I feel like giving up ,the doctor won't r... - Endometriosis UK

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I feel like giving up ,the doctor won't refer me and says I have anxiety and ibs ...I'm 31 and I know my own body ..advice please

Sarahlou23xx profile image
21 Replies

I'm fed up of my life I really am.

I have bowel problems all month long,constipation then running to the toilet.I need to pass wind every few minutes..the first two days of my period I notice blood in my stool.

I have a stabbing pain in my rectum.

I have skipped heartbeats (up to 70 per day)

I can't get pregnant ..2 1/2 years trying.

I have just got out of the doctors and once again no use,she says ibs and printed me off a fact sheet.Not even a stool sample to check that.

I've had anxiety in the past and everthing is blamed on that,today I have terrible lower back ache and my left thigh is aching,I left the doctors crying my eyes out,I can't cope anymore,I want someone to do something,why won't they listen.

Do I wait a week and go back and say I want to hand a stool sample in and be refered to a gyno,she said today you do not warrant being referred to a gyno.

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Sarahlou23xx profile image
Sarahlou23xx
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21 Replies

I'm so sorry you're having to deal with this. Rectal bleeding is not IBS and should be investigated properly. Have you had any blood tests or scans or is she just saying it's IBS and that's it? FWIW I was told I had IBS by a GP who insisted that I didn't have the symptoms of endo (I asked) and suffice to say he was wrong.

Please ring the surgery and tell them you need to see someone else ASAP and if they ask why, tell them you've got rectal bleeding and fertility problems and the GP has refused to investigate it. I know how horrible it is to have to do this, especially when you're ill, but sometimes we have to kick up a stink to get the treatment we need and GP's are notorious for not knowing enough about endometriosis and missing it as a possible diagnosis.

I hope you get the help you need soon. x.

Sarahlou23xx profile image
Sarahlou23xx in reply to

I had blood tests for full blood count/liver/thyroid/hormones all were OK.

She started talking about my mood and relaxation techniques and anxiety.

I've had no scans or anything,I've asked about chrons and she said as I've lost no weight I don't have that

This is the second doctor at my surgery I've been too...

Luckily my doctors has 11gps so il just go around them all

in reply toSarahlou23xx

It might be worth asking if any of them have a special interest in female health - it was a GP at our surgery with this interest who finally suggested that I might have endo. I also had clear blood tests and this led to the diagnosis of IBS but I was later told by the practice nurse that a diagnosis of IBS means they don't know what's wrong with you. They are also supposed to try and treat the IBS not just leave it at that.

An ultrasound might be a good starting point if you can get them to refer you for one but you need to be aware that they are often normal in women with endo (especially if carried out at general radiology rather than by an endo specialist) and having a normal ultrasound doesn't mean you don't have it or that you don't need further investigations.

Sarahlou23xx profile image
Sarahlou23xx in reply to

She offered me laxatives for when I'm constipated and a course of CBT to help with my negative thoughts about the pain...felt like a slap in the face

in reply toSarahlou23xx

I went to my GP with chronic constipation, passing lots of mucus and sometimes bleeding from the back passage. I had periods that were lasting 7-10 days, frequently having accidents because my bleeding was so heavy, and taking huge doses of painkillers that weren't helping. He did a few blood tests, shrugged off my anaemia, told me the rectal bleeding was haemorrhoids, the period problems were perimenopause (I was 37 at the time), the bowel problems were IBS. He never felt my tummy or examined me. Didn't listen, didn't care. You aren't alone.

poppy75 profile image
poppy75 in reply toSarahlou23xx

I think I'd have given her a slap in the face. I say this but obviously you don't. I feel like I've spent 20 years placating gps, trying to stay calm and nice as pie in the hope of getting them on side and trying not to come across as an anxious hypochondriac.

Definitely call the surgery as suggested above and see if they can suggest a gp who has a particular interest in gynaecology. You shouldn't have to but if need be go to see each and every one of the GPs available. It really takes it out of you and it shouldn't be this way but you have to fight fight fight. I'd suggest you try your hardest to switch the totally understandable feelings of fear, frustration and desperation to anger. It will help you power through and get the proper help you need. Try and imagine you're persevering like it's on behalf of someone you love who clearly has serious symptoms that need investigating. The other option if you can afford it is to book a consultation with a private gynaecologist. It's been years since I saw one privately but others may be able to inform you of current rates. Again we really shouldn't have to do this but it will get things moving.

Do you have someone who can accompany you to appointments? It helps to have someone in your corner when battling this crap. I also have anxiety and have had the experience of gps going on about that when I'm presenting them with very serious physical symptoms. It beggars belief but try not to let it deflate you, get angry and fight!

Regarding the searing rectum pain - I have that and it takes my breathe away, comes out of nowhere and makes me keel over. All I can do is hold onto something and take deep breaths. It's not a massive help but when it persists I take ibuprofen regularly, sit on a hot water bottle or in a hot bath.

Good luck. Keep in touch on here xx

Sarahlou23xx profile image
Sarahlou23xx in reply topoppy75

It's so frustrating honestly.

I still can't believe after mentioning the blood in my stool,she didn't even follow it up,then said it's probably normal.

