Just got back from my meeting with the Endo specialist in our area and I am so fed up. Have had severe pains for nearly 2 years, I'm off work every 4 weeks for a week and they have now diagnosed me with stage 4 Endo and I need part of my bowel removed. I really hoped that my specialist would have something to say today but yet again I have been fobbed off with crap painkillers and anti inflammatory Meds, been told I need to wait 2 months to have an MRI and then they will see about surgery. When we talked about having kids his only advice was to have lots of sex! Not a single other bit of advice or support. I am just so fed up.
I have signed up for acupuncture and reflexology but wondered if anyone has any advice. I really don't want to be signed off sick but everything is just causing severe anxiety and stress and I don't know what to do.
Sorry for the rant just don't know who else to talk to.
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Louiset0802
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I can really empathise!!reflexology is so good I found it helped me calm and relax a lot. I was given coedine for pain relief but stopped as it knocked me out so much. I want a. Family however the pain is so bad it's like but how can I make one!? I too have days off work and feel so guilty but sometimes the pain is unbeatable isn't it x
Thank you for replying its nice to know that at least I'm not the only one who just feels like I can't do any more sometimes. I really hope that reflexology will calm me down, even if I get one nights good sleep! X
It helped me sleep at one point I slept during! But if it helps and it made me feel alittle bit in control. I'm at the hopsital tomorrow and tbh not expecting much. Sometimes I feel like I know more than them!
He hasn't discharged you as he can't help. That's definitely something and he's booking you for an mri - a test that can actually see inside you. Normally we get offered ultrasounds which are worse than useless. I think being treated for endo means you are grateful for the smallest mercies. You have to focus on that. I am not surprised he isn't rushing to remove a section of your bowel. That is seriously painful and intricate surgery. Have you had any treatments to 'shrink' the endo, they love to do that before surgery. Be positive, it is moving forward and you have these other therapies to try and you might hit on success! It is painful and it is shit. Rushing around can't avoid that
In terms of fertility, that is actually the best advice. They don't know whether your fertility is affected or not. Once you start trying they can know if you can concieve. If within 6 months you haven't then they can start to look at why. It sounds like your periods are regular so I can't see why you can't try. Do be careful which painkillers you take as some can affect implantation. Yes it will hurt like hell coming off all hormones but you never know - a baby could be your solution. It could give you years pain free.
All you can do is be positive there is nothing else with endo. I wish you all the best with the alternative therapies! Is there a reason you're not trying yet? X
Thanks endopains. I think sometimes I forget to look on the bright side. We have been trying for 6 months since my last operation which is why I was so grumpy but he said he isn't going to fast track us for anything yet. I have had 2 laps before and tried hormones but they just made me bleed all month and very depressed which is why I had to come off them.
You are right though an MRI is a step up from everything I have had before and this is what I need to focus on. I'm just always looking for a miracle cure and I guess I just have to get my head around accepting that I'm ill and any help is worth getting.
Endometriosis has taken away my patience big time and I am always having to scrape myself back up off the floor. I just think it's nice when someone says that thing to help you back up
So what hormones/testing have you already had? There are tests that you can have at your GP. I was told I couldn't have children twice and I am sat here pregnant while my 1 year old plays with duct tape. Patience levels improved there is hope xxx
Hi, I had an MRI before Xmas, as like you, my bowel is involved. My specialist said the MRI will help him see exactly what would be involved in surgery and how likely I am to need a bowel resection. I'd had a lap before, but everything was so stuck together the surgeon couldnt do anything. I know its crap, but try to take it one step at a time - at least he's agreed to an MRI, which is a step in the right direction.
Thank you for replying. It was really good to actually have the positives pointed out, I spent all day yesterday feeling sorry for myself when actually they are doing something. It wasn't a quick as I had hoped, but it is more than some people get. Trying to focus on the good things today. I really appreciate the support.
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and he's booking you for an mri - a test that can actually see inside you. Normally we get offered ultrasounds which are worse than useless. I think being treated for endo means you are grateful for the smallest mercies. You have to focus on that. I am not surprised he isn't rushing to remove a section of your bowel. That is seriously painful and intricate surgery. Have you had any treatments to 'shrink' the endo, they love to do that before surgery. Be positive, it is moving forward and you have these other therapies to try and you might hit on success! It is painful and it is shit. Rushing around can't avoid that 
Feeling disappointed
Feeling fed up and frustrated
4th Lap no Active Endo, but bowel stuck to abdominal wall, anyone else had this?
Can GP refer you to a BSGE centre EVEN THOUGH GYNE SAID NO
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