Should I push my GP?: Hi everyone, I have... - Endometriosis UK

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Should I push my GP?

Grace90 profile image
15 Replies

Hi everyone, I have several symptoms which all seem to point to Endometriosis. For the last year (possibly longer) I've been going to the doc asking for answers but every time I have been fobbed off. They have told me that they suspect I have ibs. The food I eat does not affect my symptoms at all so I think this is complete rubbish! In summer I had period pain so bad - for some reason the pain increased 5 times over at night time each evening - that I went to the doc and refused to leave until they referred me for a pelvic ultrasound. The ultrasound was inconclusive. At the time I was not dating anyone - for the first time in almost a year I am now dating someone and I am in a lot of pain during sex - like a deep, burning pain.

I also bleed during a bowel movement and have a lot of discomfort during a bowel movement too. Sometimes I can not even pass a stool - only a blood-or white-coloured mucus. Sorry if this is too much information! During my period however the blood in my stool is so much heavier. The doctor told me that my period would not affect the amount of blood in my stool - but I'm the one experiencing it so I know it does!!

Apart from that one time in summer my periods have not been too painful - actually they've been surprisingly light since then however every now and then during my period when I urinate I pass a clear substance - I think I've read somewhere that this could be a lining?

So sorry for super long message but I just want to know if these are symptoms you've all experienced? Should I push my GP for a laparoscopy?

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Grace90 profile image
Grace90
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15 Replies
caroline81 profile image
caroline81

Push push push your GP to send you to a gynae doctor!!! I've had these problems from i was 14! I'm now coming 35! And diagnosed with endo 8/9 years ago..you know your body! If there is another gp at your surgery go see them..I found that if wrote everything down Ilike a diary of everything I was suffering..like you.. painful periods..clots even when I got out of Bath the cc lots would be running down my leg .painful sex..blood in my stool..only a few months ago I was bleeding both ends..and I made sure I had dates written down..and tell them this is your body and your life being messed with..keep pushing because If you don't look after yourself no one will! Sending you hugs and if you need to chat here anytime..x

JaneG79 profile image
JaneG79

You need to see a GYN (gynochologist) as GP's can't really help. The bleeding from bowl also needs to be looked at seperatly. I have both Endo and IBS so you need to get them both checked.

I've had problems for years and only diagnosed after they mistakenly diagnosed and put me on medication for Crohn's disease. No one will fight for you unless you do. Best of luck with everything.

Nicolahunny profile image
Nicolahunny

I had to push my doctor for a year and a half I used to have such severe damage pelvic pain when on my periods I used to be rolling on the bathroom floor in agony it got that bad I ended up in hospital and gynaecology agreed to do a scan only cause I had to push for one I had a 2cm cyst on my right ovary but didn't feel that was causing my pain but the pain continued I was so desperate for answers but all I got was oh it just period pain at that point my husband told them straight and I ended up being discharged I then had my outpatient appointment in October 2014 and they agreed to do a lap I felt like I was being listened to and had my lap in Jan 2015 and found that my pouch of Douglas had attached itself to my womb plus a small amount of endo was found but if I were u don't give up till you are refered to gynaecology I had to see nearly every doctor in my practice till I was taking seriously but please push I wish you the best of luck xxx

Smoff profile image
Smoff

If you are passing blood in your stool they should have referred you anyway!!! Ask them to refer you and if they don't then put in a complaint. You are entitled to complete care and if your doctor is not giving it to you then they are not doing their job.

Alternatively go to accident and emergency. Your symptoms need looking at!!

Brcu profile image
Brcu

Good morning,

The food you eat has a direct impact on your period pains and constipation. I was having very similar problems and am now on gluten free diet plus significantly reduced dairy, sugar, red meat, soya products ( i only consume organic milk and red meat rarely ). Pls read amazon.co.uk/Endometriosis-... . It will help! You can also see the author Dian who works in central London. She charges £125 for an hour( all info available online) . I had constipation, period pains ( even had an ambulance last year as collapsed at Old Street Station from pain ) , very dry skin ( spent too much money on good facial creams) , bloated all the time too much for a size 6 person! Read the book and commit for 1 week diet. You will see the difference, promise. Then you can see Dian who can advise you the supplements and vitamins you should take. Hope this helps 😚😚

NW248 profile image
NW248 in reply to Brcu

You seem to have decided she has a food intolerance with no evidence of that whatsoever, she's said the type of food doesn't affect her. It is much more likely that she has endometriosis and that needs to be investigated.

Brcu profile image
Brcu in reply to NW248

Let her to reply to me. I am trying to help here. I was told so many times by doctors that food has no relation to my symptoms. I tried that diet and it worked. Don't come to me saying what I should say here! I did not say her that don't go to doctor. Try 1 week to cut those food and see the difference. That's it.

NW248 profile image
NW248

I got fobbed off by GP's for years, I also got fobbed off by 4 gynaecologists, another missed the symptoms after I'd had a lap for a burst cyst. The most recent one failed to diagnose me last summer even with all the symptoms of endometriosis.

