Have you had a hysterectomy and did you keep/not keep your ovaries?

[Noggsy]

Hi ladies, I am in the consultation process of having a hysterectomy. The question is though do I or do I not keep my ovaries? I lean towards them being taken out as I am on zoladex, and stopped hrt due to pains coming back - so in essence if they are taken out and I take a calcium supplement, this will be best.

But I feel to make a better judgement it would be good to listen to others experiences, so please if you have had a hyst with or without ovary removal can you let me know why you had/didn't have them out and how you are post op?

Many thanks

Noggs xxx

[smiley1]

Hi Noggsy

I was diagnosed in 2005 and I must admit my consultant at that time didn't specifically specialise in endo. I was offered the choice to wait for the new endo consultant who was joining her shortly or to go for a hyst. Due to the problems I was having I decided not to wait to see the new consultant I opted for a hyst. I was advised that as my endo was contained to my left side, ovary, pod, uretha that they would not remove my right ovary unless there was endo there and due to my age (35 at that time). I was guided by this advice so had a TAH/LSO in April 2006 but ended up seeing the new endo consultant by the end of that year who eventually decided on another lap in July 2007 when a lot of endo was found plus adhesions. I asked if my right ovary could be removed at the same time but was again told it would only be removed if endo was found there because of my age. Since then I continued to have pain not really having many pain free weeks although some were probably due to adhesion pain not endo pain. I put up with it for 5 years until I started to experience symptoms that I had before I was first diagnosed. I actually moved area earlier this year and had to register with a new surgery which I did with trepidation as my previous dr was so good and understanding. However my new dr is brilliant after the first consultation she suggested I be referred back to the endo consultant but also rang him when he suggested I go on the pill, have a scan and get an appointment. The consultant was brilliant as I thought I was going to have to fight to get my ovary removed but he suggested some options one of which was surgery and he said if I opted for that he wanted to remove my ovary. So the waiting list is four moths and I have started the hormonal treatment which he wanted me to go on. Although regarding hrt he is advising combined hrt first of all as I am still only 42.

What I never realised back in 2007 was that if you leave an ovary there is six times more of a risk of endo returning although to be fair there is still a risk of endo retuning even if everything is removed.

Sorry that my story isn't totally a positive outcome of having a hyst as I know lots of people who have had full or partial hysts, leave ovaries, just take ovaries and being fine afterwards. I think sadly it's down ultimately to each individual but you may well be one of the lucky few who it works for so fingers crossed I wish you the best of luck.

Sx

[Noggsy in reply to smiley1]

Hi Smiley,

Thanks for your experience, and sorry to hear it has been such a journey. I was told by this consultant that if my ovaries are healhy then they will probably leave them. But, as it is the ovaries that fuel the endo, (even microscopic that can't be seen by the human eye), and I am so painfree on zoladex, why they think leaving them in would far outway endo symptoms (as I can't stay on zoladex forever).

I suppose this is the argument I will need to put forward at the next appointment. I just sometimes feel arguing with a person who has studied this all their lives is rather insulting to them, but then it's me who lives with this and know how I feel I will cope with it better?

Thanks again

Noggs xxx

[figgy]

Hi, i had a total hysterectomy at the age of 44, so both my overies were removed. I had endo on both and they were stuck to my pelvis on both sides. I had heard stories about cysts on overies if left in an other problems so i was pleased they were taken out. I am pleased with the control i have over any pain and after 20 years of suffering i feel i have my life back.

Hopefully someone will post if they kept theirs

Hope this helps. X

[Noggsy in reply to figgy]

Thanks Figgy,

I think I will push for ovary removal (as replying to Smiley), it is the ovaries that fuel the endo, and I can't understand how they leaving them in will ar outway the crippling and debilitating pain? And this is the argument I will put forward at the next appointment.

Thanks for your experience, I feel as though I have a bit more knowledge to go back and push for this, as I find it a bit intidimidating arguing with a person who has studied this all their lives - but then I am person who suffers it.

Noggs.xxx

[sjdonkey]

Hi sorrry its a late reply. I had a hysterectomy just under 2 weeks ago. My ovaries and cervix are still in tact cos I am only 29. At the moment I am inclined to say it was the best thing I have ever done. I have lost 3 inches off my waist already as the bloating has gone. As the swelling from the op goes down I'm sure it will be less soon. I am praying to god it stays this way. My doc told me the recovery for a tottal hysterectomy is double what it is for a sub total.

Fingers crossed for you in whatever u decide to do. XX

[Noggsy in reply to sjdonkey]

Thanks SJdonkey,

I hope your recovery carries on as well as it is. Can I ask which did you suffer most with the pain or the bleeding? And did they put you on Zoladex (or similar) before this op to shut down your ovaries to see if this worked? And, if you was on this, were you pain free?

I just feel that because the zoladex has shut down my ovaries and now mostly pain-free that the ovary removal would be the right step - as the HRT I was put on fed the hormone (that would be released from my ovaries), made the pain come bak, albeit not as bad. However, it is good to know that a hyst without cervix and ovary removal can be just as effective.

Thanks again

Noggs xxx

[sjdonkey in reply to Noggsy]

Hi noggs, I was on norothistemine. And also had the implant. This stopped bleeding completely. But didn't stop the pain. I was in agony on a daily basis. The docs refused to take my ovaries out due to my age. But since op I have been pain free, apart from the op pain if that makes sense.

Every woman has different bodies and different responses. Do u have an endo specialist. My doc is a specialist and is awesome.

