Hi
I've been having symptoms of endometriosis for months including bowel endometriosis. Today I had a call with my GP who basically told me to stop worrying, my bloods were OK and that its normal to have period blood in my stools. I told her I was explicitly concerned about endometriosis and she said they'd only put me on contraception I'm on anyway. I feel really deflated. I've waited so long for the call with them to be brushed off. What else can I do?
Hi, this is awful, I'm so sorry! I'm going through a similar experience with, my GP at the minute. You've just got to be persistent and keep calling them; if they continue to dismiss you contact the surgery manager and explain what's happened. It's hard to keep calling and explaining yourself when GPs can be so dismissive, but I found speaking to a female Dr (and keeping with the same person) is helpful. I've also heard that making a diary of when you have pain / bleeds / etc and then showing this to your GP can be really helpful as well. Feel free to message me if you like, hope this helps! x
Thank you very much. I'm on anxiety meds and have been for years and just feel like they think "shes just anxious". I really thought the blood in my stools alone would be enough for them to refer me for further investigations. Really appreciate your reply.
Blood in your stools definitely warrants some investigation! I really hope you get some answers though x
Three thing you should do1 complain. Check how your gp requires complaints to be filled. Who to send it to etc. Be clear when making the complaint what you want to happen
2 look up the nice guidelines for the diagnosising and treatment of endometriosis. To get a good handle on what the next steps are etc (I'd look this up before making the complaint)
3 check to see if anyone else at the gp surgery has an extra training in gynaecology. That's how I managed to get referred in the end.
But I can't stress make a complaint enough. Even if you get the referral from someone else. A complaint can help ensure others don't get told the crap that that Dr told you.
Thank you very much. They told me I could be having irregular periods due to my implant running out. I said its not due for renewal until November, then she said they can run out early. How ridiculous!
Implants and coils can run out /stop being as effective early in those who have underlying conditions like endo.
The time it states it is effective is re having enough hormones in your system to act as a contraceptive. But the levels can drop over time which is why it can stop being effective at controlling symptoms of underlying conditions earlier than the full date.
Ah I see, that makes sense. Thank you
I have to agree with christin, I have the coil fitted, was due out March this year but by October/November last year I was in horrific pain with endo as the hormones had worn off, I’m now 4 weeks post op with a new coil fitted, feeling better although things are still settling.
Hello that is ridiculous, I would change GP and make sure you are heard. Note down all of your symptoms and how you think it relates to you having endometriosis. Keep going until you are listened to. I would say from experience you need to be strong and tell them what you expect treatment wise x
Thank you!
I sympathise immensely with you. I got absolutely nowhere with several GPs and ended up going private. I've now been diagnosed with endometriosis via a laparoscopy but this is just a continuous nightmare with my GP.
My surgeon can't even get a reply from my GP and they haven't contacted me since he started writing to them in January either. He's written to them in January, February and twice in April with updates and no response.
I'm now following up by complaining to the practice manager and my local MP. I suggest you do the same. I'm completely sick of having to explain myself to a receptionist who then decides if I deserve a phone back from the doctor.
I had an extremely painful check of my coil today at the practice by a nurse who acted like she'd never had a patient before and this prompted me to complain in writing.
It's tiring enough being ill but even worse when faced with people who don't want to help or listen....but don't give up!. Keep trying different avenues until you get treatment.
Thank you. Sorry to read about your experience
I have the same thing. I rang my gp who I felt like wasn't overly bothered by what I was telling her. The main point she kept saying was when I lie down it trickles to the back and it could be that. Great!
She has referred me for an ultrasound and to see a gynaecology person but I don't think that will show much.
One thing is to take note of all dates and times and conversations with the GP. It's not fair that you should feel to be made like a victim for something that cant be changed. One of my friends changed surgery's as the GP she was with was horrible. I'm not saying do that as its very drastic. If you are able maybe find a private gp or gynaecology doctor who might answer more of your questions then the gp will.
I hope its sorted for you x
I did wonder about changing surgeries but wonder if the new surgery will think it is because I didn't get answers I want. I know that is sort of the case but I'm hoping through a complaint, ill get that anyway. Hope you are ok
I am ok thank you
Im so sorry that you are going through this and im so angry that this still happens despite all the media attention and celebrities/athletes who have told their own personal (horror) stories. Im so sorry you are in pain and the GP is ignoring this by simply putting you on the pill - similar to what happened to me...I went to A&E in the end. If you attend 2/3 in a short period of time they refer you to a gynae and send a letter to your GP informing them. You must be persistent and as others have said complain to the practice manager ASAP.Good luck x
My pelvic pain has been so bad I have contemplated a and e .
