Hysterectomy and Oophorectomy or not?

[Mistiek]

I have had continued problems since i was a teenager with painful periods, random bleeding and pain and bleeding during sex. I was diagnosed with cells on the cervix, PCOS and IBS when I was younger.

I was lucky to have been able to have 2 children in the years following with little struggle. After the birth of my second child we decided that we did not want more children and I went back on to contraception... I have now effectively tried every contraception going and none seem to suit me as they make me ill so hubby had the snip... we separated and contraception became a problem again and the bleeding and pain was now an embarrassment with a new partner. I went back to the Gp and asked for my cervix to be sorted and to be steralised and was told they could not do this on the NHS and there is nothing they can do for my cervix... Im a healthcare professional, so I went in my uniform and told her I knew there was something they could do... so she knew she could not argue and sent me to the gynae.

I took this opportunity to tell the gynae everything... he said from all my suffering and pain it sounds like I may have endo and booked me in for a lap where at the same time he was able to steralise me. He found an old spot of endo on my left ovary which he removed.. the recovery was good, my periods settled down, no more random bleeding or bleeding during sex and no more pain.. I was thirlled! this was last year, 9 years after me complaining and asking to see a gynae....

February this year I started with dull aches and back pain, they progressively got worse and around my ovulation time Im in so much pain it becomes debilitating. I was waking up and crawling to the loo where going for a wee hurt so much I wanted to scream and opening my bowels was uncomfortable. I thought it was my digestive system and worried about chrons or diverticulitis.. until I had a random bleed with the pain... I went to the GP who said it sounds like the endo is back.

I was never in this kind of pain before... its now almost constant... every day just varying in strength. Some days I have good days and I'm relatively pain free. I have to make sure my bladder never gets too full as this always hurts and try not standing for too long or going for long walks as the dull ache comes back and is very painful and often sets the pain off again. I was told there is nothing more they can do but would try to combat it with hormones... put me on cerazzett and fuloxetine to help with the mood swings...

The fluoxitine sent me into a massive downwards suicidal spiral and the cerazette made me put on 1/2 stone in a month and I was constantly feeling ill and dizzy again. I have stopped both! and they did not help at all...

This week I have had pain every day and bloating and dizziness, Yesterday I could not move when I woke up.. crawled to the toilet and then stuck myself on the sofa unable to move... I had to call in sick. I went to see the GP who has now finally referred me back to the gynae as they can not do anything more for me now as the pill makes me sick...

I know I will probably have to have another lap... to check if its returned. With the pain I'm in, I'm scared its now on my bladder or bowels or both. I am 36 steralised and fed up.. I want my life back!!! i cant even go shopping for food without being in pain.... I want a hysterectomy and oopherectomy so that it can not spread more and am hoping that its been caught early enough to remove it if it has spread elsewhere.

Would like to hear form those who have had this done or feel the same or any advice on whether its a good idea at my age... considering I cant have children anyways. Any advice would be welcome please...

[Linds123]

My mum had a total hysterectomy at 36 and said it was the best decision, what you need to remember with having this procedure done is that it probably won't get rid of the pain if you go on hrt. My mum didn't do hrt as she reacts badly to all medicine so,went to a homeopath and never had any menopausal symptoms. I am 32 and having another lap next month to see what they can and can't do. Good luck x

[Mistiek in reply to Linds123]

Thanks so much for the reply, I know that it won't take the pain away... sadly. But want all the rest of the crap and periods etc to just stop now and for the endo to not get worse! All the ladies in my family have had early hysterectomy, my gran and mom are no longer on hrt, they control the hormones with homeopathic stuff and have never looked back. It's just a scary op to have... and I want to be as clued up about it all before I see the consultant.

[Linds123 in reply to Mistiek]

I suspect I will need one too but won't know for sure until next month. Everyone I've spoken to has said that it was the best thing ever, I have got so used to the pain now that it is just constant and I almost don't notice it unless it gets really bad so if I do have a hysterectomy I'll probably be saying the same - provided the hrt is avoided! There are lots of pages on the nhs website that you can look at, hope you find the info you need x

[wugsy]

Hi I am 4 weeks post full abdominal hysterectomy and ovaries removed. I felt it the right thing to do as the pain I was in was unbearable and consultant said it was to bad to remove any of the endo. I had a bit of a rough time afterwards as I lost a lot of blood. Now I am starting to feel a lot better than I have been healing well and getting less sore. You have to make sure you have lots of help with everything around the house and take it easy. So far I feel it's the best thing I have done. If you do decide to have it done hope it goes well foe you Endo is such a horrible thing to live with and some people just don't understand.

[Petunias]

Have you ever looked into having excision surgery with a skilled specialist surgeon? A surgeon who is experienced enough will be able to cut out any endo without needing to remove your uterus or ovaries. If the endo is removed efficiently it doesn't grow back or spread - this only appears to happen if it wasn't removed properly in surgery. Theres a list of accredited endo specialist centres on the BSGE website bsge.org.uk and it's a good idea to check your surgeon performs excision surgery not just ablation. Hope this helps. X