Endometriosis UK

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Need urgent advice

Happygirl2002•

Hi ladies,

I am 23 years old female who has pcos. However i have been bleeding since 27th september 2020 quite hevey and clots sorry for tmi. Its not stopping and the pain in my pelvis area and abdomin pain is becoming unbearable and i have been crying most days in pain and not able to cope anymore.

I spoke to my doctor yesterday, i suggested to her that i would like to be refered to gyne as i cant take the pain i have tried paracetmol and metnamic acid and transmaic acid nothing is working and strong buscapan. The doctor refused on the grounds i look fine and i cant have children anyways so it wouldnt benifit me.

Is there any other routes or suggestions i could do for pain as its effecting my life and now i have been fainting.

I dont know where to go when i am in this much pain.

Plus all the symptoms of endometriosis i have and the doctors still wont allow specialist help

71 Replies

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Gosh, that is brutally inappropriate and insensitive to say you can't be referred for consideration of endo because you look OK and can't have children anyway. Does she mean because you have PCOS?

Have you ever been referred for PCOS as it can be treated and you can't be branded as infertile because of it.

Likewise endo can be treated of course and the two reasons for treatment, especially surgical, are for pain and/or infertility. Have you actually tried for a baby and been unsuccessful?

Your GP sound awful and sounds like a prime example in action as to why there are such long diagnostic delays. There is a clear treatment pathway for suspected endo that begins with a list of symptoms in the NICE guideline. If you have just one of the following symptoms then you should be suspected of having endo:

1.3 Endometriosis symptoms and signs

1.3.1 Suspect endometriosis in women (including young women aged 17 and under)

presenting with 1 or more of the following symptoms or signs:

• chronic pelvic pain

• period-related pain (dysmenorrhoea) affecting daily activities and quality of life

• deep pain during or after sexual intercourse

• period-related or cyclical gastrointestinal symptoms, in particular, painful bowel

movements

• period-related or cyclical urinary symptoms, in particular, blood in the urine or pain

passing urine

• infertility in association with 1 or more of the above.

This list is actually quite limited as other symptoms are well recognised as suggesting endo such as fatigue, bloating (in association with the bowel symptoms included above that are all often written off as unconnected IBS) and pain referred to the lower back and often the bottom and legs, most commonly the left. The first chapter of the ESHRE guidelines gives a detailed description of typical endo symptoms doctors should look for.

I should see another GP and take a copy of the NICE guideline and highlight the symptoms that apply. Please feel free to pm me if you would like any more guidance as to how to get to appropriate care.

NICE guideline:

nice.org.uk/guidance/ng73/r...

ESHRE guideline (full version link on the right) :

eshre.eu/Guidelines-and-Leg...

Im crying my eyes out in pain, i dont know what to do i asked for gyne referal due to the huge pain i am in, she doesnt want to help.

I dont know what to do anymore no health service wants to help 😥😥😥

Please get a second opinion or change doctors PERIOD! You can always get a second opinion ,not every doctor is right. I feel for you cause for the last year I have been getting unbearably sick before my period and during. With now it getting g worse ,hot flashes, feeling so weak ,I can't do anything , no appetite ,head feeling weird ,and just pain on my stomach when I use the bathroom, and new one my whole stomach hurts so bad gas,cramping ,feeling like I can't breath ,constipation. I felt this before ,and been yo a gastrointestinal doctor and I was diagnosed with SIBO , and a kidney stone ,and gyn,said I have a cyst on my ovaries....but its fine! So after taking my antibiotics for the SIBO, here I am again a month later during my period sick as a dog again with the same feeling as what took me to the doctors in the first place . My gyn suspected possible endometriosis " which runs in my family,(mother,& Sister) but she said I was missing just one component, so it was ruled out. Sorry for bambling on ,on your comment ,but I just am saying to you that I'm gonna get a second opinion and u should to. Im new to this and right now I am so sick I am just learning about this right now.

Could I ask what component the gynae said you were missing? That sounds just as insensitive. As far as I’m aware this condition has no strict guidelines as such, especially if it runs in your family. Symptoms vary across the board.

Yes but the NICE guidelines are strict and tell doctors what symptoms they should refer to.

