A quick Intro

[will-EndtoEndforEndo]

Hi, I thought it would be best to give a quick introduction into who I am, and why I have joined this site, My name is William, and my Fiancee Amy suffers from Endometriosis quite severly, having been diagnosed now for 3 years, taking over 4 years for her to get diagnosed. Since then she has had two lap's, the first being full ablation of endometriosis, the second being excision of all Endometriosis cells, then to be told quite bluntly by the consultant.... there is nothing else that we can do - so for the foreseeable future you now need to control your med's and adjust your lifestyle?

We weren't happy with this as an answer as Amy is 26, and no-one should ever be told this as a final answer so we have pursued a second answer as she currently takes a concoction of 23 tablets a day, so surely there must be an answer?

Amy and I have been together for coming up to 11 years now, and the last few have been particularly tough, I find it bewildering that Endometriosis isn't known in the medical profession, and that you have to push and push and push to get any answers.

There is so much more that we need to do to raise awareness about Endo, and support needs to be offered to the partners of people suffering as-well, I can't remember a time (i've been to every single one of Amy's appointments with her) where the doctors have even considered the emotional affects it has on the family - Oh wait - there was that one time that the doctor was convinced it was an STD, despite us being together for 7 years at the time, forcing us both to go get a full sexual health screen.

As a result of this I am now aiming to raise sponsorship for Endometriosis UK, a charity that have helped so many women over the last few years including Amy, and equally to raise awareness about the condition.

I will also contribute on this site as much as I can, and will offer a 'partners' perspective if anyone would like to hear.

Please have a look at my Just giving page , share and sponsor if you can, lets raise awareness about this terrible illness together. justgiving.com/will-littlee...

And have a look at my 'End to End for Endo' videos on youtube - please post any questions or anything that you would like me to talk about in the questions and I will answer them in my upcoming videos.

Thanks

William

Edit - just adding a link for 'What is Endometriosis'

youtube.com/watch?v=d2x7s5K...(Not working as expected?)

[mablesky]

Your post was fantastic Thankyou it's so helpful to read relatives/ partners perspective on this hideous disease .

yes we know it's not life threatening but oh boy it can be massively life changing not just for the sufferer but also our families.

Thankyou so much for you efforts to raise awareness of this and I wish you both the very best

[Cam26]

Thank you for posting! nice to see things from a man's perspective as it must be awful to watch a partner going through things and feeling like you're not getting anywhere. I'm finally getting sorted myself after having a rubbish GP where I lived before, Thank God I moved areas.

It does turn lives upside down and I know my husband feels helpless sometimes. You're doing a great thing by raising awareness and sharing your experience. Your partner must feel very loved

Cheryl

[Hidden]

Hi

Amy is lucky to have you. The other post was about moving if you cannot get your GP to help or rubbish

hospital help. I just moved. I am unsure if eating an anti anti -inflammatory diet helps - to reduce Amys

pain. I just started eating bread and increased 3 kg swelling up like a Barbamama. Good luck.

[mindful579]

Thank you william, for the man's point of view on this terrible problem Endometriosis can have on a woman's partner. My previous partner tried to help me the best he could, god bless his soul, when i was in terrible pain also, so Thanks again. :-)) x

[Kayleigh1985]

Thank you so much for your post it really refreshing to get the point of view from a partner. I feel for my husband everyday having to help me out and do things for me but it's nice to know he's not alone. I shall show him this, thanks again xxx

[Hidden]

Hi william, how does the endo affect your wife on a day to day basis?

[will-EndtoEndforEndo in reply to Hidden]

Hi, Amy's pretty much always in some sort of discomfort, with breakthrough pain a few times a day that cause her to to cramp over, taking 35mg of MST twice a day to keep the pain down, also with a concoction of about 18 other pills a day. She has had to change her job to a more office based role to allow her to sit at a desk more as any physical exertion enhances the pain. , sometimes her pain is so bad that she can't make it up stairs. The endo / pills make bowell movements irregular and cause lots of pain, also we have to be very mindful of what we eat day to day, exhaustion is pretty much a constant, and then during the night she still experiences night sweats which we think are a side effect of the Zoladex injections which stopped over a year ago. Periods are not in tune with any kind of cycle over the last few years, despite tri-cycling Yasmin / zoladex injections / trying other types of hormone control. these are also very heavy. Amy gets reflexology every week to try and keep on top of things.

[MadMaud]

Hi William,

Like you, my husband of 17 years is incredibly supportive. He has been with me through the 'its all in your mind years and the 'there's nothing more we can do' years and without his understanding it would have been even more crippling. I did all the 'lap' procedures and the meds and then because the meds side-effects were adding insult to injury, I came off them, and the specialists washed their hands of me. They basically refused to give me any more treatment because we asked too many questions.

A friend suggested I visit a natropath that she was seeing for something completely different but equally hard to treat. At last a professional with empathy. She did a few tests for intolerances that might be adding to the misery, plus a few other diagnostic tricks. She put together a diet/nutritional plan plus supplements and herbs. It did mean completely emptying the cupboards and restocking and changing everything that I ate and drank. Luckily my husband was willing to eat mostly what I was going to eat (with the addition of a full English breakfast - can't take that from the man) and even made some of the meals for me. There was trial and error with some of the awful tasting liquid concoctions that the natropath made up for the first few months, and the pain was even worse for the first few months as the body released it's cravings, but then it changed.

I was really strict for the first year and stuck to the diet religiously. Man what a difference. I am 23 years on from being fobbed off by doctors and specialists and manage my endo entirely through diet plus painkillers when I need them.

I do still have bowel/bladder/pain and most of all the other symptoms but they are manageable without the drastic drugs messing up everything else. Sometimes there days, nay even weeks, with hardly any pain.

If everything else isn't working, then I would recommend this route. Luckily, the natropath I went to was incredibly lovely and even just discussing things with her was a medicine in itself. Amy will know what it is like when you know the person you are dealing with thinks you are making it all up - sometimes you feel incredibly alone, even with a supportive partner. I did feel that it wasn't fair for my husband to put up with it all and tried to hide the pain and despair and even gave him the option of leaving to find someone healthy and fertile.

If you try the diet/natropath route, look for referrals from friends. You might find that you have to try sessions with a few different ones initially until you find someone you feel you bond to. It might take a few months to feel any benefit and might even feel worse to start with. A lot of the things you remove from your diet are 'nasties' anyway, regardless of your health. Other things are triggers for bloating, pain, nausea, cramps etc. A toasted teacake will floor me for two days. The good thing I found with doing this was a feeling of empowerment, the fact that my partner was willing to do it with me was double empowerment. Amy may feel that she wants to do these natropath sessions on her own. Don't feel left out, she might just want to vent the whole crapness of endo on someone else instead of you for a change!

I haven't been to see my natropath for over fifteen years now, but wouldn't hesitate if things changed.

My husband is now a yoga teacher (he was a pie-eating builder) and I have found that I can do yoga, and that it actually helps. Can't do it on bad days, but then the breathing techniques and some of the postures are really beneficial for specific pain.

I really hope that you find some relief. A pain-free day is a magical day. A happy picnic with your partner is better than sex in my book!

Thank you for posting and being there for your woman. It is beautiful to see.

Maud x