A little scared to ask for help.

[LadyBugg]

Hi there, I am new to these boards and to be honest I had no idea there was this kind of support out there. I've felt overwhelmed reading lots of peoples stories and to feel as if someone else knows what it feels like. Okay, so I have not had the proper diagnosis (op) but my doctor has been treating me for endometriosis for 18 years (I am 29). When I get pain it comes a week before my period, and during my period and I am unable to walk during some of it, it is truly the worse pain I have ever felt. I feel absolutely paralysed with pain in my back, legs and lower abdomen. I shake, throw up, sweat and pass out. Quite commonly I find myself led on the bathroom floor trying to stay conscious and trying not to phone for an ambulance as sometimes I dont know how much more of the pain I can take- just willing it to stop.

I've been treated with mefanamic acid, but after 10 years this made me quite sick. So then the docs tried me on contraceptives to try and control the amount of periods I have but this made me bleed constantly and I became anaemic. The doctors response was "well this is the traditional way we treat endometriosis, but we shall have to take it as it comes and try you on different things until something works". Now I am on diclofenac, tranexamic acid and paracetamol - all of which barely cover the pain, and I still struggle to manage every month.

I am quite often frightened to drive when im on my period incase the pain comes on. I am also embarrassed and quite often in trouble at work due to this problem. None of my employers have been understanding, they give me the impression that they think I am making it all up. I have been on final written warnings and all sorts. The sainsburys which I used to work at told me that if I didnt try a different route of treatment then they would issue me a final written warning, this was even though I had provided them with doctors notes. I was just not taken seriously at all. They just do not understand. I recently working in a restaurant and asked politely that when I get pains, can I do some of the less strenuous jobs, but instead they have ignored my request and each week (endo or no endo) I am made to hoover the entire pub which brings my pain on quicker. I left my job the other week because (number 1: pressures from uni) but also because I had been sick due to endo and had been confronted about it and felt completely embarrassed in front of everyone and made to explain myself.

I'm frightened of having the op, my mother has been diagnosed with endo, and also my auntie, and my doc told me that it can be hereditary too. I have been plodding along taking these pills and still getting pain, stress, severe anxiety and getting into all kinds of trouble at work. It is truly demoralising. I cant see how I can hold down a full time job, and this terrifies me as I have always worked hard. I've never known how to ask for help, and my doctor has never really pointed me in the direction of sites like this. It is so draining and sometimes I wish i could just stop taking all the pills, and wish I didnt have to go to work frightened that I might have to go home.

Kinda wish I could go to a group meeting in Bristol but i'm nervous. Of course as you are all aware, it is quite a personal issue, and i'm quite an anxious person (probably has something to do with the endo....)

Anyway, there is my story..... any advice, help, pointers, or just plain hugs are welcome.

Nice to meet you all.

Katie

[Impatient]

Hugs to You.

Step 1 Change your GP.

Clearly you are being fobbed off and no one has done a single thing to tackle the endo or adeno as yet.

check online for yor local medical surgeries and find one with a Doctor that specialises in women's health issues (quite often this is a female Gp but not always and they do tend to be a bit more familiar with endo which is always a step in the right direction.)

Step2 when you have found a sympathetic GP, ask for a CA125 blood test (not conclusive but a high result does indicate endo and adds weight to your theory and supports a push to see a gynaecologist. It can be done privately for about £25 if you can't get a GP to authorise it. It may not show an elevated result in which case ignore it as it doesn't rule out endo, but a positive or elevated result does point to endo.

Step 3 keep a diary of your monthly cycle of pains and periods - note down any foods you eat or drinks that might make pains worse, any activities that make pains worse. What meds you are taking and how often you need to take them. How long periods last, how long pain lasts and so on. It will all of course point to endo - (because you probably do have endo)

Ask your GP to arrange an ultrasound scan to check for fibroids, cysts, any clues to adhesions (they are scar tissue which can stick organs out of their usual place - often the ovaries) . Please don't worry if these are clear - it is again narrowing down the causes and pointing to endo, but adhesions can also indicate endo.

