Need some help

[tigergirl]

Hi everyone,

Sorry if this is a bit of a long post but I'm at my wits end and was hoping someone out there might be able to offer some advice.

I've suffered with pain since my periods started at 12, but by 18 I was still getting heavy bleeds lasting at least 10 days at a time and pain so severe I would vomit or at times pass out. After several doctors appointments I was given the pill but this made no difference. I started university just before my 19th birthday and began struggling with the somewhat hit and miss student's GP practice. I was passed to a different doctor every time I went complaining of excruciating abdominal, thigh and lower back pain, was given pain killers and even antibiotics and sent on my way.

It wasn't until last September that Endo was brought up as a possible cause though I was constantly treated as though I was complaining about nothing and that I should be grateful for the painkillers provided - one young doctor on the gynae ward even commented that it was 'all in my head' after I was hospitalized with the pain! For months I was fobbed off with codeine by my GP, there was no talk of follow up with specialists or any advise on how to cope with pain so bad that at this point I was barely able to walk.

On hospital visit number 2 in December ( a week after having a mirena fitted) without any explanation a doctor gave me zoladex and I was sent on my way. I'm now 20 and have just received my 7th dose of zoladex having spent another 9 days in hospital recently. The pain is the same if not worse than before and on top of that I have been suffering with a cripplingly low mood for months. I constantly feel tired and have gained weight despite dieting and being as active as I can, my hair is falling out, my joints ache and anything more than a walk to the shops 5 minutes away brings the pain back into focus. Whilst I have an amazingly understanding partner, this illness is really affecting my relationship - I wake him up at night tossing and turning, have no libido to speak of and when we do have sex I get excruciating pain afterwards. I feel guilty for my constantly bad mood - the slightest thing can have me crying uncontrollably.

Is any of this normal? Will it pass? This illness has made it almost impossible to work and I have already had to extend my degree due to the amount of times I've been unable to make it to lectures. My body doesnt feel like mine anymore - I feel like I don't have any control over my life as its ruled by the pain. I know there's no cure for Endo but anyone know of any ways to help deal with pain when it comes? Do you think I should keep having the zoladex? I dont want to spend the rest of my life on pain medication and I'm not ready to have kids yet (one doctor said pregnancy is the only way to cure it?)

Sorry for the ramble and thank you for reading - i'd be so grateful for any advice!

[Brownlow]

That's pretty appalling treatment. You are quite normal but suffering from undiagnosed symptoms. All the 'doctors' (I use that term lightly) you have seen are not normal.

There's something badly wrong with the medical profession. Patients should not be given drugs without being made aware of what they are and what the side effects can be. Zoladex is a drug that induces the menopause for as long as you take it. It is a very powerful drug that shuts down the pituitary glad and can cause side effects some of them longterm dangerous side effects such as memory loss, complete shut down of the pituitary glad, osteoporosis (although it is claimed this is reversible). The manufacturers recommend that it only be taken up to 6 months in a lifetime. You are already over the limit so please don't get this injection again. HRT (hormone replacement therapy) should have been offered to you as an option if you found the side effects difficult to cope with and to prevent bone loss.

Your hair loss, weight gain, joint ache, no libido, low moods, crying, bad moods will all have been caused by the Zoladex. Hopefully these symptoms will gradually improve when the Zoladex wears off. It can take a few months so go easy on yourself.

Pregnancy does not 'cure' endo. Some women are lucky and it does not return after childbirth.

The summer holidays are coming up. Is there any way you could go to a GP from where you grew up i.e. not one of the uni GPs? This would be a better route to getting the care you need. You could ask for referral elsewhere when you need to get scanned and also a laparoscopy to see what's going on. I'm assuming theses things have not been done.

The other thing you could do is get in touch with PALS about how you have been mistreated and get their help. nhs.uk/chq/Pages/1082.aspx?...

