Trying to find some info out - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Trying to find some info out

Stacey-Marie92
Stacey-Marie92

Hi all I was diagnosed with ibs about 3 years ago but since day 1 I have struggled to believe the diagnosis is correct food doesn’t effect me I can eat what I please and it doesn’t effect me. but this all started when I started doing care work when I started doing a lot of heavy lifting all the signs and symptoms fit so much it’s like i wrote it myself. no ibs treatment gives me any relief at all and I’m too the point I don’t no what to do next my belly is so bad I’ve been prescribed morphine since day 1 when my belly is really bad it looks like I’m in labour I have to breath through the pain and it feels like contractions that are coming thick and fast amd my back is really sore.and then I get a bulgy vagina and I feel paralysed from my waist down I’ve been dealing with this none stop recently and at 26 years old this is not what I want to be dealing with to be told it’s ibs when I no deep down this 100% is not true. I’ve had 3 children close 2 heather and had long labours with all of them and many complications can anyone give me a bit of advice or what pain u are getting so I can compare to see if this is what I get

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9 Replies

Hi there,You sound like me 14yrs ago,and I refused to believe it was IBS,so I went back to my GP,who told me there's no such thing as IBS,it's an excuse when there stuck for answers. Simply because Syndrome can mean anything,it's just a matter of searching it out. Over the past 14yrs I've insisted with whoever I've seen it's not IBS that's rubbish,and quite a few have agreed with me. So make your point with whoever you see you do not believe it's IBS. Now having said that,means you will have to go through multiple tests,to rule out things like Fibroids,polyps,etc etc. You will also have to keep pushing to be heard,if you sit back ,you will end up like me 14yrs later with chronic pain,which had I seen a women's Physiotherapist earlier, I would probably have been 💯 better. Best advise I can give you,is keep pushing for answers,let them know how you feel,and IBS is a no go for you. Mind you Stress can play a big part.

Could you have a prolapse? Nust a thought. I had r children a d i had one. Im y3 now thought, it was a few yesrs ago. Not that pain though. But im interested in your ibs diagnosis, my gastro guy kept telling me i had that, and i kept saying, but i dont have classic symptoms? Any way ended up having diverticulitis, and it was nasty. They jse ibs as sn answer fkr everything. It annoys me. Keep at them. You know your body.

Alaine1
Alaine1Administrator

Hi All,

Whilst I agree IBS can in some cases be overdiagnosed it is a genuine diagnosis and not simply given because they don’t know what the diagnosis is. This a a dangerous assumption as it takes away the huge impact IBS can have on sufferers lives including extreme pain both within the bowel but throughout the pelvis. Not all people with IBS will have diarrhoea or constipation or a mixed type - some will have pain on its on. Current research backs the theory that it results from miscommunication between the bowel and brain. IBS can start at any age from young children through to the elderly and be triggered by a range of stressors including food poisoning, stress at work/in the home etc. Food is known to be a trigger in many cases hence the FODMAP diet but as with all medical conditions there will always be those that don’t respond to standard treatments. There are people who have had success using hypnotherapy. It is possible there are a range of conditions impacting on your pain but I personally wouldn’t discount the IBS diagnosis unnecessarily. Try keeping a symptom and pain diary so you write down what you ate, doing, stress levels etc so you can hopefully find a pattern to your pain and other symptoms. I hope this helps

Gemini71
Gemini71 in reply to Alaine1

Hi Alaine1, As you know if you remember me,I've been through hell for the last 14-15yrs with chronic pain. Now firstly we don't know who diagnosed Stacey with IBS,but should it be a GP,I certainly don't think it could be diagnosed by a GP,without eliminating everything else out. So it really depends on what tests etc she's had.

Why I say there is no such thing as IBS,there's a few reasons. Why is there no test to diagnose it. Syndrome can be a majority of things, you mentioned food,hence the Fodmap diet,I would call that a food intolerance,not IBS.

