Adenomyosis and pain killers / pain management

[desist]

Hi all,

I feel like I've come to a dead end with trying to manage pain.

I had most of my endo cut out last April which was all well and good, and put on the combined pill to stop bleeding completely. When my pain continued I had an MRI and they discovered I had adenomyosis. I'm 24 btw.

I had a mirena inserted in November 08 and was told I may have mild pain for a few weeks, maybe up to a few months. But I've had quite severe pain (comes and goes) from day dot and it's not improving. Ultrasound confirmed mirena is positioned correctly.

I've tried nurofen plus, panadeine forte, tramadol, ponstan, all with no success. The nurofen helps a little bit but certainly not enough. The others don't help at all. My doctor doesn't seem keen to try anything else.

Has anyone had this problem and found something/painkiller to help manage the pain? I don't have children but I want to in the future...we're not ready just yet. This pain is really wearing me down and I can't imagine being like this for however many years until I'm ready for a hysterectomy!

I would appreciate any help or ideas

Bec

[chris]

Hi Desist,
Have you tried mixing pain killers, eg 2 pan forte/ 2 ibuprofen tablets???

In my worst pain I use 2 pan forte and a ibrprofen suppository called indisid (sp??). With all this in my system I tend to sleep alot or I am very fuzz in the head so don't do it if your working or driving. I don't like using the suppository very often but they tend to work well and the Dr told me that they do because they are "placed" in an area near the pain so they act better.

I also use visualisation to help me excape the pain/ when I am waiting for pain releif to kick in.

Being in pain myself most of the time I know the feeling of "I have tried everything and Drs are not listening!!!!! ..... I can't take this anymore!!!!"

Take care
Chris

[Elyse84]

Hi Desist,

I am so sorry to hear that you are in so much pain. I know what it is like and it is horrific. I have ademyosis and endo as well so i really do know where you are comming from.

I cant think of the name of what i was on specifically (baby brains!) but it really and truely worked. I was hospitalised a number of times due to the pain - and i had large cycsts in addition to it also, and the tablets i was on worked wonders for me.

It was a high level dose of ibprofen - but high enough that you needed a perscription for it. And ponstan or panadine forte in addition - they did nothing when taken on their own but with the other tablet worked wonders.

But worse case scenario - do what Chris said - taken 2 nurofen and 2 panadine forte - its perfectly safe to do that and if it doesnt take the pain away it should at least put you to sleep so you can sleep through the worst parts.

I hope that you feel better soon hun xxx

[joel's girl]

I second the panadine forte + nurofen. I usually needed a hot shower then to lay quietly and calmly for at least a half an hour (breathing deeply through the pain) to suppress the pain. The medication alone was not usually enough.

I so do not miss those days and whole heartedly empathise with your hun.

After my ops I did get some high dose medication that because I was using as sparingly as I could I used when the endo raised it's head again......but I can't remember the names and they were definately prescription only as well.

[chris]

Hi Girls
Was the medication your talking about in tablet form???

I have just got the indocid out and it is not Ibrprofen like I thought. The active ingr is 100mg of Indomethacin. I use one of these suppositories and 2 pan forte and they put me to sleep. ( You can only get these on script.)

I was also told about a Ibrprofen & codine tablet you can get over the counter, that mix may help you. One of the Gyn registrars that I have seen in the past explained to me that not all meds react the same way in everyone - that is why Dr's start with one med and then go to the next one if that didn't work for you. Its a bit of trial and error to see what is best for your situation.

Have you tried natural theropies - I know a girl who goes regularly to have - her aura cleansed and also has Aqupuncture (sp??) plus other things done to her and she finds it works for her.

I hope you find something that helps you

Take care
Chris

[Elyse84]

On the Natural Therapys - I actually tried Reiki. I was in constant agony and nothing was working, so i gave it a shot. I truely and honestly beleive that it is what helped me. Not just with the pain management - but for my fertility as well. We TTC for about 8 months and were told IVF was our only option due to the damage (combination effect - i have a lot of issues downstairs not just ademyosis) yet the only thing that i changed was commencing Reiki - i fell pregnant the next time i ovulated. So if you are willing to give natural threapys a shot - go for it!!!!!

[desist]

Thanks for the suggestions everyone

I have tried combining pills, it worked for about the first week but I think my body became used to panadeine forte - nothing would make me drowsy at all and yet the pain was still present.

