To have a hysterectomy or not?

[wendymac]

I went to my GP back in 2009 having felt a small lump in my pelvic area. My GP was great and referred me straight away to a consultant. After having two laps I was diagnosed with endo, had some fibroids and a small cyst on my ovary. I also had a raised tumor marker and had to see a Cancer Nurse. I was so frightened, worried and stressed. Luckily I have a fab husband who has supported me. My Consultant was a very nice chap, a bit vague sometimes and I had to ask the questions. He decided to put me on Zoladex for 3 months. I had these injections at my GP surgery in my tummy. I had no problems at all with these and must admit were a blessing. I could only have 3 unfortunately. My tumor marker came down and the Consultant decided to sign me off with 3 options, live with it, the pill or a full hysterectomy. I went on the pill but I bled for 6 weeks and it was horrendous. I have lived with it for 3 years now.

I'm 42 and have 1 child.

My periods are all over the place, some are every 3 months and lasts for a week but this one has been on and off now for 3 weeks, very painful and severe bloating.

What am I to do????? I would love to hear from some one..

Thank for you for taking the time to read this.

xx

[amberg7]

Gynae have suggested to me quite a few times about having a hysterectomy up to now I have always refused.They told me that the Endo can still grow in other places so it's not always the answer but I don't think it would be as severe if your ovaries an uterus are gone. I've had Endo for 21 yrs and have had every treatment to get rid of it except a hysterectomy,but I always said no just in case I decided to have another baby. Me and my husband have decided no more children and I am giving it some serious thought. If you are sure you dont want any more children,then I suppose it might be the right thing to do.It is a massive decision,one that I have given alot of thought to myself,I worry about the recovery time and then the effects of HRT as i was on Prostap injections for 2 years which induced me into the early menopause and had to take HRT and it didnt agree with me one bit. I really hope you get sorted out. I made the decision to live with it and have paid the price with poor health,chronic lower back and pelvic pain which has now led to mobility problems,depression and anxiety. Good luck with whatever decision you make,we are all different and treatment that suits one person may not suit another, research all your options really well to make sure you make the best decision FOR YOU.

[hillidoos]

hi, i too was offered a hyst but declined i am on zoladex and liviel and feel fine i have had three months on it and have another three to go, i am 52 and my periods started going haywire at the end of last year so i think i was prob starting the meno you could be starting early meno so wonder why you didn;t get to stay on zoladex longer some people are on it for years with fibroids i would go back to doc or gyny best of luck

[Chrissie66]

Wendy, why would they only let you have three Zoladex injections, did they say?

And have they tested your hormone levels to see what's going on with your periods?

My gut reaction towards hysterectomy to 'cure' endo is always don't do it, because it very rarely works, but given your history it may well be the thing to do. Which doesn't help you, I know!

I just think you need to get some more information first...

C xxx

[wendymac]

Thanks for al the comments. It's great to share your experiences as sometimes you feel alone. I had a raised CA-125 and my consultant said it's probably due to the endo but wanted me to see the Cancer Nurse. He then decided to give me 3 lots of zoladex and 3 blood tests and each time the tumor marker came down so he put it down to the endo. I didn't realise you could keep on the Zoladex so will get back to my GP about that. I would really like another child but age is against me and it took us 7 years to get pregnant in the first place!!! I need to go back to my GP but I'm frightened as I know what she will say. I've heard that having a hysterectomy isn't the cure but I've been told that everything will have to be removed. I think more investigations need to be made into endo as it's a dreadful thing to have and that no one seems to understand. Thanks to everyone xxx good luckxxx

[wendymac]

Well after spending 3 days in hospital over the Bank Holiday after having severe pain and bleeding for 3 weeks I've got an appointment with my consultant on the 5th June. I had a CT scan too as I've got two fibroids, a large cyst, enlarged uterus, endo and a mass on the outside of my womb! Doesn't sound great does it? I'm taking Norethiserone to stop the bleeding. I'm hoping for some positive news