I understand that when your bursting into tears and cant cope with the pain and taking lots of pain killers and nothing working im begging for help

Hi Lindle, I was on about the symptoms and being told that there was a lack of one, not the NICE guidelines, although I appreciate what’s there, but guidelines aren’t rules, the local CCG guidelines are the same, a doctor can go against these if the medical/condition seems otherwise. Both organisations will only say they are guidelines. I went through this with someone else and a different condition. I did get the GP to prescribe something that was not part of the guidelines.

Hi, that was an awful consultation, so sorry you had to experience this.

If it wasn’t your registered GP make another appointment. If you use the econsult form on their website it gives more opportunities to write down symptoms etc., cram as much info as you can. There is usually a form for a referral. Add in a couple of links from the endo UK site re referrals

When you have the appointment try to have someone with you as support and the phone on speaker. This should mean you won’t get any awful comments again. You have a right to a referral to a specialist if the GP can’t help. I got told earlier this year they couldn’t help much in primary care.

Good luck, let us know what you decide to do 🙂

You could skip GP and go to A&E, but if you can get a referral it’ll go better in the long run.

If you can afford it, a private consultation can work well and they can put you on their NHS list if they chose to. This also gives you an initial choice of consultant and a specialist. Maybe an early Christmas present.

I have been thinking about a&e as i cant bare the pain but we been told we are not allowed to turn up to a&e and to ring 111 for advice then if we need a&e to send me to a&e that might be futher away depending on covid. I am crying in pain and have stopped eatting i dont know what to do anymore

Plus i really dont have the money for private healthcare

I’d call 111, you shouldn’t have to be in so much pain. A few months back I went to A&E during the week. I had already arranged a GP call back, but then cancelled and told them what I was doing. I saw the pain nurse and she gave me Tramadol and knew about endo, saying it wasn’t in my head, first time ever. She did also contact GP to do a referral to the clinic, but that’s a whole different story.

Unfortunately you have to be an advocate for you with this. You know how you feel and no dr should underestimate this.

Let us know how you get on, you can do it 🙂

I have spoken to emergecy gyne and they said wont see me as its GP issue so im just stuck 💔

Did you go through 111 to speak with them?

I didnt speak to 111, at our hospital we have emergency gyne unit we can ring but she said they wouldnt do much just give me stronger pain killers and letter to the GP to refer me to menstrual disorder clinic so im still in pain 3😥😥 just trying to rest

So they said its best to speak to my GP to sort it out x

Oh right ok there really helpful then 🙈 have you got some decent pain relief at home? X

You can still try 111 and get some better pain relief. More like a second opinion by a GP 🙂 you’d probably just have a telephone call and if they prescribe it would be sent to a pharmacy. Hope you feel better soon 🙂

Hi sorry to hear your in so much pain, I would ring 111 and speak with them about your pain levels as read below about your comment on A&E

I would definitely change GP and get a second opinion they just can’t treat anyone like this infuriates me when they just dismiss us when we know our bodies best Xx

OK first. If they're referring to PCOS when they say you can't have children, that's simply not true. I know as I have PCOS and while it is more difficult many many women with PCOS go on to have children.

Secondly, you need to call your GP surgery and say you want to speak to a different doctor for a second opinion. Tell them everything you've told us and tell them you're entitled to a life without pain and to be referred to a specialist if they themselves cannot alleviate this pain. You need to push push push here. It is NOT normal or OK for you to have to put up with any of these symptoms.

Good luck, please let us know how you get on

Pco is v commonly associated with endometriosis. You need usg and probably diag laparoscopy too. Obvioulsy you need gynae referral. Who said you cant have children?Very good new medicines have come up yo relieve your pain. Youll be fine.

I am American and I don't know how your health system works, nor much about your condition. But I urge you to make sure that your blood has sufficient iron. When I went through menopause I bled so much that I became dangerously anemic, and my doctor said if my iron dropped much more I would need a transfusion or risk my heart stopping. I had years of painful heavy periods. Ultimately I was being scheduled for a hysterectomy due to a fibroid that was causing the bleeding. But during the pre-op exam, the doctor was able to remove it quite easily, just with his hand, it was so weird, but immediately the bleeding stopped, and my life improved incredibly.

To control bleeding, diet is important. I hope you'll make sure you are not taking a lot of aspirin or another medication that thins your blood. Some foods, such as fish oil, or flax seed, or other foods rich in important omega 3 fatty acids unfortunately also thin your blood if taken in excess.

