I am beyond done with my pain condition. I am not sleeping well so constantly exhausted. Add to that my pain meds hardly even work anymore. I know that I have " better" days but they are becoming fewer. Its hard to feel anything other than despair at the moment 😪. If I ring the pain management team I am looking at a long wait to get a call back. Then what ? More meds that don't work and been told my options are limited. I have internal scar tissue fusion after a ruptured ectopic and then a huge ovarian cyst that they drained 6 months after the ectopic. After that 2nd surgery I had ANOTHER operation as my scar tissue had fused my ovary to my bowel. I was told that had to be my last operation as " it looks like a bomb has gone off inside".I am without a plan to help me have a quality of life worth while. I have given up on hoping anything will work.
Does anyone else have scar tissue fusion ? If so what meds help ? I take morphine and Naproxen and Pregablin Amitriptyline and paracetamol. My pain is unbearable during ovulation and when I walk. I know the only place to be fully understood is here.
Can anyone recommend anything that has hel0ed for them please 🙏
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Poohbear76
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Hi there looked at your post and its a common tale with trying to get pain help other than meds. Have you looked at any pain groups So something like expert patient pain. Epp.
Not sure what is available in your area.
Its so difficult for a guy to comment on the type of pain for obvioua reasons.
I really can sympathise with being pillar to post and feeling helpless etc. If you are struggling with other things like stress anxiety low mood etc . I would advise getting help with those, these will have a knock on to yout pain . I appreciate the pain will also cause these other things and create a cycle. Its like trying to separate all the things out then deal withthem individually I know for certain that
Anxiety has a hige impact on my pain . So dealing with it really helps.hope this makes a bit of sense ..
Hi thanks fpr your reply. I have a diagnosis of cptsd so my mental health impacts my pain and vise versa. It is a cycle that is caused where the stess directly impacts the physical pain. I usually manage to stop the pain getting the better of me but yesterday and today it has kicked my bum !! It helps knowing others understand. I am not good with " groups" as i feel like if its a regular type thing i never manage to attend them alk. The last time i was refferred to a course with pain management i missed more than i was well enough to attend. I did lean to use a tens machine which worked as a distraction.
Physiotherapists also have pain management courses. They will help you to position yourself better to cope with pain. They will show you gentle exercises to relieve pain.
Often pain is caused by the way we tense our muscles in response to pain. It’s a vicious circle because it’s only natural to try to protect the painful area but in doing so create tension and spasms in other parts of of bodies.
Understanding how your condition affects your body is crucial to understanding how to manage your pain.
Why not ask for a physio referral, it might surprise you how movement can help your situation.
Yes, there are some days where you feel 'I've really have just had enough.' Not sleeping isn't going to help. Have you spoken to GP about sleep issues or is it recently with the heightened pain and feeling stress? Medication helps for sure, but so does learning to understand pain and wasy of managing - its like having a tool box.
I have internal scar tissus from major surgery and have had adhesions. On the days when it is worse I remind myself that this today and tomorrow is new day. Tyring to keep my focus on other positive things when I can helps. Making a note of your successes rather than the failure, such as I managed to get to work two days this week, or whatever you have achieved. Pain is real but when medication isn't completely doing it trying to focus on the positive thing in your life, I find does help to make it more manageable. The Pain Course I attended was run by a physiotherapist and pscyhologist and I found it very helpful. Could you ask them if their is one on-line you can do at your own pace?
I do understand how frustrating it is on the days when you feel overwhelmed. You could perhaps talk to your GP about managing your period cycle better? Or ask to see a gyneacologist, although you may do so already.
Sending love and hope tomorrow is a little better for you x
I am so sorry to hear one of the worst problems in 30 years of my issues
My personal opinion excluding what surgeons can, can't or won't do is based upon my own preconceptions of what medicines can or can't do. I personally don't like Pregabalin and not a fan of naxopren. These chappy meds are mean to target the cause/site of the reason for the pain. If I had £1 for every person know who got stuck/addicted to pregabalin I would go back and live somewhere warm and sunny
I use 40mg of Morphine caps in the morning and same again at night. In all honesty I could not say WHAT they do or if they do anything apart from getting addicted in just a matter of weeks then years later nothing has changed. Right now I await a new right knee to go with the left one I got last year and it is very painful as the bony bits are mashed. My Morphine does nothing to help this pain?
The one tablet I take that I can say it has worked is 3600mg per day divided into 3 doses is GABAPENTIN.Designed for people with epilepsy and such conditions it works on the body pain receptors to interrupt the messages to the brain. We 4get that pain is a sympton of a problem and if, as it sounds, you are getting pain from more that one problem, GABAPENTIN. acts on all Neurological pathways and it has been of more use and without side effects than Morphine, dihydrocodeine, tramadol or Oromorpth ( liquid Morphine in alcohol.
