Feeling scared and alone

[coucouHS]

So I've recently been back to the doctors as my symptoms have worsened significantly over the last 3 months. The good news is that after much pushing, the doctors are finally referring me to the right people for some help.

The thing is, is that I feel so alone. I don't have any support system. Any time I try to talk to anyone, they brush it off and move on, even those closest to me, like what I'm going through doesn't really matter. In reality, I'm so terrified and I can tell that bottling it all up really isn't helping me process it all, but I feel like I have to pretend like everything is OK which is exhausting.

Has anyone else been through something similar and can give me some advice?

[Moon_maiden]

Hi

Most here have had similar feelings, you definitely aren’t alone.

Sorry you’ve had to push for referral, glad you’ve got one now 🙂

The Endo UK site has some great info and webinars on their YouTube channel, worth checking out.

The forum is good for venting, we’ve all done it at some point.

Are you managing the pain?

[coucouHS in reply to Moon_maiden]

Thank you for your reply.

I've joined my local support group so I'm hoping I'll meet some people and start feeling better.

I manage my pain as best I can. I'm on Zapain but can't take them when I'm working because of how sleepy they make me which makes getting through a 12hr shift unbelievably difficult sometimes. I have CBD chocolate which again I can't have when I'm working so I'm in a bit of a rut when it comes to managing it at work.

[Moon_maiden in reply to coucouHS]

That’s great, the local group will be helpful for you.

Have you told work? The Endo UK site has a leaflet you can print to hand in. I’d also recommend speaking to the gov organisation ACAS, they are there for employment advice and can help you to talk to work about managing the condition within the workplace. Conditions aren’t listed as disability it’s more symptoms and back up you can get from GP. Your Dr can help with fit notes specifying if it’s hard to carry out certain tasks, ACAS can give you the right legal advice. Make sure it’s the free organisation as there are companies that charge.

[635703]

Hi,

I am so sorry that you feel alone in all this scary health stuff. I recommend Henrietta Nortons book how to control your Endometriosis as a good starting block because there’s lots of things you could try to help your body. It provides a gentle look and empowers you with information.

There might be an Endometriosis UK group near where you live, search on Facebook or you can ask a moderator on here to help you find it. You might be able to meet with someone and have a coffee? If you and they are well enough.

On Endometriosis Uk website there are times and dates the helpline is open and you can talk stuff through there but they don’t give medical advice. They’re so lovely and helpful and really make you feel heard.

Sending you lots of love and you’re not alone here. Once you know more you can then start to discuss with those close to you.

I have had a Partner who couldn’t cope with my medical stuff and I left. Now I have an absolute gem who gets it 😊 and we’ve been together almost a year now.

Take care and we are here - you can DM me if you want to and if not, that’s okay 💗🫂

[coucouHS in reply to 635703]

Thank you so much for your reply.

I've now joined my local support group which is a positive step I think.

Just hearing people say they've been through the same thing makes me feel a bit better. I had no idea how isolating this disease can be.

Again, thank you so much.

[635703 in reply to coucouHS]

you’re welcome and it’s very isolating and that’s why we check in with each other now and again x Glad you feel a bit better and hope you get the support you deserve from the community x x x x

[Pinky_37]

I have felt exactly the same. I’m now 44, have 2 children and have literally (4 weeks ago) had my 4th surgery (exision, bilateral cystectomy, rectal shave and more). My husband has been great but I’m a keeper inner… I don’t discuss it with anyone else. I even used to hide my pain which was basically all the time.

You’re not alone, you have many support groups at hand and plenty of advice in books. It’s not always possible to have a friend or family member to talk to. Reach out to anyone including us guys. Talk to your doctor and or specialist and they should be able to guide you to a local support group. Once you realise you’re not alone you should start to feel a little better.

[JOSANDY40]

Yes, we all have felt those feeling at somepiont. Firstly you need to come to terms with this disease. For me it's always been me against it! I found strength by making times work for me rather than allowing this disease be the boss of me! It's easy to worry, it's more about controlling over thinking! Painkillers give me a break, Yoga, TENS Machine. A interesting thing I have learnt is to distract the brain by telling it :- The sky is beautiful today. Forcing large smiles and laughter in the mirror reinforces to the brain happiness, overriding its control of me. These exercises must be done for 5min+. regularly. Yes it's a lie but it does help. I remember when I 1st started this I thought it was stupid. Scientific on scanners has shown the benefits. Control light depression.

[CCWildSwimmer]

I’m so sorry you feel like that! As others have said, the endometriosis uk site has some great resources. Also, it would be worthwhile discussing with your go whether there can refer you to a pain management group. Please also be open about how you are feeling with your gp as there are maybe other things that can help also. I have been diagnosed with depression as a result of the pain etc that I have been experiencing and I think that can be quite common; I have found that therapy sessions with a phycologist are extremely helpful, although these have been funded by the private medical insurance that my work provide. It would be worthwhile asking your go what options are available for you to help from a mental health perspective; whether you have depression or not.