I didnt want to be a burden but eventually my patience gave up in November went A&E then again just before Xmas...and within a month I was seen by gynaecologist 3rd week of Jan...sometimes you have to do what you have to be heard and get help. Im now stage 4 with endo in bowel & now told likely bladder...having op next week for total hysterectomy, with stent fitted to bladder & stoma bag that I pray is temporary...you know your body so do what you need to. X
Really really sorry that this is happening for you and hope it’s temporary x x x
Thank you. I keep crying and don't know why cos I'm actually so fortunate to finally get my op and get well. I blame the hormones 🤪
You’re going through a lot. Tears and emotional overwhelm are natural.
It’s a change. A big big change and feeing anxious is normal.
Hysterectomy in itself is a type of loss that we grieve...the end of an era of reproductive health in our bodies.
Google 5 stages of grief cycle - we go through any stage at any time until it all fades and this is emotional and mental healing. We often just think of physical healing but it’s all areas of our lives, as such.
Awaiting hysterectomy myself too!! Had Mirena out and had a big crash with heavy bleeding and exhaustion.
Here’s a medal 🥇 you deserve it and be super kind to yourself x x x x x x
I hope you get seen soon; your pain gives my horrid flashbacks...can't believe nor understand what it will take for us to be listened All!
I agree its grief and we women go through so much! I don't know what being well...but I look forward to a life now pain free and eat when I want etc.
Any idea when you can get your op? Are you having total or retaining ovaries?
Total and no idea of date but agreed on 30 March according to a letter and so will be pushing the 18 weeks button and writing to PALS to push me up the list at that point, I imagine.
My Gyne has never seen my full notes from 2007 and I asked for a second opinion as my hospital is a BGSE but she is a pain specialist not an Endo specialist. So seeing an actual Endo specialist by request.
Also going to be seeing the acute Gyne ward Matron/Sister with a Consultant to explain why I need a hysterectomy. This is where I got super anxious.
Moronic Gyne did it on the phone whilst I was at work. Covid fail!!
Now I can no longer work atm.
Also asked for CBT because of magnitude of my situation. Got a few weeks to wait even for an assessment!!
It’s all so broken and so wrong but there you go! Life.
I need to stop thinking about it all and get off here and go for a gentle walk X
Walk & relax the mind.I hope things come together & life is kinder to us x
What an experience for you! So awful. Xxxx
I hope your hysterectomy goes well and you recover quickly xxx
❤🙏🥰
That is utter rubbish in my opinion such as it is. My own excellent GP told me specifically that endometriosis is the only thing she knows of that causes cyclical bowel bleeding with periods. The worst thing about trying to get a diagnosis of endometriosis is that all tests are almost always normal so then they just brush you off. Makes me so angry how people get treated. xx
I get they are busy, "snowed under" was their term but how many other conditions are there. It isn't just covid. I don't understand how they still aren't even seeing people. Thanks so much for your reply. I'm annoyed at myself for not being pushier on the phone yesterday but ill start writing up my complaint today
Don't beat yourself up. I've been brushed off on phone so many times over years. They are probably trained in how to brush people off. They are certainly good at it!
Being snowed under is no excuse to treat people badly. If they bother to call you they should act appropriately.
I'd put money on it that you've got endometriosis affecting your bowel. Certainly it warrants appropriate investigation.
Good luck in your fight for treatment. xx
Terrible isn't it. Years if paying tax and national insurance to just be fobbed off! Xxx
Hi BellaGiraffe,
Sorry to hear about this. I had exactly the same issue with my GP - fobbed off with the combo pill and then told I had IBS and anxiety (because I was understandably frustrated with her) !! So it was a male locum GP who referred me to Gynae. I would seek a second opinion.
Yep! Got IBS and anxiety already diagnosed! So frustrating isn't it xxx
Very! The anxiety comes from having to cope with endo symptoms and the battle to get the right referral! Wishing you all the best xxx
Hello, really sad this is happening but you can advocate for yourself. Here is what I’d do. (Had Endo diagnosed in 2007....been pissed about so much by Medics and now I take no prisoners and no shit).
