I spoke to my consultant yesterday who said he will do a hysterectomy, Im 39 don't want kids as have my niece and nephews living with me so family is complete...he has given me a decision to make about keeping my ovaries or no..I've been on zoladex 3 months past 2 months have been pain free, I have 3 more rounds to go and that's it so I know the pain will be back with a vengeance... I've experienced hot flushes that's all and my mom said I'm lot's calmer as an I'm not in pain....im looking for some advice from anyone that has been through something similar and the impact it's had on them so I can weigh up my options..he will call me in a week for a decision and add me to the waiting list...he did say I have up until the day of surgery to change my mind as well though....
Hysterectomy.. ovaries out or not - Endometriosis UK
Hysterectomy.. ovaries out or not
Hi there….. I can’t comment on your Question but hopefully someone will be able to soon 🤞 so many things to think about and to processI’ve just had my 2nd zoladex injection, after the first one the pain increased then as month wore on did improve(even had 1 pain free day) just had my second…. Two days later really bad pain I’m hoping I start to see an improvement as time goes on. I’ve never had a diagnosis of anything (had ablation oct last year) I was just wondering what your zoladex experience was like to start with
Hope you don’t mind me asking 😊
This is my second time on zoladex had it 8 years ago.. initially I bled for 2 weeks and my mirina coil expelled the consultant said as your womb shrinks with zoladex which is why it probably came out..this is probably why I had pain around that time .I was prescribed tibolone as a HRT if needed but to be fair I haven't needed it, hot flushes are a nightmare but I've learned to cope wear something light to bed and fan handy. My mood has been ok last time I was emotional but this time nothing I'm calmer than normal, I'm just not looking forward to when it stops as doubt my surgery will be by then due to waiting lists.. hopefully you will get some relief it took about 8 weeks to fully settle, j have my 4th in a week and not looking forward to hot flushes in the summer...🥵.. good luck x
My position is quite different to yours, but parts may be of interest. I had/have ‘deep infiltrating endo’. In my late forties I had surgery following ovarian torsion caused by a large endometrioma on my left ovary. When I woke up they had drained the endometrioma on the left ovary but completely removed the right ovary as they discovered a large teratoma tumour had been engulfing it - explains why they ‘couldn’t find’ my right ovary on scans! Anyway, the left ovary developed an endometrioma again quickly and I was put on zoladex. I was then referred to an endo specialist team (thank goodness!). Now here’s the bit relevant to you…… the endo specialist, knowing I only had one ovary, said she would do ‘everything she could to save my ovary’, I said I really didn’t mind, but she was adamant that it was better for me if I could be left with my remaining ovary if at all possible, because the hormones it produced would be of benefit to my body for as long as possible.. When I came out of surgery she told me that she had actually needed to remove my ovary, and had spent around 5 hours excising endo from my insides. Before I left hospital the surgeon referred me to a menopause clinic so that I could immediately be started on HRT, which is what happened. The outcome for me is no endo symptoms since my ovary was removed, but immediate surgical menopause, which was quite dramatic until the hrt was prescribed. So I guess what I’m saying is make yourself fully aware of what the plan would be for you and hrt etc if you go ahead with removal of your ovaries. Incidentally, I still have my uterus, as this specialist female surgeon considered hysterectomy a very last resort, despite my child bearing being complete. Best of luck with your decision making, and make sure to educate yourself as much as possible on the CURRENT information surrounding HRT and it’s benefits. It’s about a whole lot more than just your ability to reproduce, it’s brain, bone and heart benefits too.
Hi I had a full hysterectomy last year(including my ovaries) .I initially didn’t want to get it done but knew I couldn’t carry on either.I decided to do it and it has changed my life.No pain/heavy bleeding feeling rubbish most of the time.No regrets whatsoever .It’s a big decision .Good luck 🙏
Hi there, I’m in a similar situation. Was on prostap for a few years with tibilone hrt working well for me but couldn’t continue due to risk of side effects. Hysterectomy was my only option & my consultant felt that due to my age (45) it was best to remove everything (inc ovaries). I had the total hysterectomy 15 weeks ago and after 2 weeks went back into the hrt. All calmed down n a few weeks and I was expecting lots of menopause related side effects but nothing so far! Hope this helps you, feel free to DM if you have further questions. Good luck!
