Is there any hope?

Hi ladies I am relatively new to the endometriosis world and I am just wondering if any of the treatments are successful even if it is only for a couple of years? I started getting pain back last september and after several scans, trips to a&e, a laparoscopy for suspected grumbling appendix. I finally got a diagnosis in April following a second laparoscopy. My consultant put me on the pill which didn't work! I have just had my first of 6 zoladex injections and started taking livial. I am constantly tired and struggle to find the motivation and energy to do everyday activities. Please tell me I am not the only one? because I am getting on my own nerves and pretty sure that I must be getting on family and friends nerves as well

Hope this all makes sense!

7 Replies

  • Hi. Im new to endo as was only diagnosed mid aug. Im on zolly for 3months. Having 2nd injection next week. Im tired too all the time but im trying to stay positive. Am swimming which helps my bloated tummy and makes me feel like im doing something good. Good luck sweetie and u arent alone. Promise xx

  • I no how u feel. I have been signed of ark unfilled I have had my op. I am having a laparoscopic excision of endometriosis and a presacral neurectomy on 11 October. I haven't found anything that helps. I am on maximum dosage of tramadol. And amatrypilin. It a night mare

  • I was diagnosed with endo just over a year ago & feel like I have tried everything...I was on a prostab injection for 6 months and the livial made me so ill i ended up in hospital. But I then found a herbal HRT that worked really well. But to be honest the prostab just masked some of my symptoms and I didn't like being on it. You really arnt alone in all this, and I totally feel the same about getting on friends

    & family nerves, but we can't help what we have & just need to stay as positive as possible. I'm now waiting to have a diathermy op which will hopefully be a more long term treatment for this constant pain. It's so nice to know I'm not alone in this and i hope you find a more permanent 'treatment', im personally hoping the diathermy will help relieve pain for a good few years :) xx

  • I had the diathermy op and it worked for a couple of months and then the pain started again whilst I was on the pill hence now the zoladex injections. My consultant says he will re operate in 6 months if injections don't work and then put me back on injections straight away as he feels that being on the pill let it come back. Keep this in mind after op! Although To be honest I have struggled to get my head round the whole menopause issue as i am only 26 and wonder if it doesn't work at what point do u say enough is enough and stop letting doctors poke and prod u? So many questions all the time in my head? Like will it affect my fertility? Will I grow hair in places u really don't want it? Are my boobs gonna get bigger or shrink? (they are already massive and if they shring just bags of skin will be left!) etc etc. also whilst I am nattering away anyone know of some things I can do to help my immune system? as I seem to pick u every cold going. I am already taking multivitamins and exercising. Thanks for ur comments it is nice to know not the only one friends try to understand but don't really get it. Rachel x

  • Firstly, yes, there is some hope, ive had three ops now and to cut a long story short after my last op i had zoladex for just over two years (which helped greatly) and since I stopped those injections ive had 18 months relatively problem free, not without the odd scare but nothing which took me to A&E. Yes the treatment did make me tired (more so the first time though so it does affect people in different ways) unfortunately the best most of us can wish for is a few 'normal' years. Secondly, I understand how you feel when people ask me how I feel i usually say ' not good .... but im boring myself now' not good but sometimes you have to laugh or you cry!

  • Thank u this really helped today as I have been up all night being sick. Not sure is it is drugs a tummy bug or the pain feeling really rotten : (

  • Hi ya,

    You really aren't alone!...I was diagnosed with Endo in July. I had no pain, no symptoms, just out of the blue i had two months of periods that were very heavy and alot longer than normal. Everything has hit me since then, the dr confirmed after an internal scan that I had a cyst in my ovary and a polyp in my womb.

    To cut a long story short, my parents paid for me to go private, thinking this would be a "one off op" to remove the above. After waking up, the consultant told me that i have severe Endo, basically everywhere!!....My Uterus is stuck to my bowl, bladder, womb,...everything is stuck to everything!...Im on injections now to bring on a "temporary menopause" until my second op on 10 December. I have an appointment at the end of this month to have a sigmoidoscopy to see if the endo has gone through my bowl, if it has i will have to have a temporary colostomy bag and possibly temp catheter for 6 weeks after next op.

    I too feel like I am annoying my husband, friends, colleagues and family to death hearing about my worries and me moaning about being tired all the time. I'm just so drained, sometimes it feels more than tired, totally exhausted. I work full time, but since my last op I have really struggled to get through the day without a sleep. I come straight home and go to bed!...Sorry to moan, I was supposed to be writing this to let you know you are not alone..(I have even gotten on my own nerves now! LoL...

    I hope you are feeling better.

    Kelly x

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