Help!!!: I’m literally going crazy and I... - Endometriosis UK

Endometriosis UK
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Help!!!

Lover124
Lover124

I’m literally going crazy and I feel like my body just really hates me. After my post the other day, I ended up in A&E last night after I couldn’t cope with the pain.....My bloods came back clear aswell as my urine which I knew it would so I was sent on my way.

With the consultant saying she thinks there’s a cyst on my ovary, or that there’s something wrong with my right ovary area....But because my bloods where clear they wasn’t willing to do anything else....So basically just suck it up butter cup and get along with life 🤦🏻‍♀️

I’ve done nothing but cry with how much pain I’m in, and I really do feel like my body is out to get me 😩

52 Replies
oldestnewest

I know how you feel - I’ve been on here almost every day since the weekend

I was in A&E last Weds and may go back but the dr never did anything just sent me off with codine

Lover124
Lover124
in reply to rossemma1

It’s driving me insane how they can just turn people away......I have to take 3 different types of pain relief just to get through work and even that doesn’t cut it!! I’ve had enough at how crazy it’s sending me

rossemma1
rossemma1
in reply to Lover124

Yep totally understand hun - like a say I’ve been on here as much as I can.

I haven’t got diagnosis yet - but I’m pretty certain something not right.

I’m feeling exhausted going to work I work in a supermarket and today I found it hard to stay awake - I’m currently in bed cause I feel sick, can’t watch tv.

My life is a mess too

X

Lover124
Lover124
in reply to rossemma1

I’m not diagnosed yet either. But after years of going back and forth to my Gp and always been admitted to hospital for “suspected Appendicitis’s” when I seen gynaecology in January they finally agreed it could be Endo.

Sucks though I’ve been in the worst pain lately, just had 2 weeks off work sick, but I work within the NHS so at a time like this you can imagine how stressful it is.

I hate how much it affects our life’s, I hope your well soon xx

rossemma1
rossemma1
in reply to Lover124

Thank you - I’ve now got brown discharge so praying I don’t get a period that’s all I need.

I’m on opioid ( meptid ) and codine and still not much use.

Can’t watch tv finding work really hard but can’t have any more time off

Lover124
Lover124
in reply to rossemma1

Yup I can’t have any more time off either.

I’m currently on Tramadol.

Hopefully the pain eases for you soon and you can get some rest x

rossemma1
rossemma1
in reply to Lover124

Thank you and you

I don’t know whether to go back to A&E on Thursday my day off but don’t feel very happy considering the way I was treated last week.

You know where I am if you need me

xx

Lover124
Lover124
in reply to rossemma1

Yup that’s why I didn’t want to go back yesterday because I was treated horribly the week before. If you feel like you can’t cope I’d definitely say go if your Gp can’t do anything or you can’t cope at home. At end of day they have to do something, so tell them your not leaving until they help you x

rossemma1
rossemma1
in reply to Lover124

Ah sorry definitely going now

But just read what you said about working in Nhs do you have any inside knowledge of when out patient appointments will restart

Lover124
Lover124
in reply to rossemma1

I don’t no I just know that it will be a few weeks yet as where only doing really urgent referrals x

rossemma1
rossemma1
in reply to Lover124

Ok yep understand that

So how can I go about getting one as my GP won’t do one and Gyne secretary says mine isn’t in back until mid May x

Lover124
Lover124
in reply to rossemma1

I’d say it all has to come from your Gp do referrals and if you go back to a&e just tell them about the pain your in and that you can’t cope with it at home with your painkillers x

rossemma1
rossemma1
in reply to Lover124

Also don’t know what to say it did go back to A&E

B3CCY
B3CCY
in reply to rossemma1

Is your GP doing anything for you? Rather than going to a and e due to the covid they are limiting patients at the minute? Xx

I'm so sorry to hear this I honestly went though the same thing last night in a&e ! It Crazy how our pain isn't listened to ! I hope someone listens to soon ! Not body should be going though pain . But I hope you feel better soon x

Lover124
Lover124
in reply to Vanreid9

I literally was told your bloods are fine there’s nothing we can do it’s time to go home 🤦🏻‍♀️ I’ve just had enough off it affecting me so much x

Vanreid9
Vanreid9
in reply to Lover124

I'm so sorry it is horrible that is exactly what they said to me ! But pain isn't normal and make sure you fight to be heard ! I hope you feel better soon and keep safe xx

Sorry you’re going through this and having poor response and treatment.

