In need to support: Hi my name is Liz. I am... - Endometriosis UK

Endometriosis UK

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In need to support

LILLY2808 profile image
8 Replies

Hi my name is Liz. I am 37 years old and have been suffering from endometriosis and PCOS for 17 years. I have had a laperotomy and many laparoscopic surgeries to removed cysts and adhsions caused by the condition. I had massive of fertility problems but thankfully did conceive a child 6 years ago. I have been suffering from pain again for last 6 months and when referred back to see the consultant he has now recommended a full hysterectomy and oopherectomy. I have had 2 prostap injections and currently in a chemically induced menopause. The HRT is hard and is causing pain and symptoms in itself. I'm just so fed up!!!

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LILLY2808
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8 Replies

Hi Liz,

I’m sorry you’ve had to go through that! Congratulations on having your child.

Do you think the complete hysterectomy would help you? If so, I would go for it! My aunt who also suffered from endo could not conceive a child due to her problem, and she ended up having a complete hysterectomy and she hasn’t been in pain since.

I hope things get easier for you x

sandy112 profile image
sandy112 in reply to

Morning!! I totally understand the pain you are going thru pain wise. I agree with Zunali my mum also had a Complete hysterectomy and never been in pain since what are your other options if you don’t go through with it will they give u another surgery? X

LILLY2808 profile image
LILLY2808 in reply tosandy112

Morning. Thanks for your reply. I feel so alone in this. They have said no further supportive surgery will be offered. It's such a big step and I'm scared I will still have problems. The pain is much better but the symptoms of menopause are horrendous!! Maybe need a different HRT.

Rach123455 profile image
Rach123455 in reply toLILLY2808

Hi Lilly, I remember my gyn using the exact same words to me “not prepared to do any more conservative surgery”. At the time, I had had 1 lap to remove bilateral endometrioma and managed 4 months of zolodex. I was shocked too, that such a drastic step as a hysterectomy, was all that was left. At the time (Mar 2016, it was less than a year since i’d received the endo diagnosis and I couldn’t face the emotional trauma of a huge op. I fell into a bad depression. That was over 2 years ago, and only now can I face the thought of the op, which is scheduled for Jan. However, I am still debating which is best, staying in pain or menopause symptoms. I know i’m not offering any advice here but I just wanted to acknowledge how scary and confusing this time must be for you xx

LILLY2808 profile image
LILLY2808 in reply toRach123455

Thanks Rach. I understand there is no easy answer to any of this. I suppose just having contact with other people facing the same decision helps. I have had more time than you to get my head round all this though.

Rach123455 profile image
Rach123455

Yes, my reason for signing the consent for hysterectomy (I still want to run for the hills) is because I’m fed up with pain and generally unwell with all the medical treatment options.all It’s mainly taken a toll on my Work record - off work for 6 or 8 weeks now and this can be added to the total of over 365 days since Mar 2015. Then, I’d like to get back to my cycling. I’m 44 and although the chances of pregnancy are slim, my gyn still wanted me to say I didn’t want to pursue IVF. These are enormous decisions, as is the risk of surgery itself. Take your time - happy to chat xx

LILLY2808 profile image
LILLY2808 in reply toRach123455

I have no unrealistic expectations about babies. I feel blessed that I have one. It's the balance that worried me....ive been talking to a pharmacist today and it was reassuring to know that there are different types of HRT that might be better. My hubby is a keen cycling fan.....we used to be so energetic and now I can only just get upstairs!!! I work in an office now and have a very understanding boss, but it definately takes it'

LILLY2808 profile image
LILLY2808 in reply toLILLY2808

It's toll on your work life!! We might get sorted one day!!!

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