Feeling cheated

[Immy1992]

Hi does anyone else feel like they now will not feel as sexy anymore because of this disease yes endometriosis itself is a disease, and everything we must go through to have it diagnosed, the agonising pain, numerous surgerys and internal removal of tissue.

I think I will be single for a lot longer than planned now. I feel weaker and am loosing my body muscle which is just making me look flat everywhere as I'm petite anyway but before I had a good exercise regime.

Now I can't do anything like this due to surgery recovery times and the pain of symptoms and afraid that if I was to when I'm recovered I may cause a flair up and be left in agony regretting it. I won't eat gluten as I'm scared or drink milk in case it will flair up or bloat me, which actually seems to help but is another pain in the ass.

Thank God I am having it removed in surgery soon which should help all of the pain as im stage 4 its spread everywhere and deep in some places, but I don't want more scars inside or out as small as they are from surgery I still don't want them. As Well I'm finding myself not coping with other stresses in work As Well as I used to right now, I'm not as happy atall as I was before I found out 8 days ago now.

I know I'm just moaning about it all and will be ok tomorrow morning... But does anyone else feel upset or angry that this is happening to them as well, and how do you get through these bad days.

Thankyou in advance xx

[Sandy90]

yes I feel the same !!!!its worst thing I’ve ever had

[felic in reply to Sandy90]

Do you take tablets for your pain !

[Sandy90 in reply to felic]

Yes but nothing don’t help my leg is getting really bad pain in my groin mostely and back ace going towards my lung area and bloating look 5 months pregnant and feeling always tired and ill

[Katyt234]

Hello, Yes i feel the same too... especially with the exercise thing, its frustrating and soul destroying, it's completely normal and understandable to feel like this and have a complete melt down about it, but please don't let it consume everything you do. It affects my love life, I'm single too and 30.. that part i am not worried about. I hate how trapped I feel. I think the only answer is to find alternatives, don't let it make us miserable 100% of the time, make the most of the good days and stick to a routine that works better for you.

Being able to moan, cry, shout and scream is part of the process to accepting this sh***y condition, you're allowed to feel upset and angry.. I am sure we all do, but you're not on your own. Hope you feel better this morning Xx

[Immy1992 in reply to Katyt234]

Yes I do feel better thankyou pain is still there. But even more importantly the sunshine is out so I'm hoping to go and enjoy that in a bit

Xxx

[hm89]

This caused such an issue for me. My boyfriend saw me as fragile and poorly and I just wanted us to have a normal sex life. It took us a few months of awkwardness and arguing about it before we fell back into a natural pattern. I had to explain that yes, some times sex will hurt and I might bleed, but he needs to trust that I know my body and what is safe. Being honest is so important and I'm sure you'll find a loving and supportive partner if you communicate well.

As for the exercise, this was a another huge issue for me as I love a really hard HIIT class, about 3 weeks after my surgery I started going to gentle yoga classes and a great class unique to my gym but I'm sure there's an equivalent at most which was light weights and resistance band training and I told the instructor who just said keep it light. It helped me rebuild my strength and now three months later I'm smashing it again. Sometimes I struggle, I get these horrible sharp pains in my lower abdomen for about 2 weeks around my period but I take it easy at these times. The rest of the time, exercise is the one thing that makes me feel most like me again.

[Immy1992 in reply to hm89]

That is good I'm glad your back to yourself that makes me feel better about this. Thankyou. And you go girl !

Xxx

[tracybee]

Totally get it, I love to work out but it has been on the slide due to pain and constantly feeling so tired. It's also hard to feel attractive when your belly can go from a normal size to 8 months pregnant without warning. Be kind to yourself though, this thing is an arse but not what defines you.

[Immy1992 in reply to tracybee]

Yea so true. It's helpfull to know I'm not the only one that feels like it, I was thinking I'm just vain but no lol. Xxx

[Hidden]

Hi, I totally understand your feelings. My way of coping has been to keep incredibly busy with what I am able to (even when it’s just stretching or mild swimming or running just 100m), to stop comparing myself to others and to look around at how many content and successful single and childless people there actually are. Although very often it still feels like things are overwhelming and no amount of pep talking yourself can change those days. Good luck xxx

[Immy1992 in reply to Hidden]

Yes that is an amazing image to picture someone that feels so alone with so many people around them, but putting perspective on it, that IS just A bad day xxx

[SarahMia227]

Absolutely get this - luckily my endo hasn't stopped me exercising so I've not actually gained weight, but I get awful endo belly. It swells up so much that I don't fit into my regular clothes. I used to love wearing tight dresses and crop tops, and I've basically taken them all to the charity shop because I'm terrified I'll wear them and bloat. It means I basically dress in baggy trousers and loose tops.

