Anyone on stronger pain meds than tramadol please? Advise needed regarding pain management.

[Eggcustard]

Hi everyone, I am recovering from a total hyst and excision surgery at the moment. I have been in chronic pain for nearly 3 years now and have been taking tramadol for longer than that. I have scarring inside that joins my ureter, bowel etc together that is affecting the nerve going down my leg and I have horrible groin pain. I was hoping that it might improve after the op as a big lump was removed but I can still feel the pain. I am finding that tramadol doesn't work as well as it used to so I also take strong co-codamol.

I was referred to pain management a while ago but they don't seem to have a clue what I am talking about. My pain certainly isn't managed and my mobility is also affected, I can't walk far at all. I am going to wait 4 weeks or so and if there is no improvement ask to be referred to a chronic pelvic pain specialist.

I think I need stronger meds to control the pain as I am currently spending most of my life in bed, but they haven't offered me anything. They don't seem to believe that I can't walk very far, I have no life at all.

Has anyone else been prescribed stronger meds? Was it through a pain specialist? Do you take them everyday (the growing pain is more adhesion and nerve pain so is constant). How do they make you feel? I am starting to think that a lower dose of something stronger would be better for my body than taking max dose tramadol with extra on top. I feel sleepy all the time because of the meds and wonder if stronger meds are worse than this. Any advise please????? Xxxxx

[ncoplin]

Wow, so sorry. Definately see a pelvic pain specialist. Keep looking, you will find someone in the pain specialist area. It does take a long time to find them. I am in the US. I had a hysterectomy 4 yrs ago. I have nerve damage that has affected my bladder, colon and the entire pelvic floor. I have seen so many doctors. I was on Fentanyl patch for years and I ended up with a condition called Narcotic induced hyperalgesia. The pain meds were increasing my pain and causing constant withdrawal. I went to hospital to get detoxed and they put me on a drug called Suboxone. They give this to drug addicts to combat withdrawal symptoms. My pain doc then put me on a patch of Buprenorphine. Trade name Butrans. It is a life saver. It lasts 7 days and for breakthrough pain I use a small dose of Suboxone 2 times a day. I am now going through Physical Therapy with a Pelvic floor specialist. Also hard to find. It is helping. I have been where you are. I am so sorry. Check out these options. I have had many many different procedures, implants, shots, medications, accupuncture, hypnosis, biofeedback, tens unit, lots of meds.

I am now at a point where I can pretty much function okay. Still have some bad days, but I am up and living. Good luck.

[Eggcustard in reply to ncoplin]

Thanks for the reply, I have heard a lot about butrans patches, they sound great. On the other hand I am very worried about dependency. I have spend so long researching endo and now need to swithc to chronic pain/neuropathic pain research.

I am glad you are managing to function at the moment, it makes me realise there are many different options out there that I haven't tried yet so thanks for that. xx

[PPSN_JudyB Pelvic Pain Support Netwo]

There are various possibilities, what part of the country are you ?

[Eggcustard in reply to PPSN_JudyB]

Hi, I am in the midlands. I have heard Oxford are good but don't know whether I am better off going to the pain consultant at the specialist endo centre. I think I have 3 types of pain:-

1. cramping endo type pain (gone at the moment after the hyst)

2. adhesions pain where my right ovary was and where they big nodule has just been removed from

3. nerve pain down my leg and running underneath on the right hand side (told genitofemoral nerve, or ilioinguinal or lateral femoral cutaneous or obturator nerve) don't think it's pudental nerve.

If you have any ideas I would love to hear them, thanks xx

PS I already take amitriptyline 10mg which helps but pregablin didn't agree with me at all.

[PPSN_JudyB Pelvic Pain Support Netwo]

Is Bristol accessible from where you are ? the people there will be familiar with this. Dr Greenslade is the pain specialist linked to the endo centre there.

[Eggcustard]

Hi, I have been to the Bristol endo centre but had to find someone more local to do my hyst because I didn't fancy trying to travel back all that way after the op. I have just heard about Dr Greensdale but didn't realise he was part of the endo centre so thanks for that, I could ask Mr Vyas to refer me. I had seen his name (Dr Greensdale) mentioned but thought he only dealt with pudental nerve entrapment, if he can help with other nerves too that would be great. Is he the best??? for you to recommend him means that he must be good, don't get me wrong I'm not expecting miracles just someone who understands

Thanks so much for the info.

[Hidden]

Jane moore at Oxford is amazing. She is a gynae but more importantly, she is a highly skilled pain specialist.

X

[Eggcustard in reply to Hidden]

Thanks so much, I had heard about Oxford but didnt know the consultants name, thanks for that x

[juliansmom]

Nortriptyline saved me from death from the nerved pain. And every other med I tried made me sicker. I take tramadol plus two ibuprofen for flare ups. They work well together. Also magnesium further reduced my pain and stretch that bad leg as often as you can. Sit on a heating pad. Drink tons of water. Good luck.

[Eggcustard in reply to juliansmom]

Hi, I just replied to you on my other thread that you answered but wanted to say thanks for replying to this one too! I might need to increase the dose of amitriptyline as I'm only on 10mg, I will def look at magnesium too xx

[shellysanders]

I take Oxycodone, pregabilin and duloxetine but the pain specialist has said the pain will never be completely managed

[Eggcustard in reply to shellysanders]

Thanks for the reply, tha'ts pretty much what they said to me too, I am getting a second opinion but assume it will be the same, I have to learn to live with some pain which we all know is really hard x

[marybeex4]

The last pain clinic I attended actually told me I would probably have to learn to live with the pain as it is difficult to diagnose what was causing it. I lost heart at that point as my condition HAD previously been diagnosed and my notes had obviously not been read properly. Just don't give up!! I learnt so much through this site about my diagnosed condition at least I was able to get the correct medications and find consultants who knew more about this condition. Good Luck

[Eggcustard in reply to marybeex4]

Thanks for the reply, I was told this too and am seeking a second opinion, it can seem like going round in circles. I agree - never give up!!!