Disappointment in the healthcare in the UK - Endometriosis UK

Endometriosis UK

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Disappointment in the healthcare in the UK

Fooofs91
Fooofs91

Hi guys !!! I am here to rant Because I am really disappointed . A few months ago I had a very random incident where I woke up at 6am in the morning needing to vomit ( I rarely feel sick) so this was strange, this was accompanied by an excruciating stitch pain in my groin , it was so intense I could not breath . I was in so much shock I picked up my phone that was beside me and attempted to call an ambulance but a family member told me it was not a good idea due to covid . Anyway after an hour of laying completely still and struggling to breath the pain got slightly better but NEVER went away infact it’s sooo bad I can’t walk or sit for long periods of time !! I had an ultrasound at A n E which showed nothing and having been diagnosed with endo I know that an ultra sound shows NOTHING. Anyway to cut a story short I feel like I am going back to a dark place in my life where doctors didn’t take me seriously , which involved three years of suffering before agreeing to put a camera inside me. My doctors aren’t of taking me seriously I have been given tramadol to take daily just to be able to get out of bed . I have attempted to get a referral to my original surgeon but due to covid it’s taking longer than usual and when I call you ask when I will expect an appointment I am spoken to very rudely as if I am asking for too much !!! This makes me so upset I have served the national health service since I was 16 years of age I am now 29 my entire family members 6 of us work for the NHS as healthcare professionals . I just feel like it’s so unfair that I am always treated like I am asking for too much infact I had a doctor recently tell me why would I refer you for an MRI? I am in agonyyyyy I relay on opioids to walk out my door . The strangest thing is !!! This Feels nothing like endo , I know my body so well and my endo pain normally flares around ovulation and hot baths relieve me but this pain is soooo constant so painful and nothing relieves it apart from opioids . They just think Becuase I halve endometriosis I just have to accept it as my life and take pain killers . I’m so upset I can’t even work and I have literally had to use my savings to get private consultations and an MRI. I am feeling to get healthcare abroad Becuase I literally feel like here in the U.K. it’s so hard to be heard and it’s not right there are NICE guidelines now to help people with endometriosis .

28 Replies
oldestnewest

So sorry to hears this!!!! I am 30 years old, female in the UK. Feel constantly guilty for having endometriosis. Worry that I am going to get fired from my job for having so much time off. Feel like nobody understands because I don’t know anyone else my age that has chronic health or chronic pain conditions. I feel your frustration and pain. You are not alone. Someday and somehow, endometriosis will be taken seriously. We need to keep talking about it and make sure we are heard. Sending you lots of love. X

Fooofs91
Fooofs91 in reply to EndoEffect

Yes we are not alone . Yet we are treated so unfairly thank you for your lovely message xx lots of hugs

same here! NHS gynae refused an ultrasound and told me she was 90 percent sure i was ok and at my ripe age of 32 at the time i should be having babies ASAP and not ultrasound for endo. She wold me to go speak to my husband straightaway and start trying to get pregnant. I had to stop myself from telling her where to go lol Luckily i had private BUPA insurance from work so had 2 laparoscopies. Now almost 3 years later back in pain and waiting for an appointment at an NHS endo centre in Herts. Will see if that's any good, if not then it's back to using private insurance. Maybe try going on the pill to help with pain? I hope you will get better x x x

Fooofs91
Fooofs91 in reply to hilkora

Thank you so much for this message ;/ it’s so so so sad and frustrating I just received qlaira for the pharmacy I heard good things about it!!! I will start today while I wait for the MRI I begggged for even privately it’s so ridiculous I can’t believe I m going back wards xxx sending lots of love to you 😘😘😘 I think I will consider private insurance too xxx

hilkora
hilkora in reply to Fooofs91

I've tried a few brands of the pill (combination and progesterone only) along with mirena and vaginal ring but none agreed with me sadly. I'm going to look into bio identical progesterone and possibly hysterectomy as my next options. Private insurance may not cover endo on new policies as it would be a pre-existing condition in your case. I was lucky to get my insurance before being diagnosed. Funny how pregnancy 'cures' endo! I have stage 4 endo plus adenomyosis which makes it impossible for me to get pregnant, IVF only. Not a fan of kids so its ok lol x x x let me know how you get on with the pill x x

Fooofs91
Fooofs91 in reply to hilkora

P.S I was told to get pregnant tooo by a doctor last week she said it was the “cure” I just stayed quiet I honestly have had enough of the lack of understanding out here xxxx

Hugs

Sorry you’re going through this, you must be very disappointed in the system, more so than most of us as it’s not the service you’d show others.

