Newly Diagnosed...

[LauraK-R]

Hi, I'm new to this so sorry if this is in the wrong section or anything. I had a laparoscopy just over a week ago to remove a cyst from my left ovary - my second lap surgery as I had a cyst removed from the right ovary last year. This time they have also found endometriosis and removed what they could, and suspended my right ovary (any idea what this means?). I don't know the details of any of it cos when the surgeon talked to me I was full of morphine so couldn't really focus... I am seeing my GP tomorrow to discuss everything with her and extend my sick note. The diagnosis feels like a relief and a completely terrifying piece of news all in one, I have suffered for years and now it finally has a name to it but I don't get why it wasn't spotted in last years surgery? Also what can I do to help myself? I take so many pills for other things already (inc. contraceptive) that I kinda want to avoid drugs...any advice would be great!

[cupcakegirl]

Sadly diagnosis can be difficult - my first lap was clear even when they were looking fit it, although they didn't spend enough time.

It really depends where the Endo - in lots of cases it's underneath the womb and they have to move it out of the way to look which they wouldn't do unless they have a reason. It could be that your Endo has spread or that it's now more obvious (Endo can be clear and hard to see, like blisters).

The pill is often enough to manage your Endo as it prevents ovulation and therefore lowers oestrogen levels, and it reduced bleeding so that the deposits aren't bleeding which caused it to spread and adhesions to form.

Obviously in your case the pill hasn't stopped the Endo from developing, but it may have stopped it from becoming even worse. You may get better results if you take three packs back to back without a break so you bleed les often.

I know the thought of medications can be scary and there are things like diet and accupuncture that do seem to help some people. However, it's important to control the Endo as much as possible, which may mean trying a different kind of hormonal treatment otherwise it could cause more damage, affect your fertility or cause a type of cyst called an endometrioma which is filled with old blood - not everyone with Endo gets these, I've never had one, but if the cyst you've just had was an endometrioma, this would have told the gynae you have Endo and they would then have looked around more thoroughly. Less than half of women with Endo have difficulties conceiving so it's important to keep things in perspective, but also to be realistic about the potential dangers of not managing your hormones.

You may also need stronger pain relief as many sufferers do - I've been on morphine since 2004 and couldn't function without it. My advice would be to take the mildest pain killers that allow you to cope with the pain as this will hopefully mean you won't build up tolerance to these drugs as quickly.

Sadly diagnosis does take a long time (average time 9 years) but its good that you know now. Try to stay open minded about medications as they have clinical data to back them up whereas most alternative therapies are unproven.

It can be both scary and a huge relief to get a disagnosis so that's perfectly normal - you may find that the lap and the pill are enough to sort out your symptoms and mean you don't have any more problems. I hope that's the case but you may need more help - if so, do your own research and decide what's right for you. Hugs x

[LauraK-R in reply to cupcakegirl]

I hope it's the case too I have been reading about cutting out wheat etc, I saw my doctor today and she didn't really know much about endo at all so I just told her I'll try this diet for a while and if no improvement I'll go back and explore other options. I already take cocodamol 30/500mg and naproxen 500mg daily for other issues and I hate that I take so many pills already! The doc tried me on tramadol a while back for my other issues (knees + feet) which worked but I didn't want to take long term, I also took this once the morphine wore off after this last lap surgery, now back on my normal pain meds. I will take medications if I have to - I guess I'm just really hoping I don't have to

Thank you so much for your reply, I'm still trying to get my head around this x

[Cloudyrain]

I agree with cupcake - don't discount medication. Some women manage their endo brilliantly with diet and alternative methods, but it's almost a full time job!

I would recommend getting a book like Endo for Dummies and properly researching your management options before you make a decision. There is a lot of myths and rubbish on the net, so try and get the proper facts first.

Good luck x

[LauraK-R in reply to Cloudyrain]

Thanks - I didn't even know there would be books etc. I was kinda hoping to receive a bit more information from my GP but she didn't really tell me anything I hadn't already read on this charity's website. I guess I'm just wary of hormones, I feel like mine have been a mess for so long that I'm used to how they are, I think. I have a lot of thinking to do x

[Donna1979]

Hi

Just wanted to introduce myself I am new and my name is Donna and like yourself I had a laproscopy and hysterotomy ( excuse my spelling) last Thursday and my Gynocologist has diagnosed me also with Endo he did not tell me anymore than its endo and its on my stomach then he said he wanted me back in 6 weeks to discuss my treatment options which as kind of left me wondering a million and one unanswered question like how long have I had it how bad is it etc.

I have to say before this I did not really have a clue about endo or what it was, since my diagnosis I have gotta say I am devastated I had a molar pregnancy 11 month ago which resulted in a d&c and 6 months follow up but my pain each month has been getting worse with each month sometimes to the extent that I am in bed unable to move cause of the intensity of the pain. I went to my doctors who kept fobbing me of saying its normal, its due to the miscarriage etc until several months down the line I demanded an ultrasound insisting something was wrong maybe cysts. She referred me to the ultrasound which showed adhesion's I spoke to my doctor who said it could be ashermans and I was referrred to gynocology and they ordered the laproscopy etc, I have to say in a million years I was not expecting to be diagnosed with endo and I am still in shock I just wanted you to know though you are not alone.

[LauraK-R in reply to Donna1979]

Thank you so much. I was very surprised as well - I have been to my GP many times over the years because of my problem periods and tried so many painkillers, tranexamic acid types and contraceptives and no one ever mentioned the possibility of endo, yet reading up on it the symptoms listed match my own perfectly.

The talk of children is a confusing issue for me. I am 24 years old so not really family planning, and I have never, ever wanted children. I don't really like them. Yet finding out that the option may be taken away certainly makes you think about it more.I really hope you are able to conceive, it sounds like you would like to have a family so I hope the endo doesn't stop you.

Thank you to all who replied, feels nice to know I'm not alone. x