Endometriosis UK
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What next?


I'm new to the forum so please excuse my ramblings!

I'm here on the forum because I genuinely do not know what to do next. I have endometriosis and it affects everything in my life. I have suffered from painful, heavy periods from the first time I started my periods when I was 13. Work, time with family and friends - everything is affected. I hate feeling so detached and tired. I often feel like I become a whole different person, like I'm watching someone else. It can feel a very lonely, horrible place to be at times.

I'm lucky that finally after many years of trying to tell my local GPs about what was happening to me I found a GP who listened and helped me finally take some steps forward - this was only after leaving the GPs surgery that I had been with from being a child because one GP , quite frankly, treated me like something she'd stepped in. My 'new'' GP and I agreed to 'start again' and within a few months I have had a laparoscopy and a course of Zoladex injections (6 months) and I'm now waiting to see the Consultant to follow up. What this will entail, I'm not sure although I'm hoping it won't be the end of the help and support. I'm incredibly grateful for the help I've had so far but I am completely terrified as to what I'm going to do next. The injections definitely helped with my symptoms but as I've finished the injections I'm back to where I started - in pain, constantly feeling like c**p (excuse the language!) and terrified of the impact it will have on my life...oh! and I have the added bonus of hormonal acne to contend with now! Brilliant!

If I'm honest I am worried that my options for further help may be limited - I'm 33 and quite a few times I've heard the 'having children may help with the symptoms' etc. I don't want children, I've never wanted children and I am hoping I won't have to say this again.

I may sound miserable and pessimistic but I am hopeful and willing to continue the fight to get my life back. Does anyone have any suggestions for other ways forward? Maybe something you have tried?

Thank you for listening x

2 Replies

Oddly I'm 33 as well and I feel like you might actually be me! :D

I had no end of symptoms until I had Prostap for six months, and it was like someone had given me my life for the first time ever. I fought for six more months and that course worked even better - but about four months after coming off, my life started falling apart again.

Thankfully I had a great GP, and we fought and fought until I was unexpectedly prescribed Prostap again last week (ten months after the end of the last treatment). Technically you are not supposed to have it for longer than six months, and they were extremely reluctant to give me the second course, but I've just had twelve more months sanctioned! It's on the proviso that I have bone density scans, and I must have told that clinic I don't want children at least 500 times, but the message clearly got through. On my own head be it if it causes any problems, but right now I don't care - I was so happy that I was in tears on the way home from the hospital.

Sadly, I was treated very badly by several doctors along the way and to be honest I'm dreading what will happen when I come back off - I feel like I'm speaking a foreign language when I go to appointments. It's been an unbelievable fight.

I genuinely can't get over how exactly like me your story is. I'm trying to remember if I wrote this post!! ;-)

1 like

Hi FN75,

Thank you so much for your reply, it's means a great deal to hear from someone in a similar situation to me as it can often feel like I'm the only one who really knows what it's like.

I'm not sure what will happen next but there is no way I am just going to walk away with nothing. I'm determined to make people understand...and now I feel a little braver knowing I'm not on my own!

Thanks again and take care!


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