Drinking gelatin helped me a lot when I bled a lot. I would dissolve it in hot water and add some grape juice. You are a young person, you can get better, you will get through this, be brave and have faith. It is such a stressful time for all of humanity right now. Perhaps this is how your body is handling your reasonable sadness and fears. Stress made both the pain and bleeding much worse for me when I was young. My worst episodes happened during stressful times. I am not minimizing your genuine problems, just encouraging you to trust that if your body gets rest and positive thinking and relaxation, you will heal faster. Please take extra good care of yourself and try to look on the bright side and try to cheer up and distract yourself when bad thoughts enter your mind. Your doctor may be having a very rough time too, with so many very ill and dying patients. Perhaps just call her and give her a kind word and double check that she checked your iron levels. It is good you reached out. Rest and relax, eat well, and pray or meditate or journal. I wish you health and happiness. Strength and courage!

Are you in the UK? You are well within your rights to call the GP practice to insist on speaking with the practice manager or lead partner. Tell the receptionist you want to make a serious complaint, the doctor is has discriminated against you based on your gender you need to speak to someone senior urgently or you are going to complain to NHS (where you are), clinical commissioning group and the governing body for doctors. They should never decide treatment like this based on whether you can have a baby or not. It should scare them into doing something. That was such an inappropriate thing to say, they should still treat your symptoms and refer you. Its also worth changing your GP practice as that is awful.

Whether they say call 111 or not, it you're local hospital I'd go down to A&E. They will treat your pain and hopefully also refer you to a specialist endo consultant.

Once the surgery's referred you I'd leave a Google review on their surgery's page, 1 star, naming the doctor and explaining what they said. They will take that seriously when it's so public

Good luck xx

Hi1) Please see another GP. Otherwise change your GP practice and see someone good.

2) You mentioned you can’t afford private gyane. I was same but I paid for one off consultation - it cost me 200 pounds but best money I’ve spent on myself. It was like finally someone believed me and told me why I still had so much pain and how he can help me. He not only gave me hope but he then wrote to GP to refer to him and saw me quickly and had surgery in NHS. As others said , do this as a Xmas gift to yourself. But first research well who you want to see. Someone who works at endometriosis centre would be best.

3) get better pain relief

4) ask /demand for blood test- need to make sure you are not anaemia etc.

5) buy yourself some iron tablets from pharmacist.

And finally Don’t let anyone fob you off or treat you as if it’s in your head. I was treated like I was morphine seeking when I ended up in A&E with severe pains which I couldn’t control with other tablets. . They don’t live in such pain you do or I did.

Im a student nurse and i cant afford it hun for private and they said i wouldnt been seen till late next year if i went on the NHS route as it dont cut the que. Im just at home crying most days in pain and now the GP wont give appointments out 💔💔

No point going on about nice guidelines this lady wants immediate help so the best thing is emergency care not all doctors even look at nice guidelines and they are purely that a guide they can choose to refer you by these or choose not to this lady needs immediate care for her symptoms if g.p is not even thinking about endo she must go to emergency room

Hi my love,

I hope some kind of positive progress was made last night - sorry I'm only just seeing this urgent message.

I'd definitely just bypass everyone & go to A&E - even if it's at a different hospital & change GP. Immediate issues aside, you're losing a lot of blood & that, in and of itself, should warrant a doctor springing into action.

But I understand that in the throes of pain, despair & tears, people still don't listen to you & it's hard to fight your corner. I won't add my own rant to the desperate situation (or lack thereof) of women's healthcare. Big hugs to you!

Do update us when you're able - we may not be with you physically, but I'm sure I speak for all us other ladies when I say, we're here for you in moral support, encouragement, thoughts & prayers.

May you win this battle & be put onto the right pathway

See the updates bellow, i have cancelled my private appointment as i dont have enough money for the whole care and i just hid in my room all day as my pain has got worse and i am changing my pad every hour

Hi I really really hope you went to A and E. Dont call to ask permission they just put you off, you are in agony just turn up they can't turn you away!! If nothing else you will get sufficient pain relief. I have to take tramadol in that kind of pain. My fear is your constant bleeding, its a clear emergency and you need to go straight away. Where in uk are you xx

Im from the midlands and i didnt go as i got advised not too now im changing my pad every hour and just not sure what to do anymore

Hi, so sorry you are feeling like this. Like all the ladies have said above get a second opinion. I would go to a and e if you can’t go privately, I had to do that first they said I had ibs - I had to beg them to say no I’ve got stage four endo and eventually they referred me to gynae where they had to operate as I had a 11cm blood cyst on my ovary! You know your body, and when it’s saying to you it’s not right it means it. You got this - keep fighting and hope you get better soon. Take care and let us know how you get on. There are some nice doctors out there I promise and once you have been listened to it feels much better!