Reading all the messages to your post, feeling particularly crap today and even wondering about A&E myself. I know they’d probably say the same thing as you’ve experienced.

I’d love to sit there and go, I’m not moving until you’ve taken the lot out, probably get removed by security!

My husband called 999 twice in the last month for me, the pains were excruciating, like nothing I’ve ever experienced. Could of been a burst cyst, nasty UTI, apendix burst!! We know it’s endo, when my husband told one nurse we think it’s endometriosis she rolled her eyes and none of them would listen to us.

Like you all I was ignored for hours given paracetamol and sent home. I then called my GP and demanded morphine, so got a prescription, with that I knocked myself out for 3 days solid got some rest and also went on the combined pill, the combination has taken a month to settle.

I’m now suffering from bladder pains daily so about to msg the GP for that!

It’s awful, constant and I wanted to say hang in there. Xx

Lily1986
Lily1986
in reply to Whoisthis

God it makes me so angry reading these posts.

They have been the exact same every visit to A&E.

How dare they treat us so badly when we are in an unimaginable amount of pain.

Let’s just hope this government inquiry into endometriosis (better late than never) has a lasting outcome and nurses such as the ones that rolled their eyes feel bad about not listening.

Results were meant to be out In July but it’s been delayed now until later in year. Xxx

B3CCY
B3CCY
in reply to Lily1986

I would not wish my endemertiosis on anyone else especially nurses caring for us xx

Lily1986
Lily1986
in reply to B3CCY

Yeah sorry I wrote that badly and I have now edited it. I meant the lack of understanding amongst nurses that haven’t looked after me in the past would now get it (as in understand) having done nursing myself in the past but certainly wouldn’t wish this disease upon anyone x

B3CCY
B3CCY
in reply to Lily1986

I understand your frustrations however as a A&E nurse with endemertiosis I found it a little insulting you would class all nurses in the same way. It is unfortunate you feel that way about you care, I can reassure you I care for all my patients regardless of their condition. Having lots of experience with endometriosis personal adn Medically I treat these patients with a little extra TLC ❤️ xx

Lily1986
Lily1986
in reply to B3CCY

I’m sorry I honestly didn’t mean it like that. I meant “nurses such as the ones that roll their eyes” and then send you home when you mention endometriosis. Yes I have had terrible experience of being dismissed for 13 years on hundreds of hospital visits but I do know 99% of nurses do an absolutely fantastic job and work so hard and I admire you for your job! Sorry if I offended you it’s the last thing I wanted. Xx

B3CCY
B3CCY
in reply to Lily1986

Aw bless you x you have not offended me at all I just get upset when people are not treated as they should be as I work very hard to lol after people. I hope you get sorted soon and stay safe xx

Hey.

I’m so sorry you are in so much pain.

Reading your post makes me so angry and mad at the lack of care or support we get from almost any medical professional.

If they think you have a cyst and you are in agony they should bl**dy well investigate it.

I hate how they treat us like we don’t matter and we are expected to just live in such horrendous pain.

I guarantee if they suffered one small proportion of the pain we experience they’d do something about it.

I would personally be extremely assertive with your GP and demand being referred to a endometriosis specialist gynaecologist.

Or if you were able to afford the initial £100-£150 initial consultation fee to go privately (some workplaces have insurance) it is well worth it, it gets the ball rolling and everything else can then be done much quicker on NHS.

I was ignored by GP’s and had countless trips to A &E for 13 years.

By the time I did see a doctor that listened who got me investigated it was discovered I had endometriosis and it was stage 4 and had destroyed any hope of having a child and even IVF had a less than 6% success rate. Now i have had 4 operations and it keeps returning worse each time and has damaged my nerves I’m in absolute agony almost every day.

I wish you the best of luck xxx

Whoisthis
Whoisthis
in reply to Lily1986

What’s the link to keep posted with the government enquiry?

The anger is real as I’ve been through the system waited 2 years for NHS and thank god I did as during that time I researched ablation vs excision, I’m now on my second private consultant excision specialist and waiting for lockdown to end so i can go and get my surgery.

