My consultant (at a provisional Endo centre) has prescribed Gabapentin 300mgs for nerve pain. I found this out by a call from my GP who said she had received a call from the hospital. Apparently the specialist believes I have nerves that have either been damanaged by 20+ years of Endo and/or 7 pelvic surgeries!
What makes me grumpy is that the hospital doctor didn't tell me about the nerve problem during my consultation 6 weeks ago !
I wonder if the fact that I contacted PALs at the hospital had anything to do with the extra communication ?
Have any of you ladies tried Gabapentin ? Does it help?
I also received a letter from my local hospital (the one I trust and wrote to asking for a hysterectomy) and they want to see me for a consultation on the 30th April.
It's now 10 days since my deacapepty injection. And I'm happy to report I've not had any bad side effects (yet), just daily headaches.
Sorry for the the essay but my husband is fed up with me and my Endo ! And my poor children get really worried!
Gosh, really really sorry to hear this. I think it's terrible that the consultant didn't discuss this with you, or, if it was something he reflected on after the consult - then why didn't he send you a letter explaining this. You have every right to be very peeved about this.
I think you have done the right thing in going back for a second opinion at your trusted, local hospital.
Personally, I would not start the Gabapentin and would get a second opinion on this first. I really think you should AVOID this drug. Sorry to write that in capital letter but I have experience of this so I really would worry for you if you. You could of course try it (and plan not to go anywhere or do any household tasks, because you won't be able to, unless you are one of the few who don't get the common severe side effects from this drug group.
Regarding experience of Gabapentin, I have not had direct experience of this epilepsy drug - that is used for nerve / neuropathic pain - but - I have taken a very similar epilepsy drug, also prescribed to me for severe nerve pain (in my face 7 yrs ago).
The drug I had was Carbamazepine, which is very similar to Gabapentin - and I only last a few days on it - I was dangerously dizzy, and wanted to vomit the entire time. It also did not help for me pain. It made me very sleepy.
And, these side effects are VERY COMMON side effects with all ANTI-CONVULSANTS which these two drugs are.
You should only take these if desperate and consultants only prescribe them for nerve pain when they think their patient is really struggling. I was really struggling when I had the facial pain and I would have tried anything - and so I did take the anti convulsant but I wish I never had. I could barely walk up the stairs whilst on this drug.
There are just too many side effects with this group of drugs. Anti convulsants such as Gabapentin and Carbamazepine are at the top of the tree when it comes to serious drugs, that deal with serious brain complications. I know that my heart has never forgotten the experience and I often think of how epileptics cope.
But, despite all this - some people can adapt and get used to the drugs, but I don't know how.
Here are a few links. The webmd article actually paints a fairly positive picture of them, I think too positive.
I wish I could help you somehow, and I'm sorry if my reply seems a bit scaremongering - but my experience of these drugs was the worst of my life. I stopped the Carbamazepine and moved gradually onto very high doses of amitriptyline, 50 mg a day. I was a zombie for a year but there were no other strange side effects, but it was difficult to come off (took about 3 months to reduce dose)..
The funny thing is, throughout all this, I am quite sure I also already had (undiagnosed) endo, and the drugs didn't really help, maybe just a tiny bit - for my tummy - but not much.
I would say, give the Decapeptyl a little longer. Also, I'd ask, can Decapepty and Gabapentin be taken at the same time??
I don't know what else to say, but I really think you should wait for that 2nd opinion.
Hiya, just to add a different perspective I have taken gabapentin and the side effects were quite bad to start with but gradually settled (important to increase disease very slowly) I do take carbamazepine(for seizures) but personally have had much less side effects. I have taken amytriptaline at 100mg dose and it had zero effect on me so just shows how varied everyone's experiences can be,
I know many people who have tried gabapentin and had very mixed experiences, if you do take it then just be careful with it! Lots of people get on well with it once they adjust so it might be worth a try! And really doo make sure you increase dose slowly! Sometimes these things are worth a try and hope it works for you
Sorry to hear if your experiences, i really do hope your second opinion is a better experience for you and you get a clearer outlook
Wow, it is good to hear from someone that these drugs worked for - that is clearly why they keep being prescribed for severe pain. Do these drugs also help your endo pain as well as your seizures?