Go easy on yourself. You've been through a lot. Keep fighting and you will find a way through this. Sending you big hugs. xx

[tigergirl in reply to Brownlow]

Hi Brownlow,

Thanks for replying, i can't tell you how much finding this page has meant to me, knowing that other people know exactly what i'm going through!

I've been passed from doctor to doctor (all 'experts' i'm sure) the healthcare system in my area is terrible, I can't tell you the amount of times i've rung up consultants whose care I was apparently under to find out appointments i had been promised months before had never been made. There is an average of a 4 month wait for a gynae clinic appointment in my area though I have been waiting to see a pelvic pain specialist since November - my appointment is in 2 weeks. I rang up the other day to find they couldnt fit me into the right clinic and so will not get the physiotherapy I was promised I would get as part of my treatment plan.

Last time I was in hospital I was told I would be on zoladex for 2 years and they would consider HRT after 18 months - when i asked about the 6 month rule I was told not to worry about it and they would not answer any more questions. Ive had 4 scans (ultrasound and MRI) and a lap has been mentioned several times but I was told there was no point doing it until I wanted to get pregnant to reduce the amount of surgery I would need - no idea where this theory comes from, is there any way to challenge it?

Thanks again for your speedy reply - you've made me feel a great deal better already xx

[Brownlow in reply to tigergirl]

The pain clinic can often mean they are divesting themselves of their responsibility to diagnose you and treat you. The pain clinic will not 'treat' you and anything they give you will not get to the root of the problem. The zoladex is clearly causing problems.

Do your best to get very determined and push for a diagnostic lap.

Check the BSGE website to see if there's an endo centre near that you could get referred to. bsge.org.uk/ec-BSGE-accredi... or here bsge.org.uk/ec-BSGE-provisi...

You have the right to choose your specialist on the nhs if you can convince your GP that you need referral to an endo specialist. Do your best to find a decent GP who will listen.

Also try PALS.

[tigergirl in reply to Brownlow]

Thanks or the advise, got a GP appointment next week so going to speak to her about hurrying up with the lap and these nasty zoladex side affects - i'm at the end of my tether with the low mood, I started crying when i waved my other half off to work this morning for goodness sake! My GP is lovely just in way above her head with this stuff I think, so i'll look into finding a specialist. Unfortunately there doesn't seem to be any endo centres in oxford which is a little annoying but hey ho i'll find somewhere i'm sure. xx

[Brownlow in reply to tigergirl]

John Radcliffe hospital Oxford is a 'provisional' endo centre on this list bsge.org.uk/ec-BSGE-provisi... It is awaiting accreditation and they don't always get it. Otherwise you could consider traveling. There are plenty in London. I travel to London. Takes 1.5hrs to get to my specialist.

[Hidden in reply to tigergirl]

Avoid the provisional one in Oxford.... If you want more details, PM me x

[Brownlow in reply to Hidden]

Thanks Barbara. X

[tigergirl in reply to Hidden]

Thanks Barbara, yes my patience is wearing very thin with the oxford centre, think i'll try and get in somewhere in London xx

[sammy2009]

The pain is normal, I suffer from Adenomyosis and I had to stop college due to the pain. I got treated the same in the hospital as well so feel you pain and low mood from that side as well.. Ask your doctor to refer you to gyno and get seen there. I had to ask my doctor to do that last year after suffering for 10 years with the pain and hassle of it. I have had to leave college and can't work just now due to the fainting and pain. The way you have been treated is shocking and I wouldn't let it lie.

[tigergirl in reply to sammy2009]

Thanks for your reply, in theory I was under the care of a gynae consultant for ages but getting appointments was ridiculously hard and considering their specialty a lot of the doctors still seemed to think pelvic pain patients should just be able to grin and bear it. The way the health system treats us is unbelievably bad considering such a large amount of women have these problems, I don't see why it is so hard for us the be treated with respect and sympathy as others with more visible illnesses are.