Not sure what to expect

[K5315]

Hi, I’m new here and I just need some advice. So I’m 25 and struggled since being 14 and my first period and finally just had my doctor refer me to gynae with what she is ‘certain’ is endometriosis. I have had 7 miscarriages and 1 ectopic (I passed naturally - no need of surgery!) I am so scared of what’s to come, the pain is so bad over this past 6 months I’m unable to do the school run some days, it’s crippling. I can’t even walk. I am more mentally drained than physically ? Is this normal? The effect it’s having on my day to day life is ruining my life. I ring the doctor over the pain which is now a daily battle and I get told ‘wait for gynae to contact you’ how long do they expect you to live with this? Is there anything at all I can do to speed up the process of being seen to by gynae? Sorry this is all back to front and probably a bit rambling, just glad to be able to ask questions where someone else gets it, thanks in advance x

[Heartof3]

Aww I am so sorry you're going through this 😞 it's so not fair.I'm the same as you where it's everyday & ruling my life. I can't even walk to my local shop without causing a flare. I feel like a shaddow of myself & grieve my once active life! It is so so shit isn't it 😞

I rang my doctor last week & broke down to them, I insisted they help me , to which he agreed to write to gynea to try & hurry the lap operation up. I think sometimes we have to be firm by telling them what WE need as it's US living with this awful pain.

I feel your pain, I hear you 💖 Always here if you need a chat xx

[K5315 in reply to Heartof3]

Thank you for replying. I know it sounds selfish but it makes me feel better that I’m not alone with it being a daily struggle. I have been at my doctors all my life so my GP knows me very well and she has diagnosed me everything under the sun until finally after my ectopic I went back and had her check over the scan results of the cyst I had and compare with all other scans (5) over the past 18 months and that’s when she said she’s certain it’s endometriosis. The pain I could probably deal with during my period like it used to be, but I’m finding it so so hard to mentally cope with it. Every day I feel like I’m battling my own body and it’s so draining cos then I end up battling mentally too. I just don’t know how much more persistent I can be, my doctor literally replied this “Hi,The pain you are having is part of Endometriosis, I have actioned a referral to Gynae for this

you are also having a scan soon” like what am I meant to do with that? My daughter is suffering because I can’t be the best parent to her when I am incapable of even moving it’s awful. Thank you so much for your message, I hope gynae listen and rush you through now your doctor has wrote to them. The same to you if you need to talk, message me! Thanks again xxx

[Heartof3 in reply to K5315]

I know exactly what u mean.It's awful being controlled by this silent controlling disease that not many understand. It's sadly a lonely battle. Thank god for this group tho 💖

Mine was the same, just before my period then ovulation & now all the time 😞

I no , it's not easy being in mummy mode & battling this pain aswel.

It's not fair how we're told to take our meds & just wait... like these pains isn't enough guess work, let alone guessing when our next appointment might be. Draining isn't it 😔

Definitely keep on at your doctors & take time out for yourself 💖

Eitherway the count down has begun so there is hope. Just do whats right for U in the meantime.

We got this 💕

[Shiante]

Hey, so sorry to hear you’re having to deal with this!

Definitely can relate to the mental strain taking it out of you, it can be more taxing than the physical symptoms, especially when you just want to know a way forward.

I’d say just go easy on yourself and take time out when you need to, take care of yourself and don’t ever feel guilty about that!

My son was born some years ago and I’ve been on the merina coil since then which has helped reduce the frequency of flare ups. I realise that’s probably not an option for you right now as you’re talking about having children but hopefully can help you in the future.

Just wanted to say I hope you get help soon, keep on at the doctors, I’ve found sometimes you have to be quite insistent.

[K5315 in reply to Shiante]

It’s the unknown, of how long this is going to take. And the unknown effect it is having on my body internally that I can not see but certainly feel that makes me struggle.. there’s no light at the end of the tunnel. I have to take numerous days out of work or change my shifts .. I just know it’s not long until I lose my job too. My doctor did mention the merina and (maybe too much info, sorry haha) but she said she wouldn’t even attempt it due to the pain and discomfort even a swab causes me.

I have emailed my doctors surgery and I’m just going to keep on at them as it seems the only way out of this is to keep mivering.

Thank you for your message and your kind words xx

[Jane884 in reply to K5315]

Hi, sorry to hear your suffering so much. Your GP should have told you that you can go to a hospital and have the mirena fitted under a local anesthetic of you wish x

[E-ZEE]

Hi Sorry to hear , if you are in UK contact to PALAS for your appointment,secondly if your gyne diagnose endo ask them to reffer you to the endo consultant. There are few options medication or surgery it helps to reduce symptoms ,and help you to bring back to life.If you are going for surgery ,just go for excession surgery not ablation.

[Warrior101]

So sorry to hear about your struggle! I had my second surgery for endo last summer. My advice is, while you are waiting for scans and surgery, to look into nutrition and lifestyle changes that can help. There are a few really good health coaches specialising in endometriosis in the UK that have helped me a lot to understand the condition we are living with and how to support our bodies to cope. It is crazy (and very promising!) how much difference a good diet can make, especially when you have to deal with NHS waiting lists that might take months. Not sure if it is within community guidelines to recommend practitioners here, but I worked with the lady that runs This Endo Life and it helped me loads! Wishing you a speedy diagnosis and recovery and remember you are not alone in this - this community is really strong and awareness is growing! Sending you love 💗

[Angellouise]

I’m sorry you are going through this. Can your GP not give you pain killers while you are waiting to get into the gynaecologist? My daughter is 20 and is going through the same thing she takes tramodol. I hope you get help soon