Hello 👋🏻

[singingelephant]

Hi there,

This is my first post. I’m feeling a little sorry for myself lately. Keep trying to stay positive and think about how my situation isn’t the worst and how I should be grateful. Only, I can’t feel grateful, I am really fed up of being let down my the system and really fed up of being in constant pain. I’ve had 2, maybe 3 days of feeling normal this month and now I’m back to being back in pain and feeling miserable.

What’s worse, I haven’t had my diagnosis, I am on the waitlist and have been since the beginning of the year. I’m not likely to get my laparoscopy date until end of this year/beginning of next.

How do you cope with knowing that this could be your life? Knowing that there’s no cure for what is going on with your body?

Sorry for being sad on my first post, I’m just feeling a little lonely with it.

[Mylovepari1]

Same here.I am in too much pain and feeling lonely and depressed now.I was complaining about pelvic pain from last one year had all the anal tests and now they said me last week that I have endometriosis .I am in pain from last year and now I don't know how much time I have to wait for the treatment .my life is hell from last year too much suffering and feeling stupid of not understanding before and asking my doctor to make my appointment with gynaecologist I wish I had made this appointment before one year I was stupid of taking medicine for anal pain .Now I am fed up I don't have energy always negative thoughts come in my mind.please help me.

[singingelephant in reply to Mylovepari1]

You are not alone. It is such a mind numbing illness. Just be sure to talk to people. If you need help, ask the doctor to refer you to a councillor? It will help to talk it through. Hope you’re ok

[Mylovepari1 in reply to singingelephant]

is there anything which I can buy from pharmacy for this depressing feeling due to endometriosis so that I can relax and sleep as I am not getting enough sleep from one year which is making me more nervous with the pain.i asked my gp and got a reply that they can give only painkillers for some relief. I am taking only painkillers now with no effect and waiting for my treatment.

[singingelephant in reply to Mylovepari1]

You’d have to be prescribed some antidepressants from the gp. They may help. Try some kalms or herbal tea before bed too.

[Completer40 in reply to Mylovepari1]

Try some beta blockers rather than anti depressants if they are suitable. They take the edge off the anxiety x

[Mylovepari1 in reply to Completer40]

can I buy beta blockers from pharmacy without prescription.

[Completer40 in reply to Mylovepari1]

No you will have to see your doctor but if you explain I'm sure they will give you some if they can x

[Completer40 in reply to Mylovepari1]

You're not stupid. We have to rely on medical professionals and what they tell us. Be kind to yourself. Just be aware that they don't know as much as you think x

[EndoJaz]

It took me a long time to resign myself that there is no cure for this and no answers or support, it really hit me and I cried so much but it’s the awful reality. Best is you find a treatment plan that helps with the symptoms. I am also feeling down and have had enough as are many women on here. It’s so tiring. People don’t get it at all unless living with this. This page has helped me so much as we are not alone and we get so much advice from others, a huge help and I don’t know how I would have gotten thru the past few years without having you all on my side 😍xx

[singingelephant in reply to EndoJaz]

Thank you so much. I have been following this page for a couple of weeks, basically building the confidence up to post. But it seems like a really supportive place. I just hate that the support from professionals is lacking so much! Xxx

[EndoJaz in reply to singingelephant]

I know it’s disgusting isn’t it. All the wasted years of being fobbed off just makes me so angry. I try to spread the word and raise money for Endo uk as them I feel I am doing something. They have small collection boxes that you can put in your workplace or anywhere which soon mount up. Xx

[singingelephant in reply to EndoJaz]

Yeah, it’s so bad. I didn’t realise until 2019 that I had possible endo. Until then, I’d been fobbed off, given every pill, coil, implant and now I’m on nothing and it just isn’t great😂 well done for doing all you do x

[EndoJaz in reply to singingelephant]

Yeah they are trying to convince me grnh injections are the only option left for me but I can’t deal with anymore at the moment and the side effects can be bad and I’m not good with medication. Currently on naproxen and occasional amitripyline for sleep. Keep fighting for help. It took 4 yrs for them to believe I still had it after hysterectomy and was told it’s in my head blah blah. Male drs 😡 xx

