Is it important to you to have a diag... - Pelvic Pain Suppo...

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Is it important to you to have a diagnosis ?

PPSN_JudyB profile imagePPSN_JudyBPelvic Pain Support Netwo615 Voters

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37 Replies
PPSN_MariaZ profile image

Having a diagnosis and learning about my condition has changed my life. I felt anger “Why me?” and fear “What’s going to happen to me?”, but I also felt relief “It’s not my fault” and hope “I can do something about it now that I know what it is”. After being diagnosed, I have not felt guilty or weak any more. In my opinion, diagnosis is essential to feel empowered and manage your condition and your life. .

molane profile image
molane in reply to PPSN_MariaZ

it helped me to have a diagnosis, and to know my condition was incurable, but treatable.


jacquieb profile image

Without a diagnosis there is no treatment, right? So a diagnosis is imperative , the sooner you have one, the better chance you have of making some form of recovery.

PPSN_TracyM profile image

Getting a diagnoisis is so important' Knowledge of your condititon allows you to make informed decisions about your treatment.

helenlegs11 profile image

Getting a CORRECT diagnosis is almost the 'holy grail'. As said above,' life changing', 'imperative', 'so important'.

It's also a justification for all the pain and suffering. In a 'Hey I'm not a mad, hypochondriac, whinger after all' kind of way.

Of course THE elusive most sacred object is to receive successful treatment which again, as detailed above, can only happen when CORRECTLY diagnosed.

Penswift profile image

I have spent four year searching for a proper diagnosis for chronic abdominal and pelvic pain. A diagnosis, or hope of a diagnosis is surely what everyone hopes for. A diagnosis is a validation of one's symptoms, and gives professionals a base point so that they can all beat the same drum instead of their own individual beat. Also, diagnosis may mean proper treatment or even a cure. A diagnosis is some sort of closure in a way which enables you to move forward.

in reply to Penswift

Yes Very Well Said...thank you, with the diagnosis of a condition,the Drs know exactly wat they're dealing with,that's how they diagnosed my Chronic Abdominal and Pelvic Pain is due to Adhesions,and its horrible,no life hurting all the time..!!!!

Natalie-E profile image

I don't think I will ever get a answer as why I have chronic pain. Right now, I just want to lead a normal life with my boyfriend, who has been brilliant. Its not fair that he is effected by my illness and I'm told by health professionals to life with it, and have a child. That to me isn't a medical answer.

dknees4 profile image

After a year and a half in & out of ER and nearly every test known to man, I went on the John Hopkins website. I punched in my symptoms and one item popped up: Chronic pelvic pain disorder.....voila. This pain is like no other - it is close to being in labor 24/7 - it never lets up. The article said a urogynocologist treats this condition. I lucked out and got one that had actually studied at a pelvic pain research clinic. I was his first patient with this disorder but after three trigger point injections and internal physical therapy I had 90% relief. Going without a diagnosis is agonizing. Three primary care physicians had never heard of it or said it doesn't exist......frustrating..!! For a year and a half I was on a fentanyl patch which is no life. I assumed I would die in the condition with no one knowing what was wrong. My diagnosis was a direct answer to prayer. I've had two flare ups in 6 years. Pain medication is extremely important until you start the injections. I continue to hope they find out what causes it in order to obtain a permanent fix.

cdonn50 profile image
cdonn50 in reply to dknees4

Googled John Hopkins website, so many came up. PLEASE can you direct me to the website that allows you to put in symptoms and get a diagnosis, like you mentioned in your post

purpledragonfly profile image

Not having a diagnosis makes it hard to understand why you have pain.

I would like a diagnosis but it seems I can get sympotamtic assistance, but no answer to thew cause and am told basically to get on with life. But it all pain relief for a specified length of time. I would like to help myself be well but can't if I don't know what's wrong.

A diagnosis empowers you to help yourself, to move forward and take action to make life better!

triisa profile image

I asked my GP for a diagnosis for something that had been troubling me for a long time and was advised that there were three options

Misdiagnosis - (not helpful)

No Diagnosis - (not helpful)

Diagnosis -

Basically, I needed to wait, they could not rush a diagnosis or ignore the problem.

