My consultant, despite knowing I have a long and colourful history with stage 4 endometriosis and PCOS, is refusing treatment of any kind, including pain relief until I've had an MRI scan to see whats going on anatomically first.
My endo flared up again in Jan 2020 after having the mirena removed, by June I couldn't manage the symptoms myself so i spoke to my GP. They wanted to prescribe meds I'd taken before, that didn't work and I explained this. My GP's response was "that's okay, you'll take them anyway because you'll need to be seen at some point". It felt as if having to take conceptive pills and using ineffective pain relief was a prerequisite to gaining access to specialist treatment.
Since then my GP has refused to treat me claiming it's up to the consultant.
So I waited 9 months for the consultant and got all of 10 minutes with them and they refused to do anything to help reduce my symptoms.
I wasn't really happy with the outcome of my consultation so I emailed PALs explaining my concerns and my need for support.
The response I have received today just confirms they still won't be doing anything until they've done an MRI...
I'm left gobsmacked that they think it's okay for me to be passing out in pain, that I only sleep in 1-4 hour a day, that I'm only consuming 600kcal day because I'm so nauseous and vomitus all the time.
I know I'm not alone in my experiences, so you'll understand how appalled, demoralised and genuinely just gutted about the lack of support I've received.
I'm not asking for miracles, just the little things that some people take for granted like...8 hours sleep and pain that's mild at best and limited to 3-5 days a month... that would be lovely.
Please dont think I'm not trying to help myself in all this either. I'm taking Diindolymethane as an Aromatase Inhibitor. Liquorice for its anti androgen and anti inflammatory activities and peppermint tea for nausea.
Pain medications I always struggle with, they're never that effective. I have morphine for emergencies, courtesy of a friend. My weight is good, my diet as healthy/endo friendly as it can be, I avoid booze, sugar, caffeine etc I stay as active as possible and try to do something everyday that's good for the soul, but I'm so poorly it's not making a difference. I cant exercise because of pain anymore which grieves me because I was so active before this flare up.
I'm not ungrateful for the MRI, but in all likelihood it'll be several more months before I see the consultant again. I'm not being pessimistic, I've had endo for 26 years so I know how this goes.
Yet still my experience has left me wondering...what do you need to do to get a conversation with a specialist let alone support?
Thanks for reading. Much love x
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BluStarFern
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I'm going to assume that since you have a long and colourful history with endo that you've covered your bases and made contact with a centre that specialises in endometriosis and these types of things...
Here's my little suggestion, based on my experience. When I've felt really unwell in the middle of the night or on the weekend, I've called NHS 24 on their number 111. When I've been sick, they've always invited me to come and see one of the doctors in the out-of-hours doctor's office. The doctors are different every time, but they're very used to seeing people in distress (who are not so badly off that they'd be in A&E). They've always been kind and helpful to me, and they've often helped me with "stop-gap" measures to help me get through to the next GP appointment or health appointment.
I'm also waiting for an MRI before the doctors help me to make a plan about surgery. In the mean time, I'm trying my best to "hold the fort" with some pain management and some hormonal treatment.
This is my temporary "rescue pack":
For pain management, I'm trying buscopan for cramps, and mefenamic acid for the endo period pain (starting a couple of days before, then during the period time). Mefenamic acid, I think, helps to reduce the effects of the painful prostaglandins and is an anti-inflammatory. I also have some paracetamol that I can alternate with the mefenamic acid if it's very sore. For high pain moments, I have some co-codamol in the drawer that I only rarely use (using it too often would lead to highly uncomfortable constipation and the pain relief effect would decrease over time).
For hormonal treatment, I'm trying the Mirena coil plus one mini pill a day to try to suppress periods. I'm keeping my fingers crossed this will help to reduce periods and period pain and to slow down the endo.
I know that you may have tried all of these things because you've been coping with endo for a long time. But, I thought that maybe seeing someone else's temporary holding pattern before MRI might inspire you with some ideas.
I wish I had answers for you, and for me! But I can send you good wishes. I hope you speak to a GP who listens soon.
Thank you for sharing your rescue pack with me, I'm always instead to know how others cope. Sadly part of living with the condition is accepting we may never get the answers, but I'll keep searching keep trying and hopefully find happiness and comfort where I can. Good luck in your journey, best wishes x
Ask GP or consultant to put the MRI as mega urgent if they are adamant you can’t take pain killers. They can if they choose to. If the referral has gone through you can ring radiology and check, possibly speed things up.Personally if it’s not an anti-inflammatory what difference would it make. You need to get a real answer as they shouldn’t leave you in pain. I don’t know why the medical profession does this. Nefopam isn’t an opiate, I don’t think it’s classed as anti-inflammatory either.
They need to realise that your physical and mental health is at risk. Your GP should be chasing this and helping with treatment, not refusing. Have a look at the GMC website, lots of info about how GP’s should be helping, etc.
I know what you are going through, I’ve lost huge amounts of weight and because I had various scans last year they all seem to be ignoring the fact I can’t eat much. Thought hysterectomy would cure it but hasn’t.
You did the right thing with PALS but they are pretty useless most of the time. I went to main complaints and last week CEO. I’m hoping for a reply tomorrow.
Im sorry to hear about troubles, thank you for sharing and thank you for the advice and support. I have been considering a complaint the NHS England, because PALs seem like a glorified messaging service. I wish you all the best in your journey and hope you find respite x
I'm in the UK and yes it's an accredited endo centre linked to the Uni campus. I always get lulled into a false sense of security with these places, an accredited centre does not mean you will be listened to let alone treated fairly.