Hi, When you say you cant have children, you mean you don't at the moment or?I think if it was me I'd go to A&E!

Losing as you say bleeding since September with clots could mean you are losing blood from another area in your pelvis. Yes sometimes women do bleed a lot and for extended times but Sept is a while ago!

Yes go to A&E today. At least you will examined and they will refer you.

Good Luck.

👍

A year ago i was seen by fertitliy, they turned me away and gave me adoption leaflets and forstering i put a compaint into pals they turned me away and swept it under the carpet even though no one done any futher tests

Well. My mother had a friend who was told she wouldn't be able to have children. She went into a career, married, they decided to adopt, they adopted, 1 then another child. When she turned 41 her mother died, she was very stressed, gave her job up at 42 yrs she got stomach ache which came and went. The biggest shock came when they found she was pregnant!

Im 100% not pregnant i have been bleeding since 27th september and im in so much pain

Go to Aand E

A&E turned me away saying i was a GP matter 💔💔

This is not acceptable. You deserve better. I am sorry you have been pushed into this situation by someone who is not properly addressing your care.

1. File a complaint with the practice manager and if this is not addressed quickly and seriously, contact PALs. Under no circumstances should you be denied care when the attempted treatments are not working and a solution has not been arrived at. PCOS alone should not be behaving like this and to through an inability to conceive at you as an excuse to leave you untreated is disgusting. Never ever should you be dismissed like this or treated this way.

2. Request an appointment with another GP - preferrable female, if possible, so perhaps they might have a better understanding - and request a referral. Sadly gynaecology wait times are not the best even before Covid but a step forward is certainly a massive improvement from doing nothing. Also, request pain treatment. Explain what you have tried. Be prepared to give details of what pain is like day to day over a week or so (what it feels like (sharp/achy/etc), where the pain starts and radiates to, how it impacts your ability to focus or take care of any responsibilities and how it is affecting you mentally. Also go over what has been tried and has not worked. Try not to be rushed or cut off. If you love with someone you can share this with ask them to sit with you and support you if it is a telephone appt.

This is 100% unacceptable and you deserve better.

If you are unable to cope through the weekend do go through the appropriate channels for your local hospital to see if you can be seen by someone. Don't feel you need to just put up with it.

In the meantime try heat (microwave bag/hot water bottle) and if you have access to one a tens machine might help some as well. By the sounds of it these won't omit the pain (nor will they solve the issue) but might help while sorting this horrific lack of care out.

While the pain and symptoms could very well be endo related (you can have both) other possibile causes for your symptoms need to also be followed up on and checked as well, which is also done via a gynaecologist.

I wish you luck and relief.

It was two female doctors that have turned me down and i just given up the bleeding and pain has got worse since i have tries ibrofen

That is shocking that two female doctors have just turned you down for care.

If you are taking Mefenamic Acid you shouldn't take Ibprofen as well (they are both antiinflammatories) as if can lead to issues.

Don't give up. File a complaint. The only way to stop things alike this happening is to not accept it as the final step when they do.

I stopped taking mefenamic acid before i took ibprofen and i have they spoke to me saying they dont believe me

Hi everyone, i tried to sleep though the pain as i was told by 111 that they wouldnt do anything for me, the pain is getting worse when i wake up and i am tired and emotional and have no clue where to go and i might try again today thank you ❤❤❤

Have you thought about a and e? Or 111 again You can’t be left in this much pain at home x

111 again see bellow comment on afrohair i am crying my eyes out after how a doctor at urgent care spoke to me

I’ve just seen I just don’t understand them if your in so much pain the survey a and e have to see you? I feel for you please don’t feel like your alone in this, have you got a family member that you could speak to and get there opinion on how you look etc? X

I have my partner with me on the phone and was angry at the way she spoke to me and said i havent slept just got home and into bed 💔💔💔

