No diagnosis - how do you cope?

[purpledragonfly]

I have been told I may never have a diagnosis and its not worth looking for one. How do you cope with this ??

Is it in my head?

Should I give up trying to find answers?

[PPSN_MariaZ Volunteer]

Never give up. It is not in your head.

Unfortunately we are complex creatures and orthodox medicine doesn't always have all the answers; and sometimes it takes time and many doctors to diagnose some of your symptoms. What are your symptoms? You could try to find the way to alleviate some of your symptoms while you are trying to have a diagnosis.

I was diagnosed 17 after my symptoms started (this was about 3 years ago). Then, I was denied further exploration, even though I have more symptoms and I know something is (or things are) wrong, and gradually getting worse... but I don't give up. I'm not saying it is easy but, in my opinion, there is no option... doing nothing about it is not an option for me.

When the world says, "Give up,"

Hope whispers, "Try it one more time."

~Author Unknown

xxMaria

[purpledragonfly]

My symptoms are chronic pelvic pain as apparently is my diagnosis. My consultant won't run tests. She has put me on zoladex indefinately because it appears to work. But I hate the side effects, I have no options. Its not worth going any further investigation wise, I had a lap nin months ago to treat a cyst. This lasted half an hour max, have now been told this was diagnostic even though cyst seen first. Since then US not managed to locate left ovary, but assures this was positive. During this time pain got worse until I ended up visiting A+E on occasions to get stronger pain meds, coIcodamol, tramadol and ibruprofen had stopped working.

I am angry - hurt and confused. Most people on here have diagnosises - it hurts more that I can't have one. If you know what's wrong you can understand things and own your body, decide what's best for you.

[Hidden in reply to purpledragonfly]

Please dont give up. I had abdominal pain mainly in lower abdomen for months, wasnt given any advice. Was so bad pesterred chemist...told to see gp, which I had . Dietition nor gastro or gp seemed to understand. Eventually did have scan and failrd colostomy, life was hellish due to pains. gastro suggested little tabs to help me cope, which I refused knowing that would make matters worse. Then via site it was suggested I went on soya and lactose free...guess what I started to get results and had long spells symptom free. Not saying yours is similar but chin up, someone will come up with answer to solve problem. Oh I also had uterine pain to complicate matters...had post menopausal bleed turned out not serious and am on oestrogen pessaries which took away that pain and bleed stopped. Lets hope you get progress , main thing is dont give up keep strong even if tough going.

[Hidden]

I really sympathise with you. Until I had a diagnosis, reason for the pain, I was unable to deal with it.

I Decided to try everything, chiropractor, bowen technique, Chinese, physio, crainiopathy to name a few. Although they didn't give a full diagnosis they gave an insight into the pain process, where it was coming from, how my body reacted (mainly muscles locking up) and we managed to break a few of the pain cycles to get to the real cause.

Once these were unlocked and the real pain cause was apparent I went to my doc for a diagnosis armed with all the info from the alternative therapists.

Usually pain that does not have an obvious origin is trigger pain. One of my triggers is in my side right under the ribs and this makes me feel sick when it goes off. There is rarely a reason for it going off, just other pain processes firing off in my body.

Few drs undertsand pain and any pain that cant be calmed with moderate pain killers is more than likely a trigger pain. I rarely go to the doc with my pain because I know they can't do anything about it.

Its well worth exploring. There are a few articles on the net. Then go to a sports physio. They understand triggers and which ones give the symptoms you have. They will also show you how to release the trigger, so you can treat it yourself. It will take a few sessions, and can be painful - your body is being reshaped, muscles are being asked to do opposite of what they have been doing. But there will come a time when it all calms down and you will have less pain.

I would suggest doing one thing at a time so you can monitor what works. Talk to the therapists, get as much info from then about your body as you can. Depending on their experience and curiosity, they will more than likely focus on differe nt issues. After a few weeks you will have a map of all the processes going on in your body, what worked, didn't work, and a list of potential diagnoses. Then you go to the doc to explore them.

Sometimes you do have to do the work yourself. But you need help from those that can help. Give yourself a max of 6 weekly sessions with each therapist. If something is going to work it will in 6 weeks. Ask them to write you a resume focusing on their findings, treatments and results, which you will eventually give to the doc. With each new therapist you visit, challenge what the previous ones have said. At the end of all this, you want a couple of firm possibillites for a diagnosis. these are what you start with and then work through all the others

Good luck with your journey of discovery.

