Feeling unable to accept it!!!

[Katy1988]

I got diagnosed 2 years ago and never and still don't want to except what's going on! Seeing my mum go through it was hard enough let alone trying to convince doctors that I was certain I had it!! But no doctor wanted to believe me as my periods weren't heavy but eventually turning up on their doorstep in pain someone took me seriously! I then had the operation which confirmed I had it quite seriously! Since then every time I try to speak to a doctor they don't wana know as my periods are not heavy yet aren't concerned that some months I can't get out of bed due to pain!! Is this the same for others cause I'm losing faith in any doctor!

[carlaanne]

Aww hunni ur same age as me they cnt take it seriously unless ur in ane all the time I av had it 10 years n only now there giving me a hysterectomy its a long proses if u feel ur talking to def ears so to speak ask 4 a 2nd opinoin they have to honor that write x 1 doc will listen n understand if pain gets out of control go ane they will have to take notice end of the day its excruciating pain don't suffer xx

[Impatient]

I think from reading your post you mean accept it rather than except it. They have different meanings.

When you had surgery was any endo removed at that time or was it just a diagnostic look around operation?

If it was a diagnostic look around then next step if to look on the website for the accredited endo surgery centres springing up around the country - find the one nearest to your and write down the details.

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

Then book to see your GP and ask him or her to refer you to the endo centre of your choice.

Waiting lists are long and it can take a few months to be seen but these are the best places to have more complex endo cases dealt with.

If your Gp refuses then you need to try a different GP at the same surgery - preferably not a locum, and if that fails too then you have to switch to a different surgery until you find a GP who is sympathetic and will to refer you. It can be a right faff persuading dinosaur GPs that you want to get a referral but you have to battle to get this done. takemum with you for moral support - or even dad.

The best way to tackle endo is always to get existing endo surgically removed entirely where possible and then follow up that by reducing or stopping your periods.

This can be done a number of ways , BC Pills, arm implants, mirena coil etc.

Mirena Coil is the best of the bunch because the hormone dose is so low - only 20% of the pills, and also because it lasts up to 5 years of stopping your periods without the need for daily pills.

It does however take time to get working - about 4-6 months average.

It can also be very painful to have put in when you do have endo - so give it serious thought as opting to have it put inat the same time as having the surgery on your endo is the best option to go for as you will be knocked out cold when it is inserted and they can use ultrasound to ensure it is in the correct position too.

It doesn't suit everyone, any more than the BC pills do, and if it doesn't suit you it can be removed a lot easier than it went in.

when it stops your periods it stops period pains and cramps and pms and saves you a fortune in tampons and towels and pain killers and gives you back so much pain free time in your life. it is certainly well worth considering and considering sooner rather than later. it will also add weight to your request for a surgery to get more than just the op done under general anaesthetic.

You can also ask for a smear test to be done too while you are unconscious if yo are old enough for those but find the procedure too painful without anaesthetic, as many endo ladies do.

Endo surgery is for pain - it doesn't stop heavy periods. So not having heavy periods is not the issue - it is a blessing, but it doesn't mean your endo and endo pain should be ignored and left to get worse.

Because of GPs not being sympathetic it is still taking an average of 7 years to get a diagnosis surgery, which is at least one hurdle you have crossed already. Don't be shy about demanding a referral and don't show that you can be a pushover and fobbed off time and again. I'm afraid it does happen all to often, but the only way round that is to demand what you are entitled to and stick to your guns about it. Moving Gps several times if that is what it takes.

Alternatively if you are flush with cash you can go and pay for a private consultation with an endo centre and if they agree to surgery then the op can be done on the NHS. It is an option - but only if you can afford it and not all of us can.

Very Best of Luck - you will need it and a lot of patience too.

[Hidden in reply to Impatient]

School mistress in another life me thinks?????

