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Let down again by medics devastated 😢😢😢

Hi everyone.

I’m distraught right now.

Last week I had such a positive chat with endo nurse; referral was discussed with colorectal surgeon, mri and been brought to see my endo specialist soon.

Well all that has been taken away.

He says it’s old blood not faeces ; excuse me I know what old blood looks like 🤦🏽‍♀️ and fistula unlikely.

He dismisses my medical elements without even seeing me?! WTF!!!!

I feel hopeless I am now leaking urine as wind passes both ends as well as crapping myself.

The wait is 8 months for my lap and I can’t live like this.

I haven’t felt so depressed since I lost my baby in July.

I don’t why medics never take me seriously. I have never felt so let down 😭😭😭

My nurse practitioner is phoning later.

I don’t know where to go from here...

39 Replies
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So sorry - you poor thing. Any hope of bringing the lap closer? Cancellation etc?

Can you get a 2nd opinion?

x

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Thank you for the reply.

I’m on the cancellation list but apparently it’s rare to get a cancellation .

If the endo consultant hasn’t believed me no one else will 😪 xoxo

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That is so heartbreaking - Sending you a big hug sweetie.

I am sure others on here will share some personal experiences that might help.

It is super painful to have to wait 8 months.....

xxx

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Thank you for your kind words.

All the best to you xoxo

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Aw I’m so sorry to hear about your latest setback, it’s awful disheartening when medics don’t take you on, very frustrating. Xx

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Thank you.

They always think they know best but we know our bodies and they should acknowledge that. 🤨 I wish she hadn’t promised so much and then gone back on it.

Nurse practitioner is disgusted by it and I’m seeing my GP on Tuesday morning. xoxo

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Good luck for your GP appt today x

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Thank you. My GP was really supportive but her hands are tied; being under secondary care complicates matters. Which I thought it would 😩 She will write to my endo consultant listing the severity of my symptoms and try to push me through urgently whether or not he will listen is another matter. Now I’ve got back in touch with my fertility specialist secretary tad she said to if I got no referral. He’s back at my clinic on Thursday; he has clinics all over the place. I just want someone to do to sort me out. xoxo

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Yeah course you just want things sorted, it’s going on far too long for you and you need some answers. No one knows our bodies better than us xx

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How awful that the doctor didn't even see you! Sorry you're going through this. Have you considered going private at all for the lap to speed things along? x

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Thank you for your reply.

I wish I could afford it. I’m not in that financial situation 😩 i might consider seeing a colorectal privately for a consultation if I get no joy with nhs and if they thought colonoscopy was needed I could go on their nhs list. xoxo

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I'm so sorry to read this Jess. I'm disgusted by your Doctors attitude & find it so patronising of him to say it's old blood, not faeces. Like you wouldn't know the difference! I might expect stupid talk like from a GP but not from an Endo specialist! I wish I had something to say to help you but I just hope somebody will decide to help you sooner rather than later. I've got servere Endo but luckily only have horrendous period pain. Bless you, your symptoms are totally awful. My heart goes out to you, lots of love xx

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Thank you. Just by emphasising has made me feel much better. 😊 I was shocked by his attitude and angry!

I have spoken with my nurse practitioner who was disgusted and thought the whole thing was ridiculous and has booked me to see my GP.

I have also emailed my fertility specialist secretary to reinstate the referral to the colorectal specialist; I stated all my Symptoms. I hope someone can help me 🙏🏻 I will fight back 👍 xoxo

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Wishing you lots of luck. Endometriosis is bad enough without having to fight tooth & nail for every bit of help. I was lucky & had a brilliant consultant but he just seemed to disappear ( even from Private work ) & my consultant changed. Nothing but problems with appointments / treatment after that. It's not good enough... You want a baby so badly but have all the other Endometriosis issues & have to battle for help before that happens. I'd love to see that down the line your Endometriosis is sorted & you and your husband have your precious baby. It's a shame Endometriosis is not seen as a more serious problem 😘 x

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It is honestly ridiculous!

The closet I got was a chemical pregnancy last year. And since then these symptoms of fitsula😪

I can’t try because I’m so ill and they don’t care 😪you are one in many...

