My first post ....looking for general advice?

[meandmyfufu]

Hi all,

First I'd like to say thank you to all those who use this board - I've read countless blogs and the advice you guys give has been of great help to me. So I thought I'd write about my own situation to see if you could reply with advice, your views and if anyone is in a similar boat (I know it's selfish, but a sometimes I feel a bit better knowing I'm not the only one).

So here goes....

I'm 23 and waiting for endo removal at the moment.

My pain started when I was about 12 and was put on just about every contraceptive imaginable. None of them helped with the pain and finally, last year I was referred to PRUH in Kent with possible endometriosis. I had a diagnostic lap last June and it was confirmed. At my follow up appointment, the consultant explained it was quite extensive (stage 4). Endometriosis in the pouch of douglas, with my bowel sticking to my uterus. Apparently there was even a calcified amount of endometriosis which when tapped could be heard outside my body :S. He put me on 4 months Zoladex and booked my surgery for November. Due to miscommunication between between the gynae and bowel depts, my surgery was cancelled twice. After complaining officially, my consultant decided it was best for him to refer me to UCHL, rather than slipping through the net. I attended UCLH in April for an internal ultrasound and I wad told the endometriosis was more severe than previously thought. As well as having PCO and adenomyosis, the endo has stuck the bowel extensively meaning I will probably need an ileostomy. Both ovaries are also stuck to the uterus, meaning it all sort of moves as one big ball of mess. They've said I'll need a further set of Zoladex injections and that I will be operated on by end Sept / beginning Oct.

In the meantime, the only thing I have to help with pain is prescripted co-codamol (which in truth just makes me dizzy and pass out, doesn't take the pain away) and I am constantly tired and on the hormonal edge of doom. All of this is making my work and relationship so difficult to manage and I've completely lost control, I don't even know where to begin to get it back on track.

I work full time for a construction company, but am lucky enough to have an office based job. I've explained to my manager how endo affects me and even though I'm able to do 95% of my work at home, I'm not allowed. This stresses me out even more, because I have to drive to get to work, but I can't drive on the painkillers so I have two options - either be in constant pain at work or disobey managers, stay at home and feel a little bit more comfortable.

On top of that, my partner is as understanding as he can be, however he gets very frustrated. He knows how little energy I have, but frets a lot about my well-being and gets angry about waiting times and the fact that there's nothing else doctors can do until surgery. Our sex life is non-existent (sorry if that's TMI) I have a low sex drive which I've had since I tried implanon and add to that the pain that both intercourse and even orgasm now cause me, I feel so guilty about it.

There is also the high chance of infertility, which any doctor I've spoken to seems to dodge. l don't know how I'd even go about finding out if I'm fertile or not and as someone who wants nothing more than to be a mum, it constantly worries me.

I'm sorry if this sounds like a massive rant, but I just wondered if anyone could shed any light on how to cope at work, maybe how to explain it better to my employers, what others do try and combat fatigue and how to get around being intimate or any other advice anyone could offer.

Any insight would be very much appreciated

xxx

[Cloudyrain]

Hey honey, welcome to the boards.

I'm sorry to hear what you have been going through, but am pleased to see that there is a plan of attack from the hospital.

With regards to work I would recommend sitting them down and going through it all in detail - don't be squeamish or ashamed or embarrassed. Order Endo for Dummies off amazon and take a few phrases out of there too. My husband read it and, although he was always amazing, said it made his heart break for me. If you feel comfortable give it them to read; Living Well With Endo for a less offensive title

I know fertility is a concern and no-one can give you a guaranteed answer on that. In reality, a large portion of infertility is attributed to men, or unexplained. What I'm getting at, as hard as it is (we have been trying for many years and are awaiting ivf) you kind of have to accept you may struggle, but not always, and it's not always due to endo. I don't really think I'm explaining myself well - sorry!

For pain management don't discount ibuprofen or paracetomal. Even better to substitute ibuprofen with mefanamic acid. Tranexamic acid helps with bleeding and some people find low dose norerthisterone or provera help a bit. I avoid co-codomal too, but find plain codeine easier to tolerate. I try and cycle my tablets throughout the day (e.g. If I need to take codeine in the day I take it once I get to work, and take the ibuprofen/mefanamic acid about an hour before I drive.

I used to work in construction too and its not exactly the most forward thinking industries! However, I used to go in every morning to pick up mail and set everyone up for the day, and then take the rest of my work home. I would then often pop in later in the day. I was fortunate that i lived 5 minutes from the main office and when I was well worked 70 hours plus most weeks, but fewer hours when I was having a bad time. Unfortunately now I work an hour away from home my employer does let me flex, but when I'm ill I just don't go in and I'm seriously considering reducing my hours, even just to 35 so I can use lieu hours rather than be off sick (which doesn't look good for the company or for me).

Sorry if that is really wordy and sounds very self-focussed, just can't seem to explain myself very well today!

I hope things get a bit better for you and hope I've helped - even if it just sends you to sleep x

[meandmyfufu in reply to Cloudyrain]

Hey Cloudyrain,

I took your advice and bought the Endo for Dummies book and have started reading it - its quite an interesting read! Will have to let the other half read it too.

I've tried mefanaic acid and tranexamic acid but neither of them work, paracetamol and ibuprofen only seem to work when I'm mildy achey. I have started using evening primrose oil and starflower oil as well to see if they make any difference. Unfortunately my pain is only getting worse at the moment so I'm now on Tramadol for the pain, but once I start Zoladex again in July I shouldn't need that anymore as the pain subsides a fair amount.

Construction is quite a male orientated sector, which I suppose makes it a little bit harder, but even though I'm not allowed to work from home, my managers and colleagues (majoritively male) have been very understanding and always check up on me to see how I'm doing and if I need any help with anything. That is quite a blessing for me, because my work is the main thing which makes life seem a bit more normal and makes me feel like I still have some independance.

I've said this recently on another post, but thank you for taking the time to reply - I've suffered with depression since I was 16 and lost my friends in the process, so people replying to me on here makes me feel an awful lot better and it's humbling to know that so many women who are going through the same thing are willing to take time out of their day to try and support others. Genuinely brings a tear to my eye :')

Hugs xx

[classiebird]

Hey Im in same boat but I stand all day and being in retail cant bring my work home. Have you tried amitriptyline? I find it great and can now stand for 9 hours! Also as cloudy rain said take the drowsy meds when you get to work. The drowsy effect wears off eventually anyway I can now drive on co-dydramol! Its the thirst that drives me insane!