[Katy1988]

My apologies for the awful spelling!! Yes I did have some endo removed and after I did I had some good months but now the pain is worse that ever, energy levels are non existent and I'm either feeling sick or being sick! I've had trouble with several different pills and seeming as my body can't cope with the combined pill doctors seem reluctant to try much else than pain killers! I suffered with depression 7 years ago which I had one doctor just tell me I was only feeling so low because that was back which is rubbish cause I know my own body!!

[Cat247 in reply to Katy1988]

You poor thing, I'm not sure you need to be corrected on your spelling when you are in so much pain that's the least of your worries. Endo effects everyone in a different way. You are like me where the pain is worse than the amount of bleeding. It took many years for someone to take me seriously hun and looking back I wish I was more persistent than I was. I think if your doc is not listening then change GPs. Did the surgeon who found endo not even give you any options or a referral to a specialist? All I can say is pester pester and pester. Sorry can't be any more help.xx

[Hidden]

Never feel the need to apologise for your spelling on this site I really sympathise as we've all had to push to be heard and it's demoralising. All I can suggest is to keep going. Do your research & take control. Know what you want & keep polite but be prepared to be your own advocate. If you've already had a lap & have a diagnosis of 'serious' endo aswell as your family history then push to be referred to an endo specialist ( BSGE website) also look into excision rather than ablation) as this should give better results and longer lasting relief. Sites you might find useful to get more info from are Endometriosis.org , Endopaedia , and join facebook groups Nancys Nook and EndoMetropolis. Good luck xx

[Impatient]

Sorry to raise correct word use- there wasn't an issue with spelling, the word was spelled correctly, it's just that the wrong word was chosen. (and yes Babelfish I do work in school in this life too. I guess I had my literacy head on there.)

Apologies for any upset caused by pointing it out. but it did change the meaning of the heading and article from the one probably intended.

[Hidden in reply to Impatient]

As suspected - I come from a family of teachers. All well meaning but they quite easily ( & frequently) offend when they forget to leave their teachers hat at school. There were so many other ways you could have approached it - I just find it sad that you felt the need to say anything at all.

[Scooteeder]

Hi "Katy1988",

I can well imagine that you are feeling pretty frustrated and upset at present. It's difficult when you don't quite seem to know what's gong on, or who is going to take responsibility for your care and treatment.

I can tell you from personal experience that Doctors can be extremely difficult to deal with. As one of the other ladies here correctly said, on average it's taking @ 7 years for women to get an accurate diagnosis of Endo. This would seem to be because Endo is not the commonest of diseases, and it isn't widely talked about. Therefore, it isn't very well understood, and there are loads of myths circulating, that even Doctors seem mistakenly to believe. I'll bet that you, along with many women on this Forum, have heard nonsensical things like "Endo is cured by pregnancy", or "young people cannot have Endo", or "hysterectomy cures Endo"... These things are NONSENSE, and UTTERLY UNTRUE. However, many people seem to believe them, including Doctors - and many Doctors even seem to tell patients things like this. Besides, G.P.s and Gynaecologists ate NOT Endo specialists; so they tend sometimes to get easily "out of their depth". With all of these problems, it is unsurprising (though still a pity) that women do not get the best care and treatment for Endo.

In my case, I had painful and erratic periods as a teenager, that unfortunately got overlooked. My problems came back with a vengeance in 2002 - painful, heavy periods; upset stomach; bloating; nausea; water retention; constant back and pelvic pain; fatigue... Despite telling Doctors repeatedly what my symptoms were, it took until 2011 for me to get an accurate diagnosis of Endo, and to begin treatment! In the meantime, I was told it was "stress", it was "IBS", it was "normal period pain", it was "anxiety". Endo (including UNDIAGNOSED Endo) is NOT any of these things - it is ENDO! The issue is that many Doctors do not listen fully and carefully enough to what patients say (either because appointments are rushed, or because the Doctor is a bad listener); or they go off at a tangent, believing that what they think a woman has is correct, when actually it is not. Many women on this Forum have experienced similar problems.