The worrying thing is the the NHS are still preforming laser/ablation knowing it’s causing more damage. Even more worrying was that my first private consultant put forward a plan of action that wasn’t right for my case, so I paid 200 for poor advice. They really aren’t all fully trained even the private ones 🙈

The 999 flare was like a sharp pain I’ve never felt in all my years of endo flares, I still have no idea what it was? But I know I have a cyst, so I’m actually thinking it was a burst cySt?

You do get to theta point where you feel you know more than the drs!

Lily1986
Lily1986
in reply to Whoisthis

Oh god, it sounds like a burst cyst or I had absolutely horrendous pain when it was attaching my womb to my bowel.

Yes definitely true that we seem to know more than most medical staff about the condition.

If it a condition men suffered with it would be totally different!

The links are:-

endometriosis-uk.org/news/u...

And

endometriosis-uk.org/news/m...

I follow endometriosis uk on Twitter which has some updates.

And also if you type uk government endometriosis inquiry into google it comes up with quite a bit.

If the Appg survey is still available to complete, I would definitely fill it in. Xx

Whoisthis
Whoisthis
in reply to Lily1986

Don’t get me started on men!!

I said to my husband as I can’t have sex, if he went to the GP and said his penis was broken And every time he used it he got cramps and vomited he’d be seen in a matter of days.

I’d love for a team of men to start going to GPS with our symptoms and see how fast they get referrals and what pain killers they get.

That would make for a very interesting and eye opening study.

Considering there is only one organ we have that is different to men it doesn’t half cause a gap in care.

Lily1986
Lily1986
in reply to Whoisthis

Very well said!!

Yes it would make a very interesting study and definitely one that should be done.

I can accurately predict the results. Xxx

Whoisthis
Whoisthis
in reply to Lily1986

Sorry also to hear about your fertility, message me if you’re any the name of my surgeon, he’s amazing and will fix all of this for you x

Lily1986
Lily1986
in reply to Whoisthis

Aw thank you. Please do message me the name.

Sadly I lost both my tubes and left ovary in last surgery so conceiving naturally won’t happen. Probably just as well as I’m now single Lol. Xx

Noodle31
Noodle31
in reply to Lily1986

The only problem is, you can't even get a private consultation right now, it isn't allowed. So even if you had the cash or got a loan...no luck. I'm waiting on my first ever lap (and first surgery ever) to remove 2 big bilateral endometriomas which were found on an MRI - scheduled for March and cancelled due to Covid-19. It all came as a shock as this year I have basically gone through scary tests and scans, and discovered I have stage 4 endo (which cannot be treated until I get a new surgery date) all to the backdrop of a pandemic. Everyone in the NHS was super speedy before the current situation, but I am now left genuinely terrified. One endometrioma was measured at 14cm, the other about 8cm...this is scary stuff.

I begged on my cancellation to be put on the pill to stop them growing, and they did for a few months, but they can't tell me when a new op will be as nobody knows. I am only 31, soon to be 32, want kids...I try to keep my mind occupied with other things, but I admit to being terrified. I also admit to really hoping against hope that all treatments for everything other than this horrible virus resume soon, even though I'm sure some people would consider that a selfish viewpoint. I would call it a human response.

It’s not selfish, a normal reaction. Although we understand the situation it doesn’t stop the feelings of wanting things sorted ASAP, don’t feel guilty for this.

Speak to your GP about the pill or other medication, service is still running or even the consultants secretary

Take care

One of my major issues is that all throughout the initial consultation process it was 'this is urgent' and then I was literally there, wearing my hospital gown, and they cancelled it because it was now 'not urgent'. It was urgent before, and remains so. I guess if you judge everything by whether or not you are literally on a ventilator, nothing is urgent - and I do understand this. I'm just getting rather annoyed with the current blanket refusal to adequately treat anything else...

That must have been hell, I think I’d have been a wreck, had to psych myself up as it was. Why yours was cancelled at that point when you were there is crazy, so sorry.

One reason I went private was to avoid possible cancellation.

I do understand to a point, don’t get some cancellations, especially cancer treatment as even medication seems to have been stopped for some.

My story gets even better - it was meant to be at the start of March, then changed, then changed again (a cancer patient - so I totally understand), then cancelled when I was there. Then it was reappointed and cancelled at the last minute again a couple of weeks later. All in one month. So I was kind of a nervous wreck by then, and together with basically being 'downgraded' it is not a good feeling.