For me, they didn't work for the pain, so personally for me, I felt like there was no point in seeing through the initial onslaught on side effects. Had they worked for the pain, I'd have probably stuck with them, but for me, it was too much of a gamble.
Had I had such a serious thing as seizures I'd have definitely stuck with the drug. Mind you, the level of pain I had was just unthinkable (I could not talk, walk, move my face at all), I shudder to think about it now. I have stage 4 deep infiltrating endo, and pain most days, but my oh my, it does not compare to that horrendous facial pain that felt like I had an electric pylon stuck in my face.
At least it's another option for you Barbara - now that you have two differing opinions, two sides of the story with both our experiences - you can perhaps decide on whether it's worth a try but I would still recommend you have a frank conversation with your specialise and have them explain the impact of this drug to you, side effects of no side effects - you need to know what's the full story.
I wish you well too nayjay, and good luck.
Night night ladies, sleep well xxx
in reply to
Hello YellowRose.
Thank you for the information. I think I will not start the gabepeptin. I've got enough problems without adding to them!
It's funny how your body adjusts to pain! But pain is also so exhausting!
I certainly don't like the sound of the side effects!
I'm 43 and I'm lucky enough to have had children. I only wished I could have my uterus removed (I have adenomyosis and a fibroid) and have my adhesions cut and my endometriosis excised. But it seems that I have to try every drug known to man before the doctors will listen. Which is why I am getting a second opinion.
Just saying hello and hope you're ok. Might be a good idea to avoid another drug on top of your Decapeptyl. You might not be having side effects yet but it is a powerful drug and will be doing something in there. If the injection works you may not need more pain relief? I'm still not sleeping well and like you am sure my husband is sick of hearing about endo . Hope you're doing ok yellowrose- not long to you op now. Happy Easter. Xx
To be honest I'm feeling completely disillusioned with the medical profession. He'd probably just give me more tablets. I'm reluctant to take anything else.
I'll join you on being disillusioned with the medical profession! I think it's the only reason that a forum like this exists. Sorry to hear you're having problems sleeping. x
Me too..... What makes me very cross is that they keep pumping us with medication (expensive) and giving us surgery that offers short term relief and often caused us more long term problem. With adhesions etc
What they should do is invest a lot of money to find better treatment and total pelvic clearance surgery should be normal practice!
If the doctors came on this forum they would see how desperate some of us are.
Problem with endometriosis is that it's not 'glamourous' and it's a woman's disease!
I have to say despite many misgivings I started gabapentine in hospital when the pain team were at their wits end as oramorph and fentanyl weren't stopping the pain. I was hesitant but knew that I had to try something and to be honest I found it really useful in reducing the amount of other painkillers I take. As I have had a hysterectomy and other ops since- very long story- most of my pelvic pain is from adhesions and nerve pain and the gabapentine definitely keeps a lid on this most of the time. I started the gabapentine in hospital so I'm not sure what was the side effects and what was the anaesthetic and other drugs in my system but if there are any side effects for me I haven't really noticed them.
I understand your sceptism about the drugs being prescribed after a complaint being made but that doesn't mean it isn't worth trying, like all the treatments for endo they may work for you or sadly they may not.
As I've said I wasn't convinced when gynaes suggested this last year and was at a very low place when I agreed to try it but it has made several of pain symptoms much less obvious. For me particularly its adhesions psin damage around the bladder that was affecting me daily and that has improved considerably.
That's really odd that your hospital doctor never discussed this with you or even wrote to you in retrospect. Is this the same doctor who made you cry a few weeks ago?
I echo Yellowrose and I'm all in favour of second opinions. Even third opinions! What does your GP think? Also, would it be compatible with that other drug you are on that I can never spell or pronounce, amytrypline or something?
I had some success with getting on top of the pain during last period. Magnesium baths and spray helped but my chinese medicine was changed to a powder to take during my period. It had an anaesthetising effect and I do think it helped.
You might have seen a mad thread I started a couple of weeks ago about Endovan. I received an interesting reply today from a woman in Canada and she mentioned that she had success in reducing adeno pain. It might be of interest to you. healthunlocked.com/endometr... I do plan to try this at some point.
I'm really happy for you that you don't have any side effects with the Decapeptyl. Hope it is having some positive effects!