YOU need to have the correct support and treatment, as does every woman. YOUR health is important to you. YOU know your own body.

Endo is experienced differently by all women; we do not all have exactly the same symptoms. Instead, symptoms can depend on WHERE the Endo grows, HOW MUCH THERE IS; as well as more personal things such as a woman's TOLERANCE OF PAIN, whether the woman has OTHER ILLNESSES besides Endo that may interact with it. ALL OF US are DIFFERENT. This is why it is so IMPORTANT to LISTEN TO YOUR OWN BODY!

The fact that YOU do not have heavy periods DOES NOT mean you cannot have Endo. Clearly, evidence from your previous surgery shows that YOU DO! Personally, I think it may be a good idea for you to keep a SYMPTOM DIARY in which you record what symptoms you have (e.g. pain, bloating) and when they happen (e.g. on period, or all the time). This will show you (and your Doctors) exactly what your symptoms are.

I would also try to find out if you have any record of what was found during your last surgery. Some Hospitals provide you with a letter, or a discharge note, that gives details of the surgery you had, and of what was found. Check at home to see if you have any records of what took place during the last surgery. Also, if you feel up to it, you could try contacting the Hospital to ask for details (or get your mum to do this on your behalf). I would explain to them that you had surgery for Endo a while ago, and that you now feel it is returning (due to having similar symptoms) - therefore you would like to be clear what was found during the last surgery (as a comparison). You could even be sneaky, and suggest that you are hoping to be referred again to them - ask how best to go about this.

The reason I have told you this is because when you had your surgery, a letter detailing what was found would also have been SENT TO YOUR G.P. FOLLOWING YOUR RELEASE FROM HOSPITAL. Therefore your G.P. should be FULLY AWARE that you had surgery for Endo. It might even be a good idea to make an appointment with your G. P. to discuss this fact (if you can find your own copy of the Hospital letter, so much the better). Take somebody with you for "moral support" if you want.

You need, ideally, to be referred to an Endo Specialist (see the link "Impatient" sent you - it's very helpful). You cannot be expected to live endlessly with pain! And sod (excuse my French!!) the issue of past Depression - that is irrelevant (or should be to any good Doctor)! As you say, YOU know your body, so YOU know if your symptoms are physical or emotional. Besides, a person can have Depression AND still have Endo - the one does NOT rule the other out! To be frank - many women end up with Depression simply because they are forced to live for years with pain that is NOT BEING TREATED - chronic pain often makes people feel "low"! Endo has PHYSICAL symptoms that any good Doctor should NOT ignore, or fob off. Yes, it may have emotional effects, too - but these can be reduced, the quicker and more effectively Endo is dealt with. The issue here is NOT your past history of anything - it is the PRESENT problem of a Doctor who does not listen, and cannot be bothered doing anything that amounts to a good job!

Take your time to read through the advice and information provided by the responses here. You WILL have to be tough - as many women with Endo have to be. It seems we often have a fight on our hands just to get an accurate diagnosis and treatment. This is CLEARLY WRONG... but the more we keep pushing, and fighting, and discussing things with each other, and telling people, and demanding our rights... the more chance we have of changing things! Book to see your G.P. take a symptom diary, take your letter from your last surgery (if you find it), take details of specialists in your area... and take some "moral support". Demand referral to a specialist - and do not accept "no" - change G.P. if you have to!

Your health is worth more than anything to you - DON'T let anyone else compromise it. Oh, and if your Doctor refuses to believe that Endo does NOT always mean heavy periods, print this off and show it him/her...

webmd.com/women/endometrios...

It clearly says that only SOME WOMEN have heavy periods!

I do hope you can get something sorted out. Wishing you all the very best.

Take care,

Elaine. x

[Katy1988]

Thank you all so much for your responses it's my first time on here so every bit of information has been wonderful I'm certainly going to take it on board and keep battling on x