Combined with the painful sex, and I've never felt less sexy in my life. I get through the bad days by covering up and trying not to think about it to be honest, and by trying to enjoy the good days that I have with my partner.

[Immy1992 in reply to SarahMia227]

Yes thankyou, that is all we can do, I am getting worried about my belly look as Well and wore the same as you did but that is a no go AT THE MOMENT,I'm hoping not forever 😉.. but I am going to enjoy this amazing sunshine in a bit xxx

[Peebles2sarah]

I feel the same way! I have a breakdown every other day lol. But you just have to try to look forward to the days that you feel better and hope that in the future you'll have some pain relief! That's what I ~try to do.

[Immy1992 in reply to Peebles2sarah]

Yes .. well I'm having more surgery to have it all cut out which terrifies me for how bad I will look and feel after that one but it should help with pain for the future xxx

[Peebles2sarah in reply to Immy1992]

I just had my second lap a week ago and it’s been a slow recovery but I know it’ll be worth it. Good luck xx

[Clairey007]

Oh lovely. It's completely normal and OK to feel like this, I do, in fact I think most women who suffer with endo do.

Have you thought about having some counselling? Believe me it really does help to talk about these feelings with a professional. They will be able to give you techniques to help manage your pain and control those thoughts when they pop up. It really is worth doing.

Acupuncture has helped me feel more relaxed too, and I love having regular massages (sports for me as I do exercise a fair amount).

I have my second lap tomorrow and am not looking forward to three weeks out of all my exercise, I know it'll take time to get my fitness back, but I also know it will come back and I'll be stronger for the rest (though I'm going to be really frustrated for 3wks!!)

Are you with a specialist centre with a whole team of medics around you? If so, you should have a pain consultant/specialist nurse that can help you with your pain, and there should also be a psychologist there who can help you with the way you're feeling.

Lastly, you've got this! You are still sexy (however you feel at the moment), and I'm sure the right person for you will come along, probably when you least expect it! 😊

We are all here to support you, hope your lap goes well.

Xxxxxx

[Immy1992 in reply to Clairey007]

Aw thankyou good luck with your second surgery too .

But no specialist team as far as I know but I can just go back to gp for strong pain relief if I need to I suppose as I only have 1 day worth of codeine left now.

And as for counselling service yea I know it sounds bad but I just have no time for it right now but yea I hear what your saying, I am a strong minded healthy girl though so I won't let it deminish me.

And I like your second to last paragraph that word sexy made me smile and he will come along when I least expect it. Lol when he needs to start speed walking my way instead of strolling.

Best wishes, I hope your recovery is not as bad as you fear.

Xxx

[Clairey007 in reply to Immy1992]

How easy is your GP to talk to? If you're going to see them for pain relief anyway, maybe have a chat with them? Self referral talking therapy services will usually do phone consultations, at least for the first one. Fact is, this is your health, you can't work properly if you don't look after yourself, counselling is part of that self-care, and if your work don't understand that then they're stupid!

As for men...i know what you mean! The fact I can't be bothered has nothing to do with the fact there doesn't seem to be anyone out there for me! 😁

Xxx

[Vickysponge357]

I know exactly what you mean! Ever since my most recent issues began I have just ballooned in weight. My meals are not particularly unhealthy, but I’m just in pain and exhausted all the time that in my days off I do bother more than curl into a ball and feel sorry for myself because I just don’t have the strength to do anything else so I have put on 2 and a half stone and I’m currently my heaviest I’ve ever been which is gutting.

I don’t feel sexy at all, and I’m never in the mood for sex because of pain and exhaustion and embarrassment. My fiancé constantly reassured me that he loves me just he way that I am and that he sees me as beautiful but I just find it so hard to believe because I don’t see any of that myself!

Sorry I ended up having a little rant there! 🙈🙈🙈