I can’t believe the nurse promised all these investigations and now nothing because he can diagnose without seeing me 🤦🏽‍♀️ gobsmacked by the U turn is an understatement.

I said my endo returned last year; medics reactions? “ don’t be silly it can’t be back that quickly “ and low and behold it was back 🤦🏽‍♀️ depressing they can’t just believe me 🤦🏽‍♀️ I’m sick of their reactions.

I’m sorry your new consultant is as good that sucks. Like it’s not awful enough to suffer symptoms but to have to fight and have medics not believe you is the real cherry on the cake. 🤦🏽‍♀️it a shame because if such a truly awful condition xoxo

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Hi Jess,

So sorry about this.

My advice would be the same you gave me once, and that worked for me: send them a letter explaining your concerns. Mention on how much it may be affecting your mental and physical health. Challenge what they told you against the knowledge you also have.

When I sent my letter I didn’t mean for it to be a complaint letter, but they took it that way and within 3 days of posting it They were calling me, apologising and booking and appointment for the following week!

Good luck xxx

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The endo nurse was pro investigations last week and now the consultant has dismissed my concerns without even seeing me. I find it so crushing to not believed like I would lie 😭 they did this last time and told endo couldn’t re grow so quickly well my did and I proved it 😏 I don’t know why we have to fight the medics so much 😪 I don’t what is about me that makes them think I’m liar 😮

I have spoken to my nurse practitioner who thinks it’s disgusting and disgraceful; she has booked me to see my GP on Tuesday. I also emailed my fertility specialist secretary to reinstate the referral to the colorectal specialist and stated my symptoms.

When I feel stronger I will fight them. 👍Even if it’s through the back door 🚪 🤫

I feel really let down and silly for trusting them. 😪

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Hi Jess sorry that you are having so much trouble, you are really going through it, sending you hugs. I would definitely ask for a second opinion, you are within your rights to ask for this and as CatDV has said above putting it in a letter clearly and concisely will mean that they have to take your concerns seriously (which they should have done in the first place). Don't lose hope and I know you shouldn't have to and it feels like a battle, but keep going until you are taken seriously and listened to xx

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Thank you for the supportive words really appreciate it.

I will find the strength to fight; I won’t tolerate that patronising behaviour. He couldn’t have been more patronising if he tried... I’m so angry at him 🤬when I’ve calmed down I will write to PALS... 😏

I find it very boring medics keep disbelieving me and I keep proving them wrong 🤨

I will see what my fertility specialist has to say ; I emailed his secretary and ask have the referral to the colorectal specialist reinstated ( he cancelled it to send me to see this so called specialist 🤬) my fertility specialist he’s my endo consultants colleague; he won’t be impressed how my symptoms are being so ignored.. 😂

The nurse practitioner was really disgusted by how I’d been treated; and has organised an appointment to see my GP. xoxo

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I'm so sorry can the endo nurse not fight your corner they can test to see what you are passing easily enough . How awful for you to be living like this I hope you get the help you need quickly x

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She was all for further investigations but because the consultant has dismissed my concerns without seeing me she won’t/ can’t go against his decision. He’s happy to leave me with these symptoms for 8 months 😪 the nurse practitioner thinks that is ridiculous her words and has booked me to see my GP. 👍

It’s demoralising not to feel believed; the only good consultant I’ve ever had is my fertility specialist and he’s always happy to do any referrals I need. He always believes me. I’ve asked him to reinstate my referral to colorectal specialist based on my symptoms. He cancelled it as he thought I’d be seeing a colorectal specialist at the hospital; this hasn’t happened.

I will ask my GP if I can prove that is happening; thank you. xoxo

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I'm just so sorry you are going through all this I hope between your Fertility specialist and your GP they can help you it's awful that you have to battle for the help you need I hope to hear that you are getting that care sending my love x

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Thank you for your support xoxo

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Hi Jess, I’m so very sorry to hear this. I am just hoping that you might get a cancellation. It’s very disappointing for the surgeon to have been so dismissive. Is it possible even to have a second opinion? xx

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I’m so angry he is happy to leave me like this for 8 long months; I’m on a cancellation list but the chance of cancellation is rare.