Perhaps I worded it wrong when I said it was what they use when they have no answers,now my GP worded it like that,so I tend to agree with him,I would be lying if I said it any other way. Also after all this time and I've been through all the U.K. NHS with tests Dr,Specialist and a great many mistakes,I'm still suffering chronic pain. So no I still say IBS is used far to often nowadays.

Alaine1
Alaine1Administrator in reply to Gemini71

The FODMAP diet is a special diet used in the management of IBS and is not based on intolerance. It is a validated diet and is in widespread use by dieticians, gastro teams

nhs.uk/conditions/irritable...

Secondly there are many medical conditions that don’t have tests to diagnose them but there are specific symptoms, questionnaires that can be used to support the diagnosis. Migraine has no reliable medical tests, palpitations which can be measured don’t always appears during a 24 hour ECG recording. This is what happened to both myself and my mum. Medical science is still very much working to establish reliable testing methods for all conditions including pain which can’t reliably be measured. We simply ask that the medical community believe us as well as our friends. GPs are allowed to diagnose IBS as a referral would only be made to colorectal or gastro consultants if there were red flag symptoms such as rectal bleeding especially dark blood, anaemia, unable to keep food down, weight loss etc. GPs would in the first instance do blood tests to check for inflammatory markets, full blood counts to look for anaemia, signs of infection and to rule out IBD.

Thirdly your GP was expressing his opinion which might not be based on facts - it’s merely his opinion. This doesn’t make IBS a lazy diagnosis or a medical condition that doesn’t exist. This very statement is upsetting to members on here who receive that as a diagnosis and are often at the very severe end of the spectrum.

Finally all of us have experienced chronic pelvic pain who run this charity. I’ve had mine for 25 years and it took this time to diagnose me with endometriosis, adenomyosis and interstitial cystitis which have required repeated surgeries and impacted severely on a daily basis on my life. I’ve experienced both the worst of the NHS and also the best. But at a time when the system is under more stress and strain than most people know we have to be fearful of a private system where those who can’t afford to pay private for their healthcare will be at the mercy of the public health system where long waiting times to be seen are experienced and some services/treatments are completely unavailable. So please be mindful of admin and their experiences as chronic pelvic pain sufferers as I run the group on here during my free time and voluntary to help support and inform others in their journey

Gemini71
Gemini71 in reply to Alaine1

Oh please do not think I disrespect your opinions,and I also realise you all do this for free,and I for one have been extremely grateful of your opinions. But I also have my opinions IBS etc,and if we have no respect for our GPS opinions we may as well not go to see them. I totally trust and respect my GP,hence the reason I believe IBS,is a cop out. Sorry but I've got good cause to come to my conclusion on IBS.

I think on these forums people go on there own experiences and I gave mine,then it's up to the person who put the post on,to pick and choose from different people,what she wants to follow up.

Otherwise what's the point of a forum.???

Alaine1
Alaine1Administrator in reply to Gemini71

The forum is actually part of the Pelvic Pain Support Network Charity and as such we have to supply information which is both evidence based and current which is why I have had to ‘correct’ a few points on previous replies. This is true of all medical based charities, Mumsnet etc which is a different type of group has an entirely different focus and people give their opinions freely often without any factual content. Medicine is a constantly evolving field of medicine which is why opinions on the medical community change over time hence why there has been a move away from the idea IBS is a stress related condition to one where there are a range of triggers. GPs whilst many are very good they don’t always have the time to keep up to date on all aspects of medicine nor do some ‘choose’ to if it’s not of particular interest to them.

Do you have a pelvic physical therapist you can go to? I just went to one and they are extremely knowledgeable. I had ob treatment and it did help although I don’t tho k it will solve all my problems. Going to a urogynecologist next week. From what I hear this one may be the right doctor to work with. Sure hope so! So sorry for what you are going through!

Gemini71
Gemini71 in reply to Luckee

I've done the same,gone to see a woman's Physiotherapist and it's been the best thing I've done. Wish I had this knowledge years ago.

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