Hi all-new & looking for advice :) - Endometriosis UK

Endometriosis UK

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Hi all-new & looking for advice :)

Louisemaria1234 profile image
4 Replies

Hi ,

My name is Louise , 31,live in Warrington & I've had endometriosis since I was 16, in the past year I've been diagnosed with pcos.

I've had numerous laparoscopies, tried every pill (all of which cause heavy bleeding), the hormone patch,prostap & recently the Mirena coil-which caused intense bleeding & pain so bad that I now use morphine every day!

I'm at the end of my tether,I've had this issue for 15 years,it controls every aspect of my life. If I lift,I bleed, sex causes heavy bleeding & intense pain! I have now being diagnosed as anemic & b12 deficiency as I am that run down,I struggle to eat a proper meal as I suffer with horrendous nausea.

I had a gynaecology appointment today & the doctor was fantastic. He removed the coil, and had a good discussion with me.he has agreed to do a hysterectomy if I want one. but has warned me about the risks of having it done at a young age. I have 2 children, so I don't want any more. he has explained about brittle bone, heart disease etc...

Could anyone give me any advice?! I have to go back in 4 months to give my decision & I want to research as much as I can so I know I've made the right decision!

Thank you & sorry it's so long!

Xx

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Louisemaria1234
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Nikki84 profile image
Nikki84

Hi Louise,

I am from Warrington as well, I was diagnosed with PCOS at 17 and have suffered with my cycle since I started at 11, I am now 32 and had my first lap about a month ago were I was diagnosed with stage 4 endometriosis, I have been trying for kids for 8yrs and I am on every pain killer going, morphine patch/liquid morphine/prgabline /paracetamol/ and 5 others, I can't go on the pill or try any others because I want children first, I had my left tube remove during my lap but they couldn't remove the ovary because it was fused to my womb and bladder along with a chocolate cyst, they have told me I stand a better chance of getting pregnant with just the one side now as my surgeon managed to remove some of my PCOS cysts from my right ovary, so I have to try and get pregnant quick before this horrible condition takes over the other side of my womb, I am worried about getting pregnant on so much medication, but I know it will be worth it in the end and then I will think about having it all taken out, but before you decide to do it, do a lot of research as having the hysterectomy is not guaranteed to get rid of the pain.

I guess what I am trying to say, is you are not alone in this, there is lots of ladies on here in the same situation for any advice and support you need. Hope this a helped a little

Sending pain free hugs x

Nikki84 profile image
Nikki84

Sorry can I just ask which doctor/hospital are you under?

Louisemaria1234 profile image
Louisemaria1234 in reply to Nikki84

Hi Nikki,

[edited to comply with our code of conduct]

Don't worry about the baby thing,it will happen! I was told I couldn't get pregnant,was due to Ivf so I was scheduled to have a lap before I started that...on the day of surgery they did a urine test & came back & told me I was pregnant :o :o the 2nd I was taking the pill & was a complete surprise xx

Tillyfloss profile image
Tillyfloss

hi. How is your pain today? I'm in Warrington to.

have you been seen at the bsge centre in Liverpool? I was told id need a hysterectomy by a consultant at Warrington. I had various issues and got a referral to Liverpool they have been brilliant, my endometriosis is grade 4 with a frozen pelvis but the cysts have been removed and my ovaries and tubes left to give us the option of ivf. I had the op 4 weeks ago and I'm mostly comfortable.

do your research as my understanding is is a hysterectomy doesn't always help with endometriosis so speak to as many people as you can to get the full picture.

take care xx

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