Any advice

[Skybluepinkpaint]

Hi all,

I guess I’m here for some advice or just to know I’m not alone as I feel like I’m completely alone at the moment and either doctors don’t want to help me, or do want to help, but can’t!

Bit of back story . . . I have always had awful menstruation pain, resulting in me being prescribed the pill for the pain at the age of 12. This has got progressively worse since then. Ovulation pain entered the mix at about the age of 24. This has note developed it in a cycle of pretty much daily pain, which peaks and troughs throughout the month with my cycle. I’ve tried the combined pill, as well as the implant and also Tranexamix acid. I had a scare before Christmas as my C125 marker was elevated in some bloods. Luckily I was referred for immediate ultrasounds and these did not show anything malicious. My GP put in a gynae referral but the consultant will not see me until I have exhausted all other options so has said I need to try the coil.

Fast forward to today when I was booked to have this fitted at my local clinic, only to be told by the doctor that they are unable to fit this as they are only funded for this as a contraceptive and as my Husband has had a vasectomy, I do not qualify.

I completely broke down. I feel lost in this whole thing and I don’t know what else to do. I described all of my symptoms to the doctor today who said this is text book endometriosis, and my GP has also ‘off the record’ said this. I’m now waiting back to hear from my GP as to where I go now, and the doctor I wrote to today is also going to write a letter to my GP as this is clearly now having an impact on my mental health, as well as my day to day life.

I know this is so under diagnosed and am living through how difficult it is to get a diagnosis and I’m not really sure what I’m hoping for here, but figured reaching out to some ladies who have been through the same thing may help.

I’m sorry for the essay! Thank you for reading x

[MooMoo01]

Hi there,

I wanted to answer as I can completely understand why you are writing this post. It sounds like you are battling a magnitude of pain and symptoms on a daily basis and with no direction or pathway for treatment or relief going forward. I really can truly emphasise as this was so similar to my experience and it has such an impact on both the pain and your mental health. The fact you were offered a coil as some sort of treatment and then that was whipped away as you got there must have been devastating. It sounds like they know that you have endometriosis but there is no care being provided moving forward which so often can be the case.

I don’t know if it is helpful but I started at this point to look for specialist treatment centres for endometriosis, so that I could get on that pathway. I was very fortunate that I was able ( with help to go private ) but I know NHS services do exist it’s just getting to them.

I also wanted to say that there is hope… it’s such a difficult disease to manage and without and guidance or suppprt 100 times harder.

I really hope this is helpful,

With warmest regards

Victoria

[Skybluepinkpaint in reply to MooMoo01]

Thanks Victoria.

That’s exactly it. I just feel so alone with it all and don’t know where I go from here. I am hoping my GP comes back with good news but without being able to speak to her directly (I could only leave her an ‘update’ via the receptionist) I have no idea what’s what! I just feel like I’m no further forward and the daily fear of what pain is going to come that day is beginning to really affect me. I’m a mum of 2 so when I am in pain, just trying to function for them is so difficult.

I’ve never experienced issues with the NHS previously, and all the care I have gotten up until this issue has really come to head has been amazing, but right now, I feel completely let down and like most people just think it’s one of those things that comes with being female 🙄

Unfortunately going private isn’t an option for me so I have to be hopeful for eventfully getting the treatments and services I need through the NHS.

You really have helped though so thank you so much for responding. I know I’m not the only one struggling like this, but when it’s a constant daily battle, it’s hard to not feel alone with it all, so really, thank you 🥰

Stacey x

[MooMoo01 in reply to Skybluepinkpaint]

I’m glad it was helpful Stacey. Please do reach out if u ever want to chat about it. I think we feel alone because we are, there are so few doctors out there that understand this. But that being said they do exist and it’s just a matter of getting to them I’ve found it to be the most frustrating and distressing process to go through to get adequate support for endo. One thing I would like to add is don’t give up, if they don’t give you what you need then ask for a second opinion and definitely make enquiries as to whether there is a specialist endometriosis centre on the NHS nearby even if you have to search it out yourself. You don’t deserve to be left in that much pain. Do you mind if I ask if they have offered you any pain management ?

I have 2 children 2 so I totally get how challenging it can be. The uncertainty of the pain is so hard.

Sending warmest regards and hope you get what you need soon.

Victoria

[Mindfullness4791]

I'm sorry you are going through this. I'm outraged that they have refused you the coil as your husband has had a vasectomy. I have had 2 fitted and was never asked the question. My husband has had a vasectomy and my gp fitted it for the gynae issues, not contraception.Just a thought, go to the sexual health clinic and ask them to fit one?

Good luck xx

[Skybluepinkpaint]

Hi,

Thank you so much for taking the time to reply!

It was the sexual health clinic that I’d been to today, as advised by my GP. She said they can do them at the surgery but the wait is normally months so advised to visit the clinic 🤦🏻‍♀️ The doctor who I spoke with today said it’s a new thing since covid apparently to do with funding. Just another thing we can thank covid for!

