I have been suffering from pelvic/lower abdominal pain for over 4 years now, and no cause has been found with scans or any form of blood tests. I honestly have had so many investigations involving xrays etc that i must glow green. But they all come back negative.
I have been labelled as having a psychosomatic issue with pain, but i know in myself something is wrong with my body, I am so worn down with this pain i can barely play with my 8month old daughter or do things i used to do before this pain began.
Since the start not only have i had the scans and blood tests etc but i have been given every pain killer upto tramadol.. and have been on these for over 2 years. Everytime i ask my gp for areferral he keeps putting me on a new painkiller and saying "we'll see how it goes with these first" or he'll make up an excuse like "i don't think its anything too serious". If i am in agony and can barely give my daughter the playtime/attention and care she needs then what sort of parent am i and how is that serious. If it weren't for my partner i swear i would not be a good mother, he has supported me through everything and does what i cant do with my daughter. But it makes me soo upset to see him doing things i should be able to do... I'm just wanting a referral to a gynaecologist not a letter to NASA saying i can go into space. What is soo hard to send me to a consultant in the field of gynaecology for a laparoscopy or an more invasive kind of scan that will be less harmful to my liver or body than taking all these pain meds?
I'mhonestly at the end of my rope here,i just wish GPs would listen to me or help instead of handing me a different painkiller each time instead of helping solve the problem.
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Omorose
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I think a lot of it is due to the fact that GPs are targeted on the amount of consultant referrals they make. The other thing is that they literally spend an afternoon at med school learning the basics about endo. It's no surprise that it takes an average of 9 years for women to get endo diagnosed!
For me the thing that seemed to "tip it" was that I missed over 25% of the year off work and was genuinely worried that I would lose my job - work even sent me to a GP to check my story out! I went to my GP after and requested a referral, or the details of how I would make a self-referral (which can be done on the NHS, but isn't publicised or easy!). I also presented them with a detailed (but simple and clear) symptom diary. I literally coloured the days ithe calendar pages of my diary where I bled (which was a lot and very irregular), and used letters/symbols to indicate when I was off ill, and when I needed to take more than 2 paracetomal to control pain. I also wrote a long list of every symptom I experienced and how it affected my life.
Once i got a referal i didn't wait long until I saw the consultant (through the choose and book system I chose the hospital with the shortest waiting list, that was a private hospital, bit the NHS pay for it), and at the first appointment he booked me in for a lap a few months later - he couldn't believe I had never seen a consultant before!
One thing that might help is showing your GP the treatment pathway on the NHS website, and also look at the Royal College of Obstetrics and Gynaecology recommendations for endo investigations.
Hi, i dont suppose you are able to post the web links to these two websites ?? I dont live in the UK any longer, and although i find GP's and Dr's generally good in the UAE, they all seem to say... i need to find my own surgeon to operate.... they cant decide if i need surgery see another dr...
Would be very useful for me to have this information to hand.
Hi huni it took doctors 6 yrs to refer me its ridiculous they defiantly need more education there they kept blaming it on my weight and didn't believe me because I had obsessive compulsive disorder but wen I eventualy saw gynae he said he wanted me to lose weight and come back in 6 months I actually wept all the way home never cried so much in my life but lost a stone in 6 months which was a challenge because the drugs i was on had weight gain and i was on 3 weight gain tablets anyway it took the gynae another year after that to arrange a laproscopy then bout 7 months for the op I have a lil boy well he's not so lil now he's 9 and all he's known is mummy ill last summer he said was the best of his life as I was pain free for the whole summer holidays so we did everything that I couldn't do before but by september I was back at the beginning again with the pain and bleeding and went on zoladax injection for 3 months was fantastic for me but u can only have it for 3 months and now I'm laying here in pain again and just had coil fitted hope u get ur answers soon for u and for ur family and hope ur painful journey finishes after first treatment if u ever need to chat I'm here xx
i take it you suspect endo? which of course would not show up on any scans.
tell your GP this and that your sister, cousins etc also have it. a familial link may tip the balance for you.
docs make referrals based upon need - you may not fit the criteria yet.
my best friend diagnosed me before any gp. I do wonder if they aren't keen to diagnose as there is very little they can do; once diagnosed pain relief is really all they offer.
your age will also be a factor for referral - i think that young women have terrible time getting a diagnosis. my niece still hasn't despite terrible symptoms, her mum, auntie and cousins having it. she's 23 and been suffering since 13.
keep pushing. good luck
I am so sorry to hear of your pain & frustration ! but its all normal for us endo sufferers !!
my advice to you would be firstly see a different doctor !
secondly, this is unorthodox but i had to do it !! i just went to a&e and told them that i couldnt cope with pain any longer & they transferred me up to the ward & 2 days later give me a lap !!
its shameful what we have to do to get listened to & to get treatment
So with all the pain you have not been referred for a laparoscopy? I've learned that you have to make a fuss to be taken seriously. I would see another Doctor. Insist on getting referred to a specialist and ask for a laparoscopy to find out whats really going on. Good luck.
