I'm feeling incredibly low at the moment. I'm awaiting my first gynaecologist appointment but it's already been agreed I will have a lap after I blacked out due to pain a few weeks ago and admitted to hospital.
The thing I am finding hardest at the moment is the lack of control I have over my life. The pain and fatigue makes me so angry sometimes and it's so unlike me. I really don't know how my other half puts up with, I'm so horrible sometimes and then it only
makes me hate myself and my body even more! I'm usually really strong, I've been a carer for my mum due to brain tumours and rheumy arthritis but at the moment I struggle to get out of bed. How do you deal with the low days?
The other thing that is bothering me most is the pain caused by sex. I literally cannot walk even after being gentle. I don't want to get out off it as I was assaulted 2 years ago and it took a year to be comfortable again. Anybody have tips to coping?
Sorry this is so long. It's just days like today you need help. I'm on my way to my aunty's funeral and I have a deep dull ache from all the stress and I just want to be there for my family
Really appreciate it if you take the time to read/reply
F xx
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FairFacedFairy
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Big hugs! I sympathise completely. I have recently been diagnosed (have you had a definite diagnosis yet?) and even though I've been living with pain, fatigue, mood swings etc etc for years, I sometimes feel overwhelmed by the knowledge that there is no cure for endo. Is your partner sympathetic to you and understands its the pain that makes you lash out? I know its a huge help if they are - sometimes I find I just need a big cuddle to make me feel better emotionally. Or i give my cats a cuddle if I'm home by myself. I also find stress makes my symptoms worse, I've had a really busy crappy day at work, had a Prostap injection last Thursday and am waiting for it to 'kick in' - meantime the stabbing pains in my thigh, rectum and pelvis are making me gasp! SO its time for a heatpad and a sit down before I make our tea. I've recently learnt not to try and struggle through everything and tell my self its ok to rest for a bit - everything will still get done, it might just take a bit longer! I think we have such busy lives that we tend to feel guilty for having a bit of 'me time', but with something like Endo one of the most important things is to look after yourself as much as you can and listen to what your body is telling you it needs (even if its chocolate!). As for painful sex - can't really help you there as my libido has pretty much vanished! Sorry this is such a long reply, hope you get through the funeral ok and can then relax.
Yes, pain tends to use up my reserves of patience so I might be a bit short with my husband.
I think it's perfectly normal to feel so angry and be horrible. I went through that a few months ago when I was diagnosed a second time. It's a very daunting situation to be in and the seeming lack of control is difficult to come to terms with. I allowed myself the luxury of a good whinge and a cry or two and that kind of helped before I could move on. The fact that you are here asking questions means you want you get out of that rut now.
The approach suggested by CharlieSays is really good. Struggling through can just make it worse. Are you taking any pain relief? Do they work? Until you have your gynae appt could you go to your GP for something to get you through until your lap?
Try focussing on what's positive. You are going to have a lap which is the first step to having a better understanding your situation and therefore how to treat you. Many women have to really fight to get a lap. You also have someone to cuddle you!
About you partner, if you haven't already done so, tell him that you appreciate how well he puts up with you because you are aware that you are not easy to be around when you're in pain. Tell him you don't mean to be horrible to him but it just comes out that way. You are understandably angry and he gets the fall out. Pain can frazzle your brain. If I've noticed that I haven't been that nice to my husband I make a conscious effort to be kind to him. It balances out the bad times (which are thankfully rare!)
The way I try to get a bit of 'control' over things is by making a huge effort to learn as much as I can about endo and developing a really healthy eating plan to support my poor body. There is an 'endo diet' but some people are daunted by the restrictions. It's not a 'cure' as such but using some of the elements might make you body better able to deal with the pain. I feel a lot better in myself for being on it and I my moods are more even. I lost about a stone and I think it has helped me a lot. Do a search top right for 'endo diet' and plenty will come up. Elicit the support of your partner and ask for his help getting you to eat really healthy. My husband helped me a lot and he felt less like a bystander in the whole thing.
Can't help on the sex front either! No libido and hurts too much!
Really sorry to hear about your aunt. Hope you feel a bit better today. x
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