Can anyone on here who has had hysterecto... - Endometriosis UK

Endometriosis UK
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Can anyone on here who has had hysterectomy tell me their experiences


I have recently been diagnosed with endo, choc cysts, adenmyosis and a fibroid. Got to go back to see gynea beginning Dec will be having hysterectomy next year. I have suffered with problems for years and had ablation done almost 4 years ago. Was under urologist last Xmas for pains, blood in urine but given all clear by them so think it was endo/adenymosis. I'm not sure I have confidence in my gynea and I'm seeing gp tomorrow to discuss 2nd opinion and referral to endometriosis centre. So I'm asking where did people have their hysterectomy. Did they have endo removed at same time. Did they take or leave ovarys - I've been told to decide. As has endo reccured since. Thanks in advance ladies

12 Replies

Hi Hun, I'm in the exact same position as you, with exactly the same symptoms except 3 fibroids not one. I'm due to have full hysto inc overies, will be put on Livial. I will be going to Adenbrookes, I'm dreading it as frightened of putting on weight as I'm chubby already! Let me know how you get on. They told me overies had to go as it is them that make endo grow even after hysto. Lots of love. Sarah.

Hi, I had a hysterectomy a few years ago for exactly the same reasons as you except I didn't have fibroids. Fortunately my husband had private health care with work so had it done privately. I had my ovaries removed and went straight onto HRT. I'm now on Livial. I think I had as much as the endo removed as possible at the same time and it was quite a long operation.

I think that having ovaries removed is definitely recommended to stop the supply of oestrogen and hence the endo. However it did cause me a few problems. It's quite a shock to have all those hormones removed overnight and if young enough they will want to put you on HRT. I found that the HRT took a good couple of years to sort out. I swapped between Livial and another, can't remember which one now, which made me feel terrible. Overall I have definitely experienced a drop in my sex drive and drive generally (though I've read reports that Livial can increase sex drive in some people so maybe I've just been unlucky!). Fortunately I had a very sympathetic gynaecologist who I could keep in touch with to sort out HRT and other post op problems so it is worth having a GP/consultant lined up that you can trust.

With regard to endo returning - even though I lost my ovaries I did have pains return after about six months that were very similar to ones I had had before. It has taken a long time to convince my GP that they are endo pains and have been sent to gastroenterolgists etc. I don't think my consultant ever thought it was the endo as he was convinced that removing my ovaries would be the end of it. I'm still getting the pains now so am trying to control my diet to see if that helps, though have no self control on that front so finding it a bit difficult! I did have some endo on my bowel that couldn't be removed without a bowel surgeon so maybe that is what is causing the problem.

However it's nothing like as bad as it was before - I only get one type of nagging pain with some tiredness and am never curled up in agony like I used to be.

Hope all this helps. Good luck.

Thanks Jennie for reply. Gynea is saw was through nhs but at private hospital. I am 44 so if I lose ovaries will need hrt. Worried about loss of sex drive - none seems to tell you about that. I hope you get your pain sorted I believe I have endo on my bowel but until I opened up I won't know but that's why I'm worried about being in pain still after

Thanks for replying. I ought to say that I don't regret having had the op and the loss of sex drive might just be me - I don't know how common it is. I was the same age as you and a lot of my friends have been complaining about the same thing because they are approaching menopause, so you never know things might not have been that much different anyway! On the plus side while they are all suffering with hot flushes etc I haven't had anything like that at all. And my pain really isn't that bad now - just a bit annoying.

I have been in turmoil trying to decide if hysterectomy would improve or worsen my condition. I have a history of extensive endo and adhesions have been a big problem. One Gp said see an endo gyne specialist re more surgery, probably hysterectomy. The other said that the risk of adhesions was high and to seriously try and avoid it. I am so confused but do remember attending a talk with a leading endo adhesion gyne specialist who teaches other gynes. I asked him a question about keeping ovaries or an ovary and he indicated that it is best to remove both ovaries as the risk of ovarian cancer is trebled long term if they are kept! A sobering thought but I thought I would pass this on for your consideration.

Thanks for your reply. It's not an easy decision to make I cried with relief when told I could have a hysterectomy. I am 44 and very lucky to have children which makes the decision easier. I just worry about pain after/ lack of sex drive etc. Hope you get the right help to make a decision. Let me know what to you decide and when you have op

Hi, have had exactly the same diagnosis in the last week, and have discussed with my gynaecologist the extent of the hysterectomy (now it's on the table I want it done as soon as possible) however I was in turmoil about whether or not to have a full hysterectomy including cervix (I have concerns about the loss of sexual function) but have been recommended to have that taken as well to stop the endo/adenmyosis, I can't keep my ovaries as they are adhered to my womb anyway and pain has never been the major factor it's more to regulate my hormones and the length that periods go on for (2 weeks) so with the inevitable hormones raging, I end up with about 1 week of feeling relatively normal! Have friends who have different stories as to keeping/losing the cervix, and the impact of that, which isn't helping particularly in my decision making process! Hope you are able to make a decision soon.

