Why is the wait so long !endo hell - Endometriosis UK

Endometriosis UK
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Why is the wait so long !endo hell

Afrohair
Afrohair

Just want support really I’ve had bleeding from the vag every time I have a number 2 sorry for tmi but it’s getting worse I don’t see a gynaecologist till the 2nd I’ve waited 3 month for that nobody understands the condition I just want to cry!im trying to keep it together but I’m just fed up with everything my partner saw me bleeding when I’m not on my period it’s a new thing to both of us I’ve never bled like this I had to explain it’s the condition another new symptom he said this is going to affect a lot for us I said I know he keeps asking questions I can’t answer cause I’ve only known I’ve had it since April I had to google my symptoms and endo keeps coming up he’s still struggling to understand it I’m finding it even harder to talk about because my partner is a different culture aswell it’s already started to affect our sex life we was planning a baby now I feel guilty for not trying for a baby sooner I kept putting it off because I didn’t know I have this I used to be bubbly and sociable now I can’t go out dancing I’m always tired I can’t eat what everyone eats I’m depressed all the meals I used to eat like a mc Donald’s I can’t do cause I’m scared what it will do to make my fertility bad the damage might be done I don’t know but I feel like how much longer will I wait to get this sorted am I always going to misscarry babies it’s affecting my whole life

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I'm here for you sweetheart, your not alone u promise you from the bottom of my heart, I also get bleeding in between periods, sometimes when I go for a number 2 sometimes just randomly, I get alot of pain as well the tiredness is 1 of my biggest issues it's ruining my life it's absolutely crippling, I'm 42 but feel like 92 , I feel from your posts that your partner isn't very understanding towards you and your illness maybe you should take him to your gyne appointment with you and actually take him into the specialist with you, your putting way to much pressure on yourself to get pregnant and stressing about the maybe of you think you should have got pregnant earlier, you can't live on it's buts and maybe babe youl make yourself even more ill and the endometriosis worse and your physically and mentally wearing yourself out, believe me I no I've been there myself, give yourself a break and if your partner isn't starting to understand and support you then maybe you should rethink if he's right for you love and I'm saying that from experience, I also can't go out or eat what I want I'm forever ill :(, I hope you get some answers at your appointment babe I'm still waiting to see new specialist at a different hospital so God now when and they don't care that in the mean time you just live with the pain, I'm here if you need me love for any support you need as I no how lonely it can feel and super scary being so Ill and not knowing why, sending you big hugs and all my strength x

Thankyou love your right I feel a lot of pressure and I can’t stop thinking the what ifs and so forth it is making me stressed and I feel like it’s so difficult to talk to people I’m close to when I’ve only just discovered I have this and am coming to terms with it myself when I first found out from googling and so forth I have been dismissive because I still don’t have a diagnosis but me not mentioning it when I was pregnant meant I never got any early scans or anything so it still plays on my mind that I’m to blame somehow.all the way through I think my partner might have thought I was exaggerating he’s only just noticing that this is very real and when I’ve mentioned it oh you can have the op everything will be ok till we watched the news and endometriosis came up and it said their is no cure he only just started to realise things and been very ignorant he does ask how I am but he kept saying it would get better like when you fall and it heals I’ve been trying to explain it Dosent heal like that it gets worse he missed my ovulation window last month in order for me to heal when it only gets worse each month thanks for your support

I spent so long beating myself up over the what it's and why's that I knew I had to let it go because my depression and anxiety was through the roof and just made me more tired and more flare ups with the endo I'm also waiting to see if I have fibromyalgia which also causes extreme tiredness so if I have it's a double whammy of tiredness so something else to look forward to lol, your partner sounds like maybe he's starting to understand a bit more then, but don't put yourself under any pressure about what he thinks or how he's feeling towards you, this about you and what's going inside your body it's causing havoc like mine does, be needs to understand that if you have a cut you can put a plaster on, if you have an infection you can take antibiotics, it's not the same with the endo you can't put a plaster on it or take antibiotics to make it better, of course it can be made better but each persons endo is different and takes time to diagnose how bad and how to treat it, so as far as I'm concerned we are warriors and we will keep on fighting babe, keep your chin up and just remember when you feel low feel like no one understands or you feel alone I'm going through it with you and so are many other unheard warriors x

I guess I’m finding it hard because I’d do anything for him and he’s longing for a child even more I feel like my body has failed me and that I took things for granted and never even thought I’d have these issues I’m always trying to put on a brave face and think if he’s taking it like that why can’t I feel the same and think oh I’ll have an operation I will be fine .i think cause I’m always afraid of uncertainty and think of the bad I hate it when I have no control over things

I'm the same with my fiance we been together for 9 years and I worship the ground he walks on like I said to you before he wanted a baby so bad when we 1st got together and I already had children this was before the endo, so I knew I wasnt the reason we couldn't get pregnant then we found out it was him because he took steroids as a youngster we we were devastated but like I said we had a dog instead lol, it definitely helped but will never be a baby and I still get days where I get sad and also think what if and I wish we,d had a baby, men always see the positive side maybe sometimes to try and comfort us but we don't always see it the same way, and it's not as simple as just having a operation it's finding where the scaring is, whether or not it's safe or dangerous to operate on certain areas ( I have scaring on my bladder there's risk of cutting my bladder with laser and ending up with a bag) so I won't have it done I'm not wearing a bag at 42, it's scary when we can't control our own body's and what's going on inside but it's something we all deal with at some point just because your not in control it doesn't make us failures, we still get up every morning and we keep going xx

Calm down. Please ask your GP to refer you to a highly skilled and experienced endometriosis excision surgeon ASAP. Research and find one with excellent reviews, training and experience working in your area and ask to be referred to them.

No regular gynaecologist is trained to treat endometriosis effectively so you must look for a specialist

Afrohair
Afrohair in reply to StefaniaJW

I definitely am but I’m finding it hard not to stress because I feel like my life is on hold I’ve looked at the reviews for the one you recommend and they are very positive I’m just worried about the cost funds and everything I’m not even working right now but on sick and trying to save every penny I have in case I need it I may need it for transportation etc and people to watch my kids if I do have an operation and I don’t know if I should go on pill and wait till I see a specialist to stop growths but my body never agreed with hormones that’s why I stopped taking them 4 year ago

StefaniaJW
StefaniaJW in reply to Afrohair

You need to discuss hormones with the endometriosis specialist. May I ask who you were planning on seeing or getting surgery with (preferably send me the name via private message)?

Afrohair
Afrohair in reply to StefaniaJW

Messaged yoy

StefaniaJW
StefaniaJW in reply to Afrohair

May I ask what number 2 is?

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