Not been a good week :-(

[dawntildusk]

Its not been a good week 😢

Results of mri show 3 endometriomas, adenomyosis, and pelvic congestion syndrome. cant believe after everything that has happened over the last year that this is where i am. im part way through a 3 month prostap injection and suffering some side effects. feel so low at the moment. trying hard to put on a brave face on for my partner, kids, family and work but its all getting too much. feel so emotional about it all. was bad enough with endo never mind the rest. sorry all just need to sound off to people that really understand x

[Sam341]

Awww bless you. My heart really goes out to you.

I have just read an article about an endo and ando specialist in the U.S. who always sends his patients to a psychologist because of the emotional effect this diagnosis has on a woman. He said that it is exactly the say as any life changing illness and the patient has to grieve to be able too move on and be strong.

I am so angry about my pain right now and thought it was because I was just a Weak person but I can actually see I am just going through the stages of being able to accept that this is my life now and that I feel better knowing that.

Being emotional is soo normal. And maybe print something out to explain to everyone what you have actually being diagnosed with including your employer, family, friends. To allow them to see the extent of what you are going through right now. You may have to be brave for your kids or people you don't know but not the adults who care about you. They need to understand so that you can get the support you need from them.

Sorry for the long post.

Good luck love!!! You are already a very brave strong person. so be as emtional as you need to be and it will pass.

[dawntildusk in reply to Sam341]

thanks for your kind reply sam.

i agree that there is no emotional support for people with these sorts of diagnosis. although in most cases they dont end up being terminal they can still be life changing.

i used to be such a strong person but the last year has slowly eaten away at that. i just feel like a wreck. not sure if some of it is the hormonal changes going on or just the stress of it all.

got to get my head around it all.

the support of everyone on here has been invaluable. dont know where i would be without it.

thanks again x

[applebird]

Hi there,

I've had the same diagnosis, except for pelvic congestion syndrome, and have been on prostap so know what you're going through. I'm currently studying rather than working as it's more flexible/more support and I hope that I'll have better prospects for part time work when I'm done. I've been referred to a medical psychologist who hopefully will help me manage better with the impact of chronic illness. This might be something that would help you so ask your gp.

Remember to take time for you, let your partner and kids be strong for you for a change. Also the prostap can make you feel down so bear that in mind. I know it's tough but at least you have a diagnosis and they can start to treat you.

Feel better soon xx

[dawntildusk in reply to applebird]

hi applebird

that might be something i will have to look into. anything is worth a try if it could help.

part of me is pleased to finally have some answers after all the messing about ive had to deal with. just wish there was a simple solution to manage it though.

how has yours been treated so far?

[applebird in reply to dawntildusk]

I know, I really wish there was a simple solution too. It has taken me a long time to come to terms with my life plans being altered due to something I literally cannot control. It's okay to be angry about it and work through your emotions.

I was put on pill/painkillers from about 13, diagnostic laparoscopy at 25, another lap the same yr. Then came back by 27 so 6 months prostap and another 2 laps (Inc. Partial bowel resection) followed by more prostap and pill back to back. Grew back again and adeno confirmed by 29 so now scheduled for laparotomy and excision of adenomyoma. Would have been given hysterectomy at 27 but no kids so they won't sign off on it. Currently ttc and largely trying to cope without painkillers. The thing I'm finding hardest is really the fatigue. Started acupuncture so hoping that will help.

Xx

[dawntildusk in reply to applebird]

oh goodness. u have had a lot to contend with yourself. hope u manage to conceive without too much trouble. ive read on here that the best time is usually a few weeks after surgery. even though its prob the last thing on your mind then!! fingers crossed for you.

[applebird in reply to dawntildusk]

Yep, my last surgery was 18 months ago, but only off the pill and having periods again since May. Having the hormones surpressed by pill/prostap really was a good option for me so I hope it helps to manage things for you, I'd give the prostap the full three months to kick in. I was on the one month depot and it took about 2-3 months until my body settled with it. You probs know this but just in case - symptoms can be worse at first as it works by overstimulating the pituitary gland until it becomes desensitised thus producing less FSH & LH and subsequently less oestrogen = less endo. So honestly if you're only half way through your first 3m depot that's more than likely why you're feeling rubbish (never mind the diagnosis shock). Give it time. Endo resolved is another website I found that's helped me with diet and what not, lots of good info. x

[dawntildusk in reply to applebird]

will have a look on there thanks. i did have a look at a couple of facebook groups but they werent very good really. hopefully things will settle down soon x