See if you can get some sleep ☺️ glad you have someone there to keep an eye on you if you get any worse then I would go to a and e as someone needs to see you x

Hi love is there any way you can get to a hospital for immediate care it was on the news this morning that people can still go to a and e but aren't I'm guessing the operator you are speaking to on 111 are giving out the wrong advice you need advice as surely your iron will be low and you will need fluids inside you .please try and get to a hospital

Been to urgent care they sent me home and said there is nothing wrong with me and that if its an on going problem then i need to raise it again with the GP or seek private healthcare. As they cant do anything my blood pressure was high and heart rate was 120 but sent me home in floods of tears i was doubled over in pain. Feel like i wasted there time sat in bed crying my eyes out i want to give up now

And she said a&e wouldnt do anything for me besides take my bloods and would ask the GP to see me

Bit of update, a&e turned me away as they said if its on going then a GP would need to see you. I have got in contact with private endometriosis clinic in birmigham to see if i can at least have an appointment and pay for it myself

How are today? I just don’t understand how a &e can turn people away if there in that much pain, hope your pain levels aren’t as bad today.

Still in loads of pain, just hinding away from everyone, i got in contact with specialist private and they said they have an appointment on 1st december 2020 for £300 but if i needed any futher treatment i would have to look at getting health loan or they could write a letter to the GP asking for me to be reffered on nhs but they wouldnt be sure of how long it would be waiting wise and i would need to pay £725 for my MRI if i needed one so i dont know what to do

Is it an option for you to have the private consultation? If so I would see what they say then ask to be put back on nhs if the loan option isn’t an option.

I’ve had private care and my consultant was great he was the one who found endo and adeno after many years and previous surgery on nhs when I was told it was heavy periods so 🤞🤞 for you.

I can pay for the consultation as i just sold my switch. But i wonder how long it would take for my GP to reffer to me for futher treatment so i am sure xx

Think everything is so behind due to covid so I really don’t know but hopefully it wouldn’t be too long but you can ask the DR this when you see them, that’s good you can have the consultation and it’s not too long away ☺️ xx

Just so you know they don't do loan options any more my specialist said all companies have stopped because they weren't getting paid no more loans for surgery

Hi i have canceled it we just only have enough money for consultation and MRI the bleeding is getting worse i dont know what to do anymore i want to cry and hide away from the world 😥

Have you got a walk in near you? Have you got worse then? X

I have been to walk in centre, they was the ones who had ago at me saying they are acute treatment not dealing with on going problems so i have gave up

I can’t believe you have been turned away again it’s awful I really feel for you x

Yeah im ready to give up now 😥😥😥

Hi,I am very confused by what's happened.

I can't understand your doctor. Are they female?

You can get another appointment at your doctors with a second different Doctor. Speak to your Practice Manager perhaps about your discontent on how I'll you feel so ill. Also if that doesn't work register at a different doctors.

Normally the A&E with pain or showing heavy bleeding will be more helpful.

I am the same with pain I look great until I'm very ill.

Unfortunately it's not helpful, I remember when I had serious pancreatic issues. They said I should go home then another said we will check your pancreas. 24hrs later they found I had heart enzyme issues.

Good Luck.

It is time for you to contact PALs with a formal complaint.

I have hun and the practice manager of my doctors surgery. If i dont get any response i am just turning up and a&e

Hi ladies just a little update,The practice manager and the doctor spoke to me this morning saying that they wont reffer me to gyne doctor over concerns the hospital with reject the refferal to gyne. That i would have to wait for ultrasound again. But that can take up to over 1 month wait for it. I explained i need the help now as the pain has gotten worse, i feel tired and dizzy and just want to sleep all the time and that im bleeding still. They said i will just have to wait or if i dont like the decision then i need to move doctors 💔

Missy100 Lou93 Afrohair

This is ridiculous now I really feel for you, so they don’t think gyne will accept you but on what terms? Have you had an ultrasound before? Is it an option for you to look for another GP practice?

What are your symptoms again just don’t understand them and I’m sure you don’t either X

I have had 3 ultrasounds, i have been bleeding since 27th september, chronic right side pelvis pain, tiredness, dizzness and pain when i wee x

Did they show anything? Is it an option to see another gp at a different practice? X

Enlarged right ovary and couldnt see left ovary that is what i was told at the scan

What are you going to do then? Try walk in again and say you can’t get an appointment? X