Like you I understand that some cancellations are inevitable, it is just terrible luck and I wish they'd give some clarity.

I was a wreck when someone else’s was cancelled last minute, only found out when I called to see where to take them. God help them if they’d cancelled twice, obviously didn’t want to and put them in the private wing couple of weeks later.

So sorry they’ve put you through this. Would it be worth bringing it up with the hospital manager or PALS?

Hope you get the pain under control

I'm planning to gather all my info together and 'touch base' with the hospital within the next few days, because it really is a state of scary limbo to be in.

Good luck 🙂

Let us know how it goes.

Thank you, will do.

This is horrible to hear. I think we can all appreciate that the current health crisis situation but if I’m honest stories about endometriosis sufferers being ignored and simply plied with painkillers and discharged from a&e were common long before covoid virus hit.

The exact same thing happened to me about 2 years ago. I was in excruciating pain, couldn’t walk all of a sudden. Got taken to a&e and they just gave me painkillers, touched my abdomen said it wasn’t appendicitis and that my gp would have to refer me to gynaecology. Finally got an ultrasound referral and there was a 12x12cm cyst - they couldn’t even be bothered to do a scan at the hospital. If it had burst who knows the damage it could have done.

It does sound like you’re having a serious flare up and perhaps there’s an endometrioma cyst causing more problems. Can you get a gp phone appointment?? Now that you’ve been to a&e it’ll be on your medical records, so demand a gp phone appointment and tell them that you are in constant agony but the hospital said your gp had to refer you for further investigation. Hospitals are still doing scans. I was referred maybe 3 weeks ago and had my appointment just over a week ago and low and behold my endometriomas are growing.

Don’t take no for an answer - they are taking referrals and anyone who says different to you is lying - they’re banking on people shying away in the face of this virus. Your condition is serious, your health is as important as anyone’s. Take care of yourself x

I went private to find out what was happening, best £200 ever.

Paid for op as well.

Although will be due MRI in five to six months, now thinking of paying for one now. I am begrudging having to pay out more at this time.

Do you mind me asking what they did about your large cyst? I'm in a total panic over mine - 14cm on the left ovary, 8cm on the right, both endometriomas. I've never even had a lap! They don't give me too much pain, only occasionally. It is discomfort more than anything.

Of course not! They referred me for surgery - it was over a year wait on the NHS but then I saw a gynaecologist privately and he kept writing to my gp insisting they send me to him on the NHS as he could do it sooner - finally they did that.

Anything over 5cm should be considered for surgery, yours is significantly bigger so I imagine it’s highly likely you’ll need a laparoscopy to remove it.

I don’t want to scare you but I want to tell you they warned me I may need a c section incision to remove it because it was so large. When I woke up it was the first thing I asked and thankfully they managed to remove via laparoscopy. You’ll need to find a experienced specialist to deal with it. Prospect of a c section was especially daunting for me because of prolonged recovery time and obviously the added risks/potential complications.

It’s good to hear they aren’t causing you too much pain but in all honesty it should be dealt with rather than letting them get bigger. Again, don’t want to scare you but I had to carry around a letter in case it burst - they said if it did and I was in too much agony to speak then the letter would help inform people around me.

Worth mentioning the gynaecologist I saw privately also insisted on me starting decapeptyl (gnrh) injections for the 3 months before surgery. He said it would 1 stop it from growing and 2 may even potentially shrink it which was key for surgery to make it as “clean” as possible (they have to cut into the cyst and drain it before they remove it). Luckily the injections sat well with me but as with all hormonal treatments there are side effects to consider.

I hope that helps x

Thanks for responding! I'm already awaiting surgery - frustratingly it was set to take place early March then moved due to an urgent cancer patient (which I fully understand!) but then along came Covid-19 and on the next date of my surgery it was cancelled while I was already in my gown, and I was basically told to get off the bed as it was needed elsewhere. I'm currently on the combined pill as I asked for something to help stop the growth while I wait. I will admit I was very weepy about it all, and annoyed - because after years of being fobbed off by GPs I had to go and see the doctor at Christmas due to a lump (clearly the 14cm cyst) and everything had now progressed to this point. Initially she thought I had a hernia...I was scanned in January, got the earliest consultant appointment I could and he put me on the urgent list for an MRI and surgery. At the moment I try to stay calm, eat properly, and also research fertility preserving treatments to pursue post op. I've been in a sort of daze since diagnosis, so it is wonderful to speak to someone who has also had an endometrioma of comparable size. Thank you so much.