Yes it was the same doctor who made me cry. BULLY!
I have been prescribed so much and in all honesty, the only pain relief I take is codeine (2x30mg) paracetamol (2x500mg) and diclifenac suppositories (50mg). This combination allows me to function. If pain is as bad as a fortnight ago, I take Tramadol and amitriptyline (at night) also.
For me the best thing for pain is a hot water bottle. My tens machine and a cuddle with my labrador (Ozzy). I refuse to keep taking stronger and stronger medication.
My GP feels that the time has come for a hysterectomy. But after the severe pain I had a fortnight ago, agreed with me that I should try deacapepty (out of desperation) and just review it on a month to month basis.
I think you have the right approach. Would be great if the deca whatever-it-is works. Sorry, I can never spell these things.
That doctor sounds pretty awful. I'd say you're right about the complaint to PALS prompting her to react in some way. Perhaps another complaint is in order! hee hee!
I'm doing fine but my joints get sore if I walk too much. Think it's because of hysteroscopy last week. I'm very lucky that my pain is largely confined to week of period....so far.
Please tell Ozzy I said "wuf wuf"! He'll know what that means!
It's a really good question. My consultant tells me I have no/very little endo and he's been in twice since hysterectomy but that I have an awful lot of adhesion that are now really causing havoc with my bowels creating loops which then create problems like partially blockages.
To me though the nerve pain and adhesion pain was there everyday but the endo cycle would then push the level of pain from a seven out of ten up to a nine or ten out of ten. By addressing that background pain and finally removing the last remnant of ovary I don't get the cyclical spikes of pain. The adhesion pain can be made worse in my experience by lots of lifting, twisting and stretching and for me and my bladder the trick is not letting it get too full for too long. The first pee in the morning would be agony for half an hour afterwards since being on gabapentine that rarely happens. It can still happen in the day if I'm silly and don't empty my bladder before a long car journey etc but its much easier to live with.
I pushed for more surgery last year when it became evident that they had left an ovarian remnant in and it had attached itself to my bowel when one junior doctors suggested gabapentine, two surgeries later and with a temporary colostomy and on gabspentine anyway it's hard not to wonder if I've done the right thing.
I'm sorry if I sound negative I've had hard couple of weeks with adhesion on the bowel creating havoc and being in hospital never ever helps my mental health.
I know you're holding out hope that the hysterectomy will be the answer and for me it was a huge improvement but it was not the miracle cure. Gabapentine or zoladex won't be the miracle cure either but they may improve your quality of life significantly and they shouldn't create more adhesions or nerve pain.
Oh bless you.... You've had a dreadful time. Have you got children?
A hysterectomy will not cure me but as I also have adenomyosis and a fibroid, I'm hoping that the removal of my uterus will help me with the severe cramping (and torrential bleeding prior to mirena) that I have.
I have been prescribed that as well but it was from the pain clinic Dr who recommended I take it for my back as I have problems with the discs in my back.
I recently saw my GP and she said that she would recommend l take it for my back pain as its very good. I haven't actually taken any yet though as the Dr that prescribed it said i had to commence taking it a week after starting Amitriptyline, trouble is Amitriptyline is something I take to help me sleep, I need something other than ibuprofen and paracetamol to help with the pain during the day. I'm suffering with a lot of shoulder pain now, the sort of pain I was told to expect after my lap, thing is I had my lap weeks ago??
Just posted a long waffle answer which seems to have disappeared in answer to the differences between nerve painsmd endo pain. I waffled on and then remembered what one doctor said to me if morphine doesn't kill it then its much more likely to be nerve pain as morphine is pretty good at blocking pain from a physical cause but not good at blocking pain from nerve pain as oramorph tramadol and fentanyl didn't kill the pain I tried gabapentine and it helped xxx
Nope no kids but was in such a mess that didn't feel it was worth keeping organs that were never going to work and I felt were rotting me from the inside out.
Focusing now on losing a shed load of weight so I can have colostomy reversed in July.
I wouldn't wish the last two years on my worst enemy but things will improve ....eventually.