You need to see one on this list bsge.org.uk/ec-BSGE-accredi... they are the ones who can diagnose and treat recto-vaginal endometriosis, which is where the cells accumulate between the rectum and vagina, which sounds likely in your case. Because this area is difficult to get at and the cells often stick surrounding tissues together it can be missed in a lap. It can be found by an MRI however. You have a right to see a specialist and it is NHS policy that it should be one on this list. So just insist! Even when I asked my GP for a referral when I was paying to see a specialist privately my nurse practitioner who was writing the referral tried to persuade me not to see him, saying it could be a waste of money and I should continue with the ones they'd been referring me to.

Starstellar7 profile image
Starstellar7

Yes and you must get treated. I was fobbed off in the UK with mild syptoms and it took moving overseas and the disease getting worse for it to be diagnosed.

You need a proper specialist, not just a gynae. Someone who is a specialist in this area. I had to have an op and feel a lot better now.

Good luck x

applebird profile image
applebird

Ok firstly it's really concerning that your gp hasn't referred you to a gastroenterologist when you have blood in your stool. Bleeding from the bowel can be a sign that endo has infiltrated the bowel, but can also indicate crohns and other inflammatory bowel disorders, even cancer. I agree with the poster above that you need to see separate gastro and gynae specialists at this stage or even go to a&e the next time it happens - if it is bright red blood it could simply be from piles from straining with constipation, if there is a lot of blood or particularly if it is darker it indicates the bleed is from deeper in the bowel. You should really change gp pronto - I'm sure there will be others in your practice that are approachable.

endo-resolved.com/diagnosis...

Focus on the pain with bowel movements and sex, heavy bleeding and bleeding with bowel movements when discussing your symptoms. Start keeping a daily symptoms diary - record whether you're bleeding, whether it's light/heavy/clotty etc, level of pain 1-10, where pain is concentrated I.e. With bowel movement/lower pelvis etc. Also record any other symptoms and things going on, even if you have a cold! Also if you start something like the endo diet or acupuncture or a new medication take note of when you start it so you can judge whether or not it's made a difference.

Get a referral to an endo specialist at an endo centre

bsge.org.uk/ec-BSGE-accredi...

Good luck x

Kaysha40 profile image
Kaysha40

Hi

I really understand your frustration, I was going back and forth for 30 years before I was given a lap. Yes you can have bleeding from your rectum through endo I do too. And the research says you can. Find any info you can and print it off and take to the doctor. Change doctor if you have too. Don't do what I did I lost my babies had years of infertility years of pain just to be fobbed of. They made me feel like I was crazy. Unfortunately you have to be firm. Ibs does not cause painful sex...... be strong and don't give up we only get one life I'm having my second lap on the 7 th of Jan to cut away endo. Endo they told me was just normal periods. Be strong do research en power yourself because the doctors are not always right xx

Grace90 profile image
Grace90

Hi everyone, thanks so much for all the replies and advice. I should have said that during the last year I was referred to a gastroenterologist and had a sigmoidoscopy to rule out conditions such as Crohn's disease. Nothing was found so the doctor said "it's probably ibs" and sent me on my way. I've done all the diets linked to ibs - cutting out certain food types etc - and nothing affected my symptoms. And I have no allergies either. Reading what everyone has said it certainly seems like I do have a form of endo so I think I'll go back to the doctor and put my foot down. i hate the idea of diagnosing myself on google but everything points to this - all I have to do is type "blood in stool, worse during period" and the whole page fills up with websites related to endo. So I think I've got to stand my ground on this.

Thanks for your help - The doctors were starting to make me feel like a hypochondriac but I think I've got to go back and tell them that I know what I'm experiencing and they'll have to investigate further.

Thanks again x

caroline81 profile image
caroline81 in reply to Grace90

Definitely push them! It's hard but do not let them fob your off I did for years and I've had one failed marriage and now in two months im having a full hysterectomy as my insides are so bad..It's taken me so long to get to this point and I wdnt wish it on anyone ..sending you hugs x

Ruby5 profile image
Ruby5

Push your GP!!! My GP fobbed me off too and said it was really unlikely, and the gynae that I saw did as well, asking me if I really thought a laparoscopy was necessary. I've recently had the laparoscopy and been diagnosed with endo. We know our own bodies better than doctors do, no matter how experienced they are! Good luck xx

Anjalee5 profile image
Anjalee5

Hi,

I don't normally reply to posts but yours flashed up on my email and it was like I'm reading a post I'd written! I have all the symptoms you described, including the icky ones that we never wish to talk about. I'm having surgery next week to fix a type of prolapse but my surgeon has made it clear it will only fix 1 part of about 6 digestive problems I'm dealing with. Over 7 years I've been through every test they've got, taken a ton of laxative type drugs that are practically experimental, used irrigation system to go to the toilet, lost 2 fallopian tubes to adhesions and been told I had crohns/ulcerative colitis even possibly cancer, only to be dropped with the "oh it's just IBS" line. I gave up twice and had to start all over with tests, all because I didn't want to make a fuss and that lost me my fertility.

I've been in Zoladex injections for 4 months to see if that helped and it did for a while but the Gynae Dr wanted to give me 5 months more on HRT and without any investigation whatsoever, so I decided to go back to my GP (who also thought it was a bad idea) and after surgery is done, I'm getting referred to London.

I've left it too long and I paid the price, this may not be the case for yourself or anyone else but I urge anyone who is concerned about themselves to fight for their care, the poor Doctors hardly have enough time to have a tea break and won't be able to champion each patient's cause, unless they persist with asking.

I would love to know how you get on, good luck.

A x

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