Endrometrosis 22 living in pain

[Jesshod]

Hi everyone

New to this forum. I am 22 years old and was diagnosed 9months ago with band 5 endometriosis. Since then Iv had 6 months worth of prostap injections which stop my period and slight symptoms. I have now just begun my period after that length of time and my symptoms are severe. I have been referred to Southampton specialist department as the endo is on my liver, bowel and now they think it's reached my diaphragm. I have pain where I am curled over and cannot even walk, I also have severe pain on my shoulder? Does anyone else experience this? It's great something has been diagnosed and I am seeing specialist but till on a waiting list for about 5 months. Till then do I just sit and live with the pain? It gets me down and makes me feel so uncomfortable with bloating and am having to take time off work due to really effecting my day to day life which worries me I will be left with no job in a minute. I guess I just want to know I'm not alone at my age and also that this waiting list is for real?! How can I ease the pain in the mean time?

Your comments would mean the world to me. Thank you

[Hidden]

Hi Jesshod!

I'm 23 and have endo and adhesions which has stuck my ovary, Fallopian tube and bowel together.

Unfortunately in terms of timescales if you are waiting on NHS treatment 5/6 months (if not longer) is the norm.

Sorry to hear that you're having a really rubbish time and I can relate in terms of pain/unable to leave my bed etc. Until you meet the specialist have you thought of dietary changes? I know this sounds ridiculous but I've reduced food intake that makes me bloat such as wheat based food/fast food/coffee and it took some pain off as the bloating caused me to be in agony.

If you cannot move can't you speak to the referrer and ask for this process to be prioritised? I appreciate that no-one seems to listen when it comes to endo but maybe they could help.

In terms of emotional support, this group is brilliant when you just feel like giving up because everyone can understand just how horrendous endo can be.

Keep your head up and I hope you get the help you deserve soon! X

[Jesshod in reply to Hidden]

I haven't tried the diet thing. When signing up to this I did see that people were saying this. What's best to eat? It's so good that I'm not the only one at my age to go through this. My endo is also blocking my Fallopian tubes.

Are you having trouble working too? Emotionally it's really hard getting people to understand and the bloating is making me feel rubbish as Iv never experienced bloating like this before. I live with a heat pad on me 24/7 I swear. Yeh I see the specialist in June so will be saying how severe my symptoms are. Thank you x

[Hidden in reply to Jesshod]

There's nothing set in stone in terms of diet. For me it's cutting out wheat/saturated fats and cutting down on caffeine. Some people on here have no dairy or red meat but they don't seem to affect me as badly. Maybe keep a food diary and then you can see what bloats you more and work from there.

I cried going through this so young but unfortunately we aren't the only ones! I have but I've barely had any time off and just tried to keep going as best as I can. Heat pads/hot water bottles are my saviour!

It's hard for people to understand because they can't see it. I've been keeled over in pain and crying but it's hard for people to understand because it isn't right in front of them. Use the group when you feel low and hopefully people can get you through. Good luck! X

[Becca16 in reply to Hidden]

Hi Jesshod and Lorneey16 randomly came across this old thread looking for other people with shoulder tip pain and endo. I am also 24, and went through medically induced menopause with the injections as well at 23.. that sucked and confused a lot of people! Nice to see there are others out there 👋🏻 Hi!

Your comments were exactly how I am feeling put into words, because we don’t have a neon sign or broken arm and we plaster a smile on to get through the day people forget we are in agony and counting down the minutes until we can get to a hot water bottle again and just survive through the work day.

I have had horrible right shoulder pain for 5 years now that flares up and not had it linked to endometriosis. But since yesterday I have had the development of left shoulder tip pain that has started radiating down my arm to my finger that just won’t go away and has made my arm feel really weak, anyone had that? Also just wondering Jesshod did you get diagnosed with endo on your diaphragm in the end? Did your shoulder pain ever get resolved?

If you guys do see this I hope you are both doing better 7 months on

Becca x