Feeling so guilty: So I've had a really bad... - Endometriosis UK

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Feeling so guilty

sophiejm profile image
13 Replies

So I've had a really bad day today, I've been in awful pain which took me to the doctors, I had to see a different doctor to my usual one as she is off sick, this new doctor told me I'm too young to have endometriosis and that my pain does not correlate as endo pain is only there 4-5 days before the period, and not as frequently as I'm having it, she them said she fears something worse, which didn't really make me feel better, anyway, it did mean that my ultrasound has now been made urgent, so maybe that's a good thing, I don't know anymore! My second problem is work..I've been off sick for 4 days, due to being in pain and also being knocked out with flu, My flu symptoms have subsided, but I am still in pain and not feeling great due to this 'unknown condition' as it couldn't possibly be endo as I'm 'too young' I'm basically stuck, whether to soldier on and go to work as I'm expected to tomorrow, or stay home and go back to the doctor for a sick note..my job has been my life but now it's causing me so much pain and so many infections I'm not sure how much more I can take, my manager also makes me feel on edge so I'm kind of scared to even approach the subject of more sick time as I fear my job will be affected. Sorry for the long post, I can't sleep either..

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sophiejm profile image
sophiejm
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13 Replies
Deb1511 profile image
Deb1511

Poor you Hun not easy when you get a very unhelpful doctor, what a load of rubbish endo can happen to anyone and for that matter to any age, she clearly does not know anything about endo?, I'd phone she if your own doctor is back explain how your appointment with previous doc went say you want to complain. I've been in constant on off pain since the 6th September and waiting for lap good luck here if you need to chat xxxx

fedupwithendo profile image
fedupwithendo

Ignore her. I was told by my gynea consultant at my first appointment years ago it was in my head.needless to say when lap confirmed stage 2 I didn't see her after the op! 5 years later and I've just had second lap. They didn't find much, bits on ovary and pouch of Douglas but I suffer from burning pain and leg pain right where it's on my ovary.I'm on mst and it still doesn't work and I don't think I'm a wimp really.my go this week decided to call me and say from the report she doesn't think I've got endo anymore! Well it must have bloody vanished! I was 24 when theyyfirst found it and I'm seeing poor girls on their teens suffer do please don't let one go make you feel awful. They are not god although some think they are and have to do anything to belittle patients. She sounds very old stool and under read. I'm sorry hun that this has happened to you. You know what you feel and your body is telling you something not right, like me.I'm not dropping in until I find out what the pain is and why I've now not had a period in 8 months! Cuddles xxxxxxxx

fedupwithendo profile image
fedupwithendo in reply to fedupwithendo

Lol apologies for predictive text! I'm half asleep still xx

Susybee profile image
Susybee

I had endometriosis diagnosed at age 15 (back then they didn't know much about it so better now I'm 36!) try to stay calm and write down all your pains & try to see a pattern if they are worse at certain times of day or month etc (apologies if you already do this) but usually best way to remember and help diagnose. If you need to stay off then do it & rest - it's a hard balancing act with work I know but if you can't work for the pain then you need to think about yourself or ask for reduced hours for a bit maybe? Hope something helps take care x

Shelly1960 profile image
Shelly1960 in reply to Susybee

I first started when in teens but wasn't helped till 30 s but now they know more and can help I am 56

JellyKat profile image
JellyKat

There's no right or wrong time to have the pain... my endo has yet to be confirmed by laporoscopy but my worst pain is mid cycle, not at the end - have looked around at info, this is still typical of endo.

GPs are meant to know a little about everything, or at least be able to recognise when they need to do tests or refer you to an expert, so it's completely feasible that yours knows squat about endo (but may be awesome in diabetes or something else, perhaps?).

Hope you can sort things out with work, see if there's some way you can do some work without suffering xxx

Naomi1002 profile image
Naomi1002

Endo is not age related! So completely ignore what this docter said to you. Just call surgery back and ask when your docter is back to talk to her. Endo will give different pain complaints to different people and not everyone has pain all the time. Are you already diagnosed or not yet? Ultrasound is good, but you wont be able to see endo on this. The only thing is to have keyhole surgery when you can be diagnosed with endo.

Work is not everything, even though it is very important. I learned this the hard way. I was plotting on too long until my boss told me that i should take it easy, which is hard if you love working.

Just look after yourself, get a sicknote and explain to your boss what is happening.

Good luck!

JWild profile image
JWild

My heart felt heavy when I read your post. Please ignore this doctor and get a second opinion. As the other ladies have said, endo can happen at any age. Lack of awareness/education in the medical profession is the biggest hurdle to getting diagnosed. Also, regarding work get in touch with Endometriosis UK as they will be able to give you advice on what to do. I have had ten operations in four years, please keep pushing to get the help you need, so that like so many women you don't end up with this disease ravaging your body in your thirties. Take care xxxxxxxxx

Yazza profile image
Yazza

I urge you to email your doctors and politely tell the doctor in question to re-educate herself as she clearly doesn't understand endometriosis!

Maybe just maybe if we keep telling them when they get it wrong instead of giving up we may be able to educate them on this horrid disease. Xx

I had to make a complaint to one doctor were I go as she was insulting and damn right rude suggesting that I should have a sexual health screen (bearing in mind I've been with my husband for 12 years) !!

I have since had surgery to remove deep infiltrating endo. X

Sharon

Shelly1960 profile image
Shelly1960

Stupid dictor you are born with endo develops in the womb so don't worry but you need stronger painkillers hun it's hard when you young and want kids I would advise an one when yiu got your kids have hysterectomy and let life begin good luck with scan

Missy30 profile image
Missy30

Hi,

I would like to ask how old are u? As I was diagnosed with endo after a lap last Friday and I am only 26 (nearly 27!) also I must add I have been suffering the problems of endo since 2 years & maybe even longer but 2 years they have been a nightmare. My main symptoms are pain during sex, sometimes bleeding between periods , awful pelvic pain which is much worse when ovulating & when on period and heavy bleeding also back pain, leg pain which are all related to endo! Keep pushing & pushing to be refered to gynae for a laprascopy! It took me a long time to get there but I've finally been diagnosed & I know now that what I'm experiencing is not in my head like my gp first said I just had "heavy periods" stay strong, big hugs! X

sophiejm profile image
sophiejm

Thank you for all of your comments, it really does mean a lot! I went back to the doctors today and spoke to s go in training who was amazing, he is chasing up all of my appointments again and he has also said that my symptoms are typical of endo, so once again I get a little hope for some treatment, he gave me a sick note which I've handed into work and hopefully it won't affect my job, but if it does, then it does and it's obviously not s meant to be, they also put me on anti depressants as all this back and forth with the doctors and the unknown has really beaten me down, so all of your advice and care has briskly boosted me, I think it's a couple of weeks rest for me but hopefully I would of had at least 2 of my anticipated appointments by then! Thank you once again, this group has helped me beyond belief :) get well soon everybody xxxx

sweetchild profile image
sweetchild

Girl I understand your struggle. I had a lap some weeks ago and sometimes I feel I'm better and I'm not and then sometimes. I feel like the doctor thinks I'm making it up. And I am so FRUSTTTRRRAAATTTEEEDD WITH ALL OF THIS. I don't know what to do. So trust me sister I feel you! You are not alone.

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