Hi

[nataliebell]

Hi I'm in a lot of pain and its making me ill I have been to see bowel specialist nothing gyno been told can't have endo bc I'm 23 but my mum had it and I'm in agony please help

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It's a definite possibility that you might have endo even if you're 23! Age is not a factor with this disease. It takes up to 8 years to be diagnosed with endo (whih is most likely because we all get fobbed off by doctors that say we don't have it!!)

I've got bowel issues as well as endo so I have to see two different types of doctors. Only in the last two months have they started to talk to each other and see that my symptoms are all linked and that they're going to have to work together.

Go back to your GP and ask to see a gynaecologist and also a bowel specialist and see if you can have an ultrasound at the least and possibly a sigmoidoscopy too to check your bowel.

Good luck! Be strong and don't be dismissed!

SM x

[halfpint17]

Hi, sorry to hear you are struggling with pain and that you are not being taken seriously/fobbed off. I was diagnosed in December at 36, following three years of being misdiagnosed, not being taken seriously and had it made out I had health anxieties. Not quite sure how they came to that conclusion. Yes, I admit having new pain, blood in urine and bowel, amongst other symptoms, without known cause did cause anxiety, but never did I think it would end up being an incurable disease. I thought it must be an infection of some sort not showing up. Sorry for rambling, but I'm yet again shocked at what you've been told, by a qualified gyno, that you can't have it at 23. If you look up some posts on here, there are a number of people, who have it even younger, including people suffering from around 12. I say I'm shocked, but unfortunately not at same time as have heard similar stories. Its very concerning that all gynecology departments aren't more knowledgeable on this. I've been told by an endo specialist that you are born with the disease, but actually starts taking effect when you start your period. I don't want to worry you, but if you have a mother, aunt or cousins, then you're 50% more likely to have it yourself. Sorry for rambling, been awake all night, but my point is, get a second referral, because being 23 certainly does not rule out endo.

Not to worry you, but I saw a bowel specialist, who also said no endo after my first laparoscopy. However, the lovely general surgeon who carried out diagnosistic laparoscopy believed it to be a big endo nodule so had referred me onto an endo specialist. Even at this point, they were acting like it wasnt serious. However, the mri showed up the very large nodule in the PoD and my womb is stuck to my rectum, amongst other stuff, so having major op in September with the bowel guy and specialist.

I think not being diagnosed until I was 36 is why it's now at a severe form of disease, but if you can get someone to investigate into further for you, if it does turn out to be endo, hopefully catching it earlier will be of benefit.

Wishing you all the best, please keep me updated x

[nataliebell in reply to halfpint17]

Will do going to phone first thing tomorrow because my mu collapsed with pain I would rather now be admitted to hospital x

[lu0610]

Hi,

I'm 22 (21 when diagnosed) and I went through a very similar thing!

When my GP finally referred me to a Gyno, he told me I was too young to have endo and I was suffering from IBS! I knew I didn't (remember you know your own body!) but went to see a bowel specialist to confirm.

My bowel specialist was almost certain it was endo and not IBS and in December 2013 he conducted a diagnostic laparoscopy on me to discover I do in fact have endo and no bowel issues.

Since then he has referred me to a top Gyno who specialises in endo and I have my next laparoscopy next Thursday to treat the endo!

After many misdiagnosis, it took a year for someone to finally take me seriously.

Don't let doctors fob you off because they simply don't understand the disease!

Stay strong and good luck! X

[halfpint17]

Gosh, your poor mum. Do you think her symptoms today are endo related? Are you going to a and e?

[Yazza]

If you can I would pay for a private MRI as this would happen very quickly and would show adhesions and any bowel nodules I'm about to go down that route as I'm fed up of being pushed from pillow to post and already have a diagnosis. X

[didymus]

Rubbish. I started my periods aged 11 and started endo symptoms several months later - certainly by the time I was 12. Until I was around 30ish, the symptoms (as horrific as they were) centred mainly around my period week. They then spread throughout the full month. I did not get my diagnosis until my mid 30s by which time I had Stage IV endo everywhere with dense adhesions. This had also spread to my ureters and was affecting my kidneys. Despite my history I had to fight hard for a diagnosis and to get appropriate surgeries. I'm still in daily pain - but perhaps my situation would have been better if I had been listened to. Don't be fobbed off by arrogant doctors who have no understanding of the disease - go and find one who knows what they are talking about! Be strong and don't be pushed around x

[nataliebell]

Just off phone to doctors and been told have to wait 6 months in agony I can't do this

[Kayleigh88]

I was the same Hun, I was told I couldn't have endo because I already had a child, I kept asking to be refered and they wouldn't, in the end I had to wait until I had been trying for a baby for two years so that I could have a laparoscopy to find out why I wasn't conceiving, which confirmed to them I did have endo after them telling me I didn't, I was lucky that I got my lap for my fertility issues as if I had waited to have one for endo I'd still be waiting now! I hope you get your answers soon x

[LeyaC]

Yet again, people having the same story over and over again, you are flaming well born with Endo, its not something that develops out of the blue. Its a genetic condition which is why every woman in your family probably has it. I was 16 when diagnosed and am 18 now and about to go for my second lap on Monday. There is no such thing as too young. In all honesty, check put the specialist Endo centres because they will help you so much more and will diagnose you. I've been to loads of places and only this specialist has agreed to operate. My first was a general gynae, the second was a provisional centre gynae and dismissed me as having mental health issues, the third was another provisional centre and she wasn't even a gynae and yet she kept telling me she was, then I came to this one which is accredited and he's very helpful, he had an appointment made after just one week and the next week I saw him, I had treatment and now 4 months on I'm having surgery. Visit this website and click on " specialist centre" i think and then click on "accredited centre" they are centres that have worked hard and have a constant clientele with Endo that they work with and they only work with Endo ladies now.

bsge.org

I hope that helped and I wish you the very best of luck.

