Fed up

[Boo73]

Hi all, feel very low today. I could cry at the drop of a hat. I am hurting a lot today and have no energy at all. My other half keeps hinting that I don't love him anymore as I'm not jumping on him like I used to. It's not that at all and I have told him so its just that I have no energy and to be honest I don't feel like it. I'm still waiting for a date for my first lap as I haven't had formal diagnosis yet. People have noticed I have started to walk with a stoop and limp, I try not to but that's also due to pain. Sorry to moan but feel lonely as no one really understands in the outside world they just think I'm putting it on sometimes

[Hidden]

I had a lap, just to look inside. I'm not working anymore, because of being sick with something every week. I feel empty and invisible I just stay at home in bed all day everyday, I think I might be slipping into a depression because of this. I keep on thinking of how am I gonna get this Endo pain to stop I cannot and refuse to live with this disease for the rest of my life! It's like my lady parts are damaged and something isn't right down there. Lately my vagina has been irritated and red, ever since I was in the hospital it started to get sore and been getting no better. I dunno if it was because of all the antibiotics or infection. I don't have a hot water bottle I just use a hot towel sometimes. I feel like I have no life since this happened, but I mean I have been improving a little...because when I first started having symptoms it was horrible. To be honest I'm fine other than this constant pain in my womb I feel everyday and my sore vag. Sigh I have to go for a follow up next week and I'll see where to go from there, but this is stressing me out! HELP

[malc12 in reply to Hidden]

I think that when we are unable to function normally we sometimes blame ourselves. If you have to rest all day - that's because of the disease, and there's noting you can do about it. Don't feel guilty on top of all the other emotions, we all have enough rubbish to cope with. The body is straining with all that stuff inside and we live with the pain so it's little wonder we feel exhausted! I also have to sleep loads and used to feel that I had to force myself to be 'normal' and that overcoming the tiredness from Endo was a matter of will-power. It's not! Best of luck with you appointment nest week.

[Jofus89]

Iv recently found out people think I'm putting it on. It's so hard to explain to people what it's like living with these pains. Do you find people say it's 'just period pains'.

I think show your other half these blogs so he can see that it's not just you being silly and that many other women suffer with this!! Unfortunately lack of sex drive is a side effect but you will get your drive back when your out of pain and fatigue x x

[_hope]

Hi, so awful to hear how sad you are. I limp too, and have stopped everything except my job which is such a struggle sometimes. Also hardly ever make love due to pain. This is a tough condition to live with. Tough for our partners too, we haven't even been for s walk since last July! Highlight of the week is a trip to lidl and Costa!

I keep telling myself "pain does not define me" and by the grace of God hang onto my cheerfulness - I feel scared st the thought of getting sad.

Ee have to push, pester, annoy... believe that we are worth helping ... We know the pain is real. there is help to be had and we shouldn't have to fight for it but it seems we do sometimes!

Letting off steam here can help. Its good to be able to just say what we need to.... Some days I have house to myself and feel so relieved to be able to moan with pain instead of holding it!

Keep on keeping on lovely ladies

PAIN DOES NOT DEFINE US, we're still the amazing women we've always been xxxx

[curlyjo in reply to _hope]

Amen! x

[Scooteeder]

Hi,

It can be lonely to live with problems that other people just cannot understand. When you are suffering from unpleasant symptoms of something that has yet to be diagnosed, life can be particularly frustrating, as you feel caught in a "waiting game". YOU know that there IS something wrong, because you can feel it, and live daily with the symptoms - however, nobody else can see it, and you do not yet have a name for it. VERY frustrating!

Endo is one of those frustrating illnesses that can take some time to diagnose, with many women waiting years for confirmation of a diagnosis. My Endo took approximately 9 years to diagnose (I had period problems as a teenager that got overlooked, but then had very bad problems that started again in 2002 - my Endo was not confirmed by Laparoscopy until 2011). A diagnosis of Endo can only be confirmed by lap, so it is good to hear that you re listed for one. Meanwhile, however, I do understand that it is a frustrating, and worrying wait.

Endo can cause a large number of symptoms, and one of the difficult things about it is that many of the symptoms can be remarkably similar to those of other illnesses - adding to the confusion that Doctors may experience trying to diagnose it. Furthermore, individual women all seem to experience Endo differently. Some have Endo but no symptoms, and others have a whole range of symptoms dependent upon where the Endo is located, and what Stage it is.

