An update on Frank and myself

[Reen_Bean]

So it's been a while since I posted anything here, in fact it has been 28 days. I haven't written because I haven't been able to find the words. It's not often I find myself unable to find any words, I'm sure Chris will stand testament to this because I even talk in my sleep. But lately I am devoid of the vocabulary needed to deconstruct my thoughts and share them. It's not that I haven't had anything to write about, my mind has been racing, bouncing from one endo issue to another, so today I have decided to sit and try to scramble together enough words to coherently share the recent leg of my endo journey....

Frank (my right ovary) has gone into full blown meltdown, Frank is angry at everything and is insistent on causing absolute chaos in my pelvic cavity. Pain has once again become a daily normality and painkillers are fastly becoming the most prominent section of my daily diet. Some days are better than others but no day has been completely pain free. I am managing my days at work (which as a 26 year old with a desk job really shouldn't be such a huge achievement), I take my hot water bottle with me now and fill it so often I'm sure, despite my attempts to hide it, my colleagues have worked out I am a freak with 24/7 period pain. On the plus side I have managed to adapt a wonderful 45 degree lean that brings comfort without attention (I'm calling it the Frank Lean). So I manage work fine but if I have weekend plans I need to be sure to rest the evenings before as soon as I come in from work and the same again the evenings after galavanting at the weekend. It's a little soul crushing to be honest, being young is something that everyone takes for granted and having those years stolen from you is hard to wrap your head around. 

Last weekend I indulged in attending the Belfast Craft Beer Festival and a charity event my aunt ran at home (which was overwhelmingly successful). I prepared for my personal social endurance test by having early nights with lots of rest, consuming my performance enhancing painkillers and clearing my schedule for the following days to allow for rest and recuperation. 

Needless to say Frank wasn't happy with my shenanigans and so threw my pelvic neighbourhood into disarray on Sunday afternoon while I was driving along the M1, so at the first available opportunity I swapped places with Chris and he drove the rest of the way.

I thoroughly enjoyed my weekend but Frank's tantrum brought my mood down to his level. I felt miserable, angry and pityful. In the safety of my room I broke down a bit and cried angrily to Chris that what was the point preserving fertility because I couldn't have a child like this. How would I possibly raise a child in the shape I'm in. Children don't do rest days or down time. I was so angry that there was no quick fix. I raged at how cruel the whole situation was, at the pain, the exhaustion and the unknown. In that moment I decided that I wasn't going to have children, well not biological anyway. My body had been through enough, my body hurt, my mind hurt and I needed it fixed. But in the next moment I looked at Chris, I looked at his perfect nose and little ears and my heart broke thinking that our child wouldn't have its father's nose or ears and I fell to pieces. Everything I loved about this wonderful man was worth every agonizing effort to replicate. 

And this has been how my thoughts have been bouncing about in my head. Back and forward. 

I wish there was a quick fix, I long for a solution with a timeline, I yearn for an answer to my problem but I know it doesn't exist and at the minute I am struggling with that. I am continuing the hormone treatment prescribed to me 6 weeks ago and I see my consultant again next month but for now that is the only certainty me and my endo have.

wee.facebook.com/theendodiary

[Doves76]

Oh hell. The is just so hard. I'm so glad you found words. I don't think there are words for this. We need a new Endo language. One day at a time. I'm 40. Diagnosed when I was 21. Whilst I have had lows like you describe right now, I have had good times too. Great and fun and loving and raucous and drunken and adventure filled days. And days that are heartfelt and wholly appreciated which can make for a rich life. I made it to Everest base camp, to a job of my dreams, to run my own company and love the kindest man on earth (I think) I share this in the hope it will give you encouragement. Great great lives can be lived taking one day at a time. 

[Reen_Bean in reply to Doves76]

Thank you so much for sharing your experience,bits very hard to see beyond my own sometimes, so I love hearing how other people make it work and are happy with endo.x

[Davina-Canning]

You are an incredible woman Hun, keep strong we are all behind you xx

[Reen_Bean in reply to Davina-Canning]

thank you for your encouraging words. X

[mierran]

I have 3 wonderful children through the help of 2 egg donors. I have infiltrative stage 4 endo.  I had to have my left ovary removed and my right is gubbed and doesn't respond during IVF. While it was not the path I had planned on taking, I wouldn't swap my kids for anything. 

I still have endo ( tho breastfeeding is amazing - least pain I've had in 15 years ) and you just get through the days as you can. Good days you do more, bad days you do less. My kids know there are things that I can't do that other Mums can. They don't know any differently - it is how it is. I still work 30 hours a week Mon Tues Thurs and some weekend days and we usually have snuggles days on the Wednesday as otherwise I am too tired. 

Just to let you know there are other ways to have a family. And you will cope fine, as you are now. 

Big hugs and it is hard. Just know you're not alone. 

[Reen_Bean in reply to mierran]

Thank you so much for your reply. It's very inspiring and encouraging to hear another experience. Thank you, I needed to know this.x

[Nicolahunny]

I was lucky enough to fall naturally and i have days that I can't do much with my son with the pain I'm in but enjoy snuggles on the sofa with my wee boy enjoying movies if me and my husband do have a day out with our son I always take pain relief with me and use heat pads ur such a brave woman with the struggle us poor woman have putting up with this awful diease hang in there big hugs to you xc

[Reen_Bean in reply to Nicolahunny]

Aw thank you. I'm glad to hear it doesn't impact family life as much as I imagine. It's hard when you're not actually in the situation to predict how it will be so I'm really glad to have some perspective. Thank you x

[Nicolahunny in reply to Reen_Bean]

yeah have good days and bad days with my pain but I'm always worse week leading up to my period and ovulation time are hardest

[Princess777]

Hiya

I read your thoughts and wanted to reply to you . I have suffered with endo for too many years but I did have a child 1 son who is now 19 and like you I was scared how I would cope .the joy he brought to my life and other family members and friends is indescribable ! Don't let this disease put you off , you will manage and you will be happy that you took the chance . Please don't let endo stop you . People come in different shapes and sizes and we all belong in this world . Your children will understand and support you and you will be surprise at the fact that you will find the energy to do things for them still and they will help you because that's what people do who love each other ! So follow your dreams hunny and take a chance xxx