Take care and hope what information you get helps rather than confuses and that you are able to have hysterectomy if that's what you feel you need
I've not read all of the other comments above as I don't want to scare myself. I'm in excrutuating pain and waiting for a operation including maybe a bowel resection. I was fed up of taking a cocktail of drugs on a daily basis including morphine, tramadol and paracetamol, these drugs were still not taking the pain away and I was worried about the long term effects and so I get nagging my GP to refer me to the hospital pain management team. I finally got a appointment, they put me on gabapentin (slowly introduced). The aim was to reduce the tramadol I was on, so far I've nor managed to, but thus maybe because my pain has got worse, the only side effect is that my short term memory is effected. It is nice to get people's opinions from forum's like these, but if a doctor/consultant has suggested you try something then shouldn't you take their advice over a stranger on here? I do know that professionals can be wrong, but hopefully you hear what I'm trying to say. Good luck xxx
I agree with Barbara and in my experience I have received better advice from all the wonderful women on this site than my doctors. There are some very knowledgeable women on this site and many of us accept that they know more than the doctors and would put them to shame. Many women get answers here when they are fobbed off by doctors or worse, sent down a treatment route that is inappropriate.
7 years ago I made the grave error of taking my doctor's advice without doing much research or questioning. I adopted your view that if they are professionally trained in something I know very little about then it makes sense to accept their recommendations and trust them. My doctor has recently got me into a worse mess than I was in and once again, I wish I had found this site earlier so I could have questioned his proposal. I realise that my case is just one experience but the story is repeated day after day by other women on this forum.
If I sound a bit defensive it's because for some of us...this forum is all we have. Maybe you are one of the lucky ones and have a fab doctor. I do hope so and wish you well for your op and hope it solves all your issues.
I was on gabapentin you have to build it up slowly and come off it slowly, I found it one step better than paracetamol but not as powerful as Tramadol, I use to take it at night, so I always had a good night sleep, and it took the edge off.
I would go for the second opinion, you have nothing to loose, you never know he might book you in for a hysterectomy. Just remember he is your second opinion. And if he still horrid and a bully you go back to your other consultant, it will only confirm your first thoughts of him were right.
Hi yellow rose in answer to your question the carbamazepine is great for my seizures but I found them all hopeless as pain relief (which was the intention of the gabapentin and amytriptaline) I have a friend though that once she worked through the side effects found gabapentin amazing! It really is so tricky because they effect people differently, and when you are already in so much pain,adding horrible side effects and pain from drugs really isn't ideal!
Cuddlybarb...I really hope you find something that works for you, keep trying and I hope the next doc you see is much more sensitive,supportive and actually explains what they've found and suggest xxx
Well, all I will say is that my consultant, for my neuralgia, simply prescribed the anti convulsant because he didn't know what else to do with me. It's something that happens in pain clinics, and patients are often pushed to pain management teams when they don't want to treat you anymore. I was desperate so I tried them, to my regret. I also with I had taken the amitriptyline, personally, all they did was allow me to sleep a bit better but I still woke up in pain.
Someone above said not to take our advice on here. No one is saying to do so blindly, this is just a forum where we openly discuss, we are just saying to question things, get second opinions, think twice - for our own good.
We, as endo sufferers have all had difficulty with the medical profession with delayed diagnosis, failed laps,
disbelief in our symptoms. It's well documented that this is an issue with the treatment of Endo, and it's why Facebook groups such as EndoMetropolis exist, so we can all openly discuss what our Doctors are doing. Long gone are the days when we looked to Doctors as gods with all the answers, they don't have them - so we shouldn't say 'Yes Doctor, No Doctor, I'll not question you Doctor'. We are far educated now.
Accepting the prescription of a brain altering drug, such as carbamazepine and gabapentin for endo is a personal choice - but it's a serious drug with long term side effects. I'd accept it if I had epilepsy, of course, seizures are dangerous and serious, you'd try anything. But, prescribing such a powerful drug for endo is what they do when they have ran out of options. This is why you should seek further opinion and most importantly find a surgeon who can treat your endo properly.
A member of my family works in the medical field and it is widely acknowledged that these are some of the most extremely powerful drugs. Yes, take them as a last resort - but are you at that stage? Only you will know this Barb.
A friend of mine was on gabapentin following brain surgery. This was for the purpose of preventing seizures so very little option there. I think you're right about weighing it up.