Gosh having surgery postponed is so disheartening. I think people underestimate the psychological toll too - you have to psyche yourself up for it and then for it to be dragged out... not fair really. It sounds like you’re doing everything you can to manage it, but obviously there are things out of your control. Stay strong, you’re doing the right things!

I totally get what you mean about a daze - my endometrioma cysts we’re back less than a year after surgery. I’d been trying to manage them but most recent scan showed they’ve grown. Normally I’d be stressed like mad and crying etc but once you've been going through this for years, the endless chasing of doctors and answers... it just all becomes a blur doesn’t it.

Give yourself credit for persevering though I know the frustration must be REAL! After being messed around all that time, knowing something was wrong but being dismissed and the end result being a large cyst that could have been prevented... it can be infuriating. Definitely let yourself feel sad and weepy - I mean endometriosis is almost at war with your body, you’re having to find the strength to fight this daily and it’s draining physically and mentally. You may even be emotional at the prospect of the end or some relief being in sight... Whatever you’re feeling is understandable and justified.

Always here if you need to talk and let me know how the surgery goes - it’ll come around and you’ll be rid of those cysts don’t worry!

Thanks again for your kind words, and I'm so sorry you have had a recurrence. The fact they're bilateral (for both of us) adds more stress and anxiety. Just have to wait it out and hold tight until things are feasible - and I'll be sure to update. You're right that the physical toll and psychological one is difficult, as well as just practically - I missed a lot of work due to appointments etc. This illness really has a lot to answer for...

This kept happening to me, although sometimes my bloods came back showing sky high inflammation markers, to the point they did a laparoscopy to remove my appendix and of course it wasn’t my appendix and after surgery they went me off as an out patient!

I was lucky to be able to get private health care through my work, I have to pay for it but within 6 weeks I’d seen a consultant, had a laparoscopy, been diagnosed, endo removed... I’m now waiting for covid to pass so I can have a hysterectomy.

If I hadn’t of gone private I’m sure I would have been back and forth with a&e trips and them sending out ambulances and then telling me I’m “just having a period”.

Good luck i hope you get there.

I agree with Lily1986. You need to be more assertive (nicely obviously) with your GP. You need to really need to lay down the symptoms. I had heavy clotting with my period and a big one which flagged issues , was bleeding between periods. The marker in my blood did come back high (CA125) so I was fast tracked . So possibly that’s what made my journey different. This was my third visit in two years but this GP did all the things you would want her to. Ultrasound , CT scan hysteroscopy revealed 2 cysts, fibroids, polyps meant I had a full and total hysterectomy (I am 45) but a shocker was that I had level 4 endo so whilst in surgery, they removed all of it from my bladder,

Bowel, vaginal wall and they actually removed my appendix too

It’s probably a stumbling block because of the bloods being clear but that could change

Push back, lay it on the line as much as you can . Somebody will listen ! A&E are absolutely amazing but for this sort of thing you need to be on the proper investigative route . ultrasound, CT scan , and appointment with a gynaecologist in between . Good luck !!! And as somebody else mentioned, do pay for an appointment if you can, I didn’t but would have done. So some good research at local private hospitals to see the articles of levels of expertise of each gynaecologist. They mostly work in the NHS anyway but you at least get to choose if you want to .

Take care and good luck

Hi Have you had a Ca125 blood test done, like you I was fobbed off for 3years. They told me I had a simple cyst on my ovary, but i was in agony with it. It wasnt untill I had enough of getting fobbed off I went to the doctor and demanded a referral to a gynecologist and a Ca125 test, when my blood test came back in the 80s they realised there was inflammation in my ovary from there I had an urgent referral to a gynecologist/Surgeon and he scanned me and knew it was a chocolate cyst that grew from 3cm to 7cm. from there I had my lap/surgery 10days later, Not to worry you but I had to have my left ovary and fallopian tube out.

You should demand a Ca125 and a referral to a gynecologist. No one should have to live in pain hun we know our own bodys and know when some thing isn't right.

Lover124
Lover124
in reply to conlou

I haven’t had a Ca125 test no, they keep saying they can’t do anymore tests at the minuet and they can’t do any referrals until the pandemic is over x

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