I don’t understand how he can diagnose me without seeing me.

I’m so tired of not being believed by medics; I don’t know why they think I lie 😳

I have emailed my fertility specialist to ask if he can reinstate the referral to the colorectal specialist ; he cancelled the referral to send me to this so called specialist as he thought I’d see a colorectal specialist as well regarding my bowel issues; it was done in the best of intentions. I now regret going this route.

My nurse practitioner said the way they are happy to leave like this for 8 months is “ ridiculous “ and she was shocked by how I’ve been treated. She’s booked me to see my GP and I will about referral to colorectal specialist ( if fertility specialist doesn’t agree) and see if she can do anything to help my case. I feel so depressed and I think I might need antidepressants.

I’m not sure I can trust this specialist anymore; I’m really shaken up by his response. xoxo

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It’s not good enough to expect you to continue on in this way for another eight months. I have had a number of encounters with male health professionals who demonstrated a total lack of empathy for female sexual/reproductive health issues. It makes me very angry. I do hope that your nurse practitioner and fertility specialist can support you to get the treatment you need to have the quality of life we all deserve. It’s understandable you feel so low. Is it possible to discuss your emotional well being with your GP? Maybe some counselling would be of help to you at this time too? Sending you lots of love xxx

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I’m sorry to hear you have experienced issues with male medics; you are right they do lack empathy towards our issues. We shouldn’t be made to suffer like this 😩

Maybe getting emotional support will help. Infertility is difficult enough to deal let alone having these symptoms and a dismissive consultant.

I don’t know if I can trust him now. I hope I can get past this but I’m not sure I can move forwards with him. xoxo

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What a poor and patronising second rate representation of our health service. This is what annoys me... when we know our own bodies and we’re not listened to!!! The only time I’ve ever been proven wrong there is my recent ankle fracture... it wasn’t a sprain. 😂

I know you feel sad; but that will turn in to anger and you will have the energy to take this on further. Hoping your nurse practitioner helped. This is no way to be treated or expected to carry on every day without getting it resolved. Sending you lots of love xx

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Thank you my love.

I’m really really hurt but I know deep down I’m a tough cookie and I will fight to get help; why everything has to such a fight is beyond me. I’m so tired and frustrated of flipping medics not believing me🤨

The nurse practitioner was so supportive and horrified by the response I got and in her words” is ridiculous “ and she’s booked me to see my GP on Tuesday which I wouldn’t have got as there were no spaces left she sneaked me in! She was sorry she couldn’t do more for me. I was grateful she listened. I have got some medics on my side.

I have also emailed my fertility specialist secretary and asked if he can reinstate my referral to the colorectal specialist; he had cancelled it to send me to the endo specialist as he thought I’d also see a colorectal specialist for the bowel issues I am having there. I told him all my symptoms. In past he’s done all my referrals and been good to me. He does what needs to be done. That is how specialists should be.

I am tempted to contact PALS; one moment I was offered MRI scan, referral to colorectal specialist, and to at least see my specialist soon by my endo nurse over my symptoms and now he dismisses my concerns without seeing me. Disgusted.

Right now my priority is to get my health sorted 😊👍

Thank you for being there. I hope all is going well with you ❤️❤️❤️ xoxo

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Whenever you want some advice or a rant you just let me know. This must be so hard on you but you are right. You are a fighter! And there’s no shame in getting some extra help and if that’s some tablets to help you restore your strength a little then you get that support my dear xx

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Thank you that’s very kind 😊 xoxo

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Jess I’m so sorry. I would definitely be seeking a second opinion. I know that delays things further but you need a dr who will listen and take care of you. And I promise they are out there.

I’m incredibly pissed off with the nhs system at the moment!! It’s not working in so many ways!!

I am very fortunate to have found an Endo specialist who listens and understands. And it’s the incredibly crap system that’s letting me down coz he can’t operate for several months as the nhs can’t cope with the demand on it.

I’m meeting with my local mp next week and writing several letters highlighting how let down I feel as a patient needing treatment.