Leya xxx

[mensrea]

I was diagnosed at 18 but this was after at least 3 admissions to hospital and lots of visits to A&E. They kept on saying I had a grumbling appendix and the last 1 popping overies. I finally had an emergancy appendectomy which the endo had grown into and around as well as a very large chocolate cyst on my left ovary and was diagnosed with Severe Endo from that point on. The consultant told me I was 'a very silly girl' as I must have been in so much pain and bleeing excessively, I told her I had been to that hospital casualty dept only a month before and they had sent me away with popping ovaries, her response...well at least they got the ovary bit right. I had to carry round a piece of paper from my consultant to show to GP's who didn't believe I had Endo because I was too young. I really had thought that this sort of stuff migh have stopped by now as I'm 46!

I know it is hard but you can ask for a second opinion, which you need to do, you can also choose who you want to see so I would try to find an endometriosis specialist in your area. It is totally ridiculous in 2014 that they are still holding onto these ridiculous assumptions about a disease we are supposed to go to them to seek help for.

I did a lot of my own research which is easier now we have the interenet, I think the best thing you can do is inform yourself as much as possible, in my experience Dr's don't like well informed patients but if you quote back a bit of research to them they know that they can't just fob you off with nonsense.

Good luck.

[Scooteeder]

"Nataliebell"

DON'T give up, or be deterred. That is the message that comes across from all the other responses - and I heartily agree.

There is NO age barrier to Endo - any woman can have it if she is of an age to be menstruating. So, you can show signs and symptoms of it from puberty onwards. I would agree with others here, that you are probably born with a genetic tendency towards it, anyway - it manifests itself once you start menstruating.

There are LOADS of stupid myths circulating about Endo - things like "pregnancy cures it", or "you can't have it after menopause". NONSENSE! The sad thing is that many Doctors, Nurses and other medical staff foolishly, and ignorantly believe these myths - just like some members of the general public do.

Bowel problems CAN be a symptom of Endo, especially if they coincide with your menstrual cycle. I have Endo (it took me years to get a diagnosis - I'm now 43, and first started with clearly recognizable symptoms in 2002). My Endo is of the Deep Infiltrating type, and affects my Utero Sacral Ligaments, Pouch Of Douglas, and area between the bladder and bowel. As a result, I have a LOT of bowel symptoms.

It might be a good idea for you to do some online "research" - I agree with the other people here who have suggested you need to get clued up, and know your rights. True, some medical people seem to resent patients who know what they are talking about - but it's your body, and the best way of dealing things is to get to know your symptoms, know what you are talking about, and stick to your guns!

To find out more about Endo symptoms, and how different parts of the body are affected, try reading -

endo-resolved.com/symptoms....

As somebody else has already suggested, it might also be a good idea to try to ask for a referral to an Endo specialist centre. Many basic Gynaes do not have the skill or training to work with Endo patients, and therefore get diagnosis and treatment wrong. Sometimes they even miss spotting the illness altogether! To find a centre, try reading -

bsge.org.uk/ec-BSGE-accredi...

Like a lot of the women on this Forum, I was "fobbed off" for a long time before getting my diagnosis. I was told my pain was "normal period pain", made to think I was lying, made to feel like a hypochondriac, and made to feel like I was going crazy! So many Doctors just don't seem to understand the illness and its symptoms, and they simply do NOT know how to deal with women who have Endo. You have to be REALLY PERSISTENT in trying to get them to listen.

I really do wish you good luck, and truly hope that you can get the diagnosis and treatment that you clearly need to help you sort out your problems. If you ever need more help and advice, there are always people you can talk to on this Forum - most of them, like me, have experience of Endo, and we are happy to answer questions, and offer support.

Best wishes,

Elaine. x

[nataliebell]

Is there any specialist in glasgow

[nataliebell]

been loooking for a speicalist for a gyno but they all are referal from gp help is there anywhere i can find one or call them

[mama1 in reply to nataliebell]

In was seen by an endo specialist in Glasgow his name was Chris hardwick, he is a gyno in the Victoria and also the southern.

[nataliebell in reply to mama1]

hi do you need a referal for him or no

[halfpint17]

Hi, yep you need a referral from a gp, even if it's for a private referral. I also agree with asking to have an mri done, as it confirmed the huge module in the PoD as being endo and also my womb being stuck to bowel. Wish you all the best. Do not give up fighting. x

[marvalous]

Hi, I know what your going through I have been experiencing pains for years now, are you taking pain killers? when did the GYN said endo can be done.,,,hope you feel well soon.

[nataliebell]

Thank you ladies feel abit better knowing I'm nt on my own my partner is really helpful but still really sore

[nataliebell]

Thank you ladies feel abit better knowing I'm nt on my own my partner is really helpful but still really sore

[nataliebell]

Thank you ladies feel abit better knowing I'm nt on my own my partner is really helpful but still really sore

[nataliebell]

Thank you ladies feel abit better knowing I'm nt on my own my partner is really helpful but still really sore

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I'm 23 and I have it... quite badly actually!