Can anyone recommend pain relief? - Endometriosis UK

Endometriosis UK

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Can anyone recommend pain relief?

lyd54321 profile image
9 Replies

I was diagnosed when I was 19 with endometriosis after I had suffered from 7 years of painful periods. I am now 31 have had 14 laparoscopies over 12 years they find it grow back every time and had excision surgery done in June. Since the surgery my already bad pain prior which normally relieves after an op has got worse. I have tried a mixture of nurofen plus, paracetamol & codeine but remain in pain for 14 days of every month. ( a week before my period and during) I'm now on ponstan forte which I took for 2 weeks and am still in agony. I have to take about 5 days off work every month and the endometriosis is ruining my life. I really want a child of my own so a hysterectomy or going on the pill isn't an option at this point. Can anyone recommend anything?

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9 Replies
Seaside1 profile image
Seaside1

Hi there,

I'm a similar age to you and in a similar situation wanting to try for a baby, I find that tramadol is the only med that helps ease the pain for me, have you tried that yet? I take this along with stemetil, voltarol and paracetamol. xx

LadyPenelope profile image
LadyPenelope

My pain is so bad I've been prescribed morphine sulphate tablets. No other pain killers seem to touch the pain. I also got a referral to a pain management specialist which I found very useful. Try speaking to your GP about stronger pain medication while you wait for a referral to the pain management guys. All the best.

shukudai profile image
shukudai

I just had 3rd lap and I felt I had enough of it but you had 14 laps!? I really feel for you.

Have you ever consider using a TENS machine? I use a Lloys Pharmacy Period pain TENS machine as well as painkillers (Naproxen, co-codamol and Buscopan etc).

My Tens machine is this:

lloydspharmacy.com/en/lloyd...

Tramadol works a bit for my pain but it space me out so I can't use it for workdays or even at weekend if I need to drive or look after my family. Voltarol/declofenac gave me severe stomach upset even though with stomach tablets/foods. I think Naproxen is the strongest NSAID I could take and I still have to take stomach tablets. And they don't really take away my pain really.

The TENS machine took a couple of cycles to kick in to work as a painkiller but now I can live with Naproxen + co-codamol + Buscopan + TENS machine during my bad weeks (for me 10 days before my period and about 4 days into my period). Some bad days I have to lie down some time but I haven't have time off from work because of my stomach (endo) pain.

TENS machine says there is no side effect like tablet painkillers. I would recommend it you.

Take care.

lyd54321 profile image
lyd54321

Thank you all for your responses. I am so fed up of the pain, but so hard to know what to do. So many years of putting up with it & just no idea what to do next. I will speak to the doctor about tramadol & will be investing in a tens machine! It's so nice to know there are others out there in a similar position. It's so hard to get others to understand how bad the pain gets - especially my work!

Merlion09 profile image
Merlion09

Hi - last month on the virtual Skype discussion we discussed pain with Dr Mike Platt at the Queen Charlotte's and Chelsea hospital - they are putting together a multi-disciplinary team especially for us endo suffers which includes pain management, urology, gyne- ask your gp to refer you there, Dr Platt is the lead clinician and definitely an expert in endo pain. Hope you can get to him in London - get your GP to refer you.

good luck x

andreasoj75 profile image
andreasoj75

Hi there

Ask your GP to refer you to National Hospital for neurology and neurosurgery Queens square London pain management centre they have dedicated team of nurses, doctors, physiotherapists and psychologists for female pelvic pain! I have been suffering badly with a pain and last month 10.09.2013 I had lidocaine infusion at the centre and hardly any pain! they are fantastic! It is amazing how they can help you, they lots of different treatments they even send letter on my behave to work how they should support me that pain does not escalate and than I have to take time off sick! Please do not have hysterectomy that is not treatment for endometriosis and pain management! It works for some ladies but majority not unfortunately. at the pain centre I met lots of women who had hysterectomy they were told that they will be free of pain but unfortunately more pain and complications with bowels for example, infection of the wound full blown menopause hot flushes, sweating, not able to have children. At the centre they ask you all about your pain, explain how pain works, they offer you treatment, you make together plan setting goals what you would like to achieve, what to do when pain flare up for example. I have been in many pain clinics but they are best in all UK. Good luck soon you will be better, they are days,weeks when everything looks bleak, my GP, consultant gynae and surgeon did not know what to do when last year in August started again bleeding from rectum and pain gradually started worst usual intervention did not work and this year from May NIGHTMARE but got the appointment at the centre in July and what HELP.

andrea

lemmi profile image
lemmi

I don't know the answer to your question.. I wish I did. I am allergic to most pain killers and I'm stuck with only being able to take paracetamol. I suffer from the pain for most of the month, only getting a totally of one week pain free (ish) per month, we are also trying to conceive right now. Good luck I hope you can find something that helps x

Lilyloulou profile image
Lilyloulou

Hi I am in the same boat. I take tramadol which takes the edge off the pain but recently I've found that this isn't as effective. The pain is pretty much constant now and I gave less pain free days. Also trying to conceive and feel list with it all. Hope you find some relief x

lyd54321 profile image
lyd54321

Hi all. An update for you. I was really fed depressed when I last posted so I went back to my consultant. I've had 2 zoladex injections now and can honestly say that this seems to have worked for me. The first month after the zoladex I had severe cramping and thought it wasn't going to work. After the 2nd all i can say is no period has meant no pain! I have suffered with pain for 2-3 weeks of the month for 12 years now and am shocked they never offered me zoladex sooner. The first month I was really moody and spotty but that seems to have subsided. Yes I am getting hot sweats and my skin is dry but nothing compared to the pain I was experiencing prior. I know it isn't a long term fix and most likely when I stop the injections it will come back, but just having a few months with no pain has been amazing. I can make plans to go out, I've been at work with no time off and i can actually make plans. I've suffered from upset stomachs for years and since on zoladex that has stopped as well which makes me think the endometriosis must have been on my bowel as well as is feel so well. I know there have been a number of mixed views on here about zoladex but if you were like me and thought nothing was going to work please give it a try. You never know! I'm only having 3 injections in total so another one at the end of his month but if it gives me another month or 2 of being pain free I am going for it. In the mean time I am going to get my GP to refer me to a pain management specialist so when it all kicks in again (fingers crossed it doesn't but who knows) I can get the right help. I know it doesn't work for everyone but i am so glad I gave it a chance. My depression has lifted so I can actually have a life even if just for a few months. Anyway I hope you all also find something that works for you. Keep persevering! I am a great example of someone who has undergone so many operations and pain for so many years and just a few months of being pain free has given me some hope. X

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