Endometriosis UK
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Sick of the pain, sick of waiting, sick of it all!

Well I'm on the waiting list again for surgery as the IVF clinic suggested I have my tube removed before we start treatment. But typically it's not going to be straight forward. In the words of my doctor it's major surgery because of the extent of my Endo. He said he would try and get me in ASAP but as he wants to operate with a gasto and urology team it may take some time to organise. In some ways I'm positive that we have a plan but I'm just so fed up. I feel that people are losing patients with me now and are not as understanding about how I'm feeling than they were when I was first diagnosed. When I have my week of agony I dose myself up and go to work as normal but sometimes I think that doesn't do me any favours as people think my pain can't be that bad if I'm going in. But they don't realise I'm rattling with all the pills I've taken and I just want to curl up and cry. Sometimes I think I should go into work without the pain killers so they can see what it's really like!

What I find odd about myself though is that I seem to battle on when my symptoms are at there peak but about half way through the month when I just have the general aches and pains I seem to have a bit of a melt down. Does anyone else or is it just me?

I think it's more of the emotional stress that gets to me, the tiredness and the not knowing what is happening or what will be.

At the moment every morning when I wake my hips and legs just feel really tight and ache and its difficult to know if its down to the Endo or not. My abdomen does swell quite considerably and I have read that painful hips and back can be due to how women with Endo hold themselves because of pain and swelling. Has anyone else found this?

I just feel like this is going to be a never ending journey. I'd come to terms with the fact I'd need IVF and then major surgery to clear the Endo at some point but I wasn't prepared for the major surgery I'd need before the IVF to just remove a tube ??

I get married in April and I can't even go dress shopping cuz I don't know when I'll be having surgery or IVF or if I'll have a colostomy or even be pregnant. It's just crazy to think there could be so many different outcomes.

3 Replies

Hi nat, I can't have IVF due to the fact my partner has 2 children from a previous marriage but I was left with the news after my 3rd laparoscopy 2 years ago that both my tubes are clubbed & we are trying to conceive. Despite all this though I can sympathise & relate to your leg & hip pain & I also get terrible back ache. I also continuously drug myself up with painkillers & carry on with my full time job & running a business on the side, but after 14 years of fighting through I often find that people around me don't take it seriously or don't understand how debilitating it can be. I posted a blog 14 years and counting earlier today if its any help to you xxxxxx


Hi Nat

I know sometimes the thought of your upcoming treatment can just blow your mind. I am a bit of a neat freak even when it comes to my thoughts in my head so to have all those different outcomes must be hard to deal with. There is no getting away from what's coming up with your op and ivf but why don't you wait for the time of the month when your not in as much pain get a couple of friends together and go and try some dresses on? It will maybe give you a day of putting Endo at the back of your mind, will hopefully give you some ideas with the different designs on how to hide a colostomy or if your pregnant to make you and a bump look stunning on your special day. Throw in lunch then your have a great day to remember when your feeling down or post op when your resting. Things like that just give you a little bit of hope. Good luck I hope things start becoming clearer soon. Have an amazing day in April. Xx


Thanks johewer and londongirl1. Think I've just let everything get on top of me at the moment. Feel so tired and seem to be getting all these new aches and pains and I guess it's worrying me that the longer I'm waiting for treatment the worse the Endo is getting. Just feel that I can't get excited about anything at the min. My work friends are planning all these nights out and weekends away and I find myself saying oh don't think I'll be able come because might be starting treatment so don't want commit myself to anything. But then that weekend comes and goes and I haven't started treatment and I haven't had a night out either. Just feel like my life's on hold. So think I need to do what you said londongirl1 and just organise a day and hope I'll be feeling well.

I just get so angry at myself sometimes though and feel a bit of a fraud because as rough as this condition can be its not something I'm going to die from....at the end of the day I haven't got cancer.


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