All of this is a bit time consuming but it builds up a picture that adds to your arguments to push for a laparoscopy to see how much endo there is, map out the locations and get it surgically removed, cut back the adhesions, restore organs to their rightful location and so on.

at surgery you can ask them to give you a smear check while you are out cold (always the best way) and also to have a mirena coil installed too as this takes a few months to work but would then stop your periods for up to 5 years if you can put up with the niggles while it settles down to work.

Makes such a vast difference to life to no longer have periods, period pains and all that rubbish ruining your life each month. Really Liberating and well worth a try.

it doesn't suit every women - and some do decide to have it taken out after a few weeks or months - but for most ladies it does work and makes such a difference.

I would also explain to the surgeon that you are at Uni - and if there is any choice in when you have the op, perhaps best to have it after exams and before summer hols so you have a decent number of weeks to rest and recover before heading back to carrying heavy books and sitting in lectures and all of that. If you don't mind when you have it then the sooner the better.

With a confirmed diagnosis you can then explain to UNI that this is a diagnosed medical condition and any allowances that need to be made can be made for you. Remember that 1/10 of all females have endo - perhaps even more, so in a class of 30 women there should be at least 3 with endo. You won't be the only one at UNI, not by a long way.

Your employer is also legally obliged to make allowances for you under the equalities act.

If that means lightening your work load or giving your more frequent rest breaks - that sort of thing, then they, must make reasonable adjustments and those are reasonable. It is harder to argue for extra allowances when you still do not have a firm dignosis.

Harsh and unfair as it may seem, Sainsburys were right, it is up to you to push for alternative treatments to the ones you have been fobbed off with so far.

All they are doing is prolonging all the pain and suffering needlessly. Most of us have been there, learned the hard way and now much stronger for having gone through the battle. It took 29 years for me to get my surgery. I hope you manage to get yours much quicker than that !!

I found letters sent from my employers occupational health officer to my boss about my record at work saying I must be partying to hard.... as if I could. I could barely get out of bed.

That was from 15 years ago. I would love to track down the people involved and throw my medical records in their faces now. "See - I told you I was not well !!!"

I am a very different person now to what I was at your age. And back then I was very shy and reluctant to push for anything more than what my numerous GPs recommended. Ofcourse there was no internet back then either - and I hadn't a clue about endo - I sure knew something was wrong and my periods experience was much more severe than my mum or sister or any of my friends experienced - I was happy to believe what the Doctors told me that is was normal and I should just keep taking the paracetamol.

I feel a mug for being taken on such a long journey of hell when something could and should have been done about it much sooner - but it really was a whole world away from the help and info that is available nowadays. Knowledge is a powerful tool, and you know have a whole world of internet help available to teach you and prepare you for battle with the NHS.

Take someone with you to the GP for support, and tell them in advance what you want to achieve from the visit, or write down all your evidence for pushing for tests and a referal to a gyanecologist, it will help not to be fobbed off time and again and give you the confidence to really push for what you know you need to have done.

I am sending you a cyber bravery hug to give you a boost to get things headed in the right direction. You have to fight for what's best for you with endo...all the way.

So sad that it is like that at all, but it is, and you have to be your own champion and demand action. Good Luck.

[LadyBugg in reply to Impatient]

thank you that is very helpful! I have often wondered if i was being fobbed off, but of course in the back of my mind you have that little voice going "they're a doctor, they know what they are doing". I have been refused a coil because of the shape of my womb (I have a slightly strangely shaped womb) which my mother also has, and they fitted one in her to treat her endometriosis and they told her they would never fit one for her again because of how hard it was. They have extended it to 8-10years to get her through the menopause, and they outright refused me one because I have the same thing.

I have also had internal examinations too.

It would be good to talk to another doctor, I think once all my exams have calmed down I will try and get something more sorted. Its all very stressful whilst at uni, and im so close to the end now (I finish my 3rd year in 2 months).

Sounds like i'm a bit like you were before, I have been just plodding along since the age of 11. I did get fed up with it all about 5 years ago and changed doctors, but i stayed within the same surgeory. The new doctor sent me to the hospital for an internal examination, but not the keyhole op. thank you xx

[lazyp]

Hi Ladybugg/ Katie. I am so sorry to hear your story and have to say it's almost identical to mine - the lying on the floor, throwing up, wanting to call an ambulance, endless list of prescription pain meds that don't do anything, worry about sick days off work etc. I eventually pushed for help last year because I was also concerned about my fertility and finally had an operation which confirmed the Endo. They removed what they found but I still have the pain every month - however the fact I now know I have the condition and it's not in my head or my fault makes a big difference - I don't feel so stupid for being in such pain, and I look after myself a bit better e.g. with diet and exercise.

