Heartbroken

[Hello33]

Hi everyone I'm new here! I'm just in so much shock reading peoples stories. I never realised how many people were left in pain with nowhere to turn I just thought my drs hated me! A bit about me... I was diagnosed with pcos when I was about 13 and along came depression and anxiety and being bullied for having excess facial and body hair. In my early 20's I had a ruptured cyst that turned out to be a large growth and I found out years later that part of my ovary was removed in the process. 5 years later I had uncontrollable bleeding had to have polyps removed from my womb they gave me a coil but I swear it made me go a bit nutty, when I went for a follow up I explained how i felt I even said I felt suicidal at the time of the month, she just looked at me like I was an alien so I just put up and shut up. Now I have be in a lot of pain I had to keep going up the Dr and a and e before I was finally given an mri which showed deep infiltrating endometriosis, different types of cysts, a fluid filled fallopian tube and a blood filled fallopian tube, a lesion and free fluid in my pelvis. There is a chance my fallopian tube can rupture but no one seems to care Dr has washed there hands of me and hospital are not helping either! Going through pals even they are ignoring me I feel lost, unheard and I'm seriously considering suicide and clearly that's what they want! I hope everyone gets the answers they are looking for. Xx

[Moon_maiden]

Hi

Sorry you are feeling so bad, there’s probably not many who haven’t felt the same way with this disease and lack of care. Ignoring us doesn’t make it go away.

What’s happened after MRI, is the consultant an Endo specialist? If not, they or your GP need to urgently refer you elsewhere.

A&E are just ridiculous with dealing with Endo, I literally screamed at a junior dr once, they couldn’t check quick enough what to do 😂 ended up getting morphine. If you make enough fuss they can’t ignore you 🤣

[Hello33 in reply to Moon_maiden]

Hi thanks for your reply! Was given MRI to shut me up lol he was not an endo specialist but he was very good I had the mri done on a Friday and the results were back at my Drs by monday. I was given a general referal to see a gynecologist may of next year! Dr said they have expedited my appointment but hospital is saying they haven't not sure what to do now pals ain't even helping! 😥 I hope your journey is going better than mine x

[Moon_maiden in reply to Hello33]

Definitely chase it up and see who you are down to see regardless of when. It’s important the referral goes to the right consultant. The admin team choose which dr to send the referral to. The hospital don’t have to expedite but they have when GP has chased it up as urgent for me, but they know I don’t give up 🤣 unfortunately you have to keep pushing to get anything done. I’ve been given an appointment with pain consultant for next April, I have to contact GP for revised blood test as iron was low a few months back and I’ll ask them to give pain clinic a kick. All departments will leave x amount of appointments clear for ‘emergencies’ they don’t understand how much pain we are in and the effect on our lives 🤬🤣

I found paying privately to see a consultant paid off in that it was my choice who I saw, then he gave me the choice of going on his NHS list

[Hello33 in reply to Moon_maiden]

Yep definitely considering going private! I wish you all the best in your journey!

[Bakewey]

if you can afford to, go privately and ask someone who has time to care what they suggest you do.

Your story is all too familiar, and unfortunately it appears that a few hundred pounds can make a difference to the support given.

This road my be long and have many bumps, but on the bad days check in here and it will appear a bit brighter.

If you are unable to fund a private consultation, I’d suggest calling the local gene department (hopefully they are endowed specialists) and speak to them directly.

If that doesn’t work then register at a different doctors as eventually you will find someone who cares.

Wishing you some success soon.

[Hello33 in reply to Bakewey]

Thanks for your reply I am thinking about going private as feel this is the only solution. I was having a bad day and feel a little brighter now 🙂 and the fight continues x

[Naladog]

Has anyone reached out to legal professionals who specialize in medical negligence cases if PALS is of no help? Lawyers who do not charge unless they win the case? Perhaps, and unfortunately, that may be the only way to effect change.

[Hello33 in reply to Naladog]

Hi my mum said she is going to take it further even if we decide to go private for all the women out there that are experiencing the same poor care and being told it's just your period!

[ClaudiaGrace]

Hi, I’m so sorry to hear you are having such a tough time with it all. It’s certainly not an easy journey and it sounds like you’ve really been through it. I’m also really sorry to hear that medical professionals did not take your mental health concerns seriously, unfortunately some of them seem to be ill prepared to support people in this way. It’s good that you come here to talk to people facing similar problems. Are there other people (family/friends) you still feel you can reach out to for support?

