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tried to post a post before I went to doctors but my tablet not letting me post anything.so have got back from doctors with same result.pelvic xray clear but some hint of arthritis in my hips.told her I have my concerns its OC based on what ive read,heard about and been told-misdiagnosis of IBS,etc. .previous misdiagnosis of IBS,pelvic pain and swelling and ever increasing stomach.poor appetite etc etc.and that I could barely walk fro pelvic pain and abdominal pressure against diaphragm.she said unless/if i get new symptoms she would refer me to a gynaecologist and repeat the ca125,which she has done and have tests on Friday.

as they cant give me any reason for pelvic pain and swelling etc along with other symptoms-they cant rule it out do they think im imagining it all.physical appearance says not,.

given stronger pain killers but what good will they do -they need to find the cause.felt so angry inside felt like saying if you don't believe me then believe my dogs .why are they so concerned.

if anything happens to me and it turns out to be OC I hope someone will sue the NHS.sorry I know I shouldn't think like that but I am just so angry and frustrated that no one is accepting has accepted my symptoms.have been given no other reason for anything and i know my body.

16 Replies

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  • But his one does seem to have listened to you.If she is prepared to retest the CA125 then that's fair enough for now surely? You have had a lot of conditions ruled out and sometimes there just isn't a reason to give for symptoms that are left and we do just have to accept that when tests have been run and showing nothing.Its hard to accept but......

  • hi cupi.you seemed to have stopped mid sentence in your reply.?

    everyone is entitled to their opinion but it has to be accepted that drs aren't always right and need to accept what they are told,

    i may have had SOME things ruled out but it is known that oc is hard to detect and mistaken fro other conditions.there are also several possibilities not even considered.as other members have,its the doctors that picked up on tongue and lips been swollen yet not why.they havent ever accepted my weight gain being all abdo and nothing to do with diet.thing s suddenly got worse in 2011 yet just put down to fibro.

    it s known that OC is difficult to detect and symptoms are very much the same.they cant just dismiss weight gain is abdominal as lost elsewhere and not even considered any other casues ie cushings .my gp didn't acknowledge that it got worse after laparoscopy-more swollen and sore and lumpy has told me repeatedly he doesn't know what things are or "I cant feel anything and its nothing" they cant feel my pain.etc,also there a re other members who have exactly the same experience with their gps.

    feeling nauseous tonight(maybe new meds)scared cos what if it is oc?

    from"target ovarian cancer"-misdiagnosis of IBS-signs of OC are persistent bloating that doesn't go away,recurrent urinary infections,acid reflux,diverticulitis,feeling"full"(poor appetite)feeling the "need to go".abdominal swelling and pain spread to pelvis.

    seeing as all these apply to me -and all ive been told is what things are not and gps dont know what things are -unacceptable as they have seven years training to tell people that-ie not lupus,-unaccounted for recurrent nasal sores,bone growth (acromegaly which gp says she's never heard of).

    its hard to accept anything gp tells me when I haven't had his support and no one has accepted all that ive told them.pain isn't in one s head,it is genuine and there has to be a reason.

  • Have had similar concerns and got GP to run the ovarian cancer blood test which was reassuringly negative. I have found gynaecologists as a whole pretty unhelpful and urologist as well. The best consultants for considering people holistically seem to be rheumatologists and pain consultants - I have had one of the first for ages and just seen the pain consultant recently. I was very reluctant to go to the pain clinic as felt it was because the numerous gynaecologists had just given up and I would just have to be taught how to live with my unexplained pain. That wasn't the case - they actually listen and think about what the issue could be and refer you to other specialities for investigations. If you haven't been through them it could be worth a shot?

  • all my gynae said when I last saw him was "it must be a bowel condition".my rheumy when I last saw him wasn't concerned with rheumatological matters and just kept on about diet and weight loss which weren't his dept and ddint accept what I told him that my weight gain was abdominal or that I didnt eat anything in the way of cakes biscuits puddings etc.since 2011 I have not been given any answers only told what things are not .how can I have faith in any one.thye make comments and tell me I have a swollen tongue and lips btu not why and refuse to accept i cant eat much etc.

    just tried to eat a sandwich and the dogs ended up sharing it because I "felt full"after two bites.

  • hello Elaine,do you know the actual figure of your ca125 test?was it zero or just below range?my lowest was 37-above "normal".never been referred to urologist or oncologist.last scan according to gp was last august -pelvic swelling only been this year spread from abdomen.so could have another scan.pain occurs the minute I am up out of bed -to me confirms pressure on pelvis/bladder??if it was just the pain I could understand it but to have the swelling and for it to be so disabling together with other signs then it is OC?gps have given no reason except misdiagnosis(assumption) of IBS and assuming everything is fibro.cos they have given no other reason ,not accepted weight gain.poor appetite etc.