Hoping my GP comes back and says I can have it there and not have to wait ages! Or will re-refer but I couldn’t speak directly with my GP, I could only give the receptionist an update so who knows what will happen now! My GP has been so good so I truly believe she didn’t know this would happen. She referred me to the gynae consultant at the hospital and was really cross when he declined the referral so I can only imagine what she’s going to be like now!

Just feel so stuck now with no path to go to get any form of answers or support xx

[Blackloganberry]

Hello, I’m so sorry to hear your story and really empathise with how you’re feeling, if it helps it’s really similar to what happened to me; pushed into taking loads of different contraceptive options before anyone would actually diagnose my illness. The NHS hasn’t been great at dealing with my endometriosis, even though I got surgery in the end and obviously had endo, it was a fight to get there. Its estimated 1 in 9 women have it now, so it shouldn’t be this hard to get to proper treatment! It’s an issue with education of the medical community and funding/research although I know that doesn’t help you right now, so big hugs.

I know you can’t afford private healthcare, but you could consider going to a private expert for a scan? The one I go to is about £400 to give you an idea of costs and that would tell you if you have it or not and then you can go back armed with a diagnosis to push treatment through and at least you’d know?

You could also look to see if any of your regional hospitals are ‘centres for endometriosis’ they are better set up to deal with endo and might be more receptive to your referral.

I know how hard it is advocating for yourself with this mystery disease.

Good luck & big hugs 🤗

[BloomingMarvellous]

Sadly your experience isn’t a one-off and certainly you’re not alone in getting a proper diagnosis and pathway to care. Services are so poor to begin with and over subscribed as they are too few. Am sure it’s a back door pressure to get more of us to go private to create these impassable gateways to even getting some sense of what’s going on for us. That however doesn’t help you here and now so really feeling the pain and frustration for you. It can make you feel gaslit and ignored as the pathway to accessing services seems both muddled and mired in fog to us and them it seems. Like you, and I as well as many on here have learned the tears of frustration and sheer exhaustion with the whole pain and denial thing can beat us into a wreak in a corner . Most of us are resilient resourceful souls and it feels like another cruel joke but turn the tears into energy to fuel you forward. Co-opt willing trusted supporters to do the bits for you that you know need doing but sometimes simply can’t manage. Don’t give up .

There are a few things worth trying. Remembering all the while that being patient won’t necessarily help here so be prepared to politely but firmly remind them this needs sorting NOW. Keep getting back to them, keep a diary of the pain and symptoms and provide copy for them. I would get back in touch with the consultant’s secretary and ask to get them to provide a means to fit the coil prescribed. Likely as not the left and right hand don’t know what they are doing here and they won’t have caught up with provision changes. Let them know it’s unacceptable and a denial of care. Give them no more than a week and no action then speak and write to NICE. Make a complaint, it’s the only way to flag the issue if they won’t listen. There are clear guidelines regards to endo and these aren’t being followed.

Your GP seems willing so look up your local Endo specialist centres and request a referral be put forward instead of waiting for the gynae referral to the endo services. Getting scans - There’s a resource available set up by Lindle - she’s on here for getting access to good services and proper scans. These are the points that if you can afford get them done. Standard radiographers don’t always have the skill sets required and it’s a way to radically reduce some of the errors and time wasting that goes on. It’s worth it. If you can afford a consultation with a specialist ( rigorously check them out ) it’s worth the step forward. Keep going back to the services until they hear you and act appropriately as well as outlining the problems be super clear what you are asking them to do - often they panic when faced with the problems rather than a specific request for certain action .

Write to your MP, take copy of timeline of care and symptoms and go visit them at their local surgery . It’s hard to ignore a visitor. Kick up a fuss and let them be aware of the Govt undertakings in regard to women’s health.

Amongst all of that look at Kate Edmonds on @heal-endo & her book . Self care is a marvellous thing amongst the sea of being ignored and the knowledge she gathers together will arm you towards getting better care lined up.

[Hidden]

I agree the unknown makes you stressed and not trusting doctors really takes a toll on your mental health. Change your doctor and find a good one that can calm you. Since I practice stretching and other exercises and relaxation techniques I feel much better. Pay attention to your breathing at the belly. I noticed since I breath better even when I am stressed I manage to control better my pain. Stress really makes the pain worse I think because I forget to breath and I push my belly inside out of anxiety. I gave up on doctors long ago now I just try to relax because worrying makes it only worse.

[Mcyizml2]

My gp fitted this for endometriosis! And I was seen without exhausting all the options. I would ask for a referral to an endometriosis specialist centre, where there are consultants that deal with this every day and will understand. If you have private healthcare or can afford to pay google your local specialist endometriosis nhs centre, find the consultants and get a private appointment and diagnostic MRI with them. Mine diagnosed me and offered to fit the coil although I just got the go to do it. Even if you can’t afford to continue with private after that you’ve got the diagnosis then …