Total laprascopic hysterectomy for endo - do I ask for a second opinion?

[Sarah1979]

Hi everyone

Been struggling for about 5 years now with pain all the time and heavy prolonged periods. After years of pushing I was finally allowed to have a diagnostic laparoscopy and they found stage 2 endo with adhesions that had stuck my bowel to my uterus.

The adhesions and endo were removed but I am still struggling with pain every day. I am constantly aware of my uterus and have cramping period type pains that extend all the way down my legs in to my knees.

It's uncomfortable and makes me feel tired and depressed but it doesn't stop me from working so I'm grateful that I don't have it as bad as some of you ladies.

I went back to see my consultant on Thursday about having a hysterectomy. I am keen to keep my ovaries and the conversation went like this. You are only 34........ you will have to take HRT for 20 years...... I WILL be taking your ovaries if you have this procedure!!

I've had Lupron/Zoladex/Prostap and there is no way that I want to make myself feel like that if I have the choice but it would seem the decision has been taken from me. It's either have my ovaries and uterus removed or nothing at all.

Would you ask for a second opinion? And how do I do this? Do I speak with my GP amd ask for another referral?

I'm currently giving the pill another go to see if that will help me with the pain so that I don;t have to have a hysterectomy at all.

I just want to get back to being my normal fun loving self rather than this moaning mess I've become.

Thanks in advance for any responses

[Chrissie66]

Hi Sarah

Definitely get a second opinion, because this doesn't make any sense. I understand taking the womb away if the majority of your pain is coming from there but why are they taking your ovaries too? As your consultant said, you're only 34, you still need your ovaries. And if you haven't exhausted all of the possibilities through medication, going straight to a full hysterectomy is a huge leap, especially for stage 2 endo.

C xxx

[Sarah1979]

I've tried everything Chrissie!

The best treatment for me was Zoladex which took my pain away more or less completely until I reach the 8th month of treatment and then the pain started to creep back in.

The reason for her wanting to take my ovaries is so that I don't produce oestrogen which will mean there is no chance of the endo returning. I suppose as it was on my bowel there is a chance that it might return even after having my womb taken away.

I just feel a bit robbed that I can't make the decision myself.

Thanks for your reply

[Chrissie66]

Hi again Sarah

I'm sorry, I didn't read your post properly, and obviously you've got other things going on that make the situation more complicated for you..

But I still say get a second opinion. She can't take your ovaries unless you specifically consent to it. Has she said why she is so eager to be rid of them?

C xxx

[cjb-75]

Hugs, it's devastating considering such an option so young isn't it?

I've been recommended to have a full pelvic clearance, womb, overies, tubes, cervix. I'm only 37 and we're ttc at the moment. I've been on the endo diet and it's made a huge difference to my pain. If it gets worse / unbearable again then I'll be going back for a second opinion and asking for a referral to one of the centres on this site.

bsge.org.uk/endometriosis-c...

I want to try the least drastic option first. If required they can keep your ovaries as it massively reduces the side effects, but perhaps your endo is badly effecting your ovaries which is why your consultant suggested it. Ask him why he's recommending a full hysterectomy.

I know what you feel about the decision, when I was told I felt devastated and like there was no other option, but searching around on these forums and online I've found an approach I'm happy with, which for me is 1) try the diet, 2) try drugs again, 3) get a second opinion to see if they can excise the endo my consultant couldn't get to, 4) hysterectomy as the final resort, - especially as a hysterectomy is not necessarily a cure and you're at greater risk of osteoporosis, heart disease etc and need HRT for the rest of life!

Also for you do you know if the adhesions and endo were removed with excision or diathermy? as excision is more effective. Endo does come back, my surgeon has given us 6 months to ttc after my lap which cleared my womb, but didn't touch the rectum, cervix, sacral utero ligaments or pouch of douglas!!!

Best of luck and I hope you come to a decision that doesn't feel like it's being made for you!

Love

Charlotte

[cjb-75 in reply to cjb-75]

Sorry just properly read your follow up, it's for the oestrogen - I'd still consider getting a second opinion, as perhaps if you went for it they could do it in two stages -keep them in and then if it doesn't help take them out? Also your consultant is a she not he! Sorry.

[confused91 in reply to cjb-75]

I would say the same here too,

i would get a second opion. where is the harm in asking, if they say the same then at least it may make u feel more reassured that its the best medical option.

But id ask if they could do it in two stages xx

[jens2]

Try and find a specialist who will preserve the ovaries (there is some information on preserving the ovaries here: endometriosis-consultant.co...