Join your local branch on Endometriosis UK. Mine has regular video calls and you pick up what to do on those calls. You will get lots of love and advice. I searched mine on Facebook, joined and attended a meeting.
Go onto Endometriosis UK website look up helpline opening times and ring up to speak to another woman who truly understands.
You could speak to your Practice Manager and ask to see another GP. Explain to them and say you don’t want to have to go to PALS but you will if this isn’t sorted.
You can look up the NICE guidelines for endometriosis (google it). Ask the GP about it in the new appointment. “What do the NICE guidelines say about possible endometriosis Dr XYZ”.
You could ask your GP to refer to a BSGE centre and a specialist Endo Dr. Google the nearest one before you speak to new GP for second opinion. Ask to be referred to an Endo Dr.
You could contact, as a last resort, the Patient Advice and Liaison Service to complain. Who will look at the resolution of your choice. So know what you want before you set off because they want to resolve the issue.
Hope this helps and I am very tired today and so you have an entire strategy lol with not a lot of compassion.
Let us know how you get on. It’s a tough journey and these are things I wish I’d have known early on.
Every good wish and good vibe X
Thanks so much for your advice xxx
Shouldn’t be a fight but for some reason it is! Please ask to see another gp and request a referral to gynae.
Good luck.
I'm just about to type up my request and send it off. I've spoken to family planning who said they will change my implant - least that will satisfy the GP , show im doing what I'm being asked. Thanks so much for your help xx
Hi there! I'm so sorry to hear about your trouble with the gp and your on going pain without a health care professional to help you during this difficult time.
I agree with the others, definately put in a complaint - the damage and issues may have been already done for yourself, however you never know if complaining will help another person walking in the doors of your gp with similar symptoms.
Check your local area/catchment area for different GPS if you don't mind moving practice, give them a ring and ask if any of the doctors focus in reproductive/gyne health, this is how I found my current doctor who I've been with 3 years now after working through many many many infuriating and bad doctors. The ones who're more clued up and knowledgeable are more likely to push and help you get the help you need. (it shouldn't be like this, but unfortunately in my experience it is.) It's your right to get second/multiple opinions if you need it, this is the same for consultants and surgeons too, it might be handy to remember this down the referral line.
Push that it's not normal to have blood in your stools, this could be an indicator of many things not just endometriosis, and it can be shocking and scary to find, in no way should this be dismissed.
You could also try googling your nearest endometriosis specialist clinic and give them a ring to see if they have any advice or know of any good health care professionals that can help you and point you in the right direction you need.
I hope this helps and I wish you all the luck!
Thank you. I have written to the complaints manager at my practice. Family planning said I can possibly try and get a referral through them but would take longer than GP route. I wouldn't mind that as at least I'd be in the system. Our local hospital as a specialist gynaecology/endo unit so ill ring them. Thank uou!
Hi
I totally sympathise. Docters are poorly educated around this subject and I am really sorry for the issues that you are having.
I have been experiencing terrible right shoulder pain and feel very swollen and bloated under my ribcage and can be very uncomfortable to breathe at times. I sometimes get pelvic and lower back pain. All this happens around my period. I dont seem to get abnormal bleeding however blood in urine whilst on my period.
I have had an ultrasound on my gallbladder and that has come back clear and a pelvic ultrasound which has come back clear. I have tried to get a follow up appointment with the clinic but no appointments now til November. Doctors are saying they cannot re refer. I am thinking of going private.
You are not alone and unfortunately it can be a waiting game until we get that well educated person to help us. xx
Hope you get someone to check you out soon xxx
My daughter is 21, in 2019 she started with IBS symptoms. GP would not look into endometriosis. After 1.5 years suffering, I paid a private doctor to exam her and she finally operated last December. GPs are horrible in diagnosis
OMG I hate this!! Please find another doctor who will listen to you! I am a black woman in America and it was extremely difficult to find a doctor who would even listen to me. Now I have a great doctor who listens to me although I still like to fact check what she tells me which usually checks out. I'm reading a book right now that may help you. It's called The 4-Week Endometriosis Diet Plan by Katie Edmonds. If you have the Amazon Kindle membership, you can read it for free. I told myself yesterday that I wasn't going to have any more surgeries. No more surgeries! I need to figure out how to treat my endo with my doctors help but on my own too. I was in your shoes 10 years ago when I was telling the doctors that there was a problem and no one listened to me. In 2017 I ended up in the hospital with pneumonia in both of my lungs bc the endo got so bad that it grew up into my right lung cavity. I was bleeding in my lungs every time I got my period and I almost died in the hospital... because of my period. Please, please, please don't be like me. If you know something is wrong, then find someone who will listen to you, not that idiot GP that you have now. You got this!
