Inspiration Needed..

[EEshborn]

Hi - I'm a long term sufferer of Endro and never been directly told if I'm Stage 4 but I'm presuming I am. I'm booked in for Lap observation leading to Full Hysterectomy all in the one surgery at Preston Hospital. I'm on Prostap injection for 9mths now (due to referral disaster) I'm in pain, headaches that last days recently, bloated, depressed, can't concentrate, hide from my friends, heart palpitations, fatigued and constantly need the loo!!

The pain is getting worse even though the Prostap should be taking it away?? Any ideas please?

I eat little as know the result is pain prior to needing the loo.

I do eat healthy, raw milk, coconut/oat milk, oats and organic yoghurt's are just a few of the things I eat.

I have been drinking too much caffeine but that's because I'm tired however I'm drinking more Pukka herbal tea now..

I have Magnesium, Agnes Castus and Milk Thistle as part of my daily habit to stop my hips/abdomen hurting as much!

Have any of you got any other ideas for me to start prior to the op that will also help me after the hysterectomy?

My womb is said to be fixed and immobile. I'm thinking it's stuck to bladder/bowel and now every time I bend (part of my work...to get to the milk from the cows) I get a sharp stabbing from centre to either side of my abdomen .

I'm not due to have my surgery until March 2016.

I work as a milk recorder on various farms (dropped from 5 days to 3 days), I also work on a organic farm 3 days and help on my dad's farm.

I have just literally sent an email to my area manager resigning my position as milk recorder. I know she will be upset but I just haven't got the energy. She has supported me to a point but for some reason she doesn't understand the way I feel? I am very worried about money as I'm self employed and have no partner (no energy for any of that either...)

My other work at the organic farm are supportive at present saying I can look after the accounts from home. I'm worried about how they will be after my op as I've only worked for them 6mth and they are a relatively new growing business, so they need staff that are fit and healthy. The other staff are supportive and will help cover my hours for now.

I'm worried about the surgery as been told to expect the surgery to be difficult due to the liaisons sticking to various parts. So there I am hoping for the Lap Hysterectomy and no doubt will find I'm cut from here to there...

Has anyone got any wise words for me?

xx

[Tboag]

Hi, sounds like you are going through it.

I had a hysterectomy in July, for Adenomyosis, and gave endo, unfortunately I don't think my endo was dealt with properly, I wasn't seeing an endo specialist on the BSGE list, just a gyne surgeon,

My recovery was pretty straight forward, but so was my surgery,

Are you being seen in a specialist BSGE centre??

I don't really have much to say, just take it easy after your op. Listen to your body, if you need more tine to recover, then you must take it, if you rush back to work, you could find yourself in a worse position, get some extra pillows, lots of books and box sets, and some peppermint tea, and peppermint tablets, for the air in your body,

I wish you luck, and please check that your surgery is with a specialist in an endo centre, so they excise all your endo, other wise your endo could still play up and course you symtoms even after a full hysterectomy,

If you gave any questions please ask,

[EEshborn in reply to Tboag]

Hi thank you for the reply. Yes Preston is on the list thankfully! I contacted Emma Fleet originally at Preston& she let me know I should get a referral straight away.

Recently my mum has been diagnosed terminal cancer & the Dr overseeing things at our local surgery is sending a letter to Preston in hope of moving my surgery up as I need to look after mum & the prostap injection is no longer help with my endro pain.

I think I will need continued support from all you wonderful lasses! Xx

[Endendo]

Take care of yourself and do not rush your recovery - I did and it then took longer.

Call on friends and family to help you through this difficult time and possibly the CAB to see if you can claim any sickness benefits or similar whilst you can't work?

Both my husband and I were made redundant I month before my surgery but somehow we got through.

Warm wishes to you for a speedy recovery x

[Hidden]

Sorry to hear you are going through such a rubbish time. I can only say that I really needed my friends and family when i was going through a tough time. It isn't always easy to ask for help but i am glad I did it. I also telephoned the endo UK helpline and they were great. I have also accessed counselling to help. I am usually a fairly strong person but it is hard to cope with. I have a part time job and a 5 year old.

I was diagnosed with stage 4 and have lots of adhesions. I am awaiting a consultation with an endo specialist. i agree check that your centre is an endo specialist site.

Have they done an MRI etc to find out what is involved prior to the surgery?. My surgeon works closely with the bowel and bladder surgeons if they are involved in the endo.

Take care xx

[Hidden]

Big hugs your having a really bad time but putting your health first is a positive thing. It's hard to give up a job you enjoy but if you don't feel well enough to do it at the moment it's important to get through to your surgery without exhausting yourself.

You asked for a little indperation so thought my experience may help. I had a bad case of stage 4 endo bowel, bladder, kidney tubes were all fused to my uterus. Making the decision to have a hysterectomy at 30 was a hard one but I had tried surgeries to clear out the endometriosis before and it came back worse than before.

I had extensive surgery was opened up for my hysterectomy the operation was tricky and long but with the help from a bowel surgeon on the day. I had 2 bowel erections and a stent implanted into my bladder as one of my kidney tubes was damaged.

I also withdrew before the op from friends as felt I couldn't tell people how I was feeling. I also had to give up a job I loved, as I couldn't get fit enough between surgeries to do the job.

I am now 15 years post op and basically the surgery has given me back a quality of life. It took me several months to get over it and I did not have any hrt for 12 months after. It's left me with parts of my bowel with nerve damage from the endo and surgeries but I manage this bit of pain well and watch my diet to help it. I do have some adhesions but it is a small fraction of the daily struggle in pain before the op. I now work and can hold down a job again, can socialise go out and do things I couldn't before the op. I found it a little tricky finding a hrt which suited but in the end I have found one and feel good again. I feel alive again. I visit the chat rooms as my daughter now has the battle with this disease as I like to see what has changed but thought hearing my story of getting my life back after my hysterectomy would help you.

Feel free to message me if you what to chat or have any worries you want to talk about as one of the things I found hardest was having no one who had been there to chat to.

Good luck with your op. While waiting I tried accumpuncture on the NHS for pain, massage I paid for eased it a little too. I ate healthy and took a cocktail of pain meds hope this helps Tina x

[EEshborn in reply to Hidden]

Hiya..you sound to have had very similar problems & feelings to me. Your message brought tears to my eyes as I read. I'm so glad you have come out the other side of things.

Unfortunately my mum has just been diagnosed terminal cancer & I only have a few months to a year with my best friend.

Our local Dr is trying to move up my op as I'm in pain despite the prostap & obviously because I need to be fit to look after my mum.

I've decided to leave my work and be mum's carer. I'm aware I can get carers allowance but no idea what else I can get as I'm self employed presently but on leaving working I can't claim for 8 weeks I think?

I'm depressed yet trying to act normal for my mum which means I feel I can't cry on my own? I may never stop.

I have cut my friends out & feel awful for it but can't cope for some reason.

I get confused regularly these days & feel rather stupid as words get mixed up when I know inside what I'm saying? I have always prior to the endro getting worse quite clever....where has that person gone.

I look forward to hearing from you as I think I do need this site to understand why my body has given up on me.

Em xx

[Hidden in reply to EEshborn]

Em, it sounds like you made some good decisions my lovely. Careers can always be picked up and it's important you get your pain improved. Sorry to hear about your mum but this way you can have as much time together as possible.

Have a chat with your mums care nurse or citizens advice get everything your entitled to they will be able to help.

I would also urge you to contact your GP and ask for some council lying your going through a lot and it will help. I had 6 weeks when things were tough and it really did help not one to share my feelings but it really did help and something that may help make you feel less alone x take care T xx