Impatient has set out some great advice and i can't really add anything, other than to not be hard on yourself about the problems you're having with work or otherwise. If you just suffer monthly pain it might be something you can plan around and ask to e.g take days off when you're expecting it. This may not be possible though if it's not predictable - I know it's not for me. Look after yourself and take as much help as you can get - I haven't tried support groups but I do think they sound really helpful and it can't hurt to try it.

[venusx5]

Hi there Katie, like yourself I am new to this and I'm amazed there is something like this out there as I hope speaking to other people who know the pains will help me through my own process. Like yourself I was put on mefanamic acid and the pill etc all to no effect. I had a laprscopy (the keyhole surgery) at the Ed of last year I took a week to recover everybody is different and in my case the first 3/4 days were hell but you recover not to Long after that. I am lucky as my employers are extremely supportive more than I can say for yours which I find disgusting as I know how hard it can be to even dress myself let alone do any work! On my last period I had a hissy fit and burst into tears as I couldn't put my sock on cause my back was so sore! Like I seen on your other reply you Definately need a new gp as you should be dealing with a specialist in this field that way you can get laprascopy and hopefully be taken more serious. It's a long process I'm still on my journey just hoping my app at the end of this month will put me in the right direction. Good luck with your studies and I hope you push this further x

[Flynn_Maverick]

Dear Katie,

First of all I am so sorry to hear what you have been going through, it sounds truly awful and you have clearly been let down by your doctors and work. It took me nine years to be diagnosed after repeatedly being fobbed off with mefenamic acid (which too burned my stomach badly) and contraceptive pills which made the pain and irregularity of periods much, much worse. If you have been offered a laparoscopy, it is a frightening prospect but the fear of it is very much counteracted by the prospect of a future without being in constant pain? You must be exhausted which must only make the decision harder for you to make... has your surgeon spoken to you about how they think the lap will go? If you don't feel supported by your surgeon or GP why not ask for a second opinion? I know only too well how demoralising it is to be not taken seriously, but you are clearly in a lot of pain and you shouldn't go on suffering like this. Tell your doctor about how impossible work has been made for you and speak to someone at university about this... they should have welfare officers that can help support you where medical staff are not. Are you able to talk to your mum or friends about this? Just talking to people about what you are going through will make it seem less lonely whilst you go after a proper diagnosis and treatment plan that works best for you and your body. Also it is worth mentioning to your doctor that your mum has been diagnosed with it too as there is a strong argument that endometriosis is genetically linked. A symptom diary is definitely a good idea too. I honestly wish you all the best and I hope you start a treatment that works for you soon. Let us know how you get on. Remember you are very much not alone xxxxxx good luck

[LadyBugg]

thanks guys, its great to know there is lots of advice to be taken! I have no idea why my doctor has been fobbing me off, and often its hard to know if I have been or not. I tell myself "she's a doctor, she knows what she talking about". I did change doctor but within the same surgery. My first doctor made me anaemic by insisting i try loads of different contraceptives which all made me bleed uncontrollably for about 6months. It got to the point where i was passing out frequently because my iron levels were so low. After this experience i had to stop taking these pills and so changed doctor. The second doctor immediately gave me an a physical examination, and then booked me into the hospital to have a little camera inserted (not key hole, just a bog standard internal). Nothing was really communicated to me - they found nothing apart from polyps which were fine (apparently). They found it hard because my womb is a weird shape.

I am finishing university very soon and am thinking of looking into the op during summer. Its all scary because i am between jobs at the moment but facing the frightening battle to secure a job (as I, as we all do, have bills to pay). I left my job because of endo and because the severe anxiety i suffer with in relation to it.

I am currently taking some of the advice from here and have invested in some wheat free ingredients, and am trying to avoid eating much of it.

thanks again everyone, it is greatly appreciated. xxxxxx