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Appaling medical advice and endometriosis worry

Hello all,

Have to share this with you fellow sufferers diagnosed with IBS or similar digestive/autoimmune conditions because of how stupid the medical advice sounds.

So after nearly 2 years of ongoing battle and still suffering with excruciating pain and all sort of other symptoms, to the point where it's now also severely affecting my work (was signed off sick recently), and my employer has now referred me to a health firm that specialises in Occupational Therapy :( , I decided to have a follow-up consultation with my GP.

I mentioned that I would like to be referred to a pain management clinic (given that all remedial action tested until now had no impact whatsoever in helping manage my pain and other symptoms). Despite me justifying my case with valid statements (i.e. what advantages I saw coming out of the referral, what my objectives where,etc) - I had obviously done my research prior to the visit - and insisting, the answer was a definite "NO". Unfortunately I still suspect I have been misdiagnosed, because although I know IBS is a very individual condition and no 2 patients are the same, I honestly can't work out where this terrible pain is coming from (yes, I have gone through the route of talking therapy, CBT, meditation, etc and that hasn't worked at all for this matter). His reasoning was that in these type of centres they only treat chronic pain to what I replied with "so you think that nearly 2 years of constant excruciating pain to the point that it cripples me (affecting all aspects of my life severely) is not "chronic enough"?

But there's more! here's the absolute stunner that was given to me by way of a professional medical answer: " I think what we need to try now is to work on the "cause" of your issue rather than trying to tackle/solve your symptoms".... LOL duh! wow and it took him 2 years to reach that conclusion blimey! he must have exhausted his brain cells in the process. And what do you think I've been trying to achieve during all this time??

It honestly makes you want to give up, luckily I somehow find an inkling of strength within me to not throw in the towel. And so now I am being referred to a gynaecologist instead, with a hint that it could possibly be endometriosis. To say that I left the medical practice confused & bedazzled is putting it lightly.

Apparently the only way to figure out if I have or haven't got this illness is by carrying out a laparoscopy. So imagine getting yourself cut open only to find out it's not that either?!!! There are simply no guarantees whatsoever.

I would be grateful for anyone's comments or feedback on this subject if they have had to go through a similar experience.

Thanking you in advance!

7 Replies
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Bearing in mind its your tummy thats giving you grief,surely you should be being referred to gastrology for camera up and down, or have you had these?

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Hello Lisahelen, oh yes I've had that done quite a while ago together with ultrasounds both up & down. So you could say I have been checked inside and out back and front :-) All results came back "all clear"

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Hi

Endometriosis didn't seem to come up much on doctors' radar thirty years ago and still seems to be low on their outlook for cause of severe abdominal pain.

When I was sterilised the surgeon noted it but didn't bother to tell me!

I complained of pain for decades and again it was noted during abdominal surgery. This time I was given hormones to check its growth. It had caused a substance like cling film to wrap around my pelvis and organs.

I don't think there's any other way to diagnose endometriosis other than by laparoscopy and if it turns out to be the cause of your pain then it might be worth it.

Good luck,

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Hello Amabile, thank you for your response. I am starting to prepare myself mentally for a laparascopy, should this be the outcome from my gynaecologist assessment. I think it's a risk I'm going to have to take...

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Hi,

I had a laparoscopy done several years ago for suspected adenomyosis which is a type of endometriosis. It turned out I did not have it but surgery was the only way to know for sure and I am glad I had it done. It was done as a day procedure and I was left with 3 small incisions which healed well. I was seen shortly after for a colonoscopy and then a proctogram and transit study which gave a diagnosis of intersussepcion.

However I have a friend who has endometriosis and had to be hospitalised for a month when it affected her bowel and she ended up having to have bowel surgery because of the endometriosis. She had also had a laparoscopy which originally diagnosed the endometriosis.

Good luck.

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I just wanted to give you some words of hope. I had IBS for a good 25 years. I went all round the medical route and was told there was nothing wrong with me. My IBS got so bad at one point I just couldn't see any way out. Then little by little I read an article, tried something different, or had another go at a technique I had already tried, and gradually made headway.

It was hard, but today I have beaten IBS.

As you say, IBS is different for everyone and I don't know your story. One thing that helped me (not a magic wand but a real help) was seeing a Reiki practitioner for a few sessions. Reiki energy helps balance the body physically and emotionally, releasing blockages and tension that can be creating pain. It helped reduce inflammation and gave me a little energy and optimism to plough on. Whatever is causing your pain, you may find Reiki helps to take the edge of it and give you some respite.

You may find something useful to you on my blog SickofIBS.com

Hope this helps,

Alison

2 likes
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Hello Alison, thank you for your response. I have tried some alternative options such as acupuncture, mindfulness meditation, CBT/Talking Therapy/Counselling and unfortunately none have made any impact in helping manage my severe pain & associated symptoms. However I have an open mind and am willing to give anything a try at this point of desperation. Would you happen to known any recommended Reiki experts based in London?

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