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Endometriosis UK
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Hi, this is my 1st time in a support group of any kind. I have grade 4 Endo, i've been through the house a bit over the past 2 + years with my doctors & hospitol with loads of operations etc to remove varius bits including tumour. Feel at wits end when they tell you that your insides are soo messed up yet they can't do anything due to it being soo bad & if they did I would end up with stoma bags.

6 Replies

Hi there,

So sorry to hear you got such extensive endo and been through so much. That must be so hard to hear those words that your insides are so messed up they can't do anything. That is my biggest fear!

I had a Laparoscopy in June 2014 by a general gynae and was told I had severe endo and everything is just one big lump and she didn't dare touch anything.

I think this is due to endo but also due to my history. As I was born with cancer which affected all my internal organs apart from heart and lungs. The organs were stuck together then and the drs told my parents that they only managed to separate what they could. So I was shocked but also not surprised by what the gynae said in 2014.

I am now awaiting a diagnostic Lap and removal of cysts, right ovary and tube by a BSGE centre so they can give me a detailed action plan. But I am scared and fully expecting to receive the news you unfortunately have: that nothing they can do! Stoma bags are also a fear of mine too. BUt I am also hoping that as they are specialists then there may be hope.

Were you being seen by a BSGE centre? If not maybe worth asking for a referal as maybe they can offer more hope for you. x x

Hope you have people near you that are understanding and supportive. And you have people who you can talk openly to, be it someone close to you or a counsellor.

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Hi sorry i've taken soo long to reply. It so hard dealing with things & with little help.It sounds like you have been through soo much. Plymouth is not a BSGE unfortunitly.My nearest is in Truro which i'm waiting for a date now to go in.


No need apologise bless ya. Hope you hear about an appointment soon to see the BSGE in Truro. My referal to my local BSGE went in January 2015 and the 1st appointment wasn't until May...but that is good compared to some I have heard waiting even longer. But then it was 6 month wait for the op.

Unfortunately my op in Nov 2015 they couldn't do all wanted as too much of a mess and would have been too risky to carry on at that time,esp as didn't have bowel surgeons with them and would have been total hysterectomy and bowel resection with stoma. They know we not got kids and IVF is currently postponed with frozen embryo's. We been told to go to IVF centre ASAP and see what they say. Which we have done. IN total we have a 20% chance of pregnancy but higher risk of miscarriage and ectopic pregnancy. They had some queries too and if can get answers to them and our own concerns and we then happy to try IVF then they happy to try.

We are waiting to see Obstrician in February to talk about pregnancy and how my body manage and risks and if realistically any problems could be dealt with due to mess my body is.

I am feeling very mixed about which way to go, try IVF and the risks of pregnancy or say no, been through enough and not going to risk it and in turn say no to having our own biological child, I can't commit to either and not sure how I will find strength to decide one way or the other. Plus I am super scared by the big op the BSGE centre has told me is my only action plan and that it will be major and risky and with the outcome of stoma!

But even how bad it all is, I am not surprised at all with all the news I have had to take in and try deal with.

Sorry I have managed to babble on yet again!

I'm sorry to hear you are struggling and not getting much help. That sucks. It bad enough having to live with this evil endo, but to not have much support as well is terrible. Big hugs x x Again I really hope you hear from your BSGE soon and they can give you answers and a treatment plan to help. x x x


Wow it sounds like your going through a lot.I wish you good luck & hope it go's all ok for you. Endo is horrible. It's like an invisable disease, yet there is soo many of us who suffer.

I have since spoken to a few people at my BSGE including the endo specialist nurse & she has agreed that I need a solid date for my operation so I can start planning things. I have to have 3 months of these injections for the endo & do a full bowel prep cos it's a big op. i'm having a section of my bowel removed & stoma fitted & full hyaterectomy with some other things. I'm dreading the long stay in hospitol. Hopefull for a call soon from the hospitoll.


It is definitely scary to have to face a big operation like that and not only the op but recovery too. Bowel prep alone it horrible and not something anyone of us want to go thru and def not before an op too! Glad you getting some answers and a treatment plan in place. Best of luck with it all and hope it manage to give you some relief from the endo after having all that done.

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Thank you


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