Thanks x
The chances of the endo coming back are way higher if you leave the ovaries in. If they take the ovaries out you have a good chance it won't reoccur. There are a lot of studies on this I'll try to find something and put it up here. But of course then you will get menopause symptoms very suddenly but it is much more likely to stop the endo coming back.
Hi hysterectomy is an option for me too. Also 39. I want to keep at least one ovary if possible. My right ovary has a large endometrioma so thinking I’ll have to lose that one.
With no ovaries you’d need HRT straight away.
Thanks x
This is the end conculsion of an overview of a range of studies done to see how frequently endo comes back if you have ovaries removed or not.
Conclusion: A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient's age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.
So basically 6 times more likely to have further pain and 8 times more likely to need another operation if ovaries are left in.
This is a link to the whole study. 67 studies were reviewed to get this overview, so yes you would get surgical menopause but far less likley for the endo to come back.
ncbi.nlm.nih.gov/pmc/articl...
Hope this helps.
HiI had a full hysterectomy in Jan 2021 had ovaries out at the age of 27, I can’t tell you how much of a difference it’s had for me no pain no more hospital trips etc after suffering since i was 13/14 it was the best decision for me. I was on zoladex for 6 months before surgery with Hrt to see how I got on with it and I’ve been fine with the hrt since my op. Will be on hrt until my 50’s but I’d rather that than the awful pain that came with it before.
I didn’t want kids so for me it was more of a choice of have them removed now or later on as my surgeon discussed as had many issues with pains in my ovaries before.
Hope this helps in some way x
HiI’ve had two surgeries. One at 26. Uterus out. Second surgery at 39. Every female part out . Ovaries and all. Endo everywhere. The pain (after 5 years of weird leg and pelvic pain went away. It also took 5 years for me to find a good estrogen. My pain came back with a vengeance because NO SURGEN told me it has roots and will grow back. My pain has gone away (I’m f ing 65 now ……) since I went off estradiol . A good dr two years ago told me my horrible pain is endo most likely even with my 65 age. Soooooo……..please go to an endo specialist unlike I did . 🙄. There are people on this site who have give. Much info on what to take after surgery. At this time I’m afraid to take any estrogen and was given wrong info . You can read all these responses and stuff people (.women lol) have written ……in my case my ovaries were in horrible shape with a huge benign tumor stuck to left ovary. I had every female organ removed …….I had to . Welp that’s my lovely story . I’m just saying I finally have a good endo dr . I have no pain except in my back/kidneys which I’m getting to the bottom of no matter how many drs I have to go to.❤️
Hi Auntyhay, I'm due to go in this Tuesday for a hysterectomy and I've been on prostap for 4 months, like you pain free. They were a little bit late giving me my last injection and the pain came back quite quickly, because of this I am opting to get my ovaries removed when I go in as I won't be able to go through surgery just to come out the other end still in pain, I'll keep you posted on how I feel once I've settled a bit. The surgeon did suggest if prostap works for pain relief it would be wise to remove the ovaries as the pain may remain afterwards otherwise, I personally can not take that chance as it was crippling and had a major impact on my life. Good luck with it all, I'll let you know. X
Good luck for Tuesday x
Hi Auntyhay, as promised here's an update post hysterectomy, the surgeon decided to leave my ovaries as they where healthy and advised me to monitor pain and he would "whip them out" in 6 months if pain continued, I'm happy to report that after 3 months I'm virtually pain free, except for a couple of days a month of what I can only describe as period pains in my pelvic area but nothing too bad and no where near like before the rest of the month I'm fine where as that wasn't the case before surgery, I feel I have my life back. Perhaps you could ask for the same kind of solution, a trial with ovaries left in and if pain persists to a level that interferes too much with life then have them removed!? I hope this helps with your decision making, all the best. Hannah x
Ovaries removed rather than full hysterectomy 
Removal or not of ovaries
hysterectomy or not?
Depo, implant or mini pill? 
