is the end in sight?: 3 weeks today i am... - Endometriosis UK

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is the end in sight?

CLS1 profile image
CLS1
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3 weeks today i am booked in to have a hysterectomy & although my consultant has told me i will never be pain free i should be 70 to 80% better than i am now. It has been a very difficult decision to make as i am only 38. although i am blessed to have 2 fantastic children i am not sure that this was the route i wanted to go down especially as i am going to have my overies removed as well so i am going to wake up to a full blown menapause and i really do not want to take hrt as i have read that it can cause the endo to come back even after hysterectomy. But like many of us i think i have just reached a point where no treament works - or not for very long and i am sick of being poked, proded and pumped full of hormones. After suffering with this condition since i was 12 but only to finally be diagnosed 3 years ago i think it is finally time to take the drastic action and try and get some quality of life back if only for the sanity of my family. I just hope that i am making the right decision.

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11 Replies

Hi

I am in the same position as you, I am 38 have 2 children and made the decision to have a hysterectomy. I have decided to keep my ovaries as the surgeon said I am still young. I hope like you that this will be the end of it all! I have had many comments most positive but some very against it. Some people don't understand that you get to the point where you will try anything to have a normal life (what ever normal is).

Good luck xx

CLS1 profile image
CLS1

Hi Miranda it's nice to know I'm not alone. I wanted to keep my ovaries but my consultant advised against because when I had 6 months of chemically induced menopause I had a lot less pain, so he concluded that they were feeding the situation. A lot of people tell me that it is not a cure as it can come back but also a lot tell me that having a hysterectomy sooner rather than later is more effective as there is less damage to other organs. I already have damage to my bowl & I really don't want it to get any worse. Plus I have had cancerous cells removed 3 times. So when u weigh up the facts it's not really a decision. When r u booked in for your op?

JEWELS profile image
JEWELS

Good luck ladies .. Had mine at 42 never regretted it .. Was fine for a year but have some pain but nowhere near like before... I had ovaries removed as well as didn't want another op a few years later to remove as is this is always nearly the case.

I wish you both a much better quality of life after you op xx

smiley1 profile image
smiley1

Hi good luck with your op. I had my hyst when I was 36 but was persuaded by my consultant that if my right ovary was free of endo it would be better for me to keep it due to my age. This is a decision I came to regret because within a year of my hyst I was having more surgery for endo but again my right ovary was not removed. Like you I am fed up with being prodded, poked and pumped full of drugs so after 5 years of putting up with it and for the sake of my own sanity I am going back to see the consultant again and am hoping to see if I can get my ovary finally removed.

Not got my date yet, they have said in approx 16 weeks. I've had my pre-op assessment and have been given my bowel prep now just need to have my injection 1 month before. Having a crap day and I come home everyday for lunch just in case my appointment has come (how sad am I).

I hope your op goes well and you feel relieved afterwards.

xx

Hi again.

Do you think I should ask to have my ovaries removed during the op. I really don't want to have to go through all of this again?

roxiroo profile image
roxiroo in reply to

I had a hysterectomy at the age of 30 (I'm now 40) I chose to have my ovaries removed too, I couldn't bare the thought of more pain and more surgery, ask your consultant lots of questions, I asked what the chances were with or without the ovaries of there being any further pain or endo returning, the implications of having the ovaries out, and things like that. It is a very emotional time for you, I wish you all the best.

CLS1 profile image
CLS1

i was the same waiting for my appointment to come through and when it did i just sat & cried. It seems that having your overies removed improves your chances of it not coming back so maybe it is worth discussing with your consultant - its all scary, life would be much easier if we had a crystal ball

Everyone keeps on asking me if i'm ok with having it done. I am fine with it right now but I know that when my appointment comes it will seem very real and I will start to worry.

Thanks, I will speak to the consultant when i'm admitted.

Beks04 profile image
Beks04

I'm 38, no children and am just over a week post hysterectomy plus removal of my ovaries. It was a difficult decision to make - although my husband and I were sure we didn't want children. Even on the day of my surgery, it felt like such an extreme solution. But my consultant confirmed afterwards that I had done the right thing - the endo being worse than the laparoscopy had indicated and my left ureter being embedded in my ovary. Obviously I am in pain at present - although it improves each day - and certainly I don't have that familiar tight band round my abdomen and no pain on opening my bowels! A revelation!

Its still early days but I am sure that I made the right decision. Better to have the surgery now and for it to be final than to have undergo further surgery when I'm older. I'm not concerned about the HRT - realistically its probably something I could stop around the age of 50.

I wish you all the best with your surgery and the difficult decisions you have to make.

salsaem profile image
salsaem

I just turned 41 and had my second lap last week. Im thinking of having a hysterectomy as have tried most treatments and have the mirena at the moment which has made matters worse. I have my next gynae appointment in 2 wks. I was told that everything had to be removed or endo could come back. I have cysts and fibroids also. I was also told that having adhesions on my bladder might be complicated to remove without leaving more scar tissue. I have mild endo but I have had the symptoms since i was 13 and most days I have one or two symptoms so I have had enough. I am real worried about having a prolapse as heard that was a real possibility after the hysterectomy. Anyone been told this??

Good luck with your surgery.

x

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