  • No I don't know the actual score of it - didn't get into that much detail about it, I have so many other blood tests that are not within normal range, it is just nice to get one that is!

  • I agree with cupi and Elaine77. If you are worried that something serious has been missed, I would ask to see a pain specialist and one with an interest in pelvic pain if possible. They should check what has been done in the way of tests, investigations etc and will know if there are any gaps and refer where necessary.

  • it s not only the pelvic pain which is fairly recent its the increase in my "waist" by 7 " and a gain of 2.5 stone.

  • my local hospital is only small -downgraded from A&E to minor injuries and i imagine the nearest hospital with a pain clinic is not easily accessible by public transport .

  • I think that the pain is really getting you down and making it difficult for you to focus and trust any of them - I really think you should ask your GP for a referral to a pain consultant/specialist and as Judy B says it would be good if they have an interest in pelvic pain. They will be aware of any associated symptoms like the weight gain in odd distributions etc. of particular syndromes or conditions, and will be able to get you some proper pain relief so it doesn't feel so overwhelming. I am also sure that there will be ways around the transport issues if there are any - most hospitals will have volunteer services etc. that can help. Hope you feel better soon and get some peace of mind

  • thank you Elaine.it is difficult for me to have faith (not trust)in them because for the last few years they haven't accepted what I tell them.i had no support from my own gp three years ago after he referred me to ENT for recurrent nasal sores and bone growth and all i got told was "it s not your sinuses" and I still have the same problem now.the pelvic pain(and head pain/bone growth) ive had both for two years+ and is only from the time i get up.although I have had ultra sound scans I have never had a diagnosis.its like the scans are "said to be normal"so I don't have any pain.its been the same with any new symptom ie recently lump in my neck.

    if i'll make another appointment to see her and ask for a referral then I will show her the leaflet from target ovarian cancer and posts from other members who have suggested other possible reasons for pelvic pain(no names).

    I might be incorrect in trying to find my own answers and showing them to gp btu people do that its not only me but they haven't considered all/any other possibilities not just for pain but for other visible symptoms.skin rashes went untreated for three years despite recommendations from hospital drs to get a referral to dermatologist .

  • ha s anyone read purple9's post " pelvic pain after laparoscopy",can relate to her post.

    just googled pain clinic s and there is one at my local hospital.

  • Just a thought, not sure of all symptoms of thyroid issues but worth a blood test...

    Hang in there, don't give up!

  • hi Ladydidi

    I havent had thyroid test for long time.my own gp refused to do anymore as my TSH was normal according to him(it was 3.2 at the one and only time he tested for it)..all ive got from them is "I cant feel anything" on the three times I have complained of it,they only feel at the sides of my neck by my ears when the thyroid is at the front(?)and it is at the front where i have the tightness and lumpiness plus the definite lump under my jaw which is pea sized and hard.

    thyroid has been suggested several times by other members but what can I do when my gp refuses to do any more tests and wont accept anything I tell him (them).

    it s been a constant battle for the last 2- 3years to get any kind of diagnosis -fobbed off with it being Fibromyalgia or "it s your stomach" .

    It took at least 2 years to get a referral to a dermatologist despite being told by two A&E doctors on different occasions to get a referral .

    maybe someone should believe my dogs - tho I wont say that to my gp.their behaviour is not a one off but has been persistent for the last couple of years-hating being left and panicky when I do leave them,always nestling as close a sthey can.

  • It's been 18 years now and I am crippled today with progressive neuropathy that started as pelvic pain after hysterectomy -- seen all the gyn doctors - bladder - etc. chronic muscle inflammation no reason found ignored as I was for 20 years with increasing pain from endo which invaded rectum and intestines. I am finished listening to doctors who don't take you seriously but take the money. Pelvic pain is serious chronic problem with many neurological side effects. The next time I volunteer to have a gyn doctor look up there I will probably be dead as I will never again do it voluntarily I have suffered so much abuse. Luckily they didn't leave me much after surgery. Symptoms of OC are similar to chronic pelvic platform pain so test is fine but just because it will be negative does not mean you have no real pain. Just remember that. Good luck.

  • thank you so sorry to hear you have that condition

    .,im having the diabetes test tomorrow cos I missed my appointment on Friday.last time I saw gp she didnt mention blood results and I forgot to ask btu they ve made me an appointment on 27th to see diabetic nurse.i cant recall how many times I have told them I am in pain from the time I get up til the time I go to bed.to me that indicates there is a problem with abdo and pelvis -something causing pressure on both cos im fine as soon as I lie down.

    I wonder how many would sure nhs for neglect if It meant they wouldn't be removed from their doctors lists fro complaining?years ago my gp did everything he could to get a diagnosis now its oh your blood s are normal so you dont have anything wrong.

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