11yrs of pain and so let down

[Poppy]

I had this pain first 11 years ago. After about 4 years it settled down enough that I could sort of live in a wheelchair. 2 or 3 weeks it flared up again, agonising burning pain all through my pelvis and across my back and between my legs. If I Lie down the colon flutters so violently that I am incontinent. I'm on 3 hourly oxycodone that isn't touching it. This morning my husband screamed at me that I am causing all this myself; that it's all in my head and I've done it deliberately so that I don't have to go away next weekend on the weekend that I have booked and paid for. Oh and I have no more pain than his slightly aching knee. He apparently knows when it's going to flare up; every time I plan to go away or do something and I'm doing it just to foil his plans. He has now shuit himself in another room so he doesn't have to think about helping me and can ignore the pain i'm in. I feel so alone and so let down by him. GP has referred me to DR de Mello but there's an 18 week wait.

[janetm2]

Poppy,
I am so sorry to hear your situation. Can you printout some info on this site and get your GP to try some other medication such as gabapentin, lyrica or cymbalta they are more specific to nerve pain and may work better tha a painkiller. Also tramadol painkillers work for sometimes with the nerve meds and are non narcotic. Also the nerve meds are actually anti depresssants and may help from that side of things. I forgot Amitriptylene is another. Can a friend or family member nearby help you?
Janet

[helenlegs 11]

He just doesn't understand does he, but that isn't so unusual, especially when there is nothing to actually see to confirm any pain and suffering. Thing is there are knock on effects to a partner having a 'disability' and the other person does end up suffering to an extent too.
I know, only too well, how difficult it is to be a kinder and more considerate person when being in pain and depressed as a consequence of that pain. Maybe both of you have got into that situation now because of the individual problems you both have to endure. I'm sure he is just frustrated at the moment, his life isn't going according to plan just as yours hasn't, through no fault of your own.
How long have you been together? I bet there will be more times that he has 'risen to the challenge' that is associated with living with a pelvic pain sufferer. Try thinking of role reversal, what he has to deal with isn't easy. Not that I'm saying what you have to deal with IS of course. The two aren't mutually exclusive, unfortunately.
I'm sorry Poppy but I haven't read any other posts from you, as I haven't been keeping up with things on here lately I will read through them to find a bit more of your history. The only thing that worries me is that if you are sitting all day (wheelchair) that could instigate or exacerbate more pelvic pain? I don't know what to suggest if this is the case although I have heard of a more horizontal wheelchair.
It's good to know that you have an appointment with Dr. De Mellow, I know that he studied with Prof Robert and administers botox and steroid injections therapeutic/ and diagnostically. I don't know what he suggests for those that he recommends for any decompression surgery but I'm sure we will find out.
Maybe he will be able to prescribe something that would suit you better for pain medication? The burning pain you describe is most likely to be a nerve pain, gabapentin and pregabalin are often prescribed for that and some antidepressants. I know that Cymbalta has helped me out a fair bit. Are you on any other medication? If not perhaps your GP could follow the nice guidelines for neuropathic pain which is traditionally difficult to treat.
Sorry if I am rather behind the times with your problems, I will catch up.
Hope things improve and soon.
Helen

[Poppy]

I do appreciate the replies thank you. It hasn't been this bad since it first started in 2003 or so. Then I spent 9 months bedridden. Was on gabapentin and morphine but had to come off gaba as it made me suicidal and did absolutely nothing for the pain. Then was allergic to morphine so went on to oxycodone. Tried everything on the way up to that but nothing worked or like tramadol it made me sick.Managed reasonable since then. Need a wheelchair to go out anywhere as standing makes the pain worse but I don't sit all the time, in fact this flare has made sitting almost impossible. Because I was so bad on gabapentin, GP doesn't want to risk any of the epileptic drugs again and gave me nortriptylene. All that's done is make me like a zombie. GP was sure at first that it was pudendal neuralgia and it is certainly all pelvic but now thinks it's a T12/L1 entrapment. What's driving me crazy is the pain I get when i lie down and the fact that it seems to be affecting my lower colon which flutters violently and pushes everything down at the speed of light. I know that lumbar nerves control the speed of peristalsis in the lower part of the colon. I couldn't sleep at all last night for it. I don't have any other family I can ask for help. Husband has been the same since it first started. It's all deliberate just to annoy him and spoil his plans. As you know neuropathic pain is nothing like a stiff knee. I just can't cope with this amount of pain for 18 weeks till I see Dr de Mello and even then the injections worry me as I had a violent reaction to kenalog (triamcinolone) which is the steroid they inject. I was too dizzy to stand and violently sick for two weeks after an injection. Husband will pick things up from shops for me as long as it doesn't affect his plans but that's all; won't speak, won't help, still expects his washing done and meals on the table despite the fact I haven't been able to stand to cook for 9 years. I prepare food on the floor since I lost my daily carer. (Soc services refused to send one once husband retired and just said he could do it). Shuts himself in another room with his TV rather than be here to help me. But as I said I managed until 2 weeks ago when it all flared up. I just called NHS direct and they are sending a doctor out but I know from past experience he won't have a clue what to do.

