Anyone's experienced removal of both ovaries? Good or bad experiences welcome.

Hi I'm trying to decide if having both removed is the correct decision. I'm so torn and would just like a few experiences of anyone who's had it done. Surgical menopause is scaring me after my experience with Zoladex and Prostap.

[Amb43]

Hi Shelly, very interested in this question too. Just been diagnosed through Lap last Wednesday with Endo on both ovaries. Know nothing more until post op appt.

I know they are very busy people, but was only briefly told this while still groggy.

Just wondering what my options might be.

Have they given you any other options? Do you know and understand fully the consequences of removal of both ovaries? Would love to hear what you and others know.

Thanks.

Hope your pain is easy on you today xxx

[stevieflp]

Hi - I don't know what your background is or what you have tried before getting to the point of considering removing your ovaries.

I went through a similar dialemma when my first consultant was a gynae consultant who told me I was 'a mess' and my only hope was a hysteretomy and oophrectomy. After some considerable turmoil, I got myself a referral to an endo specialist surgeon (not a general gynae consultant) and he advocates that you should only have your ovaries removed if something like cancer is indicated - not a guaranteed 'cure for endo. Additionally, your ovaries continue to produce hormones even after the menopause, they do not cease functioning completely - and those hormones (e.g. testosterone) can help to protect you against osteoporosis, stroke and heart attacks etc. This is the reason why they give you add back HRT! Also, even if you do lose your ovaries with a view to preventing oestrogen, your body is capable of making eostrogen in fat cells, skin cells and in the adrenal glands so it might well not be an end to endo. It is far better to see a specialist who can remove the endo.

The thing I learnt on my journey, and is something to be aware of, was that the treatment you get offered is commensurate with the level of experience and specialism of your consultant. One would like to think that if there was another surgeon who could better help you, they would refer you onwards rather than offer you laser when you could have excision etc.

In my case, my first consultant was not going to refer me but offered my a hysterectomy because this is what she specialised in and was the extent of her ability to help me with endo. Had I not questioned this and researched, I would have known no different and would have gone along with it. I now know that a hysterectomy for my level of endo would be like sticking a band-aid on a broken arm. I still would have been riddled with endo and lost my ovaries unnecessarily too. If it does not feel like it is what you want to do, seek another opinion and make sure it is an endo specialist. Endo is often put in the gynae basket but really it is a disease of the peritonium which can affect all abdominal organs and not just gynae.

I decided to keep my ovaries. I underwent 'total radical excision'. This is different to what most doctors do when they say they do excision - usually they just remove patches of endo. That is fine if you do just have patches. Also some endo can be unseen and that would remain and so back you go again for more patches to be removed.

Total radical excision removes the whole lining of your peritonium, thus removing all seen and unseen endo and heals cleanly with less adhesion risk. My ovaries were also damaged but the surgeon was able to clear them and performed "temporary ovarian suspension" which is a large looped stitch that pulls them forward towards the tummy wall whilst the rest is healing. The stitch is taken out and the ovaries fall back into their normal position. I was horrified to read on here that one lady was advised to have her ovaries removed because 'they will likely just get stuck up again anyway'.

One never knows if you are making the right decision - I know if I end up with ovarian cancer at some point, I will wish I had got rid of them maybe - who knows - but at that time without cancer, it felt like the right thing to do to remove the endo and keep the ovaries.

[Hidden in reply to stevieflp]

Hi Amb43 and stevieflip ..thanks for your replies and I'm sorry in advance for my rambling a below..... where do I start.. At the beginning I suppose.. I was diagnosed in April 2010 during a lap to drain a cyst, the lap went wrong at my local hospital and I ended up with a full laparotomy and the Endo diagnosis which explained the immense pain I had been in for as long as I could remember. Leaving even me thinking I was imagining it at times!! I was put on 6 zoladex shots that didn't do much, but I had a little pain relief for a couple of months. The pain came back actually worse than ever within 2 weeks and I missed my sons 21st because of it.

At my next Gynae appt I was a bit more clued up on it and asked for excision and my everything separated as they had told me my womb was stuck to my bowel. He looked horrified and just said they wouldn't touch me after what happened during the lap and that I was just too inflamed inside to go near. I went away in tears and through reading up realised I was able to request a 2nd opinion from a specialist centre. They tried to stop me, but I insisted and eventually was referred to a specialist centre off "the list".

I saw him in may 2011 and was amazed at the difference in the treatment and attitude of him against the shocking attitude from my local hospital. I was booked in for August 2011 for excision and when he went in I had a totally frozen pelvis with my tubes not only stuck to each other but to my rectum. I was great for 3 months and then got the familiar very low pains in my abdomen. After5 days I went to my doctor and he showed me the consultants letter that said I had Endo on my sigmoid colon that had been left.. Probably because there was no bowel surgeon at my excision... I'm not sure and have been too tongue tied when I've seen him since to ask!!

I went for my 6 month check up and saw a registrar who could not even read his writing and was no use and told me to come back in 6 months. I eventually saw him privately in early July 12 and he said if I took Prostap and it helped he would take my ovaries out.

Well I started on it and felt like I was dying for 10 weeks but persevered and I was working as well - but from home so that helps a lot. After a while I did feel better in myself and managed to go to Florida and sit for a good length of time which I'd not managed in many years as I always felt I'd been kicked underneath and felt very very bruised 'under there'!!. I had my last injection on 30th November and have yet to have a period ....but saying that I had a thermal balloon ablation in 2005 to stop heavy periods - which at the time also took my pain away for 2 years! I still had very light periods but the pain came back worse than ever and I ended up at A & E several times. (I'm 47) I've had rumblings though but no bleeding from there.

I saw the specialist Gynae 2 weeks ago and I asked about having the Endo off my bowel without ovary removal - he just asked had the Prostap made things in that area better- which they had - but I did tell him that my bowel is now bleeding profusely and that started again 6 wks after the Prostap ended. He just said if the Prostap had helped with my bowel ... taking my ovaries out would do the same thing.

I'm booked in for June but am having major fears about the decision to the point where I'm more in favour of keeping them and seeing how it goes.

My fear is that if I say I'm not having them out he will still do no further excision or treat my bowel even though as a specialist centre they are set up for just my scenario. The only reason I kept on with the Prostap is that as a specialist centre I thought they would offer bowel treatment if I said I didn't want my ovaries removed but to no avail!

Everything you have written I know about and I think that is why I have major fears. I think I was doubting my own research!! Putting it down in writing has actually helped as I don't really have anyone close to talk to about this.

I would love to go to Yorkshire and see your surgeon I've even thought about asking my dad to help me. My son is currently at Uni and I'm having to pay his tuition fees year by year as he cant get a loan as its his 2nd degree... so any cash I have for the next 4 years is taken up with his fees.

Thanks both for the replies and your excellent advice that I'm sure will help many others on here as well as me. X