I ended up with four diagnosis, and felt relieved that I was not going mad and genuinely did have health problems for which i now receive medicine and treatment for.

The health problems symptons all overlapped each other!!!

Quite hard to make a diagnosis, 7 years of tests and referrals.

watkiss78 profile image

There is a huge relief when, you get a diagnosis and can understand what is happening to you. You are always the best judge of your own body and know when something is wrong and not right within yourself. It can take a long time to get a correct diagnosis and in that time you feel low and depressed, often with pain and not being able to live the life you would normally. There isn't always a quick way to treat your pain but the relief you feel when you know what is clinically wrong can take away some of the anxiety you have been feeling.

You always feel vindicated after a diagnosis. It is horrible when you are in so much pain but don't know why. The doctors tend to fob you off with a diagnosis of "Chronic Pelvic Pain Without Pathology" and tell you to learn to grin and bear it!!!

Between 1998 and 2000 I was told my pain could no longer be endo pain because the laparoscopy I had done in 1997 was clear of endo. However, the more I battled, the more I lost and 3 separate so-called experts in pelvic pain and endometriosis said that there was nothing wrong with me. One even sent me off for a ultrasound and the person doing the ultrasound said he could see adhesions!!! My consultant said adhesions didn't show up on ultrasound, but mine did because they were so thick & dense. Even so, he still ignored me and told me that a laparoscopy would be a waste of time.

The paranoia that I walked around with did my head in. If someone had told me that the sky was blue...I wouldn't have believed them. So in October 2000, I flew out to San Francisco to see an endo and pelvic pain specialist in Paolo Alto. He ended up doing 4 hours worth of surgery!!!! The whole trip was incredibly expensive but worth it in the long run. The American doctor had given me back my sanity and my dignity.

I could have sued my local hospital for gross negligence but in the end decided not to. I did, however, write a letter asking for an explanation and an apology, and that is what I got. They did then gang up against me and wouldn't see me any more, so I had to go elsewhere to see a gynae, but I eventually returned there and got my foot back in the door & see an amazing consultant. It is no longer my local hospital, but I still go all that way to see my consultant, because I have such a long history with her and the hospital.

It is horrid being in pain and not knowing why. I still have pain every single day, though I no longer have any active endo. Apparently it's remembered pain and so my GP practice are mean when it comes to pain relief. Once more I have had to fight my corner and so far, haven't lost, thanks to my consultant. She has now passed me on to the pain clinic, something I am not happy about...but I will talk about that later.

Having a name for your pain gives you,something to focus on. It helps you when people ask you why you don't work. It vindicates you because people can't see your pain the way they can a broken limb or a horrific burn. People are funny when it comes to pain because they all seem to think that you are making it up and that can be just as damaging as the pain itself. So when you have a diagnosis you can throw that back in their faces and tell them to sod off!!! Knowing why you have pain means you can then learn to live with it as best as you possibly can, without having that dreaded black cloud of self-doubt hanging over your head.

Isn't it said that knowledge is power? And in this case, a diagnosis gives you that power to battle on and win your corner.

Beckybooboomuffin profile image

Diagnosis leads to information, support and understanding. Mis-diagnosis or no diagnosis leads to distress, confusion and frustration. With diagnosis comes a feeling of certainty or expectation and there's nothing more reassuring than that!

maningi profile image

I have not had a proper diagnosis and have had pelvic girdle pain for 15months. Not having a diagnosis with a clear picture of why I am in constant pain is very upsetting. Especially describing my symptoms to different health professionals over and over again, it feels hopeless.

poppydoo profile image

i was living in constant abdominal pain following a hysterectomy for endometriosis and was desperate for help i needed a diagnosis and this was confirmed as adhesions and all though it is a long battle and living with chronic pain after numerous miss diagnosis of what they thought it was i have answer and although my journey has been to date difficult i now have something to work on when i feel so poorly and always ask if it is the adhesions causing the issue

april6678 profile image

I have been having pelvic pain for some time, and really need a diagnosis. I HAve seen several doctors-the first told me to "just deal with it" and it will get better. I've spent several nights curled in a ball crying in pain without sleeping. The most recent doctor I went to prescribed me a pain med-I asked what my condition was and she said she did not know....try the meds and I'll see you again in two months. Fill the script and see the med is actually an antidepressant....but I took it because doctor knows best right? Two days later, my hair starts to fall out, I can't get to sleep, and I am angry every morning. I stopped taking it.