I'm sorry to hear of your experience. Thanks for getting in touch. My complaint and request for 2nd opinion/further investigation has gone off to my complaints manager at my surgery. Ill also ask the family planning nurse about her referring me too.
Ok, sounds great, keep me posted! 😊
Hi. I too had rectal bleeding. By law, the GPs are in the obligation to at least organise a stool test to be tested at a laboratory. You could also request a blood test to check your ferritin levels (they should be at 70, the NHS Guidelines are too low.Any rectal bleeding should be treated as an emergency, endometriosis or not. Research the NICE Guidelines for rectal bleeding. You could print it and give it to them. As they are obviously not listening to you, you could call 111, just explain that you have rectal bleeding. The GPs won't like that you have involved another service, but it means that they will be in the obligation to act upon it, they can;t ignore it anymore.
This is from nhs.uk/conditions/bleeding-...
What happens at the GP appointment
The GP will check what's causing your symptoms.
They might:
check your bottom (rectum) with a gloved finger
ask for a sample of poo for testing
refer you to a specialist for tests
Bowel cancer risk
Bleeding from the bottom is sometimes a sign of bowel cancer.
This is easier to treat if it's found early, so it's important to get it checked.
Common causes of bleeding from the bottom
If you have other symptoms, this might give you an idea of the cause.
Do not self-diagnose – see a GP if you're worried.
Bright red blood on toilet paper, streaks on poo, pink toilet water
Blood in poo or blood with slime
Very dark or black blood or poo
Page last reviewed: 24 April 2020
You could also quote/print them the NICE CKS Guidelines:
Gastrointestinal tract (lower) cancers - recognition and referral ...
Also, What else could it be, a differential diagnosis
cks.nice.org.uk/topics/haem...
Rectal bleeding is automatically an emergency. Just remind them of this.
I would also complain to the Practice Manager with copy to the CQC.
My care was delayed by the local hospital. Luckily enough I had requested a 2nd opinion referral that I finally contacted after months of being referred to the local hospital who cancelled my URGENT appointment 6 months previously. The diagnosis was haemorrhagic colitis (3 holes in the bowels) associated with endometriosis. Endo or not, rectal bleeding is a risk of bowel cancer and the GPs are in the obligation to test you (tool test) and refer you: it should never be ignored. You can tell them that just to remind them of their obligations.
Good luck!x
Thats honestly what I thought, that the rectal bleeding on its own would be enough to warrant an investigation but the GP told me its normal to have period blood in your poo. I did say it wasn't and then she said it was so I just stopped. I should have persisted. I have however complained and have received an acknowledgement back. One of my best friends got diagnosed with terminal bowel cancer via a&e and My GP knows i worry about it a lot - so feel she just thinks I'm a worrier 😒
I am so very sorry to hear about your friend. It is shocking.Call your GP surgery back and quote them the NICE Guidelines and the NHS one that explains that it has to be treated as an emergency,that I have provided you with. Be in charge and demand that they organise an urgent referral (called quick referral:,GPS have that power.
Demand for the stools test to be organised (do it during your periods). Are you under a endo/ BSGE Centre?
No, you are definitely not a worrier: you act more responsibility than they do! I had to take charge of my medical care and the referrals I needed. My husband came with me, their attitude changes completely!x
Not under an Endo centre, no. Thanks, I'll be contacting them again as soon as I have rectal bleeding again when on my period xxx
I would insist on a referral to the hospital, to a specialist centre (bsge endometriosis centre) if you have one nearby. It's important to be firm. Personally if they refuse I'd say, "if this gets worse, you and i will both be in trouble". Don't let them fob you off. You are in charge, not them. Worth looking for a preferred consultant at your local hospital, they can be named on the referral form so you are referred to them specifically.
If you're interested in natural things that work for endometriosis, feel free to send me a private message. I'm happy to share my research with you.
Good luck x
Thank you. I contacted the local specialist unit, only 15mins from my house and discussed my situation. I know their hands are tied as they need a referral but I wanted them to know what it's like for people out in the community xxx
Unexpected endometriosis 
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Endometriosis and work :(
