Fed up: Does anyone else feel like shit? I... - Endometriosis UK

Endometriosis UK

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Fed up

Jess-Louisa profile image
13 Replies

Does anyone else feel like shit? I’ve been put on a waiting list for surgery but just want to know what’s so wrong with my body. I can’t have a sex life which is difficult being 19, I literally want to feel normal. I’m fed up of painkillers 24/7 I don’t want to live my life like this. I just want answers and something to make me feel like someone else my age who can have an intimate relationship with someone.

Needed to get that out somewhere where other people might understand

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Jess-Louisa profile image
Jess-Louisa
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13 Replies
Martha79 profile image
Martha79

Hello, I’m sorry to hear your feeling so fed up. Please try & stay strong. Do you know how long the waiting list is for surgery? X

Jess-Louisa profile image
Jess-Louisa in reply to Martha79

Up to 12 months:( x

Martha79 profile image
Martha79 in reply to Jess-Louisa

That seems like a very long time. I think I must have been lucky when I had mine but it was a few years ago. I ended up choosing a hospital out of area for treatment as I had a bad experience at my local hospital. I’m sorry you have to wait such a long time. X

Jess-Louisa profile image
Jess-Louisa in reply to Martha79

It’s not your fault silly. How did you choose another hospital? Was it a private one? X

Martha79 profile image
Martha79 in reply to Jess-Louisa

I ended up paying for a private initial appointment with a consultant I researched and read about online! He then did my laparoscopy on the nhs. He was the only dr that ever really listened to me and understood. I had to wait about 3 months for my laparoscopy. I’m sure you have the right to choose where you have your treatment. I can’t remember the exact details of what I read but it is online somewhere. X

Martha79 profile image
Martha79 in reply to Jess-Louisa

nhs.uk/using-the-nhs/nhs-se...

Martha79 profile image
Martha79 in reply to Martha79

Sorry if you already know this information

MeshaW profile image
MeshaW

Hello Jess,

I’m sorry you’re going through this. You are not alone. I was 21 when I found out I had severe endometriosis.

I know it’s can be annoying having to rely on painkillers but don’t give up. Even if you can’t have a sex life right about now, there’s nothing wrong with talking to a guy/girl. Everyone deserves to love 💖

Good luck & I hope things get better

X

Jess-Louisa profile image
Jess-Louisa in reply to MeshaW

Thank you, just frustrating as it’s a big part of a relationship, and in a few years time I would like to start a family but I’m scared that will never happen xx

MeshaW profile image
MeshaW in reply to Jess-Louisa

I know Jess, I’m in a similar situation right now aswell. Don’t think about the future (I know it’s easy said than done), but you getting better and accepting your circumstances.

Xx

Just_Marnie profile image
Just_Marnie

Sorry to hear how long the waiting time is going to be, mine was looking the same but I wrote a complaint against the hospital as they had put me in for the operation twice and then cancelled it the day before both times.

I have now had my lap yesterday and been diagnosed with stage 4 endometriosis, but am still none the wiser to if I have vaginismus which is what causes me to not be intimate with my boyfriend. Like you I am 19 and it is hard when no one truest understand when you say it hurts.

I hope you get a date soon xx

SarahMia227 profile image
SarahMia227

I'm sorry to hear you're going through this. I'm 23, but I started having painful sex at 20, so I know how frustrating it is when you just want to be close to your partner and you can't. For what it's worth, I've been with my partner 4 years (I started getting the pain maybe 8 months into dating), and he loves me just as much, so it is possible to have a relationship with someone without sex. Hopefully the operation will give you some answers xx

StefaniaJW profile image
StefaniaJW

If you are only following a pain-management system (painkillers and opioids or such), your pain will worsen and worsen.

You need to look for an endo specialist in your area and get on a dienogest-based birth control pill immediately (or norethisterone acetate alternatively).

Also, you should consider laparoscopy carried our by a REAL EXPERT with extensive experience in endo surgery.

Wish you the best!

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