Completely losing the will to fight battle recently!!

[ADeeL91]

Hi,

I'm not sure if this is the right place for this, but I feel so alone right now. Like I'm stuck in a hamster ball just running trying to stop myself from falling over and being thrown obstacles in the way. And I'm the one throwing them there.

Yet again I'm on the toilet crying because I have another 'UTI'. In the last three years ive now had approximately 40 separate bouts. After cystocopy, ultrasound and countless blood and urine tests they put it down to my endo. Which during my diagnosis lap is on my bladder. Apparently my surgeon had lasered it. Which gave me three months of painless toilet trips. But now it's back with a vengeance, I've had 2 hours sleep in 48 hours because I can't get off the loo. Then when I did manage to sleep I wet the bed.

This is because I seem to have angered by endo by having sex two nights in a row. Usually I'm wary during intercourse about the angle, roughness, time. I also have endo on my uterus, around my cervix. But after Edward scissorhands monthly visit I'd been completely out of action for two weeks and got abit lost in the moment. I've only been with my boyfriend 10 months and we are very much still in the honeymoon period.

I'm so fed up. I'm currently a student at open university. As I previously went on a full time course and found I missed alot of lectures because of endo pain. At 23, I feel useless. I can't even work because of the amount of time off I need. The pain gets so bad I'm forced to dose myself up on morphine just so I can sleep atleast 1 week a month. And it barely touches the pain.

After my lap I was told they'd manage to laser most areas. But I think the lap just made it more aggressive because I'm worse than ever. I've had depression for a few years, after various events in my life. And I can feel myself slowly sinking back into it. Only this time I've no silver lining. There's no escaping my own body. I just feel so low. I hate being like this. I'm usually a happy smiley girl. Make the most of my time between flare ups seeing family & friends. Studying & being a football nerd. But recently I can't even be bothered to do that I'm so scared niagra falls 2 is gonna erupt or I'll lose control of my bladder whilst laughing at my friend checking out her new flavour of the month (wouldn't be the first time). I mean I've not even had a child and done my pelvic floors daily since being 16, I worked hard not to be a tena lady before I'm 60.

I feel like there's no end to this. I'm always going to be a slave to it. I've tried alsorts of tablets, home remedies I've found on the Internet that never work, but short of being a cranberry eating celibate ridiculously hormonal dosed up zombie I can't think of a way I can stop letting it rule my life.

Apologies for the too much information, couldn't stop myself once I was typing.

And now I'm not even sure what reply I'm looking for. Unless you've got a miracle cure. I definitely wanna know about that. I just want to know I'm not alone. Or maybe I am and need to man up. Either way I'd appreciate your thoughts??

[Sam341]

You really need to go back to your GP and ask for a referral to an endo specialist. You cannot keep going like you are. Even ask for a second opinion. Go to your Dr every time you are like this and hopefully someone will listen and help.

I am in a position where no one is helping me and they have left my endo. It's hell and turning me into a moaning, grumpy, pathetic person and I have 2 kids who don't have their normal mummy to care for them.

It sucks

Hope you feel better soon. And don't let the Dr fob you off!!

[confusedandworried]

Hi I'm so sorry to hear you are going through this and at such a young age. Do you live in the UK? If so, I think you really need to be seen by a BSGE accredited endo centre.

If you have only been seen by a general gynaecologist, which it sounds like you have, then the chances are they have missed endo and/or have only burnt off endo using a laser rather than excising it (ie cutting it out). Burning endo is usually only effective in the early stages of the disease but not for more advanced, deeper infiltrating endo. Such endo needs to be removed from the root otherwise, much like a weed, it tends to grow back in the same place.

If you are in the UK you have the right to request a referral to an endo centre and you can locate a centre at the following website: bsge.org.uk. If necessary take a friend or family member with you to help support you and push for such a referral. Keep a daily diary of your symptoms as this will be useful for your GP in making the referral and also useful for the endo specialist you end up seeing.

Sadly there is no miracle cure for endo, it is a life-long disease for many and needs careful management. Whilst hormonal treatments have their place in managing endo symptoms, for most surgery is inevitable and excision surgery is considered the gold standard in the treatment of endo. That being said it is also important that women limit the number of surgeries they have in their lifetime as all surgery carries risk but abdominal surgery carries the additional risk of potentially causing adhesions and scar tissue which can cause pain and other issues in themselves.

As such it's important to find a way to manage endo symptoms. Eostrogen plays a significant role in endo so following the endo diet can help with this. Furthermore, I know from my own experience that reducing stress wherever possible, eating healthily, exercising daily and maintaining a healthy weight that these can all have a positive impact on symptoms.

I aslo watched an interesting video posted on this forum of an Australian endo specialist who said that for some women pelvic floor exercises can exacerbate pain in the pelvic region and these women had to learn how to "down train" their pelvic floor muscles which in effect were spasming. It might be worth having a look at the video. I don't know the link for it but the video was entitled "Endometriosis and Pelvic Pain" by Dr Susan Evans for Women's Health Queensland Wide. Maybe google it or look on YouTube.

The other thing to consider is another condition called interstitial cystitis which sometimes co-exists with endo and could also cause some of the urinary based symptoms you mentioned. Again though if you are referred to a BSGE accredited endo centre they will be able to rule this out/diagnose it.

Best wishes, Jo

[ADeeL91]

Thanks to all replies. Spent the weekend being dosed up. I've just walked out of my gp appointment feeling extremely frustrated. His only response was that if I'm that bad I should take myself up to a&e and be sent up to gynaecology. Since I have an appointment with my consultant at the end of the month there is nothing else he can suggest. So I've been left alone yet again.

When I asked about a specialist he said that the team at RPH are more than capable.. It's just a good thing I've got amazing people around me who make me realise: Yes, I have endometriosis but I'm so much more than that. Otherwise I doubt I'd get through another week of this. Why do most medical professionals still not recognise endo for the disease that it is.

[charms267]

H ADeeL91, I'm so sorry that you are suffering so much. If you GP is being unhelpful, remember that you have the power and the right to ask to be referred to another hospital. He HAS to refer you. I had to do this myself and I think that it goes a long way in helping you feel that you have some small degree of control over your life.

The endo pain that us endo girls suffer is no easy thing to deal with. I think sometimes its good to "throw our dolls out of the pram" and have a good old cry. It really does you the power of good. Then we pick ourselves up and start to push forwards again, at the end of the day its all we can do. Try and be patient and kind to yourself. Trust that through all this, you are not alone.

I am trying to hold down a full time job, whilst being doped up to my eyeballs on morphine. my only saving grace is that I work from home and that helps masses.

I'm sending you lots of gentle hugs.

Keep fighting on hun xxxx