Funny you should say this. I went to a GP (not my usual one at the practice) just last week because after quite a long period of remission my endo symptoms are getting very bad again. The GP was hoping to keep me quiet with the 'let's try some drugs approach' but I wasn't having it. I politely explained that I could feel that things had changed and I felt it was time for examination by a consultant. I also made the point that the drugs made me feel terrible without doing that much for the pain. She gave me a prescription anyway...but also a letter to book a hospital appointment. Amazingly when I called up I got an appointment in just two weeks time. I decided to take the 'Expert Patient' approach (which we all are!) and push the fact that I know my own body. Fortunately the GP reluctantly let me have my way.
I agree with doing the A&E approach. Several times I have been out of the house and have collapsed / fainted from the pain so A&E is a necessity and then get admitted on to the ward. It is much quicker to see a consultant that way. They always send me home with masses of pain meds and the consultant has put me on prostap which is helping loads.
Thank you everyone for your lovely words and advice. I really can't thank you all for your suggestions.
I have tried the A&E approach a few times but they seem to think am faking it (because i was literally screaming in pain cos i had made sure i hadn't taken any pain meds or anything that might help so they could see how bad it was. Unfortunately.... They sent me packing and said that i was a hypochondriac and probably "looking for a next fix of pain meds" which was and is not the story at all. But i will definately take all this advice and lovely words on board and keep fighting
My ex GP was very reluctant to refer me to a consultant. She said that even if it was endo they would only treat it with the mirena coil so it was easier for her to fit one anyway. This wasn't really helping with the bad pain I was in so I cried in a consultation with her and asked again to see a specialist in case it was something really serious. I told her I felt uncomfortable with her treating me for something that had not been diagnosed. She just told me that I had not suffered long enough for a referral!! I ended up paying for a private lap which I couldn't really afford but was worried sick by that point. He said he would then treat me at his NHS practise but my GP refused to refer me to him as I had "gone behind her back" (her exact words) Needless to say she is now my ex GP and I am in the process of making a formal complaint against my treatment by her. I am not usually the type of person to make complaints but I was disgusted at how I was treated. I have to say my new GP is much better, however when I was finally referred and went to see a different NHS consultant, they were not much more supportive at the hospital and discharged me after one consultation after refering me back to GP with list of drugs that I could try!
It gets so tiring just trying to get people to take you seriously.
Oh I'm sorry to read of all these problems that seem to happen to us all, Pychomatic pains!!!!!! When the doc in A& e said this to me I cried so much because they were always assuming that I the pain was not not a physical pain despite me being unable to walk in aided!! I CHANGED my GP and CHANGED the A&e hospital I went to, made a formal complaint.
With the new docs when I explained what has been going on I made it CLEAR I have a ongoing formal complaint because they are not taking me serious!
And then I started having doctors blushing in embarrassment and bending over backwards to get me urgent referrals effective pain killers, physio, gynae, neurology, pain clinic! After years of going to my old GP who in the end I lost my rag with and acted like the " mental patient" he kept fobbing me off as!
They are a complete headache, I have learnt how to get what what I want and need now, and do not take non of the " that's expensive drug" or " go speak to your GP" it's not my fault I need expensive drugs or that my GP will not listen to me. I'm not in A& E because I like sitting in uncomfortable chairs crying my eyes out for hours to be fobbed off! No way.
The GP does not like spending money. And they do not like chronic sick patients, and they are GENERAL PRACTIONERS and know too much about colds, flu, sprains, constipation that anything BUT gynae related.
We should not need to demand a referral but it seems many of us have to!
When will this change, how many more women will suffer at from bad case management? It's just sad.
Sorry about my rant, I can relate thou Hun, stay strong x
Hearing what you've said and everyones experience (i really feel for everyone) maybe we should all write some sort of petition to the health minister demanding better treatment for people with endometriois? Or something along those lines, it really is frustrating when i read other peoples experiences good or bad but still hearing it takes years to get anyone to believe us or even humour our requests for referrals or stronger pain relief. I wanna serious get these doctors backsides kicked into gear! x
this is twofold for me because I have endo myself and come across women who have it through my work and i can confirm that ivf clinics are full of women who have endo which was undiagnosed for years. it is not as the media would have you believe that "career women" are delaying motherhood.