michelle2013 in reply to MJP2301

Thanks for replying. Gynea never even mentioned cervix to me.. so i haven't a clue about that. I think due to adenymosis it is best it goes. I just want to be pain free at moment I have two blocks of three day s where I am pain free days 9-10-12 and 15-16-17. But zolidex injection has messed that up this month as had bad pain on 9-10-11 so trading it a day at a time pain wise. Apparently Dr has wrote a prescription for new pain meds for me since I saw nurse today. Seeing Dr on thur. I am lucky since ablation no more heavy periods it's pain and hormones I need to sort. Hope you make a decision soon and let me know when you will have your op

Hi everyone

I'm waiting for a hysterectomy, removal of endo and possible bowel surgery. I have had lap and endo removed from my belly button in April. I am full of it, with adhesions everywhere, an obliterated pouch of douglas, my bowel is stuck to my womb, endo cysts on my bowel etc, etc.. I have an appointment for a sigmoidoscopy (camera up the behind!) in 2 weeks to determine what surgery I need. I have an amazing Gynae who is a nationally recognised expert in endo and keyhole surgery.

He has advised me what I need to have done and not asked me what I want, but obviously only if I am in agreement with him. He hopes to be able to rescue one ovary, as he wants to leave me with one as it will manage my hormones and be better for me in the long term. He was not inclined to just take it all away and put me on HRT, as it wasn't the best option. I will be having my cervix removed too and all will be done by keyhole, even the bowel surgery, to reduce scar tissue. He has made it very clear that the op will give me a better quality of life than I am having now, and that I may not be pain free, but it will be manageable.

It must be so hard being put in a situation which is already life consuming to have to make decisions on something that we have not chosen to be experts in. Thank goodness we can all communicate and help each other, as right now I'm not in a good place but feel better if I can help someone with the knowledge I have gained. I trust in my Gynae, it's his speciality and he has chosen to take on my case from another consultant as I am only the 3rd case of umbilical endo that he has seen in 25 years and I think he wants to take on the challenge!

I know I am more fortunate than others, I'm 40 and have my 2 children, so I'm trying not to moan as I know I am one of the lucky ones.

Cathy XX

michelle2013 in reply to faffy73

Hi Cathy thanks for replying. Did you have endo removed through your belly button or from it. Sounds interesting umbilical endo. Well I mean interesting as never heard of endo there but I expect it is more painful to you then interesting. On reading posts on here from other people I consider myself lucky I have five wonderful children after going through six pregnancies. My sister has endo and had suffered years of heartache before she had her two children. I just don't know what to decide I spoke to nurse yest about all my concerns and she sent a note to gp explaining my worries and booked me appt to see gp then ring me back to tell me I have to have 2nd and 3rd zolidex injections. She has written me a prescription for different pain killers and endo is the emdometrium bleeding and if I have a hysterectomy I will no longer have any emdometrium as I won't have a womb so won't have any more pain. If only it was that easy. Good luck with your camera hope it goes"well" last Xmas eve I had a camera into my bladder this year I am hoping for a nicer Xmas eve. I'm interested to know how your gynea took on your case from another consultant was it you asking for endo specialist out original consultants decision? Take care Michelle

faffy73 in reply to michelle2013

Hi, thanks for your message. I had a nodule removed my belly button that was endo. I had it scanned 3 times and was told it was just a hernia, but my gynae thought differently and insisted doing a joint op, and it turned out to be both! My original gynae was brilliant and if it wasn't for her I wouldn't have had the lap. I haven't asked to be seen by anyone else, it's just happened! I think the new chap takes on more complicated cases. I did have a merina coil fitted when I had my first lap and that has helped with the heavy painful periods. I have never had or been offered any other form of pain killers or injections, tramadol has been the strongest, but I don't take them as my head is foggy enough! I am now of the mind that I no longer need the parts of my body that are causing life to be so difficult. I know it's a huge decision to make, but I want my life back on track and will do whatever it takes so I can move on.

Good luck and enjoy your Christmas Eve!!

Cathy XX

Hi i had an abdominal hysterectomy 3 yrs ago aged 46 after finding 10+ fibroids and multiple cysts. I asked to keep my ovaries as i didnt want the minefield of hrt. A year later i found that i had developed cysts on my ovaries which are currently 7cm and being monitored every 6 mths. During my scan last week ive now developed areas of endo which has stuck to my ovary and im now waiting to see if i need another operation to removed, cysts, ovaries and endo!!! Arrgghh not sure when this will stop. Ive had 3 ops in 3 years so far. The endo has caused me many symptoms that were currently unexplained. It may have been better to have complete hysterectomy in the first place??

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