You know your body and an MRI would be a great idea. If you can use the online form for GP, you can write symptoms/reasons, much harder to ignore 😂

Fooofs91
Fooofs91 in reply to Moon_maiden

It’s just so refreshing to hear someone say “ you know your body “ thank you this is all I need to hear sometimes I have actually got a private MRI I wasn’t going to go down without a fight the doctor finally referred me for a private one so now I will wait and see xxx lots of hugs

Moon_maiden
Moon_maiden in reply to Fooofs91

Good luck, let us know how you get on.

I only got answers when I went private. GP surgery is determined to bankrupt me 🤣. I referred myself, but it wasn’t through insurance.

Fooofs91
Fooofs91 in reply to Moon_maiden

Thank you , I will for sure keep you updated xxx I can imagine money pays for answers or Someone to listen to you it’s so disappointing . It’s absolutely unfair . I am glad you did what you had to do and I am very sorry that you have to pay for help . I really want to set up my own charity at this rate xxxx

Do you know where they found endo when you were diagnosed and what stage? This sounds very much like a ruptured cyst - did you have endometriomas? I had a large one rupture and the pain was sudden and excruciating and like you I had to remain motionless for several hours until it finally subsided. I had an acute abdomen - went as hard as a board. Endometriomas will usually be associated with adhesions especially when they rupture and your ovary might now be stuck down which could account for your continuing pain.

Fooofs91
Fooofs91 in reply to Lindle

This sounds exactly as I thought !!! I was checked for endometriomas and they found nothing on the ultrasound , no leaking fluid either or adhesions during an ultra sound or pelvic exam . I have stage 3 endometriosis and it is on my bladder bowels and uterosacral ligaments ;/ my pain is every single day except my period !! When my period comes all my endo pain disappears it’s so bizarre and this pain remains it’s horrible . I just want another lap to have a look inside but I can’t even get that xxxx

Lindle
Lindle in reply to Fooofs91

Are you under a specialist endo centre in tertiary care and are you in England?

By the way ultrasound is excellent at detecting deep endo but only if done by a specialist sonographer.

If I were you I’d contact PALS. That seems to be the only way they listen to you unfortunately. Women’s pain is apparently normal according to the NHS. I refuse to accept this and nor should you.

Fooofs91
Fooofs91 in reply to LA_LA

I will look into this thank you ! I really had enough I don’t deserve this none of us do ! Infact my mental health has deteriorated so much due to being in pain for so long without reason this could all be resolved simply by a doctor who took an oath to care for his/her patients and to take them seriously xxx

So sorry to hear this.

I can totally relate to and it makes me so angry about the way any of us with endometriosis are treated by the nhs. It is absolutely disgusting!!

Because of their lack of care for years and years I will never have children.

Telling me I had constipation or imagining things etc etc when infact 13 years later I was diagnosed with significant stage 4 endometriosis and adenomyosis which has obliterated my insides.

Now after struggling working for 18 years I can’t work either!

And even after diagnosis any trips to the hospital and sometimes gp are insulting and a waste of time.

I ended up having to go privately which again is completely awful to have to do that and pay our own money.

Some employers have private health insurance schemes (luckily mine did and I was working at the time) or you can take out a policy for about £40 a month. Ideal time to take one out is when you don’t have any open referrals.

Other option is to pay £150-£200 just for the initial private consultation which could be done within days and then fast tracks a treatment plan which can usually be done on the nhs.

I know it’s a lot to ask but in my experience it was the only way to be listened to, taken seriously, investigated thoroughly and treated with care.

Best wishes to you xxx

Fooofs91
Fooofs91 in reply to Lily1986

Thank you so so so much for this information and i am very sorry you have had to experience all of this ! My heart completely goes out to you and I completely understand how you must feel . I really wish that you feel better . I am definitely considering to take out private insurance but after this episode is cleared ( God knows how long it will take ) delaying treatment can destroy a woman’s fertility it is such a delicate part of the body I feel like having a sexually transmitted disease is taken far more serious and I understand it’s a deadly infection but why can’t we be treated the same . Both can lead to prolonged damage to a woman’s delicate organs it annoys me so much xxx I wish I had opted to go on private insurance earlier . I also really want to see doctors abroad I have heard so much about doctors in Germany I know woman who have been taken really SERIOUSLY over seas and treated like human beings rather than hypochondriacs xxxxx

Lily1986
Lily1986 in reply to Fooofs91

Aw thank you so much and the same back to you xx

You are exactly correct, and also the sti’s don’t cause the disabling pain like endometriosis. The pain is excruciating, I’ve broken both legs badly in the past and it barely hurt me as the endometriosis pain is so so much worse.

Apparently the results of the Appg government inquiry are out on 20th October. Think there’s a link on endo U.K site for anyone that is interested to watch it. I’m praying that this will be the start of big changes but not getting my hopes up.

I was just saying to my mum the other day that Germany and Australia seem to be way ahead with their treatments and knowledge. I might research how much it costs.