I also have loads of scar tissue running almost 24" from the top of my bum towards my lower neck. Every time something goes wrong with my spine and nerve bundles they never go thru the scar tissue instead they open me up in a new spot. I wonder what they will do when they reach my head? And surgery is always on low to mid vertebrae so it just increases the risk of more possible cock ups like when they paralysed 4 ever my left leg knee to foot. Your issues are mostly soft tissue but the body has nerves everywhere and excess scar tissue which comes much later post surgery could be causing any number of pressure points on nerves which in turn delivers the pain .esszges to the brain. My sister in law got pain from the area of the stomach near urethra etc. An MRI identified a growth which was removed and found to be the size of a grapefruit. As these areas in girls are not present in boys so the required nerves are much greater hence the nastier the pain and there is nothing worse as it just won't leave u in peace. Nothing helped my initial spine problem and I was full of various nasty chemical medicines. I don't believe that surgeons have any sense where pain is involved- open us up, take out the likely problem and sew us up with scar tissue that grips our nerves and when that happens nothingis going to provide relief other than interference in the erve to brain pathways. No one understands our pain as we do plus the unwanted side effects such as acid reflux so that's another tablet. I have absolutely no time for the common dismissive replies from the people we trust with our health issues and GP's are on a mission to reduce opioid medicines like Morphine. My honest opinion is that if surgery is no longer an option and it sounds like it has already made things worse to a level where Morphine naxo and pregabalin don't help options must revolve around more targeted pain generating areas and GABAPENTIN is one such medicine. My 'gone to heaven 'mum was a senior doctor in A&E for 40 years and she always told me medicine should be 'horseshoe courses'
I would write a polite but brutally honest letter to your. GP and Consultant laying responsibility for your soul-destroying medical problems and be very firm thslat you expect them to find a positive way out of your nightmare. A letter gets much better results than 10 minutes at a GP's surgery as .any of them simply cannot take in the depth of your issues. If any more surgery is on the books to alleviate high levels of permanent pain you .UST get a full and fra nk explanation of WHAT & WHY ??Knowledge is our only other weapon and you MUST use it because not knowing what is causing the problems/ PAIN you will get a degree of relief. It took me 15 years to doany of the actions I have mentioned above a d even though we have never met PLEASE DONT become another me excha ginger being a Factory Manager with 300 employees and who couldn't wait to be on my factory floor 6 days a week. When my back needed1st and biggest operation the result was short term relief. quitting my job as I couldn't get to do my job the way I wanted to so my staff suffered. I then lost the new house my wife and 2 kids lived inand stayed in a cheap Travel Lodge 4 eight weeks until I got housing benefit and DLA and became a benefits scrounger as istill am luckily our daughter moved with her huge employer to Naples in Florida. got married, earnt sacks of money and purchased a new built to their spec for a reasonable $1.2M and drives a new Porchse with their 2 year old wedged in the tiny back seathe money I had saved from 20 living and working 96 hour 6 day weeks in theArab Republic of Yemen ( don't believe news saying Yemen has Houthi terrorist. They are called Houti's after their Sheikh Al Houthi because they come from villages in AL HOUTH hence they are Houthis - hope that info is found to be 'interesting '. Sorry for long rely but that's as it should be. One point- are you/were you on Pregabalin for Depression ?.if yes it's a crap anti depressant. I chopped and changed but found good relief in VENLAFAXINE and I take 225mg b4 bed and on the subject of beds- do umind masking if u have a newish mattress ? British Medical journal is very big is statistics of 40,000 trials on memory foam mattresses
which highlighted benefits for hundreds of hard and soft tissue problems. They are much cheaper now so my mum in law gotme one 4 years ago and gave me prompt relief when going to bed terrorised me as I couldn't sleep- mattress helped a lot. I wish you total freedom from pain ASAP. Remember GABAPENTIN and a firm letter to your GP - its amazing what they can do when pushed. Keep me posted if u wish to but I would love to hear you have found a way forward. Greatest of good luck and don't let anyone of the hook - not doing that cost ME a TWO YEAR stay in Southampton Neuro ward so if nothing else avoid my mistakes.
Hi thank you for your reply i will ask for Gabapentin i was given the option between them and Pregablin and choose Pregablin. I know i am adicted to it as i once ran out on a weekend and felt so irritable and angry. I was on Tramodol for years and i came off them the withdrawls were horrendous. I am usually very laid back so it was a unpleasant time. I am sorry you no longer have a job,and that you lost your home. It sounds like your pain has taken a lot from you. I also would go live somewhere nice and sunny if i had a pound every time my pain broke through my meds.
Hi PB i was on morphine and it was poising my body and making pain worse i am now off all pain meds and the pain is not as bad the pain meds were giving me a personality disorder as well. i have fibro in remmission from lukemia a new shoulder wrist and knee and puseudo gout. and ostio arthritus
Hi thanks for your reply. Morphine does effect my mood but i am quite strict with it. I am on the same dosage now as when i was f irst prescribed it and only take half the prescribed amount most day, using heat patches and my anti inflmatory instead. You have alot of painful conditions i hope you have found a better way to tr eat your pain.
I am a forum moderator at Pain Concern and have just been reading through your post. I am sorry you are having such a difficult time. There can be some long waits to get an appointment at pain clinics and much does depend on where you are in the country.
I have put together some resources that I think will be of some help to you.
Thank you slouch I will have a look at the resources you have sent me. I am still not in control of my pain and continue to try to to stop booming and busting.
Boom and bust is just the most difficult thing to manage - but if you can master the Boom part and concentrate on pacing it really does help. But just to say I know it is not easy.
Thamks for your reply. I think the worst part for me is the sheer frustration. When my pain prevents me from small tasks such as housework. I feel so frustrated and angry. Then when my pain lessens i am so motivated like i have been released from prison almost. I then throw myself into catch up mode any intention of pacing gone. So the cyvle continues. I need to be kinder t myself i will try to pace.
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IM SO FED UP WITH ALL THIS
Feeling fed up
fed up with pain
Ongoing chronic pain 
Back pain and hip pain