I'm struggling with lots of gas at the minute and I'm convinced all that gas in my intestines sets my skipped beats off.

I'm feeling ok today (touch wood)my back isn't as painful today.

I'm going to look into private gynaecologist appointments ..one quoted £495 which I can't really afford but il scrimp and save till I can go.

MrsCherry profile image
MrsCherry in reply toSarahlou23xx

£495 sounds quite high unless it includes a procedure as well such as an MRI. I just had a private consultation with a BSGE registered endo and oncology specialist. The cost was £250 and that included a thorough examination and about 45 minutes of consultation. Have a look on the BSGE site (sorry, you probably already know this): bsge.org.uk/centre/

I, too, have spent more than 20 years of GPs and general gynos shrugging off blood in my stool during my period. It's outrageous. Good luck. xx

Private70 profile image
Private70 in reply toSarahlou23xx

Coloscopy may be needed

Lovisa profile image
Lovisa

Find a new GP if possible or if you can, pay for a consultation with a gyno and then IF they suggest anything you can be put on the NHS waiting list. I also have bowel bleeds two days into a periods and I have stage 4 endo.. Bowel endo is something you need to get seen for.

Sarahlou23xx profile image
Sarahlou23xx in reply toLovisa

I told her the blood was actually all the way through my stool but was dismissed.

The back pain is horrible ..and the sharp rectum pain is bad,when I get that I can't move.

I honestly know it's not ibs ..my mum had endo too,and my Aunty ..I don't know if it's genetic

in reply toSarahlou23xx

There is a lot of evidence to show that it runs in families. Please ring your surgery as soon as you can. x.

chezzle01 profile image
chezzle01

Stick to your guns hun. Keep going until they refer you its not right to just be left. They tried it with me but as long as you are persistent and say the same thing they will refer if not change surgery or Dr xxx

Heloo85 profile image
Heloo85

If you think its gynae related then moan about gynae problems first and foremost. You have terrible fatigue, lower cramps, long periods. But in saying that might not be gynae related .. Blood in stools warrents a referral to a colon guy at least. Keep going back. Dont get mad or upset cuz they have a right to kick you off their books. Dont demand anything. Just keep going on about how much pain youre in and your symptoms. Good luck

Lou7707 profile image
Lou7707

Hi SarahLou

I'm sorry to hear all this.

If you need someone to talk to, we do have a network of support that available to women with endometriosis. Our free helpline 0808 808 2227 is run by volunteers who have experience of endometriosis. The helpline is open most days – the times it is open can be viewed here: endometriosis-uk.org/suppor...

Louise

Endometriosis UK

Private70 profile image
Private70

Sounds familiar get a referral to a GI digestive doc since she tends to say it's IBS just tell them colon cancer in family's history. I feel u this is invisible to them but we know are bodies and it's exhausting coping with this chronic pain in my prayers

ivy23 profile image
ivy23

I am sorry you are suffering so much and I do know how you feel. The blood in the stools does need looking into . As for the rest of the symptoms try googling Maryon Stewart , that lady made a huge difference to my life. It may not work for everyone but you have nothing to lose . X

Akxo profile image
Akxo

Hi i have had similar issues. I would suggest changing doctor if possible. I suffer from depression and anxiety. Ive had cbt and counselling for this but days i still struggle. Ive had the whole its in your head. The pain your have is in your head etc. Its only been over the past year i got talen seriously as my CA125 level was the only thing to come back raised as other blood tests stool samples came back fine. I have rectal bledding frequently. I got reffered to a gastrology was a long way so i paid private for a counseltation and that helped doctors taken me more serious aswell. It shouldnt be the case you have to do this for someone to listen but i had enough. Was the exact same as yourself.. running to the toilet, constipated. I had constant nausea, no engery, couldnt leave the house weeks at a time and chronic pain in pelvis. I had a mei and colonoscopy which came back normal so have said its severe IBS. The medicarion that helped myself is ompemrozole, alvrine citrate for IBS/stomach. I suffer from endo too.

Hope you get it all sorted out x

MrsCherry profile image
MrsCherry in reply toAkxo

How people in chronic pain, who have been told for years that symptoms are all in their heads, are expected NOT to got berserk, I don't know. Why on earth wouldn't you be anxious, upset, etc? It's utterly ridiculous that people who are suffering, ignored for years, and at the end of their emotional tethers are expected to perform calmness in order for doctors to take them seriously.

Akxo profile image
Akxo in reply toMrsCherry

Anoh its terrible when you get told your basically just at ot is what they think. They take me serious now though. I hope your much better now

Mariec7 profile image
Mariec7

I haven't read the other replies yet. I feel so upset after reading your post. You need a second opinion ASAP. Don't wait. Are you in a position to see someone privately? I was fobbed off for 10 years and I am in a messed up situation now. I have stabbing pains in my rectum and have been diagnosed privately through and MRI (£400) as having adenomyosis on my colon Dec 2016. Open surgery confirmed stage 4 endo, fibroids, blocked FTs and ovarian choc cysts. I was humiliated by some GPs for years. You are in pain. See a different GP or my strong advise would be to see someone privately. Not sure whether you should see a Gynaecologist or a gastroenterologist. Good luck xx

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