Good luck and wishing you some pain relief soon - I will follow you now xxx

Stay strong and keep fighting. I’ve found the only way to get listened is to keep nagging. Ignore the sly digs and tutting from receptionists or nurses, it’s your body and health and unfortunately we have to fight to get heard. Many GPs are sexist and think we are making it up, plus they don’t have a clue. I’m still waiting for an apology from mine! Also I was told by my male GP that after first surgery my endo was cured!! Also that endo can only be found on reproductive organs etc. Keep strong 💪 I paid £150 for initial appt with endo specialist and I cried the full appt as I was finally being listened to!! Is there any endo specialists in your area? x

This brought tears to my eyes honestly . I have also been in a situation where I have cried infront do a specialist becuase I was so overwhelmed that they wanted to listen to me , this is the doctor I am waiting to see on referral she was my initial surgeon . Her secretary refuses to answer my calls and emails I am trying to get booked in all I am being told is covid -19 excuses it’s ridiculous xxxxx

That’s awful, to be refused to be heard is disgusting. But stay strong and keep fighting, you have plenty of support here xx

I'm so sorry you have experienced this, unfortunately I've had pretty much the same experiences. The last time I attended a&e during a horrendous endo flare up I was asked if I was experiencing emotional problems and imagining the pain! This was before he had even looked at my medical history or examined me. Women are not taken seriously by the nhs and it's despicable.

Fooofs91
Fooofs91 in reply to Tuxedo34

How dare they ! This is the last thing you need to hear honestly I wish they would create a device that would show doctors how much pain we are actually in so they may try to understand and be more empathetic rather than dismissive!!!! Xxx I know your pain sister I understand your pain and it’s never your imagination

Tuxedo34
Tuxedo34 in reply to Fooofs91

Thank you so much, I really appreciate you saying that. I'm so sorry about your experiences and I hope you have understanding, support and pain free times ahead of you xoxoxo

I’m so sorry you’re going through this. It is not okay! You’ll find around here that sadly that is the norm. It’s an average of 7 years from the time you start noticing symptoms to a diagnosis for Endo for most people. It was about 12-13 years for me.

It sucks and it’s not okay. But it’s the reality. I live in Canada. I was in a car accident 5.5 years ago and my gp at the time missed it for a year. She got sick of me being in her office every week and that’s the only reason she referred me out to a specialist. I was told 2 years later that there was nothing more that could be done for me except pain control. I had to go to a private health care facility to get proper treatment, at $250 a visit (it’s been 3 years now). It costs us $3500 a month on medical bills. So I am saying all this because no health care system is perfect. I’m not saying you shouldn’t feel mad and angry. Just know that it’s not you. I feel like our medical system on a whole is lacking of chronic conditions knowledge.

I have three gynecological conditions: endometriosis, adenomyosis, and fibroids.

The best thing you can do for yourself is to keep trying. Be in your doctors face every week if need be. Start eliminating foods that cause inflammation in the body like diary, wheat/gluten, and sugar. Try and eat as organic and gmo free as you can. As well as removing processed foods. The other thing I highly recommend is a pelvic physiotherapist. They will give you specific exercises for your type of pain and issues.

Are you on any type of contraceptive? The biggest thing with Endo is that estrogen feeds it. So being on a contraceptive will reduce your symptoms and slow the growth of new Endo. You can take the pill back to back without it being an issue for your future fertility but the best part is you don’t have to be in pain every month.

Sometimes with Endo it likes to wrap around your ligaments and cause sciatica problems. Do you find you are getting leg and low back pain mostly? This is something the pelvic physio can help with.

Sending you lots of love and strength. You can do this. 💕

Fooofs91
Fooofs91 in reply to Noodle1984

Thank you so much for this lovely message . I was feeling very down today and it made me feel a lot better bless you . I am very sorry that it has taken you that long to be heard and I’m also sorry that it is so expensive In Canada to get treatment correctly . My endo pain is daily which is ridiculous I have tried so many types of contraceptives with fail. I have just been put on the mini pill to try and I am praying it works for me otherwise I am planning to get visanne from overseas hopefully until I decide to try for a baby Because the human mind cannot deal with daily pain it’s unbearable . I have completely changed my diet from my initial diagnosis to dairy free , gluten free and anti inflammatory thank you so much for suggesting it as well and it had helped me so much in the past manage my pain. This pain is so strange I can’t explain it , it’s as though I have had an injury inside my body from the episode of acute pain I experienced and it has never healed I can’t pin point it all I know is I cannot walk or sit for long periods of time without agony . I have to call my gp tomorrow morning Because I want to discuss exactly why he refused me an mri and why exactly it would be rejected Because really and truly if a patient claims they cannot walk or sit they should consider many possible factors of elimination before they just assume it’s my endometriosis . Also I will deffo look into seeing a pelvic pain specialist at this rate I feel I will try anything to alleviate any symptoms to free my mind from this torture xxxxx sending you lots of hugs and strength too

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