these years is from endometriosis. Don’t think you ever get rid of it!! My next step would be another laporoscopy. I am putting it on hold as I don’t want to go for more surgeries. I am 56 now and thought this was all behind me. My drs are crap. Don’t help at all. One even said it can’t be endometriosis as you have had hysterectomy. How ignorant. They really need to read up on it. You never get rid of it. It very much depends on how good your surgeon is and how much has been removed. Have you tried morphing patches. I have though they didn’t do much for me. Bless you, here if you need to chat. Best wishes xx

Thank you Gwen,

I cant believe I watched on TV a man driving his car with his family into a lake, I actually caught myself on thinking he was "brave" for doing so.

Im daily, sadly, slipping away, plotting ways to do it and how I can escape this life as its not living. Ive had enough anf the tunnel is black.

Paid 6k for private hysterectomy and here we are 8months later with its return.

Im 8 months past total hysterectomy bso and fear "I" fed my bowel endometriosis remnants and cavity remnants to a stage where 8 months later Im once again debilitated - due to no follow up care or suggested management.

Im really having problems with dark thoughts and feel I am too late, too far gone for the couselling thats coming my way.

I wonder if any women have ever passed away as a result of this condition, intentionally or not....

Im fed up with the drinking to numb the pain, Im so over it now.

There is no God, he wouldnt have given me this pain and a disabled non verbal child who I can barely care for.

Im thoroughly done.

X

Helly.

Oh god bless you. Do you ever have good days? Please get help. You can’t go on like this. Have you had a laporoscopy after your hysterectomy to find out if you still have endometriosis? Although we know our own bodies. I didn’t even think I still had it. I seriously thought something had gone wrong with the hysterectomy and that’s what was causing the pains. A few months ago I had period pains!! The penny dropped then.

Do you have a supportive go? That would be a start. Mine is crap. I hate going to her. Bloody German!! I was in tears last time I saw her. Sobbing my heart out and she still wouldn’t help. Seriously thinking of changing practice. They don’t want to know and are ignorant to this disease.

Please don’t give up. Did you speak to your gp frankly? Surely they can do something. How old is your child? I never had children sadly. Tried ivf twice then had the hysterectomy where they told me that would be the end of my problems. Yeah right!! Please take care. Sending you best wishes xx

Awww Gwen Im so sorry about your losses. Yes, infertility is hand in hand. Im a miscarriage survivor too. Our son is 4 he is just in a special needs setting since October, 5 days per week 3 hours per day, its a massive help.

Im not alone it seems - i literally have been having ghost ovulation pain and cyclical pain and back pain is the worst at the T.O.M on my calendar I wd be due on. I would be due menses on 15th every month so ovulation toward the end like 29/30th amd I get pains EVERY time twice monthly since month 4 post hysterectomy! Ive actually blogged about the ghost period pains amd ovulation on this site!

WE BLOODY KNOW OUR BODIES!

What age were you on your T hysterectomy. Did you have tubes and ovaries taken too. I whipped it all out even cervix for fear of anything escallating in the future yet look at me, 8 months later and my bowel and pelvic cavity still retained cells and I know its grown like wildfire. Im on a very high dose of HRT to avoid migraines on low doses.

Semi painful morning urination is back at 7 months plus frequent urination. I even boasted that this bonus was my uterus moved out and bladder moved in! Now that bonus is also gone.

Im having trouble with tights and leggings on my tummy again, pain and pressure. My cognitive ability is also affected, my mind was as clear as a bell post Op!

My bowel was shaved, since the Op Im full of gas, gassy stooling, stooling on just sitting to go pee, its like theres a constant pressure to make poop, I think even a squat could produce poop.

I cant take a bite to eat in mornings or a sip without the chain reaction starting....then loo.

I can go 4/5 times (stooling) before 1230pm.

I have been distracting myself doing up my home over the past two years yet cant get out of bed to enjoy it. To make our home a family 😫

I cant believe all those years and you didnt think endo was your culprit due to misinformation

Its amazing what we believe from them and what they chose not to tell us.

Thanks so much for your support.

Helly.

X

Are you surviving off HRT?

Im on it and Im reluctant to do another lap, Im thinking could I try a starvation technique, even post hysterectomy bso could I deptele it amd starve it.

Some women HAVE actually been on Zoladex post hysterectomy and have got it in that order, I dunno if I could do that injection on my hrt.