Can I please recommend reaching out to the Samaritans on 116 123 if you experience suicidal ideation again, or texting SHOUT on 85358. They will be able to provide you with a space to talk any time of the day. Please do also take yourself to your local A&E if you feel you are at risk of hurting yourself. You are not alone in feeling the way you do and there are people who can help.

Regarding your endometriosis, do you know if you have been referred to the endometriosis centre in your hospital as this could be a first step, to ensure you’ve got the right professionals supporting. And are you taking any medication for it currently?

In the mean time you can make changes to your diet and use pelvic floor stretches and yoga which may help you to control your pain. Try eating lots of anti oxidants, a good variety of veg and I think chloestevensphysio talks through the pelvic floor stretches.

[Hello33]

Thanks for your reply yes I have my mum and a couple of close friends I can talk too. I have not been referred to a endometriosis centre I didn't know that was a thing. I try to eat a healthy diet I mean there is room for improvement lol however, at the moment I'm off my food I've lost nearly 2 stone I've always struggled to loose weight. I'm not on any medication just co-codamol for the pain. I had the coil but that didn't make a difference I've recently had it removed.

[Finechina]

Oh gosh, please do something to change your viewpoint. The support groups, another reader sent, is worthwhile trying or maybe if you are in employment do they have well being support? I attended the endometriosis uk support group in my local area, that was really useful.I can assure you, once you have the appropriate treatment you should feel so much better. Unfortunately it just getting there.

I had a coil for six months, which provided no benefit and made me feel really depressed. My friends and family were very concerned by what I was saying. Do you need to have the coil?

Consider your diet to foods that offer anti inflammatory benefits. I found diary, gluten and alcohol made it worst so avoided where possible.

I used a TENs machine at really bad times, that eased the discomfort greatly.

The GP should also be able to prescribe several different medications to help that will suit you.

I hear pelvic exercise is really good but I never tried it.

A friend of mine went to a private consultant, who has prescribed her a small dose of testosterone. Unfortunately, this is still in development in the NHS to prescribe.

To get any answers, tirelessly I think you need to keep presenting yourself at the GPs until they do something. I had a laparoscopy with ovary removal in November 2023, which made my pain worse, so this year I presented myself with the GP every 2 weeks for 2months. I was given an emergency referral to gynae in the end.

It's hard work but please stay strong. Wishing you the best and love x

[Hello33 in reply to Finechina]

Aww thank you my Drs have made it pretty clear they are not going to help I've spoke to the top woman that runs the surgery she told me to go pals. I've had the coil since my last operation it hasn't made a difference. I'm going to look into more support. I wish you all the best in your journey x

[Shabs2024]

Hi sorry to hear about your experience. Pals do help, did you put your complaint in writing? Put down everything about your journey, appointments etc. i had to open a pals complaint, Once you do that, you will receive a email with acknowledgment, also numbers of advocates in your area who help with such issues.

[Hello33 in reply to Shabs2024]

Hi no have not put it in writing have phoned them about 5 times the last person we spoke to said he will take it to his manager, not heard back yet. I will try and e-mail them and see if that helps! Thank you for your reply.

[Shabs2024 in reply to Hello33]

I would definitely put it in writing. They fobbed me of over the phone. But when I emailed them, they got back straight away. It was one of the managers, i got a appointment within a week.

[Marcia71]

unfortunately pals aren’t always the best as they don’t know the pathway for severe endo which is what the mri has shown. Your gp probably doesn’t even know the correct pathway so you’ll have to educate them. Tell them that deep infiltrating endo is considered severe and must only be treated in a specialist centre and these operate in tertiary care. Most gynae appts are in secondary care. The centres are accredited by bsge and so are known as bsge centres. If you go to the bsge website you can look up the accredited and provisional endo centres. Either can treat you so find the one nearest you and tell your gp to refer you there. Sending your mri results.

You can go to any centre you choose but often the nearest is easiest for appts. Most are on nhs and some are private but they will be very expensive.

As to the secondary question about legal action I looked into this but it’s very hard to prove that you’ve ended up where you are due to medical negligence or just the progression of the disease.