I think the tramadol may have worked a bit more when mixed with nurofen but again, not as much as I'd hoped.

I'll do some research on indocid now - and I'm willing to try natural therapy (acupuncture at first). If anyone knows somewhere good in Brisbane I'll all ears

I'll post updates if I find something that works!

Thanks again

[LJG1969]

Just reading some of the older posts on adenomyosis , im currently awake trying to get through the pain , this is a nasty afflication. Im on endone (oxycodone) but its not helping My Doc suggested heading off to the emergency room, but last time I did that I think they thought I was some junky and left me crying in pain for 6 hours.
Has anyone had any luck with any natural therapies?????

Thanks for your time
L

[desist]

I'll post updates if I find something that works!

Ok, there is a drug called LYRICA - typically prescribed to reduce seizures but works for any nerve pain. I started on Lyrica about a year ago and I have to say it has worked to take away probably 80% of my pain (took about 2 weeks for it to start working). Great stuff, not cheap but private health (extras cover) may help towards the cost.

And if I do get bouts of pain, Nurofen Plus and a glass of wine is typically all I need to feel better now...

[chris]

Hi Bec,
Glad to hear things are picking up for you.
I have found that there is nothing to take all the pain away. It dosent matter what I use these days.
I just keep the pain to a limit that I can keep on going.
The anti dep I am on even helps my pain, but in saying that I also have to take pan forte or Endone.
Because of the anti dep I can't take Nurofen (ibruphren, ponstan etc).
Keep your chin up and let us know how you go.

Take care
Chris

[Belinda Jane]

Hi, after having my tenth surgery (1 laparotomy and 9 laparoscopies) for severe endometriosis, I have recently found out I also have severe adenomyiosis.

I have been managing my pain for what I thought was just the endo and now also adenomyiosis with acupuncture and chinese medicine for 3 years now. I have also recently started seeing a natropath to see whether this will in aid the pain and inflammation caused by the adenomyiosis, along with the chinese medicine.

Will see how this all goes and will post my progress!!!

[nothing2lose]

Hi
Just new to this forum today (this is my first post in fact!) but I suffer from Adenomyosis and PCOS. And it seems like I may have hit the jackpot as I just had an appointment with a reproductive endocrinologist and she is pretty sure I have endo as well....

I know what you mean about pain. I spent last weekend in bed knocked out with pain killers which didnt even seem to touch the pain! That said, I find it best to combine medications - carefully, of course!

Panadeine Extra and Nurofen Plus
Panadeine Forte with nurofen
mersyndol with either panadol or nurofen

It's a pretty crappy way to get through the days AND i resent having to explain to the chemist why I want such strong pain killers. BUT anything is better than the total agony of feeling like you are being stabbed in the back and stomach for HOURS like you do when you suffer with this condition.

Oh yeah, my wheatbag becomes my best friend too

All the best

Nothing2lose

[Belinda Jane]

Gee you have a lovely jackpot of all three, it ain't much fun being female at times

Thanks for the advice on the painkillers, it appears my days of acupuncture assisting with the pain are over,
the adenomyiosis is just to severe for the acupuncture to help. We must have been in pain around the same
days!! I had two days of being a zombie, where I can hardly keep my eyes open, go all pale and feel like every
ounce of energy has been drained from me (and that is before taking any pain killers) followed by two days
of absolute pain. The pain seems to subside upon the period stopping, such joy. Since going off the pill the
pain appears to be getting progressively worse, however with soon to be undergoing IVF going back on the
pill is not an option.

At the moment panadeine seems to work for me, as I am still attempting to work through all this. Luckily
my work doesn't mind me working from home, where I can put my feet up, stock up on the panadeine and
keep heating up that wheat bag

With suffering with pain for more than half my life with endo and now the adeno, I am just trying to push through each month in the hope that IVF will be successful!!! I have marked out in my diary the days of each month where I can't
function to ensure that I don't organise anything and can just relax on the days of pain.

Otherwise I am getting quite close to the end of my tether and very much
looking forward to a hysterectomy and a painfree existence

I have a theory though. I figure that females that start running marathons in their fourties are doing so on the
basis that they have a new life after having a hysterectomy and due to a pain free existence, start running
marathons!!!!

All the best to you all

B