Bad day blues

Hi all my name is Hayley and I am a mum of five youngest five years old. I have suffered from chronic pelvic pain for over seven years. It started after surgery for a ruptured eptopic and two further surgeries one to cut out scar tissue. My pain is all day on bad days. Every day I am on Tramadol, Amitripyline Paroxatine paracetamol and use heat patches. The thing I hate most is the isolation I feel , I want to be able to live a full day without pain. I do not think anyone fully understands my pain and the total way my life has changed, the limitations, feelings of uselessness and the total despair my pain fills me with on bad days. I know other pain sufferers are the only ones who will get it, which helps. I am in a rut of taking painkillers every day I get a lot of infection in my urinary tract I can't help thinking my medication is to blame. I need to know that my flare ups can be better controlled rather than just been given repeat prescription any ideas to help me please.

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  • I, myself, have never heard of painkillers causing urinary tract infections. I would see your Gyn to discuss what might actually be causing them - those are painful. Also, it sounds like your pain isn't being controlled. I know tramadol and amitryptiline are relatively weak and neither did anything at all for my pelvic pain. I dont know about those other two meds you mentioned. But there are several meds that help with severe nerve-type pain. I only take one med - methadone - and it controls my pain and without side effects (I take a small dose/pill). There are others too. If you get your pain under control, you can get your life back. I hope you do.

    Edit: I just looked up those other 2 meds. Just learned that Paracetamol is tylenol (very weak). And the other, paroxotine, is an SSRI, which they found dont really help pain (but maybe it helps with your mood). SNRIs are the antidepressants that some say may help pain. So 2 of your pain meds are probably doing nothing and 2 probably a little bit. The good news is you have a lot available that you havent tried yet to help you feel better.

  • Hi Cardinal. I remember you mentioned Methadone before but I haven't followed it up. I'm on 1600 Gabapentin a day but it doesn't cover the pain. Three questions..Are you in the Uk, has Methadone got a brand name and what category of drug is it. I have cluneal nerve pain and sciatic which at times is unbearable. Thanks.

  • 1600 mg of gabapentin is considered a somewhat low dose. I've heard it takes a minimum of 1800 mg for most people to notice a difference, and many take more (2200 - 3000 mg). I tried all the way up to 3,000 mg and was on it for a few months because I wanted to give it a fair shot, but I felt no benefit at all. However, everyone is different.

    I'm in the US. Methadone is generic - no brand. It is very cheap. It is a synthetic opioid/narcotic that was originally used to get heroin addicts off of heroin, and is still also used for that purpose today, but it has been increasinly used as a pain reliever for moderate to severe pain, and is more helpful for nerve-type pain than other opiates. It is necessary to start at a very low dose (maybe 2.5mg once or twice per day), because it is potent and has a long half-life. After about 2 weeks, you can add more, if needed. Some people say they had a hard time getting off of it once they were done needing the drug, but others have not had too much of a problem since they gradually decreased. I would recommend this med for severe nerve pain. Especially if it is ruining one's quality of life. I dont know how hard it is to get a prescription in the UK, though, and even many uneducated American doctors have a stigma against it because it is also used for that other purpose.

    A pharmacist I contacted recently thought this was a good choice for me, but also recommended Nucynta as a great pain med, so you may want to look at that, too.

  • I am so, so sorry about your pain, and having so much responsibility with your children. From reading your post (obviously I am not a doctor), but it sounds like Interstitial Cystitis. I have had IC for 20 years, and have finally gotten it under control by diet and specific medications. One thing the doctor did initially is put me on a low dose antibiotic for several months, just to kill off any lingering infected areas. Also, I take a women's health "ultimate flora " probiotic (50 billion by Renew Life) that works on killing off candida yet builds "good" bacteria in the vagina and pelvis. (I get this from Amazon) I have felt so much better from this. The tests for IC are definitive, so you will know if you have it.

    I have just had spine surgery for pudendal nerve entrapment. I have been on the couch for a year or so. For depression, I have studied "Mindfulness" and meditation. So many doctors have told me that chronic pain can be helped by controlling negative thoughts. This has worked for me!

    As for medications, I stay away from heavy duty narcotics. The one I take is new to the market, and does not have the same addictive qualities. It is NUCYNTA. This has truly been a life savor for me. I supplement during the day with Tramadol, and I also take a very low dose of Valium (2.5 to 5 mg.) at night to relax the pelvic muscles.

    Best wishes, and all of us in pain on this site are sending you well wishes!!

  • Have you had your peripheral nerves checked? Ilioinguinal iliohypogastric and genitofemoral nerves. Ask to have them blocked. I had a neurectomy and I'm 80% painfree. Look up Dr. Lee Dellon his website shows the nerve pathways

  • Pepper, did they actually remove those nerves? And are there any issues from having the neurectomy? I think mine is the pudendal nerve or possibly the posterior femoral cutaneous nerve, so I wonder if Id be able to get those removed. Im guessing not. Ive been thinking of freezing them.

  • No they didn't remove them, they cut them. You can't cut the pudendal it's a motor nerve. Don't self diagnosis, I thought mine was pudendal for 9 months and was treated as such but it was the genitofemoral nerve. I'm about 80% better

  • That is so interesting (and great) to hear. Did Dr. Dellon do the procedure, then? I'll take a look at the nerve pathways. There are so many nerves in the pelvic area.

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