Maybe so but it seems appropriate that they want to do an MRI before operating if you are wanting surgery and it is hardly their fault that things are so behind with Coivid.
Hi, that's awful. Is it a general gynaecologist or a bsge endo specialist? Each hospital has a clinical director (I think that's what they're called), I'd insist on speaking with them and explain how awful your experience has been. If you can find out their name it's also easy to work our their email. Hopefully it's a unique name, then it will be first name.surname @ nhs.net sometimes it's first initial then surname @nhs.net.
The GP is not allowed to wash their hands of you. You don't have constant access to your consultant either way. I'd put in a complaint to the GP practice manager. If you think they'll be useless then contact NHS England about your experience. They should be helping you with pain relief at least.
Worth changing to a better GP practice?
It might be worth going to A&E every time it's excruciating and unmanageable. Hopefully they'll do something re pain relief once they see you multiple times.
When I was waiting for an mri I contacted the booking team every day asking for cancellations, it worked I got it within a month. Worth having a friendly conversation with them about how much pain your in and therefore would be grateful for a quicker appt. Ask them if they don't mind you calling daily to check for cancellations. People are very scared to go to hospital in the current climate so you may as well take advantage.
I wasn't happy with my consultant so I asked to change to another. That happened last year. Took a few months to get a new appt but it was so worth it. I changed from one specialist in my local bsge centre to another. If you're at a bsge centre then ask the endo nurse to switch your care to the other consultant.
Have you heard of Etoricoxib, it was suggested by my GP and its changed my life. I used to use naproxen and hated the side effects. Etoricoxib is taken with omeprazole and I've had no side effects. It's also a NSAID and it is mainly used for arthritis. Studies have shown its easier on the digestive system.
I can see you've tried some natural things. I have done a lot of research regarding natural treatments for endometriosis so happy to share if you send me a private message.
Thank you for the advice, Im already considering complaining to NHS England.I will definitely DM for advice on natural remedies, never had much luck with prescription meds to be honest, thanks for sharing x
They do sometimes intervene, I was trying to get treatment for someone else a few years ago. Day after filling in the form had a phone call, following day a call from the manager of the department and couldn’t sort an appointment quick enough 😂They’ll probably be bored at the moment as well.
There's some ambiguous statement on there about if it's a complaint they can't handle it. But then it says if enough info is provided they are more likely to do something. Glad to hear they do intervene!
I’ll be repeating, for me this time, if the local hospital doesn’t pull it’s finger out 😂 plus’s CCG, NHS England, GMC and gynae society. How are you doing?
I'll bear that in mind - useful to know, thanks 😊. Do the GMC ever do anything? They only seem to care when a doc is seriously negligent. They don't seem to care when the doc is inaccurate and useless without serious negligence.
I'm hanging on in there, on surgery list with a colorectal surgeon but not sure of the date yet. At least thankfully it will go ahead because he's a cancer specialist. Alternative medicines and over the counter natural remedies are the only reason its bearable.
I think they’ll care that I had a major operation without knowing the facts beforehand, the notes are totally lacking much about endo. I’m having a battle with complaints and not backing down. She said today they are looking to see about a different gastro, she’ll get back to me Monday. I’m trying really hard to give them a chance. I’ve emailed gynae sec to warn her that I’m not getting very far, etc. He is a really good surgeon, but has a bit of a happy go lucky attitude, not a bad person in the big scheme just thought he could do op on his terms.
I keep doing a bit of painting raised beds as looking really tatty. Just having a lay down.
All we want is a life and doctors don’t get it, it’s crazy.
I'm so glad you're not backing down. Good luck with it all! You're right, doesn't matter how much they've read they will never understand! This is a major part of the issue, its almost like we aren't real people.
I hear you and your suffering and concerns are all valid.
I know what this Trainwreck of a system is like for women's health because every time it seems like I might be getting somewhere the train breaks down again. So I understand your concerns about wait times and in the meantime being left with nothing that works or is suitable for your needs. Throw Covid into the mix on top of an already failing system and there are so many of us left with no action and deaf ears. When in pain day in and day out and symptoms that just continually get worse it can be so hard to find something positive to focus on when there are no definites as to when x,y or z will occur.
I know it isn't an ideal option but is there any chance of getting a second opinion from another GP in respect of what can be done while you wait? It sounds like you have explored many options but perhaps you may get to see someone with a more sympathetic ear or experience in what this is really like and what other options are available to try and hopefully hell limp you along to when you can be seen.
I wish I could offer something more, but the truth is I've lost most of my faith in ever getting any proper help at this point. I was referred to a BSGE centre end of 2017/beginning of 2018 (after no help via the gynaecology referral I was seeing) and due to a string of issues I still have not had an appointment with a consultant from the centre other than to have a telephone conversation about my complaint via PALS and a plan to see me last November which was thrown out the window due to Covid and they are unable to tell me when that might change. There is a book and a half in between those two points, but the important thing is I remain no further ahead. The small saving grace has been being able to receive care with a GP who has listened along the way and worked with me to find options that help treat my symptoms in the meantime. They are not a solution but atleast they are something.
I truly hope you can get your MRI scan sooner than later and see a consultant soon after so you can get some where ASAP with treatment that helps. In the meantime I hope you find someone willing to offer something that can help manage your symptoms that isn't just represcribing things that have already failed to help in the past. You deserve and have a right to be heard and offered alternative options.
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