I am currently on Gabapentin which was at first prescribed for nerve damage from Meningitis.I was really reluctant to add to my drug cocktail,but very glad I did as it really helped.I came off it a few years ago ,as I attend a herbalist and I wanted to detox my body of all these chemicals. However I have been started back on them since last December and have only now got up to 900mg -I take one 300mg capsule 3 times a day. Someone posted about gabapentin working on people who don't respond to opiates and I thinlkI may be in this category .Like you and lots of others ,I am just hoping for pain resolution as have had enough. I have stage 4 endo ,possible adenomyosis and now awaiting biopsy after CT scan. I am desperate to get pain relief ,it just wears the body and soul down-be it medication or surgery and like you have been warned of the dangers of any more surgery. I have ME ,disabled from Meningitis and on top of this I am in 24/7 pain despite a cocktail of drugs. None take the pain away but the Gabapentin seems to take the raw, sharp edge of it. I still cant sleep ,hence being on here into the wee hours.
You are still in early days with the Decapeptyl so I would try to wait at least a month to see how much it helps( for me it was miraculous -total disappearance of the pains).Then if you still have pain then perhaps think about the Gabapentin. We are all different, but my own perspective is that I am having t olive with so many different chronic conditions and constant pain that I want less pain,so I can enjoy my life.I have stopped worrying about drug side effects as without them I couldn't get out of bed( even with them am often in bed with the pains) so for me there would be no quality of life today,never mind thinking about the future.Sorry gone ff track.,feeling very sorry for myself today.
Thanks Brownlow - yes I did actually get some sleep,so am feeling a lot chirpier today.Sleep deprivation is bad for us all as it eventually lowers the mood.
I'm incredibly grumpy and ratty if I don't get my sleep. I've started taking a spoon of concentrated sour cherry juice every day in a bid to increase my melatonin. Not sure if it will work and it's quite sweet so probably will end up with rotting teeth to boot.
I'm ok today. Appointment on Tue with specialist to get the lowdown on everything...but seeing another specialist the following week! x
I have not tried cherry juice -let me know if it works.I am just waiting appointment for womb/cervix biopsy and hoping it will be soon,If not I am off to my GP to push for some action as Gp will not give me decent pain relief ( pethidene only thing that works) in case I get addicted lol.
Am thoroughly disillususioned with NHS these days .
I remembered something about vitamin B12 and nerve pain and wondered if taking this might help even a small bit. I had a look around the internet and B6 deficiency is also implicated.
Apart from that I found a pretty good article on the subject of nerve pain that might be useful psychologytoday.com/blog/co... You know what I'm like! Always trying to find the 'natural' non-med route!
The article mentions under active thyroid too when it comes to nerve pain and I wonder if you've had your thyroid function checked? (this might also explain why you have difficulty losing weight). Wonky (that's a technical, medical term) thyroid function is often in the mix with endo.
Hope things are better for you today and you are pain free.
Oh dear, that's not good at all. Sorry to hear this.
Sorry to scare you but you probably already know that there are some rare cases of endo wandering over to the sciatic nerve. The reason I know this is because I was worried this was happening to me but I think it's very unlikely.
After a year of problems, in September I eventually went to my GP with my bum pain. I would wake at night with a terrible pain in my right buttock at the piriformus muscle. The pain went down the front of my leg and I felt ancient and falling to bits. It often happened in the day time too and made me limp a bit. I knew the sciatic nerve went through the piriformus muscle which is what worried me re endo. My endo pain had mostly been on the same side and I was concerned it was infiltrating this area.
He sent me to an osteopath "with magic hands" and I was completely astonished. After two sessions the pain had all gone. I had been completely twisted with one leg shorter than the other. I told him about the endo and he felt that it could have affected my back and in turn everything else.
The other thing I thought of, before I went to the osteopath and I was trying to scare myself about what it could be, was a hernia of some sort. Apparently they can be very difficult to diagnose in women even by scanning and lap. This is the best article I could find on the subject and it mentions the type of pain you have and also that it can be confused with endo. harmonywomenshealth.com/.%5...
I guess if you have endo a hernia would never really cross anyone's mind.