[singingelephant in reply to EndoJaz]

Oh that’s awful. They tried to convince me of a mirena coil instead of actually diagnosing me. Any extra hormones give me migraines. Plus, I was on the copper coil but after having had 2 slip out of place I’ve decided my body doesn’t like them😂. Doctors can be so bad at times! It was actually a male gp that suggested I look up endo, crazy xx

[Completer40 in reply to singingelephant]

In my experience the female consultants were heartless and poor at their jobs. I owe a lot to two male surgeons who helped me

[Completer40]

Hi lovely, reading this made me sad. That's how I've felt for years. I finally had a hysterectomy last year and I just feel grateful that I could take the bits out that were causing so much pain.

It's so difficult, I was exactly like you, only felt okay a couple of days a week when it was really bad. You need to keep pushing them or nothing will happen. Complain, lose your temper if you have to but get the care you need. As soon as you have a laparoscopy and get a diagnosis it's much easier from there. You will know where you stand and have the proof for doctors and surgeons. Waiting til the end of the year is not good enough, maintain that you need a lap urgently. Hope this helps xx

[singingelephant in reply to Completer40]

Thank you. I think I’ll call the doctors again Monday. Just feel like I’m getting worse. Constantly bloated which doesn’t help my mood. Can’t even remember what my normal tummy looks like at this point. I really worry about my fertility too as I’m only 25 and I do want kids, not quite at the moment but in a couple of years definitely. I hate having to fight to be seen because I feel like I’m wasting their time 🙈 thank you, your message definitely helps cxx

[Completer40 in reply to singingelephant]

I'm so glad to hear you're only 25. I was 35 before I got a diagnosis and it was too late for me then and I'd already adopted my child. You've got time on your side, just make sure that they hear you before it's too late. Xx

[singingelephant in reply to Completer40]

I have been back and forth from the doctors since I was probably 15/16 about my periods and headaches. It was only when I was 23 that a doctor at a minor accidents suggested it could be endo and then it’s taken ages for the gps to take me seriously. They kept putting me on treatments for piles and fissures which, it wasn’t haha.

Lovely to hear that you’ve adopted. Me and my partner have spoken about that being a possibility in the future if we couldn’t conceive xx

[Gardenist]

Hello I can understand where you are coming from. It took me about 20 years to be (almost) at peace with my lot. Things that helped me were lots of research about the conditions so I really understood everything. Working out nobody but me really cared about the detail and so organising my life so that I could live the best one I could without guilt. And lots of trial and error.

In practice this means I try to treat the body I have the very best I can. And it has really helped reduce the length of time of my pains each time (I'm on a 3 week cycle with period and ovulation pain that incapacitates me) and how much resilience I have to deal with it. I've changed my diet to an anti inflammatory one. Do pilates and lots of walking. Sleep trained so unless there is something really special on I'm asleep 10pm -6am every night. It was/is boring but I feel so much better in myself (sadly still in pain) that it's totally worth it. I'm really enjoying life on the terms my body can cope with. If you haven't tried a tens machine for pain I'd recommend that. It takes the edge off. And a combination of heat and ice pack helps me too. Taking anti inflammatory painkillers before I know I'll be in pain, I've been keeping records for years and have found a pattern then I can get on top of it. I've also had 4 surgeries that have each helped for a number of years before things return. I don't take any pills except anti inflammatory medicines as nothing I've tried has suited me/ worked over the years.

Sending you lots of positivity. Hope you find some answers and find things that work for you.

[singingelephant in reply to Gardenist]

Thank you so much for sharing your experience. I have been researching it all so that I know what I am pushing for. But it’s so difficult. Especially when everywhere i seem to have looked talks about going on some kind of hormone treatment which I don’t want. The migraines are just not worth it. I will have a look into the diets though!

I also am asleep by 9pm and when working up at 5.30am. I’m just always tired haha. I’m a teacher so I am currently enjoying being able to sleep more during the summer holidays. Still tired, always tired haha.

Thank you again for you kind words and experience x