Hope he/she gives u the right advice and u do exactly what u feel your body is telling you

Sj xxx

[Noggsy in reply to sjdonkey]

Thanks SJ, I don't think he (the top consultant), is an endo specialist, but he works closely with one. For example when I had my lap, he called the endo specialist into surgery and they both worked on me. He has also done cervical cancer procedures on me, and I trust him. He will always ask me what type of treatment I want and if my reasoning is plausable, he will go ahead with my wishes.

That makes me feel a bit more confident that your pain stopped even though you kept your ovaries, should he decide to keep them.

Thanks again for your help.

Noggs xxx

[shrek]

Hi Noggs,

just to say, i had a partial hysterectomy 10yrs ago (womb and cervix) because of endo - all was well for about 7yrs, but then i started having dreadful problems again - the doctors and consultant are now finally realizing its the endo back, and after a 6mth programme of prostap injections, i am more than likely being referred for my ovaries to be removed. ( they refused to do it 10yrs ago as i was only 30)

seemed pointless 2 me - without the ovaries i would probably have been less likely to have the endo return.

i suppose your age will play an important part 4 you - but if i had my way i would have had it all whipped out in one go!!

all the best x

[Noggsy in reply to shrek]

Thanks Shrek - yeah this is my line of thinking take it all out. I have heard similar problems with other ladies who kept theirs. I am going to push for them to be taken out, and at 37 I don't think it will be too bad?!?!?

Thanks again for your experience. It has helped me make my mind up and put a stronger case to the Consultant.

Noggs xxxx

[beaglelady]

HI I firstly had a subtotal hyst had ovaries left in aged 39, I then kept getting bad cysts on left side and it had to be removed at 40, however I had had ovarian drilling and endo surgery done on the right side and it failed shortly after. Early surgical meno is not much fun I have taken the decision to have hrt (I had excision rathern than diathermy and it was all removed at time of op). However I know hrt is a contentious issue with endo. I could not live with severe flushing with lack of sleep, severe joint pain couldnt walk on my right hip and my downstairs was sore and bleeding. Not much fun. I am better on hrt but it is not perfect. I would rather have some quality of life at 41 rather feel 61.

[Noggsy in reply to beaglelady]

Thanks for your experience and taking the itme to reply. I am still thinking about the whole thing and I suppose will not make a decision until I have seen the top man. I think it is such a personal lottery isn't it. You're damned if you and damned if you don't.

I have asked this question on a few other sites, and there seem's to be a pattern forming of women who left their ovaries in, have since been operated on to remove them up to 5/7 years later for recurring/further problems. So I suppose it is a decision of natural or artificial menopause, whereby recurring endo can return in both. But I am wondering if it can be more controlled if I am on HRT??

Were you on any hormone treatments before this (ie Zoladex)? And, are the post-op meno symptoms as bad as a Zoladex menopause?

Many thanks for your help.

[AlleyKatz]

Iv a 6cm cyst on left ovary n attached to my pelvis, uterus is attached front n back if tum loads adhesions from csection which are attched to bladder etc only been in real pain once last yr for month, but always had bad period pain but with tabs I ok. Side effects iv suffered frim has been depression since 13 nn joint pain im 40 now. At times iv thought im mad totally as doc n boy friends family couldnt see or understand why I was so tired, been like a rollercoaster some days after csection just couldnt hardly move so low n pains in joints where burning. Had all tests for arthritis etc. Last nov I was referred to consultant finally told had cyst but to leave alone I asked then do I have endo??? Grrr noooo he said nooo way!!! So when my ca125 started rising last month was referred again but this time I saw specialist had vaginal scan within seconds. I heard word stage 4 endo..gotta have pelvic clearance as its all stuck ..like u I was mortified n who di I ask n what is it???? But went to see him again n hes agreed now to diaognostic lap in jan threw neck as to see whats occuring before big op.. As then can have team on hand..if worst comes if it n cuts into bowel or bladder . Iv just bought endo for dummies from amazon irs good read hun. I know im no help but dont think ur alone.. Im lucky I guess at least now iv a good surgeon whoose going for full acrediation in jan. S other ladies say on here finding a specialist is best. Hope all goes well and hope more ladies having had hysterctomy will share xx good luck and warmest of wishes for a endo pain free life!! X

[Hidden]

Thanks for asking this question , I am considering having a hyst and was wondering about keeping an ovary . At the mo I'm pain free and have a mireana and prostap injections- I've been doing this for 5 yrs - I actually have the 12 wk injection every 10 weeks as I was still bleeding if I had it every 12 wks due to my cycle. I've been pain free due to me not bleeding for 4 yrs

[Brohazy]

Hi there.

I had a hysterectomy 2months ago for stage 4 endo. Since my ovaries were the only thing not affected, the doc decided to leave them in. He told me that they are responsible for more than just oestrogen etc. They are responsible for a 'feel good' factor that cannot be replicated by medication after removal. I am only 34 so I decided to take his advice. I know that there is greater risk of the endo returning but I felt that it was worth the risk to still feel like a younger woman. It has been so hard dealing with the constant pain/bleeding etc that I didn't want to swap that for a guaranteed menopause. I must admit that 2 months on I am recovering well and feel great for the first time in years. It is strange to still have a Monthly cycle but with no period...I guess I will get used to it. I am happy with the decision I made and I hope you get good advice to help you decide what's right for you.

Can I just add, I had all the same reasoning as you before I spoke to the specialist and it was only after he told me of everything else that the ovaries do that I understood that it's more than just taking away the oestrogen.

Anyway, think about it. You can always have ovaries removed at later date but they can't put them back.

God Bless