I’m incredibly low at the moment but feel taking some control will help. Well at least the ranting about it will!!

All I can say is don’t stop pushing for what you want/need. Always here if you need an ear. Take care xx 💛💛

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Thank you for your reply and I’m sorry to hear you are having a difficult time with the NHS.

I’m thinking along those lines as I have lost trust with him now and I’m not sure I can go back to him. Admittedly it’s raw but I need to feel supported by my consultant. It’s really shaken me up.

I have contacted my fertility doctor and asked to reinstate the referral to the colorectal specialist. He cancelled it in favour for me to see this endo specialist and made it out I would see a colorectal specialist because I have such severe bowel symptoms ; this hasn’t happened surprise surprise 🤦🏽‍♀️My fertility doctor he has always done any referrals I needed and been supportive of me. And always believed me. Never made me feel like this. This is how specialists should be 🤔

Good for you raising awareness 👍 people symptoms worsen on these long waiting lists. Conditions get worse. It’s ridiculous.

My nurse practitioner was shocked and said the way I’d been treated was “ ridiculous “ and that’s a healthcare worker they normally stand shoulder to shoulder! She’s booked me to see my GP on Tuesday and hope she can help. xoxo

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if it helps i went to a private endo specialist in the south of UK and he put a rocket quite frankly up my gp and consultant's ( up here in norths ) nether regions.I wasin hideous pain 4 days and still 7 months later just the same. He got me back in the nhs system to be treated under the south guy on nhs who is far more of an expert. I hit a blank wall for months before this 7 in fact , even high dose morphine didnt work, nothing amytriptaline you name it oxycodoene and then i got seen as making it up as a potential junkie! and cruely decided to withdraw them all. The stress from nearly losing my job i was off over a year as i have big debtsand no support was pushing me to breaking point i swear i saw the sun come up and down every day and no sleep. PALS was a joke the response patronising and i said it was . Im in a better place now adhesions have been removed from a hystorectomy but im not sureits th ewhole story i have to decide whether to go again on nhs end of tis year down south but adhesions can make it worse. Also i wonder if codeine now causes pain as my bowel is so sensitive now i beleive its bowel endo too. They only did to save money on prostrap injections i beleive. Maybe try this approach see a private gp id love to recommend mine pm me if you want hes not a con man respectful knowledgable and truely does good in the world. It may speed things up for you. Im 2 years down the line. Somedays are good some bad im bac at work but im not as strong in alotof ways. Sometimes i think i have residual endo as i can only take crumbs literally of tibolone to abate the weats a bit and keep me half sane. I cant even sue them its a complication. I never had kids im 44 . I regret it now. Canyou beleive they were such idiots that they were going to remove my uterus but not ovaries. Like what the heck is that gonna do! Prostrap gonadatrophin agonists shut down the ovaries a uterus removal would have acheived nothing and i had no endo on my uterus . your not alone. GO private if you have to $6000 is about the going rate and sometimes worth it to save your future. This really needs raising at parlimentary level its so evil and th epain is totallyuunderestermated and these surgeons earn so much. Dont give up hun you will get through this.

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Sorry to hear that you're getting messed around again Jess. Just when it seemed like you were getting somewhere, so frustrating for you!☹ I hope you can get this sorted out!xx

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I saw my GP today and she was very supportive. But she can’t refer me as I’m under secondary care so she will write to my endo consultant with the severity of my symptoms and try to speed this thing along. I ha s got back in touch with my fertility specialist secretary as she said to if I couldn’t get the referal. He’s in Thursday so see what he says.

Round the merry go round I go 🙄Someone has to take this up surely 🤦🏽‍♀️xoxo

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Glad to hear the GP can see some sense although I guess it doesn't help an awful lot as she can't do much. Hopefully you get somewhere with the specialist when he's back!xx

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Thank you;It’s the endo consultant that is being difficult he’s a douche bag 🤨💩he is refusing to see me and is happy to keep me waiting 8 months for a lap like this! If I get no where PALS it will have to be.xoxo

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Absolutely and quite rightly so Jess! Its so wrong for him to dismiss all your symptoms just like that!👊Keep us posted!xx

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