I urge everyone to consider diet, nutrition, exercize and acupuncture/reflexology alongside western medical treatment. surgery and meds only treat the symptom whereas a more natural apporach gets to the cause.
I was the same...always fobbed off with painkillers to the point i ended up with stomach issues from taking them.
you need a detailed scan with sonographer who knows what to look for and i recommend UCLH endometriosis centre in london. I had a scan there and for the first time they were able to tell me what was going on. regular scanning machines do not pick up everyting.
i do recommend that in the meantime to avoid painkillers: buy a dreamland thermo heat pad (from argos or boots) this is an essential
look into having some regular acupuncture (and chinese herbs too) ....this can help hugely to regulate things....
but above all you need a good scan,
let me know if you have more questions....please don't be fobbed off any ,longer.
the scan showed nothing but the original consultant i saw who believed it was endometriosis said "don't worry if it shows nothing as scans can have errors, or the endometriosis can be hard to find and often microscopic"
the next consultant said i was "unlikely" endometriosis even though one of her collegues had given me the diagnosis of endometriosis.
I'm based in Edinburgh and on benefits due to the fact i can't work due to the pain and various mental health issues which the pain is causing me (depression and anxiety).
I had the exact same problem for 10 years and it was solved by telling my GP I would sue them for neglect unless they referred me to a specialist, I was diagnosed 4 weeks later!!! Don't take their crap. X
I completely understand how you feel because I have been through the same with just put on a higher dose then a stronger one I went from diclofenac to tramadol (12hr moderate release ones) to now having both of them with morphine (12hr ones) & liquid morphine top up for the pain I am in & I always felt like the doctor was practically pushing me out the door with more pain relief & ignoring what I was saying. in the end I had to search online to look for conditions that could be causing my pain as the doctors weren't looking into it & that's how I found out about endo, I went to my gp & asked to be tested for it as the symptoms were all the same as mine.
Please don't give up fighting because you will get there I knew something was wrong with me but x-rays etc didn't show anything but you know when something isn't right inside you I had 3 yrs of fighting with my gp to be reffered before I finally got there & I had a laporoscopy to check for endo & then I had a total hysterectomy 6 months after (they found adenmyosis inside the uterus walls & cancer cells spread from cervical area which wouldn't have happened if the gp had reffered me initially when asked) since then I've also had to have my ovaries removed due to large ovarian cysts which has removed some of my pain but now I'm just having tests for m/s & fibromyalgia as my new gp (the good one) thinks I might have nerve damage as I am still in pain but at least the other stuff has been sorted now.
In the end my pain was that bad that after begging to be reffered to a Gyno & getting no where I sat there in tears & refused to leave until I was reffered to a specialist as I no longer had a life anymore as I was in too much pain to play with my two young children & apparently if "your quality of life" is affected so badly they then have to do something more. I was advised by an a&e doctor to tell my gp that "I no longer had a quality of life" because of all the pain I was in & the way the pain meds made me so ill (both tramadol & morphine have horrible side effects) & it worked although I ended moving doctors because sometimes you need someone new to look at you & they tend to see things the other one didn't because they're more willing to listen. Just don't give up as if you feel like something is wrong then it probably is & just because you don't have a medical degree doesn't mean that you don't know what your talking about when it comes to your own body. They need to refer you for a laporoscopy to rule out endo as that is the only way to truly diagnose it or rule it out, just remember to be strong stand up for yourself & tell them it's your body & you want to have the test because some Gyno's will try to talk you out of having it but you need it to move on & hopefully get a diagnosis. Just be completely honest about the pain & how your feeling & if you cry then so what it just shows how bad it really is.
Sorry for the long post I just hate the idea of someone else suffering like I did just because the doctor isn't listening.
Good luck with everything & I hope you get better soon x
I went to a&e initially as I was in so much pain. They kept me in for four days and was seen by the Gynae doctor. She kept me under them and I was discharged awaiting a laparoscopy that I have since had. My doctor has been very supportive luckily but I don't think I would have been if I hadn't taken myself to hospital in the first place
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Endo to end all Endo!!!
I have no clue what to do next, I have endo but specialist centre says it isn't causing my chronic pain and they don't know what is.
When do you get pain?
Painkiller Headache
