Endometriosis UK

Rant! So fed and down! Any advice? X

Iv been off work since April last year, my mates don't understand endometriosis, they didn't believe me at first, thought I was making it all up, so I lost contact with them. I have two really good friends and an amazing boyfriend. But I feel so alone...I'm in so much pain where I can't walk far, I'm constantly bloating, completely exhausted physically and mentally for not being able to sleep from the pain.

So I don't get out much.

I'm so frustrated with the NHS and my current GP, Iv just been pasted to one post to the next.

At 11 I started my period, I was being sick, in absolute agony for the first few days of the period. At 16 I got put on the pill to control my symptoms and it helped a lot. Every so often since I was 11 I would be in pain with either my stomach or lower back, I'd go to my gp and get told I'd have a bladder or kidney infection (whatever was hurting at the time) and this was happening 4/5/6 times a year (a lot of antibiotics)

At 19 I started my new job being a support worker for autism in adults, I started in the Feb...in April I was signed off work for a " kidney infection" I went to hospital cause the pain got worse, got told my bloods and urine was clear there no infection, Iv pulled a muscle (considering I didn't lift at work, the service users I worked with where extremely independent, so I knew it wasn't that) I went to see another gp and straight away she said it sounds like endometriosis (first time Iv never heard of it) from there I had ultrasound and blood test for everything possible just to be sure.

About July time I got told I had a muscle thing in my back muscular de..something (again I don't lift or strain my back) so I got sent to a specialist, tried to get me to do poses and movements to strengthen my back, things you can't do with a bloated stomach..so complete waste of time.

I then had my first gynaecologist appointment where I got told it doesn't sound like endo, but I'm under weight so could be that but will do a laparoscopy just to be sure ( so being judged on my weight)

I had the laparoscopy on 14/12/16 and of course I had endometriosis, had the coil fitted and told it will never grow back (recently found out that it's a loud of poop)

I was pain free for 3weeks, then bleeding, pain, bloating. Everything came back... had my 2nd gynaecologist appointment,got told it can't grow back and it's my weight, I'm anorexic ect ect, had to have an emergency ECG

Of course this was very stressful and upsetting for myself and family as we knew I wasn't anorexic, doctors seem to forget reality, when your real with a flu or whatever, you don't feel like eating...endo is the same but there's no stop, feeling sick for being exhausted and from the pain, so appetite out of the window...but of course I wasn't beloved by doctors, I had to see a anorexic specialist...after an hour meeting on my own with strangers knowing the ins and outs of everything said there and then I didn't have an eating disorder of any sort.

Iv now FINALLY been referred back to the gynaecologist for endometriosis...but not till November

I'm not a doctor but I know my body, it's so frustrating that doctors do not listen and lie to people about endo, it can grow back at any point... I'm

Having the coil out next week as it's not helping me, I'm still bleeding and being sick on the first few days as it did before I got put on the pill, so having it out and going back on the pill to November..

Rant over😂

Emma

Xox

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Hi Emma, sounds like you've had a rough time of it 😞 it's very interesting what you wrote about the coil, because I keep getting leaflets given to me and doctors asking me if I'd consider it and I've always said no - I couldn't stand the pain of inserting and removing it. It makes me whole body cringe 😩

Glad you've finally been transferred to gynae, and I hope they sort you out ASAP! X

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Iv heard some good and bad things, but when the doctors tell you the coil stop endo from growing back you believe them...i had mine inserted during my op, so abit nervous about next week haha xx

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Hello Emma, if ever there was a space for ranting about Endo and the general apathy of medical professionals, it's here! ❤️

You are FAR from alone in this, my dear. I understand all too well about the lack of a social life because no one freaking understands. It is impossible to make long term plans as you never know from one day to the next if you'll be well enough to leave your friggin' bed! And you're absolutely right: people just do NOT understand. Even if you try and explain it to them, unless hey have first hand knowledge of the disease, or have watched someone they love suffer through it, then people just don't have a clue and seem to have a hard time empathising with us. After all, there are no outward signs of Endo, no visible wounds for them to see; it's all locked inside of us.

And I get you completely about even walking - I'm from NYC, a city where people move quickly. Since everything has imploded in my personal health, I've legit had to modify the way I walk. I can't take long strides because it feels like I'm pulling rubber bands in my pelvis and they're about to snap and, OH, does it hurt! Plus, I can't keep a straight spine now (I also have scoliosis , had to wear a back brace as a teen so I am trained to have perfect posture), so I literally have to kind of hunch my lower back when I walk so nothing is pulled too much inside me.

And people don't understand that. They don't understand why you suddenly can't keep up, why you walk like a granny with osteoporosis and can't even straighten up, why you're so careful about even standing up from a sitting position.... they just don't see it.

And the doctors, well, there's a damn good reason NICE had to go so far as release those new guidelines for doctors in the U.K. a week or so ago... I started my journey with the doctors on January 22nd of this year after almost 20 years of awful periods and growingly constant chronic pain through my body. It was only in my early 30's that I finally broke and went to the doctor, once things got so bad that my life was pretty much being derailed and I couldn't keep pushing through. So from January to now, I am FINALLY scheduled for my lap - in December. They've wasted the bulk of the year telling me to just wait a bit at every step of the way. It is utterly infuriating. How the hell are we supposed to LIVE and have a life when we are so ill all the time and the best suggestions we get is to take some pain meds and rest?!