I guess bottom line is yes, I want to know what's wrong with me. Waking up daily and not knowing if you have a serious problem is hard to take. How can a doctor prescribe meds if she or he does not know what's wrong...isn't that just guessing? I feel out of options and it's very depressing.

poppydoo profile image
poppydoo in reply to april6678

hi april have you been treated for endometriosis or had any abdominal surgery this could be adhesion related i had hysterectomy 15 years ago but the past 3 years have been hell with abdominal pain and then i got diagnosed with adhesions so worth thinking about this huggs to you i know how you feel


AGood profile image
AGood in reply to april6678

I'm new to this site april6678 and I can see it's a long time since you posted this. I hope you got a diagnosis and some correct treatment, I really do. I'm struggling myself right now and the light at the end of the tunnel seems very dim. Best wishes to you.

b-scotch profile image

Severe pelvic pain could be due to a ruptured follicle, an egg that that has not been fertilized.

juliansmom profile image

It was important in the beginning but it didn't make the treatment any easier so in hindsight it wasn't important

Having a diagnosis is important.having being told everything is due to fibromyalgia andnothing else considered.I am not "going mad" and its not in my head.have been prescribed meds for something totally unrleated for what I saw a gp for and no reason given for increasingly worsening symptoms,given pain relief but not a reason for the pain.

Jolantru profile image

My husband has several spine problems that cause chronic pain but there is no name so although he has a diagnosis it is very difficult to describe everything to people who tend to assume he has a pain like a pulled muscle when in fact he can hardly walk as the pain radiates down his left leg.

it is important to have a diagnosis.having been in constant pain for few years and no proper diagnosis.misdiagnosis or nothing,often fobbed off with meds.back and forth to doctors and A&E -and no answers.had several scans and tests but they reveal nothing.

Princessming123 profile image

Going through debilitating pain that you have no reason for is torture. With no hope for recovery, due to no treatment being given, how are you supposed to carry on.

AGood profile image

Having a diagnosis takes away the speculation and fear. It gives us a chance to learn about our condition and how to improve our quality of life & pain management.

Sadielee1608 profile image

This says everything, It's so important.

wynta profile image

I wish that I could get an accurate diagnosis.

faylorste profile image

I have been in pain for years and unable to get a diagnosis. I don't want to be sick but I am, even if it is something horrible I need to know what it is. Without a diagnosis, not only am I not being treated for the cause of my pain, no one will prescribe anything to ease the pain or help me cope with it. All of this combined also causes me to be very depressed. I would give anything for a diagnosis- at this point I think I would even take a wrong one. At least doctors would take me seriously and I could try to cope.

Yes, Early diagnosis and treatment is what people expect from the medical profession. Unfortunately the medical profession don't always provide the standard or quality of care to achieve this.

Arbust91 profile image

ever notice how if someones penis hurts they are not told they are a crazy bitch trying to get drugs?

Korrina profile image

Yes because wothout it i felt like i was going crazy

boston5552 profile image

How can you treat the pain if you don't know where it's coming from? Frustrating, to say the least1!!!

wynta profile image

After more than 20 years without a diagnosis I don't think that I will ever get one. Therefore I will never get proper treatment for what is causing the pain and just have to get by with depression pills :(

Lotus-Blossom profile image

It is very important to have a diagnosis for anything so you know what you are dealing with. People who think otherwise are in denial. I'm surprised you did a survey for this.

Football6-7-2021 profile image

not knowing what it is and thinking it is all in your head is the worst. I needed a diagnosis