Good luck with your journey. It’s horrid but you can get there.

[Hello33 in reply to Marcia71]

Thank you for your reply! I will definitely look into this you have given me a better starting point than any Dr!

[BloomingMarvellous]

I’m truly sorry you’ve been so poorly dealt with and you are right it is heartbreaking 💔. There is a bizarre comfort in finding you’re not singled out for appalling treatment isn’t there?

There’s a great book called Unwell Women that explores the politics of all this and I have to be honest it made me feel incensed but also yup 👍 got the TShirt. Doesn’t seem to matter how able or not one is in speaking up, playing ball or not in getting proper care and it’s dreadful. So understand totally your frustration and horror. If you can manage go private and save your sanity as far as possible.

Going private got me a diagnosis after 48yrs but further treatment is threadbare for older women with Endo and adenomyosis so go for it whilst you have a proper chance of ongoing care. Get yourself educated -fast - to stand your ground and stop some of the nonsense that gets thrown our way. I like Heal Endo by Katie Edmonds and up to date copy of Nice pathway to wave at every opportunity.

Keep in touch with us and let us know how you fare.

[Hello33 in reply to BloomingMarvellous]

Thank you! Can't believe how nice people have been on here! It is a shame we are all in the same painful place but I have a small glimmer of hope and I'm going to hold onto that.

[Daisy_call]

hi there,

I’m not going to add to the good advice you’ve had already about tips to manage your endo, but suggest you might want to get some support for your mental health, and managing the frustration of chronic ill health and pain. You talk of suicide, please please reach out and find someone to talk to when you feel that way. There will be people who can help.

I have endo too, along with chronic pain and inflammatory arthritis. It’s pretty hard. Last year I reached the lowest point ever, I’d not felt so bleak in decades, I too had moments of wondering if there was any real point in carrying on. My pain, and my endo aren’t much better but my mental health is infinitely better and that’s left me in a stronger position to fight for myself. It shouldn’t be this hard, and just endo too, go to a doctor with any chronic condition and it’s the same. The NHS really lets women down badly!

My mental health improved hugely when I recognised and accepted that my health didn’t define me. No matter how doctors treat me, I’m worth more that they realise and they won’t make me think less of myself or my worth. I wish you some of the same strength.

Look after yourself, i promise it does get better x

[Hello33 in reply to Daisy_call]

Hi and thank you for your reply! I am trying to improve my mental health I have reached out to my Drs a few times over the years. I will be ok! Thanks again x

[Lynne_support Partner Endometriosis UK]

Good Afternoon,

I am so sorry to hear about what you have been experiencing, sounds like it has been a really difficult time for you.

Thank you for reaching out to the health unlocked community, looks like there has been some really good advice and support offered.

We a have different support services you may be interested in; you can find more information here: endometriosis-uk.org/get-su.... The helpline and webchat offer a 1:1 service, all our volunteers have lived experience with endometriosis. Here you will be able to explore your own personal journey and options in more detail.

endometriosis-uk.org/visiti... You should ask to be referred to an endometriosis specialist wherever possible. endometriosis-uk.org/seeing... you can find your nearest centre here bsge.org.uk/centre/category...

Although we cannot offer you any medical advice, I would also like to highlight the different rights you have a as patient within the NHS. This is the constitution for the NHS: The NHS Constitution for England - GOV.UK (gov.uk) it conveys the rights patients have within NHS care, as well as the pledged the NHS takes to protect its patients.

I know you mentioned you are in contact with PALs. You can also take this complaint further if you wish, by either getting in contact with your local IBC (which you can find here: NHS England » Contact your local integrated care board (ICB)), or raising it to the Parliamentary and Health Service Ombudsman ombudsman.org.uk/

Endometriosis is a condition where so many people feel isolated, this is just to remind you that you are not alone, and we are here to offer comfort and support. So please reach out to us, should you need anything else.

[Hello33 in reply to Lynne_support]

Thank you for all the information. I will do some more research! I received a call yesterday saying they are trying to refer me quicker but other women are in front of me and my Dr obviously isn't concerned as it was a general appointment even though my Drs is saying they put it through as urgent! No one wants to admit they are wrong and are trying to make me look mad. I'm trying to stay positive.