If I dont get answers soon off the hrt department Im referred to I may have to pay to go to the mainland to see a BSGE accredited endo specialist. Wait lists in Northern Ireland are 18 to 24months plus, we have a hospital beds crisis ongoing.

We dont have any in northern irekand unfortunately.

Im really lost now, feeling so stupid for paying for a hysterectomy for something that cant be cured it seems.

I was endo symptom free for 4 months but that time I was swelly belly and recovering from my huge surgery so it was no use to me.

I wasnt mobile yet.

Little did I know the b@sdard was feeding off my hrt and by month 7 I would be right back where I started in January 2018, 6k in debt to it.

What a rottemn lot in life to be hit with this.

Regards

Helly.

X

Hi, I was put straight on hrt after hysterectomy. Was on it for 20 years. I didn’t know then that it could feed any remaining endo that was left behind. I came off it but menopausal symptons on top of pain dragged me down. I am on ellestre patch which is a very small dose and that’s working for me. I remember having zoladex before hysterectomy but haven’t been offered zoladex. Guess it all comes down to gps budgets. That’s all they seem to think of!! Forever saying pregabalin is expensive. Don’t know what I would be like if I wasn’t on that.

Can I ask why did you have the hysterectomy privately? Was there a long waiting list ? Did they tell you where you had the endometriosis? My womb was stuck to my bladder. I honestly think I will be like this till the day I die! Some days are ok but then it always comes back to haunt me. It is incurable you never get rid of it. I have read of cases having constant surgeries. The thought if that totally freaks me out. For now I will stay as I am. I too have dark days but manag3 to keep going. Please take care of yourself and get some help. Xx

Thanks so much Gwen the good logical part of me knows Im not well and thank God Im persistent and got help (have PTSS waiting on counsellung starting soon.) Have an antidepressant which is also good for the sweats too its Fluoxetine and very good for the menopause apparently. Just starting that.

Yes - Im "still waiting"on my hysterectomy via NHS Im 17 months into the waiting list and at 9 months I phoned them to get an estimate in February 2018, due to adhoc ie new, urgent cancer Dx, 23 of these adhoc on top of scheduled cancer surgeries a month our hospitals are in the middle of a NHS bed crisis. All non trauma non cancer surgeries have been periodically canx at times. I know a man canx 3 times already for his knee replacement and that was after being prepped at hospital for the surgery!

Thank God you dont live in Northern Ireland. I was told approx 22 months wait and Id done 9 in Feb 2018. I was bed ridden the past two (jan and feb) I couldnt not have this over me for my son starting Special Needs school so we went ahead and financed it. I was totally debilitated with right sciatic pain and almost urinary incontinent.

My nhs gynae surgeon specialist's secretary happened to say to me (I rang her for hrt advice) "your consultant runs a private practice for Endometriosis excision from the Kings Bridge Clinic" I said no way! (as he is known to be the best we have) Id chose that hospital anyway - So I met with him and discussed it and I went ahead and booked him via the hospital...

With the help of Tesco loans 😉

He was originally doing my private surgery in April and I phoned him (he had given me his mobile) and begged him to get me done earlier so he actually delayed his holiday and done it in March 2018! I was rolling on the floor in pain at the time of the call.

I am very very persuasive and have lots of fights to fight considering my son is high needs! I just have to get stuff done Im the mouthpiece of the family!

- You see, my hysterectomy was for severe boggy womb, enlarged etc...endometriosis like you was hiding in me, MRI 2017 May didnt show it up.

As his NHS patient at the time I begged him for Hysterectomyexplaining I was done as had high miscarriage rate and a disabled son I struggle to care for. Bed ridden 3 days a month at menses with 2 weeks of pmt symptoms feeling my womb was going to drop out every day for two weeks before Id bleed....

He agreed and it was his admission of Adenomyosis that led me to go for it.

It was only on him opening me he found my Endometriosis was wrapped around my womb, ovaries and bowel pinned to pelcic cavity. Bowel was shaved of Endometriosis ie excised (I think.) To the point of him "not perforating it."

I trust he got all of it.

What I dont trust is that my combined hrt kept it in check.

I feel riddled again with it and its worsening in terms of back pain and shooting pain every month.

Its a f#cker excuse my French.

If Id have known I HAD endometriosis prior to surgery, plus Hysterectomy wasnt a cure I dunno if I would have paid privately (easy to say now Im not wetting myself and writhing on the floor) I would probably waited for it seeing Il be saying hello to surgery for the rest of my days.

X

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