There DO, however, seem to be some symptoms that are a common experience for many women with Endo - and you are therefore NOT alone in feeling fatigued and lacking in energy. Endo can also cause considerable pain for some women - including pain during and after sex. If this is something you experience, it is not surprising that you might wish to avoid sexual intercourse at times. Sadly, this may well be something that is hard for your partner to understand. Intimacy is a big thing in many relationships; without it, people may start to question how attractive they are. The fact that you are less willing to have sex is perhaps something that leads your partner to ask whether you have gone off him, or are not as attracted to him. This may sound silly to you, but DO remember that our egos are very fragile things... your partner wants to know that you still find him good looking and sexy, and that you are not considering dating other people. In HIS head maybe the fact that you want sex less often is making him wonder if you have gone off him - he feels threatened and a little insecure!

Daft though this may sound, that is NOT as bad as it may look. Clearly, he still feels attracted to you, and wants intimacy in the relationship. Otherwise, he perhaps would not be as worried about the lack of sex. In a way, he is expressing his concern, just not the way you might have expected. Try talking, if you can, honestly and openly. This could offer an opportunity to explain to him how you feel, and what symptoms you are experiencing. You need to make it clear to him that your loss of interest is not due to loss of attraction, but to really genuine pain and discomfort, and to feeling lethargic all the time. THIS is why you are due to have SURGERY. Remind your partner that you would not need to be having surgery if a real, genuine (and pretty unpleasant) illness was not suspected. Remind him that you may also miss intimacy, and give yourselves a chance to talk about this, and try to find out what works for you NOW. Show affection in other ways that allow you to avoid discomfort, but still share intimate moments - hugs, kisses, massage - whatever works for you as a couple, and allows you to "connect".

Right now, you need the support of other people around you - and your partner's is particularly important. It is NOT easy to explain things to others, as they can never really see YOUR perspective. Keep trying! And try to get "clued up" about your suspected illness and treatment - it can help in the long term.

Constant pain and fatigue can be very difficult to live with. That is why it makes sense to try and establish a good, supportive relationship with any medical professionals involved in your care. Forums like this can also help, as you can talk to other people with similar experiences, and people who are further along the road in terms of dealing with Endo.

I do wish you all the very best, and I hope that your lap goes well for you. Make sure to follow any instructions given by the Hospital, and take it easy. Remember that illness and medical treatment can be a frustrating process, and that your symptoms can affect the way you feel. Do NOT ever blame yourself, or feel like "a whinger"... living with illness can be genuinely difficult. Above all, take the very best care of yourself that you can, and remind yourself regularly of who you are, and what you have achieved - and of the people who love you. Support IS out there if you ever need it.

Take care & good luck,

Elaine Ellis.

P.S. a couple of things you could try reading:

1. About Endo symptoms (according to where found in the body) -

endo-resolved.com/symptoms....

2. Telling others about Endometriosis -

endometriosis.org/resources/articles/telling-others-about-endometriosis

[Boo73]

Many thanks ladies for all your advice. I feel a little better today, still in pain but better in myself. I am not going to let this get in the way of life, it may/will hinder it but not get in the way, hope everyone is pain freeish today Paula x

[curlyjo]

Can you think of other pain options? Tramadol worked for me and it does have an anti-depressant element to it so might help you with the blues? If you're feeling this low I think you should go back to your doctor and tell him/her. Sorry but I think your other half needs to know the difference between lust and love; my Dad had to just accept my mum lost her sex drive after she had a hysterectomy and went in to early menopause (she was a cancer risk so not allowed HRT). I don't think my Dad took it personally because they were devoted to one another. You need your partner to be supportive through this difficult stage pre op/diagnosis as it's definitely a scary time. But thank God there's this community on here to support you. I think all of us on here would sympathise with people not understanding the pain this disease can cause. It is a worrying time for you before your lap; because some doctors will make you feel like you're exaggerating the pain so they perhaps don't have to operate on you (I had one do this on me half an hour before my op!!!) but YOU KNOW your body isn't right and you must go with your instinct. You know when the pain isn't normal period pain but something worse and you will know when you get your lap and then be able to deal with it step by step. But I think endo pain is like giving birth; until you've experienced it you don't know what it's like. And our friends just can't empathise fully because they haven't been through it. I do hope things improve for you soon. Just take each day as it comes and take good care of yourself. xx

[Boo73 in reply to curlyjo]

I am lucky and have 3 kids, I would rather go through labour again than have the pains I get x

[_hope]

Boo73. I hear you..... Last time I had pain like this I got pethidine and then a 7lb bundle o joy!

Having such a bad night tonight. Pelvic pain is horrendous and have migraine.. Complete with being sick. Had third prostap injection 3 days ago! I'm meant to be having family party at lovely local tea shop tomorrow afternoon to celebrate my 50th birthday... looks like l might have to let them go without me!