I should be pleased...

[Rufio]

it's not cancer, so why do I feel so miserable?

Let me explain. My endo story started when I stopped taking the contraceptive pill in 2010 as my husband and I decided we'd like to start a family. After a couple of months I had pain in my pelvis around the time of my period that was not touched by painkillers. It got worse each month leaving me pacing up and down for hours waiting for when I could take the next round of painkillers. I went to the doctors who prescribed me some stronger painkillers and told me not to worry it was probably being on the pill for so long masked my "period pains". I tried the painkillers, they made no difference, the pain was getting worse. One of the worst days I spent crying and howling in pain, unable to move, getting so desperate I rang NHS Direct see if they could suggest anything.

I went back to the doctor who sent me for an ultrasound expecting to show nothing. The scan showed a 10cm cyst on my left ovary. The general conscensus was it was probably endometriosis but cancer couldn't be ruled out. I was sent for a blood test and an urgent gynae appt. The gynae basically diagnosed endo, started me on zoladex and scheduled me in for a lap.

I had my first lap in january this year. The cyst they removed consisted of endometriomas and a borderline ovarian tumour. I was also told there was endo on my ureter which was too risky to remove surgery.

As I am 30 with no children and desperate to start a family, we decided I would not be having all my reproductive organs removed at this time (borderline tumours are not malignant but do reoccur and could become malignant if left for long enough). I would be kept an eye on with scans and blood tests.

All too soon that familiar pain starts to return, admittedly no where near as bad as pre-lap. I had my sceduled tests to find another "complex" cyst on my left ovary.

This time I was referred to the specialist gynae-oncology hospital in our area. And so just over 2 weeks ago I had my left ovary and omentum removed and biopsies sent.

The hospital rang me today to tell me the "good news" - the cyst was not borderline or cancer it was endometriosis.

And of course it is good news that I haven't got cancer. But it just reminds me that I will never be rid of this disease. The future feels so uncertain and I feel so bloody miserable. We're only half way through the year and I've already had 2 operations this year - how long will this carry on? Will I ever get pregnant and have the family we've been dreaming of?

I know I have been swiftly diagnosed and have not suffered for many years like a lot of women and I am fortunate in that respect. It just feels like a life sentence, a never ending mountain to climb.

[hopefully]

Dear Rufio,

I understand your post, we should be pleased its not cancer, no one would want cancer but with endo it is easy to sink into a feelin like this, why me and when will this be over.

Recently I have learnt that this attitude when will it be over only adds to the misery.

I have been on the forum a few months now and although I still have a feeling of OH MY GOD why ME? I have come to realise that there are many others in the same boat and I went for counselling and I am trying to come to terms with the 'new' me, me with endo, the healing process is more a mental battle over the physical symptoms, rehab been reading about living with chronic conditions I have found that by understanding the problem it is a step to me gettin over the problem.

Sometimes I am soooo depressed and cry for ages, because I want a family, and I feel at a dead loss with the medical professionals. But I cannot go on like this, I could just drown In tears.

Being on the forum with others has made it clear to me that the show must go on and I cannot be defeated by my fate, it was written for me to have this condition and it is a test upon me to see how I deal with it. I always focus on what I don't have but then remember what I have lost and what I cannot do. I start to feel sorry for myself and it's a downward slope.

When I read of others who seem much stronger, I know that I too can get through this because we are cannot be tested with what we cannot cope with, although at times the sickness can get the better of us, we need to focus on what we can do, so ok of I can not walk well but every day many people run businesses from home.

Imagine finding out about the endo is the beginning of the road to recovery and try to focus your energy and feelings on what you can do and what you do have, and the opportunities that you have which you did not know about before.

Endo for me has been a blessing in disguise I do not know what blessing exactly but I know that there is a reason for everything.

[Rufio in reply to hopefully]

Many thanks for your reply, it is comforting to read your words. It has been a rollercoaster journey and i still have much to learn. It has made me look at what I've got and be thankful that I have a good life with fantastic friends and family and it has all made me appreciate them more.

But there are dark days, and I guess there always will be. Yesterday was a bad day. But posting on here goes some way to helping, knowing there's people who understand how you feel.

Today is another day and the mountain doesn't seem so high and I'm saying "bring it on!"

Thanks again for your reply and I hope you continue with your positive attitude.

[Aquitaine]

Hi -

I had 6 cancer tests this year... and each one came back negative. But every time, there was tons of stress and worry, but I never really felt the overwhelming relief I thought I should have with the results.

So no, you don't have to feel pleased it's not cancer. Sure, it's good news, but nobody can tell you what you should, or shouldn't feel about your body and your endometriosis.

You've been through a lot, and you're worried about your future. I think a lot of us feel pretty overwhelmed by endometriosis from time to time. So don't punish yourself for not being grateful. Be kind to yourself - you deserve it.

Good luck for the future, and I hope that endometriosis doesn't come in the way of the life you want to lead.

[Rufio]

Thank you so much for your reply. I'm so glad I joined this site, the support is amazing and inspirational. It's so good to hear from people who understand how you feel. Your words mean a lot to me, thank you.

[worth71]

i know what you mean, its not that we're wishing for any type of cancer, of course not - i had a biopsy on the lining of my womb last year, the hysteroscopy was only my second thing i had done, the results came back negative but it wasn't that i wanted it to be cancerous or pre-cancerous, but i think in our minds we think, if it is, then we know what it is, deal with it and move on (i know cancer patients aren't always that lucky) whereas with endo, it seems it is a constant limbo, i haven't even had a lap yet i'm still fighting for one, but from what i see even once diagnosed it can only be treated so much and it never really goes away - so in my mind i keep telling myself its not endo, i really do not want endo, even though that's what all the docs keep saying it most probably is xxx