We so understand, Emma. Rant away. 😉

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Can't believe they've wasted a whole year on you having a laparoscopy! Horrible thing is if you had cancer you would of had your op by now, cause ours isn't life threatening they just leave, despite the pain and our mental state!

I hope it all works out for you xx

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You're so right. If it were terminal, we'd not be ignored, but because all Endo can do is make you lose your job, your partner, your friendships, your sanity, and generally sabotage your quality of life, we just get to wait.

After all, it won't kill us! 😉

Hang in there, girl. ❤️

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Hey Emma! I'm from the uk and can completely relate to your struggle. I wasn't until my late teens I started to feel pains in my stomach which just got parred off as ibs (shock) but through these issues I developed social anxiety and for a good few years was really low and frustrated, I constantly felt like a hypochondriac. But the pain isn't in your head, be strong and firm and really push for a second lap or alternative medicines. I had my lap yesterday which they removed a left ovarian cyst which was close to rupturing and they removed the endo they manage to find. We just got to be strong minded and know that those who support you are your real friends, don't at all stress about those social situations. We do what we can do and sometimes just accepting that you do have chronic illness and your not just being "lame" or antisocial it's a lot easier to not feel guilty or a burden. I'm glad you got the the coil removed. I am spectacle about conceptive things as I've heard they can help but also can worsen. Just keep strong and know that you're not alone in this! This page is to get the sympathy we deserve so you rant away :)

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Yeah Iv had IBS mentioned to me before, it's like they go for the easy options, like with me and the anorexia, thin and pain..there's no other symptoms but they still jump on that band wagon, I know people with anorexia lie about what they're doing, but when I not I'm not doing any of it and they keep going on about it, I even had a gp called my mum in-denial as she said I wasn't doing it either. It's disgusting how endo patients are being treated, it's like we're not believed.

And yeah thank you for that, just get so frustrated sometimes, they can't see the pain or anything. Outside we look normal so no one gets it

Xx

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Hey Emma, you are definitely not alone and like everyone else has said this is the place to rant! I'm in a similar position have been off work since January - was told all sorts as lost 2 stone quite quickly - eating disorder, I'm fussy, psychological, not adjusted to climate - (I went travelling last year but am English 😂) IBS, tiredness 🙄. I even had one consultant when discharging me from 5 days in hospital asking my living conditions which I thought was nice as he was checking my situation for when I got home and when I said I live on own he said that perhaps I am just lonely - unbelievable!!!!! I've since had 3 laparoscopy's - first one there was too much to take out. My advice would be make sure you find a surgeon that does excision NOT ablation as this if done well can give you longer before it grows back and hopefully make you pain free. Keep on pushing your Dr and gyny - I saw sooooo many Drs and consultants before being taken seriously. One gyny asked to use my mobile phone torch to shine in me 😂 You know your body better than anyone. Good luck! And you will also get to see who your true friends are 😊 X

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It's nice to know it's not just me their playing around like but horrible that your going though it aswell..it's scary that some of theses have passed and become doctors😂 never heard of being in pain cause your lovely😂

What's the time frame between your laparoscopys? I had mine in December, I don't no if they'll do another so soon? (Well it's not soon but you know what I mean)

And thank you! I hope your okay xxx

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I know it's crazy hey. I think sometimes I'm more knowledgeable than my Dr's just from doing my own research! If you haven't already I'd deffo get the book by Dian Mills - was recommended by so many people and it's great to help explain & understand things and manage pain naturally. Lol yes I'm lonely so am in pain 🙈 I had diagnostic lap in March on NHS but got fast tracked by having a private appt as just kept ending up in hosp and was told it would be 9 months for gyny referral on NHS. Then had excision op in April which was extensive as they found severe Stage IV endo and bowel and ovary was stuck to pelvic wall. I started getting better but then pain came back so 3 weeks ago had another lap and bowel and both ovaries stuck - this is rare though and just unlucky. No more endo. Working with nutritionest is so helpful as mine has picked up on lots my Dr has missed.

They can definitely do another one - I've had 3 in 5 months - obvs not recommended but one since Dec is fine. Xx

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It is really frustrating. People are judged on the way they look but obviously they can't see what's going on in the inside.

I suppose like anything you try and explain how endometriosis affects you but unless they are in the same position they can't really understand.

It took me 8 yrs to get a diagnosis and was diagnosed with a whole host of things before reaching the right one.

We all know are own body and when there's something not right we know.

I have other complex health issues to deal with aswell as the endo but like you feel so alone.

I haven't worked for a while now and just feel like all my dreams and hopes have been taken away from me.

I've always been such an outgoing adventurous person but now I'm just I'll constantly.

Hope you get the treatment/ support you need. Big hugs x

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Oh god that's horrible! Message me whenever. Hope your okay xxx

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