[authoressgirl in reply to Hidden]

The idea of having physio and unlocking pain that way sounds like not a bad idea. I'd be willing to try, even if it's to get an insight in how to cope and manage the pain - which Western medicine doesn't really offer unless it's getting pretty dosed up on heavy pain killers....

[authoressgirl]

I'm in the same boat as you - I have been told that I have no pathological reason or cause for my pain. I'm about to get an IUD inserted next week which should hopefully lessen my periods and hopefully then the pain. I don't think it's all in my head - I don't think yours is psychological either, I mean, it's so bad you've gone on an online forum to seek help! - but right now I'm choosing not to focus on the fact that I don't have a diagnosis because it is hard to deal with. I guess the best way that we can cope is to know that we are not alone in having undiagnosed pain. *hugs*

[purpledragonfly in reply to authoressgirl]

I had an IUD - it was when this was removed that things fell apart. I had infections etc and another one inserted, which had to be removed because I could feel it and was in pain. I have had adhesions (but these are not relevant apparently), cysts (again these were not relevant)! I paid to see a consultant who had a feel said try zoladex and would not investigate further. I am angry that I wasted money - I might as well continued on pain meds and A+E visits.

No one understands about needing a diagnosis and my husband thinks I should accept that I have pain for which is no cause and to just get on with things.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to purpledragonfly]

Who says that adhesions and cysts are not relevant ??? They created havoc for me which has been ongoing !

[purpledragonfly in reply to PPSN_JudyB]

My consultant said they were not relevant to the pain.

I am rather upset with her as eshe did not even do an ultrasound and has said its not worth investigating further.

I don't know what to do or where to turn. I hate not owning my own body, I want to make decisions about what treatment to try and not be forced into things without my ok and without discussion.

As i paid to see a private consultant I thought I would get better treatment than I have. Am I wrong to have expected at least one method of investigation?

[Natalie-E]

Don't give up!! I've been having these pains for 20 years and I'm still fighting to find out what's wrong with me. It's hard not knowing what's wrong, especially when medical professions don't sympathise, telling someone repeatedly that they will grow out of it eventually after they've had it for 15years doesn't help. I've since been told that it's all in my head, and have children and I'll feel better.

Now seeing the pain management team who for me hasn't helped. Been given Tremodol for the pain and I might as well have taken smarties. Next step is to start hormone treatments and rotate them as they stop working after 2 months.

Keep going back and see different doctors until they start to help find a solution to the pain. 28years old and they've got a long wait until I get to point of giving up hope.

All the best x

[purpledragonfly]

Have decided to fight on!

Spoke to private healthcare company, am lucky to have this option. Explained my situation and they have decided to get second opinion for me. Agreed that things didn't add up. So fingers crossed.

Thank you for your continued support and positive thoughts,

[CP44]

I can so sympathise with you all. Have been trying to get a diagnosis for the past year. Had mri ct,all normal. 9 operations, have been told by a couple of drs it could be adhesions because of all the surgery. But my new one tells me the nerve endings in my bowel are knackered like having reynauds of the bowel.. anyone else heard of this? I am beginning to think it is all in my head too..

[Hidden]

The other thing you can do is ask to see your notes. GP's are often economical with the information, In the old days it was considered kind not to fully inform the patient, if it was not necessary.

I saw mine and there were a few things from consultants that had not been discussed. Not serious but made it easier to understand.

[PPSN_JudyB Pelvic Pain Support Netwo]

I'd go a step further and request copies of letters to read and refer to at your leisure. This was one of the most useful things I did. It enabled me to find out about all the things I hadn't been told and wanted to know. In my case the consequences were serious and I'm certain could have been avoided if I'd had copies of the consultants letters earlier.

[JessH]

I have also been told this several times but I refuse to believe that in this day and age with all the technology we have available that someone out there can't find a diagnosis. My GP has also openly told me that she thinks I am imagining the pain I am in - I was very restrained in my reply to her! I know that I cannot be imagining the pain. Everything I do seems to aggravate it and it is a constant pain anyway. I m on countless medications and have had countless tests, scans, investigative ops etc nothing of which have helped. I have even seen rheumatologist who has told me that she thinks I have fibromyalgia but this is nothing to do with my chronic groin pain... Aaarrrggghh!

I have even doubted myself now wondering whether i am actually imagining the pain but I really don't think so. I can't walk without crutches, can sleep, can't exercise or even work so to be honest I can't do a lot...

I am now taking matters into my own hands and finding specialists etc which I think are worth speaking to.

Please don't give up hope - there has to be an answer to the cause of your pain please remember that. I really do hope that you find some answers soon. Take care.

Jess xx