Time for a hot bath? I'll try to find a youtube vid that might help you massage or stretch the piriformus which might give you some relief. It it's tight it will squeeze the sciatic nerve. xx
The pain is severe if I sit down and when I try to stand up I get shooting pain down my bum all down my knee. I literally can't move for five minutes or so
This is similar to something I do m.youtube.com/watch?v=bLdUH... Decide for yourself if it's possible especially considering the other things going on in your abdomen and maybe get someone to help you. Ozzy?
There are several others on the side bar.
Ideally it would be best to get a help from a qualified person but it is Saturday so that is probably not an option. You will know best yourself and might want to wait until you see someone about this.
I never really know the answer to that. Maybe try both (separately though, as you don't want the hot water battle to melt the ice hee hee!) and see what works best for you?
Curiosity got the better of me though and googling this seems to suggest ice...but also heat! This article might be of use and makes sense. spine-health.com/conditions... There's also a link to some pain relief exercises in the article.
I'm doing ok today thanks. I do worry about not being able to switch my brain off from all this though. It's all consuming 24/7.
I was told by chiropractor that with muscle or nerve cold followed by heat is recommended.Cold helps to reduce any swelling and heat then increase circulaton to heal the affected part.I used 20mins cold spray/gel/ice pack folloed by 20mins heat via hot water bottle very successfully on neck and back pain,but alas it doesn't seem to work on my endo pain.In fact cold seems to make me tense up.
I think I probably have a similar thing with endo in sciatic nerve but thankfully it is not all the time,only if I have been on crutches a while.
It is amazing when I read on this forum,how many of us have similar endo related issues.
Re thyroid - this is a whole extra minefield ! Conventional medicine has a one range suits all approach to hormones - what suits a 6ft,20stone person is meant to also fit a 5ft 7 stone person.I had my thyroid and adrenals tested through NHS - normal ,and the next week one done by Genova Diagnostic( privately through my herbalist) which turned out hypothyroid and adrenal exhaustion -explaining perfectly my ME ,Endo symptoms.Unfortunately unless you can pay for alternative treatments,you go undiagnosed on NHS.
Thanks for info re cold and heat. Must remember this.
It amazes me that something as delicate as our hormones is treated in such a blunt manner. Understanding of hormones is in its infancy. I'm starting to home in on my adrenals as I think they are compromised now. Thinking of getting the function tested and also the thyroid or at least try to support that whole area.
Happy Easter to you all.Adrenal exhaustion is very common with endo as we suffer so much pain and all the stresses that go with living with such a debilitating chronic condition.The thyroid/endo link is well researched and proven.Genova Dignostics is a private lab which carries out many tests.The adrenal and thyroid function tests are 24hr saliva and 24hr urine samples -giving you an average readin g rather than just at moment of test.My herbalist advised that adrenal stress tests taken on NHS are usually raised as the stress of going to doctor for a blood test,will give a large injection of cortisol(unless adrenals are completely knackered,in which case you would be seriously ill).Same applies to blood pressure readings! If you can afford it,donot go on NHS as they always come back normal.
Luckily there is a lot that can be done to support the adrenals and thyroid naturally.Lots of herbs -ginseng,rhodiola,liquorice support the adrenals.For thyroid take sea greens( mixture of powdered seaweeds).This is the area of my ill health that has improved markedly since I started herbalist treatment( over a year now).Two year ago I was virtually bedbound and needed carers to get me up,washed and back to bed.
Other area,as Im sure we have touchd before is the importance of liver support and detoxing.We need to reduce the toxic load our livers deal with through dietary changes,endo diet,natural cosmetics etc.This I did very successfully last year but have undone all the good work since October by having to swallow cocktails ofpainkillers.
You sound very like me,in your approach to health.I have been through both conventional and complementary approaches,a real A-Z in attempt to help my illneses.I still veer towards natural treatments,but endo is one condition which necessitates drugs,hormones etc to make life bearable.
Can also recommend a number of good books on the adrenal/thyroid issues.
Hi Cuddlybarb- was on Gabapentin last year for seizures & nerve pain (it is an anti-epileptic drug normally). Be careful with it as it can actually cause seizures/make them worse. It is a good painkiller but it does come with side effects (I had to come off of it because it made my fits worse) try Tiger Balm Red for the pain it's amazing hope all goes well xx
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Update on my journey 
Maybe TMI? But I need to ask.
After all this maybe crohans
Update and experience on gnrh
Painkillers and long term effects on the liver
