Acceptance, how do you deal with accepting Endometriosis will rule your life?

[Adele-84]

I haven't been on here for a while, been very much trying to live life not defined by my Endo. I'm stage 3, lap Nov 2015.

I've had a very significant week this week, I had a conversation with my boss about reducing my hours due to 4 days a week as I'm no longer coping with the pain and working full time.

Its like I've finally had to accept this horrible disease has taken my career. Up to the age of 30 my career was my everything, at 31 I had my lap and at 32 I had suspected Thyroid cancer and had half my thyroid removed along with the tumour(luckily it was benign) life hasn't been the same again. I'm no longer capable of achieving my dreams. My fatigue and pain rules my life, I'm so tired and broken. But I fake being well, people see me doing lots of things and think I'm living a great life. They don't see the other side of things, I am a good actress when it comes to my health.

I now have 2 suspicious lesions on my liver, so at the start of yet another health battle.

I wanted to ask how others on here deal with the acceptance? Have you found ways to cope with accepting this is your lot? accepting that my endo and other health issues are holding me back is so hard.

My GP said to me a couple of weeks ago, I'm fighting it....I need to accept with my combination of conditions I'm not likely to feel well again. That really sucks 😕

[Apollo_blue]

Hey I have only recently diagnosed with Endo 1/10/18. So not sure how to deal with accepting Endo at all. I suppose I have learnt from reading other people’s stories is don’t suffer in silence, talking to other people that understand this horrible disease helps. Some days you may feel alone but you are an Endo warrior . I hope you will find the answers you seek. I wish I could advise you xx

[kitty270]

I am really sorry to hear all of the difficult challenging problems you are dealing with. In fact challenging is the wrong word! That gives a sense of light at the end of the tunnel but in some cases there isn't and it's hard, unbelievable hard to deal with! I haven't had the cancer scares that you have had but since I turned thirty my mum had breast cancer and because of the risk to me and my sister I was forced to go on the progesterone pill. Having been on the combined pill for 20 years, From that point my pain went from bad period pain to pain everyday. I finally had endometriosis diagnosis 2 years later, having had no investigations despite painful debilitating periods all my life. It was a significant shock. In the 7 years since diagnosis, I have been lucky to have a child but my career is definitely down the tubes. I went through college, my degree and almost completed professional exams (just 2 remain) to become an accountant and now it's gone, and my favourite hobby (rock climbing) is not even on the cards. As the Endo causes severe pain in my hips and weakness in my legs, i'm lucky if I can walk on a daily basis. For some events I have had to ignore my feelings and hire a wheelchair just to attend. Believing that it does not matter how I get there but I should try to get there. What keeps me going, is my family and hoping that the next operation will be the answer. I'm going to have my 4th surgery in the next few months and I hope it will give me a break. I would even accept just 6 months of reduced pain but there is no guarantee. I just take each day as it comes and I am not willing to totally give up until I'm told there is nothing more they can do. In the mean time, I am going to get as much out of life as I can. I am hoping to complete my family and then have everything removed along with any remaining Endo and hope this will be my answer. If not, then I will have to find another career and different ways of living a new life. A different life than I had planned but still my life, and I'm going to make the most if it. My advice is that it's hard to accept but accepting does not mean giving up. There are times you miss your old life and you feel low but then something will lift you back up. I find watching old feel good movies or getting out my Cross stitch (a new hobby) lifts me, or listening to my favourite tunes. You've got to look for the positives and know we are all here to listen whenever you need to talk. Try to attend and get involved in as much as you can when you are able. I hated cancelling on people so I stopped trying to go to events/ social things but that just made me sad. Instead I found a new set of friends whom understand and are willing to wait until I have that one well-day a month to go out. I wish you better days and the courage to not let it win!! Find new ways of being yourself again. Stay positive, we are here when you need us xx

[Aurorasparkle]

Hi

I can totally relate. I had a job I loved that I did for 15yrs but had to give up as my body could not longer cope. This was over a year ago. I have had two major ops one emergency for a 13cm endometromia which was wasn't picked up despite constant trips to GPs and another one under an a specialist centre. I am now in permenant chronic pain as the endo had grown on the nerves and it is too risky to operate. My bowel is stuck to my womb for the third time and I feel broken by this disease. I was diagnosed at 34 and am now 39. I have suffered severe chronic pain in my pelvis for many years but got no help. I was diagnosed with fibromyalgia before then and have Lipodema and lymphatic problems. My facet and si joints have been affected and now have 6 injections under X Ray control every four months.

I spend most of my time in bed due to the pain. I have had my bed adapted

And other adjustments. I have just been given crutches and a tri walker to help me get around outside. I have been told that I must accept this situation and working on trying to enjoy life but it is very very hard.

Lots of hugs to you xxxx

[kitty270 in reply to Aurorasparkle]

Aurorasparkle, words fail me right now! I am so sorry for the pain you suffer. My story pails in comparison and I admire your strength to keep going. It's hard I know and I suppose, probably like yourself, I don't know how we keep going.... but we do. I have Si pain and hip and leg pain yet to be fully understood but something a chiropractor is helping to relieve and keep me mobile. Although at age 37 I feel like my grandmother at age 86! I hope the endo has not reached my nerves but I have a feeling that maybe the case, a thought I am hiding from my husband as he truly believes menopause will be our salvation. I hope he's right but I am not so sure. I suppose it's why I want another child. Not only as a sibling for my son but also extra joy that I can appreciate if this is it for the rest of my life. I do not fully feel your level of pain but I understand and appreciate the hardship and sacrifice we have made compared to what life we had mapped out. Lots of hugs and hope for both of us to find ourselves again in the life we now lead. Take care xx

[Aurorasparkle]

Hi Kitty,

Thankyou for the lovely reply.

Don't discount your pain. We are all suffering from this endo beast. I just wish medicine could do more for us.

I truly hope that you get some relief and can enjoy life with your family

Xxxxx

[Gwen172]

Just wanted To say keep going both. It’s so debilitating I know it so well. I have lived with chronic low back pain and sciatica for over 20 years. It started after having total hysterectomy. Thought my journey with endo was done but sadly not. Have had enough and seen a consultant privately. Just had mri scan. I am in two minds whether or not to pursue this beast as if I have lap and excision what’s not to stop it returning in a few months. I’m 56 now and the thought of loads of surgery terrifies me. My gps are useless and I get no support from then. Think it is on the sacral joints as I get shooting nerve pains. Thank god for this group. I have learnt so much. My drs are ignorant to this disease. They think once you have hysterectomy that’s the answer. Take care both. X

[Adele-84]

Thank you so much for all the lovely messages, it's a real tough one for us all. Its lovely that there is so much support on here and it's great to know that I am not along. It makes me so sad that this awful condition takes our lives as we know them and turns them upside down. Have to keep going and focus on the positives xx

[Lottie80]

It doest have to rule your life. It is not easy at all but it is about changing your mindset. That will def help..is counselling an option? Volunteering to help others? When life gives you lemons, you need to make lemonade!! Good luck x