No support

[amylou79]

I feel so alone. I have nobody to talk to about having endo. I don't know if what I am going through is normal?

I have had this for 8 years, and I have been diagnosed. I just want to be able to know if its normal to be in pain, and have other symptoms?

I am on no treatment now. I am just in a bad place at the minute.

[Starry]

Huge hugs XX X X Endo can put you in a lonely place. You should be on a treatment plan so if it is not working and it's long term them it is time to go back to your GP , revisit treatment options and get a referral to BSGE .

We are here as is the media helpline for support. X

[Hidden]

I would agree entirely with what Starry says, there should be some plan for your treatment. I would go back to your GP and explain your symptoms and ask for a referral to a BSGE centre. Their website will list the ones closest to you. Xxx

[heatherburt]

I'm the same as you. ☹ i cant go on like this I'm off work as i cannot do my job due to the constant pain. Tramadol does not touch it. And makes me sleepy. I drive to houses as i work in care. Can i get help with benefits ? I'm a single parent renting .i get a little housing benefit but can't survive on ssp x

[Mariec7]

Sending big hugs your way. A lot of us here are or have been in your shoes right now. I started my period at 7 years old with little advise or help and I am 35 now with an array of gynae issues. It took over 10 years for me to be officially diagnosed with stage 4 endo and I went privately to get the diagnosis to skip the whole GP referral process. I was suffering too much and my GP was dragging it on and next thing I knew the years had passed me by. I did have open surgery and I have changed my diet and both these things have helped me. It's never going to be perfect but I know if I binge on bread that it will flare up my endo. There are things that can be done to help so please don't feel that you are alone. Endo is a horrible silent disease. I litterally have crawled across the floor to get my pain medication wishing for it all to be over. I am 35 now and I have armed myself with as much knowledge on endo as possible so I can just live a normal day. Forums like this are great for advise but I would also highly recommend looking into dietary changes if you haven't already as this has been so important for me and also some complimentary treatments. I do get flare ups and sometimes I blame myself "I shouldn't have eaten that Biscuit" etc but that's not being kind to myself. You have to be kind to yourself and reduce any worries and stress. It's a lonely disease to have and some GPs aren't always helpful. I would do some research so if you choose to go back to your GP they can better advise you on what to do next and you can direct your questions effectively. If your GP is crap ask to see another one. Just don't do what I did which is leave it and suffer in silence cause a GP won't refer or take you seriously. I hope our responses help a bit and that you don't feel completely unsupported xxxxx

[Hidden]

It's normal to be in pain from endo. There's tons of symptoms that it can cause as well.

If I were you I'd look into getting on a treatment plan to help manage your symptoms and slow down the growth.

If you need to talk I'm here.

Best wishes x

[Hidden]

You are definitely not alone!!! I'm part of FB groups too and I can tell you we are millions!!!! If you ever feel down, you can always post on here or on those FB group, the best UK one is Endorevisited UK. I learnt so much!!!!! When I then decided to create an Instablog on instagram about endo, I discovered again that sooooooo many women have special endo accounts! you can reach out to literally millions of endosisters and endowarriors 💪 I understand you can't really talk about endo to friends and family so knowing that support is on social media, which we consider part of our lives anyway, it does feel better as you really understand you are not alone 💪💪💪💪