As expected he didn't know what to do; suggested beta blockers, buscopan and reflexology then told me to see Dr Mello privately. He was actually very nice and very thorough but still had no idea.

[helenlegs 11]

I think you were wise to call NHS direct, but agree they won't have a clue what to do. However, it will register on the medical system how bad things are. At the very least maybe it will galvanize your bloke into some kind of action ?? but then. . . . .(hugs) I was about to say MEN!! but there are some lovely ones on this forum (waves)
My husband is always telling me off for carrying shopping into the house, which is fair enough. So this afternoon I asked him to get a heavy(ish) bag from the car. NEVER AGAIN! I take such pains to get bargains and good prices, I mean I do feel guilty that I am not working, but I had treated myself to a bottle of pino grigio (half price obviously )
Anyway he had to tear himself away from the bikes on the tele, brought the bag to the front door, put (crashed) it down and smashed my bottle of crisp white!!!! He didn't even apologize! I was SO mad! The shards of broken glass then punctured a bottle of lemonade I had though might go nicely with a cheeky gin.
Inappropriate joking aside, I really do feel for you Poppy. Have you tried lyrica/pregabalin? It didn't work for me but it is a more metabolized form of gabapentin so doesn't have such drastic side effects. Many people say it is a godsend. What about antidepressant? http://www.pelvicpain.org.uk/index.php? ... nding-pain this gives an overall description how these drugs can work.
I have just realized that the bikes are STILL on and Colin has been plumbing in the new bathroom for the last hour. Do you think he feels guilty??
Might go and heat some crumbs up for his dinner
Hope things improve for you Poppy. It's not a nice situation to be in especially without support. BUT I know that everyone here will offer as much support as possible. I'm sure Dr De mellow will have some answers and look forward to hearing what he concludes.

Helen x

[Poppy]

Hi. I do so appreciate your support. NO I haven't tried Lyrica. My GP decided that I was so terribly depressed on gabapentin and seriously suicidal (I see that's one of the side effects) that she didn't want to risk trying Lyrica. I also had dreadful headaches, cotton wool brain and other problems from Gaba. I've tried Amytriptiylene more than 7 times over the years. Every pain consultant insisted I try it and I just can't function at all on it- not even on 5mg. This time they are insisting on nortriptylene and guess what? I'm doped off my head; can't even remember how to make a cup of tea till about 7pm when it starts to wear off. I also have fibro and get dreadful bad reactions to a lot of drugs. I'm down to only one antibiotic that I can tolerate. I also have an auto immune disorder that causes big fluid swellings of eyes, mouth and throat ; like an allergy but without a trigger so drugs are a real problem. I was even allergic to morphine.

[helenlegs 11]

I was the same on gabapentin, really 'thick' and broke so much stuff, wherever I went.
I must say that lyrica didn't have the same effects but of course everyone is different. I did stop taking it however, fairly quickly, because it seemed to work too well in that I have to sleep on my front with my fist wedged in front of my hip bone as a kind of pelvic bridge. It is the only way I can get off to sleep. Lyrica allowed me to sleep any old how and I was waking up in a dreadful state and completely missed that small window of not feeling quite so bad in the morning. I'd really had to fight with my GP to get the lyrica prescription too but had to abandon it.
I'm just taking Cymbalta and tramadol at the moment although I did think I would be further down the decompression surgery route by now. I may try gabapentin again and get plastic plates.
Hope you find a better personal solution soon Poppy.
Take care
Helen

[Poppy]

A better solution might just be to kick out this uncaring unbelieving husband who is acting like nothing happened and he didn't say anything wrong. I slept last night without the fluttering and pain keeping me awake. There's just no rhyme nor reason to it. One day I can sit, one day I can't. One night I'm in pain all night, the next I can sleep with no problem. It just doesn't make sense.

[Poppy]

Thank you so much for that link Sunil. That makes an awful lot of sense. 9 years ago I was given a tentative diagnosis of a T12 problem affecting the iliohypogastric nerve. After months of treatment on the fascia I got it calmed down enough to function. I didn't then have any pudendal pain like now. I do have extreme lordosis of the spine in the sacral area and have always had pain there then 2 weeks ago it was definitely the SI joint that became inflamed when all the new pain started. Unfortunately the pelvic Physio I went to wouldn't touch me as she felt it was a spine problem and she's really only qualified to work on pelvic floor problems. The innervation of that area does make it very complicated to make a firm diagnosis so I can only pray that Dr de Mello has enough experience to diagnose properly and get something done. The fluttering does go along with terrible urgency and extra pain and my instinct tells me to free up the SI joint. I shall print out that report and take it to my GP. Tried to contact Dr de Mello but everything's closed until next week. What a shame pain doesn't shut down for Bank Holidays!
Re the husband reaction, I have decided that that's his problem not mine and as a result am mentally coping a lot better with the pain

[Bobby]

Give trigger point release physical therapy a try... what have ya got to lose. It's brought me much success in only the 4 months I have been following the protocol.

Hope ya feel better